CommentWelcome to the 29th Vulvodynia.com Guestbook.
CommentPlease note that on the home page there are now links to the new registry of professional sertice providers and the new registry for patients to rate their service providers. Also, you will soon see an announcement of the upcoming Friends of Oprah network on satellite radio in which Dr. Howard Glazer is intereviewed by Dr. Mehmet Oz. Thanks for your continued participation in the www.vulvodynia.com website.
CommentThis is to announce that Dr. Glazer's www.vulvodynia.com website has just initiated: 1. A registry of practitioners specializing in vulvodynia and related conditions. If you are a practitioner you can post your practice data at: http://www.vulvodynia.com/professional_regist_post.htm If you are a patient looking for a practitioner you can view the registry at: http://www.vulvodynia.com/professional_regist_frm.htm 2. A registry of patient ratings of practitioners. If you are a patient who wants to rate a practitioner you can post your rating at: http://www.vulvodynia.com/PatientRatings_post.htm If you are a paient wishing to view the ratings of practitioners posted by other patients go to: http://www.vulvodynia.com/PatientRatings_frm.htm Thank you Howard I. Glazer Ph.D.
Commenthello all: My name is Hillary and I am 30 years old. In July of 08, I was diagnosed with what was a typical urinary tract infection, and treated with a 3-day antibiotic. My symptoms went away and I thought I was free and clear. Then approximately 8 weeks later, I thought I had another UTI (this time the urine dip was unclear)-However, I was put on another course of meds, and things seemed fine until 6-8 weeks later I thought I had another infection--and again I was put on antibiotics. Then In december of 08, I hurt my back in a routine yoga class--it came out of nowhere, and an MRI confirmed a herniated disc. I finally was put on a course of steroids to reduce inflammation, and at the same time thought I had ANOTHER UTI--and I was put on Bactrum--which I had a horrible allergic rx to. Since that time, I have experienced chronic vaginal pain--sometimes it feels like burning and itching, sometimes its like pins and needles, but the most persistent symptom is swelling which almost feels like I am in a constant state of arousal. I have not had intercourse since the beginning of February, and I don't have pain during intercourse--I mean, the area doesn't feel great due to burning, but its really afterwards that everything seems to swell. So far my course of treatment has included being evaluated by 2 different urologists for UTI 's (intersitital cystitis was ruled out, and it is thought that I feel a frequency due to the swelling), a course of treatment for yeast (over the counter and diflucan which just honestly made everything worse), then steroid cream which I felt didn't help, and currently I'm on an estrogen cream. I'm having a difficult time finding the right doctor. I love my OBGYN but I'm worried he is not knowledgeable enough, and he seems to be getting frustrated with me--which is not a good match because I am extremely emotional right now, and easily intimidated. I have lost about 8 lbs, feel such a sense of guilt for letting my husband down, and also induced shingles due to stress. Sometimes I have "flare ups" which make it very difficult to even lay down and be comfortable. Thankfully I am sleeping through the night. I was just wondering if anyone could relate to my symptoms or has any advice. I'm wondering if my problem is nerve related due to the back injury that appears to have ignited all of this? I'm 30 years old and am petrified that this is what my life will be like and that I won't be able to have children. I just want my life back! thank you all for listening, and if anyone knows of any sensitive doctors in the Philadelphia areas, I would be grateful. Hillary
CommentTo Hillary: Please don't be upset that a guy is responding to your post. My wife and I have been married 26 years and she has had numerous UTI's and yeast infections. If you have the time to read some of the past GuestBooks you will realize how difficult it is for many women to truly rid themselves of a UTI. The bacteria most commonly at fault is e-coli and it just clinges to the walls of the bladder and keeps reinfecting. There are several approaches to reducing risk and reinfection. To begin with there is a product called D-Mannose which works similar to cranberry juice to make the bladder walls very slippery so that the bacteria is flushed away. Secondly there are the complications of personal hygene and sexual intimacy which must be carefully observed . I won't go into those details unless you are open to such conversation. Please be careful with the Estrace or other Estrogen medications. Best of luck. Frank.
CommentHillary, I highly recommend that you contact Dr. Paul Nyirjesy at Drexel's Vaginitis Center in Philadelphia at (215) 762-4000. I have experienced many of the symptoms that you describe, and after many excruciating months and going through numerous doctors, I was diagnosed with an allergy to yeast spores which was triggered by the use of antibiotics. I am currently on a very aggressive antifungal treatment and am feeling so much better. Diflucan orally and topical antifungals only made me worse as the yeast must be resistant to some of the meds, plus I believe the skin is very sensitive to all the preservatives and such that are added to the topical meds and see everything as an irritant. If it is yeast related, for now, take a good probiotic and eat yogurt (I eat Activia brand). Also, at my last visit, my doctor (not Nyrijesy) recommended trying pharmaceutical-grade boric acid, one teaspoon in a squirt bottle of water and using this each time after you use the bathroom and then dab dry but not with toilet paper as this will leave residue which can be irritating. However, I would stop this a week or two before seeing the doctor so that it does not affect any test results he may perform. I haven't tried this yet, but if you find that it irritates you or makes things worse, please don't continue using it. Regarding whether or not this could be from your back injury, only a doctor can make this diagnosis. However, if you can have a day or two that are pain free or find that the pain "moves," I would think that this would not be nerve related because I would think nerve damage would be constant and not come and go and would stay in the same exact area. Hang in there. Better days are ahead.
CommentDear Frank and Just me Thank you so much for your comments. and Frank, I certainly don't mind a man responding. I'm so worried about my husband's well being at this point, and the stability of my marriage that it is comforting to hear from someone sticking through and by their wife. I can't get enough re-assurance from my poor husband who has accompanied me to many appointments, and has gone without intimacy for a few months, and from the research I'm done, will likely go many more months. I know sex isn't everything, but we just began our life together, and I feel like a colossal disappointment to him. I'm sorry to sound like such a drag, but I'm feeling so hopeless and exhausted from dealing with the medical profession. Just so you know--I'm applying the estrogen cream only topically as I am aware of the risks of cancer, etc. I'm only supposed to be using it for 2 weeks as prescribed by my current gynocologist. I'm thankful for the doctor recommendations, but feeling overwhelmed b/c I feel like I am doctor bouncing, but I guess that's the nature of this. I really feel like my anti-biotic usage triggered this because my whole system is completely out of whack. Is Dr. Nyirjesy kind? Will he be able to rule out if it is yeast related? and how long did you have to wait to see him? I thank you all for replying and for your kindness. Hillary
CommentTo Hillary: Glad you were not offended by my response. I think it's wise for your husband to be involved in this process so he can see how difficult it all is and for the obvious support. I agree that "sex" is not everything but at the same time it is important, we need to focus on healing first and foremost but the urge to be intimate is undeniable. I would encourage you and your husband to hug, kiss and entertain whatever intimate behavior is enjoyable and acceptable in order to stay close and satisfied in the presence of this painful illness. You are wise to have picked up on the doctor bouncing syndrome, but the alternative is to stay with a doctor who is not helping. These wise men and women have many medicines in their arsenal for these various symptoms, unfortunately they can cause other problems as you are aware and they really don't resolve the underlying cause or causes. Boric acid suppositories can help to correct a yeast overgrowth by making the vagina more acidic, and products such as the D-Mannose can help the bladder flush away UTI causing bacteria, but preventing reoccurance and strengthening the immune system is a much more complicated job. You must be your own health advocate and question the need and risks for various medications or treatments. Please stay strong and encourage your husband to share his thoughts as well, I have found this site to be theraputic.
CommentThanks Frank--I really appreciate the encouragement. I am curious to know (and I know you are not a therapist) what helps you deal with your wife. i feel like this is consuming my life as it is often difficult to even find a comfortable position in which to relax, and so I feel like I talk about this ad nauseum. I really want to help my husband, and am curious what helps ypu cope or what has helped your marriage survive, besides love of course. I did contact the Drexel Vaginosis Center but the wait to see the doctor is into July(!!!!). They do have a NP that specializes that said she could see me the 31st. I'm not sure if I should have made the call but at this point I suppose it can't hurt, and if anything the NP can consult with the specialist that is booked into mid-summer. I just wish I had someone guiding me to let me know if I am making the right decisions through all this. I feel so confused. I'm sorry to ramble on like this. I'm just so grateful to have found other people going through what I am because I feel so alone! I need people to give me hope. thanks Hillary
CommentTo Hillary: Don't apologize for talking about what is bothering you, talk and if the people around you don't want to listen they are either too hung up on the subject or incapable of offering comfort. My wife and I have gone through a lot emotionally and sexually over the course of our marriage. I have discussed this at length over the last nine or so years on this site. She has had recurrent yeast and UTI infections throughout our twenty six year marriage and I am partly to blame. We had sex often, one to three times a day for years, I must sound like a animal but it was mutual and beautiful. The down side of all that intimacy is a constant barage of bacteria on the woman and a very fragile ph balance of the vagina. Semen will alter the ph balance which is why couples who are very active often have problems with yeast overgrowth. I am very proactive with my oral hygene because of all the bacteria in the mouth and I also pay close attention to cleaning my finer nails and entire body prior to sex. Positions during sex can also lead to introducing bacteria from the back to the front where they eventually cause UTI's. My wife's specific problem with Vulvodynia is a recurrent tear at the six o'clock position of the Vulva due to a thinning of the skin. No doctor has been able to determine the cause of the thinning skin, and nothing has helped to strengthen the skin including Estrace(estrogen cream). We engage in other forms of sex when we can't have intercourse, and if her clitoris is inflammed I don't annoy her. We hug and kiss and exchange passion regardless because the feelings are there and to not do so makes her feel upset as well. Everyone and every situation is different. I cannot ignore my sex drive, it is what it is, but that does not mean I have to annoy my wife or cheat or feel upset. Giving the subject of sexuality and marriage a fair amount of thought helps to deal with this event in your life and with your marriage in the future. I sometimes think Vulvodynia has made me a better husband and man because I have been forced to think and think and think, to work out all the angles and what if's. I think too many marriages fail because there is tool little caring and emotional investment. People don't take stock of themselves and judge their behavior. I don't want to hurt my wife by cheating, I don't want my daughters to think poorly of me and men in general. I want my marriage to be successful, I want my wife to trust me and love me. That's what helped us get past the tough times such as when we lost our infant daughter to a genetic illness, and that mindset has helped us stay together during the times we could not have intercourse. I know that marriage is more than our bodies and sex, and love is about sharing and caring. I see so many of the married couples we know divorcing and it makes me sad and mad, I want to grab them and shake them and tell them to not be selfish, to spend time with eachother and laugh and make love. Hillary, do what you can sexually but along with your husband find joy and happiness is all the other things that can make your marriage full.
CommentTo Hillary: Don't apologize for talking about what is bothering you, talk and if the people around you don't want to listen they are either too hung up on the subject or incapable of offering comfort. My wife and I have gone through a lot emotionally and sexually over the course of our marriage. I have discussed this at length over the last nine or so years on this site. She has had recurrent yeast and UTI infections throughout our twenty six year marriage and I am partly to blame. We had sex often, one to three times a day for years, I must sound like a animal but it was mutual and beautiful. The down side of all that intimacy is a constant barage of bacteria on the woman and a very fragile ph balance of the vagina. Semen will alter the ph balance which is why couples who are very active often have problems with yeast overgrowth. I am very proactive with my oral hygene because of all the bacteria in the mouth and I also pay close attention to cleaning my finer nails and entire body prior to sex. Positions during sex can also lead to introducing bacteria from the back to the front where they eventually cause UTI's. My wife's specific problem with Vulvodynia is a recurrent tear at the six o'clock position of the Vulva due to a thinning of the skin. No doctor has been able to determine the cause of the thinning skin, and nothing has helped to strengthen the skin including Estrace(estrogen cream). We engage in other forms of sex when we can't have intercourse, and if her clitoris is inflammed I don't annoy her. We hug and kiss and exchange passion regardless because the feelings are there and to not do so makes her feel upset as well. Everyone and every situation is different. I cannot ignore my sex drive, it is what it is, but that does not mean I have to annoy my wife or cheat or feel upset. Giving the subject of sexuality and marriage a fair amount of thought helps to deal with this event in your life and with your marriage in the future. I sometimes think Vulvodynia has made me a better husband and man because I have been forced to think and think and think, to work out all the angles and what if's. I think too many marriages fail because there is tool little caring and emotional investment. People don't take stock of themselves and judge their behavior. I don't want to hurt my wife by cheating, I don't want my daughters to think poorly of me and men in general. I want my marriage to be successful, I want my wife to trust me and love me. That's what helped us get past the tough times such as when we lost our infant daughter to a genetic illness, and that mindset has helped us stay together during the times we could not have intercourse. I know that marriage is more than our bodies and sex, and love is about sharing and caring. I see so many of the married couples we know divorcing and it makes me sad and mad, I want to grab them and shake them and tell them to not be selfish, to spend time with eachother and laugh and make love. Hillary, do what you can sexually but along with your husband find joy and happiness is all the other things that can make your marriage full.
CommentI wanted to write this to help woman that are suffering with Vulvodynia. I started getting my first systems of Vulvodynia back in 1998. As the years went on, it became progressively worse. I tried just about every treatment out there--food diets, creams, pills, laser treatments on the area--and nothing worked! It became very painful for me to have sex and I was becoming very depressed. I then started doing alot of research and came accross an article written by a doctor that claimed that Vulvodynia was a symptom on Fybromyaglia (excuse my spelling). It told of his years of dealing with pateints with Fibromyaglia and how he helped them. In almost every case he recommended taking a over the counter medicine called Guafenisin (this is the same stuff that is in cough medicine). After reading several of his articles and his book--I ordered off the internet a container with 600mg of Guafenisin per pill--I started taking 3 pills per day. Within 3 months my Vulvodynia disappeared. I took the pills for around 3 years and then got pregnant and had to stop. sometimes I feel a little apin but overall I am 95% better-and I have been able to have 3 children vaginally and intercourse without having pain--I have not even taken the medicine in 4 years. I just felt it was my duty to finally speak out about what has helped change my life. I hope it helps you, too. If you would like to talk to me, you are welcome to email me at lisalask@msn.com. Lisa
CommentI have suffered with vulvodynia for the past year. Mine like so many others on here feel it started with a round of anitbiotics. I was put on Bactrim for UTI at and emergency room. For the past couple of months i have started taking calcium citrate and it has helped with the burning. I still have at least one yeast infection a month. I use 1-2 tea tree oil drops in a douche and it soothes and usually gets rid of the infection faster than the diflucan and creams. I dont use the creams anymore they make things worse. It seems i always have the yeast infection right before and during my menstrual cycle. Is there any others that experience that? Are there other antifungal meds i could ask my gyn doctor since she seems to not know what to do?
CommentHi All - I suffered with vulvodynia for many years and came to this guestbook often for ideas. I am now 95% better - am having sex again and am working up to wearing tight pants again. I wanted to share my story as it may help others. My main symptoms were swelling and extreme sensitivity. I had pain all the time, especially with sitting, not just with sex. I did not have itching or burning pain. I will not list all the things I tried - as I tried many many things but will share the things I think made the most difference for me. The first thing that helped me a lot was I was put on topical estrogen and estrogen supositories. This got rid of about 25% of the pain. I also had a vulvectomy with vaginal advancement. I was 100% better after that for about 6 months. I then went on birth control pills and that brought the swelling and sensitivity back. The big breakthrough came when i started physical therapy and whenever my therapsit would massage my Bartholin's glands, I would walk out of the office pain free and be pain free for a few hours, then the swelling would return. I then research Bartholin's Glands and I found a few articles that linked Bartholin's Glands with vulvodynia. There were even a few that said some doctors now recommended removing bartholins glands when someone gets a vulvectomy. I went to a great specialist where I lived and had him check my Bartholins glands. If they are nornal, they should not be able to be felt. However, mine were swollen and enlarged to the touch. We dicided to have the removed. So, i had one last surgery to remove my bartholins glands. Since that surgery all the swelling dissapeared. I had some complicaitons post surgery (i have an immune reaction to the stitches and my left vulva side swelled up really bad -- fun times.) and had to do about 6 months of physical therapy. But now I am 95% better. For the first time on forever, we are having pain free sex and i am painfree 100% of the time! Still working on the tigh jeans but that seems like nothing compared to what i've already accomplished. I know this might not be the solution for everyone, but especially if swelling is one of your main symptoms - you may want to look into the bartholins glands as a culprit. Good luck! Don't give up as it took me many years but I was able to put the puzzle pieces together and am now pain free!
CommentProtein...larger amounts of protein from lean meats(turkey chicken), cashews, high protein/low sugar/carb yogurt-Siggi's plain yogurt is the best for me. This works for me! Protein ..increase your protein intake..see if this works for you. If it does or you can improve upon it...do it and pass it along. Thank You
CommentTo Kimm, Can you tell me how much calcium citrate you take a day and what strength? I have vulva burning also, Dotie
CommentHey Dottie! I purchase calcium citrate at Wal-Mart. The bottle has 200 tablets (costs about 9 bucks) and I take 2 tablets in the morning and then 2 at night. On the bottle it reads: Vitamin D 400 I.U. and Calcium 630 mg. It took me a couple of weeks to see a difference. I hope it helps you as well!
CommentHi Kimm, Thanks for your response. That happens to be the same bottle I purchased at Walmart. I have been taking one in the AM and one in the PM because I didnt want to over due it. I have Lichen Scelorsis so I also use a topical cortisone because I have side effects from any estrogen creme. What is your diag. Thanks Dottie
CommentTo Lisa, I was told by my obg I had vulvodynia also. She gave me diagnosis of Lichen Scelorsis (spelling?) SHe said vulvodynia is a broad name with a lot of conditions. Did you get a specific diagnosis? Thanks so much for any suggestions from you or others on this site. Nancy
CommentI've been dealing with the symptoms of vulvodynia for about 2 years now, but I just put a name to the pain. I need to see a doctor about this, but don't know where to go. Anyone know of a good doctor in the Twin Cities, MN area?
Comment
CommentCheryl, I noticed that you've seen a good doctor in Chicago. I would love to get that doctor's name, location and phone number. I'm suffering so bad! I can't believe how painful this how and the fact that most women don't ever find relief. It's so discouraging! Please help!!
CommentIf you are suffering from Vulvodynia it may not be that. I kept getting recurring yeast infections because i had an autoimmune disease that caused me to have digestion issues, inflammation and white discharge. I got very irritated, i had minor burning and a lot of discomfort. Every doctor that i saw told me that i had vulvar vestibulitis/vulvodynia and suggested that i go to physical therapy which didn't help me. If you are suffering it could be a nerve that is damaged from an infection that is long gone, or from a food allergy or continuous yeast infection from diabetes, a thyroid problem or a problem digesting your food. Please check out my website at www.symptomanswers.com. I have done 8 years of research and i know that you will be pain free like i am after reading my story.
CommentBEWARE OF SUZZANNE HARRISON SCAM. The above who is selling her story in the internet is around $20.00. You do not get any book, but she will give you a site in the web to ready the page and half story for $20.00. She cured herself by diet, because she was diagnosed with CELIAC disease. She treated herself by not eating gluten. Believe me that diet is not the only cured of this disease. Most of us got sick because of imbalance and autoimmune disease which we acquired not through birth but to what we did to our body. Lot of it has to do with hormones, like birth control usage, diet of too much carbs and sugar, exposure to environmental toxins, and most of all TOO MUCH antibiotic usage due to compromised immune system, as we were all susceptible to infection. This is a SCAM. So not eating gluten will not cure your vulvodynia. There is more things to do than that. It is one of them, I agree. But I am sure lots of you has gone this way. When I purchase the story, I honestly knew more thatn what she knew. Also it is not right for her to make MONEY on people who are already suffering and have been drained financially with doctors. If she really got better and would like to help, I will share my story for free just to help. Yes, $20.00 is not much, but believe she can take advantage of thousands of us who are suffering. I myself is healed, and I spent my time with lots of sufferers who would like to talk to me. I listen to them and explain things to them for Free. I am caring and understanding. I tell them what I did and I DO NOT FORCE anyone to follow what I do. But I have to tell you if it is body imbalance and autoimmune caused by damage to our body, it takes time and patients and of course finding the right thing to do. I am just saddened by people who are not sympathetic and most of all take advantage of us sufferers. I was a VICTIM of purchasing her story. She treated Celiac disease. I do not stop you of buying her story, but prepared for disappointment.
CommentThank you Nellie. I had no intention of buying her story, don't worry. Like you, I think it's sad that someone would use a forum where the sole purpose is to help people, by selling information. I also thought it was odd that I did not describe ANY of my symptoms yet she said it might not be Vulvodynia at all. Interesting diagnoses from a non-medical professional with NO facts whatsoever. Shame on her!! I am seeing a specialist in this particular field on Friday and hope to have some answers which will finally help me.
CommentFor whatever it's worth, here's my 2 cents -- Appalled is the first word that came to my mind when I saw that someone was trying to sell a "cure," but then I thought perhaps I was overreacting. When I read Nellie and Susan's postings, I realized I was not the only one who felt this way. There is no one single fix for vulvodynia -- what works for one person does not necessarily work for another. In my particular case, I developed an autoimmune disease that just happens to be an allergy to yeast spores. Yeast can be a normal part of the vaginal flora; it just sucks that I have to be allergic to mine. Over the past three years, I have spent thousands of dollars trying to feel "normal" again. I am fortunate to have insurance as my current medications cost over $12,000 a month (yes, you read that correctly -- $12,000!!!), and the sad thing is that I believe that the yeast have recently developed a resistance to this latest medication and that it has stopped working for me. Time lost from work, expenses traveling back and forth to doctors (gas, wear/tear on vehicle), co-pays for doctor visits, co-pays for prescriptions, visits to naturopathic doctors, chiropractors, acupressure treatments, vitamins, herbs to cleanse the body, over-the-counter yeast creams, changes in diet requiring the purchase of more expensive foods, etc., etc., etc. have severely drained our bank account, maxed out our credit cards, not to mention the physical, mental, and emotional toll that this disease has had on me as well as my husband and children that one cannot put a price on. When I do find a cure, you can be certain that I will be shouting it from every rooftop, posting it on every board, sharing it with doctors so that they in turn can help future patients. I feel a sense of obligation to help fellow sufferers and spare them the years of pain and suffering, not to mention the financial burden. It irks me when anyone tries to capitalize on this disease for their own personal gain, and an internet search reveals the above poster is not the only one doing this, so I do not mean to point my finger at any one particular person, although I do admire her attempt at entrepreneurship. Perhaps the reason it bothers me so much is because of the particular economic times we are currently experiencing (recession, bordering depression). People are losing jobs, losing health insurance. They are struggling just to keep a roof over their heads and food on their tables, much less can't afford to get sick. Shouldn't we all be pulling together, extending a helping hand??? To the few who no longer suffer with vulvodynia and occasionally check in to let us know that they are still doing well and post what worked for them, I am forever and ever grateful. It gives me hope that I, too, will one day be well again. Hillary Clinton once said that it takes a village to raise a child. Well, I believe it is going to take a village to find a cure for vulvodynia -- a village of people helping people without a price tag attached. Isn't that what this small internet community/message board is all about??? My newest attempt to cure myself is immunotherapy. I just started receiving weekly allergy shots for yeast, but it is going to take a year to see whether or not it is working. I will keep you all posted if this is my cure or not, and you will all be able to read about it in my e-book coming out next year for $19.95 -- just kidding!!! I have a long way to go as I have only had three shots so far, and I am not handling them well at all. I almost went into anaphylactic shock with one shot, and my most recent shot caused my lips to tingle and I had a migraine the rest of the day. My body really must not like yeast in any form!!! Wishing you all pain-free days!
CommentSusan -- the doctors I see are Dr. Frank Tu and Dr. Sangeeta Senapati in Skokie -- they are right near the Old Orchard Shopping. I seen Dr. Senapati and she was wonderful. They specialize in pelvic disorders and only see Gyne patients. Good luck -- I hope they help -- she did for me.
CommentDr. Oz Interviews NVA Board Member about Vulvodynia on XM Radio Tune into XM satellite radio channel 156, Oprah & Friends, on Friday, March 27th, when Dr. Mehmet Oz, aka America's Doctor, will interview Dr. Howard Glazer, clinical associate professor of obstetrics, gynecology and psychology at Cornell University and NVA medical advisory board member, about vulvodynia. The show repeats throughout the day at 7am, 11am and 4pm EST. Dr. Glazer's New York City practice focuses on the use of surface electromyographic feedback (sEMG or "biofeedback") in treating pelvic and urogenital pain syndromes, such as vulvodynia. During the hour-long show, the doctors will discuss "everything vulvodynia," including the importance of assessing pelvic floor muscles and treating any dysfunction. XM radio subscribers can tune into Channel 156 from their satellite radios. If you don't have an XM subscription, you can quickly sign up for a free trial and listen to the show online: http://xmro.xmradio.com/xstream/index.jsp
CommentDr. Oz Interviews NVA Board Member about Vulvodynia on XM Radio Tune into XM satellite radio channel 156, Oprah & Friends, on Friday, March 27th, when Dr. Mehmet Oz, aka America's Doctor, will interview Dr. Howard Glazer, clinical associate professor of obstetrics, gynecology and psychology at Cornell University and NVA medical advisory board member, about vulvodynia. The show repeats throughout the day at 7am, 11am and 4pm EST. Dr. Glazer's New York City practice focuses on the use of surface electromyographic feedback (sEMG or "biofeedback") in treating pelvic and urogenital pain syndromes, such as vulvodynia. During the hour-long show, the doctors will discuss "everything vulvodynia," including the importance of assessing pelvic floor muscles and treating any dysfunction. XM radio subscribers can tune into Channel 156 from their satellite radios. If you don't have an XM subscription, you can quickly sign up for a free trial and listen to the show online: http://xmro.xmradio.com/xstream/index.jsp
CommentDr. Oz Interviews NVA Board Member about Vulvodynia on XM Radio Tune into XM satellite radio channel 156, Oprah & Friends, on Friday, March 27th, when Dr. Mehmet Oz, aka America's Doctor, will interview Dr. Howard Glazer, clinical associate professor of obstetrics, gynecology and psychology at Cornell University and NVA medical advisory board member, about vulvodynia. The show repeats throughout the day at 7am, 11am and 4pm EST. Dr. Glazer's New York City practice focuses on the use of surface electromyographic feedback (sEMG or "biofeedback") in treating pelvic and urogenital pain syndromes, such as vulvodynia. During the hour-long show, the doctors will discuss "everything vulvodynia," including the importance of assessing pelvic floor muscles and treating any dysfunction. XM radio subscribers can tune into Channel 156 from their satellite radios. If you don't have an XM subscription, you can quickly sign up for a free trial and listen to the show online: http://xmro.xmradio.com/xstream/index.jsp
CommentTo Nellie, THANK you so much for the warning. I was about to look into Harrisons web site. I think it is cruel for her to sell any information. I f I knew what was a solution I surely would share it with everyone. I would like to know what you were diag. with and what you use. I have L S Thanks Amzy
CommentHello Susan, I read your thank you note to Nellie regarding
CommentHello Susan, I read your thank you to Nellie. You said you have an appointement with a specialist regarding Vulvodynia. Could you let me know what advice you are given. I am at a standstill right now. Any info would be helpful. Dottie
CommentTO HILLARY, I read your posting. The Dr. that you are thinking about seeing is close to my area and I have heard of HIM. Let me know if you see the other Dr. and want your opinion is. AMZY
CommentHi Amzy, Yes, Suzanne is making money on us sufferers. It is ot fair. Anyway, there is NO SINGLE cure for this disease, mayit be lichen,..nerve damage, infection, what have you, you have to realized that it is what we did to our body that caused this. Also, analyze, do you have multiple problems. had. Sinus, bronchial, chronic, bladder infection, vaginal infection, joint and muscle pains, reflux. When you have multiple problems, the body is out of whack. The problem we have in any part of our body is caused within us. The imbalance or the autoimmune disease we have cause INFLAMMATION and all our problem is due this. How do you treat this. If it took years for us to develop this, sometimes it take years too to cure it. I went through a lot from supplements, drugs, specifically candida drugs, Diflucan, which I must say helped me the most. I became symptom free while I was on it. I even took allergy shots on all sort of yeast and candida spores. The only thing I did not try is antidepressant because, I could not tolerate them at all. Perhaps if I tolerated them. I could have gone that way. I healed myself through a combination of things. It has been 6 years now, I am under treatment and it is getting better every year. All I knew is that I did not want to take any antidepressant drugs, neither use anything topically because when you are inflamed, it can aggravate it. Things I avoided are antibiotics, steroid, either pills or cream, hormones may it be birth control or HRT or any hormones cream. When I tried this years ago, I became worst especially antibiotics and hormones cream like premarin or estrace. Of course, I was very careful with my diet , as much as possible no sugar, wine, carbs and I tried to eat healthy. I religiously saw a good accupuncturist and with herbs combination, in time I got better and better. Warning though. When you go this way, it is not a quick fix. When your body tries to balance and eliminate toxins, which I figure a lot of it has something to do with candida, your body gets really bad. In the first 3 months of my treatment, I thought I was going to die. I developed dizziness, terrible fatique, ,chills, fever, weakness. I kept on, only because I told myself there is not other way for me, because I tried Everything and went to all the best and extremely expensive doctors in New York who only gave me drugs and supplements. Beware though, that not all accupuncturist can give you good results. I have been previously to six of them all over Manhattan, but it is only this one who knows what he is doing. It was a difficult taks. I have horrible sinus problem. When he treated ny sinus for four weeks, 2X a week, the toxins started to move down and it gave me so much vaginal and urethral pain. Which means in the process of cleansing when they move the meridiens in your body to open up blockages. inflammation goes somewhere. Chinese or holistic way takes time and money. My physical therapist says I am brave for the easy way out is just to take antidepressat and it works well for a lot. So I am sorry there is no quick fix, but a lot of dedication and research will help.If any of your are interested, there is an accupuncturist in NYC who studied from the same Master as my accupuncturist. I will get it from him when I see him tomorrow. You have to be brave though and take the herbs religiously even though you suffer more in the beginning. Perservere and you will get better in time. I am glad I went through it braveley and now I have my life back. Unfortunately it is hard to go this way because of time and money and you go on an up and down before your body normalizes. Be well, it is a hard road to recovery. I have a friend though who is doing so well on antidepressant. She is taking 60 mg of cymbalta. The problem with drugs is that there will come a time when they stop working and can also in time mess up your body's energy or CHI in chinese. Also who would like to be on them for years. The do not cure but they definitely mask the symptom, at least you have a life. Also, perhaps, some of yu wll get well quickly because your body is NOT AS TOXIC any mine. My toxcity is so deep rooted in my tissues that is why it takes time. I had this for nearly 15 years before I went the right way. If you treat it immediately, you will be lucky to have it under control quickly.
CommentTO NELLIE, Thank you so much for this info. Amzy
CommentTO NELLIE AND ALL; I am 62 years old and my vulvodynia is due to lack of hormones. I tried premarin creme and it did help but I had spotting so I stopped. I was diag. with atrophic vaginits from my first Obg. My family Dr. recommended another Obg. and she Diag. me with Lichens. And because of being informed by another site memeber, Sue, who has not posted yet in the new guestbook, I obtained some info. from her and asked my obg. She agreed and I used Clobetasol for 3 months 2xs a day. Before I started this I could not even sit in the bath tube. Prolonged sitting and walking was really a problem mostly with burning. Also, with the advice of Sue I went to a derm. who also diag. me with Lichens. I am now down to 2xs a week with the clob. and sometimes inbetween I use a lower dose of cortisone. I still have some problems but not nearly as much as before. Also, Cheryl has provided me with some advice that has also helped. I read and researched so much on the steroid creme. What I found was if used sparingly there should not be any thinning of the tissue. I also was assured of this by my derm. However, I do realize that just because of this assurance, it doesnt mean there can be a problem down the line. At this point, I cannot afford all the other types of treatment. I have most of my problem sitting for long periods of time by the V zone seems to be under control. Now I have irritation on the outside. It will take a lot more I know. I thank you and ALL the other's for support, information, and know that we are a family. Amzy
CommentDottie: I had my appointment yesterday and it went very well. I was diagnosed with Vulvar Vestibulitis (which just confirmed my original doctor's diagnosis). First step is to remove any potential irritants. I'm sure you've read about them all, as I have. Use Dreft laundry detergent and NO fabric softeners. However, that is just for clothing items that come in contact with the vulva area. Shirts, bras, or anything that does not come in contact can be washed in whatever you choose. Also, no pantyhose, and wear only 100% cotton white underwear. If you wear colors just make sure to wash them 3-5 times so any dyes get washed out (like new jeans that can blead onto your skin...same thinking). He didn't seem to think a low oxalate diet was a concern, but if I really wanted to try, just eliminate extremely high oxalates like soda, caffeine, berries, and nuts. Also a Caltrate supplement can be taken. Use unscented everything, including toilet paper and soap. Keep unscented Kleenex in your purse so if you go somewhere that has scented TP, you can use the Kleenex instead. As for soap, even if you don't wash the vulva area with soap, it still drips down in the shower, so be careful. I've already bought Dove unscented soaps. For shampoo, all are scented. So just try your best to hold your head back while rinsing so it doesn't drip down your front. Never go in hot tubs. If you MUST go in chlorine pools (which should be avoided if possible), put Vaseline on the area and it will help to block the skin from the water. If you want to take a bath in your own bathtub he said that's ok. However, when you wash the tub, you may still see a film from the cleanser. That was a big concern, obviously. So if you can clean out the entire tub to the point you think there is no residue, you can take a bath. Doesn't sound worth the risk to me though. Wash your hands after AND before going to the bathroom. Thinking on this is that your dirty hands touch the TP, then you wipe with the TP and now all that dirt is on you. And my personal favorite, keep a squirt bottle with you at all times and after peeing, squirt on the vulva a couple times to rinse the urine, then wipe. Urine is a HUGE irritant! So he said this one is most important. I've only been doing this since yesterday, but I can definitely see the benefit. I bought mini-squirt bottles at Target yesterday in the "small samples" section. They are the perfect size so I can keep some in my purse. After removing all the irritants he talked about treatment, which definitely varies from person to person. He is starting me out with Estrogen cream. Just a dab on each side where the irritation is at nighttime. And he also started me on Imipramine pills. It is a tricyclic antidepressant, but is not used for depression. I read "antidepressants modify neurotransmitter levels (chemical substances that carry impulses from one nerve cell to another)". So since Vulvodynia seems to be partially about nerve endings on overdrive, antidepressants calm those nerves. And then for the pain he just said to put frozen peas in small plastic bags and ice the area as needed (but do not put directly on skin). And if you plan to have sex, if you have Lidocaine ointment use a VERY small amount on the affected area. Too much will numb your partner (can you imagine?). You can use KY or Astroglide to make the rest of the experience easier. And then, of course, shower immediately afterwards and use the frozen peas ice pack to help with any pain. Hmm, I think that's everything. He told me this could take weeks to months to start to feel better and I needed to be patient. Just knowing that I'm with a doctor who has experience with this condition makes me feel better and trust him. My last doc had only seen a small amount of patients for this condition. My new doc has treat over 7000!! And he said he has performed Vestibulectomys for only about 350. He said he WILL make me better! My best advice is to make sure you find someone with real experience.
CommentTO SUSAN, WOW, thank you for all your info. Many of the things, underwear, soap, pany hose I have been doing. I tired the premarin creme but it made me spot. So I stoped that. I am currently using clobetosol now down to 2xs a week. A &D creme inbetween. I am going to ask my Dr. for estrace just a little a few times a week to see if I spot. I have had some relief (about 85%) in the past 6 months. Actually my derm said the LS is under control. I just cant stand one little pinch. It puts me over the edge. I will get a squirt bottle as you posted and keep that with me also. I will read your posting again to be sure I have everything in my mind. Please keep posting and good luck to you and thanks for sharing info.I dont know if V sufferers can expect to have NO symptoms but that is what my goal is. Please keep posting your experiences with your Dr. and so will I. Dottie
CommentHi Dottie and Susan -- great advice -- only two things I would be careful of -- I used Dreft in the beginning for laundering and found out that it has quite a bit of ingredients in it -- better yet is "All Free and Clear" -- great product and much better than Dreft for this problem -- also double rinse your underwear too. Also for intercourse -- KY and Astroglide -- read the ingredients -- in some past guestbooks people have stated that these products could cause some irritation also -- your own natural lubricants is safest. Ask your doctors about using lidocaine at night on a cotton ball at the entrance to the vagina -- helped to give those nerves a break and worked wonders for me -- and yes when using it during intercourse it can cause numbness!!! Goodluck and I hope you both find some relief.
CommentCheryl, Thanks for the info. I use all but not free and clear, but I do rinse my underwear 3xs. I willget the free and clear. I dont understand about the lidocaine and the nerves. Can you explain that for me. Thanks Dottie
CommentHi Dottie -- for some back up with this look under the University of Michigan Vulvar Pain Clinic. My doctor recommended the use of Lidocaine on the entrance to the vagina. You apply some to the area and then put a good amount on a cotton ball and put it at the entrance over night. They have had good results with this. Part of the problem with vulvodynia is that the nerves in this area are on high alert. I had a lot of pain at the entrance of the vagina -- especially when sitting or wearing certain clothes. The lidocaine helps to numb the area and give the nerves a break. The nerves are on a pathway to the brain that is sending signals of pain -- if you can break that cycle you can lessen the pain. I had very good results along with 4 months of low dose Elavil -- which was a big help -- it helped with some of the pain and also with some mild depression. I hope this helps. Good luck.
CommentTO CHERYL---I thank you so much for this information. I put a call into my derm. and he called in a script for the lidocaine. He said it would help with the discomfor. I just wnat to say that I have LSA and I really dont have a problem with the entrance to the vagina. Mine is the labia. I dont know if I will get the same success as you. I will see my Derm in 10 days. Do you think it will help me the way it has you. I also use clobetosol now down to 2-3 times a week. My V pain comes from low hormones. I will be looking for you opinion. Dottie
CommentI have read the symptoms described in guestbook #25. I also have coldness down the thighs upon sitting. Dr. stopped the Lyrica for a few days. Would like to know if that has helped anyone
CommentHi Dottie -- I can't say for sure if it will help with generalized pain in the vulva -- I had some of those same symptoms and the Elavil seemed to help more with that discomfort -- but if you can tolerate applying Lidocaine -- you may get some relief for a period of time on a bad day and who knows it may help. Check out the University of Michigan website they had some good info and I do understand that you have some underlying issues and you need to treat those problems as well. Good luck
CommentTo SUSAN, Can you tell me how often you put the dab of estrogen on each side. Every night, every other night? Thanks Dottie
CommentI am very interested in vulvodynia, please send me info.
CommentTo PAT IF THAT IS SUPPOSE TO BE FUNNY----IT"S NOT!!!
CommentHello All, I have suffered from Vulvodynia/Vulvar Vestibulitis for about 5 years now. I only have pain through intercourse, riding bikes, and sometimes sitting for a while. Not as much as some have been through on here, but quite enough to be traumatized by it all. My doc went to a meeting in California and she brought up my case since nothing seemed to work...i.e. pills, estrogen cream, lidocaine, etc. She came back to me with a suggestion to go and see a Physical Therapist that specializes in Woman's Problems. So I did! My physical therapist works on desensitizing the nerves by applying pressure. She also works on a sort of massaging technique on my pelvic floor muscles. The first few sessions hurt like hell and I even cried a bit. But, it got better and better and less painful as time went on. She also had met up with a Doc who works in a Pain Clinic. So I went to see him to see if he could help my manage my pain. He suggested injecting me with a local anesthetic into my pudendal nerve (which they find by ultra sound machine on one of your butt cheeks). I figured I had nothing to lose. BEST DECISION I EVER MADE! As your Doc about this treatment! I had sex with my husband of 4 years last week for the first time without pain. The only thing that was slightly uncomfortable was the fact that since I have not had sex in so long, my body is trying to readjust to him. So I felt some stretching, which my therapist is also working with me on in therapy. I am confident that with the combo of the therapy and the shot I will stay pain free. The Doc said I might not need another shot. Some patients are better after one, b/c it "retrains" the nerve endings to not send the wrong (pain) signals to the brain. Please email me if you have any questions at all!
CommentMy specialist for vulvolynia has run out of options for me. I also have myofascial pain syndrome and fibro. I have had pelvic floor therapy with a PT but the burning persists to the PT's quandry. Should I take the pelvic floor therapy again. Please help. Thank you!
CommentI was wondering if anyone has ever tried Nervefix? Also, has anyone ever had sinusitis as a side effect to generic Neurontin? I really liked that medication as far as helping my vulvodynia, but it caused chronic nasal congestion, sinus head and teeth pain and became intolerable, had to stop the med.
CommentI was wondering if anyone has ever tried Nervefix? Also, has anyone ever had sinusitis as a side effect to generic Neurontin? I really liked that medication as far as helping my vulvodynia, but it caused chronic nasal congestion, sinus head and teeth pain and became intolerable, had to stop the med.
CommentI was wondering if anyone has ever tried Nervefix? Also, has anyone ever had sinusitis as a side effect to generic Neurontin? I really liked that medication as far as helping my vulvodynia, but it caused chronic nasal congestion, sinus head and teeth pain and became intolerable, had to stop the med.
Commenthi, I'm 43 and I've had vulvodynia coupled with increase in urination since Nov. 2008. I've just been diagnosed in March of 2009. (after taking all the drugs for yeast and bladder infections etc) After reading a lot of the other guest's comments, I count myself lucky that it only took 5 months to find a name for this painful condition. I'm trying to stay positive and focus on the success stories and tell myself that this is only a temporary condition. I WILL get better! Some days I still cry in the bathtub and get discouraged but then I just try to get myself together and readjust my attitude. I really believe what you focus on expands so I'm going to concentrate on feeling well. I've noticed that my condition improves by about 50% when I'm relaxed and not sitting at my desk at work. For example, we went to Mexico last month and I spent most of the time laying on a beach lounge chair and there were times when I felt no pain at all! I guess that is a cure to this condition, stay on vacation! :) Like all of you I feel like you have to take charge of your own health and I've started doing my own research. In the beginning I just handed myself over to the mercy of the doctors (family doctor, infection specialist, gyno) and took whatever drug they gave me. Now I'm doing so much reading I feel like I know more about vulvodynia than they do! I'm still open to their suggestions of course but I no longer naively comply to everything they say. I'm encouraged by all of you who talk about healing naturally. I'm listening to my intuition too. I don't like taking drugs although if there were a miracle cure to take my pain away, admittedly I'd take it in a heartbeat. Currently I'm trying the Estrace cream. I'm lucky to live in Calgary where there is a specialty pharmacy that custom made this cream for me as it is not available in drugstores in Canada. My gyno only gave me a prescription after I showed her the section in my book - The Vulvodynia Survival Guide, that talks about Estrace being helpful for women who aren't menopausal. One huge thing I've learned about talking to doctors, you don't dare say you read something on the internet that might help you, the internet has no credibility with them. They seem to be more open to information that came from a published source. I also sometimes get the feeling that the doctor's egos prevent them from listening to something their patient has said because how could the patient know something they didn't. It's too bad I have to walk on eggshells with these doctors to protect their egos but you do what you have to. I must say my family doctor has been wonderful. She even hugged me when I cried the first time in her office. I've discovered that the doctors appreciate humor. I started calling my condition "fire crotch" and got a laugh out of all of them. I figure they need a break from me crying in their offices all the time! As we all know, the mental anguish of this condition is just as bad as the pain. We don't look sick and we have to act like we're fine in our day to day activities. I'm finding that I'm getting resentful on Monday when people come up to me and ask how my weekend was. I feel like saying, "do you really want to know? I spent as much as my weekend as possible in a nightgown with no underwear and in the bathtub to try to cope and deal with my chronic pain. I don't do much socially anymore, my life now revolves around my pain and getting through each day." But of course I don't say that to my well intentioned coworkers, I just put on a fake smile, lie and say I had a wonderful weekend. But you know what? One day I am going to have wonderful weekends again. One thing that gives me hope is that I recovered from another condition a few years ago. For 6 years I had terribly itchy hives. I suffered every day with itchiness all over my body for 6 straight years and I thought that condition would never go away. After a lot of reading and experimenting with eliminating different foods, one day I tried not eating aspartame anymore and my hives went away! I really miss diet coke and gum but it's well worth the sacrifice. All to say, I know the same thing is going to happen with my vulvodynia. I'm going to keep researching and keep trying different treatments and I'm going to be healthy once again. What you focus on expands. Currently I'm seeing a pelvic floor specialist and this lady is great. She is so caring! What a treat it was on my first visit to have someone listen to me for an entire hour. It was like therapy! I'm doing the kegal excercises now for about 2 weeks and I think it's helping with my too frequent urination. I came back from doing errands last night and realized I didn't have to look for a restroom while I was out! I've also noticed at work that I'm not going every hour like I used to. It will be so nice to get back to a normal amount of peeing. It's stressful having to plan your day around bathroom visits. I'm going to keep doing the kegals, they are good for anybody to do anyhow. They say as you get older that incontinence can be a problem. Not me, one day I'll have the strongest pelvic muscles in the old folks home! Well ladies, thanks for "listening", I don't know anyone else with this condition. It's nice to "talk" to someone who can truly empathise with me. I'll keep reading your posts and in the mean time, I'll try to appreciate what's good in my life and look forward to a healthy future. :)
Commenthi, I'm 43 and I've had vulvodynia coupled with increase in urination since Nov. 2008. I've just been diagnosed in March of 2009. (after taking all the drugs for yeast and bladder infections etc) After reading a lot of the other guest's comments, I count myself lucky that it only took 5 months to find a name for this painful condition. I'm trying to stay positive and focus on the success stories and tell myself that this is only a temporary condition. I WILL get better! Some days I still cry in the bathtub and get discouraged but then I just try to get myself together and readjust my attitude. I really believe what you focus on expands so I'm going to concentrate on feeling well. I've noticed that my condition improves by about 50% when I'm relaxed and not sitting at my desk at work. For example, we went to Mexico last month and I spent most of the time laying on a beach lounge chair and there were times when I felt no pain at all! I guess that is a cure to this condition, stay on vacation! :) Like all of you I feel like you have to take charge of your own health and I've started doing my own research. In the beginning I just handed myself over to the mercy of the doctors (family doctor, infection specialist, gyno) and took whatever drug they gave me. Now I'm doing so much reading I feel like I know more about vulvodynia than they do! I'm still open to their suggestions of course but I no longer naively comply to everything they say. I'm encouraged by all of you who talk about healing naturally. I'm listening to my intuition too. I don't like taking drugs although if there were a miracle cure to take my pain away, admittedly I'd take it in a heartbeat. Currently I'm trying the Estrace cream. I'm lucky to live in Calgary where there is a specialty pharmacy that custom made this cream for me as it is not available in drugstores in Canada. My gyno only gave me a prescription after I showed her the section in my book - The Vulvodynia Survival Guide, that talks about Estrace being helpful for women who aren't menopausal. One huge thing I've learned about talking to doctors, you don't dare say you read something on the internet that might help you, the internet has no credibility with them. They seem to be more open to information that came from a published source. I also sometimes get the feeling that the doctor's egos prevent them from listening to something their patient has said because how could the patient know something they didn't. It's too bad I have to walk on eggshells with these doctors to protect their egos but you do what you have to. I must say my family doctor has been wonderful. She even hugged me when I cried the first time in her office. I've discovered that the doctors appreciate humor. I started calling my condition "fire crotch" and got a laugh out of all of them. I figure they need a break from me crying in their offices all the time! As we all know, the mental anguish of this condition is just as bad as the pain. We don't look sick and we have to act like we're fine in our day to day activities. I'm finding that I'm getting resentful on Monday when people come up to me and ask how my weekend was. I feel like saying, "do you really want to know? I spent as much as my weekend as possible in a nightgown with no underwear and in the bathtub to try to cope and deal with my chronic pain. I don't do much socially anymore, my life now revolves around my pain and getting through each day." But of course I don't say that to my well intentioned coworkers, I just put on a fake smile, lie and say I had a wonderful weekend. But you know what? One day I am going to have wonderful weekends again. One thing that gives me hope is that I recovered from another condition a few years ago. For 6 years I had terribly itchy hives. I suffered every day with itchiness all over my body for 6 straight years and I thought that condition would never go away. After a lot of reading and experimenting with eliminating different foods, one day I tried not eating aspartame anymore and my hives went away! I really miss diet coke and gum but it's well worth the sacrifice. All to say, I know the same thing is going to happen with my vulvodynia. I'm going to keep researching and keep trying different treatments and I'm going to be healthy once again. What you focus on expands. Currently I'm seeing a pelvic floor specialist and this lady is great. She is so caring! What a treat it was on my first visit to have someone listen to me for an entire hour. It was like therapy! I'm doing the kegal excercises now for about 2 weeks and I think it's helping with my too frequent urination. I came back from doing errands last night and realized I didn't have to look for a restroom while I was out! I've also noticed at work that I'm not going every hour like I used to. It will be so nice to get back to a normal amount of peeing. It's stressful having to plan your day around bathroom visits. I'm going to keep doing the kegals, they are good for anybody to do anyhow. They say as you get older that incontinence can be a problem. Not me, one day I'll have the strongest pelvic muscles in the old folks home! Well ladies, thanks for "listening", I don't know anyone else with this condition. It's nice to "talk" to someone who can truly empathise with me. I'll keep reading your posts and in the mean time, I'll try to appreciate what's good in my life and look forward to a healthy future. :)
Commenthi, I'm 43 and I've had vulvodynia coupled with increase in urination since Nov. 2008. I've just been diagnosed in March of 2009. (after taking all the drugs for yeast and bladder infections etc) After reading a lot of the other guest's comments, I count myself lucky that it only took 5 months to find a name for this painful condition. I'm trying to stay positive and focus on the success stories and tell myself that this is only a temporary condition. I WILL get better! Some days I still cry in the bathtub and get discouraged but then I just try to get myself together and readjust my attitude. I really believe what you focus on expands so I'm going to concentrate on feeling well. I've noticed that my condition improves by about 50% when I'm relaxed and not sitting at my desk at work. For example, we went to Mexico last month and I spent most of the time laying on a beach lounge chair and there were times when I felt no pain at all! I guess that is a cure to this condition, stay on vacation! :) Like all of you I feel like you have to take charge of your own health and I've started doing my own research. In the beginning I just handed myself over to the mercy of the doctors (family doctor, infection specialist, gyno) and took whatever drug they gave me. Now I'm doing so much reading I feel like I know more about vulvodynia than they do! I'm still open to their suggestions of course but I no longer naively comply to everything they say. I'm encouraged by all of you who talk about healing naturally. I'm listening to my intuition too. I don't like taking drugs although if there were a miracle cure to take my pain away, admittedly I'd take it in a heartbeat. Currently I'm trying the Estrace cream. I'm lucky to live in Calgary where there is a specialty pharmacy that custom made this cream for me as it is not available in drugstores in Canada. My gyno only gave me a prescription after I showed her the section in my book - The Vulvodynia Survival Guide, that talks about Estrace being helpful for women who aren't menopausal. One huge thing I've learned about talking to doctors, you don't dare say you read something on the internet that might help you, the internet has no credibility with them. They seem to be more open to information that came from a published source. I also sometimes get the feeling that the doctor's egos prevent them from listening to something their patient has said because how could the patient know something they didn't. It's too bad I have to walk on eggshells with these doctors to protect their egos but you do what you have to. I must say my family doctor has been wonderful. She even hugged me when I cried the first time in her office. I've discovered that the doctors appreciate humor. I started calling my condition "fire crotch" and got a laugh out of all of them. I figure they need a break from me crying in their offices all the time! As we all know, the mental anguish of this condition is just as bad as the pain. We don't look sick and we have to act like we're fine in our day to day activities. I'm finding that I'm getting resentful on Monday when people come up to me and ask how my weekend was. I feel like saying, "do you really want to know? I spent as much as my weekend as possible in a nightgown with no underwear and in the bathtub to try to cope and deal with my chronic pain. I don't do much socially anymore, my life now revolves around my pain and getting through each day." But of course I don't say that to my well intentioned coworkers, I just put on a fake smile, lie and say I had a wonderful weekend. But you know what? One day I am going to have wonderful weekends again. One thing that gives me hope is that I recovered from another condition a few years ago. For 6 years I had terribly itchy hives. I suffered every day with itchiness all over my body for 6 straight years and I thought that condition would never go away. After a lot of reading and experimenting with eliminating different foods, one day I tried not eating aspartame anymore and my hives went away! I really miss diet coke and gum but it's well worth the sacrifice. All to say, I know the same thing is going to happen with my vulvodynia. I'm going to keep researching and keep trying different treatments and I'm going to be healthy once again. What you focus on expands. Currently I'm seeing a pelvic floor specialist and this lady is great. She is so caring! What a treat it was on my first visit to have someone listen to me for an entire hour. It was like therapy! I'm doing the kegal excercises now for about 2 weeks and I think it's helping with my too frequent urination. I came back from doing errands last night and realized I didn't have to look for a restroom while I was out! I've also noticed at work that I'm not going every hour like I used to. It will be so nice to get back to a normal amount of peeing. It's stressful having to plan your day around bathroom visits. I'm going to keep doing the kegals, they are good for anybody to do anyhow. They say as you get older that incontinence can be a problem. Not me, one day I'll have the strongest pelvic muscles in the old folks home! Well ladies, thanks for "listening", I don't know anyone else with this condition. It's nice to "talk" to someone who can truly empathise with me. I'll keep reading your posts and in the mean time, I'll try to appreciate what's good in my life and look forward to a healthy future. :)
Commenthi, I'm 43 and I've had vulvodynia coupled with increase in urination since Nov. 2008. I've just been diagnosed in March of 2009. (after taking all the drugs for yeast and bladder infections etc) After reading a lot of the other guest's comments, I count myself lucky that it only took 5 months to find a name for this painful condition. I'm trying to stay positive and focus on the success stories and tell myself that this is only a temporary condition. I WILL get better! Some days I still cry in the bathtub and get discouraged but then I just try to get myself together and readjust my attitude. I really believe what you focus on expands so I'm going to concentrate on feeling well. I've noticed that my condition improves by about 50% when I'm relaxed and not sitting at my desk at work. For example, we went to Mexico last month and I spent most of the time laying on a beach lounge chair and there were times when I felt no pain at all! I guess that is a cure to this condition, stay on vacation! :) Like all of you I feel like you have to take charge of your own health and I've started doing my own research. In the beginning I just handed myself over to the mercy of the doctors (family doctor, infection specialist, gyno) and took whatever drug they gave me. Now I'm doing so much reading I feel like I know more about vulvodynia than they do! I'm still open to their suggestions of course but I no longer naively comply to everything they say. I'm encouraged by all of you who talk about healing naturally. I'm listening to my intuition too. I don't like taking drugs although if there were a miracle cure to take my pain away, admittedly I'd take it in a heartbeat. Currently I'm trying the Estrace cream. I'm lucky to live in Calgary where there is a specialty pharmacy that custom made this cream for me as it is not available in drugstores in Canada. My gyno only gave me a prescription after I showed her the section in my book - The Vulvodynia Survival Guide, that talks about Estrace being helpful for women who aren't menopausal. One huge thing I've learned about talking to doctors, you don't dare say you read something on the internet that might help you, the internet has no credibility with them. They seem to be more open to information that came from a published source. I also sometimes get the feeling that the doctor's egos prevent them from listening to something their patient has said because how could the patient know something they didn't. It's too bad I have to walk on eggshells with these doctors to protect their egos but you do what you have to. I must say my family doctor has been wonderful. She even hugged me when I cried the first time in her office. I've discovered that the doctors appreciate humor. I started calling my condition "fire crotch" and got a laugh out of all of them. I figure they need a break from me crying in their offices all the time! As we all know, the mental anguish of this condition is just as bad as the pain. We don't look sick and we have to act like we're fine in our day to day activities. I'm finding that I'm getting resentful on Monday when people come up to me and ask how my weekend was. I feel like saying, "do you really want to know? I spent as much as my weekend as possible in a nightgown with no underwear and in the bathtub to try to cope and deal with my chronic pain. I don't do much socially anymore, my life now revolves around my pain and getting through each day." But of course I don't say that to my well intentioned coworkers, I just put on a fake smile, lie and say I had a wonderful weekend. But you know what? One day I am going to have wonderful weekends again. One thing that gives me hope is that I recovered from another condition a few years ago. For 6 years I had terribly itchy hives. I suffered every day with itchiness all over my body for 6 straight years and I thought that condition would never go away. After a lot of reading and experimenting with eliminating different foods, one day I tried not eating aspartame anymore and my hives went away! I really miss diet coke and gum but it's well worth the sacrifice. All to say, I know the same thing is going to happen with my vulvodynia. I'm going to keep researching and keep trying different treatments and I'm going to be healthy once again. What you focus on expands. Currently I'm seeing a pelvic floor specialist and this lady is great. She is so caring! What a treat it was on my first visit to have someone listen to me for an entire hour. It was like therapy! I'm doing the kegal excercises now for about 2 weeks and I think it's helping with my too frequent urination. I came back from doing errands last night and realized I didn't have to look for a restroom while I was out! I've also noticed at work that I'm not going every hour like I used to. It will be so nice to get back to a normal amount of peeing. It's stressful having to plan your day around bathroom visits. I'm going to keep doing the kegals, they are good for anybody to do anyhow. They say as you get older that incontinence can be a problem. Not me, one day I'll have the strongest pelvic muscles in the old folks home! Well ladies, thanks for "listening", I don't know anyone else with this condition. It's nice to "talk" to someone who can truly empathise with me. I'll keep reading your posts and in the mean time, I'll try to appreciate what's good in my life and look forward to a healthy future. :)
CommentThis is to Leah, I suffered with vagina pain for about 6 months and then I went to a new obg. and she told me I had lichen scelorsus. If you look up the meaning of vulvodynia you will see it means pain in the vulva. But there are many different diagnosis. Do you know what your's is. I no longer get my period so therefore it is my lack of hormones. After many different types of cremes, I went to a dermatologist and he put me on a steroid creme which has helped. But I cant use it all the time because it can cause more thinning. I jsut started with a hormone creme I have been using the steroid creme for several months. ALso, i use A & D ointment that helps with the pain. At one point I couldnt wear underwear or even sit in the bath tube. That is better I do believe in your expand theory although it is not something I have practiced at this point. My derm said this could just go away like it came. I will be looking for your posting. Dottie
Comment(part one of two) hi, I'm 43 and I've had vulvodynia coupled with increase in urination since Nov. 2008. I've just been diagnosed in March of 2009. (after taking all the drugs for yeast and bladder infections etc) After reading a lot of the other guest's comments, I count myself lucky that it only took 5 months to find a name for this painful condition. I'm trying to stay positive and focus on the success stories and tell myself that this is only a temporary condition. I WILL get better! Some days I still cry in the bathtub and get discouraged but then I just try to get myself together and readjust my attitude. I really believe what you focus on expands so I'm going to concentrate on feeling well. I've noticed that my condition improves by about 50% when I'm relaxed and not sitting at my desk at work. For example, we went to Mexico last month and I spent most of the time laying on a beach lounge chair and there were times when I felt no pain at all! I guess that is a cure to this condition, stay on vacation! :) Like all of you I feel like you have to take charge of your own health and I've started doing my own research. In the beginning I just handed myself over to the mercy of the doctors (family doctor, infection specialist, gyno) and took whatever drug they gave me. Now I'm doing so much reading I feel like I know more about vulvodynia than they do! I'm still open to their suggestions of course but I no longer naively comply to everything they say. I'm encouraged by all of you who talk about healing naturally. I'm listening to my intuition too. I don't like taking drugs although if there were a miracle cure to take my pain away, admittedly I'd take it in a heartbeat. Currently I'm trying the Estrace cream. I'm lucky to live in Calgary where there is a specialty pharmacy that custom made this cream for me as it is not available in drugstores in Canada. My gyno only gave me a prescription after I showed her the section in my book - The Vulvodynia Survival Guide, that talks about Estrace being helpful for women who aren't menopausal. One huge thing I've learned about talking to doctors, you don't dare say you read something on the internet that might help you, the internet has no credibility with them. They seem to be more open to information that came from a published source. I also sometimes get the feeling that the doctor's egos prevent them from listening to something their patient has said because how could the patient know something they didn't. It's too bad I have to walk on eggshells with these doctors to protect their egos but you do what you have to. I must say my family doctor has been wonderful. She even hugged me when I cried the first time in her office. I've discovered that the doctors appreciate humor. I started calling my condition "fire crotch" and got a laugh out of all of them. I figure they need a break from me crying in their offices all the time! As we all know, the mental anguish of this condition is just as bad as the pain. We don't look sick and we have to act like we're fine in our day to day activities. I'm finding that I'm getting resentful on Monday when people come up to me and ask how my weekend was. I feel like saying, "do you really want to know? I spent as much as my weekend as possible in a nightgown with no underwear and in the bathtub to try to cope and deal with my chronic pain. I don't do much socially anymore, my life now revolves around my pain and getting through each day." But of course I don't say that to my well intentioned coworkers, I just put on a fake smile, lie and say I had a wonderful weekend. But you know what? One day I am going to have wonderful weekends again. One thing that gives me hope is that I recovered from another condition a few years ago. For 6 years I had terribly itchy hives. I suffered every day with itchiness all over my body for 6 straight years and I thought that condition would never go away. After a lot of reading and experimenting with eliminating different foods, one day I tried not eating aspartame anymore and my hives went away! I really miss diet coke and gum but it's well worth the sacrifice. All to say, I know the same thing is going to happen with my vulvodynia. I'm going to keep researching and keep trying different treatments and I'm going to be healthy once again. What you focus on expands. Currently I'm seeing a pelvic floor specialist and this lady is great. She is so caring! What a treat it was on my first visit to have someone listen to me for an entire hour. It was like therapy! I'm doing the kegal excercises now for about 2 weeks and I think it's helping with my too frequent urination. I came back from doing errands last night and realized I didn't have to look for a restroom while I was out! I've also noticed at work that I'm not going every hour like I used to. It will be so nice to get back to a normal amount of peeing. It's stressful having to plan your day around bathroom visits. I'm going to keep doing the kegals, they are good for anybody to do anyhow. They say as you get older that incontinence can be a problem. Not me, one day I'll have the strongest pelvic muscles in the old folks home! Well ladies, thanks for "listening", I don't know anyone else with this condition. It's nice to "talk" to someone who can truly empathise with me. I'll keep reading your posts and in the mean time, I'll try to appreciate what's good in my life and look forward to a healthy future. :)
CommentHello everyone, I am new to this site. I am 64 years old and had this terrible burning in the vulva. It took me 8 months to find out I have Lichen Scelrosus. Does anyone suffer from this type of condition? And if so, please share what is being done for you. I would like to compare what my Doctor has given me. Thanks new to site
CommentHello everyone, I am new to this site. I am 64 years old and had this terrible burning in the vulva. It took me 8 months to find out I have Lichen Scelrosus. Does anyone suffer from this type of condition? And if so, please share what is being done for you. I would like to compare what my Doctor has given me. Thanks new to site
CommentDottie: I'm sorry, I just saw your posting from 3/31. I have not been on this site in a while. I find that reading everyone's stories about years of pain was too depressing for me. I've been seeking counseling for this deep depression I'm in. So my posts on this site might be sporatic. As for your question about the Estrogen (Estrace) cream. I only put a dab on a nighttime before bed. It's been just over two weeks and I don't feel any better. I have a follow-up appointment in early May. But I'll keep doing what the doctor instructed until then. I hope to someday post that the pain is gone. Wouldn't that be a happy day?!!!!!
CommentDottie: I'm sorry, I just saw your posting from 3/31. I have not been on this site in a while. I find that reading everyone's stories about years of pain was too depressing for me. I've been seeking counseling for this deep depression I'm in. So my posts on this site might be sporatic. As for your question about the Estrogen (Estrace) cream. I only put a dab on a nighttime before bed. It's been just over two weeks and I don't feel any better. I have a follow-up appointment in early May. But I'll keep doing what the doctor instructed until then. I hope to someday post that the pain is gone. Wouldn't that be a happy day?!!!!!
CommentDottie: I'm sorry, I just saw your posting from 3/31. I have not been on this site in a while. I find that reading everyone's stories about years of pain was too depressing for me. I've been seeking counseling for this deep depression I'm in. So my posts on this site might be sporatic. As for your question about the Estrogen (Estrace) cream. I only put a dab on a nighttime before bed. It's been just over two weeks and I don't feel any better. I have a follow-up appointment in early May. But I'll keep doing what the doctor instructed until then. I hope to someday post that the pain is gone. Wouldn't that be a happy day?!!!!!
CommentTO SUSAN, That's perfectly O K. I truly understand your depression and fear. I am in that same state of mind. I am trying not to let the depression get me. I have good days and bad days. I used a steroid creame and I just started with the Estrace. We can all pray for each other and share our experiences. I am so sorry for all of us but I do think there are a lot of success stories, but there just not posting Dottie
CommentTO SUSAN, That's perfectly O K. I truly understand your depression and fear. I am in that same state of mind. I am trying not to let the depression get me. I have good days and bad days. I used a steroid creame and I just started with the Estrace. We can all pray for each other and share our experiences. I am so sorry for all of us but I do think there are a lot of success stories, but there just not posting Dottie
CommentFOR HILLARY, I am new here and have been reading a lot of postings. I read your's that said you may see a Dr. from Drexel. I was wondering if you had made that appointment and if so could you share your experiences. Thanks
CommentHi everyone, haven't posted here in quite a while. I wanted to pose a question that I know I have asked before...does anyone have severe itching around the hair area? I would compare it to any itchy sunburn. It comes and goes, and bothers me the most at night. I'm just wondering what to use on it. Nothing over the counter seems to help. Does anyone have similar issues? P.S. I just found out I'm pregnant so I'm sure I'm limited on what I can use. Thanks, Holly
CommentHELLO SUSAN, I have followed your advice from your last posting to me in March. How are you feeling since we last spoke. I have had some improvement. I hope you have too. Dottie
CommentHello Dottie. You know how it goes...good days and bad. Today and yesterday have been very good. But prior to that the pain was getting bad and my depression was overwhelming. I've been referred to a therapist to help deal with the depression and anxiety and it's definitely making me feel more optimistic. The anxiety I feel about the pain just makes it worse...too much stress. And I focus on it constantly. So she has put me on an anti-anxiety medication that she said should start to work within about 5 days. I've also had IBS for many years and my stomach hurts everyday because I'm so stressed about the Vulvodynia. So she said this medication should help with both of those issues. Just hearing that is helping. I'm also trying to think more positively. I'm forcing the thoughts in my head that "I WILL get better. I can handle this. I'm strong enough. I will not let this get me down". Even though what I feel, most of the time, is the exact opposite. Based on my counselor's suggestion, I'm also keeping a journal. She said there have been too many studies that document the benefits of keeping a journal. Just get out your frustrations of your feelings. Don't worry about writing, "Today I went to work, blah, blah, blah". Write "I HATE DEALING WITH THIS" and "WHY DO I HAVE TO GO THROUGH THIS". Whatever raw emotions you're feeling. I don't think I will instantly see the benefits of this, but I'm giving it a try and in the long term maybe it will help. As for the vulvodynia, as I said, good days and bad. My therapist was quite familiar with the condition and said at least I'm on the right track finding a specialist. Finding the right doctor is your best hope for getting well. My follow-up appointment with the Gyn is May 5th, so I'll have more medical info at that time. In the meantime, if you need anything or have any questions, please let me know. Obviously I'm not an expert. But I would be happy to share any and all information I receive from my doctors. Don't be afraid to ask. Please take care....
CommentTO SUSAN-----Hi Susan, I am so glad to hear from you. It is so strange that you mentioned a journal. I started writing down my feelings about a week ago. It does help with the frustration, although my husband is a great support for me. He understand's that I have too much pain for sex and he tries talking and even joking with me and it does help. I use xanax for my anxiety right now and that does help. One thing you didn't mention. Are you still using the Estrace Creme? Hope to hear from you soon!!!!!! Dottie
CommentHello Dottie. Yes, I'm still using the Estrace cream, once every night before bed. And then, of course, the anti-depressants and the anti-anxiety pills. I talked to my therapist today because she wanted to know how I was handling the anti-anxiety pills. I told her the Vulvodynia hasn't been too bad the last couple days, but I wasn't sure it was because of those meds. Since there are good days and bad, it's really hard to tell what, if anything, is truly making it better. The real test will be the next time I get my period. That's always the worst since all of that is an irritant. She told me to keep a journal of the pain as well, which I was already doing. I actually log: 1) what I ate and drank that day, 2) the pains I was having and how bad they were, and 3) my mood. I figure maybe I'll start to see a pattern if I put it all down. BTW, I also just found this fantastic little "journal" at Walgreens (but it's a Hallmark book according to the back cover). It's called "A Mother's Legacy: Your Life Story in Your Own Words". It's not blank pages, but actually asks questions starting with the beginning of your life. The basics, where were you born, etc. Then it moves on to childhood, family life, education, work, love & marriage, motherhood, celebrations and life events. I'm not a mother, but don't let the title fool you. It's really a journal of your life to share with your family or whomever you choose. If you get a chance and see it at a store, flip through. I think it's a really good pick-me-up. It feels like less of a chore than the other journal I keep. I'm glad to hear your husband is being so supportive. Mine has been wonderful as well. At first this was difficult for him to understand, but he has really come around and has been so supportive. Really takes off some of the stress, doesn't it?
CommentHello again Susan, I will look for that journal tomorrow. I want to share something that happened to me today. It may make you laught a little. I had to attend a luncheon today and my girlfriend that was with me of course, knows the problem I am having. When it was time to eat there were several seating options so we chose the bar stools and of course I stood up. The table was high so it worked out fine. The waitress came by and said " You can sit on the stools you know, you won't fall down" It's a good thing I had a couple of drinks by that time or I could have answered her in a nasty way but I didn't. I just said " Oh thanks but I Have a BAD BACK!!!!" Maybe someday I can sit like a normal person. My regimen right now is Estrace 2 to 3 x a week, lubriderm in between and cortisone 2 to 3x a week. There was a time when I couldn' wear underwear and the burn was constant. I go to my derm in a few weeks also, hopefully we can continue to talk. I hope you got a little laugh at my tale of today. Dottie
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CommentTO SUSAN, Hi Susan check out my posting to you 4/16/09 Amzy
CommentTO SUSAN== SORRY ABOUT THAT SUSAN I WANTED YOU TO CHECK OUT MY POSTING AND ALSO ANOTHER SITE MEMBER --- AMZY
CommentHello Dottie. Cute story. Funny, then again, not really...right? This is so strange because it's not something you can tell just anyone. You can tell a waitress you have a bad back, but you can't say my vagina hurts! Everyone at work knows something is wrong with me, but I'm not telling them exactly what. And since I've been there they've heard multiple stories about me going through fertility treatments, having a miscarriage, fibroid tumors, etc. But THIS....I'm not telling them. They know it's something private so they don't ask. But they must be thinking "what could possibly be worse than all the other stuff she's been through that she won't tell us?" I love them, but I'm sure they don't want to hear about this. Your waitress, on the other hand....would have been pretty funny to see the look on her face if had told her the truth! :-)
CommentHELLO SUSAN, Yes you are so right. That waitress would have probably dropped all her dishes. But trust me, If I hadn/t had a few drinks I may have dropped her with one punch. As far as work, take it from my experience people at work DONT want to hear about it. WHile I worked I tried to ask people about it because I work in a hospital.and they really didnt care. I am now on temporary disability because it is too painful to sit at the computer all day and it makes it much worse. Talk soon! Dottie
CommentHi, I want to share my experience with vulvodynia andI hope it helps someone out there. I was diagnosed with vulvodynia about 18 mos. ago. It was so bad that I was practically bedridden for about 3 mo. I was referred to the University of Michigan by the second gynacologist I saw. The University of Michigan has one of the largest research programs in the country. It also has a Vulvar Clinic in Ann Arbor (phone # 734-763-6295) and another satellite clinic in Dexter, Mi, (phone # 734-426-2796) which I went to. The clinic was about a 5 hour drive from my house, but it was worth it. My first visit was about an hour long and included some lab work. This visit cost about $500, which I thought was very reasonable. After this appointment , I kept in contact with a research assistant by phone, sometimes weekly, and she addressed any problems or changes in medication. They worked long and hard with me because I had alot of problems taking the medications. It takes more than medication to overcome vulvodynia. I improved my diet (eliminating a lot of sweets which cause imflamation, staying away from additives and artificial sweetners). I also started taking supplements especially those that are necessary for healthy nerves and those that combat imflamation. Also a chiropractor was involved in my treatment. I saw him initially two times per week for about 6 weks and then less frequently. Cost wise this ran about $1500. Last but not least, is the physical therapist who is helping me now with the last bit a residual pain that I have. It has to be a women's health physical therapist. I am seeing one in Anderson, In (phone #765-298-3500) So everyone out there DON'T GIVE UP. Beg or borrow the money if you have to, but GET YOUR LIFE BACK. - - Kathy
CommentTO KATHY: I also was seen at the University Of Michigan's vulvar clinic. Unfortunately I live in Ohio (about a 45 min drive) and was unable to get any testing approved due to being out of state. I had to see a Resident there, who would come in and out after discussing my case with a medical doctor. I was diagnosed with vulvodynia, but in addition have some kind of skin condition/rash externally that they were unable to diagnose due to no testing being appoved. It has been going on two years now since I was seen there. They were very nice, but I still feel unsure about my diagnosis. I was on cymbalta for about 5 months, which did help and heal my pain. I am now off of it and newly pregnant. I still have the skin condition that no one can seem to figure out. It's very frustrating. Anyways, just wanted to share! Holly
CommentTO KATHY: I also was seen at the University Of Michigan's vulvar clinic. Unfortunately I live in Ohio (about a 45 min drive) and was unable to get any testing approved due to being out of state. I had to see a Resident there, who would come in and out after discussing my case with a medical doctor. I was diagnosed with vulvodynia, but in addition have some kind of skin condition/rash externally that they were unable to diagnose due to no testing being appoved. It has been going on two years now since I was seen there. They were very nice, but I still feel unsure about my diagnosis. I was on cymbalta for about 5 months, which did help and heal my pain. I am now off of it and newly pregnant. I still have the skin condition that no one can seem to figure out. It's very frustrating. Anyways, just wanted to share! Holly
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentHello everyone, I have contributed to these guestbooks since 1995. This illness has changed the course of my life, but I have accepted that.I've had times when I am almost pain free, and times when I'm in agony...like now. I was doing fine and then I decided to put on a pair of pantyhose. Why I did this , I wonder. I know that I get symptoms from them. I think I was hoping I'd get away w/ it this time...I'd had months of almost pain free days. By evening I felt a twinge of soreness, so I ripped the pantyhose off and slathered myself w/ antifungal cream. Too late. I'm sore and swollen today. What is it about the pantyhose that can just kill you? I'm not even sure that it is a yeast infection. I'm so upset. Yesterday at this time I was fine. Now, I'm in pain...severe pain. I can't sit ,etc. What do you members think? Thank you.
CommentDear everyone, I have been contributing to the guestbook since 1995. This illness has drastically altered my life, but I haveaccepted it. I had some good winter mmonths withvery little pain. Yesterday, I wore pantyhose all day. I figured I was well enough to handle it now....WRONG!!!!!! I am sore and swollen and in a lot of pain. I slathered on an antifungal as soon a I ripped the pantyhose off, but NADA. I'm not even sure it is a fungus infection..Any similar situations? Any advice? Thnks....Sara
CommentAre there any single ppl here dealing with vulvodynia (vestibulitis) and dating? I am considering getting the surgery because I can't see putting my life on hold for months on end waiting for one of these treatments to work. Any ideas or support are welcome! This site has been a wonderful support. Thanks to all who have posted and best wishes for brighter days for us all. :) Robin
CommentAre there any single ppl here dealing with vulvodynia (vestibulitis) and dating? I am considering getting the surgery because I can't see putting my life on hold for months on end waiting for one of these treatments to work. Any ideas or support are welcome! This site has been a wonderful support. Thanks to all who have posted and best wishes for brighter days for us all. :) Robin
CommentAre there any single ppl here dealing with vulvodynia (vestibulitis) and dating? I am considering getting the surgery because I can't see putting my life on hold for months on end waiting for one of these treatments to work. Any ideas or support are welcome! This site has been a wonderful support. Thanks to all who have posted and best wishes for brighter days for us all. :) Robin
CommentAre there any single ppl here dealing with vulvodynia (vestibulitis) and dating? I am considering getting the surgery because I can't see putting my life on hold for months on end waiting for one of these treatments to work. Any ideas or support are welcome! This site has been a wonderful support. Thanks to all who have posted and best wishes for brighter days for us all. :) Robin
CommentThis is to Dr. Glazer...I just wanted to say thanks! I have had Vulvodynia for many years and 2 years I have been almost pain free! I spoke with Dr. Glazer via chat when the website first established. This brief discussion made me realize that I needed to seek a better understanding of vulvodynia and seek specialists. After trying numerous therapy sessions, presciptions combinations, etc...I felt hopeless. I felt like I was destined to just get by and just live with the constant pain. I was then the I descided to try a prescription my pain management doctor suggested...Cymbalta. I was extremely skeptical b/c it was typically used with vulvodynia pain. However, after several months...the pain DISAPPEARED! I am writting this b/c I know what it feels like to not have any hope of a normal life...and I want to say that there is hope! So hang in there all...and be open to trying different things b/c something is bound to work for you!! (For me...my drug combo is Lyrica and Cymbalta together...it reeeally works!!)
CommentThis is to Dr. Glazer...I just wanted to say thanks! I have had Vulvodynia for many years and 2 years I have been almost pain free! I spoke with Dr. Glazer via chat when the website first established. This brief discussion made me realize that I needed to seek a better understanding of vulvodynia and seek specialists. After trying numerous therapy sessions, presciptions combinations, etc...I felt hopeless. I felt like I was destined to just get by and just live with the constant pain. I was then the I descided to try a prescription my pain management doctor suggested...Cymbalta. I was extremely skeptical b/c it was typically used with vulvodynia pain. However, after several months...the pain DISAPPEARED! I am writting this b/c I know what it feels like to not have any hope of a normal life...and I want to say that there is hope! So hang in there all...and be open to trying different things b/c something is bound to work for you!! (For me...my drug combo is Lyrica and Cymbalta together...it reeeally works!!)
CommentThis is to Dr. Glazer...I just wanted to say thanks! I have had Vulvodynia for many years and 2 years I have been almost pain free! I spoke with Dr. Glazer via chat when the website first established. This brief discussion made me realize that I needed to seek a better understanding of vulvodynia and seek specialists. After trying numerous therapy sessions, presciptions combinations, etc...I felt hopeless. I felt like I was destined to just get by and just live with the constant pain. I was then the I descided to try a prescription my pain management doctor suggested...Cymbalta. I was extremely skeptical b/c it was typically used with vulvodynia pain. However, after several months...the pain DISAPPEARED! I am writting this b/c I know what it feels like to not have any hope of a normal life...and I want to say that there is hope! So hang in there all...and be open to trying different things b/c something is bound to work for you!! (For me...my drug combo is Lyrica and Cymbalta together...it reeeally works!!)
CommentHas anyone had the modified vestibulectomy by Dr. Martha Goetsch at OHSU? I was diagnosed 6 years ago and none of the medications have helped and am considering having the surgery... please let me know if you've had surgery and if it helped. Thank you so much!!!!
CommentI am 48 years old and had a normal sex life until I began seeing my current partner 8 years ago. For the first 3 years I was diagnosed with bacterial infections and treated for that. After each treatment I would feel better and be able to have sex with a lubricant a couple of times and I would end up going to my doctor and being treated, again, for the same thing. Finally I was feeling a burning pain while just sitting and I went to the Dr. who examined me and told me that everything looked healthy and I have vulvadynia. I began taking amitriptyline and was able to have sex using lubricants for about 4 years. After that I would have increased stabbing pain when my partner tried to penetrate and also mild stinging during manual stimulation. My issue took a toll on our relationship and about a year ago attempting penetration was horribly painful. We tried a month later with the same result. Finally, last week, we tried again and felt the same severe stabbing pain as if there was simply NO vaginal opening to be penetrated. For years I figured I’d just never have sex again and accepted it. I am at this point very frustrated and actually sad about my condition. Your website gave me some good information. I took the survey, though some questions I had an answer for that weren’t one of the choices. Thank you for your time.
CommentTo Diana: Please don't be upset that a man is responding to your post. I have been reading and posting here since guestbook thirteen. My wife had several of the Vulvodynia symptoms including yeast and UTI's, stabbing pain and thinning and tearing of the vulva at the six oclock position. If you have the time try and read as many of the past guestbooks, they are very enlightening. We discovered the stabbing pain was due to a rectocel ( bulging between the vagina and rectum, but since your pain is right at the entrance it may be Lichen's sclerosis also referred to as the "keyhole disease) because the entrance of the Vulva narrows . There are some medications which help a little if it is the Lichen's. Best of luck and stay strong.
CommentTo Diana: Please don't be upset that a man is responding to your post. I have been reading and posting here since guestbook thirteen. My wife had several of the Vulvodynia symptoms including yeast and UTI's, stabbing pain and thinning and tearing of the vulva at the six oclock position. If you have the time try and read as many of the past guestbooks, they are very enlightening. We discovered the stabbing pain was due to a rectocel ( bulging between the vagina and rectum, but since your pain is right at the entrance it may be Lichen's sclerosis also referred to as the "keyhole disease) because the entrance of the Vulva narrows . There are some medications which help a little if it is the Lichen's. Best of luck and stay strong.
CommentTo Diana: Please don't be upset that a man is responding to your post. I have been reading and posting here since guestbook thirteen. My wife had several of the Vulvodynia symptoms including yeast and UTI's, stabbing pain and thinning and tearing of the vulva at the six oclock position. If you have the time try and read as many of the past guestbooks, they are very enlightening. We discovered the stabbing pain was due to a rectocel ( bulging between the vagina and rectum, but since your pain is right at the entrance it may be Lichen's sclerosis also referred to as the "keyhole disease) because the entrance of the Vulva narrows . There are some medications which help a little if it is the Lichen's. Best of luck and stay strong.
CommentTo Diana: Please don't be upset that a man is responding to your post. I have been reading and posting here since guestbook thirteen. My wife had several of the Vulvodynia symptoms including yeast and UTI's, stabbing pain and thinning and tearing of the vulva at the six oclock position. If you have the time try and read as many of the past guestbooks, they are very enlightening. We discovered the stabbing pain was due to a rectocel ( bulging between the vagina and rectum, but since your pain is right at the entrance it may be Lichen's sclerosis also referred to as the "keyhole disease) because the entrance of the Vulva narrows . There are some medications which help a little if it is the Lichen's. Best of luck and stay strong.
Commentjust want to share this in case it helps anyone. I have pain with intercourse at the 4 and 8 o'clock positions and vulvar burning all the time just at different intensities on any given day. I started soaking in a herbal mixture used as a perineal wash from this website.mamagoddessbirthshop The first day I soaked in it five times for 10-15 mins, then 3 times a day for the rest of the week. The burning went away and I was able to have intercourse relatively pain free( on a scale of one to ten, ten being the most painful, i would say a 1.) I was also doing kegel excercises everytime I thought of it, and applying almond oil and massaging the area after each soak. It hasn't cured the problem, and if I don't continue to soak once or twice a day the burning and pain come back but it certainly has provided some much needed relief (more than 8 years) the herb mixture is just steeped in some hot water and once it cools down i sit in it. the mixture has plantain, comfrey leaf, comfrey root, rosemary, yarrow, and calendula the owner of the business has been kind in letting me order the bulk pack instead of the smaller one listed on the webpage. One might think that it is just the water alone doing the work on the imflammed tissues, who knows for sure. I am just going to do what is working for me and share it in case it helps somebody else. It was reading through these guestbooks that gave me the idea to try this perineal wash so thankyou very much to everyone for sharing. i should also mention that i have officially been diagnosed with vulvar vestibulitis, IBS, and I have in the past had UTI and kidney infections, lower back pain and chronic right hip joint pain, and i do remember falling hard on the cross bar of a bike when i was a
Commentjust want to share this in case it helps anyone. I have pain with intercourse at the 4 and 8 o'clock positions and vulvar burning all the time just at different intensities on any given day. I started soaking in a herbal mixture used as a perineal wash from this website.mamagoddessbirthshop The first day I soaked in it five times for 10-15 mins, then 3 times a day for the rest of the week. The burning went away and I was able to have intercourse relatively pain free( on a scale of one to ten, ten being the most painful, i would say a 1.) I was also doing kegel excercises everytime I thought of it, and applying almond oil and massaging the area after each soak. It hasn't cured the problem, and if I don't continue to soak once or twice a day the burning and pain come back but it certainly has provided some much needed relief (more than 8 years) the herb mixture is just steeped in some hot water and once it cools down i sit in it. the mixture has plantain, comfrey leaf, comfrey root, rosemary, yarrow, and calendula the owner of the business has been kind in letting me order the bulk pack instead of the smaller one listed on the webpage. One might think that it is just the water alone doing the work on the imflammed tissues, who knows for sure. I am just going to do what is working for me and share it in case it helps somebody else. It was reading through these guestbooks that gave me the idea to try this perineal wash so thankyou very much to everyone for sharing. i should also mention that i have officially been diagnosed with vulvar vestibulitis, IBS, and I have in the past had UTI and kidney infections, lower back pain and chronic right hip joint pain, and i do remember falling hard on the cross bar of a bike when i was a
CommentHello everyone. I have vulvar lichen planus and I have a question...will my labia close up so that I will not be able to pee? I am currently searching for a Specialist in my area, but I would like to know this before I go in to see anyone! Thanks!
CommentJust found this site and it looks like it will be helpful. I have had burning pain since 10-08. It started in August 2008 with yeast and bacterial infections ( I saw 2 different physicians in the practice and one would say I had yeast and the other would say I had bacterial). My OB/GYN also increased by Premarin Cream to 3 times a weeks. It seems like the like medication I was given for a Bacterial infection really up me over the top and I have had problems every since then. I also took two different types of antibodics (Bactrim and Keflex) buring this time. A third OB/GYN put me on an estrogen patch in December. I have also seen a Dermatologist and he prescribed cortisone cream which has helped me some. The other thing that I have done is see an allergist. Along with other things I tested positive for Candidia. I am currently receiving allergy shots (including Candidia) and changing my diet. Everything I have tried has given me some symptom relief but nothing has really knocked the pain. I take Advil and benadryl for pain, with benadryl having always provided me with the most relief. I joined the National Vulvodynia Association several months ago and found a Vulvar Pain and Skin Disorder Clinic in Ashville, North Carolinia. I have an appointment in 2 1/2 weeks. I will be glad to finally have someone who can manage and coordinate my care. Every physician I have seens treats me based upon their standard practice but unfortunately it has come up short. thanks for listening.
CommentGreat website http://freemedicalhealth.com
CommentThis is for Kathy who visited the University of Michigan... could you elaborate on what type of testing they did? I called and made an appointment, but it is not until August and I will be traveling from Colorado. I just want to have as much information as possible. Thanks.
CommentHello everyone. Its been so so many years since I've been on this site. I began suffering with vulvodynia back in 1999 (I think). I have have had a partial vulvectomy back in 2001(i think) and I changed my diet and I've been doing well ever since. I came back on this site because my pain came back suddenly after eating some candy yams, wheat bread with 12 grains and omega 3 in it, and I ate some beans. Now the pain is crazy like I can feel my nerves acting all out of control down in my vulva area. So I have learned that that nerve pain is a sign that I had an allergic reaction to the food. When this happens, I drink a whole galon on distilled water in 1 day and that will flush my system out of the foods that I ate that game me allergic reactions. It will take about 2 days for it all to flush out and durring those couple days, It burns when I urinate. After the burning stops, I know that the allergens are gone and I can feel back to normal again as long as I stay away from the foods that my vulva is allergic to . I'm only telling you guys my story because food is my problem. They are so many reasons women get vulvodynia, and mine is food allergies. For those of you whos pain starts or gets worse right after you eat, you should consider changing your diet. I am on a sugar free, wheat/gluten free, low oxolate, low carb diet. It is very hard to live like this but I have now been doing so since 2001. It's tough but I can feel like a lady most of the time and I can even have sex (which I couldn't do for 3 years when I was first diagnosed and before I had the surgery and before I changed my diet.) Good luck to all you women out there. To Frank, it's good to see that you are still here for your wife. I don't know if you remember me or not but I use to post back in like 1999 or maybe 2000. Have a nice dayeveryone
CommentI can't ever seem to get on the chat site. Is anyone else having this problem? How can I get on to chat with other vulvodynia sufferers live? I've already sighn up and set up an account with yahoo. But still the chat page doesn't seem to be working
CommentTo Lynn: Yes, I remember you. Hard to believe how fast the time has passed. Glad you've figured out that food is the problem that triggers your pain. I think some of the Estrace may have contributed to my wife's breast cancer last year. She has the estrogen sensitive type and thankfully has recovered. I thought Vulvodynia was difficult for both she and I , but the whole cancer bout and follow up medication is far beyond that. She is taking tamoxifen to reduceher own estrogen and it has put her into menopause. What was a small paper cut like tear and thinning in one area is now much worse. I'm not complaining, just describing the complications of Vulvodynia and her current ordeal. I wish more women were aware of the serious cancer risks medications like Estrace and hormone replacement therapy pose. My best to you, Frank.
CommentI am 46 and over the last 6 to 12 months I have suffered with symptoms of burning sensations, itching especially at night or when lying down,dryness,rawness, some headaches, some abdominal pain. I have found this has been happening every month before my period over this period of time. Yeast infection has been ruled out every time. I thought it was all in my head till the full effects of this painful condition really kicked (literally) in. I have previously had the occasional Urinary Tract Infection and have had approx no more than 6 bouts of thrush in my lifetime so far. At first I thought it was a bart/gland issue, as I have suffered from this in the past,but it hasbeen diagnosed by my Doctor as Vulvar Vestibulitis. I have seen 1 Gyno who prescribed Benovate cream, this has made an improvement of approx 20% I still have all extremely irritable symptoms present. Doing - Salt baths, spritzing after urination, Using Calendula cream and Lucas Paw Paw Ointment (natural products). Have had some relief but not enough. Some days I feel like I am going crazy. I am a woman with needs and the pain is not worth it at the best of times. This is the start of hopefully working out some management plan with Doc/Gyno at this stage. But the worst is the feeling of hopelessness and depression that comes with this condition. The constant pain and not being able to cope with the day to day commitments, work and family I am finding hard. I am in constant contact with my Doc who has been very supportive. I am also fortunate to have a supportive partner - but for how long ? I am happy to find this site. I am in Brisbane/Queensland/Australia and would like to know if there are any support groups in the Brisbane area. If anyone knows, please feel free to email me. Sincerely Connie email: sullyconnie@hotmail.com
CommentWow, I am so glad that I found this site. I have been suffering off and on for months/years at a time since 2003. I had no idea that this condition even existed until a couple of weeks ago. A pattern has seemed to emerge in my life regarding this affliction. It all began, from what I can remember, in 2001. I was treated with antibiotics for some illness or other which gave me a yeast infection as do most broad spectrums( I believe it was doxycyclene). I used monistat for the yeast. After the treatment I was still having discomfort so I went back to the dr and he told me to use iodine/medicated douche for 7 days. Evrything seemed fine after that until a couple months later. I went swimming and the infection came back. I battled it for months and then got a severe case of ringworm. I was given antifungals but the vaginal problems continued. They would go away, but return as soon as I had sex with my boyfriend. Eventually we broke up and by the next summer my pain and irritaion had subsided. Until the next time I got VB or yeast, or UTI which was at least a couple times a year. I have been so frustrated by for almost ten years. The most recent onset was back in January of this year, a UTI. After I had taken a round of macrobids the pain continued. I went to an OBGYN and was given doxycyclence which of course gave me yeast. I have been treated for all three of these afflictions 3 time over since then and I'm still sitting on ice packs, not wearing pants and rarely leaving the house.UGH! I've been tested for all STDs. I did test possitive for HPV back in '98 but haven't had an outbreak. I'm am sick and tired of being sick and tired and it has made me feel some hope to see all of the women on this site. And here I thought I was the only one! I have an appointment with a specialist in Seattle, but I'm not from here I just happened to be visiting. It's not till July, so I'm staying with a friend until then. I live in Atlanta and was wondering if anyone knows about a Dr there that is knowledgable about vulvodynia as I was just diagnosed by a Dr. out here in WA? Thanks.
CommentHello all, I'm 27 years old and have been suffering from vulvodynia for about 4 years. I have been ok on amitriptyline 25mg, but suddenly i'm having a severe flair. I went off the amitriptyline for about 5 days to try cymbalta. cymbalta didn't work, and now the amitriptyline isn't stopping the pain. I'm on my 3rd day back on amitriptyline. Any advice?
CommentTo Erin, Wow does your story sound familiar. I have had this horrible thing for about 4 years now and it was triggered during a yeast infection that was treated by a number of antibiotics. I have tried several meds, surgery, PT and the only relief I find is my ice pack. I made an appointment with the vulvar clinic at the University of Michigan, but I live in Colorado and am looking at a huge expense. My thoughts are with you and everyone who suffers with this. To anyone who has been to the University of Michigan..... PLEASE post and let me know what kind of testing they do. I just want to make sure it's not another wasted effort Thanks
CommentTo Erin, Wow does your story sound familiar. I have had this horrible thing for about 4 years now and it was triggered during a yeast infection that was treated by a number of antibiotics. I have tried several meds, surgery, PT and the only relief I find is my ice pack. I made an appointment with the vulvar clinic at the University of Michigan, but I live in Colorado and am looking at a huge expense. My thoughts are with you and everyone who suffers with this. To anyone who has been to the University of Michigan..... PLEASE post and let me know what kind of testing they do. I just want to make sure it's not another wasted effort Thanks
CommentTo Erin, Wow does your story sound familiar. I have had this horrible thing for about 4 years now and it was triggered during a yeast infection that was treated by a number of antibiotics. I have tried several meds, surgery, PT and the only relief I find is my ice pack. I made an appointment with the vulvar clinic at the University of Michigan, but I live in Colorado and am looking at a huge expense. My thoughts are with you and everyone who suffers with this. To anyone who has been to the University of Michigan..... PLEASE post and let me know what kind of testing they do. I just want to make sure it's not another wasted effort Thanks
CommentTo Paige: Isn't this the most demoralizing condition if there ever was one? Geez. I had my first normal day with not even the slightest tinge of discomfort yesterday only to awake this morning with it right back in full force. I'm ready to jump out the window! I was just wondering what kind of meds, PT, and surgery you've tried. I've got a notebook full of things to try, but not sure where to start and since I have 2 more months till my appointment with "The Specialist", I thought I might go to a physical therapist or an acupuncturist. Hope you're feeling better along with all of the others on this site. Thank you!!!
CommentTo Paige: Isn't this the most demoralizing condition if there ever was one? Geez. I had my first normal day with not even the slightest tinge of discomfort yesterday only to awake this morning with it right back in full force. I'm ready to jump out the window! I was just wondering what kind of meds, PT, and surgery you've tried. I've got a notebook full of things to try, but not sure where to start and since I have 2 more months till my appointment with "The Specialist", I thought I might go to a physical therapist or an acupuncturist. Hope you're feeling better along with all of the others on this site. Thank you!!!
CommentTo Paige: Isn't this the most demoralizing condition if there ever was one? Geez. I had my first normal day with not even the slightest tinge of discomfort yesterday only to awake this morning with it right back in full force. I'm ready to jump out the window! I was just wondering what kind of meds, PT, and surgery you've tried. I've got a notebook full of things to try, but not sure where to start and since I have 2 more months till my appointment with "The Specialist", I thought I might go to a physical therapist or an acupuncturist. Hope you're feeling better along with all of the others on this site. Thank you!!!
CommentTo Paige: Isn't this the most demoralizing condition if there ever was one? Geez. I had my first normal day with not even the slightest tinge of discomfort yesterday only to awake this morning with it right back in full force. I'm ready to jump out the window! I was just wondering what kind of meds, PT, and surgery you've tried. I've got a notebook full of things to try, but not sure where to start and since I have 2 more months till my appointment with "The Specialist", I thought I might go to a physical therapist or an acupuncturist. Hope you're feeling better along with all of the others on this site. Thank you!!!
CommentTo Erin, I would have to agree with you! First, about 4 years ago I thought I had a yeast infection. After many meds and it not going away is when I realized this was something else. I truly believe it had to be one of the meds that has triggered this and won't let go. Since then I have tried clobetasol cream, premarian cream, calcium citrate, valium, elavil. The elavil worked at first, but in order to keep it working at had to keep upping the dosage. It made me gain weight, groggy and loopy. I had a partial vulvectomy to remove tissue. There was some relief, but whatever is causing this just keeps invading new tissue... does that make sense? I burn daily, the only relief is an ice pack. I tried PT... the sensor was so painful I don't know if could have worked or not?? I just HAVE to believe that there is something in my system that my body is rejecting. I have been to 2 "specialists" and I think it's just a guessing game for them as well. Take care.....
CommentTo Cheryl - I have suffered with vulvodynia for years and only recently discovered Dr. Glazer's website. Your email jumped out at me because I am also from the Chicagoland area. I pray you see this email and would so appreciate the name and telephone of the Gynecologist. I am so ready to walk into a doctor's office who has treated women for this problem.
CommentTo Cheryl - I have suffered with vulvodynia for years and only recently discovered Dr. Glazer's website. Your email jumped out at me because I am also from the Chicagoland area. I pray you see this email and would so appreciate the name and telephone of the Gynecologist. I am so ready to walk into a doctor's office who has treated women for this problem.
CommentHi Monica -- so glad to help. The Doctors in Chicago -- actually Skokie are Dr. Frank Tu and Dr. Sangeeta Senapati -- they are on Woods Drive right near Old Orchard Shopping Center 847-663-0540 -- check the internet. I saw Dr. Senapati because she was available first and she was wonderful -- I am 100% most days with not much problems at all. Both are wonderful -- their nurse is Marie. I hope they can help you and there is not a long wait. Good luck and keep me posted.
CommentHi Monica -- so glad to help. The Doctors in Chicago -- actually Skokie are Dr. Frank Tu and Dr. Sangeeta Senapati -- they are on Woods Drive right near Old Orchard Shopping Center 847-663-0540 -- check the internet. I saw Dr. Senapati because she was available first and she was wonderful -- I am 100% most days with not much problems at all. Both are wonderful -- their nurse is Marie. I hope they can help you and there is not a long wait. Good luck and keep me posted.
CommentHi Monica -- so glad to help. The Doctors in Chicago -- actually Skokie are Dr. Frank Tu and Dr. Sangeeta Senapati -- they are on Woods Drive right near Old Orchard Shopping Center 847-663-0540 -- check the internet. I saw Dr. Senapati because she was available first and she was wonderful -- I am 100% most days with not much problems at all. Both are wonderful -- their nurse is Marie. I hope they can help you and there is not a long wait. Good luck and keep me posted.
CommentHi Monica -- so glad to help. The Doctors in Chicago -- actually Skokie are Dr. Frank Tu and Dr. Sangeeta Senapati -- they are on Woods Drive right near Old Orchard Shopping Center 847-663-0540 -- check the internet. I saw Dr. Senapati because she was available first and she was wonderful -- I am 100% most days with not much problems at all. Both are wonderful -- their nurse is Marie. I hope they can help you and there is not a long wait. Good luck and keep me posted.
CommentHi All, I started having vulvar problems after going on the pill 12 years ago. Apparently the pills gave me a yeast infection that I wasn't aware of since I had no "normal" symptoms. After a few months of not feeling right, I set up a dr. appointment; turns out the yeast was so bad that I also ended up with a bacterial infection. The antibiotic given to me to cure the bacteria caused the yeast to get worse. Finally, after several months, I didn't have anymore infections, yet instead I was always feeling terrrible. I would burn, sting, tingle, feel like someone was trying to stretch my vulva, among other things. I ended up going to at least 6 different ob/gyn's; I even went to one who did a vulvar vestibulectomy. That seemed to take away some of the discomfort however he ended up scraping away so much of my tissue at the 5-7:00 region, that now every single time I have intercourse, it bleeds. Since I was still having pain and discomfort, he said he couldn't do anything else for me, so I was in search of another doctor. The lady I go to now is phenomenal! She really takes the time to sit with you and talk about how I'm feeling; she doesn't just come in and 5 minutes later she's out the door. She told me that they still don't really understand how/why this occurs -she said that some believe it could start from yeast infections. She knows that I had a severe one that just woudn't go away which makes her wonder if I got it because of inserting all that medicine into me. She strongly believes in prescribing diflucan pills for infections rather than inserting all those chemicals directly into a person. She put me on Elavil 25 mg which didn't help much, so she ended up bumping me up to 175 mg a day; still I wasn't feeling great. She kept me on the elavil and said she has had several of her patients take Lyrica which seems to do wonders. Of course my insurance company wouldn't pay for it. She spoke on the phone to them several times, faxed my medical history to them, wrote to them, -nothing. She suggested I try writing to them to see if they would change their mind. Luckily, 2-3 days after I saw her, we received a letter in the mail from my husband's place of employment stating they were switching from GHP to United Healthcare starting the following month! I wondered if they would allow me the medicine and they did. I take 150 mg of Lyrica in addition to the Elavil and it has made all the difference in the world! I now only have issues occasionally. The bad part though is everytime I have intercourse with my husband, I tear and bleed at the 6:00 region because that other dr cut and scraped so much of the tissue away. She has suggested that I try to use olive oil as a lubricant to see if that helps, but it still tears. Two days later, it is healed up again, so I don't mind too much -just as long as the rest of the pain is gone. Granted, I still have some discomfort at times -maybe a few hours one day every other month. NOTHING like before. So, please talk to your dr about the use of Lyrica-finally after 12 years I have found relief. If anyone lives in the St. Louis region and is interested in the name of the dr I go to, please feel free to e-mail me! Good luck!!!
CommentTo Kim, What is Lyrica typically used for? Also, do you think it would work without the Elavil? I have tried Elavil a number of times and just can't tolerate the side effects. Thanks for any help you can give!
CommentTo Kim: I have been posting here since Guestbook 13, describing my wife's recurrent papercut like tear at the six o'clock position and sharing information. Her tearing seemed to start several months after she stopped taking The Pill, which she had been on for twenty years! Doctors who don't understand the tearing assume lack of natural lubrication is the problem (which it is not), and suggest olive oil, Vitamin E oil, or other lubricants. My wife and I have found that while silicone based lubricant helps slightly, avoiding certain positions during sex and going slowly are also useful. I had hoped after all these years more would be discovered as to the cause, but doctors are still in the dark. My wife's hormone levels were within normal range, yet several doctors prescribed Estrace whcih may have contributed to her Breast Cancer last year. I don't want to scare anyone, I just want you all to be cautious when taking medications. I wish you all pain free days and good health.
CommentHi Paige & Frank! Paige -Typically Lyrica is used for the management of pain in patients who have fibromyalgia (not sure if I spelt that correctly). I don't know how long it has been on the market, but I've been taking it since last August (08). When I first started seeing my dr., she gave me a vulvar guideline she wanted me to follow: only wear white cotton underwear, (she said if you like colored underwear to stick to the light pastel colors), no pantyhose, wash all my clothes in "All Free & Clear", no softener or dryer sheets, no deodorant tampons, no KY Jelly lubricants, etc. because they are very drying -use either olive oil or vegetable oil, use Dove soap; I thought Ivory Soap would be good but she said that was very drying. I asked her about the Oxylate diet because I read that certain foods and drink can cause problems, but she said not to follow it. (Actually most of the food choices that were supposed to be high in oxalate were items I rarely ate anyways). She first put me on 25 mg of Elavil which I was supposed to use for 6 weeks and then I had to come back to see her. Initially the Elavil made me tired, so I started taking it an hour before I went to bed. Well, it didn't help, so she bumped me up to 50mg and so on. Once she had me up to 175 mg, which is supposedly the most you can take, and I was still hurting, she added the 150 mg of Lyrica. After being on Elavil for awhile, your body starts to tolerate it better. I don't know how long you've been taking it, but I would try taking it at night before bed and see if that helps. Oh, the one thing I did notice once she had me up to 150 mg of Elavil was that I had trouble going to the bathroom (urinating). I would literally be in there for what seemed like forever and I went on the internet and that was one of the side effects. I called her office to speak with her and she told me that since I was tolerating it pretty well to take one pill in the morning, one at lunch and the rest before bed -that helped. You could ask your doctor about switching from Elavil to Lyrica to see if that works for you. I think it's the reason why I feel better, but I still continue taking the elavil as well -just in case. Frank -I'm so sorry to hear that your wife was diagnosed with breast cancer. I will pray for her as well as your family. The dr I was seeing prior to switching had given me a small tube of Estrace cream to apply to the 6:00 region at bedtime -he said it would thicken up the area so it could withstand the penetration - it didn't. Well the dr I go to now told me to throw away the Estrace cream because it can cause heart attacks, strokes, breast cancer and she didn't believe that it would thicken up the area, which I had figured that part out already. It's still very frustrating though because no matter how slow/gentle we are, it still tears. The sad part was when I went in to have the surgery, that wasn't even an area that bothered me. My dr is aggravated about the surgery because she said they even removed my glands which help to produce lubrication. Since having the surgery which was back in 05, I since read that it helps people who have vestibulitis, not vulvodynia -which I have the vulvodynia. I think it's wonderful that you have been contributing to this guestbook for such a long time. What a wonderful, compassionate husband you are! I think that's great! One other thing that happened to me since having this problem -I was diagnosed with rheumatoid arthritis about 1 1/2 years after feeling the pain. They say that RA is hereditary (which nobody on either side of my family has had) or it can be caused from stress. I am sure that is the reason why I now have RA, so please everybody, try not to worry yourself too much. I know that it can be hard not to worry, but just knowing that there are dr's who are now starting to show an interest into vulvar pain and that there are different types of medication to try AND that you're not alone. I think that was the real reason I developed RA -at first I had no clue what I had and dr's seemed stumped as well. I was positive nobody else had anything like me, so I stressed constantly. So, please, please, don't do that.
CommentHi Cheryl - What a wonderful person you are. I was just checking the website just to see if there was the slightest chance that you might have seen my Email. I am already praying that this doctor might be my answer. About eighteen years ago (yes that long) my problem started. I had a vaginal infection and my OBGyne prescribed antibiotics. He kept bringing me back. He had his own microscope and would do the test right there and everytime he said the infection was there and prescribed more and stronger antibiotics. I developed the burning during this time. He did every STD test even for AIDS. Of course every test came back negative. I finally left him and saw another doctor. He asked me if I had trouble sleeping. I told him that I was always a poor sleeper and he prescribed .25 mg of xanax to take 3 x daily. Believe it or not it kept the burning under control. For quite a few years it helped me live a normal life. Of course the downside to this is that xanax is additive and as time went by my system required more. My doctor increased my dosage to .50 mg and finally to 1 mg 3 x daily. The real problem was as the dosage was increased my pain was now getting worse. I am addicted to the xanax but refuse to increase it further. A few years ago I came across Dr. Glazer's book and went to another doctor and asked her for a prescription for Elavil. I could take that with the xanax. She put me on 50 mg which didn't help much. She increased it to 100 mg. The Elavil did wonders for my sleep and I felt if I got a good night's sleep I didn't mind suffering during the day. The xanax helped me out there. I am now at the point where I don't sleep very well and the pain is chronic. In the midst of all of this six years ago I was diagnosed with malignant melanoma. That was a tough year but thank God I am around to suffer some more. I hope this will be a new beginning for me. Thank you so much again Cheryl.. If you would like to Email me at home I would love it but if you would not feel comfortable with it that is fine too. I forgot to mention that I am now seeing a neurologist who is running MRI's and other tests to see if it is a nerve problem. She has also taken me off the Elavil and is putting me on Neurontin.
CommentHello everyone, I have been reading this site for a few days but I dont see anyone with lichens scelorsus. Has anyone been told they have this condition. Thanks Marge
CommentHello everyone, I have been reading this site for a few days but I dont see anyone with lichens scelorsus. Has anyone been told they have this condition. Thanks Marge
CommentMarge, there are a few of us who have Lichen Sclerosis and there's a Lichen Sclerosis Yahoo board that's very active. Were you prescribed Clobetasol ointment? That's generally what Drs. prescribe for it, and some women also use estrogen applied topically and/or testosterone ointment. My L.S. is in remission, but I have vulvar vestibulitis to deal with. Hope you find the right treatment. Sue
CommentSue, Thank you for your response. I looked at the tube of medication and yes, the Clobetasol is what the dr. gave me along with estrace. He said that the success fo the treatment depends on each patient. He told me to try not to be too anxious, and I am to see him in a month for a follow up although he warned me it will probably take longer. Right now I cant even wear underwear. I hope to hear from you again. You made me feel like I was not alone. Marge
CommentSue, Thank you for your response. I looked at the tube of medication and yes, the Clobetasol is what the dr. gave me along with estrace. He said that the success fo the treatment depends on each patient. He told me to try not to be too anxious, and I am to see him in a month for a follow up although he warned me it will probably take longer. Right now I cant even wear underwear. I hope to hear from you again. You made me feel like I was not alone. Marge
CommentHi Marge: You're definitely not alone. Feel free to email me if you'd like to talk. sdsue123@san.rr.com
CommentHi Marge: You're definitely not alone. Feel free to email me if you'd like to talk. sdsue123@san.rr.com
CommentHello Sue, That would be a great idea but at this time I share my computer with another family member so e mailing will be a problem right now. But until that get's taken care of, can you tell me what the clobetasol and estrace help to do to the skin. My dr. tried explaining it to me but I guess I was too upset to absorb it all and my dr. is on vacation right now. Marge
CommentHi Marge: Clobetasol is used to relieve the burning, itching, swelling, and make the white patches get smaller and/or disappear. Topical Estrace cream thickens the vulvar skin. Use only a pea sized amount of each when you apply them. After a month or 2, you taper down on the Clob. I only use it once a week now, but I apply a dab of Estrace cream 2X a day. Everybody's different, so go by what your Dr. told you to do. Hope this helps. Sue
CommentTo Sue, YES, now I remember exactly what he said and you helped me to make sense of it all. I am to use the Clobetasol 2x a day and the Estrace 2x a week and then see him in a month. How long were you on the Clobetasol before the burning stopped and you tapered off? I hope the estrace doesnt make me spot. I still have all my inards. Thanks so much Marge
CommentHi Cheryl - Just wanted you to know that I saw Dr. Sangeeta Senapati in Skokie near Chicago today and was everything you said she was. When her nurse Marie came in and introduced hersef to me as Marie I said "I know your name". She looked at me with a very surprised look and said "how do you know me". I just said from a website on the internet. She was even more surprised and said "why would I be on the internet". I told her about Dr. Glazer's website and how a lady that had seen Dr. Senapati had wonderful things to say about the doctor and her nurse "Marie". We both laughed so hard and said "you mean I am mentioned in the internet. I can't wait to go home tonight and look up that website". The doctor said it was a good idea that I am having tests done by a neurologist but she feels after checking me out that it was a muscle problem and wants me to do pelvic floor therapy. I will certainly give it a try and also agreed with the neurologist for changing the amitriptyline to neurontin. If that doesn't work we will try a different one. If we wait long enough we might even see ads on TV for a sure cure for vulvur pain. After all they have viagara and many more ads for men. Anyway Marie and I had a great laugh thanks to you. I think I was the first person that told them that I was referred to them via the internet. Thanks for your info. and I will post again when I am on the therapy for a few weeks and praying for a miracle. God Bless.
CommentHi Monica -- believe it or not I was there yesterday too!!! Just for a regular yearly check up and Marie mentioned something to me about the referral and I told her that it probably was me -- but because of hippa the conversation only goes so far and we moved on. Glad you liked them -- they were life savers for me. I did not suffer as long as some on this website -- it took me approximately 4 months to get the help I needed. I think it started as an allergic reaction and then steam rolled into burning and pain. My gyne thought I was crazy -- I saw a nurse practicioner who was crazy -- and then went to Dr. Noone at Lutheran General who validated that I had vulvadynia -- tried to help me but after two weeks sent me to see Dr. Tu and Senapati -- the rest was a miracle. I was so depressed, anxious and sore -- I knew what was wrong and knew what needed to be done and I had finally found the right place. Now I am feeling 100% most days and she told me I could even ride my bike -- but trust me I will be careful. I'm glad I could help you -- I hope that you find relief -- my main goal with keeping up with this website was just to be able to help someone -- because this can really rock your world. So good luck Monica -- keep me posted and I hope you feel some relief soon and some piece of mind.
CommentHi Monica -- believe it or not I was there yesterday too!!! Just for a regular yearly check up and Marie mentioned something to me about the referral and I told her that it probably was me -- but because of hippa the conversation only goes so far and we moved on. Glad you liked them -- they were life savers for me. I did not suffer as long as some on this website -- it took me approximately 4 months to get the help I needed. I think it started as an allergic reaction and then steam rolled into burning and pain. My gyne thought I was crazy -- I saw a nurse practicioner who was crazy -- and then went to Dr. Noone at Lutheran General who validated that I had vulvadynia -- tried to help me but after two weeks sent me to see Dr. Tu and Senapati -- the rest was a miracle. I was so depressed, anxious and sore -- I knew what was wrong and knew what needed to be done and I had finally found the right place. Now I am feeling 100% most days and she told me I could even ride my bike -- but trust me I will be careful. I'm glad I could help you -- I hope that you find relief -- my main goal with keeping up with this website was just to be able to help someone -- because this can really rock your world. So good luck Monica -- keep me posted and I hope you feel some relief soon and some piece of mind.
CommentTo SUE, I have been reading a lot of the postings on this site and it really scares me. Vulvodynia seems to be a lot of different things to different people. I posted a message to you the other day and haven't heard back from you. I will wait till you read it and wait for your response. I also found a few other sites like you said but I need to show my e mail and I am not confortable with that because other family member s can get access to all the emils. Thanks for your help if I dont' hear from you again Marge
CommentTO MARGE, SORRY NO ONE HAS GOTTEN BACK TO YOU ON YOUR QUESTIONS. THAT HAS HAPPENED TO ME ALSO. I THINK I HAVE THE SAME CONDITION AS YOU DO. NONE
CommentHi Everyone, I have had vulodynia sine Nov of 2008. I had a severe e-coli infection and have been having severe burning sensations and raw skin. So much so that I have been out of work since. It has changed my life. I am taking 600mgs of neurontin 3x a day. I am taking 25mg of nortryptoline and oxycodone. I take ambain to sleep at night. I feel that the week before my period it flares up so bad and burns so bad that I resort to the pain meds. I have tried every herbal product. Citracal..etc..D-Mannose did help my UTI flare ups. I live on LI in NY and there is not one specialist here on the Island. It is absolutely unacceptable that gyn's are not able to treat this horrific affliction. If anyone knows of a LI Dr please let me know. I am unable to travel to NYC. Thanks
CommentHi Everyone, I have had vulodynia sine Nov of 2008. I had a severe e-coli infection and have been having severe burning sensations and raw skin. So much so that I have been out of work since. It has changed my life. I am taking 600mgs of neurontin 3x a day. I am taking 25mg of nortryptoline and oxycodone. I take ambain to sleep at night. I feel that the week before my period it flares up so bad and burns so bad that I resort to the pain meds. I have tried every herbal product. Citracal..etc..D-Mannose did help my UTI flare ups. I live on LI in NY and there is not one specialist here on the Island. It is absolutely unacceptable that gyn's are not able to treat this horrific affliction. If anyone knows of a LI Dr please let me know. I am unable to travel to NYC. Thanks
CommentHi Everyone, I have had vulodynia sine Nov of 2008. I had a severe e-coli infection and have been having severe burning sensations and raw skin. So much so that I have been out of work since. It has changed my life. I am taking 600mgs of neurontin 3x a day. I am taking 25mg of nortryptoline and oxycodone. I take ambain to sleep at night. I feel that the week before my period it flares up so bad and burns so bad that I resort to the pain meds. I have tried every herbal product. Citracal..etc..D-Mannose did help my UTI flare ups. I live on LI in NY and there is not one specialist here on the Island. It is absolutely unacceptable that gyn's are not able to treat this horrific affliction. If anyone knows of a LI Dr please let me know. I am unable to travel to NYC. Thanks
CommentHi Everyone, I have had vulodynia sine Nov of 2008. I had a severe e-coli infection and have been having severe burning sensations and raw skin. So much so that I have been out of work since. It has changed my life. I am taking 600mgs of neurontin 3x a day. I am taking 25mg of nortryptoline and oxycodone. I take ambain to sleep at night. I feel that the week before my period it flares up so bad and burns so bad that I resort to the pain meds. I have tried every herbal product. Citracal..etc..D-Mannose did help my UTI flare ups. I live on LI in NY and there is not one specialist here on the Island. It is absolutely unacceptable that gyn's are not able to treat this horrific affliction. If anyone knows of a LI Dr please let me know. I am unable to travel to NYC. Thanks
CommentTo Katie: Sorry you are suffer so badly. The experts are not much help either from what I've read here over the years. There is one expert in Hartford Ct my wife may see but we are not very hopeful. The normal gyns know the term "Vulvodynia" and will prescribe useless of harmful meds, never really getting to the cause(s). Have you tried a topical skin barrier product to lessen the burning during your period and possible reaction from discharge? Have you altered your diet to reduce oxalates?Please take some time and read past guestbooks one at a time to understand what other women have experienced and tried. Best of luck.
Commenthello, I have just found this web site. I hope someone can answer a question for me. I started with atrophic vaginits as my first diagnosis but I was seen by another obg and she said I had another condition. (not sure of its name, but I was red, swollen and had white patches) and now my doc. said the white patches are gone. I use a steroid and hormone creme 2x a week. But I still get irritation does anyone know what vestibulites is? I am reading some postings and I wonder if that is what I am dealing with now since the white patches are gone Thanks
CommentHi Casandra - Im fairly new posting on this wonderful website. I wish I discovered it years ago. I read in your post that Neurontin helps you. My neurologist who was recommended to me after seeing so many doctors took me off the Eleval and put me on Neurontin. It's only my second week and am taking 100 mg 3 x day. It doesn't seem to be doing much yet although she will be increasing it gradually. I am also starting pelvic floor PT. Could you please tell me what dosage you are on that helps you. Thank you and God Bless.
CommentTO AMZY. Did I read a post from you that you spotted when you used the hormones? Did you stop it and what did your gyn tell you? By the way how are feeling and keeping your vulvodynia under control? Thanks
CommentTO AMZY. Did I read a post from you that you spotted when you used the hormones? Did you stop it and what did your gyn tell you? By the way how are feeling and keeping your vulvodynia under control? Thanks
CommentTO AMZY. Did I read a post from you that you spotted when you used the hormones? Did you stop it and what did your gyn tell you? By the way how are feeling and keeping your vulvodynia under control? Thanks
CommentHi SUSAN, yes I did post that the hormone cream Premarin made me spot. I used it for 3 weeks and on the 4th week I was off the Premarin I spotted. Now I am using Estrace 2x a week 2x a day and clobetasol 2x a week. I have been about 95% better with the burning but yesterday and today I had some different type of irritation so I tried a lower grade cortisone. How about you? Did you get a specific diagnosis and what are you using now? AMZY
CommentThanks Amzy for the info. I was give hormone to rub on my skin. It is compounded. When I stopped using it, I spotted. So, I guess, I should not be alarmed by it. I am just having PT and taking low dose of cymbalta. It is still irritated but not that bad. What sort of irritation are you having now? This way, I know what to expect someday.
CommentSUSAN, First I just want to let you know when I spotted the obg did a endo. biopsy just to be sure it was the premarin. So you should tell your doctor about the spotting. The irritation I have right now is just a sensitive type of pinching. My deratologist saw me 3 weeks ago and said I was doing well. The white patches I had are gone for now but I will always need to stay on medication. But I still get irritation's and I will call him if it does't settle down. Is your skin red in the V zone or swollen. I am not sure what you are feeling? Also what type of compound are you using. I also used a compound months ago but I had some side effects. AMZY
CommentTO ALL ON THIS SITE; I have been viewing this site for over a year. I have found some very helpful information and guidence from many members, to whom I thank with all my heart. I have been in remission now for over 3 months after trying all types of medication and different doctors. That is not to say that I still don"t have irritation and flare ups. I do,but nothing like months past. I have met a lot of people, some still stay in touch with me and some decided not to. I am blessed and I just want all of you to keep trying until you find the right path. Amzy
CommentJust wanted to give everyone an update -- I have been feeling so much better these days. Three and a half weeks ago, I started taking 400 mg of Sporanox (divided into 2 doses a.m. and p.m.). The week before my period, I take Lamisil 250 mg daily for a week. I am hoping to stay on this regimen for six months. I have also been using boric acid suppositories vaginally, one in the a.m. and one before bed, for the past three weeks. I was so irritated when I first started using these probably because the yeast weren't very happy, but I stuck to it, and when I hit day 12, it was like a miracle happened and the pain subsided. I learned the hard way though to wear something to protect my clothes. Out of nowhere, I would start gushing clear vaginal discharge, soaking through my pants/shorts. It looked and felt like I peed myself. I started wearing Carefree unscented pantiliners, but these made me burn more. I either had to use a Kotex pad or take Cottonelle toilet paper wound around my hand to form into a pantiliner shape and stick it in my underwear, and for some reason it didn't bother me like the pantiliners did. I'm on week 14 of allergy shots, although I don't think these have quite kicked in because all my other allergy symptoms (drippy nose, watery eyes) to horses, cattle, maples trees and what have you are still in full force, and the doctor said it takes 6 months to a year to notice a difference. I do take a probiotic daily as well as a digestive enzyme, a multivitamin, omega 3 (helps with inflammation), and an iodine supplement (to boost my thyroid). Today, I just started Gynatren, which is a probiotic orally, as well as a capsule vaginally which includes boric acid as well as acidophilus in the vaginal capsule, which is used for 14 consecutive days. I thought it wouldn't hurt to add some good bacteria down there to keep the yeast away. After using the Gynatren, I will restart the boric acid suppositories vaginally on a maintenance schedule of 2 or 3 times a week. I also started Thymulus (although I was hoping the store would have Thymuplex instead). It gives a huge boost to the immune system and helps with autoimmune disorders (I'm allergic to myself -- allergic to my vaginal yeast, allergic to my thyroid). I flared 1 day, which was the day before my period, instead of the usual 3-5 days of flaring before my period, and the flare wasn't the usual burning, stinging, brillo pain, but more of an itch in the fold between my inner and outer labia on the right side which seemed like it was under the skin, and there was no pain whatsoever in the vestibule. Also, I've noticed that if I am constipated, my symptoms are worse, so I try to keep myself regular by taking herbal supplements when needed. I'm hoping I'm not jinxing myself by posting how great I've been feeling -- 13 days in a row so far, which is unheard of for me, but I am hoping it gives hope to someone that better days are possible. Take care.
CommentHi everyone- About 4 years agao, I think I experienced vulvodynia. I became pregnant in January of 2005 and the symptoms of burning, itching, soreness, and a feeling like something was going to fall out started in April of 2005. I ended up losing the baby, but the symptoms didn't stop. I went to numerous doctos, types of doctos, etc. But I never truly got a diagnosis. IN August of 2005< i started taking Elavil that my therapsit prescribed. By December of that year, I was symptom free. I have no idea if it ws the Elavil or not though. I stayed on the Elavil for another 6 months, and then went off it around June of 2006. I have been fine for the most part until now. I got pregnant again in May of 2007 (had a bautiful baby girl) and I remember I got some slight symptoms for a few weeks during the first tri-mester. That was it. SO now here we are. For the past week, I have had urinary frequency. Urine culture showed nothing. Starting yesterday, my frequency ws back to normal, but I have buring on the outer labia, like I would frequenetly get years ago. I haven't tried, but I'm pretty sure sex won't hurt. It never did last time. I guess my question is, does this sound like vulvodynia? My symptoms aren't nearly as bad this time. Any thoughts would be greatly appreciated.
CommentTo Leah: This site is not what it used to be several years ago, then there were plenty of women ready to share information and help newcommers. I would like to respond to your question and trust me after reading and posting here since Guestbook Thirteen, I have the answer to your question. Vulvodynia is often given as a diagnosis when symptoms do not respond to common treatments and tests do not reveal common ailments. Vulvodynia and it's many symptoms remain a mystery, no know cause or cure. The symptoms are either one or a combination of two or more of the following and I may miss one or two since there are many, burning, itching of part or all of the Vulva, thinning of the skin(tissue) of the labia, clitoris, Vulva, white patches of skin, extreme redness, papercut like tears of the clitoris, labia, or Vulva, pain affecting the Vulva with or without intercourse. frequent urinary and or yeast infections, burning discharge, stabbing pains. Doctors often prescribe antidepressants to "calm" the nerves of the Vulva, it is my belief they are trying to sedate the sufferer. Doctors will prescribe steroid and or hormone creams to repair the skin of the Vulva. There is little research to discover exactly what illness or illnesses are responsible for these various symptoms, so the only thing doctors can do is throw various medications at the symptoms and suggest surgery to remove the painful area if practical. In my wife's case hormone imbalance was not responsible for her thining skin and recurrent tear. Many tests, unnecessary medications and doctors later we still do not know why this started to happen and it is very frustrating and painful. Best of luck, and please share with others here so that they may learn fromyour experience. Thank you.
Commenthi my name is sheila and i was just diagnosed with vulvadynia and i was wondering if anyone suffering with this lives in my area ...shreveport/bossier city louisiana. i know no one with this chronic problem and i would love to be able to talk to someone else who suffers like i do..thanks and God bless
CommentCan anyone recommend a knowledgeable doctor for vulvadynia in the Baton Rouge, La area?
CommentHi Frank, Thanks for the response. I was on this site quite often a few years back and I remember you. No, this site is definitley not what it used to be. What happened??? Anyway, I went to see a urologist last Friday. I actually saw a PA and he was great. I told him my history about how bad it was 4 years ago. and how I went on Elavil and after a few months, my symptoms disappeared. I went off the Elavil and my symptoms stayed away for 3 years. Now they are back, but very mild. He told me that he doesn't think it is vulvodynia because typically that does not just go away and come back years later. He said it was probably just some type of pelvic pain. Isn't that the same thing??? Anyway, he put me on 10mg of Lexapro and 25mg of Imipramine and said they work quite well together, so I guess we'll see. He also made an appointment with me for a new female doctor in the practice who specializes in this and "loves this stuff", so that is promising. I think it is always good to have a doctor who loves this stuf!! It's just weird though. Every day, I have a differnet symptom. One day, it might be burning on the labia, the next it might be irritation around the vestibule. But it only lasts a few hours and the rest of the day, I'm, OK. And it's nowhere near as bad as last time. It's just very frustrating. I don't understand how so many women suffer from some type of this, yet no one can figure out what causes it.
CommentTo Leah: I'm glad your symptoms are not as bad as they were, still I appreciate your frustration. You are lucky to find a doctor who has enthusiasm and does not avoid patients with Vulvodynia. My wife and I have experienced the doctors who shun Vulvodynia because they can't fix it. I think women will continue to suffer these assorted symptoms, until this mystery illness is given more public attention and funding for research. I don't want my daughters or their's to suffer needlessly. Our society is still hung up on anatomical terminology especially when it comes to women, and it is holding up progress. There doesn't seem to be any problem discussing erectile dysfunction on tv, but you don't hear anything comparable about women. I wish you luck with this new doctor, hopefully she will hit upon something that is causing your problem(s). I'm sure you would welcome any answers or relief. We never did get any answers, and I think some of the attempts to resolve my wife's symptom of thinning tissue and tearing added to her developing Breast Cancer. It still seems surreal to write those words, she was such a strong person. Now that has taken residence in the back of our minds along with Vulvodynia.
CommentFrank, My prayers to go out to you and your wife. It seems like your wife has different issues than I do, but if I remember correctly, I think you live in Conecticut. I do as well and I am seeing Dr. Mary Maher at the Urology Center in New Haven. Perhaps she might be able to help your wife in some way.
CommentTo Leah: Thanks for the thoughts. The doctor you are seeing is the one who I beleive took over for dr. benson horowitz? My wife was going to see her and then the Cancer struck. Right now she is taking Tamoxifen to purposely reduce her Estrogen level. Her Breast Cancer is the kind that is Estrogen sensitive. Good news for us is that by lowering her Estrogen we greatly reduce the reoccurance if this disease. The down side of taking this medicine, well there are many, some serious and then there is the obvious. She has extreme dryness of the Vulva and now the thinning skin and tears are worse. I am at the point that I really don't want to be sexual with her because of the harm it will cause. Very difficult time for both of us because prior to this we were able to be intimate with care. I still have a strong libido and I'm in a constant state of frustration, upset and confusion trying to make sense of an impossible situation. We love eachother, and I'm hoping things will somehow work out. Please let us know how you make out with your appointment.
CommentTo Nellie, Could you please share with us your accupuncturist's name and contact in NYC? Thanks.
CommentHi Everybody, I am relatively new to this website and can certainly sympathise with all of you. I have been suffering for almost 18 years. My problem is twofold. I not only suffer from vulvodynia but because of the different medications I have been on I also suffer bigtime from constipation. I have been using a product called Cleanse More from the health store and although it is certainly a big help, it has irritated my colon. My colon is so irritated all the time I really don't know which problem is worse. I suffer from the top of my stomach all the way down to the vulvo. I am actually more concerned about my colon. I don't think the vulvodynia will actually kill me. The meds do help a little. It's a vicious circle. Reading all your stories I can't be the only one with this problem. I can barely walk a lot of the time. Any suggestions I would get from anyone would be kindly appreciated. God Bless!
CommentTo Monica: Cleanse More, may be too strong a treatment for your reoccuring constipation. I would suggest seeing a good gastroenteroligist, and if that is not possible switch to a stool softener and try to stop the harsh effects of the colon cleanser. Even natural products can be habit forming and have serious side effects. Best of luck.
CommentLinda, the accupuncturist in NYC is Dr. Sheila, no is 646-415-7879. She is expensive, but perhaps your insurance will cover it as she is an MD and a holistic accupuncturist who practiced under a great accupuncturist master. Good Luck.
CommentLinda, the accupuncturist in NYC is Dr. Sheila, no is 646-415-7879. She is expensive, but perhaps your insurance will cover it as she is an MD and a holistic accupuncturist who practiced under a great accupuncturist master. Good Luck.
CommentHi Sue, I wanted to let you know I am doing a little better with the clobetasol and estrace. I have been able to taper down on both already. I still have irritation but thanks for the info. How are you? Marge
CommentTo Nellie, Thank you for your reply. She is very expensive. I would like to ask you some more questions on acupuncture treatment. Do you mind dropping me an email to shelly20046@yahoo.com? Thanks. Linda
CommentTo Nellie, Thank you for your reply. She is very expensive. I would like to ask you some more questions on acupuncture treatment. Do you mind dropping me an email to shelly20046@yahoo.com? Thanks. Linda
CommentHello, does anyone use Estrace cream for vulvodynia. My doctor perscribed it 2x a week twice a day. I am concerned about the side effects. Can anyone help me with their experiences witht his cream? Sandy
CommentTo Sandy: Many gyns prescribe Estrace for thinning of the skin/ Vulva, unfortunately there are risks and side effects to consider. My wife was prescribed and used Estrace several times to repair thinning of the Vulva and a recurrent paper cut like tear at the six o'clock position. The Estrace did nothing to thicken the skin and prevent future tears. What these doctors refuse to do is test for low estrogen, which is what the Estrace would help supplement. MY wife did see an endocrinologist who said her estrogen levels were within acceptable range. Last year my wife was diagnosed with Breast Cancer, her's is the kind senstive to Estrogen. Please do not take Estrace unless you are deficient in estrogen, and if you do, please understand the risks. Vulvodynia is still a mystery illness with no known causes or cures. Best of luck.
CommentTo Frank B. Thank you for your response. Yes, I have been tested and my estrogen as well as all others is low. I am 58 years old. I use only a small amount on the outside of the vulva. I hope doing it that way will lessen the side effects. Sandy
CommentTo Sandy: You're welcome. I think you are the perfect patient for Estrace in terms of age and hormone levels. Nice to hear when a doctor properly prescribes this medication. Now that my wife is taking Tamoxifen which is designed to lower estrogen her symptoms are worse, but she is not a candidate for estrogen replacement. Best of luck and please post your results so that others may learn from your experience. Frank.
CommentTo Frank B. from Sandy: Frank, I read past postings and obviously your wife as well as yourself has suffered terribly. I hope for the best for her. I am sure she feels she is lucky to have a husand like you. I read some of your past comments about estrace. If you think it is the right medication for me why won't it help your wife? Sandy
CommentTo Sandy: When several doctors prescribed Estrace to resolve my wife's problem with thinning skin and the recurrent tear, their "hope" or reasoning was that thinning skin of the vulva was due to low estrogen. Their reasoning was wrong. Tests done by an endocrinologist proved her estrogen levels at the time were within normal range, any additional estrogen would be useless. Whatever caused her skin to become thin and tear was a mystery, and because her Breast Cancer is estrogen sensitive ( made worse by estrogen) it is possible the Estrace made worse an underlying disease. Presently, she is taking Tamoxifen, which is a medicine designed to purposely lower estrogen in her body, thereby reducing the occurance of any further estrogen sensitive Cancer. I agree that now with her estrogen levels made lower by the Tamoxifen, a drug like Estrace might releive some of her symptoms especially vaginal dryness, but it would counterproductive to the antiCancer drug she is taking. We would be trading a possible reduction of some symptoms of vulvodynia and menapause, for a very real increased risk of more Cancer. Our situation is untreatable, unresolvable because of this conflict. Your situation is very different in that tests have confirmed low estrogen, which will be treated by the Estrace. You have no history of estrogen related Cancer, so your risk should not be the same concern as someone such as my wife. I understand the Tamoxifen is making her symptoms of vulvodynia worse, but I am thankful she is alive and not at the same risk for Cancer. I wish more doctors would test for hormone levels before prescribing some of these meds. I hate to think of all the women suffering from the various symptoms of Vulvodynia being put at risk for life threatening illnesses. Take care.
CommentTo Frank B. I understand, (for the most part) what the difference is. I also know that vulvodynia is a broad term and there are many different reasons for it. I forgot to mention my doc. said I have some white patches also and I have a cortisone creme to use to help with that. It will be a long process for sure. Sandy
CommentHI, I haven't posted here in a while, but I wanted everyone to know that I suffered from vulvodynia for about 9 months until I found a wonderful physical therapist who cured me. I have no pain whatsoever. If anyone is interested in hearing a radio program she and I did together, you can go to www.sullivanphysicaltherapy.com, click on the left on "our clinic," and then scroll down to "News and Media" and then you will see a link to "Issues for your Tissues." There is a long musical intro for this show, but it's there. Feel free to email with any questions.
CommentHi Frank, sorry it has taken me so long to respond and thank you for your advise concerning my chronic constipation from all the medications I have been on over the last several years for my vulvodynia. I was honestly disappointed that you and just one other lovely lady responded. Maybe I am the only one with chronic constipation. Anyway Frank I tried the stool softeners for several days and they honestly did nothing for me. From being on the Cleanse More for so many years I am totally dependent on it. I will take your advice though and am trying to find a good gastroenteroligist in the Chicagoland area. If anyone out there knows one would you please pass their name and number on to me. It would be greatly appreciated. Frank, I have been following your story since I discovered this website a few months ago. I hope your wife is feeling better. You seem to have a lot to cope with and you still take the time to try to help others. Your wife may have a lot of problems but she also has the greatest blessing any wife could have - a wonderful and caring husband. I am of the belief that God does not give anyone more than they can handle. It makes us better and stronger people and that certainly comes through in what I read in your posts. I am also one of the lucky ones as I too have a wonderful husband who believe it or not is also named Frank. Hope things get better for you and your wife soon. God Bless! Monica
CommentI'd first like to say how happy I am to have found this site. I have been to several dr visits and completed numerous tests for infection and STD's which have all come out negative. I began with a urine infection that took 2 tries with antibiotics to go away. The pain still didnt go away so the dr. did culturing and found a vaginal bacterial infection. I took 2 doses of metro gel and still the burning did not go away. I had unprotected sex 4 months ago and have had all tests come up negative for STDs. I have a huge fear of herpes though that I cannot rid of. Can someone ease my mind? I had 2 blood tests done within 3 months and they were negative. Every day I'm checking to see if any bumps appear because at times I am so convinced that that is whats causing my pain. I read on another site that sometimes Vulvodynia is linked with herpes. Do they mean after an outbreak? If I can ease my mind of this I think I can work with making myself comfortable if its something totally unrealated. I am on high blood pressure meds and am really stressing about all of this.
CommentI'd first like to say how happy I am to have found this site. I have been to several dr visits and completed numerous tests for infection and STD's which have all come out negative. I began with a urine infection that took 2 tries with antibiotics to go away. The pain still didnt go away so the dr. did culturing and found a vaginal bacterial infection. I took 2 doses of metro gel and still the burning did not go away. I had unprotected sex 4 months ago and have had all tests come up negative for STDs. I have a huge fear of herpes though that I cannot rid of. Can someone ease my mind? I had 2 blood tests done within 3 months and they were negative. Every day I'm checking to see if any bumps appear because at times I am so convinced that that is whats causing my pain. I read on another site that sometimes Vulvodynia is linked with herpes. Do they mean after an outbreak? If I can ease my mind of this I think I can work with making myself comfortable if its something totally unrealated. I am on high blood pressure meds and am really stressing about all of this.
CommentI got cut off from my previous email. But I'd like to thank anyone that can offer some information/peace of mind on this. Thank you so much! I am praying that everything is ok. God bless you all and I hope everyone on this site can find comfort in this situation.
CommentTo Monica: Thanks for the kind words and my best to you and your "Frank". Reading and posting here has not been all about my wife for a long time. I want to offer support, and I want to encourage others to get better treatment. Unless there is meaningful research to identify and treat the mysteries of Vulvodynia, generations to come will suffer. I have two daughters and I am concerned about their health in general and more specifically their risk for Vulvodynia. Keep posting and take care.
CommentTo Leticia: They symptoms you describe fall under Vulvodynia. My wife started feeling buring and itching several years ago and we were both tested for various STD's, this is after more than twenty years of marriage. I know except for one girlfriend more than thirty years ago, I have never been sexually active with another woman. My wife said she was a virgin when we first had sex so there is no STD causing these symptoms. You have to believe you did not catch an STD including herpes, it is the mystery of Vulvodynia. During the first fifteen to almost twenty years of our marriage my wife was on The Pill, we had sex quite frequently and she had three pregnancies. Her body was constantly under a barage of things which sometimes caused a yeast infection and or bladder infection. It was only just nine or so years ago that the burning and itching became worse and the tissue at the base of her Vulva started to thin. Doctors test for STD's and we think STD's because science does not offer us any other explanation. Stress will make things worse, stop worrying and punishing yourself. You did nothing to cause this. Read past Guestbooks, try a low oxalate diet, drink plenty of water. Urinary tract infections are very difficult to get rid of, the bacteria clinges to the walls of the bladder and when the medicine is finished it starts all over again. There are things you can do to reduce reoccurance. Now is not a good time to be sexually active, but if you are do take precautions. Best of luck.
CommentFrank Thank you for your reply back. The reason I was so worried about herpes is because I had unprotected sex a month before all of this started. I have had all tests possible done though to rule it out for now. I've just heard that herpes can pop up after several uriniary/bacterial infections months or years later. This is really freaking me out and consuming me. I did have 2 blood tests done but I"m hoping I havent tested too early. Also, I went into the ER yesterday because I felt as if my bladder was going to explode and had lower back pian. The Dr found 2 uterian fibroids which he thinks is causing this. I know have to follow up with my Dr. next week on this. Can someone please give me som peace of mind on my fears and any info on the uterian fibroids. I'm having a really hard time with this and very depressed. Thank you
CommentTo FRANK B. from Sandy: Hi Frank-I have read a lot of your postings and you have a lot of info. I was wondering what you thought about steroid cremes. I am down to using it 2to3 x a week and estrace 1-2x a week. Do you think using the steroid 2x a week will make the skin of the V too thin? The dr. said he doesn't think it will. Thanks Sandy
CommentTo Sandy: If you've been reading my posts, then you know how I feel about steroid creams (Estrace). If your doctor can prove through blood tests and swabs taken from the Vulvu/Vagina that you are deficit in Estrogen, I would think it would be of help in thickening the skin. I have also read as you mentioned that if not used properly it can do the exact opposite of strengthening the skin and cause it to thin out. I'm disturbed at how often doctors will prescribe this medication to women who clearly will not benefit from it and put them at risk of other medical problems. My wife was still producing enough Estrogen when she was given Estrace and it not only did not help one bit with her thinning skin and recurrent tear at the six o'clock position, I believe it may have added to her Estrogen sensitive Breast Cancer. Please don't think I am trying to play doctor or scare you or any other lady who is suffering from sympotms of Vulvodynia. I know Estrace is and can be very useful when properly prescribed and used. I wish my wife's problem with thinning skin and tearing was due to low Estrogen and menapause. Chances are the Estrace would have given her some relief by nourishing her skin with exactly what it needed. Please don't be put off by my opinions and thoughts, ask questions of your doctor and after giving the Estrace a fair amount of time post your results so that others may benefit. Take care and best of luck. Frank B.
CommentHi "Just Me" June 13, 09 Just read your post and was very interested in what you had to say about Gynatren. I take probiotics most of the time but there are so many brands. I used to buy Healthy Trinity (I think that is the name) but it is very expensive. I would appreciate you giving me more info. on the boric acid as well as acidophilus vaginal capsule. Are both ingredients combined in one capsule or are they two separate ones. It's great if you E-mail me with the info. I seem to see boric acid mentioned a lot and right now I am willing to try anything. Thank you so much. Hope you check the website soon.
CommentTo FRANK B. from Sandy Thank you for your response. I am sorry your wife is going thru so much. I did get checked for hormones and mine were all low. I guess I misunderstood the Dr. because I thought he said that Estrace was a hormone creme and the clobetasol was the cortisone creame. I thought that the clobetasol is the creame that could thin the skin too much if you use it more than 2-3x a week. Sandy
CommentTo Sandy: You are right about the meds, this is one more reason I'm not a doctor and we should check eachother's information! It is the steroid creams that thin skin if overused. The following is off the Internet and is a warning on Estrace. Remember most meds have side effects. A long term clinical study of oral conjugated equine estrogens in postmenopausal women reported increased risks of cardiovascular events including, heart attack and stroke, as well as blood clots and increased risk of breast cancer at certain doses. Additionally, some other possible side effects of Estrace include headache, breast pain, irregular vaginal bleeding or spotting, stomach/abdominal cramps and bloating, nausea and vomiting, or hair loss.
CommentHello I currently wrote in the guest book. My update is that I went into the ER on Friday. Along with having the buring for 3 months now, I began feeling a full bladder and unable to urinate. I also have had terrible back pain. They found 2 uterian fybrodis. Although there was no urine infection detected they gave me CIPRO antibiotic to take for 7 days. I am following up with my OB today on the fibroids. Could this be causing my Vulvodynia? I dont know what else to do if this is not the cause of my pain.
CommentTo FRANK B. Thanks again for your response. I wish your wife good luck and good health. I will keep posting as I progress with the meds. I use only a dab of estrace 2x a week and only a dab of the cortison 2x a week. I hope this isnt enough to hurt me. At this time I am feeling some relief. Thanks For you help. Sandy
CommentHello, Can anyone explain the difference between vulvadynia, vestibulitis and lichen scelrosus? I am really confused. Also, can there be bleeding with any of these conditions. Anyone that can help me understand please post. Thanks Marie
CommentTo Marie" Vulvodynia is the broad term used to describe all the symptoms associated to pain and other problems of the Vulva and Vagina. A simple Intenet search can better describe in detail Vestibulitis which is redness, burning and other symptoms of the Vulva. Lichen's Sclerosis of the Vulva is also called the keyhole syndrome and it can lead to thinning of the skin, adhesions and shrinkage of the labia. The Internet has a lot of Women's health sites which can give you more detailed information.
CommentHi Leticia, When I read your posting on this website my heart went out to you. It was like reading my own experience 15 yrs. ago. I was diagnosed with a vaginal bacterial infection that just would not go away. My Obgyne treated me with several different and strong antibiotics, Everytime I went back to him he said the infection was still there. He even had me boiling my underwear to kill off the bacteria. Sometime during this period the awful burning started. I, like you, had myself convinced that I had some terrible desease. I had him test me for every desease I could think of and like you they all came back negative. That did not satisfy me I left that doctor and went to another and had all the tests done again and like the first tests they all came back negative. I was convinced that I had AIDS. I didn't believe the test results and the worst was that since the tests were wrong (in my minf) it would take six months before they could tell that I was HIV positive and several more years before I had AIDS. I was losing my mind and on the verge of a nervous breakdown. I was so stresses and that made the burning worse. I was put on medicine for high blood pressure and given tranquilizers which really helped me and although the burning did not go away they really lessened the pain. About 5 yrs. ago my daughter read an aticle about Dr. Glazier's book on vulvodynia and bought it for me. It was the greatest present I ever received. It was so great to find out I did not have any of those diseases and that I was not alone. I immediately made an appointment with a doctor that specilizes in women's health and asked for a prescription for Elavil. Although it is not a cure it does help a lot and I still take tranquilizers which also help with the pain. I am presently doing pelvic floor PT. I have had only a few sessions so far and am not sure if it will help. If it does not I am seriously considering surgery. But honestly my life is a lot better since I stopped believing I had some awful disease. I will pray that you can do the same. I have been down that road for too many years. Accept the fact that your tests came out negative. Please continue to let us know how you are doing. We are suffering from this incurable disease but at least we now have a name for it. Good Luck.
CommentHi Leticia, When I read your posting on this website my heart went out to you. It was like reading my own experience 15 yrs. ago. I was diagnosed with a vaginal bacterial infection that just would not go away. My Obgyne treated me with several different and strong antibiotics, Everytime I went back to him he said the infection was still there. He even had me boiling my underwear to kill off the bacteria. Sometime during this period the awful burning started. I, like you, had myself convinced that I had some terrible desease. I had him test me for every desease I could think of and like you they all came back negative. That did not satisfy me I left that doctor and went to another and had all the tests done again and like the first tests they all came back negative. I was convinced that I had AIDS. I didn't believe the test results and the worst was that since the tests were wrong (in my minf) it would take six months before they could tell that I was HIV positive and several more years before I had AIDS. I was losing my mind and on the verge of a nervous breakdown. I was so stresses and that made the burning worse. I was put on medicine for high blood pressure and given tranquilizers which really helped me and although the burning did not go away they really lessened the pain. About 5 yrs. ago my daughter read an aticle about Dr. Glazier's book on vulvodynia and bought it for me. It was the greatest present I ever received. It was so great to find out I did not have any of those diseases and that I was not alone. I immediately made an appointment with a doctor that specilizes in women's health and asked for a prescription for Elavil. Although it is not a cure it does help a lot and I still take tranquilizers which also help with the pain. I am presently doing pelvic floor PT. I have had only a few sessions so far and am not sure if it will help. If it does not I am seriously considering surgery. But honestly my life is a lot better since I stopped believing I had some awful disease. I will pray that you can do the same. I have been down that road for too many years. Accept the fact that your tests came out negative. Please continue to let us know how you are doing. We are suffering from this incurable disease but at least we now have a name for it. Good Luck.
CommentHello, I have suffered with VVS for 2.5 years. So far nothing has helped. Elavil lessens the pain but, of courese, cures nothing. I am moving to Dallas TX in a month. Can anyone suggest a doctor in that area? Houston is also fine. Thank you for any help you can provide and good luck to all. Maria
CommentCarolyn I about wanted to cry when I read what you wrote. I have been doing alot better but yes in the back of my mind I am doubting the test results until I complete my 6 month testing. I acutally have learned to accept that I am ok. But I have good an bad days. On the bad days I dwell on the unprotected sex I had. What made it worse is that it was infidelity on my part. My husband and I were having problems at the time, but now we are stronger than ever. I think I am 95% there to really knowing that I"m ok. It didnt help that I had a Dr. tell me that the 2 herpes blood tests I took may be negative now and change in the future. I saw a gynecologist after that that assured me it would have at least shown in the blood after 3 months. In the back of my mind, I still doubt things some times but other days I feel silly for even doubting it. The Dr. recently found Gardnella which is what I had before. Either it didnt go away or it came back but I am taking Metrodizonole 500 mg antibiotic right now. I've been feeling less burning but still getting bloating and the urge to urinate. It is not a bladder infection so now I'm being referred to a Urologist, not because the Dr. thinks I should be but I think more that he's tired of hearing me complain. It's been tough! Carolyn thank you so much for your support and convincing me that nothing major is wrong, because I have such bad days when I think the worst. I will keep in touch.
CommentHello, I wanted to share some good news for a change. I have been suffering with Vulvodynia for over 2 years. I have seen several doctors before I was diagnosed with Lichen Scelorsis. I have had some very helpful e mails from site members. I am very happy to report that at my visit today with my dermatologist, I was told that there is no diseased skin at this time. I am over 55years old and I was tested for hormone levels and found mine were all low. I used cobetasol for 3 months 2x a day and then one month 1 a day. Now I use it 2x a week and estrace 2x a week. I wanted to share this good news and to encourage everyone to keep asking questions on this site and know that you all can get relief. I know that it can come back again but at least I have a regiment that seems to help. Good Luck!!
Comment
CommentI just recently discovered this great website and check it every night and have found some great info. on this vulvodynia that we all seem to have in common. I am bothered by the last posting by Diane Davis that seems to have not been able to tell us about her problem. Is it possible to run out of space on the website. Some postings are shown two or even three times. I hope this can be corrected for Diane sake. Thank you.
CommentHi I posted a question sometime ago but I haven't had a reply yet. Does anyone know if bleeding is a symptom of Lichen Scelrosus? Thanks
CommentTo Marie: Who Gets Lichen Sclerosus? Lichen sclerosus appears in: Women (often after menopause) Men (uncommon) Children (rare). What Are the Symptoms? Early in the disease, small white spots appear on the skin. The spots are usually shiny and smooth. Later, the spots grow into bigger patches. The skin on the patches becomes thin and crinkled. Then the skin tears easily, and bright red or purple bruises are common. Sometimes, the skin becomes scarred. If the disease is a mild case, there may be no symptoms. Other symptoms are: Itching (very common) Discomfort or pain Bleeding Blisters. Hope this was useful.
CommentTo Frank, Thank you it was helpful. I have been searching the internet and could not find that bleeding is a symptom. Again, Thank you so much!!!!! Marie
CommentMARIE: Some gynecologist prescribe hormones for lichen sclorosis disease to help the skin heel, but the side effect is bleeding which is not good either, because hormones if taken regularly after a sign of bleeding is not a good sign and may lead to something serious in the wrong run. Are you taking or using hormones for this problem. If you are not, then , perhaps it is bleeding from the ulcers as Frank said.
CommentHi MARY, Thank you for the information. I was bleeding at first from Premarin creme and I had a biopsy and everything was fine. I went to a Dermatologist and he put me on Clobetasol and I had some very light pink spots which he did examine and tried to assure me it was just the outside tissue. I did not start to use the Estrace until a few months after that and THANK GOD I have had no bleeding. I just worry constantly about that happening again and my mind works overtime sometimes and I start to doubt the doctor's also. Do you suffer with the same thing? Thanks so much Marie
CommentI just want to share my experience with everyone, realizing that what I have may not be the cause of other women's pain, but hoping this may help someone, especially since I see the recent postings about Lichen Sclerosis. About a year ago, I was on this site doing research and looking for help because I thought I was going insane with what I was experiencing. My vulvodynia symptoms started suddently in 4/08, with pain, redness, swelling, and constant discomfort, and I had multiple cultures taken and multiple treatments, including antibiotics and yeast medications. I finally got "The V Book" by Dr. Elizabeth Stewart from Burlington, MA. She is a specialist in treating all the multiple causes of vulvodynia, and has a wonderful team of nurse practitioners in her office at Harvard Vanguard. (If you haven't read this book, I highly recommend it.) Fortunately I live in Mass and I called their office in the fall, and was able to get an appointment with a nurse practitioner within two months. (They now handle new patients in a group setting since they have so many new vulvodynia patients, although you get a private exam of course.) I was diagnosed with Lichenoid Vulvitis, which is a catchall phrase for having either Lichen Sclerosis or Lichen Planus. Lichen Planus is an auto-immune disease of mucous membrane tissue. Both diseases are officially diagnosed by skin biopsy, but since their office is so adept now at identifying the physical characterics just by an exam, (the labia start to shrink, the tissue around the vaginal opening develops "deep" areas, there might be "white" areas where it seems that the "pink" color of the skin is going away)and since both diseases are treated the same way, they didn't have to do a biopsy and went right to the next step of treatment. I have to use a topical steroid ointment (clobetasol) (they recommend an ointment over a cream because creams can be irritating on their own due to their alcohol content). It started with a daily application for 1-2 weeks, then 3 times per week for a month, then was reduced to twice a week. I started treatment in January, and it took some time to kick in, but I'm happy to say that I'm about 95% better. I still have some discomfort the day after intercourse, but my day-to-day existence is just about normal now, which I was getting afraid was never going to be the case again. So in my case, it turned out to be a disease of the vulvar tissue as opposed to anything internal. This is a chronic condition and I'll probably have to use the clobetasol for life, but it's a small price to pay. I'm able to see the condition now as a nuisance rather than a life altering crisis. I hope this might help someone. Again, this may not be the case with you, but it is worth asking your doctor about. If you have any access in your area to specialists in vulvar pain, even if you have to travel a little, I would recommend it! The regular ob/gyns just don't know enough. P.S. I think Frank who posts on this site is a very special man and his wife is truly blessed.
CommentP.S. ABC's 20/20 is going to air a segment on sexual pain and vulvodynia on August 7 at 10 pm ET. Christine Veasley of the National Vulvodynia Association (NVA.org) is going to be interviewed.
CommentHi everyone! I've been reading the posts on this website for a while but never posted because I had nothing helpful so say other than venting about my problem.. but now I'm finally starting to get better so I decided to share my story.. I'm 19 years old and have been diagnosed with vulvodynia/vestibulitis about a year ago.. at the beginning i just could use tampons and sex was painful sometimes but it was still ok, then it suddenly got extremelly painful so a decided to go see a doctor.. now sex has been pretty much impossible for a few months.. at the beginning i would still try but then i realized it just made it worse so i gave up.. anyway, the first doctor didn't know much about it, so she just gave me an A+D ointment to protect but it wouldn't treat anything.. then I found another doctor who actually knew more about this and she prescribed me a topical steroid cream... it helped for a while, but stopped making any difference after a couple weeks.. then she gave me another cream (i dont remember the name) but i only tried it once and it hurt reaaaaaaally bad so i never used it again... then i tried nystatin (something like that) for 3 weeks and it only made the symptoms muuuuch worse.. before that it would only hurt when touched or sometimes randomly, but during these 3 weeks i was in constant pain so i stopped using that too.. then my doctor wanted to try injections and then surgery.. i think i'm waaaaay too young for this type of surgery and felt like i had not tried everything yet.. so after a lot of research i finally found a specialist. I'm in Florida but i couldn't find a specialist here so I went to NY to see dr. Ledger. He is really good, very gentle and seems to know what hes doing.. that was last week and the next day of the visit i already started using Estrace and Flexeril (a muscle relaxer) and it's getting so much better.. this is the first time i'm actually hopeful.. it has only been a week so obviously i'm not healed but it has improved a lot and now i truly believe i will be healed some day!
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CommentCami, that's great news. I'm happy for you. I use Estrace cream also and take Flexeril before bed and sometimes once during the day. I was curious what dose of Flexeril you take, how often, etc. Thanks.
CommentHi Frank, I just recently received Dr. Glazer's book as a birthday present from my daughter. I have suffered from vulvar pain for too many years. I have been examined by several different doctors and tested for every disease possible which all came out negative. They did not tell me that it was all in my head but I knew that is what they were thinking. It was wonderful to read the book and discover my problem actually was real and even had a name. I never heard the word vulvodynia from any doctor. I have learned so much since I discovered this website and actually have an appointment with a doctor who specializes in vulvar pain. I am also ask her to recommend to a pelvic floor PT. As I read all the postings I can't help but wonder if you are a doctor. If you are not you missed your calling in life. You have so much compassion not only for your wife but you make time to help the rest us who suffer from vulvar pain. Your wife and daughters must be very proud of you. Keep up the good work.
CommentHi Frank, I just recently received Dr. Glazer's book as a birthday present from my daughter. I have suffered from vulvar pain for too many years. I have been examined by several different doctors and tested for every disease possible which all came out negative. They did not tell me that it was all in my head but I knew that is what they were thinking. It was wonderful to read the book and discover my problem actually was real and even had a name. I never heard the word vulvodynia from any doctor. I have learned so much since I discovered this website and actually have an appointment with a doctor who specializes in vulvar pain. I am also ask her to recommend to a pelvic floor PT. As I read all the postings I can't help but wonder if you are a doctor. If you are not you missed your calling in life. You have so much compassion not only for your wife but you make time to help the rest us who suffer from vulvar pain. Your wife and daughters must be very proud of you. Keep up the good work.
CommentTo Carolyn: Thanks for the vote of confidence and kind words. I wish I had the good health to have been a doctor, but unfortunately it was not meant to be. I'm lucky to be alive given childhood health problems, and I'm thankful for the love of my wife and our children. I can't stand mysteries and Vulvodynia is a big mystery. Wrong or no diagnosis (it's in your head), unnecessary medications and procedures, very upsetting. Lile I've said in many posts, I'm here to learn, share and maybe be of comfort. I do my best to check my information but I have been wrong on some things so always double check anything you read here regarding medications, treatments or other medical procedures. My wife is past being concerned about problems associated with Vulvodynia. Her bout with Breast Cancer has changed her mind and body, her needs, worries and concerns. I'm sure she appreciates me but at the same time we tend to find fault with the loves we love anyway. If I showed no interest in her health and Vulvodynia, I would be seen as unsupportive. Because I read and post here I am sometimes thought of as preoccupied or prying where I don't belong. I can't seem to please my wife all the time and certainly not everyone else, I just want to do what I feel is right. I may not be spearheading some campaign for research, but I'm here, concerned about the women in physical and emotional pain. I'm here hoping my daughters and other young women won't have to suffer because nothing was done now. I'm a passionate, sexual man, frustrated by this illness and saddened by how it has robbed my wife and I from the closeness and pleasure of the love we share but can't fully enjoy. Read past guestbooks, there have been some amazing women who posted but moved on. Question your doctors(s), be your best advocate and friend. Don't suffer in silence!
CommentHello all. I just found this sight and was really intrigued to see so many people posting about this topic. I was just diagnosed with vulvar vestibulitis yesterday and am now waiting to get an appointment with a specialist. I was curious if anyone out there who has or is experiencing the same issue could tell me what to expect. How long does it take to cure this? And does it ever completely go away? What treatments are most likely to work? I have been diagnosed with a yeast infection and UTI, both I was put on medication for. I also experience a great deal of pain during intercourse and afterwards as well. The itching/burning sensation goes away and comes back and is really just terrible. I have been given muscle relaxers and a numbing ointment to deal with the pain but nothing has worked so far. Any insight would be greatly appreciated.
CommentTo Kristen: Please don't be shocked or annoyed that a man is responding to your post. My wife has had some symptoms of Vulvodynia including burning, itching, yeast and UTI's for years and I have become very familiar with their causes and treatments. I have been reading and posting here for years and just in case there is not another response to your post, please consider some of what I am saying. Your age, general health, sexual frequency and several other factors contribute or affect the incidence of yeast overgrowth and UTI's. Reading past guestbooks will give you the benefit of what I have learned over the years and it may be of help. Ph balance is key to preventing yeast overgrowth, anything that alters the environment of the vagina can upset this delicate balance and lead to problems. Ruling out underlying illness such as diabetes, some of the things that can lead to a yeast infection would be the common tight, synthetic garments, wet bathing suit, douching and frequent intercourse. Semen can dilute and alter the ph balance and this is often referred to as the "honeymoon syndrome". My wife and I are an old married couple now but looking back to our early years together and frequent lovemaking I now understand what lead to her yeast infections. Some women are allergic to semen and this can lead to burning. The yeast is also an irritant, so intercourse in the presence of yeast further inflames the delicate tissue of the vagina. Please don't be offended by the following graphic language and reference, but the mouth contains hundreds of different bacterias. Oral sex can introduce bacteria from not only the mouth but surrounding areas of the woman's body! Most of the bacteria associaed with a UTI is e-coli, that is why it is often suggested to wipe from front to back after using the bathroom. Bacteria in the bladder is sometimes very difficult to erradicate with one course of antibiotic. The bacteria cling to the walls of the bladder and then flourish once the antibiotic is stopped. There are several things that might help prevent future UTI's, drink plenty of fluids (water), do not hold your urine, drink cranberry juice or take supplement containing it ( it works by making the walls of the bladder slippery so the bacteria are flushed away). Consider a supplement called D-Mannose, this simple sugar works much like cranberries and makes the walls of the bladder slippery so that bacteria cannot take root. Your partner has got to be onboard with helping you, he may need to take antibiotics to prevent reinfecting you. He might be smart to wash prior to having intercourse. Agressive oral hygene can help as well as cleaning under finger nails and washing the hands with an antibacterial soap. Your body is under attack and you must be your best health advocate or suffer more problems and pain. Some doctors suggest surgery as a last resort to reliee pain caused by damaged tissue. One last suggestion, if you use any lubricant during sex, make sure it is for that specific purpose! Cerrtain oils and things like vaseline are a breeding ground for bacteria. Best of luck and take care.
CommentTO CHRIS, I read your posting and was glad to see someone else seems to have exactly what I have. I was put on Clobetasol also in January but I had to use it 2x a day for months and now my doctor wants me to stop it and use a hormone creme. I am afraid to stop it completely because I am feeling good. I think the clobetasol, if used too much can thin the skin also. I am still using it but only 2x a day every 14 days. Marie
CommentHI I have been suffering from vulvodrnia for about a year now. I was recently diagnosed. It all started when I got pregnant with my second child. Mine also started with a yeast infection then was treated for bacteria infection, been on all sort of creams, oniment and steroid. Also had a bipsy that showed dermatitis. I renctlty went to a new GYN and was started on Elavil, I started on 10mg and now I am 50mg. I have bee non it 3 weeks and not seeing any improvememt from the burning pain. Is anyone else on it? How much did you take to see improvement in the pain? Also I am three month postpartum will it go away sense it was brought on by pregnancy. Best of luck to everyone. We really need ot find a cure for this awful disease. I want ot be able to enjoy kids they are 3 and 3 months and Half the time I can't play with them cause I am in so much pain.
CommentHI I have been suffering from vulvodrnia for about a year now. I was recently diagnosed. It all started when I got pregnant with my second child. Mine also started with a yeast infection then was treated for bacteria infection, been on all sort of creams, oniment and steroid. Also had a bipsy that showed dermatitis. I renctlty went to a new GYN and was started on Elavil, I started on 10mg and now I am 50mg. I have bee non it 3 weeks and not seeing any improvememt from the burning pain. Is anyone else on it? How much did you take to see improvement in the pain? Also I am three month postpartum will it go away sense it was brought on by pregnancy. Best of luck to everyone. We really need ot find a cure for this awful disease. I want ot be able to enjoy kids they are 3 and 3 months and Half the time I can't play with them cause I am in so much pain.
CommentHi Everybody, I am hoping that some of you watched Friday's ABC "Medical Mysteries" where one of the mysteries was on vulvar pain. A Dr. Tim Johnson mentioned the name of a doctor who seems to have great results with his patients. Unfortunately I did not get the dr's name. There are only about 10 doctors in the country that know how to treat our problem. I hope somebody out there saw the segment. I am counting on you Frank to have watched it. It was interesting but I had hoped they would have given the problem a little bit longer coverage. Would love to hear from anyone that watched it. Thanks.
CommentMonica, the Dr. on the show is Andrew Goldstein from Washington DC. I thought the segment was good, but too short. I only hope that there were Drs. watching the show so they'll get a clue as to what we're dealing with and know how to treat it.
CommentHi Sue, Thank you so much for responding to my posting about ABC's 20/20 segment on Friday night and with the doctor's name. Anyway I looked his name up on the internet and got a telephone No. for him. I was hoping to hear also from somebody that was maybe treated by him or does he even treat patients. Anyway I am going to call his office tomorrow and see where that leads me to. I am from the Chicagoland area but from the information I got on line it looks like they only have vulvovaginal disorder centers in Washington, D.C., New York City and Annapolis, Maryland. If I was sure those nerve endings could be blocked on a outpatient basis like it stated on T.V. I would fly there in the morning. After I make that call tomorrow I will post the information. I have suffered for many years and was so happy to discover this website recently. I feel there might be hope for all of us who suffer. Sue, I hope you are feeling good and if you have this problem I hope you don't mind me asking what helps you. Again I want to sincerely thank you for responding with the doctor's name and I will let you know what I find out tomorrow. Thanks again.
CommentI am really interested in what you find out after your phone call to this doctor's office. When I saw finally that someone was talking about this on 20/20 I cried. I have suffered for over 13 years, I finally just gave up trying to find a cure. This has motivated me to try again. I am tired of feeling inadequate and not enjoying that part of my life! I figured this Dr. is going to be over run with phone calls from all of us suffering in silence so I will refrain from contact them at this moment but please let us all know what they tell you. Good luck. Stephanie
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Commentdoes anyone know where the user "just me" is?? she talked about reacting to yeast spores, being allergic, long term antifungals, etc.
Commentdoes anyone know where the user "just me" is?? she talked about reacting to yeast spores, being allergic, long term antifungals, etc.
CommentHi Stacy, I am also waiting for a reply from "just me" for a few weeks now. I keep checking every night to see a posting from her. I hope she is O.K. Maybe she is not suffering as much as a lot of us. I hope that is the reason and I wish her the best of luck.
CommentHi Sue, just a brief follow up on ABC's 20/20 this past Friday night. I called the doctor's office in Washing D.C. today and just got an answering machine telling me to press 1 for a specific dr. and 2 for for another dr. etc. (hate talking to machines). I left my name and number with one of them and gave the reason I was calling. Hope to hear back maybe tomorrow or next day. I also called a place here in Illinois called the International Pelvic Pain Society and the girl said that they didn't have doctors there but could give me the name of specialists in the Chicagoland area. She gave me names but understandably could not recommend any one in particular. She did say that she was getting a lot of calls from women who watched the segment on ABC. I guess we must just play the waiting game. I will certainly post any info. I receive.
CommentTo Monica -- I live in Chicago and I have seen a Doctor in Skokie for vulvodynia and vestibulitis with wonderful results. I did not have any muscle involvement I know that these doctors see many patients with all kinds of problems related to Vulvodynia. Their names are Dr. Frank Tu and Dr. Sangeeta Senapati. They have recently moved their office near Old Orchard in Skokie. They are Gynes, do not practice OB and specialize in Pelvic Disorders. Please give them a call and give them a chance. Good Luck.
CommentTo Monica -- I live in Chicago and I have seen a Doctor in Skokie for vulvodynia and vestibulitis with wonderful results. I did not have any muscle involvement I know that these doctors see many patients with all kinds of problems related to Vulvodynia. Their names are Dr. Frank Tu and Dr. Sangeeta Senapati. They have recently moved their office near Old Orchard in Skokie. They are Gynes, do not practice OB and specialize in Pelvic Disorders. Please give them a call and give them a chance. Good Luck.
CommentTo Monica -- I live in Chicago and I have seen a Doctor in Skokie for vulvodynia and vestibulitis with wonderful results. I did not have any muscle involvement I know that these doctors see many patients with all kinds of problems related to Vulvodynia. Their names are Dr. Frank Tu and Dr. Sangeeta Senapati. They have recently moved their office near Old Orchard in Skokie. They are Gynes, do not practice OB and specialize in Pelvic Disorders. Please give them a call and give them a chance. Good Luck.
CommentHello, I come to this website quite often to read about other people who live with this condition. It makes you feel better because you realize you are not the only one. I would like to make this post because I found a little bit of relief and I am hoping that it might help someone. I got vulvodynia a few years ago when my yeast infection was treated with metronidazole gel. I woke with a burning pain that would not go away no matter what I did. After endless tests that pointed to nothing, weird looks from doctors and trying boric acid, coconut oil, long term antifungals, antibiotics, etc., I still had no relief. I did not want to try estrogen based or steroid based creams because I felt that they might put me into an even worse position. I read whatever I could on the internet about the condition and kind of started leaning towards possibly dermatitis theory of vulvodynia, I ended up coming up with a regiment that brought me relief. 1. cotton panties 2. most important-no soap in that area, not back, not front. What did women do a thousand years ago? I take a shower and then get a cup of drinking water or distilled water and wash with it. 3. I noticed that 1 oz of alcohol a day brings relief. I do not know if it has to do with blood vessel widening capacity of alcohol or what but for some reason it helps. Once I felt better I started doing it every other day or so. All of these things are inexpensive, so if someone wants to try and it helps that would be great.
CommentAfter suffering from volvodynia for over 40 years on and off, I am considering a vulvectomy. I would apprecite hearing from anyone who has had this surgery. Does it help? I hope so, because I am getting very tired or it running my life. I am normally a very happy energetic woman when I am not suffering. The latest suffering has been over 2 1/2 years, but I am not able to have sex for about 10 years because of pain. Please let me know your results. Thanks
CommentAfter suffering from volvodynia for over 40 years on and off, I am considering a vulvectomy. I would apprecite hearing from anyone who has had this surgery. Does it help? I hope so, because I am getting very tired or it running my life. I am normally a very happy energetic woman when I am not suffering. The latest suffering has been over 2 1/2 years, but I am not able to have sex for about 10 years because of pain. Please let me know your results. Thanks
CommentAfter suffering from volvodynia for over 40 years on and off, I am considering a vulvectomy. I would apprecite hearing from anyone who has had this surgery. Does it help? I hope so, because I am getting very tired or it running my life. I am normally a very happy energetic woman when I am not suffering. The latest suffering has been over 2 1/2 years, but I am not able to have sex for about 10 years because of pain. Please let me know your results. Thanks
CommentHi Cheryl, I am the person that you gave Dr. Sangeeta Senapati's name to and remember you were in her office the day after I saw her. She sent me to a pelvic floor PT. I have had about five sessions so far. I had to reschedule a few. We are doing remodelling in our house and my husband has to take me. The work is completed now and I will be back on track again. I am actually seeing the doctor on Friday. I am trying to keep up with the exercises at home and I must tell you they are starting to hur like hell. I hope that tells me that it is working. I watched ABC's 20/20 last week and have put a call into the center in Washington D.C. Left my name and no. on Monday but so far my call has not been returned. They are probably swamped with calls or like most things on T.V. they are too good to be true. After all the years I have suffered I guess I am ready to jump at anything that I think might be a cure. I am definitely going to continue to see Dr. Senapati. Hope everything is going well with you. God Bless...
CommentHi, This is for Marie, who responded to my post last week. The doctor's office that I go to did say that there are concerns out there that Clobetasol causes thinning of the tissue, but they said this isn't as much of a concern with mucous membrane tissue because it regenerates itself so quickly. (Think of how the lining of your mouth heals faster than regular skin.) Glad to hear from someone with a similar treatment experience and I hope you have continued comfort! Chris
CommentmdTo Monica: Hi Monica. Sorry I didn't respond right away. We've been having problems with the computer. Did you hear back from the Drs. office yet? I can imagine how many women called his office after watching 20/20. I was diagnosed with Lichen Sclerosis many years ago and the only treatment then was Testosterone ointment. I used that for many years until I saw I specialist in San Diego who told me either I never had L.S. or it was in remission. It must be in remission b/c I had a biopsy and I "did" have L.S. I know have Vulvar Vestibulitis and use Estrace cream topically, emu oil or vitamin e oil, and Clobetasol ointment once weekly to keep the L.S. at bay. I still suffer sometimes too. My biggest problem is in finding a Dr. out here that I can stomach. There are a slew of Gynos' near me and not one of them will even see a Vulvodynia patient. It pisses me off.
CommentwHi Monica: Sorry I didn't get back to you righ away. We've been having computer problems. Did you hear back from the Drs. office yet? I hope so. I can only imagine how many women called him after watching 20/20. I still suffer sometimes, especially when I ride the stationary bike. I know better, but stupidly do it anyway. Many years ago, I was diagnosed with Lichen Sclerosis and the only treatment then was Testosterone ointment. I used that for many years until I was referred to the vulvar pain specialist in San Diego and he told me to stop using the Testosterone ointment b/c I either never had L.S. or it was in remission now. He disgnosed me with Vulvar Vestibulitis. I think I also have generalized Vulvodynia b/c my pain isn't just from pressure. I apply Estrace cream topically everyday, use emu oil, icepacks and occasionally take an Aveeno bath.
CommentwHi Monica: Sorry I didn't get back to you righ away. We've been having computer problems. Did you hear back from the Drs. office yet? I hope so. I can only imagine how many women called him after watching 20/20. I still suffer sometimes, especially when I ride the stationary bike. I know better, but stupidly do it anyway. Many years ago, I was diagnosed with Lichen Sclerosis and the only treatment then was Testosterone ointment. I used that for many years until I was referred to the vulvar pain specialist in San Diego and he told me to stop using the Testosterone ointment b/c I either never had L.S. or it was in remission now. He disgnosed me with Vulvar Vestibulitis. I think I also have generalized Vulvodynia b/c my pain isn't just from pressure. I apply Estrace cream topically everyday, use emu oil, icepacks and occasionally take an Aveeno bath.
CommentwHi Monica: Sorry I didn't get back to you righ away. We've been having computer problems. Did you hear back from the Drs. office yet? I hope so. I can only imagine how many women called him after watching 20/20. I still suffer sometimes, especially when I ride the stationary bike. I know better, but stupidly do it anyway. Many years ago, I was diagnosed with Lichen Sclerosis and the only treatment then was Testosterone ointment. I used that for many years until I was referred to the vulvar pain specialist in San Diego and he told me to stop using the Testosterone ointment b/c I either never had L.S. or it was in remission now. He disgnosed me with Vulvar Vestibulitis. I think I also have generalized Vulvodynia b/c my pain isn't just from pressure. I apply Estrace cream topically everyday, use emu oil, icepacks and occasionally take an Aveeno bath.
CommentHi Jean: I'm sorry you're suffering too. My husband and I haven't had sex in a long time. Now that I want to try again, he has no libido. You've gone a long time without sex too. I was diagnosed with Lichen Sclerosis shortly after getting married, so our sex life has been less than stellar. I hope and pray you find a treatment to ease the pain.
CommentTo Sue: So nice to see this site active, I've been reading and posting for years and sometimes it gets very quiet making me think women are feeling hopeless. I'm glad there was tv coverage and renewed interest in finding answers. I would like to comment on male sexuality and libido, I hope no one is offended but maybe I can offer some insight. Most guys don't like to talk about their sexuality unless they are bragging and trust me I am not! During my twenty six years of marriage our sex life has gone from very active to very inactive due to pregnancies, vulvodynia and cancer treatment. I am a passionate man and I have given this subject a lot of thought, what drives my libido, how to respond, what to expect, I don't think I've left any stone unturned. I do talk to other guys about intimacy and relationships but I'll speak for myself and my experience regarding this issue. Being a lover, a capable sex partner for me, requires some regularity, frequency, encouragement and stimulation. Vulvodynia complicates this recipe for sexual intimacy or performance by introducing periods of inactivity mixed with the knowledge that instead of giving pleasure I am causing pain! My mind is a swirl of desire, guilt and confusion at times. I honestly don't know how to behave around my wife, or respond to my own feelings or hers and it is very upsetting. I'm sure those of you who are in relationships are aware of the complexity of the person you love. I just wanted to put out there how difficult it may be to reignite feelings of passion and sexual intimacy. Please encourage your mate to talk about their feelings, thoughts, fears. Communication doesn't always work for my wife and I, but it's all we have so we have to at least try. Good luck. Frank
CommentIf anybody has had a vulvectomy, could you please let me know the results? I am considering this after everything hasn't worked for years and years of on and off suffering. The most recent problems came back after the change of life. Thanks for any comments.
CommentHi I have been reading these guest book and figure it my turn to comtribute. I am 29yo and I have been suffering from vulvadynia for about year now, my main symptom is burning external and sometime internal no pain during intercourse jsut seems to burn a lot after. It started when i became pregnant with my daugher who is now 3 months old. I was just diagnosed about a month ago when I went to a new GYN. When I was pregnant my old gyn put me on diffican for like 3 weeks, and then 3 rounds of antibotices, tons of creams and onitment ( I could run my own pharmacy) they cultured me like 5 times they would all come back negative. Then they kinda gave up and said I need to see dememtolgist sense my pain was skin related. They gave me a steriod cream called Dexonide ( steriold cream) which cured me for a few months and then it would come back. So I am now with this new GYN who seems to know what her is doing he has compounded me Elival and has be taking Elival orally also. I have been on Elavl now I am up to 80mg now for a month and see little to no improvement. Did Elival work for anyone else? If so how long did it take to work? I am also thinking of tring pyhsical theropy has that work for anyone. If anyone whats to e-mail they can do so at laurajstonier@hotmail.com I would love to talk to someone with vuvladynia. thanks for reading and best of luck to everyone!
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CommentHi anyone had luck with elavil?
CommentTo Laura: I guess everyone is busy, but I check the site just in case someone's upset and wants to talk. I have read of many women getting relief from using Elavil. My wife was told that the beneficial effects would wear off after a couple years, they say it calms the nerve endings. My wife did not take it because she did not want to deal with the weight gain and also because she remembered how similar drugs affected her Mom when she was growing up. Her Mom suffered from manic depression. If you are going to try Elavil start with a low dose and gradually increase, this way you can monitor the effects. Please check past guestbooks for more information in the event you don't get a better response now. Best of luck.
CommentTo Laura -- just saw your post and thought I would put in my 2 cents. I have had vulvodynia for almost 2 years now -- but for the last 16months my symptoms are almost gone and even when I do flare they are definitely manageable. I was on Elavil (up to 40mg/day) for about 4 months last year -- I think it did more for my psyche than anything else -- I was a basket case and depressed and this helped with that tremendously. What I used initially was 5% Lidocaine on a cotton ball at the entrance to the vagina nightly for about a year and to tell you the truth -- it helped enormously. I started all the problems with an allergic reaction to Ivory soap -- x2 and then steam rolled into 20 gyne visits -- antibiotics, creams etc. Once I found myself with the right doctor I was able to get on track. Now I have the occasional flare up about every other month for about 3-4 days and seems to coincide with ovulation and the increase in secretions. I try not to panic and just ignore it and keep to my regimen of cotton underwear -- no soaps and staying calm -- thank God it always passes. So I hope this helps and good luck and sounds like you may be in the right hands. Its difficult to have a new baby and this problem -- so try to stay calm -- once you figure out triggers and what helps you will feel better.
CommentTo Laura -- just saw your post and thought I would put in my 2 cents. I have had vulvodynia for almost 2 years now -- but for the last 16months my symptoms are almost gone and even when I do flare they are definitely manageable. I was on Elavil (up to 40mg/day) for about 4 months last year -- I think it did more for my psyche than anything else -- I was a basket case and depressed and this helped with that tremendously. What I used initially was 5% Lidocaine on a cotton ball at the entrance to the vagina nightly for about a year and to tell you the truth -- it helped enormously. I started all the problems with an allergic reaction to Ivory soap -- x2 and then steam rolled into 20 gyne visits -- antibiotics, creams etc. Once I found myself with the right doctor I was able to get on track. Now I have the occasional flare up about every other month for about 3-4 days and seems to coincide with ovulation and the increase in secretions. I try not to panic and just ignore it and keep to my regimen of cotton underwear -- no soaps and staying calm -- thank God it always passes. So I hope this helps and good luck and sounds like you may be in the right hands. Its difficult to have a new baby and this problem -- so try to stay calm -- once you figure out triggers and what helps you will feel better.
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CommentThanks for the responses everyone its good to know I am not alone. Frank- I have been taking Elavil for a month I started at 10mg and they gradually went up to 80mg. I notice I am losing weight it seems to supress my appiette. But I know it affects everyone different. I plan to stay on it one more month and then if still notice no improvement when I see the GYN I will go off it. I had a few pain free day last week but the pain always seems ot come back to haunt me. Cheryl- Thanks for the suggestion for lidocane 5%, is the lidocane you use a onitment or a gel? I had the GYN call me in some this morning. I have Lidocane 2% gel already. He has also compounds me licocane and Elival in a onitment and cream to put on atopically. I notice all the stuff he has tried seems to irritate me more. It seem to be fine on the outer labia but once it works it way to the inner lips it seems to burn more. But maybe tring it at night will help. I am willing to try anything! Thanks everyone!
Commenthello, i suffer from vulvodynia. i am only 15 years old. me and my mom are having trouble finding someone who can help me in Florida. I am now scheduled for a biopsy of the vulva. (very scared) Has anyone had one before if so please email me and explain what will be done. Also i am really considering the surgery but i'm not sure if they will let me do it at this age. I'm having trouble finding other teenagers with VULVODYNIA/VESTIBULITS please if you have any information on DOCTORS who specialize in VULVODYNIA VESTIBUITLIS IN FLORIDA OR AROUND FLORIDA EMAIL ME AT cuteangel1029@yahoo.com
CommentTO CHRIS WHO RESPONDED BACK TO ME ON 8/13 . Thank you for sharing your information from your doctor about clobetasol tissue thinning. I still continue with it 2x a week, and only a dab and also a dab of estrace 2xs a week. I am also considerable better.Since we seem to have the same type of condition I would love to get future postings from you and maybe we can compare what each doctor has I do for further treatment. Thanks MARIE
CommentHi I have been on Elavil a month and half with no changes in my condition. I have been on so many creams and onitment and find they all irritate me more. I am going to try physical Therapy anyone tried this? Please E-mail me laurajstonier@hotmail.com
CommentI'm still here...just been so, so busy with life that I haven't been able to check in as often as I would like. Anyway, to Monica, I only used Gynatren (acidophilus/boric acid) for 5 days and not the full 14. The doctor said I have plenty of good bacteria, and I am scared to have too much as that can cause a whole new set of problems. I felt the pink "discharge/powder" I leaked from the Gynatren was actually irritating, so I am just using plain old boric acid suppositories but still get irritated while ovulating and right around my period, and I think the boric acid can be somewhat mildly irritating, but then again, it could be the yeast I'm feeling. I just read on modernherbalist.com that women do not use the boric acid suppositories effectively, meaning that it is important to use during menstruation when yeast organisms are most active and more susceptible to treatment. Treatment should be initiated by a two-week, mid-cyle "loading phase" (starting three weeks before your next period) using one suppository, twice daily, morning and bedtime. Once mestruation begins, use one suppository per night for the duration of the period and repeat for the following four to five periods (do not repeat the mid-cycle loading phase), so I am trying this, and we will see what happens. However, since I also have irritation on the outside, I took one of my prescription creams that is non-irritating to me (hydrocortisone 2.5%, lidocaine 2%, and nystatin 100KU ointment mixed in an emolient cream), which I had compounded at The Medicine Shoppe, and I squirt it in the palm of my hand and add a pinch of boric acid and mix it up well and then apply externally. This is only my second day, so we will see if it helps resolve my irritation mid-cycle and around my period. I have come a long way from where I started three years ago. Back then, I hurt so bad that the pain was debilitating, and there were days that I could barely function. I wanted to die because the pain was so bad (a 12 on a scale of 1 to 10); now, I would say it is just annoying and at its absolute worst is a 3 on a scale of 1 to 10, with most of the times it being a 2 or 2½. Three years ago, I was lucky if I had two "good" days a month. Now, I get 2 to 2½ weeks of "good" days where I don't even think about my vagina (no twinge of pain, no itching, no burning). I am still on heavy antifungals (Sporanox 400 mg/day), although I can't say they have healed me, but I am afraid to stop them, the yeast multiply, and then I will be right back where I started. The Ancobon antifungal did not help me at all. My yeast must be resistant to it. It cost over $12,000 a month, and when I went for my checkup after six months of use, I had 10 yeast spores per high power field. On Sporanox, I am down to 1 or 2 yeast spores per high power field. I am still getting my allergy shots. I am almost at the six-month point for allergy shots, and I really can't say I notice much difference. The doctor says that in some people it can take 12-24 months. Sigh. Since I am irritated during ovulation and around my period, the doctor tried me on continuous birth control pills to stop ovulation and to stop my periods. My ankles swelled like you wouldn't believe. I looked like a pregnant woman with toxemia. I had "pitting edema" and would press on my ankles, and it would just stay in for a long period of time. I took my daughters shopping, and 2 hours into our trip, my ankles looked like they belonged on an elephant. My sister calls them "cankles." I'm 37 (almost 38), 5'4", 130 lbs., so cankles just don't look right on a person of my age, height and weight. Needless to say, after two months of that, I stopped the birth control pills, and, honestly, I don't think they made much of a difference, if any, in the way I felt month to month. Plus, from what I've read, yeast and birth control pills just aren't a good mix anyway. I was thinking about trying an antihistamine to stop the histamine reaction I am having to the yeast spores. I tried Claritin D. What a nightmare. I must not be able to tolerate the "D" in the Claritin. I couldn't sleep at all, my insides felt like they were shaking, I felt like my throat was constricting, I literally felt like I was dying. The gynecologist/specialist said most people do not find OTC antihistamines helpful. However, I had the allergist right me a prescription for Clarinex (figured it would be a bit stronger than OTC meds), but I am scared to try it. Plus, I don't want to keep trying too many new things at once because then I won't know what's working and what's not, so just sticking with the cycles of boric acid use and cream for now along with Sporanox. Okay, sorry for the book, but that's the latest and greatest with me. I will try to check in more often, I promise. =D
CommentI am 52 years old and was diagnosed with general vulvodynia 20 years ago. Since then I have seen gynecologists, pain specialists, and a pelvic pain specialist. Still, I have nonstop pain around the clock. Nothing has helped me. I don't know what to do, but I am just so miserable.
CommentI am 52 years old and was diagnosed with general vulvodynia 20 years ago. Since then I have seen gynecologists, pain specialists, and a pelvic pain specialist. Still, I have nonstop pain around the clock. Nothing has helped me. I don't know what to do, but I am just so miserable.
CommentTo Susan: It has been awhile since I have been on the site. Have you been given a specific Diag? What medication have you tried? I got a lot of help from this site. Amzy
CommentTO ANYBODY INTERESTED IN ABC's 20/20 RECENTLY: I got a call back today from a Carolyn Potius in Dr. Goldstein's office. Said they were swamped with calls from people who saw the segment. She gave me some information. Dr. Goldstein does not accept Medicare or any health insurance. The first visit would be for 2 hours and would consist of consultation and any testing required e.g. blood tests and lab work. The cost would be $1,300. Subsequent visits would be $160. If you were a no show or did not call and reschedule a missed appointment at least 2 days in advance there would be a $250 charge to your credit card. Anybody who may be interested can call Carolyn at 302-998-9923 or their office manager Ruth Bradford at 301-325-2303. If I lived in Washington D.C. or one of their other 2 locations I would definitely love to see what Dr. Goldstein does differently. You can also check out their web site at CVVD.org. If anyone is able to to follow up on this please let us all know how you made out.
CommentHi Everyone -- have been reading these posts for a couple of years and was real excited to see that there was a segment on 20/20 but very disturbed to hear that this physician does not take any insurance -- can you submit to your insurance? Before anyone jumps the gun to see this doctor -- please make sure that your insurance will cover some. I have been a nurse for 25 years and am always uneasy about a doctor who will not take insurance. With todays economic crisis and so many people out of work -- I would hate to see someone who is desperate for help incur large medical bills and there is no guarantee. Just a word of advice to anyone interested. Good luck and check your facts first.
CommentHi Everyone: Thank you Cheryl for asking about Dr. Goldstein's policy of not dealing with insurance. I am sorry I should have mentioned that the patient pays up front and they in turn can submit it to their insurance. I would also highly recommend anyone who may be interested to please check out their web site CVVD.org. There is a list of "things you might want to know" and interestingly enough that very important piece of information is not one on the list. They don't mention the $1300 for the first visit. The person who called me said I could bring the report of any tests I had recently done with me but their web site says that they only use the results from their own lab because they do them differently. Also if I remember correctly from the 20/20 segment it stated that there are only 10 doctors in the country that are trained in this field but their web site narrows it down to just the 3 doctors that work at their three locations, Washington D.C., New York and Maryland. Thank you again Cheryl for bringing up a very important point.
CommentHi Everyone: Thank you Cheryl for asking about Dr. Goldstein's policy of not dealing with insurance. I am sorry I should have mentioned that the patient pays up front and they in turn can submit it to their insurance. I would also highly recommend anyone who may be interested to please check out their web site CVVD.org. There is a list of "things you might want to know" and interestingly enough that very important piece of information is not one on the list. They don't mention the $1300 for the first visit. The person who called me said I could bring the report of any tests I had recently done with me but their web site says that they only use the results from their own lab because they do them differently. Also if I remember correctly from the 20/20 segment it stated that there are only 10 doctors in the country that are trained in this field but their web site narrows it down to just the 3 doctors that work at their three locations, Washington D.C., New York and Maryland. Thank you again Cheryl for bringing up a very important point.
CommentHello everyone, I have had very severe problems for 2.5 years. I have seen some of the "supposedly" top doctors in the country. Goldstein (the 20/20 guy) has been one of them. If you search on web sites like Ratemydoc and others you will find several interesting reviews that patients have provided. I cannot comment on him. I am currently seeing a different doctor. Good luck to all.
CommentThank you, I am going to yet another doctor to confirm if this is what I have. Been having pain for 5 years and been to doctors all around the U.S. and am getting tired of unexplained pain that the docs think is all in my head! I tell my mom and my husband, this is no pain I would even wish upon my worst enemy!! Mine started after I was diagnosed with Genital Warts, then for the past 5 years, I have been getting treated to get rid of abnormal cells on my cervix, and if this is what I have, it explains ALOT! Can't wait to find out the truth FINALLY! Thank You
CommentThank you, I am going to yet another doctor to confirm if this is what I have. Been having pain for 5 years and been to doctors all around the U.S. and am getting tired of unexplained pain that the docs think is all in my head! I tell my mom and my husband, this is no pain I would even wish upon my worst enemy!! Mine started after I was diagnosed with Genital Warts, then for the past 5 years, I have been getting treated to get rid of abnormal cells on my cervix, and if this is what I have, it explains ALOT! Can't wait to find out the truth FINALLY! Thank You
CommentTO LOREDANA, I read your post and I tried to go on Ratemydoc.com but I am not having any luck. I am really interested in what is posted there. Anna
CommentTO LOREDANA, I read your post and I tried to go on Ratemydoc.com but I am not having any luck. I am really interested in what is posted there. Anna
CommentTry www.ratemds.com
CommentTO SUE FROM ANNA Thank you for the site. I was able to get on it but I could not find any info on that Dr. from 20/20 Andrew Goldstein ( I think). In reading some of the postings it sounds like he isn't what we think he is. I Have seen so many doctors and used so many creams I am sick to death of all the pain and irritation. Thank you for your response!!!!! ANNA
CommentTO SUE FROM ANNA Thank you for the site. I was able to get on it but I could not find any info on that Dr. from 20/20 Andrew Goldstein ( I think). In reading some of the postings it sounds like he isn't what we think he is. I Have seen so many doctors and used so many creams I am sick to death of all the pain and irritation. Thank you for your response!!!!! ANNA
CommentI have tried all kinds of treatments over the years (since 1988).but nothing has given me any pain relief at all. I can't remember everything I tried, but some are (in no particular order):: Percocet, Oxycontin, Oxycodone, Neurontin, Elavil (which I take for insomnia 125mg at night), Lydocaine cream, Diflucan, Estrace cream, biofeedback/physical therapy
CommentHi Everyone, I have been suffering for 18 yrs. with vulvar pain and have gone to so many doctors and been given every test, cream and medications out there. The tests all came negative and the only thing that helps is 100 mg of Elavil at night and I take 1 mg of xanax 3 x daily. The Elavil really helps with the sleep but I will not take it during the day. I need to be alert. The xanax helps during the day. I am really considering having a vulvectomy done. Has anyone had the surgery and has it helped. If they can change a man into a woman surely they could cut away our painful vulva parts and graft some new skin. I would love to hear some success stories. I am at my with end.
CommentHi Everyone. Its been a while since I wrote. I've been seeing several Dr.s and I've narrowed down that I may possibly have HPV. I'm scared. The Dr found some lesions that look like HPV warts but I havent tested, thats the next step. Can anyone relate and ease my mind? Is it true your immune system can kick it out eventually or will I live with this all my life? My burning has gotten better but I am still irritated all the time. Thanks to anyone that can help me out.
CommentHello, I'm looking for a vulvar specialist in the Baltimore area. Any help would be greatly appreciated. Thank you
CommentHello, I have suffered from VVS for many years and was seeing a specialist. I do not feel that he has helped me and has the worst bedside manner, so that does not help in this situation. I am looking for a specialist in the Baltimore/Maryland area. Any help would be greatly appreciated. Please email me directly. Thank you
CommentTO CHRIS who posted on 8/1/09. I read the V book as you suggested in your posting. I am using the same treatment as you with the clobetasol. As she states in her book I used it for 3 full months then tapered off to 2x a week and I use a hormone creme 2x also. I am over 60 years old. I wish I could travel to Mass. I certainly would. I live in New Jersey so I would not be able to do that. I just happened to do my own research and went to my derm with the info. and he helped me with the regiment. I think my biggest problem is accepting that this will really never go away and I will always have a little something going on. I would like to know how you are doing at this time. Thanks Anne PS I also purchased the book so I could refer back to it.
CommentTo Anne: I live in another state also but I did travel to Mass and I did see Stewart. I was also put on clobetasol. This was more than a year ago. Unfortunately, of all the treatments that those so called specialists have given me, it was the worst. I never quite recovered. I am glad it works for some people. However, be very careful, clobetasol is a very potent medication. Use just the amount they tell you and make sure you have a local doctor who can follow up. Best of luck!
CommentI posted to Chris yesterdat and another site member **** answered me. Hello to you. Can I ask did Dr. Stewart diag you with Lichens Planus or Scelrosus? I am sorry to hear nothing is helping. Maybe it is another condition. I would like to contact Dr Stewart but I can't seem to get an exact address. Also, I wanted to share with you that it took me a year to get to this point and I also use a hormone creme 2 a week. I am over 60. Please answer! ANNE
CommentThis is Stewart's phone number: (781) 221-2500. She is with Harvard Vanguard in Burlington, Mass. I was not diagnosed with Lichen. She thought I has just a very bad irritation. After more than a year, I am worse than I was at the time but they (meaning several of these big ticket specialists) can't figure out what it is (probably hormones, since I don't seem to have anything else). Good luck!
CommentHello again to **** I believe that my LS is from low hormones. I use Estrace 2x a week because I am afraid I will spot. Do you live in the Pennsyvania or New Jersey area. I whish we could e mail directly to each other. Anne
CommentTO **** FROM ANNE Thank you for the phone number of Dr. Stewart. I will probably give a call for information on someone in my area even though I am much better than last year. I am truly sorry you have not found any relief yet. As I stated before I don't think it will ever go away even for those who are not suffering right now. I want to thank you again for the phone number and I hope positive things for you!!! Anne
CommentFrom ANNE to ****I just wanted to let you know I did call that number you gave me for Dr. Stewart. It would be too far for me to travel and the Dr.'s that are recommended are way out of my area. I am a little bumbed out about it. The secretary was not really helpful, but, then again what could she really tell me.
CommentTO CHRIS WHO POSTED 8/1/09. Could you share your progress to this point with your vulvodynia. I am also following Dr. Stewarts V book and clobetasol. I would like to know how you are progressing and do you still have flare ups. Anne
CommentTO CHRIS WHO POSTED 8/1/09. Could you share your progress to this point with your vulvodynia. I am also following Dr. Stewarts V book and clobetasol. I would like to know how you are progressing and do you still have flare ups. Anne
CommentTO SITE MEMBERS WHO LIVE IN SOUTH JERSEY, I have been suffering for 2 years with vulvodynia. I went to my dermatologist about 8 months ago and I had a check up again today. He said the skin condition is completely gone. He has been a great supporter for me and he has given me all the proper advise. If anyone is interested in his name and phone number please post on the site and I will be glad to share the information with you. Believe me you will be very glad you did. Amzy
CommentHi Amzy, I am really happy to hear you are doing so well. I live in NJ. Please post the name of the dermatologist who helped you. I would be very interested in going to see him/her. I know I am not the only one. Thank you, Loredana
CommentHi Amzy, I am really happy to hear you are doing so well. I live in NJ. Please post the name of the dermatologist who helped you. I would be very interested in going to see him/her. I know I am not the only one. Thank you, Loredana
CommentTo LOREDANA, Hi I remember seeing your postings last month about 20/20. Here is the Doctors phone number 609-567-0030. His name is Stanley Rekant. He also has another location in South Jersey. I advise you to call soon because he is very busy and is leaving for vacation soo. Please post and let me know the outcome. You can tell him that someone on this forum gaave you his name. He will know that it is me. I wish you MUCH LUCK Amzy
CommentTOLOREDANA Hi, I remember seeing your past posting on 20/20. I sure would love to know about Dr. Goldstein. Any way here is the phone number Dr. Stanly Rekant, 609-567-0030. I suggest you call very soon as he is very busy and I think he is planning a vacation, If you decide to see him you can tell him you got his number from this forum. He will know what you are talking about. MUCH LUCK and please post your outcome. Amzy
CommentTOLOREDANA Hi, I remember seeing your past posting on 20/20. I sure would love to know about Dr. Goldstein. Any way here is the phone number Dr. Stanly Rekant, 609-567-0030. I suggest you call very soon as he is very busy and I think he is planning a vacation, If you decide to see him you can tell him you got his number from this forum. He will know what you are talking about. MUCH LUCK and please post your outcome. Amzy
CommentTOLOREDANA Hi, I remember seeing your past posting on 20/20. I sure would love to know about Dr. Goldstein. Any way here is the phone number Dr. Stanly Rekant, 609-567-0030. I suggest you call very soon as he is very busy and I think he is planning a vacation, If you decide to see him you can tell him you got his number from this forum. He will know what you are talking about. MUCH LUCK and please post your outcome. Amzy
CommentI have never seen a dermatologist for my general vulvodynia. I know this is a stupid question, but are most dermatologists familiar with vulvodynia? Exactly how does a dermatologist do an examination for vulvodunia? I do have a dermatologist (female), but have never talked with her about vulvodynia.
CommentI have never seen a dermatologist for my general vulvodynia. I know this is a stupid question, but are most dermatologists familiar with vulvodynia? Exactly how thorough is the dermologist exam? I do have a dermatologist (female), but have never talked with her about vulvodynia.
CommentI have never seen a dermatologist for my general vulvodynia. I know this is a stupid question, but are most dermatologists familiar with vulvodynia? Exactly how thorough is the dermologist exam? I do have a dermatologist (female), but have never talked with her about vulvodynia.
CommentTo Gellexi: I think it depends on your dermotologist because I asked if our dermotologist would check for Vulvodynia on my wife and was told "No!". The office has both male and female doctors but I think they do not do any exam or treatment of the genitalia. I made this call several years ago when my wife first had the thinning of her vulva and recurrent tear at the six o'clock position. I had hoped since it was a skin condition that one of these dermotologists could better discover if the skin had a specific disease or deficit which was causing the thinning, no such luck since they would not do the exam. Maybe things have changed since then? We do go to have general "skin" checkups and mapping to stay safe from skin cancer.
CommentTO GELEXIE AND FRANK B. In response to your question regarding Derms: regarding vulvodynia please research and you will see that they are one of the doctors that can treat it. That is how I have been helped and believe me it took me over a year.
CommentI am having mixed emotions right now. I have 'self-diagnosed' myself with vulvodynia. I am in the process of trying to find a physican in my area that knows about this condition. Here's my story: I started having urinary issues - pain, frequency, urgency - about 3 months ago. I had started a new exercise program and assumed that I was in need of a bladder tack ( I have 2 children and just turned 40). I went to see my OB/GYN and was actually diagnosed with interstitial cystitis. In the midst of trying to get this diagnosis, I had started having an itchy, raw-feeling in my vaginal area. I just assumed it was from sweating during my exercise program, my OB said he felt that is what it was as well. Nothing I tried - Hydrocortisone cream, monistat, nystatin, vaselind - seemed to help. It actually seemed to make things worse (except for the Vaseline, which helped some). After several weeks, it finally got some better. I still had some discomfort after intercourse - burning, raw feeling - but it was tolerable. I am now having my third episode with this since May of this year. I have always had issues in this area, since I was a child. As a child, if I ate too many sweets(?), my vaginal area would get very irritated and raw feeling. My mother always used mycolog cream - it would relieve symptoms. As a teenager, I would go thru spells where I would have recurrent UTI's for several months. At 18 I had a cystoscope done and was just told to stay away from soft drinks. Since I was in my early twenties, I have battled yeast infection after yeast infection. I was on Diflucan for 3 months straight - as a last resort. It didn't really seem to work - as usual, the symptoms subsided without any rhyme or reason. About 6 years ago, I had my first experience with the burning, raw, itchy pain in the vulva area. It was awful - the raw burning would bring me to tears. Of course when I went to my OB, he had no answer for me. It eventually subsided after several weeks. I have always had issues with sensitivity in that area. Since I was little, I have had issues with irritation and itching in the vaginal area. I have been told it was an allergy to having a cat in the house; allergy to laundry detergent and/or bath soap; sensitivity to soft drinks, sugar, caffeine, my own sweat. I have always thought that I was just crazy. But since finding all this information on vulvodynia, I finally realize that I am not the only one that has this kind of problem, which is comforting. But knowing there is no cure and I haven't found anybody in my area to help with treatment is somewhat disconcerting. Fortunatley I have a wonderful husband who goes above and beyond to help me work thru this. Any suggestions, comments, whatever will be great to hear!! If nothing else, I feel like somebody who understands first hand might read this and that makes me feel some better.
CommentI am having mixed emotions right now. I have 'self-diagnosed' myself with vulvodynia. I am in the process of trying to find a physican in my area that knows about this condition. Here's my story: I started having urinary issues - pain, frequency, urgency - about 3 months ago. I had started a new exercise program and assumed that I was in need of a bladder tack ( I have 2 children and just turned 40). I went to see my OB/GYN and was actually diagnosed with interstitial cystitis. In the midst of trying to get this diagnosis, I had started having an itchy, raw-feeling in my vaginal area. I just assumed it was from sweating during my exercise program, my OB said he felt that is what it was as well. Nothing I tried - Hydrocortisone cream, monistat, nystatin, vaselind - seemed to help. It actually seemed to make things worse (except for the Vaseline, which helped some). After several weeks, it finally got some better. I still had some discomfort after intercourse - burning, raw feeling - but it was tolerable. I am now having my third episode with this since May of this year. I have always had issues in this area, since I was a child. As a child, if I ate too many sweets(?), my vaginal area would get very irritated and raw feeling. My mother always used mycolog cream - it would relieve symptoms. As a teenager, I would go thru spells where I would have recurrent UTI's for several months. At 18 I had a cystoscope done and was just told to stay away from soft drinks. Since I was in my early twenties, I have battled yeast infection after yeast infection. I was on Diflucan for 3 months straight - as a last resort. It didn't really seem to work - as usual, the symptoms subsided without any rhyme or reason. About 6 years ago, I had my first experience with the burning, raw, itchy pain in the vulva area. It was awful - the raw burning would bring me to tears. Of course when I went to my OB, he had no answer for me. It eventually subsided after several weeks. I have always had issues with sensitivity in that area. Since I was little, I have had issues with irritation and itching in the vaginal area. I have been told it was an allergy to having a cat in the house; allergy to laundry detergent and/or bath soap; sensitivity to soft drinks, sugar, caffeine, my own sweat. I have always thought that I was just crazy. But since finding all this information on vulvodynia, I finally realize that I am not the only one that has this kind of problem, which is comforting. But knowing there is no cure and I haven't found anybody in my area to help with treatment is somewhat disconcerting. Fortunatley I have a wonderful husband who goes above and beyond to help me work thru this. Any suggestions, comments, whatever will be great to hear!! If nothing else, I feel like somebody who understands first hand might read this and that makes me feel some better.
CommentTo SHELIA, First, you are certainly not crazy. I have been there and I can hear your distress. This is the right place to be, This site has given me a lot of help. I don't know what area you are from but a good book to get is the V Book by Elizabeth G Stewart. I did not find out about it until recently but it may help you. I am under the care now of my dermatologist who diag. me 8 months ago. Dermatologist can help with certain types of vulvodynia. Biopsys are an option if your condition cannot be seen in an exam. My obg also gave me the same diag as my dermatologist but not the right meds. I believe that there maybe an answer in the V book and there is a vulvodynia specialist in Pennsylvania. i live in South Jersey. I am in remission but that certainly doesnt mean it won't come back. I am trying preventative regiment at this time. Good Luck
CommentHello everyone, I am 53, past menopause, had a hysterectomy 15 years ago, happily married for 33 years, and this was totally putting a cramp in my sex life. I don’t have THE answer but I do believe I have something to offer some of you. Several years ago I started having the occasional yeast infection treated successfully with difflican with the intermittent UTI treated successfully with antibiotics. Then they got worse and then came the dermatitis with the pain. I woke up one morning with what I now know to be vulvodynia (a name that includes several types of vulva pain because there are at least 3 types). Not only do I have great doctors but I have many friends around the US that are doctors who have been willing to listen to me and answer questions. Like many of you I felt desperate. I have used it all… creams, steroid creams, borax suppositories, and more. I could not figure out why it would get almost gone and come right back. There seemed to be hope and then in a kind of ebb and flow pattern it would get worse. I have done an enormous amount of research on this. I just wanted an answer for my problem. And I was demanding answers from many sources. I have learned so very much and I am so angry with the cosmetic industry right now I am ready to scream. I know that there are about 20 current studies going on right now dealing with what I am about to tell you. It sounds like a science fiction novel but it is true. Most cosmetics use what are called Neo-particles in them and no one can really tell you what they are. AHA or some other form of acid is in hundred of products now and it is known that it is absorbed into the cells. So… let’s talk chemical reactions and cross contamination. Yep! When I get out of the shower; in which I use very mild safe shampoo and conditioner and only some mild unscented (dove, recommended to chemo patients) I use a alcohol wipe to clean off any residue from the vulva area. I never use recycled toilet paper for clean up. And I never wash make up off in the shower, not even night creams. I do not use products with AHA and since I have done this… my pain disappeared in 2 weeks. So I told my daughter. She did the same and her pain was gone in a week. My sister and several friends have also found this successful. Now this does not treat your yeast or bacterial infections… you will still have to deal with clearing those up. But when I had no more pain… I could deal with the rest much easier. I am so happy to tell you I can call my problems below the waist cured. I am happy to answer any questions… feel free to write me. My advice is totally free. I am glad to give anyone my phone number to call also. Good Luck!
CommentHello everyone, I am 53, past menopause, had a hysterectomy 15 years ago, happily married for 33 years, and this was totally putting a cramp in my sex life. I don’t have THE answer but I do believe I have something to offer some of you. Several years ago I started having the occasional yeast infection treated successfully with difflican with the intermittent UTI treated successfully with antibiotics. Then they got worse and then came the dermatitis with the pain. I woke up one morning with what I now know to be vulvodynia (a name that includes several types of vulva pain because there are at least 3 types). Not only do I have great doctors but I have many friends around the US that are doctors who have been willing to listen to me and answer questions. Like many of you I felt desperate. I have used it all… creams, steroid creams, borax suppositories, and more. I could not figure out why it would get almost gone and come right back. There seemed to be hope and then in a kind of ebb and flow pattern it would get worse. I have done an enormous amount of research on this. I just wanted an answer for my problem. And I was demanding answers from many sources. I have learned so very much and I am so angry with the cosmetic industry right now I am ready to scream. I know that there are about 20 current studies going on right now dealing with what I am about to tell you. It sounds like a science fiction novel but it is true. Most cosmetics use what are called Neo-particles in them and no one can really tell you what they are. AHA or some other form of acid is in hundred of products now and it is known that it is absorbed into the cells. So… let’s talk chemical reactions and cross contamination. Yep! When I get out of the shower; in which I use very mild safe shampoo and conditioner and only some mild unscented (dove, recommended to chemo patients) I use a alcohol wipe to clean off any residue from the vulva area. I never use recycled toilet paper for clean up. And I never wash make up off in the shower, not even night creams. I do not use products with AHA and since I have done this… my pain disappeared in 2 weeks. So I told my daughter. She did the same and her pain was gone in a week. My sister and several friends have also found this successful. Now this does not treat your yeast or bacterial infections… you will still have to deal with clearing those up. But when I had no more pain… I could deal with the rest much easier. I am so happy to tell you I can call my problems below the waist cured. I am happy to answer any questions… feel free to write me. My advice is totally free. I am glad to give anyone my phone number to call also. Good Luck!
CommentTo All: One quick correction to the great post by "Tee", the suppositories are boric acid, not Borax. We are here to help eachother and since we are not perfect, every once in a while corrections need to be made. Tee, please don't take offense. I think you meant boric acid? Hope I'm right and that I didn't goof. Take care.
CommentI have had some relief with elavil (25 mg.) I was tired in the beginning for about a week, but felt better almost the first day. Have been on it for two weeks. I also seem some better staying on a diflucan regimen when the itching from yeast starts. I also have thought about a vulvectomy. Many have claimed relief and my doctor, who is experienced with doing the surgery, told me the remove the skin near the opening and pull down skin from the vagina. I would be happy to hear of any good results (or bad for that matter) from this surgery. Also, if anyone has used elavil and found it helpful. It also has helped my state of mind. I was getting depressed from suffering for over 2 1/2 years this last time. I have had it on/off since my 20s. I am now in my mid-50s. It works on your mind after a while. Please let me know your results from elavil and/or a vulvectomy. Thanks.
CommentFrank, Thanks for the correction... Yes you are right...Tee
CommentTO LOREDANA: Please let me know if you decide to see the Dr. I posted for you. I hope you saw it. I answered back the same day. Amzy
CommentTO LOREDANA: Please let me know if you decide to see the Dr. I posted for you. I hope you saw it. I answered back the same day. Amzy
CommentTO JEAN: If I were you I will not consider aggresive treatment like vulvectomy. It seems and I believe your problem is yeast since you get relief from diflucan. Did you ever work around treating your yeast. This all starts in the GUT. Unless you cure the gut this disease will always come back. I also had mine since I wa in the 30 when I becaome sexually active and took tons of birth control pills which feeds the yeast enormously and of course super tons of antibiotics for sinus and bladder problems. Diflucan which I took for 8 months gave me relief but it was always coming back. I also have Interstitial cystitis, sinusities and chronic bronchitis. I have been symptom free from being treated by excellent accuouncturist and herbalist who treats my GUT. It helps me though I must say that it takes a long time and also you experience very die offf and other problems come about until you body balances. It is not easy and very expensive as well if you go to a real expert one. If you would like to chat let me know, I will give you my e-mail address if you are interested. Good luck and be carful with operation. If elavil helps you and you do not have any side effects on it, go for it. It has no harm and why not if it give relief. Just pray that you do not build tolerance on it. Good luck.
CommentTO JEAN: If I were you I will not consider aggresive treatment like vulvectomy. It seems and I believe your problem is yeast since you get relief from diflucan. Did you ever work around treating your yeast. This all starts in the GUT. Unless you cure the gut this disease will always come back. I also had mine since I wa in the 30 when I becaome sexually active and took tons of birth control pills which feeds the yeast enormously and of course super tons of antibiotics for sinus and bladder problems. Diflucan which I took for 8 months gave me relief but it was always coming back. I also have Interstitial cystitis, sinusities and chronic bronchitis. I have been symptom free from being treated by excellent accuouncturist and herbalist who treats my GUT. It helps me though I must say that it takes a long time and also you experience very die offf and other problems come about until you body balances. It is not easy and very expensive as well if you go to a real expert one. If you would like to chat let me know, I will give you my e-mail address if you are interested. Good luck and be carful with operation. If elavil helps you and you do not have any side effects on it, go for it. It has no harm and why not if it give relief. Just pray that you do not build tolerance on it. Good luck.
CommentTo AMZY, yes, thank you, I saw your post replying to me. I got the name of the doctor. I plan to go see him in a few weeks. I am currently away on a work assignment. I did not understand, however, whether he examines his patients. In other words, does he perform an OBGY type exam? I am asking because I went to see a dermatologist about a year ago and he was a complete waste of my time. As Frank wrote, he did not examine and he did not know what to do with me (albeit his receptionist had said otherwise). For the person who last posted: About Elavil. I took it for 1.5 years. It helped a lot my symptoms but it does not cure so, unless you take it forever, it doesn't do much. I am currently off it and try to deal with the symptoms. However, there has been a time, when I was ready to jump off a window, at that time Elavil was a blessing. If you are really in bad shape, and you can tolerate it, go for it. Just 2 tips: Careful with what you eat. It will make you crave sugar and you may gain weight (I did). It will make you sleepy at first but you'll get used to it. Regardless of what they tell you, start with the minimum dosage (10mg) and see what works for you. I saw significant improvement on 25mg. Good luck!
CommentTO LOREDANA The Doctor examined my vulva, labia and looked with some type of instrument. He did not perform an internal but he said he could see inside the vagina. He gave me the diag. of Lichen Scelorsus as did my OBG. But the OBG perscribed meds that did not work Dr Rekant has been my derm. for years. I went to him just to talk I was a little embarrased to have him look at my V. He was very understanding and said I could come in and just talk to him about the type of pain and irritation I was feeling. By the time we were done talking I decided to let him give me a visual exam and when he did he gave me that diag. The treatment I am on has helped me greatly. As I said it is cronic and can come back. But he is very understanding . Lots of people post right after each other so please let me know how you make out. Amzy
CommentTO LOREDANA The Doctor examined my vulva, labia and looked with some type of instrument. He did not perform an internal but he said he could see inside the vagina. He gave me the diag. of Lichen Scelorsus as did my OBG. But the OBG perscribed meds that did not work Dr Rekant has been my derm. for years. I went to him just to talk I was a little embarrased to have him look at my V. He was very understanding and said I could come in and just talk to him about the type of pain and irritation I was feeling. By the time we were done talking I decided to let him give me a visual exam and when he did he gave me that diag. The treatment I am on has helped me greatly. As I said it is cronic and can come back. But he is very understanding . Lots of people post right after each other so please let me know how you make out. Amzy
CommentAlthough our dermatologist did not want to examine for Vulvodynia (I need to find out why!), these doctors can and do treat the genitalia for an assortment of diseases and conditions. This link was interesting, maybe if printed and presented to your dermatologist it will be of help. Thanks Amzy. http://dermatologytimes.modernmedicine.com/dermatologytimes/article/articleDetail.jsp?id=616252&sk=&date=&pageID=2
CommentI took my wife to the dermatologist this afternoon to have a mole removed. The procedure will be done in three sessions to reduce the size of the scar. When he was done I asked to speak to him in private. My wife is still a little shy and private about her Vulvodynia and I while I respect her individualism, I still want answers! I told the doctor about her condition and my experience when I asked if they would check her for Vulvodynia, he said I was misinformed by whom ever I spoke with that day. Yes, they do examine and treat for symptoms of Vulvodynia, Lichen's, STD's, and much more. I told him given all she has been through including Breast Cancer and her current medication Tamoxifen, I was not about to pressure her to be examined or treated any further. Much as it saddens me to accept we are older and scarred by Vulvodynia and Cancer, and I cannot expect some miracle cure or treatment at this point. I still hold on to hope for all who suffer and all who will suffer because there is not enough research and understanding. I am thankful for all the time my wife and I did have before Vulvodynia and I am thankful we are still together. There are times when I get frustrated, mad, sad and all the rest, I'm human, I'm passionate and I'm still in love but unable to fully express myself. Life is not perfect, at least not always.
CommentWOW I am really confused. Do dermatologist treat this condition or not? I have been reading the postings on this site for several weeks now. I dont't know what to do about my condition which is mostly burning. Dermatologist or Gynogologist. My ObG couldn't do much for me.
CommentSome Dermatologists treat Vulvodynia, but I've found that most don't. I called a bunch of them til I found one or 2 who treated "vulvar dermatoses". I have Lichen Sclerosis and she treats that. When she examines me, she looks at my vulva, but not into my vagina.
CommentSome Dermatologists treat Vulvodynia, but I've found that most don't. I called a bunch of them til I found one or 2 who treated "vulvar dermatoses". I have Lichen Sclerosis and she treats that. When she examines me, she looks at my vulva, but not into my vagina.
CommentTee - you said you use alcohol wipes on your vulva. That sounds painful to me. Doesn't alcohol sting when applied to already irrritated skin? Jean - I have been taking Elavil for years for insomnia. I take 125 mg at night; it does not affect my vulvodynia. I throw this out to anyone - I was diagnosed with Multiple Sclerosis in 1987, just before I started to experience persistant vulvar pain. MS is an autoimmune disease; I think vulvodynia is, too. There may be a connection. But when I talked to my neurologist about the vulvodynia, he was not familiar with the condition, and so the subject got dropped. Oh, well.
CommentTee - you said you use alcohol wipes on your vulva. That sounds painful to me. Doesn't alcohol sting when applied to already irrritated skin? Jean - I have been taking Elavil for years for insomnia. I take 125 mg at night; it does not affect my vulvodynia. I throw this out to anyone - I was diagnosed with Multiple Sclerosis in 1987, just before I started to experience persistant vulvar pain. MS is an autoimmune disease; I think vulvodynia is, too. There may be a connection. But when I talked to my neurologist about the vulvodynia, he was not familiar with the condition, and so the subject got dropped. Oh, well.
CommentTO SUE I read your posting about dermatologist. I feel lucky that mine does help me. I have had some great help from a several site memebers and at least 2 were named Sue as well. I am not sure what dermatosis is. What do you use to help you?
CommentTo Marge: I don't think yeast is the problem, or at least not the only one. I was mostly free from all pain for about 15 years until change of life. The hormonal change brought it back on. I canot use HRT because that was what started this mess years ago. They only other thing I can see is when I diieted for several months and lost weight it seeemed to come back. Both at the start of change of life and then 6 years into it. The in between years I was pain free, but couldn't have sex without pain. I got on vagifem for that. I was on it for over a year before the last episode which has last 2 1/2 years. So, I don't think there is a correlation there. I am considering the surgery because there is a chance it will help and I've tried so many other things that haven't. My skin is extremely tender and flares with any topical cream. Shots have helped, but the last ones left me so itchy it hurt.
CommentJean. If you used vagifem for over a year, you could have overgrowth yeast in the vagina. Estrogen feeds yeast. When I used them briefly before, I burned more from it. There was one poster who used estrace internally and developed vulvodynia. If you a problem with yeast even minute and aggravate it with birth control and internal estrogen, it can developed in vaginal yeast and cause inflammation. Just my thought
CommentMarge: You may be right, but if I need the estrogen because of dryness, what are my alternatives? I've used vagifem for 3 years or so. But, I had problems before I got on it too. The biggest problem was with the change of life. I had 2 or 3 major flares, excruciating pain and inflammation. They went away. Then, about 4 years later, I started the burning again. That was 2 1/2 years ago. Since then I learned what I had and saw a specialist. So, we're trying everything with me. It seems my immune system is bad. The blood work showed it was. I have occasional IBS and excema problems. But, not too many or too often. Mainly, it's vulvodynia. It has ruled over me for years. I keep trying things to get better, and won't quit. Thanks, if you have any other thoughts, or anybody else does I'd love to hear them.
CommentTo Jean: Please look through past guestbooks, at least seven of them. You will find posts by Women who had some glads removed and at least one woman who has more extensive sugery and skin removal. I remember her saying they removed too much tissue! I only caution you that if the surgery makes things worse as in this Lady's case you might be in more pain. Please do more research and even google the procedure to get more detailed information. Good Luck.
CommentTO SUE who posted on 9/14. I was hoping you could tell me more about your condition. Do you have burning or itching and what medication are you using? I am so confused as to what Dr. to go to that I am going out of my mind. I would appreciate any suggestions or information. Carol
CommentHi: Vulvar Dermatoses are skin conditions such as Lichen Sclerosis and Lichen Planus, dermatitis, etc. My L.S. is supposedly in remission, but it's been replaced by Vulvar Vestibulitis. I apply Estrace cream 2X daily; about 1 pea sized amount each time, sometimes emu oil or vitamin e oil for dryness or irritation, the occasional Aveeno bath to soothe burning, and when all else fails, the icepack between my legs. We have water rationing here in Ca., so I don't take baths unless absolutely necessary. Sitting for long periods of time causes me discomfort and intercourse is still excruciating, but I don't have the constant pain like I used to. The last time we had sex, I took a warm Aveeno bath afterwards and then applied ice to my vulva. That relieved the pain pretty well. I get checked annually by a woman Dermatologist to check my vulva to see if the L.S. is still in remission. However, I have to find a Gyno to treat me for the Vestibulitis. My Internist has been prescribing the Estrace cream for me since I haven't found a Gyno to help me. Gynecologists seem to know all about Lichen Sclerosis, but not enough of them know about Vulvar Vestibulitis. Call around to different Gyno's and/or Dermatologists and ask them if the treat Vulvodynia. I wish you well.
CommentTO SUE FROM CAROL. Thank you for your response. I was going to start with my PCP and hope she can direct me to a good OBG or as you suggest a Dermatologist. I have no idea what any of those conditions you mentioned, are but I will start searching. The only thing I have really seen was a cream called clobetasol (spelling?) but I dont know much about it. Thanks Carol
CommentCarol, I forgot to say that I use Clobetasol ointment once weekly to keep the Lichen Sclerosis at bay. Sorry, my brain isn't working too well right now. Sue
CommentJean: Try to educate yourself about systemic yeast. If you have myriad of problems like IBS and ezcema, no matter how light they are, vulvodynia. This is all yeast in the gut. Unless you treat your gut and your whole body, all these won't resolve. I must admit, it is not easy, it takes good alternative doctors and discipline. Yeast do not always act up. When we are symptom free they can become dormant and go wild again, like sex, diet, stress and what have you. All all alternative doctors say the ESTROGEN feeds yeast greatly. Just my thought, but I sugggest do some research.
CommentTO SUE FROM CAROL: That's Ok I have started researching since your post to me. To be honest, I was up half the nite on the internet. This burning is driving me crazy. I have an appt. today. I found that vaginitis. LS and vestibulities all burn and I think I found that they are all treated with that cream. I also have an irritation at the top. I read about the the Q tip test and I tried it and that does not hurt, I guess I will have to see what the doctor has to say. CAROL
CommentTO SUE from Amzy Everything just rang a bell in my head. Thanks so much!!!!!
CommentTO LOREDANA FROM AMZY I just wanted to let you know that I won't be posting on the site. If you decide to try the dermatologist we spoke about I wish you much luck and good health. I will look on the site later to see if you have posted any comments. If you want to get in touch with me post your e mail for me I am in the process of changing mine. AMZY
CommentTO LOREDANA FROM AMZY I just wanted to let you know that I won't be posting on the site. If you decide to try the dermatologist we spoke about I wish you much luck and good health. I will look on the site later to see if you have posted any comments. If you want to get in touch with me post your e mail for me I am in the process of changing mine. AMZY
CommentSue, I just wanted to let you know I saw my Dr. today she thinks my problem has to do with hormone levels. She put me on one creme for now. I will pick up the script tomorrow Not sure what it is. I am really confused. Carol
CommentJust a word of caution to any lady who's doctor thinks their problem is "hormones" and is prescribing Estrace.Please have your hormone levels checked ! Taking Estrace if you don't need it can put you at risk for other problems. When doctors don't know what is causing your symptoms, rather than doing the necessary tests they often throw medications at you that probably won't help and might harm. Vulvodynia is the unknown illness, might look like Lichen's or low Estrogen but that does not mean those conditions exist. I say this because my wife had the thinning skin of the Vulva so several gyn's prescribed Estrace even though an endocrinologist said her hormone levels were normal. Several gyn's said what she had looked like Lichen's but the biopsy proved otherwise! What we know she had for sure was Estrogen sensitive Breast Cancer which was probably made worse by all the Estrace. Please demand tests to prove or disprove the doctor's theories or assumptions prior to taking medications. Best of luck.
CommentI visited tihs site--oh five years ago maybe with my cmoplaint of struggling with this issue. I've been free of it for two years now. After it getting much worse after haivng my first baby, bign plagued with recognized resistant yeast infection, I found a Naturopathic physician who diagnosed primarily through muscle testing. in her holistic theory, gettign to the root of health problems happens in layers. My first layer to be dealt with was the yeast. It went away with the first attempt, through natural products. Some symptoms went away, but not all my pain. Then at my next visit, the ND peeled back the next layer and said my nerves were damaged because there was bacteria that were attracting certain mineralizations--crystals--that were forming on my nerves--which led to the sharp, pinching sensations I felt with contact. After a treatment for that bacteria nad sometihng to dissovle the crystals, i've been free of it all ever since. Well, also some emotinal resolution--holistic healing always must address the mind as well as the body.
CommentI visited this site--oh five years ago maybe with my complaint of struggling with this issue. I've been free of it for two years now. After it getting much worse after haivng my first baby, being plagued with recognized resistant yeast infection, I found a Naturopathic physician who diagnosed primarily through muscle testing. in her holistic theory, getting to the root of health problems happens in layers. My first layer to be dealt with was the yeast. It went away with the first attempt, through natural products. Some symptoms went away, but not all my pain. Then at my next visit, the ND peeled back the next layer and said my nerves were damaged because there was bacteria that were attracting certain mineralizations--crystals--that were forming on my nerves--which led to the sharp, pinching sensations I felt with contact. After a treatment for that bacteria and something to dissolve the crystals, I've been free of it all ever since. Well, also some emotional resolution was part of the solution--holistic healing always must address the mind as well as the body.
CommentI visited this site--oh five years ago maybe with my complaint of struggling with this issue. I've been free of it for two years now. After it getting much worse after haivng my first baby, being plagued with recognized resistant yeast infection, I found a Naturopathic physician who diagnosed primarily through muscle testing. in her holistic theory, getting to the root of health problems happens in layers. My first layer to be dealt with was the yeast. It went away with the first attempt, through natural products. Some symptoms went away, but not all my pain. Then at my next visit, the ND peeled back the next layer and said my nerves were damaged because there was bacteria that were attracting certain mineralizations--crystals--that were forming on my nerves--which led to the sharp, pinching sensations I felt with contact. After a treatment for that bacteria and something to dissolve the crystals, I've been free of it all ever since. Well, also some emotional resolution was part of the solution--holistic healing always must address the mind as well as the body.
CommentTo Frank B. Thanks for the response. I am not sure what the medication is for but I will go back next week for blood testing. Carol
CommentTo Frank: I've been reading past guestbooks, and I want to thank you for your posts. You give great caring advice. It's great that you are so concerned about your wife. Your posts show your love and committment to her. I do need to say something, and please don't take this the wrong way: your comments about the extent of your sexual frustrations have increased my anxiety and feelings of helplessness. Being a woman and having to deal with not only frustration, but the physical and psychological pain of this condition have hurt me deeply. I know you're being honest, but it just hurts me to my soul to hear these things now. I don't want to hear about the frustrations of the spouse of a woman with VV right now. It only confirms my belief as a single woman, that no guy will put up with this. A husband that knew me before as a fully functioning woman, perhaps...but the way I am now- damaged- I don't know... And after suffering with this for a year and seeing the some of the top specialists and trying numerous treatments, I wonder why I should go on living. Suicide seems like the only way out of this lonely existence. I know you didn't mean to hurt anyone on this forum. I know it wasn't intentional, but to all the guys out there who want to post on here, could you please speak of your feelings on another forum... Because right now, it just makes me feel even more lost and alone and hopeless... :(
CommentTo Frank: I've been reading past guestbooks, and I want to thank you for your posts. You give great caring advice. It's great that you are so concerned about your wife. Your posts show your love and committment to her. I do need to say something, and please don't take this the wrong way: your comments about the extent of your sexual frustrations have increased my anxiety and feelings of helplessness. Being a woman and having to deal with not only frustration, but the physical and psychological pain of this condition have hurt me deeply. I know you're being honest, but it just hurts me to my soul to hear these things now. I don't want to hear about the frustrations of the spouse of a woman with VV right now. It only confirms my belief as a single woman, that no guy will put up with this. A husband that knew me before as a fully functioning woman, perhaps...but the way I am now- damaged- I don't know... And after suffering with this for a year and seeing the some of the top specialists and trying numerous treatments, I wonder why I should go on living. Suicide seems like the only way out of this lonely existence. I know you didn't mean to hurt anyone on this forum. I know it wasn't intentional, but to all the guys out there who want to post on here, could you please speak of your feelings on another forum... Because right now, it just makes me feel even more lost and alone and hopeless... :(
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CommentTo Miriam & All: You are so right and I do apologize. I promise not to vent my personal feeling again and I hope you are able to concentrate on getting relief from your symptoms and not the frustrated ranting on a lonely old guy. I don't love or care about my wife any less and from reading many of the past posts there are plenty of good men who not only stay with their wives who have these problems but also fall in love and get married. I am only one person and all men should not be judged by my thoughts good or bad. Every situation is unique and to assume no one will love you because you have an illness that prevents specific intimacy is not fair to you or the men who would love to be with you! Once again I apoligize for thinking this was the place to share such intimate thoughts, in my case it is not and I'm glad you shared this with me before I continued to cause harm. I hope you can forgive me and believe that my greater goal is to be supportive and helpful. I've resisted seeking counceling for my issues, but it's obvious that's what I really need. I'll continue to offer general information in areas that do not include such disturbing personal thoughts. Thanks and take care. Frank B.
CommentFor R. Lannan: How long did it take you to get better? Can you share your protocol. I honestly believe imbalances has a lot to do this with this, especially yeast. Thanks
CommentFor R. Lannan: How long did it take you to get better? Can you share your protocol. I honestly believe imbalances has a lot to do this with this, especially yeast. Thanks
CommentTO MIRIAM I just want to say to you, YES I agree with you 100%. I have bee hurt by a site member also, that is why I will not put my e mail address down. I have been and still am in the same state of mind as you BUT having said that Suicide is never the answer. I don't know what you have been told by doctors, but there are so many reasons for this pain. Age, lifestyle, foods, etc. are so many reasons for this condition. Have you been told exactly what you have? XXXXXXXX
CommentTO MIRIAM I just want to say to you, YES I agree with you 100%. I have bee hurt by a site member also, that is why I will not put my e mail address down. I have been and still am in the same state of mind as you BUT having said that Suicide is never the answer. I don't know what you have been told by doctors, but there are so many reasons for this pain. Age, lifestyle, foods, etc. are so many reasons for this condition. Have you been told exactly what you have? XXXXXXXX
CommentI have suffered from severe Vulvodynia for about a year. I had seen 3 urologists and 2 gynocolgists before a biopsy was done and I was diagnosed.So far treatment has been unhelpful. I am extremely depressed, 64 yeard old and other wise healthy.
CommentI have suffered from severe Vulvodynia for about a year. I had seen 3 urologists and 2 gynocolgists before a biopsy was done and I was diagnosed.So far treatment has been unhelpful. I am extremely depressed, 64 yeard old and other wise healthy.
CommentI have suffered from severe Vulvodynia for about a year. I had seen 3 urologists and 2 gynocolgists before a biopsy was done and I was diagnosed.So far treatment has been unhelpful. I am extremely depressed, 64 yeard old and other wise healthy.
CommentTo Susan - Can you share your diag. with us and the treatments you have tried. I am 68 years old and I have just begun to fight.
CommentThank you Frank... I appreciate your thoughtful reply To XXXXXXX: I'm sorry that someone has hurt you on here... this V sucks! and yes I have a definitive diagnosis and am receiving top quality care...Vestibular Vestibulitis is the diagnosis... it's just really starting to get to me right now, and I just don't know how to live my life around this... I'm just in tears everyday about this pain and what it's done to my life... I don't want to bring other ppl down, so I'll stop for now.
CommentHI MIRIAM FROM XXXXXXX I am glad to hear back from you. I still can't pronounce what my dr. said I have. All I know is there are white patches that I CAN"T see in the V. I am using a steroid creme right now. What treatment are you on if want to disclose it.
CommentI do think that suicide is the only way to be guaranteed free of pain. I've put up with this condition for a long time, and I am so tired of so much pain every single day. There is no other way around it. .But that being said, I just got married a few months ago to a wonderful, thoughtful, amazing guy. He knows all about the vulvodynia, and he does everything he can to help me through the pain. Sometimes just going outside to watch the sunset together helps me to look away from the pain, at least for a little while. My husband once told me that if he had one wish, it would be that I would no longer have pain. That's the most selfless thing I ever heard. I am very lucky to have this man in my life.
CommentI do think that suicide is the only way to be guaranteed free of pain. I've put up with this condition for a long time, and I am so tired of so much pain every single day. There is no other way around it. .But that being said, I just got married a few months ago to a wonderful, thoughtful, amazing guy. He knows all about the vulvodynia, and he does everything he can to help me through the pain. Sometimes just going outside to watch the sunset together helps me to look away from the pain, at least for a little while. My husband once told me that if he had one wish, it would be that I would no longer have pain. That's the most selfless thing I ever heard. I am very lucky to have this man in my life.
CommentTO ANYONE WHO THINKS SUICIDE is the answer to anything is wrong. I am glad to hear from Mirium with no mention of it and I don't think we should mentioned it again. Gelixie I am happy for you and you new husband. I have been dealing with this for years and have a wonderful husband also. Thank You
CommentTO MIRIAM FROM XXXXX I hope you are feeling a little better.
CommentHello everyone I'm fed up! Been in and out of Dr's offices for 6 months after unprotected sex. I've been tested for all std's twice and all negative. I've been over obsessed and worried about herpes because of the burning and itching I've been getting in my vaginal and sometimes rectal area. There have been no outbreaks and my blood work came back negative for herpes both times I tested after 3 months of the unprotected sex. I can't help but think that I got "something" from this incident and I really need to move on with my life. My Dr. said that it takes a while to find out if you have herpes but other sources have told me that the blood will show it at 3 months for sure. The CDC has quoted that. Can I get past the herpes scare or do I need to worry that this pain is signaling that a herpes outbreak is on the way? Someone please help me because I am gong crazy to the point of depression and anxiety every second of my life. To top it off my Dr. prayed with me today when I left to help me "forget" about all of this :(
CommentHello everyone. I havent posted in months, years. I am back on this site because I have relapsed into wanting to eat foods that cause my vulva pain. I have gotten this ugly disease back in 1999, I didnt know how to treat it other than steroid/vani cream. It has helped me but then I couldnt stand my vestibular glands were always in pain. I had to sit at work for 9 hoursa day and deal with the pain. So I then had surgery. That has helped. Around that time, I had learned that yeast and food allergies were causing the pain and has caused the vestibulitis. So I had to go on a yeast free, sugar free, wheat free, gluten free, low oxolate diet. That has helped and I could honestly say that I am pain free as long as I watch my diet. I have gone months and years to being pain free. I even began feeling normal again. But now I have relapsed. With all this stress going on in my life, I have chronic stress, anxiety, depression, I am single, my husband left me about 1 year after we were married which was about 1 year after I was diagnose with the disease. Anyways, I can have sex, I have been having sex since the surgery, the only problem is, is that the area where the vestibular glands were, when they removed part of that area, my perinium was partly removed and so when I have sex, I have to only perform in certain positions so my perinium wont tear. It has torn like 3 times since the surgery I had about 9 years ago, but it just heals back up. Of course I have to wait about 6 weeks for it to heal back before I can begin having sex again. Anyway, I just want to say to the last lady who posted who think she may have herpes. You say you have a lot of bunring and itching and the lab test keeps showing negative for everything. I just want to say that you may have a yeast infection. Some people get yeast infections from having sex because you can get yeast from a males sperm. And if you do have a yeast infection, doing test may not always be accurate because the yeast could be hiding in the tissue and may not show up on cultures. I know this because that is how strong my yeast is. I have been told I dont have a yeast infection but then I have the symptoms and when I go get some herbal suppliments to treat it, it goes away. The dr wont give me a prescription for it unless it shows up in the cultures. But mine never shows up so I go buy some Caprilic Acid and it always helps. But anyway I am so frustrated guys, It is soooo hard trying to stay away from sugar foods, I try to go get the foods that are sweetend with splenda but my body does not want sugar substitutes anymore. I am so sick of this crap! I cant eat 1 apple, 1 banana, 1 orange nor can I even eat any walnuts without getting a damn instant yeast infection. I try to eat healthy but all that I eat causes me reactions. I just dont want to eat any kind of food any more! I am seriously thinking about becoming anorexic because I am really starting to hate food and what it is doing to my body! I think the people who have anorexia has it better than us who try to eat to survivie but only eat to be in pain. I dont want to kill myself. i have a couple kids to live for! But food has become my enemy and I dont want to eat it anymore!
CommentLynn Thank you for sharing your story. I know that maybe I am a little over obsessed about herpes, I just didnt know what to think after this occured with a new partner. Its the first thing on anyones mind when it occurs like that. I have some Dr.'s telling me the blood test is conclusive and others saying that the blood might not show it for years. I dont know what to think anymore. But you are right about yeast. I asked my Dr. to perform a blood test for Candida and she said there is no such thing. I read that there is so I am confused. I took the water and spit test, have you hear of it? If you spit in the glass of water and it clouds or starts stringing down, then you have high levels of Candida. I did the test and sure enough, it clouded just as described. So maybe this is my problem I just have noone that will work with me on this. I am going to another OB in 2 weeks and going to ask about this. I really feel your pain and if you'd like to email and talk anytime my email address is posted.
CommentLynn Thank you for sharing your story. I know that maybe I am a little over obsessed about herpes, I just didnt know what to think after this occured with a new partner. Its the first thing on anyones mind when it occurs like that. I have some Dr.'s telling me the blood test is conclusive and others saying that the blood might not show it for years. I dont know what to think anymore. But you are right about yeast. I asked my Dr. to perform a blood test for Candida and she said there is no such thing. I read that there is so I am confused. I took the water and spit test, have you hear of it? If you spit in the glass of water and it clouds or starts stringing down, then you have high levels of Candida. I did the test and sure enough, it clouded just as described. So maybe this is my problem I just have noone that will work with me on this. I am going to another OB in 2 weeks and going to ask about this. I really feel your pain and if you'd like to email and talk anytime my email address is posted.
CommentTO MIRIUM; Havent heard from you. Hope you are doing ok. xxxxxx
CommentHi Leticia. Thank you for the response. Do me a favor please? I am no dr at all but I am a massage therapist, I know a little about health. Also I have had health struggles with eating food and food causing me pain down in my vulva and even in my head. But your symptoms really sound like a candida infection. Candida is never always show up on test because they can hide in the tissue cells deeply. Please try to go to the health food store and get some caprilic acid or even oregono oil to help kill the yeast that may be growing inside of you. At the same time, you MUST stay on a sugar free, wheat free diet. Try the supplements and the diet for a at least 1 week. If you improve, you know for sure it is most likely a yeast infection you had. If you do the sugar free diet, and begin to crave something sweet, just eat some sugar free cookies, diet soda or anything that is sugar free that is a sugar substitute and that will help you to not give into the temptation of yeast. yeast loves sugar and that is how it lives off of sugar and other yeasty foods and carbs and all that crap! So please try that at least while you are waiting to get into your dr and see how things go. good luck to you.
CommentMy problem started in May this year when I thought I was having a UTI. My test came back negative and after 3 weeks of antibiotics for treating a sinus infection and UTI (that I didn't have), I started developing vaginal pain and burning, it felt like I was being stabbed. After numerous doctors, urologist and OBGYNs telling me I did or didn't have IC, I was finally told it was Vulvodynia and treated with steriod ointments and amitriptyline which have not been successful. I have changed my diet to be free of sugars, wheat and yeast feeding foods. I have had a biopsy of my skin rash and it all came back negative for Lichen Planus, LS, and yeast and a MRI of my lower lumbar for pinched nerves since I did have a bad car wrech in April of this year and all came back good on that as well. Basically only eating meats and vegetables and drinking water. It has helped eliminate the itching some but I still have some burning and pain. I've will have been married a year in Nov. and it is discouraging being a newlywed and not being able to enjoy being married. I pray that God gets me through this and heals my body. He says "By his stripes we are healed". I know what each of you are going through with this condition and it feels as though no one has heard of it. I had thought about doing biofeedback, has anyone tried it? I have researched so much stuff about this condition and seems like everyone has responded to different treatments.
CommentMy problem started in May this year when I thought I was having a UTI. My test came back negative and after 3 weeks of antibiotics for treating a sinus infection and UTI (that I didn't have), I started developing vaginal pain and burning, it felt like I was being stabbed. After numerous doctors, urologist and OBGYNs telling me I did or didn't have IC, I was finally told it was Vulvodynia and treated with steriod ointments and amitriptyline which have not been successful. I have changed my diet to be free of sugars, wheat and yeast feeding foods. I have had a biopsy of my skin rash and it all came back negative for Lichen Planus, LS, and yeast and a MRI of my lower lumbar for pinched nerves since I did have a bad car wrech in April of this year and all came back good on that as well. Basically only eating meats and vegetables and drinking water. It has helped eliminate the itching some but I still have some burning and pain. I've will have been married a year in Nov. and it is discouraging being a newlywed and not being able to enjoy being married. I pray that God gets me through this and heals my body. He says "By his stripes we are healed". I know what each of you are going through with this condition and it feels as though no one has heard of it. I had thought about doing biofeedback, has anyone tried it? I have researched so much stuff about this condition and seems like everyone has responded to different treatments.
CommentKim, believe me I understand. There is a book called the V zone by Dr. Elizabeth Gunther Steward. You may find it helpful. The steroid creme seems to help me at this time but still have bad days. It is really a terrible condition. Also, I use A & D ointment and ABC oil by Arbon. Good luck mage
CommentTo Mage: I have used steriod ointments like Protopic and Clobetasol and I seem to be sensitive to those. I have developed a rash after using them. The OBGYN gave me Nystatin after she saw it and said it looked like a yeast rash and another OBGYN gave me several doses of Diflucan (which I cannot tell has helped) and wanted me to continue using those steriod ointments. I have to say they do provide relief but those steriods along with causing the rash can have thinning effects on the skin. I am only 30 and have not had children yet so I really don't want to put myself at risk using something like that. I take probiotics and coconut oil just in case it is yeast and I am trying my best to starve it out, if it is yeast that is just in the tissues of the skin, although my biopsy says it wasn't. Thanks for the book info, I will look into it. Kim
CommentTo Mage: I have used steriod ointments like Protopic and Clobetasol and I seem to be sensitive to those. I have developed a rash after using them. The OBGYN gave me Nystatin after she saw it and said it looked like a yeast rash and another OBGYN gave me several doses of Diflucan (which I cannot tell has helped) and wanted me to continue using those steriod ointments. I have to say they do provide relief but those steriods along with causing the rash can have thinning effects on the skin. I am only 30 and have not had children yet so I really don't want to put myself at risk using something like that. I take probiotics and coconut oil just in case it is yeast and I am trying my best to starve it out, if it is yeast that is just in the tissues of the skin, although my biopsy says it wasn't. Thanks for the book info, I will look into it. Kim
CommentKim, I am sorry you have to go thru this at an early age. I am older and have my children. How much clob. creme do you use. I have done so much research on it and I have found that using it onlya couple of days a week after getting under control will not thin the tissue. My dr. said it really isn too dangerous that way. I use it 2x a day 2 to 3 times a week and most of the time I do pretty good. Do still have some bad days though.
CommentI would appreciate a response from anyone regarding my question. My dr. told me that my V condition which consists of redness and white patches, has cleared up very well I am over 60 yrs. old but I still feel irritation. Has anyone else experience this continued irritation
CommentHi: Were you diagnosed with Lichen Sclerosis? I was and it's in remission, but I still have painful sex, irritation, etc. b/c of Vulvar Vestibulitis. I"m 59.
CommentHelloSue, yes I think it was LS as she put it and a little atroph. Th dr. said there is no sign of the condtion and it has been that way for the past 6 or 7 months. Dr. said the irritation is now an age factor. I havent had sex in a very long time. Do you get the irritation still and from sitting. I appreciate your responseto me
CommentYes, I still get irritation from sitting too. It's very frustrating. Do you use Clobetasol ointment? I use it once a week to make sure the L.S. doesn't return. I also use Estrace cream and take Aveeno baths for burning, itching, irritaiton. Also, emu oil or vitamin e oil is very soothing.
CommentFOR Sue, Dr. tired a lower potent steriod first but then gave me the one you mentioned (spellin). I am so afraid to use the estrace because of the side effects. It scares me to death so I havent applied it yet. So, we both seem to be in remission so why do you think we still burn and get irritated. I I thought I needed to see another type of dr. You dont know how mcuh better my mind is since your response,
CommentI don't think Drs. know what causes our pain and irritation any more than we do. Maybe it's hormonal. We're both postmenopausal. My levels are low. Some women have good luck with Testosterone ointment b/c it thickens the skin. I don't like using the Estrace either, but I need some pain relief or I'll lose my mind.
CommentSUE HELLO AGAIN, I really agree with you on the docs. not knowing a lot. I have been researching and find bits from one dr. or another. I feel I am on the right track since I am a lot better than months ago. I did do a lot of research on my own and took the info. to my dr. I have been viewing this site for quite a long time but felt a little strange when the male person responded so often. I now see where there has not been too much lately from him so I thought - give a try. I am so glad I did. I appreciate your responding to me. Hope to hear from you again.
CommentTo Withheld: I've been reading and posting here since Guestbook Thirteen, and I think I've been more of a help than a hindrance. Over the years I offered shared advice to many women who did not get a response and while I obviously crossed the line recently with my personal hurt, I did apologize. I thinks it's unfortunate that the fact a "male" is posting here would make you uncomfortable. This mystery illness know as Vulvodynia has hurt the women who suffer and the men who love and care for them. I believe in order for the suffering to someday stop and for real treatments and cures to be discovered, these very private stories of pain must reach far beyond this Guestbook. Our societal hangups prevent the exchange of such information on a more open and mature level which further prevents progress. You need not worry about me or what I think, because if I was some twisted pervert I would be frequenting a porn site, not a place where women are in pain. If I thought an apology to you would be of help I would offer it, but the problem here is not my presence. I have learned much about Vulvodynia over the years, more than I care to know about the various symptoms and the often clueless physicians ill advising their patients. I've heard of more home remedies than you could imagine, and read of many false claims of cures for all! I strongly suggest you be more concerned about your doctor and how he or she is treating you as a person and patient. I understand the mistrust of males, we cause a lot of hurt, but in this instance you are wrong. Lastly, from my years of reading and posting here I can say with confidence that many women who do not suffer this illness are unsupportive. I wish for a cure, for safe effective treatments, most of all I wish you all to be free from pain. Frank B.
CommentTo Frank B. I never once mentioned pervert or porn site, just that I was uncomfortable about it and I am certainly intitled to my feelings. As for my dr. I am perfectly happy with , and I don't need any apology.
CommentTo withheld: I don't mind Frank posting on this board at all. In fact, I wish my husband would do so, but that will never happen. I appreciate the male perspective and the fact that Frank has tried to help many women who post here. To Frank: I hope you'll keep posting here regardless of what one person has posted about you.
CommentSUE, please check a few weeks back and you will see that another site member spoke out about it. All I said was I felt strange about it. I did not attack anyone. His info is helpful for sure but I agree with the other site member and I am sure he will continue to post. After finally deciding to post on this site you helped me a lot in a short time. I should have went with my instincts and not posted. I have nothing else to say on this subject or this site.
CommentTo Witheld, Sue, and All: Withheld, you are certainly entitled to your opinions and feelings, this illness involves very personal, private and at times embarassing information. Please try and appreciate that male doctors and not the only males who can view such things as clinical as opposed to sexual. I honestly believe that while you may feel ill at ease, it would be more helpful to you and others to rise above those feelings. We, (men and women) are in this together, this life, this illness. I could post under a woman's name but while that may make you more at ease, it would be a lie and for all we know there are many men reading these posts. I think it's unfortunate that you would choose to leave here and not post because myself or some other man may read or post here, think of the many women you might help by either sharing your experience or offering words of support or comfort. I never wanted to insult, offend or drive anyone away from this place and I hope you will reconsider. Rise above any personal fears or hangups for the bigger good. Sue, thank you so much for your words of support and encouragement. I'm sure your husband is a good guy, I'm just trying to stay aware of possible News, offer some help here and there see what's going on, not so much for my wife anymore but for my daughters who should not have to suffer if this illness gets the proper attention and research. I will keep posting from time to time and remind readers that Estrace which is so freely prescribed, can have serious side effects. Doctors rarely test for Estrogen deficiency, but are quick to prescribe the Estrace because that is all they seem to think will thicken the thinning skin. My wife was lucky survive her battle with Breast Cancer last year. She had Estrogen sensitive Cancer, and I'm sure the Estrace did not help matters. I wrote to the Oprah show again in hopes that they will do another show on Vulvodynia and maybe include some husbands. I wish some of the famous women who are suffering from this would step forward and help, I wish the many better educated, better spoken women who suffer would find a way to make their case to the bigger audience and step up research. Vulvodynia is one illness and group of symptoms impacting women with pain and sexual problems, but there are many more. Keeping quiet, suffering in silence will accomplish nothing towards a cure or proper treatments in my opinion. Our privacy and shyness give disease the upper hand, prevent early detection and treatment in many cases, and in the matter of Vulvodynia, keep it hidden away on places like this where few will ever see. I don't want to be part of the problem, join me in being part of the solution, YOU can certainly do more than me. Thank you.
CommentTo Frank: I would just like to say that I find it encouraging that you have deep concern for your family's health as well as other people who are suffering from vulvodynia. I also would just like to add that some of the posts I have read from you are very informative.
CommentTo Kim: I thank you for your comments and I'm glad if something I wrote was of help. I've messed up on occassion and it's important to double check anything anyone posts regarding treatments or medicines. I don't want "Witheld" or anyone else to think I don't respect her feelings, I just don't think it helps to keep men apart from this site, these issues or the whole Vulvodynia problem. I did apologize for sharing my personal frustrations and I believe it was accepted, I just hope I did not cause too much emotional pain. My marriage is not without problems, but my wife and I stay caring, loving and dedicated. I'm sorry to say I think struggles with health and money can sometimes bring couples closer together, it would be nice if all marriages could survive without the difficulties. I know more and more women will be finding this site, reading silently and maybe posting to share or get some information, they need support. I agree that this is not the place for me to unload my problems and I will keep that in mind. Thanks again for the kind words.
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CommentTo Frank: First I must clear up one thing in sue;s support of you which, is fine she states "no matter what one person posts about you" I did not post anything against you, I did not attack you for your feelings,postings or anything. I only stated to her, by the way, that I felt strange about it. I felt strange about it not you being strange or anything else. I come ffrom a small town, and I will admit small minded people see things and feel about things the way I do. I never said you shouldn't post your feelings no matter what they are. Your information is helpful as I can see. My position on this is simply my being an older women and simply stated to Sue in my post to her I FELT STRANGE NOT YOU. I know you will continue to help women. I will try to find another site because I need information, and encouragement and not to be misunderstood. I NEVER ACCUSED YOU OF ANYTHING. I hope that is now clear to you and Sue.I pray for good health for everyone. There will be no more mention of this unfortunate misunderstanding.
CommentWithheld, you have your reasons for feeiling ill at ease when posting here with a man present, I get that, I understand that, and I appreciate that it is nothing personal against me. That said, could we both agree that this is a very good site for this matter and since you are already here, why not find a way to stay? If we both have a legitimate right and purpose for being here, then it's a matter of working out a way to make you feel at ease. I can and will promise to not read and or respond to any of your posts, I am an honorable man and wish to have you believe me rather than leave this site. Please consider that neither of us are here to cause harm and as reasonable adults we should be able to work this out. Please stay, and get from here what you need, allow me to offer support to others and answer their questions when no one else is around or if it is something specific to my wife's situation. I'm no youngster myself, being retired allows me time to straighten up around the house, prepare meals for my wife and daughter still at home and do other things among which is pop in here from time to time. The fact that I'm here may seem odd, but I do have good reasons which you seem to acknowledge. Stay, I won't be a bother. Thanks
CommentTO Frank B I am new here and have only posted a few times. First I want to say it really doesnt bother me if a male posts here, having said that I feel that a little suuport should be shown to Witheld also. I don't think she was saying anything negative about you. She just has old fashion feeling about stuff like this as Inam over60 years old also. She probably needs help like the rest of us and it's too bad that she feels she can't post here. If she looks at this site, I want Witheld to know I for one would like to hear from her and all of us give each other understanding of feelings we have a pain we are going thru. Carol
CommentTo Carol: I'm glad my presence does not bother you , and I think Witheld should get a lot of support after all she is the one looking for help. I hope my previous post is accepted because I really don't want either of us to leave. Thanks
CommentTO FRANK, I am relatively new to this site and must say I am so happy I found it. I must admit that I must agree with "Withheld". I was taken aback by some of your descriptive language. I don't feel that is necessary. I think we all know that we are suffering from vulva problems of some kind and I am only speaking for myself when I say that I am interested in the different treatments that others have tried and especially the ones that helped. I know you are a caring and compasionate husband and have learned a lot from your wife's suffering not just with vulvodynia but also her cancer. She is fortunate to have a husband like you to care for her. But I feel from my experience that if the person who posts does not have this problem themselves they don't really know what our suffering is and we all realize how frustrating it is for our partners. We don't need to hear it from someone in that situation. It just adds to our existing pain. I have acquired a lot of knowledge from you and others. Please continue to post.
CommentTo Carolyn: I'm happy to see your post and that you are supporting "Witheld", as well as encouraging me to post. I hope she decides to stay and accept my offer to ignore her posts and only comment on others if necessary. I already apologized for my personal comments and do wish it was sufficient. Please understand that I have read and posted here for years, interacting with many women and many different situations. There have been the posts having to do with yeast, bladder infections, thinning skin and some of the triggers, and there have been posts discussing sexual problems. Some women were doubting the stability of their marriage and I pointed out that a loving husband will stand by in difficult times unlike the husband of a perfectly healthy wife who will cheat regardless of their sex life. I have been here for several women who were talking suicide and did my best to offer alternatives when no one else responded to their posts. Go back to Guestbook Thirteen and read over the years till the present time, the advice, the emotions, the ups and downs, take it all in and decide if you feel the same way as you do from reading a few days, weeks or months on this site. I respect the ladies who are old fashioned and either shocked by the presence of a man or ill at ease discussing their problems in my or any other man's presence, But, I honestly think for the greater good, for this illness to get the attention it deserves in order to get funding and research, more men need to be aware and involved. We need to set aside our old ways of thinking and reach out to educate those who are in the dark, who giggle at the mention of the word "Vulvodynia" because they don't understand the suffering. I have written to the Oprah show several times over the years in an effort to give Vulvodynia national coverage. Let the public hear about the physical pain and the emotional pain of the women who suffer and the emotional pain of the men who love them. We live in a sexually immature and sexist society, people cringe at the mention of female genitalia but listen through hours of commercials about erectile dysfunction. If this issue of me psoting here was just about me, I would have been gone years ago. I have daughters and I don't see why they should suffer the same fate just because this is too sensitive to oenly discuss, or because it is a woman's problem and not worth the research dollars. I know when a person is suffering from chronic pain they are consummed with their own problems, unfortunately I believe this problem is growing. A few years ago if a woman described these mystery symptoms of pain to her doctor they were told it's in your head! Now most doctors know the word, because communication through the media helps. Sites like this , help not only the individual who is affected but the friends and family who want to help. I'm a supoortive husband and I'm also a passionate man, this does not make me a cheat, or a guy who is preoccupied with sexual thoughts. I shared some of my frustration here and I agree in hindsight it was wrong, but don't dismiss the bigger picture, don't try and keep this issue neat and clean from occassional emotional pain because if you do the world will ignore it along with any hope of resolve. The women of the future, my daughters included deserve more than silence.
CommentFo Frank B, Witheld, Carol and Carolyn. I, like Carol, have just found this site and I have been following what has been going on. Let me first say, what I discovered by going over and over these post, on Sept. 20, 09 and site member, Miriam posted her concerns. She has every right to those feelings as did Witheld. No one attacked her and no one should. I don't quite understand why, Witheld got such aa terrible post from Frank simply because she told site member Sue she felt a little Strange. She never said for Frank not to post again or even that she didnt want him to post to her. SHe just said she felt a little strange about it. I agree with Carol and Carolyn but for me I will try another site because I want to be free to say what is really on my mind. Frank, Im sure you have helped many women and I know your help is needed It's just a shame that this had to happen. TO MIRIAM, I only saw one more post from you and I did see another member XXXXXXXshowed a lot of concern for you. I hope you are feeling a little better about everything and I truly understand your feelings. Good Luck to all and Frank and his wife Thank You
CommentTo Mage: When I read Witheld write that how she felt about a "male" responding so often and how she was "going to give it a try" because he was not present, I felt hurt and believed it was necessary to explain my presence. Why leave for another site? Why all the upset instead of understanding? I am disappointed that Witheld, you or other ladies would choose to try and find another site where there may be more unknowns, than stay here and discuss things such as me or other men posting or being involved. I am honest with who I am and truthful if I say I will respect the privacy of anyone who does not want my comments to their posts. How can that be a bad thing? My recent posts explain how I feel about men and women working together and what I believe to be social problems associated with this very personal and private illness. Excluding male participation, feeling strange or being creeped out by men being involved here, can't possible lead to breakthroughs, understanding or education. The choice is yours to leave, I wish you would all stay and work with me to grow our knowledge and help others who may visit this site. Change is a necessary part of making for a better future. I strive to be different than men of the past, to go against basic instincts, fears and prejudice. Illness that hurts my wife and could hurt my daughters is not exculsively a female thing in my opinion. Sorry some of you feel that way.
CommentSuch a shame for everybody!
CommentSuch a shame for everybody!
CommentI feel that Vulvodynia (or what my husband and I call "V" for vamoose) has taken away my identity. I used to be a jeans girl. Now I can't wear jeans or any kind of pants without extreme pain. The last time I wore jeans was in 2005. I think I look ridiculous wearing skirts (or dresses) all of the time, but I have no choice. And I am just so tense all the time. It is impossible to relax when you are in so much pain. I know this is not news to anyone who has V, but I feel the need to vent. I want my pain free live back. (And I also have Multiple Sclerosis. The fun just never ends).
CommentI feel that Vulvodynia (or what my husband and I call "V" for vamoose) has taken away my identity. I used to be a jeans girl. Now I can't wear jeans or any kind of pants without extreme pain. The last time I wore jeans was in 2005. I think I look ridiculous wearing skirts (or dresses) all of the time, but I have no choice. And I am just so tense all the time. It is impossible to relax when you are in so much pain. I know this is not news to anyone who has V, but I feel the need to vent. I want my pain free live back. (And I also have Multiple Sclerosis. The fun just never ends).
CommentThank you XXXXXXXX for your concern. I'm sorry that I havent been here for a while- i didn't mean to worry anyone. I'm not brave enough to kill myself, so it won't happen. Just trying to figure out a way to live with this- am super gun-shy about dating again. I've found too many insensitive men out there, and am feeling discouraged and hopeless. This condition has done a psychological number on me and I've lost my faith in ppl... as the love of my life disappeared with the onset of this condition- he was sympathetic at first, but then it all changed. I feel soo hopeless... Are there any decent guys out there? This is soo disheartening :( I need hope- I just feel like no one understands that this is a MEDICAL PAIN DISORDER- we are not frigid or whatever... I'm with FRANK- let's get this disorder out of the closet and out into the public eye- Part of the reason ppl are not empathic to our pain is because this disorder is not widely publicized! I'm soo frustrated and angry, I could scream- Friggin media! Shame on the media for depicting sex as something easy and wonderful and anyone with problems as cold and frigid! SHAME ON THEM! This has to stop- too many women in pain (what is it- 18 percent of the population with this problem)... I want to scream from the rooftops- anyone wanna join me?
CommentTO MIRIUM FROM XXXXYeah! glad your back. I would love to join you --- I am sorry about your relationship. That stinks but I feel you will find someone better. This condition is terrible. I have the V under some control but now it hurts along side the V before you get to your butt. I am so angry also I don't know what to do about that. I am glad you sound sooo much better. If anyone out there is having pain where I jsut mentioned please let me know
CommentGellexi- I hear ya about not being able to wear pants! I'm the same way- skirts and dressed with nothing underneath- everyday! underwear hurts me too! well, I'm in a venting mood so that's that! This thing is soooo frustrating... I bet there's some simple way to cure this thing- there has to be - especially V V - it's such a tiny area that wreaks so much havoc on our lives. Someone on here once said that if this were a guy's problem, there would be a ton of research done and the cure would have been found already... I feel like I've got a whole pharmacy of meds in my house- could rattle off the names of any meds for this condition and there side effects- geeeeeeez maybe i should become a pharmacist... well, i'm praying for you all! something has to work for us- it has to!
CommentIm in a ventging mood also. I tried to find an e mail to contact Oprah but I can't seem to get it right. Im not good with all that. I wish would get involved maybe donate some money to help find a cure. I feel there has to be a simple way also but what it is no one can seem to come up with. I read in the V book that skin conditions never clear up completely. Really great right but they can find a way for a man to keep a 4 hour erection with medication. UGG
CommentHello again, there is a way to go onto a chat room on this site. Does anyone know how to do it?
CommentTo Miriam: I enjoyed your post on Oct. 2, I totally agree! Regarding e-mail to Oprah, I've used the link from her oprah.com to contact about an idea for a show. I have written several times over the last few years. She has done a show with the mention of "Vulvodynia" but it seems that she is very ill at ease with this subject. My observation on this site and from talking to other people is that no one wants to talk about an illness which involves pain of the genital area. Socially it's still difficult to have an adult conversation and use words that include the female genitalia, many people cringe or like Oprah start to giggle like children. This whole thing is an uphill battle both with the public to get support and understanding, and with the medical community. Only a few years ago doctors were telling women, "The pain is in your head", because they did not know enough about the illness. When my wife's gyn of many years could not "Fix" her recurrent tear and thinning skin, he actually turned his back on her! I think it's human nature to shy away from people who have problems, medical/physical and otherwise. Years ago I got friendly with a woman I met at our local "Y" where we both exercised. She was going through a divorce and I always was will ing to listen to her events and problems. I was shocked one day when one of her friends who was next to me on a treadmill expressed how she didn't want to hear anymore about this ladie's problems. There are people who act as if they can catch a divorce or vulvodynia if they spend too much time talking about it, so they shy away. Most people are concerned with their own little world, don't want to risk disturbing the balance, don't want to think bad things can happen like vulvodynia. I'm no expert on the human condition, but I feel confident that it will take strong, intelligent, angry and vocal women and men to get this illness the attention necessary to make a difference.
CommentHELP!!! I have so many questions. V seems to be a very complicated disease and unique with each person. I had all my hormone levels tested and they were all low. My first obg said I had atrophi vaginitis. I used health store progesterone for several years and it seemed to help. One nite after taking a bath I got this terrible burning in the V area. I was out of my mind. I didn't know what to do after trying so many different things I found vitamin E suppositories that I used only at nite. It would stop the burning but next morning back with the burn. It was horrible to work. I went back to same obg and she gave me premarin creme to apply locally. It seemed to be helping 3 weeks on one week off. After the one week off I began to spot. I went back and did a horrible edom. biopsy just to be sure it was the creme and thank God it was. I started to research and found several sites that said to use a steroid creme. I went to another obg and she said I had Lich. something or other and gave me testosterone which helped also but I started to get like a male. I was so disgusted I researched the net again and found that dermatologist can help. I spoke with mine he examined me and said the same (lich. something.) He kept me on the steroid creme and now I only use it 2x a day every 8 or 9 days and use Estrace creme 2x a day every 8 or 9 days. I feel it is under control but I do get som problem with the folds in my right side. My first question is: Anyone using estrace did they ever spot? And why would I be getting inflamation in the folds of my upper leg. The derm said there is no diseased skin ther? ANyone who can help with this would be greatly appreciated, I am sorry for going on and on
CommentTo XXXXXXXXXXX: Thanks again for your kind words. Somehow a broken heart and a broken vestibule have been especially difficult to deal with... it's been awful :(. And he's been awful too-unbelievable! From the most compassionate guy I've ever met turned into something unrecognizeable...SHAME ON HIM! Anyway, sorry to hear you are having trouble in that area XXXXXXX- idk what if could be- what kind of treatment are you currently using? I was using a compounded estrogen/test ointment at one time and it gave me itching in that area... to the gal who is having spotting with estrace- perhaps you are using too high a dose? idk... i didnt have any problem with the est. except for itching and it did nothing to help V to Frank and all- we really need to organize. I've done activist work in the past for other stuff. We should all pick a day and FLOOD Oprah with emails... and yes Frank what you said here is soo right: we need "strong, intelligent, angry and vocal women and men to get this illness the attention necessary to make a difference. " I am to the point where I'm telling all my friends and family about this. And I've had two very good friends (whom I've known for years) back away. Very weird. My male friends seem more empathic than the female friends. It's like some ppl don't believe that this condition is real! OMG! We need to wake ppl up! No one should have to suffer in silence because of ignorant doctors, partners, friends, etc. Well... that's the rant for today. off to take more mind altering new meds for treatment number 678 or whatever- i've lost track! Well, Frank- I'm angry and vocal and smart right now lol sooo I'm ready to organize... and yes, XXXXXXXX it is absolutely ridiculous those ads for ED in men--- I mean what kind of world is this where impotence is considered ten times more important than V- women are expected to endure pain- since i've had this problem, i had a friend admit to me that sex has always been terribly painful but she has never told anyone even her husband for fear that he'd leave. So, she endures it and literally has bitten her tongue at times during the act cause it hurt so incredibly much. OMG! that's awful! This disorder has to come out of the proverbial closet- it must!
CommentMIRIAM---I love e mail idea to Oprah. How can we get organized to do it. Frank, I thing you said you had a link for Oprah. What could it hurt. Miriam you asked what I use and I use steroid creme and estrace 2x a week I dont;t spot from the estrace but I did from the premarin like KATjust stated. Today has not been a bad day at all. The V is under control and my derm. said at this time the white patches are gone but I get pain along side the V as if it's saying No i won't let go. Last year I couldn't wear underwear even at work. So I guess I should be greatful for less pain? I am in some way but i dont think we should have to suffer with this crap at all. Lets get a buch to agree to make some type of noise about this.
CommentTo All: The only way I have e-mailed Oprah, is through her "oprah.com" link. Once there scroll down to contact and there will be a place to "contact with an idea for a show", something like that is how I have made my pleas. Try and not get disappointed if the mail blitz doesn't work. Oprah has millions of viewers who tune in to hear and watch people like dr. berman talk about spicy sexual things and Vulvodynia is a tough sell. Even if you can't make big changes, you can stay positive and let your doctor, friends and family know you are having a tuff time. People need to know such things exist if they are to understand and be of help. Look at all the support, funding and research for Breast Cancer, that took years! Imagine if it was not discussed and understood? Good luck and stay strong.
CommentI posted on 10/3/09 can someone who has been going thru this respond to me PLEASE!!!
CommentHi Kat: I'm sorry no one has responded to you and for all the problems and pain. I was diagnosed with Lichen Sclerosis about 28 years ago after a biopsy. Speaking of Testosterone's side effects, I was prescribed that for the L.S. and it thinned my hair so badly that I'm practically bald, I haven't used it in years, but use Estrace cream now. It doesn't make me spot, but then again, I had a hysterectomy when I was 40. I use Clobetasol once weekly to keep the L.S. in remission, but I still have burning, itching, irritation, aching from Vulvar Vestibulitis. I'm not sure what the inflammation in the folds of your legs are. Could it be from your thighs rubbing together when you walk? I get that sometimes. I hope all of us will be painfree one day.,
CommentTO SUE FROM KAT thank you so much for your response. That sounds like the same diag. my dr. gave me. I still have my ovaries and everything. I use the estrace creme 2xa day for 2 days and the steroid the same amount. I have been using the estrace for several months and thank god no spotting. I did spot on the premarin 3wks on one wk off. Dr told me at my last visit that the white patches are gone and my V anatomy was very good. He feels that the irriation I get now is just age related. You maybe right about the rubbing because dr. said there is nothing there. I am trying over the counter cortisone when that happens. Please! any other information you can help me with would SO be appreciated. I feel like we may have the same type of problem and don't feel so scared and alone. THANK YOU
CommentHi Kat: I was still hurting today, so I put on some Clobetasol ointment and now my vulva feels so much better. Have you tried taking Aveeno baths? They're very soothing and relieve itching and burning. I think I've been dealing with this crap longer than anyone else on this site and I'm sick of thinking about it and not being able to have a sex life with my husband without severe pain during penetration and afterwards. Oh, and emu oil or vitamin e oil relieve dryness for me. I can't think of anything else to tell you. Hope something I suggested helps.
CommentSUE, thanks again yes this info helps me also. I will look for aveno and vitamin e. You have been using the clobetasol and estrace for 28 years?
CommentNo, I started using the Estrace cream after many years of using the Testosterone ointment. But, I have been taking Aveeno baths for a long time.
CommentA broken heart and a broken vestibule... just one of these is enough... but both? It's been a year and sometimes I just don't know how I've made it through the days... If only this disorder was publicized, we wouldnt have to feel like "freaks" explaining it to everyone, especially while dating... this is just too hard... do you think any man can really understand this kind of psychological and mental torment? or even women who don't have this condition? can they understand or empathize?
CommentTo Miriam: I don't you if you were just venting or really wanted an answer? I'm just full of thoughts on the subject, just say the word. As the Father of daughters, I feel sorry for your heartbreak. Hopefully time will ease that pain.
CommentI get 0 sympathy from my family. They change the subject if I ever bring it up. I have several friends with Vulvodynia, so of course they're sympathetic to me. My other friends try to be, but they don't have a clue what we're dealing with. My husband doesn't quite get it either, even though he tries. Every damn time I have a flareup, I think it's going to stick around and give me 24/7 burning, like I used to have.
CommentFirst to SUE, My husband trys to understand but he does forget if I DONT complain. Then I ask him "do you remember how much pain you were in with your hemroids?" To MIRIAM I only wish there was a way to get this out there, like on the show THE DOCTORS or OPRAH instead of talking crap about sex, weight, cheating just crap. As far as your heartbreak I am so sorry about that but HE is the one with a disease.
CommentLooks like I'm gonna stick my neck in the noose, but I'd like to give some male input here. Yes, you ladies are the one's with the pain, but being the man who is married and loves a Vulvodynia sufferer let me say it is a balancing act to emotionally,physically and sexually hold up my end of the marriage. To Miriam, men come in all sizes, shapes and sex drives. The trick for a sufferer of this illness is to find a good guy who is not very sexually active or intersted. Some guys love the companionship and closeness of a woman, are not Gay, just not very sexual. Unfortunately, I am a passonate, sexual man and it's tough. I do my best to keep in my mind how my wife tears and gets irritated with or without sex, but still it is impossible to maintain that mindset when my own body and mind are craving passion. I avoid physical contact with other women, I don't need to kiss our female friends hello and I never went in for that touchy feely flirting stuff! I avoid the beach, no need to have near naked women in bikinis in my face, but to function in our society without the constant reminder of sex is nearly impossible. I'm retired and home alone all day (one of the reasons I have time to be here, sorry) I need exercise and some contact with people or I get really depressed. Going to the gym is a double edged sword, I need the workout, enjoy the people time, but hate to be around friendly, shapely women. I'm not going to do anything and I'm not even tempted because I know better than to cause such hurt, still it's upsetting. Lovemaking is a real balancing act because I need a certain frequency to stay in touch with my libido and there is no way my wife and I can come close to a rythm. The physical interaction is another difficult time, very limited to positions and positionaing and level of passion in order to not cause damage. I'm sure I sound like I'm complaining when I'm really trying to communicate how difficult it is to accomplish that behavior. My wife has had breast surgery (lumpectomy) and I must be careful to avoid any pressure on her breast in additon to the aforementioned. The medications she takes tamoxifen and lipitor dull her sensation to orgasm and magnify her Vulvodynia symptoms. Male sexuality goes through phases, wild and strong when we are young, measured and fading as we grow old with everything else in between . I don't love my wife any less becaue of this illness, I just find it very difficult to achieve a workable behavior and routine. I think by nature men are not monogamous, marriage and society challenge us to be otherwise. Those of us who honor our vows and love our wives remain faithful regardless of Vulvodynia, for the others all the healthy, passionate, painfree sex is not enough to satisfy the desire for someone different. You just need to believe love is more than sex, and some men are capable of caring and self control. Hope my honesty was not too disturbing.
CommentHas anyone read that lack of vitamin b12 can contribute to V burning?
CommentI have been having skin problems. Im getting a tear with penetration at the bottom opening. Any advise?
CommentI have been having skin problems. Im getting a tear with penetration at the bottom opening. Any advise?
CommentTo Anna: My wife has had a problem with recurrent tear due to thinning skin at the six o'clock position for many years. Unless you have a Estrogen deficiency, something such as Estrace cream will not be of help. If the problem is due to Lichen's Sclerosis, Clobesterol ointment can offer some relief. Unfortunately the cause of thinning skin and tearing has not been discovered and that is why Vulvodynia remains a mystery illness. Using a water based lubricant prior to intercourse may help a bit but the skin is often very fragile, so certain positions need to be avoided and the activity level needs to be reduced to prevent further trauma. I hope this response is of some help and that my being a man did not shock or offend you. Best of luck .
CommentI was hoping for some type of response about low count of B12 contributing to burning. ANybody?
CommentI was hoping for some type of response about low count of B12 contributing to burning. ANybody?
CommentTo Kat: In all the time I've been reading this site, I never heard about Vitamin B-12 deficiency contributing to burning. Many women believe there is a connection between high oxalate diets and burning. One word of caution if you decide to supplement with Vitamin B-12, B vitamins should be taken as a B- complex to avoid upsetting the B vitamin balance in the body. In other words try a B-25 complex supplement, you will get a wide array of B vitamins including the B-12. Keep your water/fluid intake up there so your urine is not highly concentrated, and take vitamins with food, not on an empty stomach. Hope this is of some help, good luck.
CommentFrank, Thanks for the response. The reason I had this question is I had my yearly physical and my PCP said my b12 dropped from 295 to 256 so she gave me a b12 injection with 2 to follow in the next2 months. When I looked up B12 on the net there was mention of burning when there is a lack of it. I was hoping I may see a difference in the irritation.
CommentTo Katn: You're welcome. I believe there are only a few situations by which you can become deficient in B-12, pernicious anemia(spelling) in which your body can't absorb it, strict vegitarian diet (B-12 found in red meat), are a couple. No harm in trying the supplement, B Vitamins are water soluble so any excess is excrreted in the urine. I've read that some women swear eating high oxalate foods, or drinking wine causes burning. Still a mystery for many. Good luck.
Commentthank you to the gal that said HE has a disease -referring to my ex bf... sigh... and yes, i found that post disturbing about a male's perspective on this :( i have a normal to high libido in general, but this v v pain throws any libido out the window and replaces it with extreme FEAR... fear of pain, fear that the guy will leave, fear that i will end up alone unless i silently endure the pain and cry in the bathroom alone afterwards the EMOTIONAL PAIN is a million times worse for me than the physical pain- since the pain is only with contact... i just ordered a book from Amazon about the impact of female pelvic pain on relationships... as someone said on here- only other sufferers can really GET it... i have friends that don't want to hear about this and don't understand at all- and shockingly these are my female friends... male friends seem to understand- one told me he was in tears when he read about this disorder. another told me something similar... if this was on tv, it would help... ads for cymbalta for vulvodynia... it's very frustrating and isolating when ppl don't understand... sigh :( how i make it through the days i dont know... maybe i should quit reading this site like that other gal... maybe she's right about men posting here... feeling hopeless again... how would i describe the pain? it feels like sandpaper on an open wound like you're being ripped apart like a hot poker is being shoved inside you like glass shards are piercing your body and you can't them out... ARE those descriptions graphic enough to get those insensitive family and friends to understand... i am working on an open letter to oprah, cosmopolitan, and other women's magazines... i was going to include those 4 graphic descriptions... any input would be appreciated.? my mission right now is to work my damndest to get this out in the public eye- i will be volunteering for the NVA soon... i WANT US ALL TO BE UNDERSTOOD... we all deserve a medal for being so brave and trying to live through this horrible thing!
CommentTo Miriam: I'm sorry you found the "male" perspective disturbing, I wish my experience suggested other results. There is a difference between desire and ability, and accpting that unpleasant reality helps in getting on with life. You have a normal to high libido, but also realize the pain involved with attempting to satisfy that desire. That's all I was suggesting when I talked about finding a caring, loving man who was not overly sexual. we can't have it all because of this illness, not the women or men who have that desire. Hopefully for some the answers will be forth comming and they will be able to resume whatever activity they so choose. Life is about compromise and finding a way to function with our limitations and those of the people we love. I have a strong desire to eat fruits and vegetables, just the thought of these foods makes my mouth water! Unfortunately, because of intestinal adhesions (scare tissue) I could die or require emergency surgery if I eat even a small handful of grapes, cherries or many other fruits or vegetables. There is no treatment, cure and as I'm aware research to change my situation. I'm just trying to make a point that it's good to fight for change, and raise awareness, but you need to have a plan B until things turn around. I believe in Love, and I know there are good caring men who would feel very lucky to be with some of the women here regardless of their sexual limitations due to Vulvodynia. This is not meant as an insult to your womanhood, but rather a compliment to you as a person with more to offer than sex. I'm well aware of the many marriages that fail regardless of sexual compatibility. That fact encourages me to believe therre is more to falling in love and staying in love than sex. Be encouraged that a true love is out there, be reasonable that for now sexual intimacy cannot be a major ingredient in a loving relationship. Hope I cleared things up rather than make them worse?
CommentTO MIRIUM; HI, Im the gal who said your x has a disease and not you. I am sorry that you are back in that dark hole again. I am there quite a bit of the time also. What kind of medication do you use? I purchased the V book by Elizabet G Stewart and found that the medications I use are also what she advises. I don't know what your diag. is but I am sure you will find some help in this book. Yes, it is too bad we lost a few site members but I pray they find a site that will help them. Please try to stay focused and I will remember you in my prayers. I just want to say that acording to this book and net research there is no cure for skin conditions. That makes me cry but it also at times helps me to put things in perspective.
CommentDr. Glazer- are you there? this is not a safe place for women anymore... yes frank, you're right about the noose... "The trick for a sufferer of this illness is to find a good guy who is not very sexually active or intersted." that statement confirms that i should use the noose to hang myself... Yes, I was up all night crying because of your post... Please STop- PLEASE I shouldnt be reading here... why did i read that? why? i'm not a person with a low libido- i'm normal as far as libido is concerned. i don't want a man who's not interested in sex. I just can't deal with the pain that feels like sandpaper on an open wound. oh eff this... why should i have to explain myself to him? I DONT FEEL SAFE HERE ANYMORE... I was looking for a support group - not a confirmation of my fears... where's that noose, Dr. Glazer? Isn't hanging oneself a good option to rid oneself of this pain?
CommentMiriam, what the hell is your problem? Leave Frank alone. A lot of us women want him to post here. If you dont like what he says, go elsewhere and stop causing problems!!!!!
CommentAND A LOT OF US DON'T. Miriam is obviously very upset. Maybe you have forgotten what thats like. She should just not read any postings she doesnt want and stay here so she can get some help. Your remark to Miriam was terrible.
Commentyou are all brave warriors... stay strong and don't let anyone bring you down!
CommentTo xxxxxxxx who said to Miriam "what's your problem," HELLO she wouldn't be on this site if she didn't have a PROBLEM now would she. Im sure we could count on YOU for compasion!!!!!
CommentWhy doesn't everyone let Miriam alone. This cat fighting over a male poster is nuts. Let the two of them take care of this situation. Miriam just ignore any site postings and find some positive help you are comfortable with. You are obviously very upset and need some comforting not people yelling at you.
CommentTo Miriam & All: It was never my intention to cause harm on this site where women are in pain. My attempts at honesty and encouragement and information sharing have failed if even one woman is left more upset than comforted. This will be my last post and I shall close this chapter of my life. I hope Miriam will stay here, stay stay strong and forge ahead to spread the word. I hope advancements are made in both Vulvodynia and Cancer research, because some of the current treatments of this illness may have serious side effects. Please don't argue or insult eachother over my leaving, stick together and support eachother. I wish you all pain free days and love. Frank B.
CommentTO MIRIUM, I am your side. I have been suffering for many years and have received a lot of good information on this website. I must say Frank's posts make me a little uncomfortable. I sometimes think from his descriptions of the female genetalia that maybe he is an OBGyne. I have a wonderful and understanding husband but when he is in the mood if he doesn't get sex he is moody although he pretends not to be. It's a natural instinct in men so I often suffer through more pain for a few days afterwards. Men are sextual creatures and I would like Frank to tell us if we should advertise on Craig's List for a man that is not interested in sex. I think he would have a bigger problem. The women suffering on this site are looking for a cure for vulvodynia or at least to know that research is being done on the problem. We shouldn't have to compromise as Frank suggests. I get uncomfortable because he seems to be ready to respond so fast to posts. Maybe if a few more husbands posted we would not feel that way. Unless a man suffers with our pain they just don't understand what we are going through. We don't want to hear about his frustrations. We already feel bad that our partner don't get sex every time he wants it. Why compound our agony. We just want to hear about treatments that have helped others. I feel that this is what this website is designed to do. I don't want Frank to stop posting but I for one don't want to hear about the six o'clock position or any other position. You can call me old fashioned but I consider myself a 30 year old conservative CPA. This is just my opinion and I know probably most of you won't agree with me. I think I am done venting. THANKS
CommentTO MIRIUM, I am your side. I have been suffering for many years and have received a lot of good information on this website. I must say Frank's posts make me a little uncomfortable. I sometimes think from his descriptions of the female genetalia that maybe he is an OBGyne. I have a wonderful and understanding husband but when he is in the mood if he doesn't get sex he is moody although he pretends not to be. It's a natural instinct in men so I often suffer through more pain for a few days afterwards. Men are sextual creatures and I would like Frank to tell us if we should advertise on Craig's List for a man that is not interested in sex. I think he would have a bigger problem. The women suffering on this site are looking for a cure for vulvodynia or at least to know that research is being done on the problem. We shouldn't have to compromise as Frank suggests. I get uncomfortable because he seems to be ready to respond so fast to posts. Maybe if a few more husbands posted we would not feel that way. Unless a man suffers with our pain they just don't understand what we are going through. We don't want to hear about his frustrations. We already feel bad that our partner don't get sex every time he wants it. Why compound our agony. We just want to hear about treatments that have helped others. I feel that this is what this website is designed to do. I don't want Frank to stop posting but I for one don't want to hear about the six o'clock position or any other position. You can call me old fashioned but I consider myself a 30 year old conservative CPA. This is just my opinion and I know probably most of you won't agree with me. I think I am done venting. THANKS
CommentTo MIRIAM,AND CAROLYN and any one else who wants to leave this site. Please don't make the same mistake I did. HERE is what happened to me. About a year ago I started with this burning. I went from one doctor to another and then found this site. A member on this site responded to me and gave me some great advice and support. Getting this condition under control takes a long long time. The two of us e mailed privately which helped so much because I did not feel so alone and without a friend to listen. One day I was really out of control and e mailed a list of questions I wanted the person to answer for me. Any fellow sufferer could tell by my e mail that I was over the edge. The member never answered that e mail of questions. I sent several private e mails trying to find out what I did to make the member not respond and I never heard back. I was devastated and stopped posting here. I tried again not long ago but I stopped and was just about to delete this site from my computer and decided to take one last look. PLEASE dont give up on this site. Give yourself a chance to find someone who can give you ideas and support. It is too late for me here so I will not be posting again. GOOD LUCK
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CommentLooking through these posts, I've learned about several ways of treating vulvodynia (I have dysesthetic) that I have not tried. I started taking probiotics a few weeks ago, and I've also started taking caprylic acid, and applying calendula gel.
CommentLooking through these posts, I've learned about several ways of treating vulvodynia (I have dysesthetic) that I have not tried. I started taking probiotics a few weeks ago, and I've also started taking caprylic acid, and applying calendula gel.
CommentLooking through these posts, I've learned about several ways of treating vulvodynia (I have dysesthetic) that I have not tried. I started taking probiotics a few weeks ago, and I've also started taking caprylic acid, and applying calendula gel.
CommentLooking through these posts, I've learned about several ways of treating vulvodynia (I have dysesthetic) that I have not tried. I started taking probiotics a few weeks ago, and I've also started taking caprylic acid, and applying calendula gel.
CommentGellexie, what type of pain is that and where do you get the pain.
CommentI have general vulvodynia. The pain is pretty much everywhere "down there". And it's constant. I don't have itching like a lot of those with V. And I would not describe the pain as sharp or shooting. As someone else said it is very much like having an open wound and scrubbing it with sandpaper. There is no let up. I'm also trying a gluten-free diet with low oxalates. And I have been a vegetarian for thirty years (but I do eat dairy). My question (which for some reason didn't show on my previous comments), is how much caprylic acid I should be taking and what about probiotics? And I wonder if canendula gel really helps control the pain. So far is hasn't.
CommentI have general vulvodynia. The pain is pretty much everywhere "down there". And it's constant. I don't have itching like a lot of those with V. And I would not describe the pain as sharp or shooting. As someone else said it is very much like having an open wound and scrubbing it with sandpaper. There is no let up. I'm also trying a gluten-free diet with low oxalates. And I have been a vegetarian for thirty years (but I do eat dairy). My question (which for some reason didn't show on my previous comments), is how much caprylic acid I should be taking and what about probiotics? And I wonder if canendula gel really helps control the pain. So far is hasn't.
CommentI have general vulvodynia. The pain is pretty much everywhere "down there". And it's constant. I don't have itching like a lot of those with V. And I would not describe the pain as sharp or shooting. As someone else said it is very much like having an open wound and scrubbing it with sandpaper. There is no let up. I'm also trying a gluten-free diet with low oxalates. And I have been a vegetarian for thirty years (but I do eat dairy). My question (which for some reason didn't show on my previous comments), is how much caprylic acid I should be taking and what about probiotics? And I wonder if canendula gel really helps control the pain. So far is hasn't.
CommentTO GELEXIE, To you have pain on you Buttocks also when you sit down or is the pain only in the V area?
CommentHi Everyone -- I have contributed to this site as well as read the posts over the last two years -- I have omitted my name because I feel that everyone is really upset. We all are entitled to our feelings and no one is right or wrong. Vulvodynia is a terrible disease and unless you have gone through it whether a short or long time you really don't understand. I consider myself to be fairly educated and I am in the medical field and I will tell you that Vulvodynia is horrible. So for those of you that find solace here on this website -- wonderful!!! I am pain free for almost a year and I always wonder if it will come back -- you never really let this experience go. So ladies -- keep posting and sharing your thoughts -- until Vulvodynia becomes a household word -- outlets like this can help the masses. As far as Frank, don't think he meant any harm, but yes I too felt that he was a little overanxious to answer all these posts -- and unfortunately as sympathetic as he is some people found in inappropriate. He gave a male perspective but its not what this forum is for. So many of us have so many different symptoms, onset and things that work so we need to share this. As far as our partners, we can only hope for understanding from them -- and that is life -- when things get tough we learn alot about ourselves and those around us. Just thought I would share some objective feelings. I advise all of you to keep posting and helping each other and lets look towards our wellbeing and hopefully some day a better understanding of this disease. God Bless all of you and I pray that we can all be pain free or at least controlled some day.
CommentHi Everyone -- I have contributed to this site as well as read the posts over the last two years -- I have omitted my name because I feel that everyone is really upset. We all are entitled to our feelings and no one is right or wrong. Vulvodynia is a terrible disease and unless you have gone through it whether a short or long time you really don't understand. I consider myself to be fairly educated and I am in the medical field and I will tell you that Vulvodynia is horrible. So for those of you that find solace here on this website -- wonderful!!! I am pain free for almost a year and I always wonder if it will come back -- you never really let this experience go. So ladies -- keep posting and sharing your thoughts -- until Vulvodynia becomes a household word -- outlets like this can help the masses. As far as Frank, don't think he meant any harm, but yes I too felt that he was a little overanxious to answer all these posts -- and unfortunately as sympathetic as he is some people found in inappropriate. He gave a male perspective but its not what this forum is for. So many of us have so many different symptoms, onset and things that work so we need to share this. As far as our partners, we can only hope for understanding from them -- and that is life -- when things get tough we learn alot about ourselves and those around us. Just thought I would share some objective feelings. I advise all of you to keep posting and helping each other and lets look towards our wellbeing and hopefully some day a better understanding of this disease. God Bless all of you and I pray that we can all be pain free or at least controlled some day.
CommentTO XXXXXXX I agree with you completely all on points. I feel really bad for the member who posted on 10/9/09 to Miriam and Carolyn. She felt she had to leave the site because of another memeber, as I guess others have. I hope Miriam will come back, Is it possible for you to share your treatment and medications with us?
CommentTo Kat, the pain is pretty much from the clitoris through to the anus and everything in between.. When the pain is partic-ularly bad, there is pain in my groin area as well (like where my legs join my trunk--I think that's the groin!). Do you have any suggestions? Sitting doesn't change the location of the pain.
CommentGELEXIE; I had pretty much the same as you but now mostly mu butt when I sit. It maybe the same place as you. Have you been to a dermatologist? That is where I go now. I use 2 different medications. Are you using any prescription medication?
CommentI called my dermagologist's office. I was told they do not treat/test for vulvodynia. I need to call around. I don't take any presciptions for vulvodynia. In that past I've tried neurontin, oxycontin, oxycodone, percoset, just to name a few. I've been taking Elavil for years for insomnia, but it does not affect the V pain.
CommentGellexi, My derm. knew what I had after he examined me. He gave me the same diag. that my obg gave me. I use clobetasol and estrace. I have come a long way since last year. I am not100% but much better. I stuck with my derm. because he is closer to me and if I need him to see me because I get scared he will see me and speak to me and examine me. Some one just posted today who is in the medical field. She said she has been pain free for about a year. I hope she posts again with her treatment. Maybe you can get your dr. to perscribe the clobetosol to see if it helps. I get more problem now with the butt. I have had the groin and also my thigh burn as well.
CommentTO XXXXXXXHi, on 10/10/09 you shared a great post with us. I posted back that I agreed on every point. PLEASE share your line of treatment with us. You said you were in the medical field and understood all that is going on with us.
CommentHello everyone -- my post has some of you wondering what me treatment plan was that made me pain free. My initial symptoms started with an allergic reaction to some soap that I used. It lead to a chronic burning in the vestibule of my vagina and also in my rectum. After much searching and several months I found the right doctor in Chicago and was treated with 5% Lidocaine gel nightly on a cotton ball to desensitize the area and then I went on 4 months of Elavil which helped some of the pain but I think it helped the depression that this disease caused. I was very lucky but I know many have symptoms due to LS, low estrogen etc. Continue to search for what works for you. Good luck to all.
CommentTO XXXXXX Your response is appreciated. I have done so much research in the past 2 years---I think what you are referring to is..The lidocaine calms the nerves in the area that has been inflamed for a long time. I have LSC and the V burning is under control but I get the sensitivity on the outline of my butt cheeks. My Dr. states the LSC is under control so I have been thinking about the pain cycle theroy. Do I have it about right?
CommentTO XXXXXXX - I just read your post and you said you have been pain free for a year. I am so happy for you. It's gives me great hope when I read about women who finally got lucky and found the right doctor. I am feeling so hopeful right now because I live in the Chicagoland area. I would be so appreciative if you would pass along the name and telephone No. of that doctor. My symptoms are pretty similar to yours. I will be waiting for a reply from yoy. I wish God's blessings on you and pray you continue to stay pain free.
CommentTO XXXXXXX - I just read your post and you said you have been pain free for a year. I am so happy for you. It's gives me great hope when I read about women who finally got lucky and found the right doctor. I am feeling so hopeful right now because I live in the Chicagoland area. I would be so appreciative if you would pass along the name and telephone No. of that doctor. My symptoms are pretty similar to yours. I will be waiting for a reply from yoy. I wish God's blessings on you and pray you continue to stay pain free.
CommentHi, Kat - What is LSC?
CommentHI GELLEXI: LSC is lichens scelrosus , i dont' remeber what the c stands for. All ages can get it. The dr., if he is up on it can see the skin and that is how it is diag. Most of the V conditions that I have researched are treated with at least a steroid creme like Clobetosol, and there are several other types. Sometime you need a hormone cream also. I think if you research you will be able to bring a print out to your derm. or obg so they can just let you try it. It has seemed to help me with the V spot.
CommentHI GELLEXI: I am not sure what the C stands for but I have Lichen Scelrosus. My obg and my derm. both gave me the same diag. All ages can get it. I think if you research the net, it will tell you that most Vulvodynia is treated with some type of steroid. I use clobetosal and sometime a hormone creme is perscribed.
CommentTo Monica and Kat -- yes some of the symptoms of vulvodynia can be do to the pain cycle theory -- the lidocaine helps to shut things off and give the nerves a break in the cycle. Along with the Elavil -- I was up to 40mgs a night -- it seemed to help. I only suffered horribly and life changing for about 8 months but I found the right help after about 5 months and saw improvement. The hard part is finding what works and finding a good doctor. The doctors in Chicago that I saw were Drs. Sangeeta Senapati and Frank Tu. They are with the North Shore group. They have offices in Skokie on Kenton and Highland Park on Park Ave West near Highland Park Hospital. Both are young and trained at the University of Michigan Vulvar Pain Clinic. Both are wonderful and I hope they help you Monica. Sorry I did not reply right away -- don't always check this website every day.
CommentTo Monica and Kat -- yes some of the symptoms of vulvodynia can be do to the pain cycle theory -- the lidocaine helps to shut things off and give the nerves a break in the cycle. Along with the Elavil -- I was up to 40mgs a night -- it seemed to help. I only suffered horribly and life changing for about 8 months but I found the right help after about 5 months and saw improvement. The hard part is finding what works and finding a good doctor. The doctors in Chicago that I saw were Drs. Sangeeta Senapati and Frank Tu. They are with the North Shore group. They have offices in Skokie on Kenton and Highland Park on Park Ave West near Highland Park Hospital. Both are young and trained at the University of Michigan Vulvar Pain Clinic. Both are wonderful and I hope they help you Monica. Sorry I did not reply right away -- don't always check this website every day.
CommentI don't think I have LS because I don't have any itching, just pain. Also, upon examination by GYNs, they tell me the skin/tissue looks perfectly normal. But I will make an appointment with a new GYN and see what he or she says. I would like to try the Clobetosol and/or hormone cream to see if they can help at all. In the meantime, I will continue with caprysilic acid and probiotics to see if I can get rid of any kind of yeast my body may be harboring and to support my intestinal tract (that's another stsory). I'm very disappointed that my dermatologist does not check for or treat vulvodynia, so I think I'll start checking around for another derm. Thank you for all your help, Kat. I'll keep you posted.
CommentI don't think I have LS because I don't have any itching, just pain. Also, upon examination by GYNs, they tell me the skin/tissue looks perfectly normal. But I will make an appointment with a new GYN and see what he or she says. I would like to try the Clobetosol and/or hormone cream to see if they can help at all. In the meantime, I will continue with caprysilic acid and probiotics to see if I can get rid of any kind of yeast my body may be harboring and to support my intestinal tract (that's another stsory). I'm very disappointed that my dermatologist does not check for or treat vulvodynia, so I think I'll start checking around for another derm. Thank you for all your help, Kat. I'll keep you posted.
CommentTO GELLEXI: I don't have any itchng at all thank GOD. I only have pain and burning. But LS can be just burning and your skin may look normal. But clobetasol is used for other vulvodynia conditions. Good luck and please keep me posted because You may find out other treatments, or medications. I think I told you i have a iritation on my butt now. So I guess i have to see my derm again. Keep in touch
CommentI have Lichen Sclerosis and never had itching either, just the bad burning, stinging, etc.
CommentHELLO SUE; What medication do you take? Do you ever get irritation on your butt---like just the outline of your cheecks and sometime up the back end. That's what I am dealing with now. My V seems to be under somewhat of control. Thank GOD no itch.
CommentThis can and will go away. I suffered with it for a year and a half. I had no idea how it started, but I figured it had to do with a new sexual partner, a yeast infection and antibiotic. Time will heal it, I truly do not believe there is any meds that will get rid of it overnight it is a process!!!! Have faith, if I overcame tis you can to. I thought I would never see the light of day. We take little things for granted in life, but when confronted with a situation like this, you will see how humble you can become. Stay strong, this too shall pass. It may not look like it now, but you will get 100% back to normal when you least expect it.
CommentThis can and will go away. I suffered with it for a year and a half. I had no idea how it started, but I figured it had to do with a new sexual partner, a yeast infection and antibiotic. Time will heal it, I truly do not believe there is any meds that will get rid of it overnight it is a process!!!! Have faith, if I overcame tis you can to. I thought I would never see the light of day. We take little things for granted in life, but when confronted with a situation like this, you will see how humble you can become. Stay strong, this too shall pass. It may not look like it now, but you will get 100% back to normal when you least expect it.
CommentThis can and will go away. I suffered with it for a year and a half. I had no idea how it started, but I figured it had to do with a new sexual partner, a yeast infection and antibiotic. Time will heal it, I truly do not believe there is any meds that will get rid of it overnight it is a process!!!! Have faith, if I overcame tis you can to. I thought I would never see the light of day. We take little things for granted in life, but when confronted with a situation like this, you will see how humble you can become. Stay strong, this too shall pass. It may not look like it now, but you will get 100% back to normal when you least expect it.
CommentTO KIM: You sound wonderfully positive and I am truly happy for you. I have been doing so much research that I feel by what I have read my condition L S will not go away. It is something I will need to deal with the rest of my life. I hope for you, continued pain free life and maybe it can happen for me.
CommentI just would like to say that I have been dealing with this condition since May of this year and like Kim says it does make you a humble person dealing with something like this. You never realize how you take life for granted until something like this appears. Really makes you appreciate much more in life esp on the days that you do feel your best. I went out of town this weekend and it was like this condition was much better. I had a really bad experience and work today and the V seemed much worse. Sometimes I wonder if the stress of life makes this condition that much worse. Seems like when I am relaxed and carefree so it the V area. I hope and pray that this all goes away eventually. I do have to say that I am much much better than I was when this all came about several months ago. Like Kim says I think it does take time for it to pass. I am so tired of going from doctor to doctor. I asked my doctor if she has ever dealt with anyone whose V went away and she says it never does go away but it gets better. I thank God that mine has improved and I pray he heals me completely it that area. I also pray for you other women on this site who are dealing with this terrible condition. No one truly knows what we deal with and how it is constantly on your mind 24-7. It is discouraging when someone asks you what is wrong with you and you feel like it does no good to explain bc it is something that no one knows anything about. Almost like you have made up a condition yourself. I guess all you can do is just be your own detective and discover what works best for you. I think each one of us feels the pain in different areas and at different degrees. I know mine has moved around so much that it is even hard to explain to a doctor where I hurt. Ladies just stay positive and put your faith to work. Attitude is everything.
CommentIt is very hard to be positive. I was diagnosed with vulvodynia 20 years ago. At that time very little was known about it. The pain has never gone away and only worsens over time. I remember a time when it was painful only once in a while, and I always hoped that maybe this time it won't come back. But it always did. I was diagnosed with Multiple Sclerosis a year before I started having V pain. It is tough having MS and all the disabilities that have come with it. But the challenges of MS are easy compared to the V pain and all the merda (means "shit" in Itatlian) that comes with it.
CommentIt is very hard to be positive. I was diagnosed with vulvodynia 20 years ago. At that time very little was known about it. The pain has never gone away and only worsens over time. I remember a time when it was painful only once in a while, and I always hoped that maybe this time it won't come back. But it always did. I was diagnosed with Multiple Sclerosis a year before I started having V pain. It is tough having MS and all the disabilities that have come with it. But the challenges of MS are easy compared to the V pain and all the merda (means "shit" in Itatlian) that comes with it.
CommentI just wanted to thank a few ppl here: thanks to OOOOOOO "Let her alone" and XXXXXXX ... thank you all for your support- It meant a lot to me! :) I'm really sorry to see Frank leave. I never meant to drive him away. If you're reading this Frank, I think you're a good person and I wish you the best. I think Carolyn expressed my feelings well in her post here: "We shouldn't have to compromise as Frank suggests. Maybe if a few more husbands posted we would not feel that way. Unless a man suffers with our pain they just don't understand what we are going through. We don't want to hear about his frustrations. We already feel bad that our partner don't get sex every time he wants it. Why compound our agony. We just want to hear about treatments that have helped others. " Thanks, Carolyn- that about sums up how I feel! I'm not necessarily "conservative", but like you, I'm here for support, and hearing about a male's frustrations is very disturbing as you articulated so well in your post. Also, thanks to Kat - the Gal- thank you for your prayers... And Gellexi- your hubby sounds wonderful- I hope I can find someone as sweet as he is... gives me hope... anyway, i really wish Frank would come back and just limit his comments about the male perspective... and I'm sorry to have stirred up a hornet's nest here... I was having a bad flare and a bad week... May we all find peace and comfort and help for our pain here... Prayers and blessings to you all...
CommentTO MIRIAM; i am glad u r doing better. it is great of u to make a statement like that to frank, but to honest, I feel the same about a male posting. I think they should have there own forum since we are the ones with the pain and i agree with others who say they fell uncomfortable with a male. That is just my opinion with no offense to any male or female and i think we should move on. Miriam keep posting to us
CommentTO MIRIAM; i am glad u r doing better. it is great of u to make a statement like that to frank, but to honest, I feel the same about a male posting. I think they should have there own forum since we are the ones with the pain and i agree with others who say they fell uncomfortable with a male. That is just my opinion with no offense to any male or female and i think we should move on. Miriam keep posting to us
CommentI also don't want to post my name because this subject of male posting keeps coming back. I say Frank has decided to stop posting so lets leave it at that.
CommentHi Kat: I use Clobetasol ointment once weekly to keep the L.S. at bay, but recently used it once daily for a week due to a bad flareup. I also apply a small amount of Estrace cream twice daily and sometimes emu oil or vitamin e oil. I don't really have pain or irritation around the outline of my cheeks, but sometimes I get irritation in my butt crack. Taking an Aveeno bath is very soothing also.
CommentTO KDC I agree so much in what you posted. I am better also and it does move around. Can I ask you also, do you feel irritation around your butt also?
CommentSUE; YES I also get irritation in the butt crack. Isn't it disgusting just to say that. I use estrace too but I am afraid to use it more than 3xa week. As kdc states, we are glad we are better. Do you think it will ever just go away?
CommentTO KAT: Yes I do have irritation not only around the rectum but also near the top of the crack. Sometimes it is itchy but it only happens like once or twice a day and then it will be fine. I tried limiting some of the foods i ate to see if it got better but it really didn't matter. Here lately I have been having irritation near the clitoris and around the outside of the labia. I have been using a cream my doc gave me that is a steriod/antifungal and also some lidocaine. Can't really see much improvement using them. The pain is not severe right now. If I get involved in a conversation or get my mind occupied I can actually forget the pain but it is still there and when my mind is idle it dwifts back to the pain. It is always there and never seems to leave. I am just praying for the day I wake up and I can say "IT IS GONE" I hope I get there one day. This is not only physically draining but emotionally as well. I have only been married a year and the thought of sex just makes me cringe now. I have lost interest in any intimacy whatsoever. I hope one day I can have my complete life back. And Kim if you are reading this....could you tell us about your plan of treatment that you did to get where you are now? Any info you can offer would be appreciated, might even give some of us hope...Thanks!
CommentTOkdc, YES all those things happen to me also. I also get the burning outside the lips of the labia. I havent had it for awhile right now it is up but butt because I am sitting down watching TV. I have used lidocaine and it takes the sting away sometimes but sometimes I get a reaction to it. At this point I have the V under control. I may see my derm this week to have him examine me. The butt maybe a different condition. I know about not having intimacy with my husband.
CommentKat, yes it is disgusting to even say that. My L.S. went into remission. so anything is possible. Unfortunately, it's been replaced by Vulvar Vestibulitis. I wish I didn't have to use Estrace cream either. I pray that we all get some pain relief and soon.
CommentTO SUE AND KDC It seems to me that there really isn't any new treatments. As I research I see that we all use similar medications. Do either of your doctors tell you that it can just go away one day? My L S on my V is under control. My dr. says there are no patches of white skin. But I don't know what is going on with my butt. I dont see any white.
CommentTO KAT: My doctor says it never goes away. I have faith it will. I just thank God that I don't feel the way I did when this all come about. I just woke up one day with it. I thought I had a urinary tract infection then it went from that to stabbing pain and now that has subsided which I am very thankful and now I just have the burning, stinging, and irritation in the V zone. Does your hair line ever start itching? My doctor did a culture of the anal area and the V zone to check my skin for yeast. She did a swab of my tongue last time and a culture in the vaginal area and both showed yeast. I haven't gotten the latest results back yet. I did have my hormones tested and all were in the normal range. It could be possible that the anal area has yeast. It can also be LS or Lichen Planus. I had a biopsy and it was neg for both. So what treatment are you currently using? I used some Clobetasol tonight cause I have some irritation. Lidocaine seems to sting when i first use it, is that normal?
CommentTO kdc: I have not had any itching along the hair line. I have noy had any itch at all thank GOD. The burning is bad enough. I had some dryness for a few years then one day after I took my bath the V starte to burn unbearable. I currently use clobetasol and estrace. I had to use the clob for 3months 2x a aday then used it less and less until now only 2 x a week. My hormones are low so I use estrace 2x a week also, As i stated before I have Lichen Scelrosus which is in remission for about 4 months in the V but my Butt is the problem now.
CommentTO KDC sorry, I forgot to comment on the lidocaine. Yes I think it can burn at first
Commentthank you ooooooooo! I will continue to post and read and hope you will too! I hope that we can all get some relief. I agree with the person who talked about the emotional suffering of this thing. That is the worst part about it for me. If we all had this stinging pain in our big toe, we wouldn't need a support group! Has anyone here had any luck with neurontin? and how many mg did you take? thanks!
CommentHI MIRIAM, So glad you sound so much better. I am not familiar with that medication. WHat is your actual diag.
CommentHey Beautiful Ladies. To answer KDC request. I didn't have a plan of treatment at first. I continued to go to my GYN, however his expertise was not appealing to me at all. So my mom suggested that I go see her GYN. Thank GOD, I did that. He immediately told me what I had put me on a low dosage of Nortriptiline 20mg to calm my nerves, so that if any were damaged and causing my pain, they could begin to heal themselves. He explained to me that nerves are moving at a high rate of speed all the time. You have to literally slow them down so they can repair themselves and that is what the meds did so I could heal. He also told me to wash my underclothes in dye free detergents, drink plenty of water and add more fruits and veggies to my diet. So I did all of that, and within a month or two I was feeling 60% better and it gradually got better from there. One day I woke up looking for the pain, because you do get use to it being there, and LOW and BEHOLD, all of the pain was GONE!!!!!! I can't thank God enough or my doctor. It took some time, but in the end I was pain free. Again we are here to encourage one another, we don't need any negative feedback or condemnation, most on this site for suffering enough. So if you can't help please don't hinder. God Bless., and
CommentHey Beautiful Ladies. To answer KDC request. I didn't have a plan of treatment at first. I continued to go to my GYN, however his expertise was not appealing to me at all. So my mom suggested that I go see her GYN. Thank GOD, I did that. He immediately told me what I had put me on a low dosage of Nortriptiline 20mg to calm my nerves, so that if any were damaged and causing my pain, they could begin to heal themselves. He explained to me that nerves are moving at a high rate of speed all the time. You have to literally slow them down so they can repair themselves and that is what the meds did so I could heal. He also told me to wash my underclothes in dye free detergents, drink plenty of water and add more fruits and veggies to my diet. So I did all of that, and within a month or two I was feeling 60% better and it gradually got better from there. One day I woke up looking for the pain, because you do get use to it being there, and LOW and BEHOLD, all of the pain was GONE!!!!!! I can't thank God enough or my doctor. It took some time, but in the end I was pain free. Again we are here to encourage one another, we don't need any negative feedback or condemnation, most on this site for suffering enough. So if you can't help please don't hinder. God Bless., and
CommentHey Beautiful Ladies. To answer KDC request. I didn't have a plan of treatment at first. I continued to go to my GYN, however his expertise was not appealing to me at all. So my mom suggested that I go see her GYN. Thank GOD, I did that. He immediately told me what I had put me on a low dosage of Nortriptiline 20mg to calm my nerves, so that if any were damaged and causing my pain, they could begin to heal themselves. He explained to me that nerves are moving at a high rate of speed all the time. You have to literally slow them down so they can repair themselves and that is what the meds did so I could heal. He also told me to wash my underclothes in dye free detergents, drink plenty of water and add more fruits and veggies to my diet. So I did all of that, and within a month or two I was feeling 60% better and it gradually got better from there. One day I woke up looking for the pain, because you do get use to it being there, and LOW and BEHOLD, all of the pain was GONE!!!!!! I can't thank God enough or my doctor. It took some time, but in the end I was pain free. Again we are here to encourage one another, we don't need any negative feedback or condemnation, most on this site for suffering enough. So if you can't help please don't hinder. God Bless., and
CommentHey Beautiful Ladies. To answer KDC request. I didn't have a plan of treatment at first. I continued to go to my GYN, however his expertise was not appealing to me at all. So my mom suggested that I go see her GYN. Thank GOD, I did that. He immediately told me what I had put me on a low dosage of Nortriptiline 20mg to calm my nerves, so that if any were damaged and causing my pain, they could begin to heal themselves. He explained to me that nerves are moving at a high rate of speed all the time. You have to literally slow them down so they can repair themselves and that is what the meds did so I could heal. He also told me to wash my underclothes in dye free detergents, drink plenty of water and add more fruits and veggies to my diet. So I did all of that, and within a month or two I was feeling 60% better and it gradually got better from there. One day I woke up looking for the pain, because you do get use to it being there, and LOW and BEHOLD, all of the pain was GONE!!!!!! I can't thank God enough or my doctor. It took some time, but in the end I was pain free. Again we are here to encourage one another, we don't need any negative feedback or condemnation, most on this site for suffering enough. So if you can't help please don't hinder. God Bless., and
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CommentThis is not directed to anyone in particular. However,I don't agree there should be no negative feedback. In the real world, things are good and sometimes they are not. I think you learn to take the bad with the good and hope for the best. A couple of weeks ago someone commented that suicide should never be mentioned here again. I disagree. It had been a viable topic to which many responded. Let's exagerate and say 50% of those who have posted here have considered the possibility of suicide. Don't you think that is something that should be discussed, rather than something to avoid? Just because something is unpleasant doesn't mean it does not exist. And it doesn't mean we should just look the other way. Call my crazy but I thought the purpose of websites like this one, is to share our real experiences both good and bad, and as honestly as we can.
CommentThis is not directed to anyone in particular. However,I don't agree there should be no negative feedback. In the real world, things are good and sometimes they are not. I think you learn to take the bad with the good and hope for the best. A couple of weeks ago someone commented that suicide should never be mentioned here again. I disagree. It had been a viable topic to which many responded. Let's exagerate and say 50% of those who have posted here have considered the possibility of suicide. Don't you think that is something that should be discussed, rather than something to avoid? Just because something is unpleasant doesn't mean it does not exist. And it doesn't mean we should just look the other way. Call my crazy but I thought the purpose of websites like this one, is to share our real experiences both good and bad, and as honestly as we can.
CommentTO KIM: Thanks so much for answering. So at what point did you decide to wean off the Nortriptiline. I am on Amitriptyline 25mg and trying to wean off. Just wondering if I should stay on it a little longer. The stabbing nerve pain is gone but I am just having the redness and irritation now. I had a yeast culture done on the skin and they came back negative.
CommentTO GELLEXie; i disagree with you about speaking of suicide on this site. Just imagine if someone said just one little thing to set someone off and they did commit suicide? How awful would that be, This is a site for women to support each other, share experiences and medications to help deal with this. I think if things are that bad and you feel suicide is the answer then you MUST seek professional help. This is not the place.
CommentTO KDC In your last post to me you said that the pain moves around. Do you ever have a day where you don't feel any burn or pain of any kind? And do you use clobetasol?
CommentI disagree completely with no name. If someone is contem-plating suicide, she is less likely to try it if she is given the opportunity to speak to others about her feelings. We are not a group of psychiatrists, but we are a group of women who have the same goal - to share with one another what works and what doesn't work in our shared quest for treatments that work and, probably down the road, a cure for V. I am sorry if I have offended anybody. I am not suicidal. If the topic of "S" is crossing a line somewhere, I can respect that. And I will not make mention of it in the future.
CommentI disagree completely with no name. If someone is contem-plating suicide, she is less likely to try it if she is given the opportunity to speak to others about her feelings. We are not a group of psychiatrists, but we are a group of women who have the same goal - to share with one another what works and what doesn't work in our shared quest for treatments that work and, probably down the road, a cure for V. I am sorry if I have offended anybody. I am not suicidal. If the topic of "S" is crossing a line somewhere, I can respect that. And I will not make mention of it in the future.
CommentTO KAT: I always seem to have some sort of itching or burning during the day. Not always constant but maybe for a little while throughout the day. I have used clob. and I just got really worried about using any steriod for a long period of time due to thinning skin so I have back off of it. My doc prescribed a med that has a steriod/antifungal in it bc she thought that my burning may be due to a yeast infection but my culture has come back negative. I am just starting to believe that the irritation we experience has to be nerve endings that are just irritated and I feel strongly with Kim's post that it is just a matter of time that things will heal that it is just a process. When I wake up in the mornings my irritation doesn't seem to bother me but once i get to work it seems to be noticeable. I think stress brings mine on. I had a wonderful weekend with my husband on a weekend trip this past weekend and the pain was almost non existence, but then I had a very bad day at work at it all flared up. I think if we can control our stress this would go away. I know that some of the women have LS and I am not sure about skin conditions like that, but I tested neg for Lichen Planus and Sclerosis so hopefully once things calm down I will be back to normal. Kat, I thought I had a post from you where you said that you had irritation in the butt...does yours bleed occassinally?
CommentTo OOOOOO: my diagnosis is vestibular vestibulitis... I have used amytriptyline (sp?) with some success, but couldn't handle the higher doses. Am now on neurontin aka gabapentin... i just would like to have some kind of life... sitting and walking still hurt... very frustrating as you all know... still wondering if anyone here has had success with gabapentin/neurontin? am up to 1000 mg now... how are you doing oooooo?
CommentI just wanted to give some home. I had painful vulvodynia symptoms for 7 months before I was refered to pelvic floor pysiotherapy. I also gave up aspartame (a trigger for me) and I am now 100% painfree. I went to pysio in Canada but the best in the US is Liz Rumner or Stephanie Prendergast. Take Care!
CommentI just wanted to give some home. I had painful vulvodynia symptoms for 7 months before I was refered to pelvic floor pysiotherapy. I also gave up aspartame (a trigger for me) and I am now 100% painfree. I went to pysio in Canada but the best in the US is Liz Rumner or Stephanie Prendergast. Take Care!
CommentTO KDC; First, yes my but does get irritated but no bleeding at this time. About 6 months ago I did have some slight bleeding in the V from the LS but since then, THANK GOD I havent had any since I have been using the Clobetaso. I understand your fear of the thinning skin with the steroid but all the research (over a 1yr) It has been stated that to keep LS and most vulvodynia under control you will need to use it once or twice a week, I purchaed the book called THE V BOOK by Elizabeth G Stewart she is highly acclaimed at this condition and she also states steroid will not cause thinng if used as maintainece. I think you and I have the same experiences with our pain and burn but my skin was like cigarette paper. I also have low hormones so I use Estrace. I think there is another member here that has the same condition. I also am not bothered by it while I am sleeping but as the day goes on there is a little something that seems to pinch or sting or even a little irritation. I am going to my Derm this afternoon for a check up. As long as I continue to use the Clobetasol check ups are a must to keep a watch on everything.
CommentTo KDC: I m by far no expert nor am I a doctor, however I would not suggest you start to wean until you are at least 85% to 90% better. It is a slow process, let nature takes it course and don't rush. You will be alright and pain free in due time. Drink plenty of water to flush residue from the meds out of your system. Also eat fruits and nuts if you like them. Try to stay as close to organic foods as possible while on the meds. Its just better for you (smile) My little personal advice for you. Keep me posted as to how you are doing. I always promise myself that when this ordeal was over, I would visit the site and try to encourage others, the way I wish someone had encouraged and understand me when I was going through this.
CommentTo Whom This May Concern: I m not here to get into childish debates about what should and should not be discussed on this website. My mind extends beyond those childlike activities. I m here to encourage those who want to be encouraged. So continue to have a blessed day, because I will...
CommentTO KDC; JUST finished answering you post to me and I forgot to mention that: YES my pain was much worse at work, My Dr. put me on temporary disability until I got it under control and during that time the company I worked for went out of business and now I am on unemployment until I can find another job. Please scroll back to my first answer to you. I also agree with Kim that maybe you shouldn't wean off until you are about 90% better. This is a wonderful site for us to all share.
CommentJust got back from the gyn and she said that I'm a candidate for vestibulectomy with vaginal advancement..b/c my pain is localized to the vestibule. has anyone had that surgery? not sure i want to go that route yet, but i may have to if other treatments dont pan out? feel free to email me if you know anything or anyone who had the surgery... thanks!
CommentKim, You stated that this started with a new sexual partner and then a yeast infection, and this is how mine started. Are you still with this partner? Sometimes I wonder if perhaps I would be better off breaking off the relationship even though he is the love of my life, and then perhaps I will begin to heal. I'm just so confused.
CommentHi, I haven't posted since 2008. I was diagnosed with vulvodynia in 2006 after a yeast infections and multiple fungal meds which I think started this whole thing. After running the gamut of specialists and all sorts of meds and expense, I did get some relief for approximately 7 months. I did try and wean myself off of elavil which was okay for about 2 months and then bingo it was back with a vengeance. I am back on elavil and working myself up to 50mg which usually works, I am putting the lidocaine on a cotton ball at nite and putting it at the beginning of my vagina.My doctor also has me on Vagifem which is a small little estrogen pill that u inseert 2x a wk, she said it is not systemic, because I have been afraid of estrogen. I also am going thru menopause(very late in life, I started when I was 59). She said she will probably send me to a physical therapist when things calm down again. I did do that about 1 1/2 yrs ago and it did help. I do think stress has alot to do with this,I just wish someone could nail it down. I had been very active, I used to kayak, ride bikes, play basketball and now all of that is on hold.By the way during the 7 months that I was feeling half way decent, I did ride my bike, and actually had sex, although it wasn't the most comfortable thing to do. My doctor also believes in alternative treatment in case we run into a roadblock. She recommends using coconut oil which you can get at a natural food store or I think I got mine at GNC---has no additives, is pure and she recommends it for lubrication during sex----and it smells good too. Honestly I am not thrilled taking elavil, because of some of the side effects but for me it works and I need some quality of life. There is more research being done, please see www.nva.com -----I actually joined this association and get updates and they also give places where different trials are going on.I sit and look at the jeans in my closet and wonder if I ever will wear them again. I like many others also have interstial cystitis, irritable bowel and I haven't been diagnosed specifically with fibromyalgia but I do ache to the touch. Hopefully someday we won't have to even post here and we all will get our life back---hang in ladies For some reason I could not correct the above website, it is www.nva.org
Commentjust correcting my last post- i am currently using this email address!
CommentDear xxxxx, I don't want to mislead you or anyone else reading this entry. I m not sure if it was my sexual partner or the yeast infection. What I said was that "I figured between a new sex partner, and yeast infection this was triggered". Up until today, I m still not sure what actually triggered it, that may have been it or may not have been the reason. Yes, my fiance' and I are still together it has been going on 4yrs now. Do not break up with your boyfriend, based on something that you misunderstood in my entry. Until you can confirm a connection between him and your condition I would say its safe to remain in your relationship. Now if there is other stuff going on, and only you would know that, and PLEASE don't post your personal issue with him online, LOL then that is a decision you have to make on your own, ok. Be blessed and know that it will get better and you will be alright.
CommentHELLO MIRIAM: I am having some problem with my computer so I hope I don't show up twice. I don't know first hand about that procedure but I have seen previous members post about it, and the results, I think, were not favorable. Please get a 2nd opinion and search the internet and this site before you make a decision. This is a wonderful forum for women to share their personal experiences and treatments. GLAD to see you are back posting. GOOD LUCK GOD BLESS!!!
CommentHELLO MIRIAM: I am having some problem with my computer so I hope I don't show up twice. I don't know first hand about that procedure but I have seen previous members post about it, and the results, I think, were not favorable. Please get a 2nd opinion and search the internet and this site before you make a decision. This is a wonderful forum for women to share their personal experiences and treatments. GLAD to see you are back posting. GOOD LUCK GOD BLESS!!!
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Commentto xxxxxxx: i also started having symptoms after intimacy with a new bf...i was fine before...you're lucky your bf is still with you- definitely stay with him- he sounds like a gem! :) now, i cant ride a bike, wear underwear, or anything near that area... also can't sit flat... hoping this new med does the trick... KAT- i've met a few ppl with vestibular vestibulitis who had the surgery and did well... my understanding is that as long as the pain is limited to the vestibule, then you are a good candidate for surgery... however, having said that, if anyone with V V has not had success with vestibulectomy with vaginal advancement, I really would like to hear their stories... as for discussion of suicide, i for one am not actively suicidal, but yes it has crossed my mind as i'm sure it has for many here... i was reading about how to talk to someone who is suicidal, and from my reading, it sounds like it's impt to acknowledge their feelings and offer to listen... of course, professional help is warranted as well... but avoiding the subject or talking about it, will not affect the person's decision... at least that's what i've read... suicidal ideation is a cry for help and support... well, nuff bout that... i'm happy for the gal who was able to get better with elavil... that's inspiring! well, gnite for now... wishing you all peaceful and painfree days...
CommentHas anyone ever tried prescription Marinol (contains active ingredient in MJ) for pain? I've never used MJ, but I've been reading that Marinol is sometimes useful for treating pain.
CommentHas anyone ever tried prescription Marinol (contains active ingredient in MJ) for pain? I've never used MJ, but I've been reading that Marinol is sometimes useful for treating pain.
CommentI'm coming back to this site after 2 years to tell you that I am completely healed from the vulvodynia that I was diagnosed with. An excellent homeopath helped me through this. It took 2 years but I am 100 percent over it. And I had one of the worst cases I knew of. Just wanted to give my friends some hope.
CommentI'm coming back to this site after 2 years to tell you that I am completely healed from the vulvodynia that I was diagnosed with. An excellent homeopath helped me through this. It took 2 years but I am 100 percent over it. And I had one of the worst cases I knew of. Just wanted to give my friends some hope.
CommentHi Everyone! my name is sheila and I was diagnosed with vulvodynia about 4 months ago. I took antibiotics for 20 days to try and clear a uti and I believe that is what started it all. I developed INTENSE burning inside my vagina and I went from doc to doc and no on enew what it was until i finally found a doc that did a biopsy and it showed inflammation so therefore she said i had vulvodynia. I was then put on 25 mg of lyrica and weekly diflucan for a few weeks...NOTHING helped so i went to a few more dos and nothing and finally i gave up and just went to see my family doc and he has since upped my dose to 200 mg 2x daily of lyrica and 25 mg nortriptaline (to block pain signals) Oh I forgot to state that what they did find is a chronic yeast infection ( i have never had on ein my life until now) and i had had it sooooooo long that my nerves have been damaged so it became VERY difficult to sit on my rump as it would be very painful and numb.. so anyway all the pain meds have been working WONDERFUL (except 30 pounds weight gain..im workn onit ) Now, as for my yeast infection diflucan doesnt seem to be working but im on it weekly for 6 months..meanwhile I took matters into my own hands and went to a compounding pharmacy and bought boric acid and 600 mg gel capsules and make my own suppositories and i insert 1 daily 2x a day for 14 days and then im going to do it 2xs daily twice a week for 2 weeks and i am hoping that should do it..and if it comes back ill do it again for a few days. I would say so far its working better than anything else..well see.. I have no discharge but it still burns a little inside the vagina and i still feel numbness in the butt cheeks..thank God for medicine.. I hope some of what Ive written helps someone..This can be really depressing. I think some people just dony understand how devastating this can be and sooooo hard to talk about..I feel like when I am some place and im talking with people or friends but I have to excuse myself because of intense burning that I cant say..."my vagina is on FIRE at this moment"I feel i have to suffer in silence sometimes. I don't have all the same symptoms as some of you women on here but I am not normal like I was down there anymore and I wonder if I ever will be again...I am glad I am not alone..Let us all keep praying
CommentHi Everyone! my name is sheila and I was diagnosed with vulvodynia about 4 months ago. I took antibiotics for 20 days to try and clear a uti and I believe that is what started it all. I developed INTENSE burning inside my vagina and I went from doc to doc and no on enew what it was until i finally found a doc that did a biopsy and it showed inflammation so therefore she said i had vulvodynia. I was then put on 25 mg of lyrica and weekly diflucan for a few weeks...NOTHING helped so i went to a few more dos and nothing and finally i gave up and just went to see my family doc and he has since upped my dose to 200 mg 2x daily of lyrica and 25 mg nortriptaline (to block pain signals) Oh I forgot to state that what they did find is a chronic yeast infection ( i have never had on ein my life until now) and i had had it sooooooo long that my nerves have been damaged so it became VERY difficult to sit on my rump as it would be very painful and numb.. so anyway all the pain meds have been working WONDERFUL (except 30 pounds weight gain..im workn onit ) Now, as for my yeast infection diflucan doesnt seem to be working but im on it weekly for 6 months..meanwhile I took matters into my own hands and went to a compounding pharmacy and bought boric acid and 600 mg gel capsules and make my own suppositories and i insert 1 daily 2x a day for 14 days and then im going to do it 2xs daily twice a week for 2 weeks and i am hoping that should do it..and if it comes back ill do it again for a few days. I would say so far its working better than anything else..well see.. I have no discharge but it still burns a little inside the vagina and i still feel numbness in the butt cheeks..thank God for medicine.. I hope some of what Ive written helps someone..This can be really depressing. I think some people just dony understand how devastating this can be and sooooo hard to talk about..I feel like when I am some place and im talking with people or friends but I have to excuse myself because of intense burning that I cant say..."my vagina is on FIRE at this moment"I feel i have to suffer in silence sometimes. I don't have all the same symptoms as some of you women on here but I am not normal like I was down there anymore and I wonder if I ever will be again...I am glad I am not alone..Let us all keep praying
CommentHi Everyone! my name is sheila and I was diagnosed with vulvodynia about 4 months ago. I took antibiotics for 20 days to try and clear a uti and I believe that is what started it all. I developed INTENSE burning inside my vagina and I went from doc to doc and no on enew what it was until i finally found a doc that did a biopsy and it showed inflammation so therefore she said i had vulvodynia. I was then put on 25 mg of lyrica and weekly diflucan for a few weeks...NOTHING helped so i went to a few more dos and nothing and finally i gave up and just went to see my family doc and he has since upped my dose to 200 mg 2x daily of lyrica and 25 mg nortriptaline (to block pain signals) Oh I forgot to state that what they did find is a chronic yeast infection ( i have never had on ein my life until now) and i had had it sooooooo long that my nerves have been damaged so it became VERY difficult to sit on my rump as it would be very painful and numb.. so anyway all the pain meds have been working WONDERFUL (except 30 pounds weight gain..im workn onit ) Now, as for my yeast infection diflucan doesnt seem to be working but im on it weekly for 6 months..meanwhile I took matters into my own hands and went to a compounding pharmacy and bought boric acid and 600 mg gel capsules and make my own suppositories and i insert 1 daily 2x a day for 14 days and then im going to do it 2xs daily twice a week for 2 weeks and i am hoping that should do it..and if it comes back ill do it again for a few days. I would say so far its working better than anything else..well see.. I have no discharge but it still burns a little inside the vagina and i still feel numbness in the butt cheeks..thank God for medicine.. I hope some of what Ive written helps someone..This can be really depressing. I think some people just dony understand how devastating this can be and sooooo hard to talk about..I feel like when I am some place and im talking with people or friends but I have to excuse myself because of intense burning that I cant say..."my vagina is on FIRE at this moment"I feel i have to suffer in silence sometimes. I don't have all the same symptoms as some of you women on here but I am not normal like I was down there anymore and I wonder if I ever will be again...I am glad I am not alone..Let us all keep praying
CommentHi Everyone! my name is sheila and I was diagnosed with vulvodynia about 4 months ago. I took antibiotics for 20 days to try and clear a uti and I believe that is what started it all. I developed INTENSE burning inside my vagina and I went from doc to doc and no on enew what it was until i finally found a doc that did a biopsy and it showed inflammation so therefore she said i had vulvodynia. I was then put on 25 mg of lyrica and weekly diflucan for a few weeks...NOTHING helped so i went to a few more dos and nothing and finally i gave up and just went to see my family doc and he has since upped my dose to 200 mg 2x daily of lyrica and 25 mg nortriptaline (to block pain signals) Oh I forgot to state that what they did find is a chronic yeast infection ( i have never had on ein my life until now) and i had had it sooooooo long that my nerves have been damaged so it became VERY difficult to sit on my rump as it would be very painful and numb.. so anyway all the pain meds have been working WONDERFUL (except 30 pounds weight gain..im workn onit ) Now, as for my yeast infection diflucan doesnt seem to be working but im on it weekly for 6 months..meanwhile I took matters into my own hands and went to a compounding pharmacy and bought boric acid and 600 mg gel capsules and make my own suppositories and i insert 1 daily 2x a day for 14 days and then im going to do it 2xs daily twice a week for 2 weeks and i am hoping that should do it..and if it comes back ill do it again for a few days. I would say so far its working better than anything else..well see.. I have no discharge but it still burns a little inside the vagina and i still feel numbness in the butt cheeks..thank God for medicine.. I hope some of what Ive written helps someone..This can be really depressing. I think some people just dony understand how devastating this can be and sooooo hard to talk about..I feel like when I am some place and im talking with people or friends but I have to excuse myself because of intense burning that I cant say..."my vagina is on FIRE at this moment"I feel i have to suffer in silence sometimes. I don't have all the same symptoms as some of you women on here but I am not normal like I was down there anymore and I wonder if I ever will be again...I am glad I am not alone..Let us all keep praying
CommentHi Jen, Can you tell me your protocol with homeopath. I am seeing one right now, perhaps you can give me some feedback. Do you think we can chat or e-mail. If yes, I will give you my e-mail address. Thanks
CommentJen, I'd also like to know more about your treatment. Thanks. Sue
CommentI just posted something about the Marinal question- not sure if it went through??................if not, will try again soon! also wanted to let ppl know that I've started a blog on Vulvodynia along with other women on the following website. I think the more we can share, the more we can raise awareness, compare notes, and help each other emotionally and physically too................................................. check out the blog at http://www.wellsphere.com/relationships-sex-article/vulvodynia/844147 >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> perhaps this would be a good site to flood with blogs and such....a large community of V sufferers can only be a good thing... feel free to join this site and post... thank you and wishing you all more peace and healing! :)
CommentGellexi- That's an interesting question about the marinol. i think it's a very controlled substance only administered to ppl in severe pain- like terminally ill cancer patients... But it probably would be worth a try if you could get a doc to prescribe it. Better yet, maybe you know someone who is growing MJ somewhere :). I bet that would help us! :) >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> To Sheila: I'm glad you were able to get relief from your yeast infection. How did the lyrica and nortyptaline work for you? and yes, having to keep our pain all to ourselves makes it even harder. I wish I could just tell my coworkers that my v is burning today in the same way that they can casually discuss a headache or stomach ache. >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> This is why I am so interested in raising the awareness of the public about this. Today was a good day- painwise for me- I hope it's not just a fluke and the meds are starting to work! Stay Strong everyone! We must be brave and keep up our hope with this thing!
CommentTO SHELIA OR ANYONE; I have the V pain under somewhat contol with steroid creme. But now it is my Butt. At night the irritation is really bad. My dr. said there is nothing in that area. I tried advill last night at that seemed to help but I can't be certain yet. Does anyone else suffer with this.
CommentKat: I just wanted to let you know that I have found another doctor and he has changed my medicine from Amitriptlyine 25mg to Neurontin 300mg (3X a day). Also, he told me to stop using the steroid cremes, which I had already pretty much did and to start using olive oil in the V area as well as for the irritation in the butt. Just wanted to let you know that things are soooooo much better. I think that the steriods make things worse esp for me since I have very sensitive skin. My doctor is also sending me to a pelvic floor therapist. Hope you are doing better now. Keep in touch!
CommentAnyone try Savella for their vulvodynia? Savella is a new drug in the antidepressant category that is FDA approved for Fibromyalgia.
CommentTo kdt: I'm on neurontin as well. I'm still waiting for it to work. Just wanted to let you know, that I got very sleepy off of it at first, but then I adjusted to it, so try to stick with it if you can. Are you staying at 300- 3X a day? Is that a starting dose or are you working your way up? Good luck!
CommentMiriam- I actually meant that I am on 300mg (100mg- 3Xs a day). So far I have worked up to 200mg. Doesn't really seem to make me sleepy. I started off at night...taking one at bedtime, then after 3 days he said to take it in the afternoon and night and after 5 days take it all three times during the day. So far sleepiness hasn't been an issue for me. I seem to be doing fine on it, pain has been diminished. I did feel some muscle spasms today, I think that is my problem mostly is the tightening pelvic muscles (i had a car wreck in April and haven't been the same after). I starte Pelvic floor therapy in another month so hope it solves this.
CommentHi Cassandra, I have not tried Savella, but I hear that it's a promising new med for V- It's an SNRI antidepressant similar to Cymbalta. I believe Savella has been available in Europe for some time and has recently been approved by the FDA in the US. I did well on the Cymbalta (painwise), but I couldnt handle the side effects, although many women with V do fine with Cymbalta. Let us know if you try it and how it works for you! Good luck! __________ To Kdt: I am so glad that the neurontin is working for you at such a low dose!! I just took 1000 mg just now for bedtime. Hoping that it works for me too. What is your diagnosis, kdt?
CommentMiriam: WOW!!! I thought 300mg was a high dose. Sorry you haven't been having any success so far with that. My doctor told me I have Pelvic Floor Myalgia and possible mixed vulvodynia. He is going to do a test to rule out Interstitial Cystitis which I don't feel I have anyway. I think my itching/burning is a result of the pelvic muscles. I have been doing much better since I have been taking the medicine. Today I felt minimal pain but like I said it was bc of those muscles that need relaxing and retraining.
CommentOne thing I read about Savella is that it is a pregnancy category X which is proof it will harm the baby. So, I don't think I will be trying that anytime soon. I am currently on Lyrica 50mg twice a day and it really helps and use lidocaine and Lidex too. Has anyone ever experienced this--(I told my gyn about it a few times and she just blew me off. It seems that once you have vulvodynia, and if another problem comes up, it is stereotyped as vulvodynia.) I experience a couple of days after my period, couple of times premenstrual and once mid cycle, where I have vasocongestion in my vulva. My labia just swells with blood and I am not sexually aroused when this happens and the only thing that relieves it is an orgasm. If I don't have an orgasm, it can last all day and be very painful. It is very distressing. If this happens at work, I have to take a narcotic that fortunately my PCP prescribed for me. I didn't know if it was from a trapped nerve maybe in the vulva. Anyone else experience this?
CommentTo Kdt: your treatment sounds promising. Glad to hear that you're making such good progress! That is a super low dose of neurontin that you are taking, so it's awesome that it's working for you! I'll let you know what happens with my neurontin experiment. I guess that's how it feels - like I'm experimenting with a bunch of meds. What is pelvic myalgia (sp)? Hi Cassandra: I am so sorry about your diagnosis of vasocongestion- I've heard of it but don't know too much about it. I hope you find something that helps soon. I guess your best bet is to continue consultation with a vulvar specialist. I was wondering how often you take the Lyrica - is it 50 mg in the am and 50 in the pm? do you think the Lyrica is helping your pain the most or is it the lidocaine? How often do you apply the lidocaine and the lidex (i think that's what you called it)? Sorry for all the questions! just was wondering what is working for you! :)
CommentHas anyone had any problems with anal itching/irritation with their vulvodynia and if so what have you done for that? Also, has anyone tried pelvic floor therapy?
CommentHi Miriam - I was taking 100 mg amitriptlyine at bedtime and it helped me sleep at night but after 4 years the effects of it were wearing off and a new doctor put me on neurontin starting at 400 mg. It really did nothing for my pain or sleep. When I went back to her she said not to worry that she would keep increasing it until we got a dosage that would help. She scared me when she said that we could go as high as 3600 mg. I just refused to go on a dose anywhere even close to that. I told her to put me back on the amitriptlyine again. I am back on my 100 mg. What helps me the most is xanax. I take 1 mg 3 x daily. I know it is addictive but I started on .25 mg about 20 yrs. ago. My system calls for more recently but I refuse to give in. Believe me when I say I do my share of suffering but xanax has given me a decent quality of life for years. The way I look at it is that whatever we take for this horrible problem will have to be increased sooner or later. Constipation is a big problem from medicine for me. I am glad the neurontin is working for you. Do you just take it at bedtime and do you have any side effects? Does it help a lot with your pain? I am going for pelvic floor therapy for the second time. The first therapist gave up on me after about five sessions. At least she was honest and said she wasn't helping me. I have started with a new therapist and she has a completely different way of doing the therapy. She works on trigger points inside the vagina and tries to relax them. I hope this helps. God Bless.
CommentTo Miriam--hello, yeah, the vasocongestion is the worse thing and it makes me sad that my gyn won't help me and she gets frustrated with me and I don't even think she believes me. Oh well, I am over it. I told my PCP about it and he gave me clonidine (a blood pressure med) because the vasocongestion is a localized area of high blood pressure. It helped one time but not the other 3 times, I have to try it again. It is so distressing. One time I had it for a day and a half and I was in so much pain that I busted out crying at work. My PCP gave me Lortab for it too. Thank God he at least believed me and gave me pain med. I just wish it would go away but it is not likely, so I have to deal with it. Okay, sorry, just had to vent a little about that. On the Lyrica--I first tried this two years ago. I had this chronic sore area on vulva for a year. I could not believe that I took a 50mg of Lyrica at night and for the first time in a whole year I woke up w/o feeling the sore area!!! I was only it Lyrica for a couple of months back then. I've restarted it just a month and 1/2 ago. I take one 50mg around 7am and the second one around 3pm. I may change it to taking it before bed again. Not sure if you know--Lyrica is the "sister" drug to Neurontin. Lyrica bonds tighter to the pain receptor sites which means you can get away with a lower dose with less side effects is what they say. I use to take Neurontin 400mg three times a day, that was the therapeutic dose I found best. It caused a side effect though of chronic sinus pain--in my head, teeth, nose, jaw. I would take just one 100mg capsule and feel the sinus pain! The Lyrica just causes me some nasal congestion once in a while and that is it. I would die w/o the Lyrica. I can't make it through one day pain free w/o the medicine. I have realized that I have nerve pain that Lyrica helps with but also I have severe inflammation at times. For that I use just a teeny bit of Lidex only on the inflamed area and it gives me relief. The inflammation happens at certain times around my period usually. Inflammation in that area is a terrible feeling too. I have a compounded rx of Lidocaine 1%/Ibuprofen 2% in a plasticized base. I like the base because it stays on my skin and doesn't leak through my clothes like a water base. I have to use this every time after I urinate (if I've been sitting for the day). I just use a little bit in the vaginal opening area. I also use it before bed in the same area and on the labia minora and in the morning. I would die w/o this rx too. I have Lidocaine 5% when I need more relief and nothing is really cutting it. I don't need it too often thanks to the Lyrica. yeah, so between the nerve pain, inflammation, and vasocongestion, I am surprised I am not in a mad house! I try really hard though to help myself. One of the worse things I hate about vulvodynia is that when you have a really bad day and you are having a hard time at work, it is not like you can just shout out "my vulva hurts" like you could say I have a headache or back ache!
CommentTO KDT Hello thanks for your response. I use the steroid only on my V 2xa week to keep the Lichen Scelrosus from coming back. I dont use the steroid on my butt. It seems to move up and down the right side of my butt inside the cheek. I tried the olive oil today but it did not seem to help but I will use it for a couple of days. My Dr. said there is nothing showing in that aarea. I fear I damanged the nerve in that area because of the v PAIN i sat back a lot. So glad you are doing so well. My V is pretty much under control THANK GOD. STAY IN TOUCH
CommentTO KDT Thanks for your response. I tried the olive oil today on my butt but it doesnt seem to help. I will give it a few days. I dont use the steroid on my butt only use it on the V to keep the Lichens Scelrosus under control and that seems to be helping....Thank GOD I fear I damaged the nerve on my right side of my butt from sitting back for so long so my V wouldn't hurt. I am truly glad you are so much better. Please stay in touch. Also, sometimes it seems that when I take advil it calms down on my butt ....I havent kept up with the advil but I think I will try that along with the olive oil Please stay in touch.
CommentTO KAT: My V area seems to be under control too, but my butt has been the biggest problem now. I too am irritated on the right side all the way up to the top of my crack. It is like a thin line of rash. I really don't know what this is and why I have had it for so long...quite irritating and it hurts throughout the day off and on.
CommentTO KDT YES!!!!!! That is exactly how it is with me, EXACTLY. My Dr. said there is nothing there whenever he examines me. I can't for the life of me understand what it is. Once in a while it will get a little red but not always. It also bothers me off and on and then at nite when I sit and watch tv. It also irritates me only sometimes, when my underwear rubs. Then sometimes it doesnt bother me at all. You described it the SAME as what i HAVE. What do you put on that area??
CommentTO KAT: I'm not sure what is going on in that area. I just know it bothers me more now than the vulvodynia does. Do you think it could be yeast growth? I have had this for months and nothing seems to help. It all came about a month or two after the V set in. Sometimes it itches up at the top for a little while and I know this is not a friendly topic to discuss but after BMs it seems to get irritated. Is that how you feel? And it gets so irritated it burns. When I look at it, I see a red line all the way to the top like someone took a sharpie and drew a line. Doctors have told me it is yeast and prescribed all sorts of things that have not worked. I thought it might be from the nerve causing the itching. I have put the olive oil on there to keep it from getting so itchy by keeping the area moistened. Thought about going to a derm. if this doesn't get resolved soon!
CommentTO KAT: I'm not sure what is going on in that area. I just know it bothers me more now than the vulvodynia does. Do you think it could be yeast growth? I have had this for months and nothing seems to help. It all came about a month or two after the V set in. Sometimes it itches up at the top for a little while and I know this is not a friendly topic to discuss but after BMs it seems to get irritated. Is that how you feel? And it gets so irritated it burns. When I look at it, I see a red line all the way to the top like someone took a sharpie and drew a line. Doctors have told me it is yeast and prescribed all sorts of things that have not worked. I thought it might be from the nerve causing the itching. I have put the olive oil on there to keep it from getting so itchy by keeping the area moistened. Thought about going to a derm. if this doesn't get resolved soon!
CommentTO KDT: Hello again, I don't get the red line as you described but it used to be all red when I first got it. Now I really dont see too much redness. I am going to a Derm. and he said there is nothing there and I have to agree with him. I do get some irritation with BM but thank GOD not itching. I use tucks pads (or equate Pads) all the time. I also use in the butt area and V A&D ointment, sometimes I break open a couple of vitamin E Capsules and apply that. It does seem to help. I find that the Butt gets irritated mostly when I sit for too long. I will wait to hear from you.!!!!
CommentHi Hopeful, I don't have anal itching,but you might benefit from a med like atarax (an antihistamine)- it helped me a lot one year when i had an unexplained bout of itchy hives. another med that has helped with itching a lot,is doxepin cream. I've used that on itchy bee stings and a rash once. You may want to see if you can get it compounded - not sure how it would feel inthe butt area. However, i do know that it's a med sometimes used for V- both topically and orally. /orally it will make you very sleepy tho. topically it was wonderful- took the itch away rather quickly! to monica- thanks for the info on neurontin- i'm taking something close to 1800mg -600 3 times a day. At first it made me sleepy, but i'm tolerating it better. I was on elavil before too but also had probs with the constipation, but it did help with the pain- was on 50mg. 100 sounds like a lot to me, but glad you can tolerate it and are doing so well! I may go back on the elavil if the neurontin doesnt work. HOw do you combat the constipation at that high dose of elavil? hi cassandra- do you have any side effects from the lyrica? I may try that next. gosh, you've been through a lot, but I'm glad you've found some relief from your med combo. I totally can relate to the frustration of not being able to talk to coworkers about this! ugh. well vent anytime you need. this is a safe friendly site and we're all here to listen empathize and help! I've certainly done my share of venting. Having a condition that no one has heard of is certainly challenging. Sometimes, I'm surprised at how well functioning i've been in the face of all this. Losing my boyfriend and my ability to sit, ride a bike, wear underwear- let alone sex- it's been very overwhelming. I know I have an inner strength- I'm starting to feel it. I think us single gals have it rough- trying to meet someone and date with this mess- hard to navigate that one. thank you to the ppl who have posted even after getting better. I find your posts inspiring as do many of us here. It helps us keep up our hope! if/when i get this under control, i vow to share my story with as many V sufferers as possible. No one should have to go through this alone, and I want to be able to offer some hope. if there is anything i can help with or if you just need to vent, feel free to email me! :) sending healing thoughts and prayers to you all!
CommentTO KDT; I don't know if you saw my post to you on 10/31 but I wanted to add one thing to that. I don't think the butt irritation is from yeast. I tried yeast medication and that did not help. The only thing that seems to help like i posted is the A & D ointment. Get baCK to me whenever you can. Hope things are a little better for you.
CommentHi Miriam - Thank you for your fast response. About the amitriptlyine my doctor started me off on 50 mg which didn't do a lot for me so she upped it to 100. I take at bedtime and it makes me sleep. I really don't know what it does for the pain as it is back in the morning. She wants to increase it to 150 mg but because of the constipation I don't want to do that. Like I told you I also take 1 mg of xanax 3 x daily which compounds my constipation. I am also on high blood pressure medicine. Honestly I would like to get off the xanax but from everything I read it is a next to impossible task. It has been a life saver for 20 yrs. but I don't want to increase it any more. Medications are a no win situation. I am retired now and after the holidays I am definitely going to try cutting back. I started on that for panic attacks. My doctor also mentioned Cymbalta. I am so afraid of the side affects of any drugs. I am so glad the neurontin is working for you. Do you get any side effects from the dose you are on. If one of those drugs would eventually cure this lousy pain and burning I would take it in a heart beat but having to take them over the long haul is what scares me. Oh! for my constipation I take Cleanse More that I get at the health store as well as 8 oz.of prune juice and flax seed powder. I take them twice a week and I get a pretty good cleaning out. I am praying for a cure one of these days. God Bless!
CommentHi Miriam - Thank you for your fast response. About the amitriptlyine my doctor started me off on 50 mg which didn't do a lot for me so she upped it to 100. I take at bedtime and it makes me sleep. I really don't know what it does for the pain as it is back in the morning. She wants to increase it to 150 mg but because of the constipation I don't want to do that. Like I told you I also take 1 mg of xanax 3 x daily which compounds my constipation. I am also on high blood pressure medicine. Honestly I would like to get off the xanax but from everything I read it is a next to impossible task. It has been a life saver for 20 yrs. but I don't want to increase it any more. Medications are a no win situation. I am retired now and after the holidays I am definitely going to try cutting back. I started on that for panic attacks. My doctor also mentioned Cymbalta. I am so afraid of the side affects of any drugs. I am so glad the neurontin is working for you. Do you get any side effects from the dose you are on. If one of those drugs would eventually cure this lousy pain and burning I would take it in a heart beat but having to take them over the long haul is what scares me. Oh! for my constipation I take Cleanse More that I get at the health store as well as 8 oz.of prune juice and flax seed powder. I take them twice a week and I get a pretty good cleaning out. I am praying for a cure one of these days. God Bless!
CommentTo Monica--I am glad you have a medication that is a life saver for you--the Xanax. I think that is wonderful. Why are you thinking about going off of it then if you need it? That is crazy that you take the Elavil at night and wake up with the pain in the morning! Sounds like it is time to try a different medication! If you can tolerate Elavil which is know for many side effects since it is an older medication, you will probably do well with the newer medications, such as Cymbalta. There is also Effexor that is used for neuropathic pain too. Don't let worrying about the side effects keep you from trying a medication that may relieve your pain. I have learned this after six years of suffering with vulvodyina. Side effects probably will happen in the beginning but then they may go away. Do you use lidocaine too? To Miriam--Regarding the Lyrica side effects--Two years ago when I tried Lyrica for the two months, I had really bad stomach bloating for about three weeks. Also, I gained 8lbs on it. I honestly gained 4lbs overnight and then when I increased the dosage by 25mg, I gained another 4lbs instantly. It caused me to have nasal congestion. When I went up to the 75mg twice a day, it slowed down my metabolism a lot, and I was exhausted from morning to night. NOW though--I went back on it a couple of months ago and am on 50 mg twice a day and NO side effects except for some nasal congestion once in a while. I haven't gained any weight. If you do switch, start out on the 25mg. Back then, they gave me 50mg to start out on and it gave me a severe headache. They should have started be on the lowest dose to introduce my body to the med. I am glad I can talk to someone here. It is not a conversation you can just strike up with anyone! Thanks MIriam.
CommentTo Kat...I'm just not really sure what is causing the sporatic itching. Sometimes I am fine and then sometimes it will start out of no where. I wonder if it is the foods that I am eating. I am going to try watching what I eat again to see if maybe sugars or something is bringing my itching on. The neurotin seems to be doing well. I have finally have gotten myself up to 300mg a day (100mg X 3/day). I am doing better as far as the itching in the V area...things have calmed down there now if I could get the other end resolved :) I bought some baby powder to used to see if maybe helping with the moisture in that area would help with the itching. If you ever want to email me feel free to. It is sweetness2135769@yahoo.com.
CommentTo Kat...I'm just not really sure what is causing the sporatic itching. Sometimes I am fine and then sometimes it will start out of no where. I wonder if it is the foods that I am eating. I am going to try watching what I eat again to see if maybe sugars or something is bringing my itching on. The neurotin seems to be doing well. I have finally have gotten myself up to 300mg a day (100mg X 3/day). I am doing better as far as the itching in the V area...things have calmed down there now if I could get the other end resolved :) I bought some baby powder to used to see if maybe helping with the moisture in that area would help with the itching. If you ever want to email me feel free to. It is sweetness2135769@yahoo.com.
CommentTo Kat...I'm just not really sure what is causing the sporatic itching. Sometimes I am fine and then sometimes it will start out of no where. I wonder if it is the foods that I am eating. I am going to try watching what I eat again to see if maybe sugars or something is bringing my itching on. The neurotin seems to be doing well. I have finally have gotten myself up to 300mg a day (100mg X 3/day). I am doing better as far as the itching in the V area...things have calmed down there now if I could get the other end resolved :) I bought some baby powder to used to see if maybe helping with the moisture in that area would help with the itching. If you ever want to email me feel free to. It is sweetness2135769@yahoo.com.
CommentTo Kat...I'm just not really sure what is causing the sporatic itching. Sometimes I am fine and then sometimes it will start out of no where. I wonder if it is the foods that I am eating. I am going to try watching what I eat again to see if maybe sugars or something is bringing my itching on. The neurotin seems to be doing well. I have finally have gotten myself up to 300mg a day (100mg X 3/day). I am doing better as far as the itching in the V area...things have calmed down there now if I could get the other end resolved :) I bought some baby powder to used to see if maybe helping with the moisture in that area would help with the itching. If you ever want to email me feel free to. It is sweetness2135769@yahoo.com.
CommentTo Cassandra - Thanks for your response and you wonder why I want to get off xanax if it was a life saver. Well I have suffered from panic attacts since I was in High School. I have a type A personality and in college any grade less than an A was failing to me. I knew it was dumb but that is my makeup. I then went on to get married, have four kids and get a job that I loved but was very stressful. I had to constantly meet deadlines. The doctor prescribed a low dose of xanax. It really made life a lot easier. About 20 years ago I got this awful burning in my vulva. Later the pain came as well. The doctor had no idea what it was. Got tested for everything and every test always came back negative. Prescribed lots of strong antibiotics and creams for a long time. I started taking more xanax and it really did help. I could even go to the gym. About four years ago I noticed that the more I upped the xanax my pain and burning was also increasing. I am also a melanoma survivor thank God. Went through a rough year some time back. Parts of that year I don't even remember. I have a wonderful husband and four wonderful sons. The trouble is I have never told my sons about my problem. Never told my best friends or anybody at work. I was ashamed to tell anyone but my husband about my pain and burning. Its the problem I find with most of us on this website - the secrecy is worse than the disease. I am so happy that its finally getting at least some attention. Until I found this site earlier this year I thought I was the only one that had this problem. Although I am sorry for all of you that are suffering I was so happy to discover that I was not alone for all those years and that it ACTUALLY HAD A NAME. Its hard to believe how much stress left my body when I read some of the posts. Now I am going to different doctors that know something about vulvodynia. Between all of us on this site I am confident that one of us will hit the jackpot and we will all be cured. Now back to your question about why I want to get off of the xanax. For about two years now I keep losing my balance. I had an MRI and lots of other tests and they can't find anything. From my research on the long term use of xanax I am convinced that is what is causing it. I am so frustrated with doctors. They just keep renewing prescriptions and don't seem to care whether a person needs it or not. By now you are probably sorry you asked. The Elavil probably helps with the pain but since I am sleeping I don't know. When I first started taking it the pain was not there in the morning but after being on it for four years I have built up a tolerance to it and like the xanax I should increase the dose or try a different drug. That is what is so great about this website, we all have something in common. I feel like I know some of you. Must take my meds for the night so God Bless until we talk again.
CommentTo Cassandra - Thanks for your response and you wonder why I want to get off xanax if it was a life saver. Well I have suffered from panic attacts since I was in High School. I have a type A personality and in college any grade less than an A was failing to me. I knew it was dumb but that is my makeup. I then went on to get married, have four kids and get a job that I loved but was very stressful. I had to constantly meet deadlines. The doctor prescribed a low dose of xanax. It really made life a lot easier. About 20 years ago I got this awful burning in my vulva. Later the pain came as well. The doctor had no idea what it was. Got tested for everything and every test always came back negative. Prescribed lots of strong antibiotics and creams for a long time. I started taking more xanax and it really did help. I could even go to the gym. About four years ago I noticed that the more I upped the xanax my pain and burning was also increasing. I am also a melanoma survivor thank God. Went through a rough year some time back. Parts of that year I don't even remember. I have a wonderful husband and four wonderful sons. The trouble is I have never told my sons about my problem. Never told my best friends or anybody at work. I was ashamed to tell anyone but my husband about my pain and burning. Its the problem I find with most of us on this website - the secrecy is worse than the disease. I am so happy that its finally getting at least some attention. Until I found this site earlier this year I thought I was the only one that had this problem. Although I am sorry for all of you that are suffering I was so happy to discover that I was not alone for all those years and that it ACTUALLY HAD A NAME. Its hard to believe how much stress left my body when I read some of the posts. Now I am going to different doctors that know something about vulvodynia. Between all of us on this site I am confident that one of us will hit the jackpot and we will all be cured. Now back to your question about why I want to get off of the xanax. For about two years now I keep losing my balance. I had an MRI and lots of other tests and they can't find anything. From my research on the long term use of xanax I am convinced that is what is causing it. I am so frustrated with doctors. They just keep renewing prescriptions and don't seem to care whether a person needs it or not. By now you are probably sorry you asked. The Elavil probably helps with the pain but since I am sleeping I don't know. When I first started taking it the pain was not there in the morning but after being on it for four years I have built up a tolerance to it and like the xanax I should increase the dose or try a different drug. That is what is so great about this website, we all have something in common. I feel like I know some of you. Must take my meds for the night so God Bless until we talk again.
CommentTo Cassandra - Thanks for your response and you wonder why I want to get off xanax if it was a life saver. Well I have suffered from panic attacts since I was in High School. I have a type A personality and in college any grade less than an A was failing to me. I knew it was dumb but that is my makeup. I then went on to get married, have four kids and get a job that I loved but was very stressful. I had to constantly meet deadlines. The doctor prescribed a low dose of xanax. It really made life a lot easier. About 20 years ago I got this awful burning in my vulva. Later the pain came as well. The doctor had no idea what it was. Got tested for everything and every test always came back negative. Prescribed lots of strong antibiotics and creams for a long time. I started taking more xanax and it really did help. I could even go to the gym. About four years ago I noticed that the more I upped the xanax my pain and burning was also increasing. I am also a melanoma survivor thank God. Went through a rough year some time back. Parts of that year I don't even remember. I have a wonderful husband and four wonderful sons. The trouble is I have never told my sons about my problem. Never told my best friends or anybody at work. I was ashamed to tell anyone but my husband about my pain and burning. Its the problem I find with most of us on this website - the secrecy is worse than the disease. I am so happy that its finally getting at least some attention. Until I found this site earlier this year I thought I was the only one that had this problem. Although I am sorry for all of you that are suffering I was so happy to discover that I was not alone for all those years and that it ACTUALLY HAD A NAME. Its hard to believe how much stress left my body when I read some of the posts. Now I am going to different doctors that know something about vulvodynia. Between all of us on this site I am confident that one of us will hit the jackpot and we will all be cured. Now back to your question about why I want to get off of the xanax. For about two years now I keep losing my balance. I had an MRI and lots of other tests and they can't find anything. From my research on the long term use of xanax I am convinced that is what is causing it. I am so frustrated with doctors. They just keep renewing prescriptions and don't seem to care whether a person needs it or not. By now you are probably sorry you asked. The Elavil probably helps with the pain but since I am sleeping I don't know. When I first started taking it the pain was not there in the morning but after being on it for four years I have built up a tolerance to it and like the xanax I should increase the dose or try a different drug. That is what is so great about this website, we all have something in common. I feel like I know some of you. Must take my meds for the night so God Bless until we talk again.
CommentREPLY TO MONICA.. I read your post and certainly like all of us you have been thru hell. I was wondering were you given a specific diag. beside vulvodynia. There are a lot of conditions that fall under that category. I have lichen scelorsus and mostly have it under some control. There are other diag. also like lichen planus, vestibulites etc. TO KDT I will be e mailing you as soon as I get my own personal computer. right now I am sharing...
CommentTo Monica--I understand now why you are thinking you need to wean off the Xanax. Since all the tests have been negative, I would go with your gut instinct and your own research, if you believe it is causing the balance problem, it probably is. I understand now too what you are saying about the Elavil. Yeah, maybe you built up a tolerace to it since it is not working anymore really. If you tolerate the drug well, maybe the dosage increase would be in your best interest. I have had vulvodynia for six years. I use to be so opposed to medications. In fact I never even took a medication besides Advil before this all came about. Now, I have a new view on things. I really feel I will have this problem for the rest of my life, and so it is the survival of the fittest. If there is a medication that will enable me to get through the day with less pain and help my mind set with it all, then I say prescribe it to me. Without med., I cannot work very well because I hurt too much to talk to people. I know what you mean too about the secrecy! No one in my family knows. I told a friend once and the only thing she said was have you seen a psychiatrist! I told another friend but I didn't use the term vulvodynia, just told her pain in the pelvic area. She doesn't even really understant either. She told me if I get a message, maybe it will relieve stress and take it away! Then there are the doctors. This one doctor I saw at a vulvar clinic told me that it is nothing life threatening, and I was thinking, okay, is this suppose to be soothing? Um, excuse me, it is actually life threatening for someone that may want to take their life over it. I will have to tell you my experience with doctors another time when I have time to type a few paragraphs! I will talk more later and please feel free to e-mail if you need to talk or vent. Monica, have you tried lidocaine, though? Over time, it desensitizes the nerve endings, it calms them down for good. The 5% works the best. So, good luck with the medicines. Not sure if you know but--Lyrica, Neurontin, Cymbalta, Effexor, Paxil, are some of the other medicines use to treat nerve pain.
CommentTO CASSANDRA; I read your post to Monica. I am interested in your lidocaine comment. I would like to know how that would work as far as deading the nerve endings for good. I have my V under control but I get some weird irritation on the insde of my butt cheecks. Sometimes it gets a little red but sometimes nothing is there but it still burns. I was diag. with lichen scelrosus and now am down to 2x a week with clobetasol and 2x a week estrace and I have been under control for quite sometime but dr, says there is no LS on the butt, I am interested in the lidocaine as far as the nerve endings. I will be looking for your response. KAT
CommentI am a physical therapists specializing in women's health. I have over 11 years of experience with women's health particularly in pelvic floor dsyfunction.
CommentI can only use the lidocane 2% gel the 5% really burns me worse then ever anyone else experience this?
CommentI've been reading the comments about taking Elavil. Some are concerned about taking a large dosage. I take 125 mg at night for insomnia. I started out with 5 mg years ago and I've had to increase the dosage over the years.. My doctor said I can take as much as 150 mg at night. The Elavil has not affected my pain. But for those for whom the Elavil has helped control pain, I would suggest talking with your doctor about possibly increasing the dosage.
CommentI've been reading the comments about taking Elavil. Some are concerned about taking a large dosage. I take 125 mg at night for insomnia. I started out with 5 mg years ago and I've had to increase the dosage over the years.. My doctor said I can take as much as 150 mg at night. The Elavil has not affected my pain. But for those for whom the Elavil has helped control pain, I would suggest talking with your doctor about possibly increasing the dosage.
CommentTO CASSANDRA, Hello again, I was interested in the lidocaine you spoke to Miriam about. I have irritation inside toward groin of my butt my V has been under control. I wll wait for your response.
CommentTO LAURA; Do you use the lidocaine on the skin of your V or your butt?
Commentto KAT. hello. Liidocaine is the first line defense for vulvodynia as far as topical treatment is concerned. I have to carry lidocaine with me all day every day. I sit all day at work so you can imagine why I need it. I would actually panic if I forgot it one day! Lidocaine at the pharmacy comes in 2% jelly. I cannot use this because I am allergic to the base. The 5% tube is a water base. I can use this. My dr 4 yrs ago prescribed me a compounded base of lidocaine 1%/Ibuprofen 2%. The compounding pharmacy makes this for me in a plasticized base. They can also do it in a petrolatum base. I like the plasticized base the best because it stays on my skin. The petrolatum and the water base leak through my undergarmet. I really appreciate though the 5% for severe pain when nothing else helps. It really works and numbs my skin for an hour and a 1/2 usually. I prefer to use the less amount of lidocaine, the 1%, when I can get away with it because it is less "awakening" the nerve endings have to do when it wears off. Overtime, meaning like years, with chronic lidocaine use, it has the potential to desensitize the nerve endings some or calm them down some because of the numbing action of the lidocaine. At this vulvar clinic I went to, they actually wanted me to use 5% lidocaine every day every 2hrs. I didn't want to do that though. I noticed some calming down of the nerve endings after using it chronically for two years--the 1% I used. The problem I face with lidocaine is that I could never use it as a sole medication because it WEARS OFF. When I first started using it four years ago,, it would wear off in ten minutes most of the time, and leave me very frustrated. Now I used oral nerve pain med and I use a dab of lidocaine in the vaginal opening and on labia minora after I urinate (only have to do this when I have been sitting and then need to urinate). The lidocaine shuts up those nerve endings at that time and actually gives me extended relief. You learn what works for you with lidocaine it seems. I learned when to use it and what to expect from it. I love the 5% and use it once in a while when I feel I really need it. I just wipe off the water on my skin from the base the lidocaine is in and it numbs the skin beautifully!. I have noticed that when the lidocaine is not working and when the nerve pain med is not working, the area is inflamed. The I use a tiny bit of Lidex, a steroidal ointment, that helps the inflammation thank God. So, I think lidocaine would be worth a shot for you to try. I am glad your lichen sclerosus is under control! Oh--please note that when you use lidocaine it always burns the skin initially, just for like a couple of minutes. It seems that is how I know I really need it from how much it is burning me. When I am not hurting and use lidocaine, I have noticed it does not burn. The burning of the lidocaine actually feels good to me because it is like soothing those nerve endings down. Well, I hope some of that info helped. One good remedy for this nerve pain stuff is ICE! Ice has brought my pain level down at times. Well, we have to all keep trucking along. I am glad I can talk about it here. I know I won't ever be cured and have to do what I can do every day to help myself--either sink or swim as the saying goes I guess.
CommentCassanda thank you for the response on the lidocane. I use the 2% gel vaginally I can't handle the 5% one it really burns but it may be the base like you said. It just goes to show we are all so different and we all will find different remedies or meds to help us heal. For me I use a compound cream, With neurotin, Elavil, and Clobatsal I also have the same compound with triamo instead of clobatsol which i know can thin the skin. Then I put lidocane over it it seems to help. My doctor put me on 10mg of singular which is suppose to help control the histime response in my body which control the burning and redness to the vagianlly are. Not sure if it works yet I have good days and bad days!
CommentCassanda thank you for the response on the lidocane. I use the 2% gel vaginally I can't handle the 5% one it really burns but it may be the base like you said. It just goes to show we are all so different and we all will find different remedies or meds to help us heal. For me I use a compound cream, With neurotin, Elavil, and Clobatsal I also have the same compound with triamo instead of clobatsol which i know can thin the skin. Then I put lidocane over it it seems to help. My doctor put me on 10mg of singular which is suppose to help control the histime response in my body which control the burning and redness to the vagianlly are. Not sure if it works yet I have good days and bad days!
CommentTo Laura: It is interesting you said that about the Singulair. After reasearching for years and based on my symptoms, I was thinking that one of my problems with the vulvodynia is histamine being realeased. Especially when nerve pain med does not work for that. The histamine release causes such extreme inflammation. It happens to me once in a while after urination where I feel histamine was released and the pain last for hours and it is so severe and will even travel up my back. I use some Lidex on my vulvar skin and lidocaine over that seems to help. I read that Vitamin C at 2,000mg dose I believe is a natural antihistamine. I got sick of taking vitamins though. I also read that the tricyclic antidepressant Elavil is an antihistamine too. I should ask my doctor about a rx for an antihistamine (not Benadryl because it knocks me out!). I think my dr will get tired of me asking for things though, but I will try it anyway. My gyn refuses to take care of it anymore, I have to get meds from my PCP! Let me know how the Singulair is helping you!
CommentSomeone on here was wondering about Cymbalta- just wanted to say it worked really well for me on the pain- but made me very hyper, but i think i was unusual in that aspect. Anyway, I think it's worth a try. So many ppl have done well on it. 60 mg is the minimal dose that works on pain. Just make sure you start with 20 mg and very gradually work up. ALSO I'm just going to say again that I have a blog and anyone can post a blog on this site. It's a good way to get out your frustrations, and if we can all flood the site with our blog, we can get this disorder out into the public eye and help each other. It's up to us, ladies- we must speak up and what better way than anonymously on a health site where we can feel safe and spread the word at the same time! :) ______________________________________________________________________________________________________ http://www.wellsphere.com/chronic-pain-article/vulvodynia-affects-18-of-females-but-the-media-is-relatively-silent-on-the-matter-many-doctors-are-unfamiliar-w-this-disease/846088
CommentTO MONICA- sorry I just realized that you asked me about neurontin. I worked up to 900 mg three times a day for a total of 2700 per day. I did get a bit woozy off of it and had to work up slowly, but it didnt seem to do anything for the pain. I definitely would have stayed on it if it helped; the side effects were minimal for me even at that high dosage. ______________________________ I am now back on Elavil- 50 mg, and it's helping like it did before when i took it. It takes the pain level down so that the pain is mainly with provocation- I'll take that! __________________ to Cassandra- it's very interesting what you say about singulair and elavil having antihistamine properties. Elavil definitely does- being an older antidepressant it hits a bunch of neurotransmitters too. I had a discussion with someone else with V who had a bout of unexplained hives for a whole year- this was many years before before the V started. I had the same thing- a year of hives- started as a mystery and left just as mysteriously years ago. So maybe there is something in V patients involving histamine- allergy? dang it- there needs to be more research on this- even if only epidemeological _____________________ I was on Atarax for the hives (worked great!); I wonder if that would help with V? _______________________ o arent we all just human guinea pigs with this thing? __________________________________________ has anyone else had unexplained skin rashes or hives? ____________________________________________
CommentMiriam....I was just wondering when you say you are having pain, can you describe where and how it feels? My pain feels like a stab in the vaginal entrance. I am suppose to start pelvic floor therapy soon so I hope that it is just something with the muscle tension possibly pressing on a nerve. I am currently taking Neurontin 300mg and at first it seemed like it was helping, but the last couple of days the pain has been more noticeable. I am not really having the vaginal irritation on the outside like I once was, although I do have some redness around the rectum and have red line all the way up to the top of my crack on the backside. Sometimes it will get a little itchy but doesn't last all day. I have started using vitamin E oil to see if that will help heal the skin in that area.
CommentCassandra- I know how you feel about asking you doctor for a million different thing. I am there too I am waiting for my GYN to give up on me. But he disease is SO POORLY understood they can't blame us sense most of the time everyone with the disease finds something different that helps. You shouldn't have a problem getting singular . I have been on it for a week so I not sure I am seeing differnce. Also on compound with Elavil/neurotin/clobatsol/ lidocane and pelvic floor therpy between the three something is helping. I have tried Elavil for three months no relief so I got off it and tried neurotin but that gave me TOO many side effects. But I have of heard A LOT ladies have excellent results with both Elavil and neurotin taken orally.
CommentHi Monica, My pain feels like burning or stinging and raw. Kind of like an open wound - it is confined to the vestibule. As long as there is nothing touching it at all, then there is no pain. Of course it's impossible to keep things from touching it all day. It is also very red on the vestibule. I'm sorry you're having stabbing pain. I guess I've only felt that after a gyn exam. Is your pain more internal? Let us know what happens with the Vitamin E. And I'm really sorry to hear the Neurontin has quit working- perhaps upping the dosage can help. Good luck with your PT appt!
CommentTO MIRIAM: Yes mine is more internal now. I used to have all the external irritation but now it is more central to the urethral area. I see a physical therapist for the first time tomorrow so I am expecting good results. Trying to be positive! The doc diagnosed it as pelvic floor myalgia, he also says it is mixed vulvodynia. I will post how that goes.
CommentHI KDT, I didn't know that vulvodynia could be mixed with internal pain. I know that when various gyns have examined me internally, I was fine- the pain is really localized to the vestibule. Pelvic floor myalgia sounds like something that definitely would respond to PT. Have you read Amy Stein's book about pelvic pain? I was thinking that it might have some good exercises for you in there- maybe your PT will know. wishing you the best at your appt!!!
CommentHey, I haven't posted here in a very long time, but I am one of the lucky ones who have completely gotten over vulvodynia through the help of an amazing physical therapist in Austin, Texas. She and I did a radio program on vulvodynia that you can hear on the internet. Her website is www.sullivanphysicaltherapy.com. Once there, click on the left hand corner on News and Media, then you'll see a link to "Issues for Your Tissues." There is a longish intro with music and then after that you can hear it. I hope it is helpful to someone, and it is great to actually hear a live voice of an expert on vulvodynia.
CommentVulvodynia help in Canada? Hi, I was diagnosed with vulvodynia about a month ago. Live in Edmonton Alberta and I haven't been able to find much help. I notice most of the people here are in the United States. If any of you know a good Doctor in Alberta, I'd really appreciate the tip. So far I'm doing the pelvic floor exercises (sort of helps) and have tried Cymbalta (does not help at all) I will try some of the other tips posted but it's really hard when your Doctor has never even heard of vulvodynia. One last question, were any of you diagnosed with IBS first. I was and it kinda seems like that started the whole thing - I wonder if they are linked.
CommentVulvodynia help in Canada? Hi, I was diagnosed with vulvodynia about a month ago. Live in Edmonton Alberta and I haven't been able to find much help. I notice most of the people here are in the United States. If any of you know a good Doctor in Alberta, I'd really appreciate the tip. So far I'm doing the pelvic floor exercises (sort of helps) and have tried Cymbalta (does not help at all) I will try some of the other tips posted but it's really hard when your Doctor has never even heard of vulvodynia. One last question, were any of you diagnosed with IBS first. I was and it kinda seems like that started the whole thing - I wonder if they are linked.
CommentAdrienne, I had IBS long before being diagnosed with Vulvodynia. I'm in the U.S. and the Drs. I've seen are just as clueless as the ones where you live.
CommentAdrienne, Stop doing keigel/pelvic floor exercises, you need to be doing stretches. I can send you a list of stretches my physical therapist gave me to do. Yes, there is a connection between vulvodynia and IBS...my PT treats both. IBS and vulvodynia are both caused by overly tight muscles. Your intestines don't work properly because they are being squeezed by muscles and the same muscles are pressing down on your vaginal nerve. Email me for the stretches! :)
CommentDoes anyone find that the week before their period vulvodynia is worse due to constipation or holding extra fluid? It seems that when I am constipated sometimes during the premenstrual time, it puts a tremendous amount of pressure on the nerves. My treatments do not even help. It causes a great deal of vaginal burning. I can hardly talk to people because the pain is so distracting. Lidocaine 5% helps numb the area for a couple of hours though, thank God. It is not so easy to say don't ever hold fluids or be constipated especially during the premenstrual time.
CommentSharon, I was diagnosed with IBS-C long before my vulvodynia, too. You are really lucky to have a PT who can help treat both IBS and V. Is there any chance you could e-mail me the stretches, too?
CommentSharon, I was diagnosed with IBS-C long before my vulvodynia, too. You are really lucky to have a PT who can help treat both IBS and V. Is there any chance you could e-mail me the stretches, too?
CommentHi Sharon - I am going to my 2nd PT now and her treatment is so different from the first one. I really like this one but after six sessions I honestly don't see much improvement except the exercises hurt like hell. I know people going throug phical therapy hurt a lot in the beginning but I am wondering when the pain from the exercises starts to ease up. I hope I am not asking too much of you to e-mail me the stretches you are doing so I can compare them with what I am doing. This is what is so great about this web site we get to know what works for other people. Thank you SO VERY MUCH. GOD BLESS!
CommentThanks for the tips everyone. Now I have something to bring to my doctor. Cassandra, sounds like the IBS/constipation thing is an issue for many of us. I have had IBS issues long before they new what IBS was, they get worse before my period. It's icky, but I start taking a glass of prune juice before bed every night a few days before my period starts. It helps. I find my pain is worse after my period because the "feminine hygeine" products irritate. Anyone found some that are vulvodynia friendly? Too bad were all so far away, we could start our own exercise group. Maybe make a video like Carmen Electra.
CommentThanks for the tips everyone. Now I have something to bring to my doctor. Cassandra, sounds like the IBS/constipation thing is an issue for many of us. I have had IBS issues long before they new what IBS was, they get worse before my period. It's icky, but I start taking a glass of prune juice before bed every night a few days before my period starts. It helps. I find my pain is worse after my period because the "feminine hygeine" products irritate. Anyone found some that are vulvodynia friendly? Too bad were all so far away, we could start our own exercise group. Maybe make a video like Carmen Electra.
CommentADRIENNE - Just wondering if you e-mailed Sharon for the stretch exercises she said you should be doing. I posted a request on the web site but knowing that people don't have time to check every day I decided to e-mail her at the address she gave. My e-mail came back to me saying that she did not have a yahoo.com account. Wondering if you tried. I might have done something wrong. I was real interested in what the stretches are.
CommentMonica, I did send an email but haven't gotten a reply. I've been searching the web to see if there's anything - no luck. I thought maybe the NVA would have something. I'm seeing my chiropractor this week and will ask him.
CommentIts been a while since I have been back on this site. I tried looking back at some of the postings but I can't find the member who has L S. If she is still on can you please let me know if you get outbreaks sometimes. I have been under control for many months and last night I use a non medicated cremem that I always use in between my steroid creme and I went on fire. I am so scared and upset and my dr. is away for a few weeks. Anything from anyone will help me. KAT
CommentTO SHARON - On your Nov. 13 post you told Adrienne to stop doing keigel/pelvic floor exercises and said she should do stretches instead. You said you would e-mail her the stretches on her request. She e-mailed you (per her Nov. 18 post) but had not heard back from you. I, like Arienne, go to a PT and am also doing pelvic floor exercises. Most of us on this web site are desperate for any info. that might help us. I am glad you found something that works for you. I would be so appreciative if you would e-mail the stretches to me. It just might make the holidays more tolerable for me. Thank you.
CommentOkay this is crazy but - I got a call from my doctor and my yeast infection is still there (after like 8 treatment of Diflucan). So, I got a little crazy and tried the apple cider vinegar spray. And last night and today I have been almost pain free. No I'm guessing it won't last, but I'll take it for now. Anyone have suggestions for the chronic yeast infection? My physio says the pain won't go away until that's gone, but nothing seems to kill it. I'm scared to try the boric acid. Has anyone used it? Did it work? How much does it hurt?
CommentOkay this is crazy but - I got a call from my doctor and my yeast infection is still there (after like 8 treatment of Diflucan). So, I got a little crazy and tried the apple cider vinegar spray. And last night and today I have been almost pain free. No I'm guessing it won't last, but I'll take it for now. Anyone have suggestions for the chronic yeast infection? My physio says the pain won't go away until that's gone, but nothing seems to kill it. I'm scared to try the boric acid. Has anyone used it? Did it work? How much does it hurt?
CommentI need a vulvodynia doctor in louisiana new orleans baton rouge metairie
CommentTo Adrienne--is it a vaginal yeast infection or is it a yeast infection that is deep in the vulvar tissue? I was just wondering because several years ago I had a biopsy of the labia and it revealed a fungus infection. I was treated with 500,000 IU of oral Nystatin for eight weeks. If it is the vaginal kind--maybe the strand of yeast you have is resistant to Diflucan. I heard that Terazol 3 cream works for more strands of yeast. I don't know anything about the boric acid. I am glad you felt better with the apple cider vinegar spray! Sometimes we are our own doctor, so I say whatever works for you, go for it!
CommentAdrienne: Vaginal yeast infection can only be in remission, but will never go away until you treat your "GUT" digestive tract for short. It is all the inbalance that causes it, like diet, birth control and too much antibiotics.
CommentHi. I saw Dr. David Foster in Rochester yesterday. I have cyclical burning. My burning starts on Day 10 of my cycle, I burn until my period, then it stops. Then the cycle starts over again!! It stops with the use of antifungals. but then starts up again when I stop using them. i can never culture positive for yeast though!! The Dr. will not treat me without a biopsy even though there are no changes to the skin. Any thoughts or experience on this???
CommentHi. I saw Dr. David Foster in Rochester yesterday. I have cyclical burning. My burning starts on Day 10 of my cycle, I burn until my period, then it stops. Then the cycle starts over again!! It stops with the use of antifungals. but then starts up again when I stop using them. i can never culture positive for yeast though!! The Dr. will not treat me without a biopsy even though there are no changes to the skin. Any thoughts or experience on this???
CommentHi. I saw Dr. David Foster in Rochester yesterday. I have cyclical burning. My burning starts on Day 10 of my cycle, I burn until my period, then it stops. Then the cycle starts over again!! It stops with the use of antifungals. but then starts up again when I stop using them. i can never culture positive for yeast though!! The Dr. will not treat me without a biopsy even though there are no changes to the skin. Any thoughts or experience on this???
CommentHi. I saw Dr. David Foster in Rochester yesterday. I have cyclical burning. My burning starts on Day 10 of my cycle, I burn until my period, then it stops. Then the cycle starts over again!! It stops with the use of antifungals. but then starts up again when I stop using them. i can never culture positive for yeast though!! The Dr. will not treat me without a biopsy even though there are no changes to the skin. Any thoughts or experience on this???
CommentAdrienne- I have used boric acid I have found it to be be very soothing dosen't hurt. It takes long then difflcun The recommend treatment is one capsule a night for two weeks. I started feeling better in few days. Have you doctor call then into a compound pharmacy the will put in capsules for you. You can also make them yourself get The OO capsules and boric acrd powder are your pharmacy.
Commentdoes anyone have lichen scelrosus9Spelling?) KAT
CommentThanks Laura, I'll give the boric acid a try. Did you find it actually helpd your pain once the yeast was gone? I'm still doing the physio, but it doesn't seem to make much difference. It seems my pain is much more linked to where I am in my cycle.Like having your period wasn't a pain before.
CommentAdrienne- Boric acid does wonders for yeast so if its the yeast causing your pain then I think it should do the trick! Boric acid is used when you become immue to other yeast remdies such as diffican and over the counter stuff. I have vulvadynia so I still have a burning around the vaginal opening and the vulva. I go to Pelvic floor therpy and find that it helps me the most my GYN has prescibes all sorts of meds and creams. The meds never work but some of the steriod creams and compounds help. I am going to a specilest in april in hopes the he can heal me completely if Physical therpy doesn't. I am a lot better then was when this all started my main issues now are burning pain after sex for days, excersing, and wearing jeans.
CommentThank Laura, I'll definately give it a try since my doctor says nothing will help the generalised vulvodynia until the infection is clear. And I'll stick with the physio, though I'm getting frustrated. I'm wierd though, I don't have the "tightness" many describe. In fact, during sex is fine, it burns after a bit, but not as bad as too much sitting, or taking the bus, or sometimes for absolutely no reason at all. Please keep me posted on the specialist, I hope they find a "cure" for you. Good Luck!
CommentAdrienne- Make sure to wear panty liner with the boric it can be messy but it just in the morning then its fine. I hope it clears up your vulvadynia. I had a lot of issues with sitting in the beginning the PT helped with that a lot. She said I prudual nerve issue + the vulvadynia. We are not working mostly with sexual issue She had me order a set diolators. They are suppose to help retrain the nerves not to be so sensitve to tough. I don't have tightness down there either. But sex burns me for days! I also hate that can't wear jeans. Gook Luck with the Boric let me know how it work for ya.
CommentAdrienne- Make sure to wear panty liner with the boric it can be messy but it just in the morning then its fine. I hope it clears up your vulvadynia. I had a lot of issues with sitting in the beginning the PT helped with that a lot. She said I prudual nerve issue + the vulvadynia. We are not working mostly with sexual issue She had me order a set diolators. They are suppose to help retrain the nerves not to be so sensitve to tough. I don't have tightness down there either. But sex burns me for days! I also hate that can't wear jeans. Gook Luck with the Boric let me know how it work for ya.
CommentAdrienne- Make sure to wear panty liner with the boric it can be messy but it just in the morning then its fine. I hope it clears up your vulvadynia. I had a lot of issues with sitting in the beginning the PT helped with that a lot. She said I prudual nerve issue + the vulvadynia. We are not working mostly with sexual issue She had me order a set diolators. They are suppose to help retrain the nerves not to be so sensitve to tough. I don't have tightness down there either. But sex burns me for days! I also hate that can't wear jeans. Gook Luck with the Boric let me know how it work for ya.
CommentCan anyone tell me where "Just Me" has been. I would like to know the name of her doctor who checks her for yeast spores. Her condition sounds just like mine.
CommentHas anyone ever used Instead --soft cup for their period? Tampons cause me pain and the pressure from the pad on my vulva kills me. I checked out www.softcup.com. Please let me know if you have used this product and what you think. Thank you!!
CommentHello, It may be that vulvodynia is linked to male circumcision. Kristen O'Hara's book "Sex as Nature Intended It" explains some of the pain that women experience because of the anatomy of circumcised intercourse. Any comments on this would be much appreciated. For more information on foreskin restoration, see Ron Low's TLC Tugger website or the National Organization of Restoring Men. Best wishes & take good care.
CommentHi 30yr old with vulvadynia/vulvavestibulitis for about 5yrs and have been 90% better for the past 3yrs. I saw a posting for someone looking for a Dr in the twin citites area Minnesota. I saw a wonderful phyical therapist in Minnesota who helped me get back to living after seeing 7drs and numerous tests. If you are still on the site please look into seeing Chris Lawrence with Centracare clinic in St Cloud Minnesota she was my life savior making me understand what was going on and unlike many dr's I had seen she reassured me it was nothing I did. I hope this information helps and I am so glad there are sites out there talking about this so that all women know this is not something that is just in your head it's real!!!
CommentHI EVERYBODY - I check this web site everynight before I go to bed and see that there is not much posting. This is a good thing as it shows that everyone is busy with the holidays and proves that vulvodynia in any of its ugly forms have not defeated us yet. I intend to enjoy the holidays (or least to pretend to). One or two glasses of wine wont hurt either. So on that note I wish everybody a MERRY CHRISTMAS OR HANAKKUH (sp) AND A HAPPY NEW YEAR and pray that 2010 will be the year where we find the cure for vulvodynia. GOD BLESS ALL OF YOU.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentI finally figured it out. I was subconsciously contracting my kegal muscles all the time. After I've learned to focus on relaxing this muscle I finally had relief after 2 years. I recommend focus on relaxing the muscle and slow yoga while relaxing this muscle.
CommentJenbaryn: I have been seeing a PT for a few months ago who has been helping me focus on relaxation, breathing techniques, dropping my pelvic floor muscles as well as doing stretches. I believe a lot of us get so tensed up from all of the daily stress that we don't realize the pain it can cause to our bodies. I have just now realized at my last PT visit that while talking to my therapist about something that was bothering me in my everyday life that i was tensing my buttock muscles and she was having to tell me to relax, so that is my goal this week is to concentrate more on relaxing those muscles. I have found much improvement with my pain and after going to nearly 10-12 doctors who never once mentioned my pain being muscle related this therapist is a blessing. I believe strongly that Physical Therapy can do wonders. God Bless!!! :)
CommentI am 27 years old and I have been dealing with vulvodynia/vulvar vestibulitis for the past 6 months. I have been treated for a UTI, yeast infection, and have had every swab and culture I know of with no positive results. I have been to several doctors and it was the 5th one I went to, a gynecologist, who finally took the pain I am experiencing seriously. Instead of giving me yet more creams and pills to try (the list is too long to type), he diagnosed vulvodynia (later added vulvar vestibulits) and referred me to a physical therapist. I have seen her 3 times so far to do pelvic floor stretching and exercises, which I also do at home. I have not really seen a difference yet, but am trying to remain hopeful. I think that my biggest issue is trying to deal with the reality of this situation. I am currently taking an antidepressent and it is helping, but sometimes it is such a struggle to wake up knowing that I have to endure another day of pain. I also feel guilty for not being able to have a sexual relationship with my husband at this point, even though he has been very supportive through this whole experience and has not put any pressure on me at all. If anyone has any suggestions, advice, or encouragement to share, it would be greatly appreciated.
CommentI am 27 years old and I have been dealing with vulvodynia/vulvar vestibulitis for the past 6 months. I have been treated for a UTI, yeast infection, and have had every swab and culture I know of with no positive results. I have been to several doctors and it was the 5th one I went to, a gynecologist, who finally took the pain I am experiencing seriously. Instead of giving me yet more creams and pills to try (the list is too long to type), he diagnosed vulvodynia (later added vulvar vestibulits) and referred me to a physical therapist. I have seen her 3 times so far to do pelvic floor stretching and exercises, which I also do at home. I have not really seen a difference yet, but am trying to remain hopeful. I think that my biggest issue is trying to deal with the reality of this situation. I am currently taking an antidepressent and it is helping, but sometimes it is such a struggle to wake up knowing that I have to endure another day of pain. I also feel guilty for not being able to have a sexual relationship with my husband at this point, even though he has been very supportive through this whole experience and has not put any pressure on me at all. If anyone has any suggestions, advice, or encouragement to share, it would be greatly appreciated.
CommentMelissa welcome to the guestbook! I have been through the same thing you are as many other ladies on this board. I have found pelvic floor therpy to be to most helpful. I am not completing cured but I am a lot better then I was. The pelvic floor therpy did take time to help at least a few months. So hang in there. If you would like you can E-mail me at lstonie@hfhs.org
CommentHi Melissa. I've had vulvodynia for six years. I completely understand about doctors not taking you seriously!! I am glad you found one that is now. I am wondering--what is the name of your antidepressant? I only know of three kinds that help this condition--Cymbalta, Effexor, and the tricyclics. I do believe other antidepressants though can help us make it through the day and raise our tolerance for the pain. I am fortunate not to have pain with intercourse, but I have pain afterwards on the vulvar skin for days. I would learn all you can about this condition on your own too, research as much as possible. There is also this website--www.nva.org that you may find helpful. I remember reading about this treatment to help with vulvar vestibulitis where a cotton ball soaked in 5% lidocaine and applied to the vestibule area overnight for months has helped some. I didn't know if you had heard of that. I actually did physical therapy for four months and found it helped extremely minimally but that is just me, it may help someone else tremendously Also, not sure if you are familiar, there are neuropathic pain meds--such as Neurontin or Lyrica that may help too.
CommentThanks all for the suggestions. Right now I am taking Lexapro as the antidepressent, which seems to be working out okay. I also take Neurontin 900 mg and Ambien CR every night. The Ambien is saving my life as I would not be able to sleep otherwise, but so far the Neurontin doesn't seem to be making any difference. The pysical therapist did say that my pelvic muscles are quite tight, so I guess that is why I am hoping that the therapy will improve things over time. I also have a muscle that spasms every 30 seconds or so but haven't been able to pinpoint exactly where. The muscle spasm came before the vestibulitis so maybe if the spasm gets worked out the other muscles will start to relax? That's what I'm hoping for anyway.
CommentHI TO ALL YOU FELLOW SUFFERERS - I just finished a 12 week session with my pelvic floor PT this morning and although she was the first person who really understood my problem she wasn't able to help me a lot. Doing the exercises at home gave me even more pain. I know the exercises should be spread out over the course of the day and not all at one time. Easier said than done. My muscles were relaxed and when she pressed on them I did not feel any pain. I am taking xanax (1 mg 3/daily) which helps me the most as well as 100 mg Elavil at bedtime. Because of its addictive nature I would love to wean myself off the xanax but life is so hectic there never is a good time to start. And of course nobody but my supportive husband know I take it. Even my best friend would not be able to understand my burning and painful vulva. Anyway my PT talked to me about going to a pain clinic and felt I would be a good candidate for what is called a Superior Hypogastric Nerve Block. I had already made an appointment to see a doctor there and I am scheduled to have the procedure done on Jan. 15th. Its an injection of a small amount of local anesthetic around the sympathetic nerves in the lower back used to diagnosis or treat abdominal and pelvic pain. My question to you all is has anyone heard of the procedure or ever had it done or has any doctor or PT recommended it as an option to prescribing pills which I find their long term side effects are worse than the vulvodynia. Please let me know if anyone had it done and did it help. God Bless!
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CommentTO MONICA - I haven't posted for quite a while as there has not been too much new in the line of a cure for vulvodynia. I feel like you about all the different meds our doctors give us to try. I am just sick of doctors. I feel they really think it is all in our heads so they see us for a few minutes and send us on our way with a new prescription which don't seem to do a heck of a lot for most of us. The last dr. I saw spent a whole 8 min. with me and this was my first visit to him. He handed me a prescription and when I picked it up at the pharmacy she told me that I would lose weight taking it. I probably could afford to lose a few pounds after the holidays but dam it I am looking for a med that helps chronic vulvar pain. Anyway I am extremely interested in what your PT thought would be worth a try - the superior hypogastric nerve block. I did a little research on line and learned how it is different from the pudendal nerve block. It targets a different bunch of nerves. My PT also told me that the pudendal nerve was not my problem. I was hoping that you would get a post from someone who knew something about it or better still had it done. I will ask my PT about it later this week. There just has to be something other than antidepressants. I am so glad that there are ladies out there you who want to pass on any knew info. Please post again after you have the procedure done and I pray it will be leave you pain free. Thanks again Monica. If anyone else out there that know anything about this procedure please let us know. Only if information is passed on can we find a cure for vulvodynia and I hope 2010 is the year.
CommentTO MONICA - I haven't posted for quite a while as there has not been too much new in the line of a cure for vulvodynia. I feel like you about all the different meds our doctors give us to try. I am just sick of doctors. I feel they really think it is all in our heads so they see us for a few minutes and send us on our way with a new prescription which don't seem to do a heck of a lot for most of us. The last dr. I saw spent a whole 8 min. with me and this was my first visit to him. He handed me a prescription and when I picked it up at the pharmacy she told me that I would lose weight taking it. I probably could afford to lose a few pounds after the holidays but dam it I am looking for a med that helps chronic vulvar pain. Anyway I am extremely interested in what your PT thought would be worth a try - the superior hypogastric nerve block. I did a little research on line and learned how it is different from the pudendal nerve block. It targets a different bunch of nerves. My PT also told me that the pudendal nerve was not my problem. I was hoping that you would get a post from someone who knew something about it or better still had it done. I will ask my PT about it later this week. There just has to be something other than antidepressants. I am so glad that there are ladies out there you who want to pass on any knew info. Please post again after you have the procedure done and I pray it will be leave you pain free. Thanks again Monica. If anyone else out there that know anything about this procedure please let us know. Only if information is passed on can we find a cure for vulvodynia and I hope 2010 is the year.
CommentHi everyone, Monica, I'd be really interested in hearing the results of the Superior Hypogastric Nerve Block as well. My physio and chiropractor are pretty sure my issues are a nerve gone wrong since when I have a really bad day I can feel a weird zinging all the way down to my toe. But, my doctor says it's not my pudendal nerve. My goal right now is to get my Dr. to refer me at an actual pain clinic or neurologist - why are doctors so hesitant to refer? Another question, anyone got an opinion on Lyrica versus Neurontin. I'm on 75mg Lyrica and no help. Maybe I need a higher dose? Smiles, Adrienne
CommentHi Adrienne, I will be more than glad to post the results of the Superior Hypogastric Nerve Block. I wasn't referred to the pain clinic by any of the many specialist I have seen. It was my PT that told me that it wasn't my pudendal nerve that was my problem. She thought that this hypogastric nerve block might help me. She recommended a pain clinic that had a good reputation. I called the pain clinic and just gave the doctor's name that had sent me to the PT. I saw the dr. at the pain clinic and he scheduled me for the nerve block. I think most big hospitals have pain clinics. What really surprised me was how many patients were waiting to be seen and I didn't even know that hospitals had pain clinics. They also take insurance if the clinic is in a hospital. I am not sure about other clinics. I, like you, don't have any real pain during sex but it hurts like hell for a day or two afterwards. My real bad pain is in the pubic area and burning in the vulva. I have no problem sitting but when I stand for any length of time I have to hold on to something to keep from falling. I was on 400 mg of neurontin for a while but it did nothing. If this doesn't work I am going to see a hypnotist (sp). Since modern medicine can't help me I am going the Chinese route. My PT was not very optimistic but very honest and simply said that vulvodynia can't be cured until they know what is causing it. There is so little research done on it. I know, for me, I can feel a trigger point that feels like a tiny tear in there that is causing my problem. I believe that all I need is to have a small portion of skin cut out and some new skin grafted. What can be so difficult about that. I have had 2 ultrasounds down there and they showed nothing. I firmy believe that doctors have no idea of the chronic pain we are enduring. They are too busy worrying about men's 4 hour erections. Please keep me in your prayers.
CommentI am new to this site - have V self-diagnosed. I am going to cut out a lot of yeast-positive eats from my diet and see if that helps. Worried about doing too much Estrace Cream down there since I take Estradiol orally each night. Seeing my urologist this Friday (I have interstitial cystitis) and I bet I know more about this V problem than she does!
CommentHi Anne: I use Estrace cream, but don't take oral estrogen. I noticed something interesting today. After exercising, I had some burning and my left groin area felt and still feels very sore. I massaged it on the outside and the burning subsided. So, I think that part of my problem is muscular and part is hormonal. My hormone levels are very low. My Urologist didn't know squat about Vulvodynia til I gave him some info on it. Of course I'm his only patient with it. He had never even heard of Vulvodynia. I'm so sick of knowing way more than the so-called experts about Vulvodynia.
CommentI am new to this website also. I am 32 years old and I was just diagnosed with vulvodynia in Dec. I only started having symptoms in Sept. and I thought it was a bacterial infection or a UTI. My Dr. started me on Elavil 10mg. and then told me 2 gradually up my dose. Once I started taking 20mg I was so tired all day long, even though I took it at night. So I went back to 10mg and I am not as tired. I'm still not sure if it's helping becuase I have had a couple flare ups. Do the flare ups go away if the meds are working? Or do you always have flare ups even when your taking meds? I also heard that you need to be on the meds for at least a month before they start 2 work. The other medication my Dr. suggested taking was neurontin. Has anyone had good results with this medication? I am still learning everyday new things about vulvodynia, I am just so overwhelmed. Thanks for any help or advice.
CommentI am new to this website also. I am 32 years old and I was just diagnosed with vulvodynia in Dec. I only started having symptoms in Sept. and I thought it was a bacterial infection or a UTI. My Dr. started me on Elavil 10mg. and then told me 2 gradually up my dose. Once I started taking 20mg I was so tired all day long, even though I took it at night. So I went back to 10mg and I am not as tired. I'm still not sure if it's helping becuase I have had a couple flare ups. Do the flare ups go away if the meds are working? Or do you always have flare ups even when your taking meds? I also heard that you need to be on the meds for at least a month before they start 2 work. The other medication my Dr. suggested taking was neurontin. Has anyone had good results with this medication? I am still learning everyday new things about vulvodynia, I am just so overwhelmed. Thanks for any help or advice.
CommentI am new to this website also. I am 32 years old and I was just diagnosed with vulvodynia in Dec. I only started having symptoms in Sept. and I thought it was a bacterial infection or a UTI. My Dr. started me on Elavil 10mg. and then told me 2 gradually up my dose. Once I started taking 20mg I was so tired all day long, even though I took it at night. So I went back to 10mg and I am not as tired. I'm still not sure if it's helping becuase I have had a couple flare ups. Do the flare ups go away if the meds are working? Or do you always have flare ups even when your taking meds? I also heard that you need to be on the meds for at least a month before they start 2 work. The other medication my Dr. suggested taking was neurontin. Has anyone had good results with this medication? I am still learning everyday new things about vulvodynia, I am just so overwhelmed. Thanks for any help or advice.
CommentHi Jen, welcome to this web sit. I have been getting a lot of good info. since I discovered it almost a year ago. It gave me a feeling of hope knowing I wasn't alone. I have been to a number of so called specialists during the past year and I think I should be sending them a bill for educating them about vulvodynia. Most of them never heard of it. They don't mind charging you for their lack of knowledge. Antipressants seem to be their answer to everything. Your dose of Elavil is very low. I take 100 mg of Elavil everynight and it gives me a good night's sleep. I have been taking it for 4 yrs. Since I am sleeping I don't know what it does for my pain. I also take 1 mg of xanax 3 x daily. It's been a life saver for me over the last several years but its got its side affects and intend to wean off of it one of these days. Its correct that it takes the Elavil a few weeks to fully get into your system and see its benefits. Likewise don't quit taking it cold turkey although your dose is so low it probably would not do you much harm. My neurologist took me off the Elavil some time ago amd put me on Neurontin. It did nothing for me so I took myself off of it and went back on the Elavil. If your meds are working I don't think you should be getting flare ups. As a new comer to the web site you should read as many posts as posssible. Meds that work for one person might not work for another. We are our own best doctor. Hope I have been of some help. Good luck and keep trying.
CommentHi Jen, welcome to this web sit. I have been getting a lot of good info. since I discovered it almost a year ago. It gave me a feeling of hope knowing I wasn't alone. I have been to a number of so called specialists during the past year and I think I should be sending them a bill for educating them about vulvodynia. Most of them never heard of it. They don't mind charging you for their lack of knowledge. Antipressants seem to be their answer to everything. Your dose of Elavil is very low. I take 100 mg of Elavil everynight and it gives me a good night's sleep. I have been taking it for 4 yrs. Since I am sleeping I don't know what it does for my pain. I also take 1 mg of xanax 3 x daily. It's been a life saver for me over the last several years but its got its side affects and intend to wean off of it one of these days. Its correct that it takes the Elavil a few weeks to fully get into your system and see its benefits. Likewise don't quit taking it cold turkey although your dose is so low it probably would not do you much harm. My neurologist took me off the Elavil some time ago amd put me on Neurontin. It did nothing for me so I took myself off of it and went back on the Elavil. If your meds are working I don't think you should be getting flare ups. As a new comer to the web site you should read as many posts as posssible. Meds that work for one person might not work for another. We are our own best doctor. Hope I have been of some help. Good luck and keep trying.
CommentHi Jen, and welcome. I haven't tried Elavil but I've tried Cymbalta and have no been on Lyrica for about a month. The Cymbalta hasn't helped my pain, but it keeps me from being a complete emothinal wreck about this. So far all the Lyrica has done is added about 10 pounds. I can't comment on the flare up because I've yet to have an extended period of pain free time since I was diagnosed 5 months ago.My next plan is to switch to nuerontin and start bugging my doctor to find a pain clinic that will try the nerve block shots. Monica, still keeping my fingers crossed for you and the shots.
CommentTO SUE: I read your post of 1/6/ and I also have irritation/pain on right side of Groin and sometimes when I meessage it it stops. I have something called likens Scelrosis (spelling) and use Estrace and a cortisone creme. I even get irritation near my but (YUCK) Do You use estrace only? and how often if you don't mind I would appreciate some info. Carol
CommentHi Monica. Thanks so much for responding to my entry. I feel the same way you do about this website. Its nice to talk to someone who understands what your going through. You said that you are taking 100mg of Elavil, does that make you tired the next day? I am going to stay on Elavil and gradually up the mg. until I see my Dr. next month. I have to give it more time to see if its going to work. It's been about 5 wks. since I started taking it. I have another question for you. Did you gain weight from the Elavil? I know that weight gain was listed as one of the side affects. Good Luck to you too and thanks again!
CommentHi Adrienne. Thank you so much for responding to my entry too. I hope the Neurontin gives you some relief. That's what is so hard about them not having a cure for Vulvodynia. All we can do is keep trying different meds until one of them works. Like Monica said, different meds work for different people. The bad thing about that is that you usually have to take them for a while before you can see if it's the right med for you. You also have to deal with the side affects which are almost always negative. I am curious to see if the nerve block shots work for you. Best of luck and thanks again!
CommentSorry. I hit the send button before I was done yet again. Has anyone heard of Sea Buckthorn Oil? I bought some online, but haven't tried it yet b/c it stains. I need to buy some pantiliners. Today, I feel irritated again on the left side. I may take an Aveeno bath in awhile. My Lichen Sclerosis is in remission with the weekly use of Clobetasol ointment, but it's been replaced by Vestibulitis and generalized Vulvodynia. I'd love to have a day when I don't think about my crotch.
CommentMy other message didn't post. I apply a pea sized amount of Estrace cream twice a day and sometimes emu oil for dryness and burning. Since I also have L.S. (in remission), I apply Clobetasol ointment once weekly unless I'm having a bad flare and then I'll use it for several days in a row. My L.S. has been replaced by Vestibulitis and generalized Vulvodynia. Lucky me. I've also had irritation in my butt crack.
CommentTO SUE from CAROL, unbelievable.....it sounds like the same thing I have. The name you typed in L S I am sure now that is what the Dr. said I have. I tried premarin but that didnt help. I looked at the tube of cortisone I use and it is the same as You use AND also The Estrace. I use that once a week topically and the tube has lasted me at least 4 months so I dont use a lot. The cortisone however, I do use it more often. MY obg and dermatalogist said The condition is under control but I still get flare ups and my butt also. Sounds like we are in the same boat. I know how you feel about being sick of thinking about it everyday. I am too!!!! Im so tired of talking to family and friends I dont even mention it much. I do have some good days but not enough....Please stay in touch. Carol
CommentWith all the disinformation and bad advice about treating Vulvodynia on the Internet - it's refreshing to find a very good source of information. Keep up the good Work!
CommentHi Carol: If you'd like to chat by email, feel free to contact me at sdsue123@san.rr.com.
CommentHi Jen, my dr. started me on 50 mg of Elavil and that realy did not do anything for me. On my following vist to her she upped it to 100 mg and that was 4 yrs. ago. She told me that it was OK to take my xanax as well. I must say for a long time I had a hard time getting up at 5:30 every morning. I just did not let myself go back to sleep, got up and took my shower, eat some breakfast and by 8:00 I felt fine. During all of this time I took 1 mg of xanax 3 x daily. My system has gotten used to it. I recently retired and am more relaxed now as I had a high stress job. I would like to wean off the xanax. Now that I am retired I have more time to experent with other ways of coping with pain. As you may have read in one of my recent posts I am scheduled to have a superior hypogastric nerve block done on the 15th at a pain clinic. I am really nervous about it and trying to be optimistic at the same time. I have this pain for 18 yrs. and only my husband knows how much I suffer. I am praying it helps me. Its done on a outpatient basis. Your question about if I gained weight - I can honestly say maybe 10 lbs. and can't really blame the Elavil. I would say its more from lack of exercise than food. If I use the threadmill or work out in any way I hurt for days. I miss that part a lot. I just finished my session with my PT and the stretches she wanted me to do hurt like hell. I try to eat healthy most of the time especially when my husband is around (he is a health nut). They have cake or doughnuts at the beauty shop for me every Saturday. Must have some fun in life - right? Anyway I would ask your dr. to up the Elavil for you. A friend of mine takes 150 mg every night for a different issue. Please keep me in your prayers.
CommentHi Jen, my dr. started me on 50 mg of Elavil and that realy did not do anything for me. On my following vist to her she upped it to 100 mg and that was 4 yrs. ago. She told me that it was OK to take my xanax as well. I must say for a long time I had a hard time getting up at 5:30 every morning. I just did not let myself go back to sleep, got up and took my shower, eat some breakfast and by 8:00 I felt fine. During all of this time I took 1 mg of xanax 3 x daily. My system has gotten used to it. I recently retired and am more relaxed now as I had a high stress job. I would like to wean off the xanax. Now that I am retired I have more time to experent with other ways of coping with pain. As you may have read in one of my recent posts I am scheduled to have a superior hypogastric nerve block done on the 15th at a pain clinic. I am really nervous about it and trying to be optimistic at the same time. I have this pain for 18 yrs. and only my husband knows how much I suffer. I am praying it helps me. Its done on a outpatient basis. Your question about if I gained weight - I can honestly say maybe 10 lbs. and can't really blame the Elavil. I would say its more from lack of exercise than food. If I use the threadmill or work out in any way I hurt for days. I miss that part a lot. I just finished my session with my PT and the stretches she wanted me to do hurt like hell. I try to eat healthy most of the time especially when my husband is around (he is a health nut). They have cake or doughnuts at the beauty shop for me every Saturday. Must have some fun in life - right? Anyway I would ask your dr. to up the Elavil for you. A friend of mine takes 150 mg every night for a different issue. Please keep me in your prayers.
CommentHi Jen, my dr. started me on 50 mg of Elavil and that realy did not do anything for me. On my following vist to her she upped it to 100 mg and that was 4 yrs. ago. She told me that it was OK to take my xanax as well. I must say for a long time I had a hard time getting up at 5:30 every morning. I just did not let myself go back to sleep, got up and took my shower, eat some breakfast and by 8:00 I felt fine. During all of this time I took 1 mg of xanax 3 x daily. My system has gotten used to it. I recently retired and am more relaxed now as I had a high stress job. I would like to wean off the xanax. Now that I am retired I have more time to experent with other ways of coping with pain. As you may have read in one of my recent posts I am scheduled to have a superior hypogastric nerve block done on the 15th at a pain clinic. I am really nervous about it and trying to be optimistic at the same time. I have this pain for 18 yrs. and only my husband knows how much I suffer. I am praying it helps me. Its done on a outpatient basis. Your question about if I gained weight - I can honestly say maybe 10 lbs. and can't really blame the Elavil. I would say its more from lack of exercise than food. If I use the threadmill or work out in any way I hurt for days. I miss that part a lot. I just finished my session with my PT and the stretches she wanted me to do hurt like hell. I try to eat healthy most of the time especially when my husband is around (he is a health nut). They have cake or doughnuts at the beauty shop for me every Saturday. Must have some fun in life - right? Anyway I would ask your dr. to up the Elavil for you. A friend of mine takes 150 mg every night for a different issue. Please keep me in your prayers.
CommentTO SUE from CAROL...Hi Sue, I would love to e mail you personnaly but my computer crashed...now I am using my daughter just to research and now since I found this site. I lost my job and right now can't get a computer of my own. I hope we can still chat on this site. Please let me know how you feel about that. Carol
CommentTO SUE from CAROL...Hi Sue, I would love to e mail you personnaly but my computer crashed...now I am using my daughter just to research and now since I found this site. I lost my job and right now can't get a computer of my own. I hope we can still chat on this site. Please let me know how you feel about that. Carol
CommentHey Monica. That's so nice that you are retired. I am blessed to be a stay at home mother but I can't imagine having to work outside of the home with the pain. I've read that some women have to take a leave of absence or go on disability. I understand why they have to do that, but without having Vulvodynia you couldn't understand the strain it puts on your everyday life. I am sorry that you have been dealing with this for 18yrs. I pray that I don't have to suffer that long before they find a cure. Best of Luck on the 15th. I hope that this will be the end of your suffering. I am anxious to hear how it goes. Try not to be nervous and just think that this is going to be it! You are in my prayers, and everyone who is suffering...please keep me in yours.
CommentI just wanted to let everyone know that I was on the NVA.org site today and saw that Dr. Oz is going to have a segment about Vulvodynia on tomorrow's show (Jan.11th). He will also interview two Vulvodynia sufferers. They also ask that after the show you send an email to Dr. Oz and the producers to thank them for the coverage of this important women's pain condition, and to ask that they cover it again in the future. If you go on nva.org they have all of the website's listed.
CommentHi Carol: Sorry about your computer crashing and your job loss. I'm retired thank God. Sure, we can talk to each other on this site. How are you doing today? It's so weird how my left groin area feels sore, tingly and burning just like on the left side of my vulva. I sat on an icepack this morning and that helped. Keep in touch. I check this site everyday. Sue
CommentTO SUE from CAROL:: Thanks Sue...I ususally have irritation on myn right side of the groin and my butt too... How long have you had this? I am trying to back off of some of the cortisone, I would like to get to the point where i use each of them once a week only. I dont know if thats possible. I am going to watch Dr. Oz tomorrow morning.
CommentHi Carol: I started getting symptoms shortly after getting married. The L.S. went into remission for a few years, but then the pain returned and I was diagnosed with Vestibulitis. So, I've had vulvar pain for many years, but it's not as bad as it used to be when I had burning 24/7. I would just sit in the tub and cry. It's so hard to find a competent Dr. out here. Some Gyno's refuse to see Vulvodynia patients. I'll be watching Dr. Oz tomorrow too.
CommentTO SUEfrom Carol I have the Vulva burning under some control but my butt gets irritated and my Dr. said there is no skin disease in that area. I started to use A&D ointment and that helps somwhat. I watched Dr. OZ early morning and I was happy but not enough enough info. was given in my opinion. I sent him an e mail ...thanks to Jen another memeber she gave the site to e mail him and hopefully more shows in the future. PLEASE EVERYBODY E MAIL HIM
CommentTO SUEfrom Carol I have the Vulva burning under some control but my butt gets irritated and my Dr. said there is no skin disease in that area. I started to use A&D ointment and that helps somwhat. I watched Dr. OZ early morning and I was happy but not enough enough info. was given in my opinion. I sent him an e mail ...thanks to Jen another memeber she gave the site to e mail him and hopefully more shows in the future. PLEASE EVERYBODY E MAIL HIM
CommentDid anyone watch Dr. Oz this morning? It was on at 9 am here, but there wasn't a segment on Vulvodynia. It comes on again at 5 pm, so I'm hoping it will be on that show.
CommentHi Carol: Glad the A & D helps somewhat. I hope Dr. Oz's show this afternoon will have that segment on it.
CommentTO SUE FROM CAROL, The segment of Vulvodynia was about 15 minutes long. I heard it this morning..wish there was more to it...not enough info. I sent e mail to the web site that Jen posted yesterday
CommentTO SUE FROM CAROL, The segment of Vulvodynia was about 15 minutes long. I heard it this morning..wish there was more to it...not enough info. I sent e mail to the web site that Jen posted yesterday
CommentI had high hopes for Dr. Oz's spotlgiht on this on his show today--because he has looked beyond Western medicine before to alternative things. I was hoping he'd do women everywhere a favor and bring some of these things to light so everyone doens't have to suffer the available therapies that don't work for them! it'd be so much better to know the cuase and get rid of it, right? I did,, with a holistic Naturopath's help, and I was just so hoping that with Oz's platform and reputation, he might be able to REALLY help. At least he brought the issue to light though so women won't have to be told "it's in your head" anymore!
CommentI had high hopes for Dr. Oz's spotlgiht on this on his show today--because he has looked beyond Western medicine before to alternative things. I was hoping he'd do women everywhere a favor and bring some of these things to light so everyone doens't have to suffer the available therapies that don't work for them! it'd be so much better to know the cuase and get rid of it, right? I did,, with a holistic Naturopath's help, and I was just so hoping that with Oz's platform and reputation, he might be able to REALLY help. At least he brought the issue to light though so women won't have to be told "it's in your head" anymore!
CommentHey everyone! I watched the Dr. Oz show today too. I feel the same way alot you feel, that alot of the info. given was what alot of us already know. But like Renee said, I was glad he covered Vulvodynia for the women who don't know what's going on with them, so they now know that its not just in their head. Maybe now they can mention this to their Dr. so they can be diagnosed and hopefully get some relief and peace of mind. Before I was diagnosed, I never even knew Vulvodynia existed. I wish I would have seen this show in Sept. when I first started having symptoms. It would have saved me time, aggrevation, money i spent on co-pays to see gynes or all of the money I spent on rx's for things I never had, and for the over the counter meds I tried to get relief from. Hopefully alot of women watched the show today because I think every woman should know about this whether they have it or not. Take care!
CommentIf all of us go on NVA.org and send e mails to Dr. Oz maybe he will do more in the future. That is what the site asks women to do. I was really happy that he did this much...so I think he will do more if he get enough requests. I sent him an e mail to encourage more from him.
CommentI haven't written on here in a very long time. I just wanted to say two things: 1. My symptoms have been drastically reduced over the last year by takin 25 mg of nortriptyline per day, and going to a great physiotherapist every two weeks. I try to eat a low-sugar and low-gluten diet, and I use a detergent that is free and clear of all perfumes and dyes on my underwear. Additionally, I use only 100% organic cotton pads and tampons. I also use only organic body washes and check to make sure they do not contain propylene glycol, sulfates, or any parabens. I also read the book "The V Book" by Dr. Elizabeth G. Stuart, which really helped me pinpoint what my problem is and how to treat it. I just wanted to summarize these points in the hope that they could possibly help others. (By the way, the nortriptyline has given me minimal side effects apart from some gastrointestinal issues that are easily managed - absolutely no weight gain after 2 years). 2. The main reason I wanted to write was that Dr. Oz had a show today that contained a segment about vulvodynia!! It's amazing that it is in the cultural realm now to talk about this horrible condition. Of course, the show used the context of "When sex hurts" which, as we all know, is not the only problem associated with vulvodynia, but it's a great start in my opinion to getting the word out there about the issue. If you go to http://www.doctoroz.com/videos/monday-dr-oz you can watch the entire segment. I hope some of this information will be helpful. Thanks.
CommentI haven't written on here in a very long time. I just wanted to say two things: 1. My symptoms have been drastically reduced over the last year by takin 25 mg of nortriptyline per day, and going to a great physiotherapist every two weeks. I try to eat a low-sugar and low-gluten diet, and I use a detergent that is free and clear of all perfumes and dyes on my underwear. Additionally, I use only 100% organic cotton pads and tampons. I also use only organic body washes and check to make sure they do not contain propylene glycol, sulfates, or any parabens. I also read the book "The V Book" by Dr. Elizabeth G. Stuart, which really helped me pinpoint what my problem is and how to treat it. I just wanted to summarize these points in the hope that they could possibly help others. (By the way, the nortriptyline has given me minimal side effects apart from some gastrointestinal issues that are easily managed - absolutely no weight gain after 2 years). 2. The main reason I wanted to write was that Dr. Oz had a show today that contained a segment about vulvodynia!! It's amazing that it is in the cultural realm now to talk about this horrible condition. Of course, the show used the context of "When sex hurts" which, as we all know, is not the only problem associated with vulvodynia, but it's a great start in my opinion to getting the word out there about the issue. If you go to http://www.doctoroz.com/videos/monday-dr-oz you can watch the entire segment. I hope some of this information will be helpful. Thanks.
CommentTO AMBER, Hi..I also read the V book and I keep at my bedside when I get really anxious. I used cotton underwear and rinse them 2x after waashing. Mine, I believe is hormonal. I use 3 types of topicals and in the past 2 years my symptoms have subsided. What I wwould like to know is...are your symptoms gone completely or just under control to the point where it is bearable. I also saw Dr Oz and I agree with Carol we should e mail him which I will do tonite. Thanks
CommentTO SUE from CAROL.....Let me know what you think of Dr. Oz Show....
CommentTO SUE from CAROL.....Let me know what you think of Dr. Oz Show....
CommentTO SUE from CAROL.....Let me know what you think of Dr. Oz Show....
CommentHi Carol: The Vulvodynia segment was in Dr. Oz's 5 pm show. I'm glad I got to see it and thought it was very well done. I liked that he apologized for other Drs. who are unaware of Vulvodynia and those who tell us it's all in our heads. A few minutes ago, I sent an email to his show.
CommentDr. Oz just had a special on vulvodynia on his show earlier this evening. I hope you all watched. If not, you can go on to his web site www.drozshow.com I hope you all can watch the video on this site if any of you have missed it. Goodnight and pain free days to you all.
CommentDr. Oz just airled a special about vulvodynia on his show yesteday. I am so angry I missed it. But for anyone else who has missed it, you can log onto his website at www.drozshow.com you can catch a very long and informative article about it. There is only a 30 second video about it, but its not even a full video of what all they discussed on the show. all the other video topics are long. Anyways painfree days to us all
CommentTO SUE from CAROL I have my daughters computer for awhile tpday. I also sent Dr Oz an e mail that web site tells us too do that so in the future he could have more on it. How r u today.. I hope all is well. I have one question for u since you are in remission do you still get irritations or is that gone completely. Thanks so much
CommentTO SUE from CAROL I have my daughters computer for awhile tpday. I also sent Dr Oz an e mail that web site tells us too do that so in the future he could have more on it. How r u today.. I hope all is well. I have one question for u since you are in remission do you still get irritations or is that gone completely. Thanks so much
CommentHi EVERYONE - I watched Dr. Oz's segment on vulvodynia and although I didn't learn anything new I think it was a great first start and actually interviewing two women who had it was really great. I feel like its not an ugly secret anymore. I sent him an Email also and encouraged him to convince Oprah to do a segment before she gives up her show. Oprah, being a real good friend of Pres. Obama might find it in his heart to appropriate some of the trillions of dollars to the medical field for much needed research on the causes of vulvodynia. That bail out I could really handle. Eight million women in the U.S. is a lot of silent suffering.
CommentHi Carol: Yes I do still get irritation on my vulva. I'm also very dry and am postmenopausal. Hope your day hasn't been painful. Sue
CommentTO SUE from CAROL...Hi again, i wish i could scrape up some xtra money for a new computer...using my kid's really stinks. Yes,me too I get very dry and pinchy. I am trying to back off some of the steroid cream. I guess this will never go away.
CommentTO SUE from CAROL...Hi again, i wish i could scrape up some xtra money for a new computer...using my kid's really stinks. Yes,me too I get very dry and pinchy. I am trying to back off some of the steroid cream. I guess this will never go away.
CommentHi Carol: I wish you had your own computer too. But, it's OK that we correspond on here. Hopefully, we'll find a better treatment to help us. Sue
CommentI had a hysterectomy 2 years ago, and the pathology report found that what was thought to be a large fibroid in my uterus was actually a liposarcoma. I had to go back into surgery for interoperative radiation and removal of my cervix. Then I followed up with pelvic radiation. I have had pain during sex since then, and none of the creams and gels help to eliminate the pain. I just saw Dr. Oz's show on Volvodynia, and the symptoms sound like what I am experiencing. Has anyone had a similar experience; and do you have any ideas for relief. I have a fiance, and sex is important, but I am petrified whenever we get close. This is no way to live.
CommentI had a hysterectomy 2 years ago, and the pathology report found that what was thought to be a large fibroid in my uterus was actually a liposarcoma. I had to go back into surgery for interoperative radiation and removal of my cervix. Then I followed up with pelvic radiation. I have had pain during sex since then, and none of the creams and gels help to eliminate the pain. I just saw Dr. Oz's show on Volvodynia, and the symptoms sound like what I am experiencing. Has anyone had a similar experience; and do you have any ideas for relief. I have a fiance, and sex is important, but I am petrified whenever we get close. This is no way to live.
CommentI had a hysterectomy 2 years ago, and the pathology report found that what was thought to be a large fibroid in my uterus was actually a liposarcoma. I had to go back into surgery for interoperative radiation and removal of my cervix. Then I followed up with pelvic radiation. I have had pain during sex since then, and none of the creams and gels help to eliminate the pain. I just saw Dr. Oz's show on Volvodynia, and the symptoms sound like what I am experiencing. Has anyone had a similar experience; and do you have any ideas for relief. I have a fiance, and sex is important, but I am petrified whenever we get close. This is no way to live.
CommentI had a hysterectomy 2 years ago, and the pathology report found that what was thought to be a large fibroid in my uterus was actually a liposarcoma. I had to go back into surgery for interoperative radiation and removal of my cervix. Then I followed up with pelvic radiation. I have had pain during sex since then, and none of the creams and gels help to eliminate the pain. I just saw Dr. Oz's show on Volvodynia, and the symptoms sound like what I am experiencing. Has anyone had a similar experience; and do you have any ideas for relief. I have a fiance, and sex is important, but I am petrified whenever we get close. This is no way to live.
CommentTO SUE from CAROL..how are you doing sue. my day was good but nite time sitting in fron of tv irritates my butt more than anything right now. When I message the area it seems to help. I have no idea why and Dr. doesnt either. When I start to get upset about it it only makes it worse. Sounds like nerve endings or something...
Commenthello all
CommentHi Carol: I had Acupuncture this morning, so I feel pretty good at the moment, except for the weird feeling on the left side of my groin. I'm going to massage the area too and see if it helps like it did the other day. I'm also finally going to try the Seabuckthorn oil I bought recently. Here's hoping that we both have a relatively painfree weekend. Keep in touch. Sue
CommentTO SUE FROM CAROL; hi I am glad you had a good session. I have had better days and then again, I have had worse. I guess I will have to increase the cortisne creme. I don't know why I feel so irritaated the last few days. I know you said you still get irritation also even though your in remission. I want it to go away completely as I am sure all of us do.
CommentHi Carol: You could try over the counter cortisone ointment or cream and see if it's strong enough to give you relief. I massaged the left side earlier and the burning went away, thank God.
CommentHi Carol: You could try over the counter cortisone ointment or cream and see if it's strong enough to give you relief. I massaged the left side earlier and the burning went away, thank God.
CommentMONICA - I know you have your hypogastric nerve block shot today so you probably won't be checking the site. But, wanted to wish you the best of luck - I really hope it works for you. Keep us posted. As for myself, I FINALLY got a reference to a Doc that deals with pain, she's a urologist, but at least it's kinda in the right area. And only a 6 month waiting list - sheesh.
CommentI have had undiagnosed vestibulitis for over a year. It has progressed to a constant pain. This does not mean pain during intercourse. It means pain ALL the time. I was finally diagnosed a week ago and will undergo surgery to have it removed. I just want women who know nothing about this and only have symptoms to know that for some, pain does not only occur during penetration. It can occur constantly and prevent a woman from being able to have a normal life. I was taking 15 to 20 pain killers every day because no one could help me or tell me why I was in so much pain. This put stress on my relationship, my college shool life, and my work life. It has been a long, unbearable road and there should be more education available to women in pain.
CommentTO SUE from CAROL; THANKS for staying in touch with me. As I look back on some of these postings I truly beleive that you and I haave a very similar condition. My Dr. told me I have the LS under control and I do feel better than I did months ago. But when he reexamined me last month he said where I am having irritation shows no sign of LS it is more because of the aging process. I think I am going to try what u do and use a little estrace everyday instead of once or twice a week. If I start to spot I will know it is from the Estrace because I just went to OBG and all was well thank GOD. Thanks and please continue your advise to me
CommentHi Adrienne, Thanks for thinking of me on Friday. I had the hypogastric nerve block and when I was taken to the recovery room afterwards I woke up and then sat up and I said to my husband and the nurse that I felt great and had forgotten over the years what is was like to be pain free. The nurse old me not to get too excited as I was still under the effects of the anesthetic. She was right. As it wore off my pain returned. The dr. did not even come in to talk to me afterwards but he has me scheduled for another block on the 29th. For an hour I felt like I was in heaven. I have been doing a lot of research on pain blocks and it looks like they are not a permanent solution. I was hoping I would be the exception. It has left me bummed out.
CommentHi Adrienne, Thanks for thinking of me on Friday. I had the hypogastric nerve block and when I was taken to the recovery room afterwards I woke up and then sat up and I said to my husband and the nurse that I felt great and had forgotten over the years what is was like to be pain free. The nurse old me not to get too excited as I was still under the effects of the anesthetic. She was right. As it wore off my pain returned. The dr. did not even come in to talk to me afterwards but he has me scheduled for another block on the 29th. For an hour I felt like I was in heaven. I have been doing a lot of research on pain blocks and it looks like they are not a permanent solution. I was hoping I would be the exception. It has left me bummed out.
CommentHi Carol: I hope that using Estrace cream more often will help you. Yesterday, I applied the Sea Buckthorn oil topically and it seemed to soothe the skin, but it leaves an orange stain. Even though I wore underwear with a panti liner, I ruined my underwear. So, today I went to the health food store and bought some vitamin e suppositories by Carlson. I put one in a little while ago. It's supposed to help with dryness and irritation. It's cheaper to buy it online, but I wanted to start using them right away. If you don't mind my asking, are you post menopausal too? Hope you have a nice Sunday. Let me know how you're doing. Sue
CommentTO SUE from CAROL, Hi Sue, I dont' mind you asking any questions. Yes, I am postmeaopausal. I ruined my underwear also with the generic A&D ointment. Now I am using the original and it doesnt make my underwear orange. I have used the Carlson Vitamin E suppositories. They help at nite but did not help during the day. But that was last year when I hadn't been diag. or put on steroid or estrace. At that time nothing really helped me but this site. I have never posted before this month. I would read what everyone said and tried a lot of their advice. I dont understand why, if the my Dr told me the LS is under control, will I always have some type of irritation? Butt or Vulva? With you experience, what is your opinion? I also, have noticed in reading all older postings, you seem the one who is always trying to help people. Do the others give up or are they cured for good. Thanks so much. Sorry I cant afford my owne computer,
CommentHi Carol: I just peed and now am burning. So much for the vitamin e suppository helping. I may take an Aveeno bath or get the icepack out. I'm so tired of dealing with this. I know that I don't drink enough water, but lots of people don't and they're fine. I don't know why your Dr. told you that. Mine didn't. I don't mind talking to you on this site, so no worries if you don't have a computer. I'm happy to talk to you. I do try to help other women when I can. Thanks for saying that. Post again when you can. Sue
CommentTO SUE from CAROL Thanks SUE for talking with me. Mr. Dr. told me the LS is undercontrol. The White is gone is gone..and your Dr. told you your LS was undercontrol. So why the hell do we still have irritation. I cant stnad it. And we are using hormone creme also. What else are we suppposed to do. They don't know themselves. I guess antidepresents are what they will try to give us.
CommentHi Carol: Did your Dr. give you the Q-tip test to check for Vestibulitis? I almost flew off the table from the pain. So, I have Vulvar Vestibulitis, but my L.S. is under control. Yesterday, my burning only lasted a short time. There's no rhyme or reason to this. I felt very dry in front and back too. Today, I feel OK so far, but the day is still young. I've already tried Elavil and Lyrica and all I got out of both of them was bad side effects. I take Prozac for anxiety, but it doesn't help my vulvar pain any. I don't know what to think either. How are you doing today?
CommentTO SUE from CAROL I am so glad youf burning only lasted a short time. I am not doing too bad today either I still have the whole nite ahead. I really am not sure if she gave me the Q tip test but I can touch those areas myself with no pain. I dont know if that makes a difference or not. I use Zanax at nite to keep me calm. If u look at the shape of a toilet seat, shape of a U that is now were I get irritated, which is my butt and nowhere near my vulva. The Dr said there is nothing there either. Is that strange or what? I also notice I am feeling my best when I use the steroid creme on the vulva and U shape of my butt. I am sick of this. Now my husband had his hours cut back so there goes any chance of buying a computer.......
CommentHi Carol: I can touch my vestibule myself and not feel any pain, but somehow when the Dr. does the Q-tip test on me it hurts like hell. I'm due for a pelvic exam and pap and am not looking forward to either one b/c those things are very painful for me too. I'm sorry to hear your husbands hours were cut. It's always something, unfortunately. Don't worry about the computer. Talking on here is fine. Sue
CommentHi Adrienne, Just wanted to let you know I saw a urologist/gynecologist and she wasn't able to help me. I told her I had an appointment with a dr. at the pain clinic and she said I was going in the right direction. She then said that maybe hypnosis would help me. I have nothing against that profession but I walked away with the feeling that she thought my pain was all in my head. She even said she wondered why I was referred to a urologist. I just don't want you to wait around for 6 months (how outrageous a wait) to be told what I was told. Hope you have better results with yours. I can understand my GP not knowing about it but with all the so-called specialists not being able to help I really don't know where to go from here.
CommentMonica - I'm so sorry to hear the first shot didn't get rid of the pain. I'll keep praying for you - maybe twos a charm? How many did they say you'll have to go through. I agree, one of the worst parts of this is the up and down of hope as each new treatment fails. I'm skeptical about the uerologist too. But my PT says she has other vulvodynia patients so I'll try. What's one more doctor? Keep me posted - I'll be thinking about you. (Oh and feel free to email me anytime too) Good luck.
CommentTO SUE from CAROL, Hello again...Im in the dumper today. How are you doing??? I hope hope good.
CommentHi Carol: I'm sorry you're not doing well today. I just got up a little while ago. So far, I'm alright, but as all know, that can change in an instant. I hope you find some relief today. Sue
CommentTO SUE from CAROL, I really appreciate your posts to me. It is not the best way but without my own computer I have no choice. Now with my husband getting hours cut back..well there goes that hope for now. I am glad you are doing good so far, and yes, I find when I first get up things are pretty good. Now it seems I have this pinching type of irritation near the uretha I think, I guess that is whay my OBG means by the aging process because this is not the same type of problem I have when LS flares up. I guess there is no cure for this> I really don't know if I should go to another type of doctor. I read the V book from that famous Boston based OBG Elizabeth Stewart and I am doing what you are doing, and that is pretty much her advise unless I want to go to an antidepressent. I am so confused. Thanks for all your imput. You really help me feel like I am not nuts. What she basically states in her book is that most of these co
CommentTO SUE from CAROL, I really appreciate your posts to me. It is not the best way but without my own computer I have no choice. Now with my husband getting hours cut back..well there goes that hope for now. I am glad you are doing good so far, and yes, I find when I first get up things are pretty good. Now it seems I have this pinching type of irritation near the uretha I think, I guess that is whay my OBG means by the aging process because this is not the same type of problem I have when LS flares up. I guess there is no cure for this> I really don't know if I should go to another type of doctor. I read the V book from that famous Boston based OBG Elizabeth Stewart and I am doing what you are doing, and that is pretty much her advise unless I want to go to an antidepressent. I am so confused. Thanks for all your imput. You really help me feel like I am not nuts. What she basically states in her book is that most of these co
CommentHi Carol: How are you doing today? Do you still have that pinching feeling? I have The V Book too. There's lots of good info in there. So far, I'm doing OK except for the torrential downpours we're having here. I cancelled Acupuncture for today, so I hope I won't get a flare now. Let me know how you're doing. Hugs, Sue
CommentTO SUE from CAROL..Hello, i am so glad you are doing good. There is no pinchy feeling todayI used estrace again last nite and this morning. I am going to try what you are doing but my butt cheeks are irritated after sitting too long. Does that ever happen to you?? I am so lucky to have found someone to talk to about this. THANK YOU
CommentHi Carol: Yes, I get the iritation in my butt crack too. I rarely sit like normal person does. I'm always leaning back to avoid pressure on my vulva. I'm lucky to have you too.
CommentTO SUE from CAROL Good Grief, what is going to become of us. I go to my Derm. next week. If he tells me the LS is under control then I am hoping he can give me something when I have these flare ups. When you get th flare ups to they last for a while or just a day or two. I know, I dont sit like a normal person either. People tell me why dont you sit down when I go somewhere and I have to come up with all kinds of stuff. I am so sick of it. It seems like it travels from one spot to the other and back and forth. I was hoping to hear from Dr.Oz aftermy e mail but I guess that is wishful thinking. Well, I have tongive up the computer for awhile. I will look for your next post to me.
CommentHi Carol: When I flare, it an last for a day or weeks. Some days I can't handle it and others are more bearable. I haven't heard back from Dr. Oz's people either. I hope you have a relatively painful weekend. Sue
CommentCarol, I meant a relatively painless weekend. Sorry. My brain is in hiding. Sue
CommentHi there, i was wondering if anyone from Ontario Canada knows of a good doctor who knows what we are going through? I am ready to go to New York to see Dr. Glazer I have an appointment with my gynecologist in 6 months! Can't wait that long....this is completely depressing! Let me know, thanks Shannon
CommentHi Shannon, sorry to read that you can't find a doctor in Canada that can help you. But before you go to the expense of flying to New York to see Dr. Glazer I would recommend that you read his book first. You should be able to find The Vulvodynia Survival Guide in one of your book stores, or they will be able to order it for you. There is a lot of good information in it. Another source of great info. is this web site. Read as many posts as you can and you will get familiar with what works for some of us and not others. Its a lousy disease. There are things that help some but definitely no cure. We are all hoping for an answer to our suffering in 2010. Its crazy to think you have to wait 6 mo. to see your gyne. You are the proof why a lot of us in the U.S. don't want Pres. Obama health care passed. Good luck to you in whatever decision you make.
CommentTO SUE from CAROL Hi there, I know you meant for me to have a painfree weekend. Actually, I went to my Dermatologist on Friday. He gave me a really good exam and assured me there is no L S at this time. The skin is a healthy pink. I feel so much better after I see him. I showed him the outline of my BUTT and told him I have irritation there. HE said the skin is normal for my age. When I get anxious it makes things worse and I am sure he is right. But it seems that after a few days from each visit I have with him the anxiety returns. He said I can use the low dose of zanax when I get that anxiety feeeling. Tonite I feel a slight irritation in annother spot. So that is where things stand for me at this time. HOW R U
CommentI'm glad your Dermatologist made you feel better. Some days are easier than others. I've had some slight irritation of my vulva. I've been taking Aveeno baths to sooth the area. I wish we would both have more painfree days.
CommentHi Everyone - I can't help but wonder if a lot of you ladies who used to post found a cure for your vulvodynia because it seems like there are only a few of you that post back and forth to each other any more. Is there another web site that I don't know about?
CommentTO SUE from CAROL; Hope your irritation is better today, did you see the post from Carolyn. I have the same question Ihave been wanted to ask you myself. Do people stop posting beause they r cucred. I have reade everywhere there is no real cure.
CommentHi ladies: There are several other Vulvodynia sites; some on Yahoo, one I look at on the IC board, and a couple of others. I'll send the links if you have trouble finding them. A lot of women do well with the anti-depressants, hormone creams and are OK with that. The only "cure" I know about is having a Vestibulectomy or physical therapy. However, I don't think those options are helpful for Lichen Sclerosis. So far today, I'm doing OK. How are you ladies doing?
CommentHi my name is Diane i had been diagnosed with ic and vulvavestubulits last april suffered like hell with it had no idea what was going on i i had gone to multiply urologist cause i thought i was having bladder infection come to find out, i went to see dr.stewart and diagnosed me, never have heard of it in my life so i have gone through every type of med possible creams you name it i have done it, so finally they had put me on neurontin last may and i am currently on 4,000mg it helps i am also going the PT which i have just started. i recently had a flare up this past weekend thinking every thing was back to normal and wam that red rawness right out side the vagina u dont even wanna walk cause it hurts so bad. honestly this is crazy i dont no what else to do, i have tryed the combound medication they irritated me have done valuim vaginally that doesnt seem to work. combo lidocaines. i dont no what else to do it definitly puts a damper on things
CommentI am looking to speak with women who have done the vulvar vestibulitis surgery with Professor Bornstein in Israel. If you can provide information, please contact me. Thanks!
CommentTO SUE from CAROL HI Sue, I just read your post about the other sites. I tried to find them but I am not good at the computer. I found one but it was not as informative as this stite. Do the site you are talking about give different information or better than this one?? I had a pretty good weekend how about You. I get scared now that it will go inside the vagina. Did you ever have that fear? Thanks so much for all your support to us and me
CommentHi Carol: This is my favorite Vulvodynia site, but sometimes it's not as active as the yahoo sites. I worry about everything you do plus more. There were times that I had burning 24/7 and thought I'd go crazy. Thank God I'm doing better now, but I worry that it will all come back. I've been doing pretty well the past few days. Hope we all have a painfree weekend. Sue
CommentTO SUE from CAROL I Am so glad you had a good week. And I pray we all have more and more pain free days. Thanks again sue..Talk soon xxxoo
CommentHi Carolyn - I am starting to think, as you do, that there must be other informative web sites out there. When I first found this site there seemed to be a lot more women posting. I, like a lot of you, have tried so many different antidepressants, physical therapy and creams with no success. Has everybody just given up or have they found something that worked and stopped posting. I have found a tremendous amount of information on this site and would never stop posting. I would love to check out some other sites so if anyone has the links would you please post them. Unfortunately my expertise on the internet leaves much to be desiresd. Thank you & God Bless!
CommentTO SUE from CAROL, Hi Sue hope you are still doing good. I know you said there were Yahoo sites also, and I see Monica and Carolyn are like me when it comes to the computer. You seem to have the most experience of a lot of us. Do the other sites have different information than this one? Do you go days without any type of irritation or dryness or do you at some point during each day get a reminder that you have this crap. I guess what I am hoping for is for it to go away without anymore problems, what do you think the chances of that are. I guess I am a little down tonite sorry for all the questions.
CommentLooking for information pn pre-teens with volvodynia. After seeing 6 different doctors (6 different diagnosis) over a two month period and many missed days from school we finally found dr #7 who diagnosed Meg with vulvodynia. She's been given lidocaine to use to numb the area and it is helping. However she stil has pain and gets very emotional because she feels nobody believes her. I have believed her from the beginning which is why we were at a different doctors office each week, why I took her to the pediatric ER when we couldn't get in to see the pediatric urologist. When the diagnosis/treatments received from thr urologist didn't help I took her to my gynecologist office (they diagnosed it as yeast infections the first time, the second time they referrred us to a dr in Philly but he doesn't see kids. I finally found a doctor who specializes in adolescent medicine. After our first appointment with her she had Megan diagnosed with vulvodynia and had prescribed cream to help. My real question is can you think of any "special" accommodations I should ask for so Megan can be more comfortable in school? Teachers have already given her permission to use the restroom whenever needed without asking, and she's allowed to get up to stretch/walk when needed. Not have had this before myself I feel lost on how to help her the best so any advice anyone has would be appreciated. Also how to deal with the mood swings :-)
CommentTO TRACY, I am so sorry about your young daughter. I feel sick inside to know that young girls have this problem as well as older women. Your daughter is so young it makes me feel greatful that this didnt happen to me at a young age. I am much older but this site has helped me find the correct medications that help keep it under control. I use a steroid creme and there are several that can be used. It has helped me. SHe could also be having a hormone inbalance. Maybe a dermatologist could help also becaus it can be several different skin conditions that other doctors cant see. I will keep your daughter in my prayers. Please let me know in the future.
CommentHi Carol: Sorry it took me so long to get back to you. I've still been doing OK, knock on wood. Hope you are too. Here are the other Vulvodynia sites I look at. http://vulvodynia.hannaoriginal.com http://health.groups.yahoo.com/group/vulvodynia-support/ http://healthgroups.yahoo.com/group/vulvodynia/ http://healthgroups.yahoo.com/group/LichenSclerosis/ Hope this helps. Sue
CommentOf course, I forgot to list another Yahoo site.. http://healthgroups.yahoo.com/group/VulvarDisorders/
CommentTO SUE from CAROL; HI Sue, I tried to get on the sites you mentiond but I was not succesful. I am not really good with the computer.I get the strangest irritations and I cant seem to find anyone else but you I can talk to about it. My husband has been really helpful and been there for me, for sure. But sometimes you need someone to talk to that has had something even the slightest like youself. Thanks for putting up with all my questions.
CommentHi Carol: I was able to click on the first 2 links, but not the others. I'm sorry about that. I'm not so good on the computer either. Maybe someone else can help with the sites. Don't apologize for asking questions. I don't mind. How are you doing today? So far, so good for me.
CommentTO SUE from CAROL Hi, yes I did get on the first two sites but I can't get to talk to people like I can with you. I am glad you don't mind my questions and glad you are good again today. I am not too bad todayeither. I am not sure if I asked you this before but, what The Dr. cant seem to answer is this: I would like to know from you since you are under control, do you still at some point in the day or evening still get irritaation or dryness or any slight burn? I think that is my biggest problem right now. As soon as I feel a little irritation I freak out. I know everybody is different but you seem to be able to make things clear to me. Should I expect to go an entire day without any reminder that I have this or should I expect it to go away completely. THANK YOU for helping me.
CommentHi Carol: How are you doing today? As a matter of fact, I have irritation today. So, yes some days I feel dry,irritated and some slight burning.
CommentTo Tracy, you posted last week about your young daughter. I was wondering how she is doing and if you decided to see a deratologist.
CommentTO SUE from CAROL, Hi Sue, good to hear back from you. I guess that answers my biggest question. It will always at some point let you know IT will never just go away. I refer to it as IT like an ugly animal that keeps taunted you forever. Some degree of burning, irritation or drynes. What a wonderfu thing to look forward to. Please stay in touch with me. CAROL
CommentTO SUE from CAROL, Hi Sue, good to hear back from you. I guess that answers my biggest question. It will always at some point let you know IT will never just go away. I refer to it as IT like an ugly animal that keeps taunted you forever. Some degree of burning, irritation or drynes. What a wonderfu thing to look forward to. Please stay in touch with me. CAROL
CommentHi Carol: I'm sorry I couldn't be more positive about my symptoms. I try to ignore the symptoms and keep myself busy. At least we have each other to talk to. Hope you had a good day. Sue
CommentTO SUE from CAROL: No need to apologize. You are very helpful to me just to talk. I feel a little better that I should not be expecting to be completely free of this animal. You said you still have irritation,slight burning and dryness so that , tome makes me feel not so alone. SO thank YOU. Please lets staay in touch. I dont understand why people stop posting.
CommentHi Carol: How are you doing? I'm OK today. I wish we could figure out a way to not have vulvar pain anymore. Yes, we can vent to each other and not feel so alone. Hope you had a good day. Take care and keep in touch. Sue
Comment
CommentHi everyone my name is sheila. I am 40 years old and was diagnosed with vulvodynia about 1 year ago. I was lucky and was diagnosed quickly..however my gyno doctor was not very compassionate at all so I went on along search for another and half the doctors i see say no you dont have vulvodynia and i dont know whats wrong with you either..see you later..and the other one that does agree that i don doesnt agree that i have nerve pain..hes nuts!!!! I am so discouraged i dont know what to do anymore. My fianances are so tight going from doctor to doctor. I guess I should tell you all about my symptoms..started with what i thought was a uti an dstayed on antibiotics for 20 days then got biopsy and came back chronic inflammation caused by a yeat infection. I have severe burning in my vagina (there is NO visible evidense that there is anything wrong on my vulval area) which is the inflammation and the inflammation has led to pudendal nerve pain (pelvic nerve) and OH GOD does it hurt. I cant sit more than 5 minutes without back butt cheek pain and then if i stand on my feet to long i have severe pressure on my rectum so therefore I lay on my stomache in my living room floor. I feel like im handicapped and in lots of pain with that. I dont know how to explain the pain to my husband and sometimes i feel like the world doesnt know how bad it is. I tell my husband i would give up a billion dollars not to live with this pain or give an darm or a leg..i dont know what else to say. I am currently on the highest dose of nerve pain (lyrica) an d10 mg of nortriptyline. I am scheduled to see a pain specialist in 2 weeks. They say this disease doesnt progress but I feel im getting worse by the day, I have also been to see 2 eurologists and a neurologist and 2 mri's. I wish so bad I had someone to talk to about this pain. I feel so alone. I cant believe that I have such a thing. My family has always been healthy an dso have I. I have to teenage daughters and my heart hurts so bad fo rthem because I cant do things like I used to. They dont really know how bad their mother is hurting. Its like i wake up in the morning an dfor the first second or so i feel fine but then a since of doom comes over me because i know what lies ahead for me during my day. I wish I had someone to cry with sometimes. Thank all of you so much for taking the time to read my sad story. My heart aches everyday because i not only have to suffer but so does everyone around me. God bless you all.. I wish there was a way we could contact each other here.. Love SHeila
CommentOk it sme again and i just realized we can leave our email so mine is Be2she@bellsouth.net if anyone would like to cantact me or im also on facebook sheila sanders kile
CommentSheila, I tried to email you, but the email came back to me. If you want someone to talk to about Vulvodynia, you can email me at: sdsue123@san.rr.com. Sue
CommentTO SUE FROM CAROL, Hi Sue, hope u r still well. I am not doing too bad right now. I was reading Shelia's post. I hope you can get in touch withe her. SHe needs someone with experience like you to talk to. In one of our previous posts we both said sometimes when we message the side the burns it get relief. Does that sound like the prundendal nerve that Shelia is talking about. My Lichens is under control but I do get that same burning like u on the butt cheeks. What do you think?
Commentif you have had a vestibulectomy please email me the name of your doctor and what state you live in. I am in search of a doctor who will perform the surgery and perform it well. email me at cuteangel1029@yahoo.com
CommentHi Carol: How are you today? I'm doing well. I've never really been checked for pudendal nerve damage or anything, so I'm not sure if that's what's going on or not. I haven't heard back from Sheila, so I don't know what's going on with her. Have a great rest of your weekend. Sue
CommentHi Sheila, So sorry to read your post and to learn about another person in so much pain. I have been suffering for 20 yrs. with this horrible disease. For years I thought I was the only person with it. I found Dr. Glazer's vulvodynia book and eventually found this website. I was utterly amazed at how many other women suffered in silence like me. Reading all the posts helped me to have the courage to get out there and see different doctors. My problem is different from yours. My physical therapist ruled out the pudental nerve. Your pain could very well be that. You are on the right track by going to the pain clinic. One person said it was the best thing she ever did. Another lady whom I talk to said it was the worst experience of her life and would never have a nerve block again. Over the lasr couple of years I have seen every specialist and have tried so many different meds and creams. Right now I take 100 mg Elavil at night which helps me sleep. During the day I take 1 mg xanax 3 x daily. The xanax used to help me a lot in the beginning but like all meds the dosage has to be increased and right now it gives me big time constipation. I have two different nerve blocks recently and haven't gotten any relief. My problem is vulvar burning and constant pain in the pubic area. I can't stand or walk and I lose my balance. I am seeing the pain clinic doctor on Monday for an office visit and I don't know where we are going from there. I have done everything but surgery and I am seriously considering that. All I know is that I can't continue with this pain much longer. One person I talk to is having the surgery next Friday. I pray it goes well for her. If it does it's the only option left for me. God Bless !
CommentTO SUE FROM CAROL...Hi Sue, sorry I havent had a chance to e mail you..you know about the computer and my hysband hours getting cut back. I am not doing too bad either but reading some of these other girls make me very afraid. I keep reading back to other posts when I get a minute and now I just started reading about women getting little jabbing pains. Since I feel you and I are similar I hope you dont mind if I ask you:: Do you ever get those little jabbing pains in the labia or vulva? I do once in a while. I am sorry to keep asking you all these questions but since I use the same medications and have the same LS I feel you r the only one that can answer me..THANKS
CommentHI EERYONE, From postings I have done over the past year since I came across this web site and discovered that I was not alone in my misery (as the saying goes misery loves company) I have seen several "so-called experts, been prescribed so many different drugs and creams but sadly to no avail. Even did pelvic floor therapy. Same result. I recently went to a pain clinic and two different nerve blocks. Again they did not help me. The pain clinic doctor showed an interest in my problem and has suggested I try Neurostimulation therapy. They implant a device under your skin and it is programmed to deliver electrical impulses that interrupt the pain signals to the brain. So, instead of feeling pain, you'll feel a tingling sensation. Neurostimulation therapy outsmarts your pain. I am wondering if any one of you have heard of it. Although there is some surgery involved it is nothing like surgery for vulvodynia. Anybody interested I think its worth at least reading about it on line. They can test it for a week before they do the real implant and another advantage is that it can be removed at any time. I have no idea if it works for vulvodynia but I have an appointment with a neurologist on Feb. 23rd and I am going to decide then. Since I have acquired a lot of great info. on this site I am only passing along anything that I think might help somebody. Good Bless!
CommentHi- I have been reading this website for about 2 years now. I was diagnosed with Vestibulitis a little over 2 years ago. I am not sure what caused it, but it started after several rounds of antibiotics and yeast cremes. For all those who are suffering, I know your pain. But don't give up. Mine has gotten better over time. The 1st year was intolerable and i thought the pain would never end. I have been on cymbalta for about 6 months and think it helps. I still have bad days. I cannot wear jeans, pantyhose, or any other constricting items. Sitting for long periods of time is very painful. I also have rectal pain and irritation although the doc says the skin looks normal. I use Unda 270 ointment (buy it online) on that area. I also did PT, which I think helped the muscles relax. I do stretching now at home. I also take Omega fish oil. I find it keeps the V moist... not sure why, but it does seem to help with the dry raw feeling. I pray for a cure everyday and will pray for all of you who are suffering. It is a disturbing condition. I wanted to share what helps me, but everyone's body is different, so it may not be helpful to others. Wishing everyone pain-free days.
Commenthey guys, I've been suffering with vulvodynia and exacerbating sitting, leg and now knee pain gradually over the last 2 years. I was getting a bit better in the vulvar pain some days but then I got a bad yeast infection a couple of weeks ago for which I threw an OTC antifugal cream, coconut oil and pau d'arco at, and now I have been burning and inflammed at a 10+ for the past couple of weeks. I feel like every time I touch my body with something 'down there' it goes insane. I don't really know what else to do at this point. I was wondering if anyone knows of a good allergist around the DC/MD/VA area that might be able to see if I'm allergic to anything food or topically wise that I'm missing. I have no experience in allergy testing and so wasn't sure where to start. Thanks guys.
CommentWould anyone happen to know any any doctors in the DC/MD/VA area that provide interferon shots/blocks for vulvodynia? Thanks.
CommentMel--don't use OTC topical antifungals! They'll do you in! I can tolerate boric acid suppositories much better.
CommentTO MARY, may I ask what type of stretching you do. I also get irritation in the butt area especially if I sit too long. Dr. dont really know a lot about this type of problem and all of us sufferers should try to help each other. I have been trying some squats ..only about 5 or 6 a day to try and strengthen the butt area. I would like to hear back from you...
CommentTo Anne: I do gentle yoga, which helps stretch lots of muscles.I do the sitting squat, butterfly, the happy baby, sleeping swan, and the shoelace. Anything to stretch the hips and groin. Not sure why I have the pain in that area and I know it was not caused by tight muscles, but stretching helps or at least takes my mind off it. I have asked several doctors about it and none can give me an answer. Were you also on antibiotics? The antibiotic I took was flagyl.
CommentTO MARY..Hi..no I dont know what causes mine. I have burning in the Vulva now seems to be under control but I have the pain like u in the Butt area. I cant get an answer from Dr, either. They say nothing is there. I think it is nerve damage of some sort. I use steroid creme and also sometimes in the butt area. I also us babydiager creme. I am trying the squats to toughen up that area.
CommentMonica I am really intersted to know about your appointment with the pain clinic and your decision on getting this device inplanted in you. I am going ot a pelvic pain clnic in april have been going to PT the past 5 month was helping but now all the pain has come back not sure why.
CommentI have to agree with one of the other girls that has posted here. It seems that you find someone who can help you but then th commucation stops. Does anyone have the answer to that????Are all these women that stop posting cured or just get tired of it. It is very disturbing to me..
CommentI have to agree with one of the other girls that has posted here. It seems that you find someone who can help you but then th commucation stops. Does anyone have the answer to that????Are all these women that stop posting cured or just get tired of it. It is very disturbing to me..
CommentCarol- I am one ofthe ones that quit posting have had this for two years have founds things that like PT and lidocaine but then they quit working after time. I guess I have quit posting because everyone is in the same boat in pain and there not too many that get over this disease. For me its too depressing posting and reading everyone stories me. But I still check in once in a while. But if I find something that helps me I will post it. I am now tring accuputure. I hope everyone has a pain free week!
CommentHello. I live across the pond in the UK, can I join you? I have had Vovodinia for 13 years. I first had soreness when I was a child after using a bath product called 'Matey' which I now know was a detergent! Its USP was that you did not have to wash the child! Great USP for a busy mum, but I loved being in the bath and would spend an hour or more playing with the 'bubbles'. Fast forward to year 7 of my marriage following a a couple of very uncomfortable smears and never being able to tolerate tampons. I then had a miscarriage and the stinging came on suddenly after intercorse on day. The pain continued, even getting worse, so I went to my GP who sent me to a dermatologist who prescribed zink and castor oil. Many gynes,VD clinics and dermatologists later and passed the 13 year mark I am once again trying to find a permanent answer, having had a big flair up in the last two years. I tell all my friends ' Never put any bubbles or anything in your baby girls bath, ever'. Amitriptyline did not work for me nor did the other drug usually given for epileptics. Hope to talk to you all soon. Lalique.
CommentHi Carol: Sorry I haven't written lately. Today, I made the mistake of riding the stationary bike and am in pain. I did that b/c the arthritis in my knees has been bad and it hurts to walk on the treadmill. I can't win. Do I walk and have pain in my knees, or sit and have vulvar pain? How was your day? Speaking of sharp pains in there, yes I get them and had some today.
CommentTO SUE FROM CAROL: I am so sorry you are having a bad time of it. I have to give your credit for trying the stationary bike. I could't do that. I was wondering why I hadn't heard from you. I am ok I guess...better than last year at this time. Do you know what those jabbing pains are because no doctor seems to be able to tell me. I just freak out when I get them. THANKS I PRAY YOU FEEL better the next time you write to me.
CommentTO SUE FROM CAROL: I am so sorry you are having a bad time of it. I have to give your credit for trying the stationary bike. I could't do that. I was wondering why I hadn't heard from you. I am ok I guess...better than last year at this time. Do you know what those jabbing pains are because no doctor seems to be able to tell me. I just freak out when I get them. THANKS I PRAY YOU FEEL better the next time you write to me.
CommentHi Carol: How are you? I had some irritation today after wearing slacks for awhile and sitting. I didn't even exercise b/c my knees are still feeling sore and stiff. What a mess I am with all these problems. The stabbing pains might be muscle spasms. I'm not really sure. Have you ever tried muscle relaxers? I take them for TMJ, but I'm not sure if they help my vulva. I hope you had a good day. Hope to hear from you soon. Sue
CommentHi Laura - the doctor at the pain clinic that suggested the neurostimulation implant wanted me to see a neurologist in the hospital where the pain clinic is a part of. I did and after two neurologists checked me out I got the distinct impression that they wondered why I was seeing them. They looked at MRIs I had recently done at a diffferent hospital and told me the same thing the drs. there did. They did not give me any info. about the implant. I told them that comedian Jerry Lewis suffered from chronic pain for 37 years after a stunt he did on stage went wrong. For years he suffered suffered excruiating chronic pain and was taking really strong pain meds. He travelled all over the world for something that might help. In 2002 somebody recommended the neurostimulation implant. He had nothing to lose. It worked for him and since then he can control the pain and is off all his pain meds. He does have a lung problem but that is a different issue. The dr. just laughed and said "don't believe everything you read on the internet."He has recommended thaat I see a female doctor at the hospital and is supposed to have lots of experience in women's health. I have an appointment on Wed. I want to check out everything before I make the final decision. I will see what she has to say. I am still very interested in the implant. Am not even sure if it would work for vulvodynia and if my insurance would pay for it. I have read several articles on Jerry Lewis and they all talk about it. It has changed his life completely. I find that no dr. wants to commit to anything. The thing I like about it is that they can set it up for a week to make sure it works before they do the implant. You can also have it removed if you change your mind about it. I know I would love to get off my meds. It amazes me the run around people get from drs. and I am talking about top hospitals in Chicago. I will keep you updated on my progress. I must say though I am disappointed that more women did not respond to my post. I try to pass along any info. I get. Good night and God Bless!
CommentTO SUE FROM CAROL hi, It sounds like you r back on track. That is good news...for me not too bad again today. No, I havent tried muscle relaxers for the jabbing pain. I just get so frightened whene I read some of the other girls that have stabbing, throbbing pain and I get scared that is what is coming next. I dont and hoping if that is what I or you would have already happened. There are so many other things I have read about Planus etc. I am getting confused. Also, In the V book she mentioned the girls with throbbing and stabbing pain. I am really scared. Thanks
CommentHi Carol: I hope you don't get the jabbing pains. Try to worry about one day at a time, which I'm trying to do. It's not easy, but it makes life more bearable. I'm doing OK today and hope you are too. Keep the faith. Sue
CommentTO SUE FROM CAROL: Thanks for staying in touch with me. I dont feel so alone knowing I have someone to touch base with. I am doing OK also, Do you still use estrace and clobetasol cremes each week??
CommentI have been diagnosed with VV for at least 8 years and have tried everything except surgery (which my doctor refused to do). I am now at a point where I am wondering if the pain has any emotional connection. My horrible marriage is ending and cooincidentally I am beginning to have strong feelings for someone else. It seems to me that the VV is getting better now that I am leaving a bad marriage and entering a supportive one. I don't mean to suggest that everyone who suffers from this has a bad husband to blame, I just wonder if there are others out there who saw improvement when they became involved in a better relationship.
CommentHi Jody, I think you are right. I have a great husband but since high school I have suffered panic attacts. I have always been my own worst enemy. I have a type A personality. In college anything less than an "A" was failing to me. I went on to have a high stressed job as a CPA which I loved but again everything had to be perfect. In the midst of all that I married a wonderful man and had four kids and had to be the perfect mother. Everyone I meet thinks I am so laid back and easy going. Little do they know that I just cover things up pretty good. I worry about everything and everyone. There is not a thing to worry about but that is my makeup. Unfortunately, one of my kids is just like me. Maybe why the doctors can't find anything wrong with me is because my problem might be stress induced. The only thing that helps me is xanax. It's great that you are getting out of a bad marriage and you are starting a new relationship. I am sure that will reduce your stress and I wish you a wonderful pain free life in the years to come. I am retired now and trying to change my way of thinking. Who cares if the beds are not made everyday. There is always tomorrow. God Bless you. You are doing the right thing. Life is too short.
CommentTO MONICA AND JODY, Hello and I find your points of view very interesting. I too am a ver anxious person all my life. Worried and still worry about everything and anything. If I find that there isnt anything to worry about I make mountains out of mole hills. I do find that my pain/irritation does get worse with stress. I too am trying to rethink things, if I dont mop the floor today do it tomorrow. I am also retired. Can either of you share what type of pain you have. Like burning, or pinching or stabbing pains. I would really be interested in this and also what you girls use for medication beside xanax--I also use it at nite time. PAIN FREE Is what I PRAY for all of us. I hope to hear back from you girls. Anna
CommentHi Anna, Gosh there is another me out there. Its not easy to be perfect and it sure piles on the stress. When my kids were going through school I would always have a party for them for all the different occasions that had to be celebrated. I would always have to wash the kitchen floor and bathrooms the morning of the party because they would not be clean enough otherwise. All this on top of cooking everything from scratch. These were not small parties either. My husband would get mad at me and say "why are you inviting people over if you are driving yourself crazy". I have a lovely next door neighbor who told me that she hated when I threw a party because they had to cut their grass and have their yard looking nice so my guests didn't think we lived next to slobs. We laugh about it now. I bet that beats your worrying ha! ha!. Xanax has helped me a lot for a long time but it is addictive. I started years ago with a very low dose but over the years my system called for more. I have also had malignant melanoma six years ago. I was on Interferon and Paxil for nine months. Interferon is not a very nice drug and to be honest I don't remember a lot about that year. But thank God I am cancer free now. I see my oncologist and dermatologist every six months. The vulvodynia has gotten worse over the past few years. The xanax takes the edge off the pain. I take Elavil at night to help me sleep. For the last year or more I notice I lose my balance and from researching xanax I have come to the conclusion that my long term use could be what is causing it. Its not an easy drug to get off of. Losing my balance has caused me to fall a few times recently. Lucky I did not break anything but I am afraid to drive anymore or go out without my husband. Another problem is that my husband is the only one who knows about my vulvodynia. How do you tell your friends or relatives that you have this chronic pain and burning in your vulva. So I smile and say my back or knee is killing me. I have seen so many different doctors and have been put on so many different meds but to no avail. I always go back on the Elavil. I take 100 mg going to bed and it helps me sleep. I did see a great doctor today who is going to help me get off the xanax. I still try to be optimistic. I feel so sorry for so many young women who are suffering with this. I pray for all our sakes that someone soon will find an answer soon.
CommentTO MONICA, Hi again...you sound like a carbon copy of me but I think i am older than you. I am 61 yers old and I think that the hormone's are what gave me my burning. I have a girlfriend who has a horrible marriage and used zanax 1mg. at least once a day. I use .50 at nite. She falls a lot also. How strong is your zanax. I am so GLAD to hear of CANCER FREE from anyone. Thanks hope u can get back to me ANNA
CommentTO SUE FROM CAROL: Hi Sue, I hope u r doing ok. I havent heard badd from u on my post to u on 3/1. Hope everything is still Good. CAROL
CommentTO SUE FROM CAROL: Hi Sue, I hope u r doing ok. I havent heard badd from u on my post to u on 3/1. Hope everything is still Good. CAROL
CommentAnna and Monica, Thanks for your input ladies! The party story made me laugh - I too have to put on the end-all-to-be-all parties for my 6yr. old! I don't think I am a worrier BUT I am a perfectionist. I pray that when/if i find myself in a good realtionship this horrible disease is gone!! I have had the best relief with 5% lidocaine 1 hour before sex as my problem has always been pain with penetration. Although it stings at first it does numb the area somewhat - not perfect though. After all this time I am so anxiuos even to try sex I think it's all got to be a mix of physical and emotional causes. Good luck to you!
CommentHi Anna, Delighted to hear back from you. You are wrong about my age. I am older than you. I am 64. You asked how much xanax I take. I take 1 mg 3 x daily. When I first got this vulva burning and after being tested for every STD out there they all came back negative. My gyne at the time put me on very strong antibiotics and creams. This went on for months and on retrospect I think that they only made the problem worse. I was about 48 when all this started. It could very well have been hormonal. I changed doctors and I wanted to be tested again even for diseases that don't even exist in this country anymore. I think he thought I was nuts and asked me how my sleeping was. Of course since I always had something to worry about I didn't sleep very well. He started me on a .025 mg of xanax to be taken 3 x daily. I didn't want to get hooked on it so for a while I would only take it once a day. It took the burning away. Over time I had to increase it to 2 x daily and then 3 x daily. But honestly it took the chronic pain and burning away. At work I had to attend a lot of meetings and give presentations to the Directors. Public speaking is not one of my better qualities. Would get so nervous so I would pop a pill and I did great. Over the years I was taking .50 mg 3 x daily and now I am up to 1 mg 3 x daily. I refuse to increase it any more. I saw a great doctor who has made an appointment with a phychrist to help me wean off of it. My GP never questioned the amount I was taking. Just renewed my prescription, no questions asked. Its a great drug but should only be taken over a short period. I don't even know if I will be able to after so many years. I am staying optimistic and even joked with my doctor saying if someone kidingly tells me I am crazy I will say "I know" and I am seeing a psychrist. Tell your friend to be cautious. You can't just decide to stop taking them one day. One think I have noticed though that the more I upped the dosage my pain and burning also increased. I guess I am just a mess but I am determined to get off xanax. Would love to hear from you again. God Bless!
CommentHELLO EVERYONE!!! I WAS WONDERING IF ANYONE KNEW OF ANY FAMOUS PEOPLE WITH VULVODYNIA/VESTIBULTIS OR VULVAR PAIN ISSUES? IF SO YOU CAN EMAIL ME (MY EMAIL IS ABOVE) I WAS JUST WONDERING BECAUSE THEY COULD REALLY HELP THE VULVODYNIA/VESTIBULTIS COMMUNITY! ALSO YOU CAN CHECK OUT MY WEBSITE: http://rememberoursoldiers.weebly.com/ BY THE WAY I HAVE VULVODYNIA & I'M 16 YEARS OLD! THANKS!!!
CommentHELLO EVERYONE!!! I WAS WONDERING IF ANYONE KNEW OF ANY FAMOUS PEOPLE WITH VULVODYNIA/VESTIBULTIS OR VULVAR PAIN ISSUES? IF SO YOU CAN EMAIL ME (MY EMAIL IS ABOVE) I WAS JUST WONDERING BECAUSE THEY COULD REALLY HELP THE VULVODYNIA/VESTIBULTIS COMMUNITY! ALSO YOU CAN CHECK OUT MY WEBSITE: http://rememberoursoldiers.weebly.com/ BY THE WAY I HAVE VULVODYNIA & I'M 16 YEARS OLD! THANKS!!!
CommentTO Monica; Hello again, it is good to hear from you since you are close to my age, If you would like to talk with me personally I would ask you to post your e mail to me. There are several reasons why I cant post mine at this time. If you prefer not to that is ok too. We can still post to each other on this site. Anna
CommentHi Anna, I don't mind you having my Email and feel free to contact me anytime you wish. Its mffaley@sbcglobal.net. I used it on my posts all the time when I first discovered this website. I keep in touch with a few women from time to time. My heart goes out to them. They are so young and I can't imagine what it must be like to have a relationship, or have kids while dealing with this lousy problem. Its not like women don't have enough problems down there as we get older with menopause, hot flashes, dryness and all that good stuff. I stopped using my Email address when posting because I think others do the same thing and consequently there is not a lot of activity on this site at times. Either that or there is another site I don't know about. Anyway if I find something that I think might help others I post it without my Email. Must take my meds so Good Night and God Bless!
CommentHas anyone heard or used valium suppostiorys? I have heard they are suppose to relax the pelvic floor musucles. I have had vulvodynia for 2 years have 2 kids under 3 and needs some sort of relief. I have been in PT for 6 months had good results till it all came back worse tried most drugs and creams. I have found the Earth mamma bottom balm helps with the burning and soreness. Its sort of like a cooling sensatation similar to ice and its all natural.
CommentTO SUE FROM CAROL: Hi Sue, I hope u r ok. I havent heard back from you in a while. Please let me know how u r doing. I sent a post to you last week. CAROL
CommentHi ladies and Frank. I used to post hear years ago. The only farmiliar name here to me is Franks. I have suffered from Vulvodynia for going on 9 years now. Thats a long time. I have tried everything under the sun. This past year has been the best for me over those long miserable years. I came across a woman named Laura who cured herself and I also have kept in touch with a woman named Wendy who got alot of crap on this site, but who also cured herself. Between the 2 of them I stay pretty much pain free with a flare every now and then. Very rarely though. I have noticed alot of you are talking about stress. Well I have a very high stress level for sure. Stress damages us so much. Men and women. Even children. I stumbled upon Laura by accident online and have learned that an unbalanced pH can cause vulvodynia. Some woomen like Laura also suffer from yeast. If your bodys pH is unbalanced then it is hard to treat the yeast. Stress makes our bodies very acidic. Do some research on an alkaline diet and there is a great book out there by Christopher Vasey. He even mentions on a page in the book vulva pain, redness swelling and a different discharge. I also went through some testing last year and had my doctor have my urine tested. I was tested for oxalates, phosphates and alot of things I dont know about. the only thing that came back positive was high uric acid. My gyn said that uric acid can burn the vulva skin. It also causes kidney stones. I have to drink 2.5 liters of water every day. I had the priviledge of finally meeting Wendy this past September as well, she was in Florida for h er daughters wedding and I drove the 8 hours to spend some time with her. She made herself well by using muscle testing. Chiropractors use this technique. Mine does. Wendy got some flack here because she took it all to the next level and does something called energy testing. It is the same as muscle testing, but she uses a crystal. To do muscle testing you must have a partner all the time, that is not convenient. Last month I was having a painful week, n ot TOO bad but who wants any pain at all? I first tested my urine and I was very acidic. As soon as I got myself back in check I was pain free. Until 5 days ago. I was 100% free of pain and hubby and I had sex, unprotected and now the pain wont seem to go. My pH is fine, but I feel that the pain was brought on by having sex without a condom which his semen irritated me, then since I was irritated I decided to use lidocaine ointment and I think it may be keeping me irritated as I am swollen today. I have been bad about doing the muscle or energy testing so it also could be from my eating something bad for me. There was a woman who asked the Doctor who writes in the magazine Womans World if it is true that gluten can cause vulvodynia. She said yes, any food allergy can cause vulvodynia. So it is great to be able to ask your body what is ok to put into and onto it by using muscle testing with a partner or energy testing with a crystal. If you do not believe in using crystals, so be it. Ask a chiropractor to teach you how to do muscle testing. It works. Today my body only wants fruits and veggies. I am perfect on my pH today, probably because fruits and veggies are alkaline, but once I have pain it takes days for me to get it under control. So I recommend looking into a more alkaline lifestyle, try some muscle testing, it will let you know what foods your body cant handle and have your urine tested for things like oxalated, phosphates and most importantly uric acid. Drink 2 to 2.5 liters of water each and every day and if you have pain after unprotected sex, dont forget the lamb skin condoms. Once in pain, try not to use that lidocaine. Yes it causes some relief but at the cost of eventually making you feel worse, I know, I am dealing with it right now. It tends to dry out our vulva skin after a few days. Do I want to go in and put some on? Hell yeah. I am dealing with having to go to a funeral and would like the relief, but I wont because I want to feel better really really soon and I think it made me worse. Usually just realkalizing my body works for the pain so it h as to be something else. I have been bad with my muscle testing because I was feeling no pain. It eventually takes a toll on your body when you are putting bad junk into it. So stay stress free, it acidifies you.
CommentCandi, I have read several of your previous posts and was curious how you were doing. I had assumed that most stopped posting because they are cured. Then again, I can see on previous guestbooks that some stopped posting because of the bickering back and forth. Sorry to hear about your latest setback. However, you know what you need to do to feel better and that the pain is only temporary. I, too, believe there is a connection between sex and vulvodynia in my case. Perhaps some lingering bacteria/yeast on my partner that doesn't affect him but throws my whole vaginal flora out of whack, so for now, we've been abstaining until I get completely healed. I am seeing a naturopathic doctor who does muscle testing, and she strongly believes in the whole pH thing. I put pH drops in the water that I drink and have increased my consumption of raw vegetables. No more coffee for me, but to tell you the truth, I don't even miss it now. Wish I could say I was totally cured, but I have only been doing the natural route for a few months, and considering that I have had vulvodynia for almost 4 years, I know it is going to take a while as the body heals in layers. Thanks for "stopping in" and for giving me renewed hope that better days are possible and within one's reach. Hugs, just me
CommentHi, At last I have found other sufferers of this horrendous illness. I have a lovely gyn who is very sympathetic to my plight. At present i am on pregabalin and amitriptylin which help. I am losing my nursing job as i have been off work a year and would just love to hear from others to give me some hope! Love 2 all Helenx
CommentHi Helen, please let me know what your symptoms are. Do you have pain, burning when sitting, itching or all of them. I am sorry t hear you have lost your job because of this. Cant you go on disability ???
CommentLOOK AT MY COW, MY COW IS AMAZING GIVE IT A LICK, IT TASTES JUST LOOK DOG SHIT
CommentTO MILK MY COW;;;YOU ARE A DISGUSTING PERSON LOOK AT MY ASS AND U WILL SEE YOUR FACE. THIS IS A SERIOUS CONDTION DO U HAVE A MOM OR DAUGHTER OR SISTER OR MAYBE YOURSELF?????
CommentTO MILK MY COW - YOU ARE THE MOST DISPICABLE, DISGUSTING EXCUSE OF A HUMAN BEING THAT I HAVE EVER ENCOUNTERED. THIS IS A REAL DISEASE AND I WOULD NOT WISH IT ON MY WORST ENEMY BUT WHEN YOU STOP DRINKING THE COOL AID TONIGHT I HOPE YOU WAKE UP TOMORROW WITH VULVODYNIA SO BAD THAT IT WILL WANT YOU TO LICK YOUR COW.
CommentHey ladies! I am going to be on MTV! i will be talking about my life with vuvlodynia/vestibultis. I was wondering if anyone had anything they think i should say, or have something about the conidtion you would like to make known, I am 16 years old and of both vestibultis & vulvodynia, i want to make these condition known. Please email me at cuteangel1029@yahoo.com if you would like to give me ideas on what to say, i already know alot about this condition but someone on here might have something to say about it, i would have never thought of! So please email me your thoughts. God bless (you have until friday the 19th to email me with info)
CommentHi Desiree - Please let us know what show you will be interviewed on and what time the show airs. I am sure a lot of us would like to see it. Vulvodynia needs all the publicity we can give it. You are a very brave young lady.
CommentHi again, yes i will let everyone know when it airs. It will be on MTV but i'm not sure when. Will keep you updated!
CommentTo DESIRE: you are so young to be dealing with this, so are all the rest of us. We have been pushed aside for finding better sexual functions, larger breast, face lifts. This is a complex painful skin disease that even men can have. The many diagnosis that fall under vulvodynia are numerous. But I think after 2 years of suffering and research myself , the medical field should be able to help us. BUT IT ISNT ABOUT HAVING BETTER SEX so it gets pushed aside. Even Opray thought it kinda funny. With her power and money instead of politic she could have spent some of that money on women white or black.
CommentFrank--I came across this article citation from the latest NVA e-maill and it made me think of you: Chronic vulvar fissure--a rare manifestation of mycosis fungoides. Reichman O, Sobel JD, Bentley G. J Low Genit Tract Dis. 2010 Jan;14(1):65-7. BACKGROUND: Vulvar fissures are a common cause of vulvar pain and discomfort. The differential diagnosis of the underlying process is broad, and some cases remain undiagnosed. Mycosis fungoides, the dominant component of cutaneous T-cell lymphoma, rarely present as fissures. We report a case of a chronic vulvar fissure due to mycosis fungoides. CASE: A 55-year-old woman was referred to the vaginitis clinic for evaluation of a chronic vulvar fissure, 6 cm in length, located at the left interlabial sulcus. A detailed history and examination for other skin lesions revealed an erythematous pruritic patch on left breast that had been present for years. Repeat biopsies from both sites showed a dense dermal lymphocytic infiltrate composed predominantly of CD3- and CD4-positive T cell with minimal epidermotropism. A T-gamma polymerase chain reaction analysis demonstrated a clonal T-cell rearrangement. Based on a diagnostic algorithm that combines clinical features, histopathology, and molecular biology, a diagnosis of mycosis fungoides was confirmed. CONCLUSIONS: Patients presenting with vulvar lesions should always be suspected of having an underlying dermatosis, and a detailed examination for other skin lesions should be performed. In the presented case, once both skin lesions were linked clinically, repeat biopsies of both sites led to a confirmed diagnosis of mycosis fungoides
CommentHigh everyone, just wanted to let you know i had an interview with MTV they are doing a new series on teenagers who are differnt than most. They picked me to talk about my Vulvodynia/vestibutlis. The executive producers of MTV are still making chioces about whether to make this a series or not (it's still being planned) but IF the executives OK everything i will let everyone know when & what time i will be on the tv. Just wanted to tell everyone that. Many teenagers wrote them about what makes them differnt and out of thousands of teens i was 1 picked, so it's pretty special. I REALLY TALKED ABOUT HOW VULVODYNIA EFFECTS ALL OF US IN SO MANY DIFFERNT WAYS! I'M SO EXCITED TO GET THE WORD OUT!!!!!!!!!! THANKS EVERYONE
CommentTO KEP - I know your post was to Frank. FYI I have not seen a post from him for months. I don't know why he stopped, maybe he just found another web site. I hope he and his wife are doing good. I have not posted for a long time myself but I couldn't pass up your post. I assume Frank has a medical degree and most of us who suffer from vulvar pain and burning are not doctors. They give most of us the run around. Again I must repeat your post was only addressed to Frank but we are all desperate for any help we get from other sufferers on this site. I have aquired a wealth of information from the many women who post. I must honestly say your post reminds me of the Obama Health Care bill. Over two thousand pages and the many educated people who have read it don't have a clue what it says. That is how I felt when I read your post. Again I apologize for ranting about it as it was not meant for me.
CommentDawn, Frank doesn't post on this site anymore b/c a few of the women here didn't feel comfortable with a man posting here. I wish he'd come back and post so we can get a man's prospective.
CommentPlease, enough about Frank (who ever HE is) this is for women who need to feel comfortable...not a man who has no idea because he doesnt feel it. He may have a family member with it BUT HE cant' FEEL it. We will loose the women if a man posts here
CommentSORRY you two girls...I agree with NONE...men's perspectives really have no place on this womens site. If he has a female member of his family with this then she should be posting. THANKS
CommentHi Desiree - How exciting that you were interviewed on MTV about vulvodynia. I hope they will air it soon. I get the impression that you think of yourself as different from other teenagers. I hope you are perceiving yourself in a positive way. It has taken a lot of courage to come out and be on TV like you did. My husband is the only one that knows about my volvodynia. For most of us on this web site it is an ugly secret. I hope for your sake that is just a hormonal change and by the time you are 17 it will only be a memory from the past. Keep us informed and may God Bless you.
CommentYes everything that was said about me was positive. Most teens today are not very good kids. I have vulvodynia & vestibultis....really you shouldn't be ashamed of having this condition........ VULVODYNIA/VESTIBUTLIS is NOT something to be ashamed of.....it's not an std or something we did....it can happen to ANYONE AT ANYTIME. thats why i wanted to be on MTV i want america to know it's not our fault we have this. God bless i'll post on here if the executives say YES to the show. thanks
CommentTO DESIREE, I think this is wonderful but dont forget it isnt just something teens get. Older women and men can get it and there are other names that fall under it. Lichen Planus Lichen Scelrosus, Vulvalodynia,(spelling VIN so manyother painful vulva conditions. Good Luck and let us know when it will be on and the stations for the East, West Coast GOD BLESS YOU AND ALL OF US
CommentHi Desiree - I hope you did not get the wrong idea from my post. I think what you did was awesome. I happen to be from the older generation when kids were to be seen and not heard. I tried to be very open with my kids and now I can see that they are the same with my grandkids. My mother never talked to me about getting my period and forget sex. Are you ready for a laugh? When I first got my period I thought I had high blood pressure. I attended a Catholic high school and in my sophmore year the nun passed this little book around telling us about the birds and the bees. I can't imagine you ever even heard that phrase. We were all embarrased that another student would know we were reading it. I am giving away my age here. There has been a lot of changes over the years - some good and some not so good. Somethings that were instilled in many of us in our youth tends to remain with us all our lives. I can see you are one of those great young ladies. It's unfortunate that we have this lousy disease in common. You are much too young and I applaud you for having the courage to get out there and be vocal about vulvodynia. It certainly nothing we did wrong and with enough people like you I feel positive a cure is on the horizon. God Bless you Desiree!
CommentTO ANN: yes i know this is something that any can get...but it is REALLY strange for a teenager to have this. To MONICA: yes i understnad, trust me before this condition i was very embarrased to talk about "down there"......but this condition is such a HUGE part of my life...i can't hide it....i told mtv it's like hiding a baby that your ashamed of......i'm not ashamed i have this condition and i have to take care of it everyday....good or bad......i really hope they air it.....i will be sure to post on here when they do
CommentTO DESIREE;; I certainly agree with you. It is not as common among teens but I have done years of research and was astounded by how many of you young girls are suffering. It is horrible for young and old. I have found in my research that a lot of this for older and younger is hormonal. Since you are younger your chances of overcoming this is greater than those of us who are older. I pray you get on the show and speak OUT for all of us. Who know, maybe the great Oprah may take it more seriously and use some of her finances to help us. It doesnt matter what color you are or race or gender. YOU GO !!! FOR ALL please let us know when and what time and channel
CommentTO ANN: yes i've heard that Sometimes hormones can have something to do with the condition but...my hormones are fine, i've already been tested. So idk what it is...anyways God bless you! By the way my friend laura recommended this AWESOME herbal stuff called "earth mama baby bottom balm" and it helps a little with pain.
CommentThanks for your response Dawn. I used to frequent this site years ago when I was first diagnosed, and so very desperate for answers and relief. I now have not browsed these pages for the past few years. I have since not become "cured," but learned about this disease and my body and gained much perspective on how to live with my condition so that I am in less (not no) pain. I plan on typing up my "tips" soon and posting for all, as I have been helped very much by others' support and suggestions as well. I only posted the clip of that particular article because it reminded me of a rather uncommon problem that Frank's wife had--she kept having these recurrent vaginal tears, which no doctor could figure out the cause of. The article was an interesting case report (albeit not generally helpful for the typical vulvodynia patient). Not meant to be anything more than that. Actually, Frank does not have a medical degree, but I do. As for the ladies who are so opposed to a man's presence on this site...you are all entitled to your opinions. I however would like to state that I have no issues: I am very happy to meet genuinely concerned men who actively demonstrate interest in this disease, and who are willing to advocate for the affected women in their lives. Enough said on that subject.
CommentTO KEP; May I first say, I will be looking forward to your tips for all of us hopefully to gain some relief. But in the matter of a male on this site: I must agree with the other women and maybe the reason you have no problem with a male listening to women talk about there V area, is because you are in the medical field. Most of us are not and feel very uncomfortable about a male reading about our labia, vaginas etc. I am very happy that you have been able to come to terms with this terrible problem and I am sure all the members will be waiting for your tips and we will all be greatful. Thank You
CommentTO KEP - Thank you for not coming down hard on me for your post to Frank. From some of his posts I assumed he was in the medical field. I have been to a lot of male specialists who seemed uneasy talking about vulvodynia. As a matter of fact they all referred me to female health care specialists. Your terminolgy was away over my head but I again apologize to you because it was only meant for Frank. I wish some of the male doctors were as comfortable talking to me about my problem as Frank seemed to be in his posts to the ladies on this site. I feel like what I have is a tear in the vulva but nothing showed up on two ultrasounds. I will be watching for your tips when you post them. Most of us need all the help we can get. Thank you.
CommentTO KEP -- I am one of the ladies who was uncomfortable about a man posting on this site. A feel a person has to actually suffer from vulvodynia to know what it really feels like. Since that man's wife is suffering shouldn't she be the one posting. I can't imagine me knowing that my husband was sitting at the computer every day always ready to answer some other woman's most intimate problem in very explicit language. I know I would have a real problem with that. You are right about getting a man's perspective but he carried it a step further. I really thought he might be in the medical field but since you seem to know that he is not I would rather get my information a M.D. Nowdays there are so many perverts on the internet we also must be careful. I couldn't help but feel that since his wife couldn't sexually satisfy him that he got gratification from posting about it on this site. I hope I am completely wrong but I for one is glad that he no longer posts.
CommentTO CAROLYN, I agree also with you and the other girls. I can't imagine a man posting about women problems. I think I read another lady state the same thing: WHY didn't his wife post. I also agree with the latter part of your comments. Ihave also thought about those types of things and i really stopped posting. I dont know why this man's name keeps coming up but I along with many other's is glad he doesnt post here. THANKS no offense to anyone. And yes, he did give the illusion he was in the medical field.
CommentTO CAROLYN, I agree also with you and the other girls. I can't imagine a man posting about women problems. I think I read another lady state the same thing: WHY didn't his wife post. I also agree with the latter part of your comments. Ihave also thought about those types of things and i really stopped posting. I dont know why this man's name keeps coming up but I along with many other's is glad he doesnt post here. THANKS no offense to anyone. And yes, he did give the illusion he was in the medical field.
CommentHello everyone--thanks for all of your responses. I guess I really haven't been on this site recently enough to know what has or has not been been going on, so I can't really can't, nor should I, make any further judgements. Anyhow, when I get a chance, I will make a list of what has worked for me. Believe me--I got hit with a nasty, nasty case. So if I can manage, ANYONE can manage. And I really do mean that. There are good days and bad days, but I have managed to wear jeans again, to sit, to pee and poop like a normal person, and even have enjoyable sex. Yes, I am still in pain, but I have learned how to somewhat decrease the intensity and adapt my lifestyle so that I can manage it.
CommentTO KEP'' THAT IS GREAT, I am one who is waiting for your list of tips and some imput on how to deal with the bad days I know that everyone has different symptoms and different reasons they suffer but I am sure if you have found some ways to help us we could all use the help and suggestions. PLEASE HURRY WITH YOUR HELP!!!!
CommentHello Ladies! I just wanted to ask if anyone is taking Cymbalta? I went to see my PCP the other day for something other than my Vulvadynia, but when he asked me what meds I was taking I told him Elavil. He of course asked what I was taking it for and I told him, it surprised me that he heard of it and knew alot about it. He mentioned that I shouId ask my Specialist about Cymbalta. He said it doesn't have most of the bad side effects like Elavil does. Like the dry mouth, weight gain and sleepiness. I know that everyone responds differently to meds, but I am just curious if anyone has tried it or even if they tried both Elavil and Cymbalta. Thanks for all of your help. Good night and God Bless you all!
CommentHi - I am new to this site.
CommentHi - my name is Sue and I am new to this site. I have not been officially diagnosed with vulvodynia but all signs point in that direction. 2 months ago I woke up with the feeling of a yeast infection - which turned out was bv. treated for this with 3 rounds of antibiotics. Initially, my ph was way off and I had many 'clue cells' present on the wet mount slide - was retested several times with the same results. At first I thought the burning feeling was a result of this but i have been cleared of clue cells and my ph is back to normal but the burning remains the same. it is constant. there is no relief - sometimes vitamin e oil helps a bit but nothing really helps. I am able to sleep but it often wakes me up and I can't get back to sleep. I sit all day for work and it is really bothersome. I am seeing a homeopathic dr. who is having me make some dietary changes and has given me some immune boosting supplements as well as some antimicrobial inserts. I am doing this with her while I wait for an appt. with a specialist. Does anyone have any recommendations for me for things to try while I wait for the specialist? I'm so frustrated and sad that this is happening to me - i have 2 kids and i'm just struggling with eacnh day. even my friends have noticed a difference in my behavior and are constantly asking if I am alright - NO I AM NOT!! any advice out there? thank you for listening.
Commentfor Susan, Note that many soaps have a pH value of 9-10 so that too thorough washing will upset the healthy acidic environment of the vagina. Many experts advise not using soap on this area, and certainly try not to get soap inside the vagina which will alter the vaginal pH. The vagina is a self-cleansing organ and all you need to do is wash away secretions trapped around the external folds. The average pH of semen ranges from 7.2 to 7.8 which explains why sex sometimes makes a woman more prone to infections such as BV. Blood has a pH range of from 7.34 to 7.45 which explains why menstruation can cause an attack of BV. pH values will change as you progress through life. Pre-puberty the reading will be around pH7; during our reproductive years when the vagina is more vulnerable to infection an acidic pH of around 3.8 to 4.5 guards our health; and after menopause we return to a pH of 6-7. Your skin may be inflammed from the b.v., give it time.
CommentThanks Carol - so it's possible that this will eventually clear up? I'm so confused by vulvodynia and what causes it and what determines whether you have it or not. My dr. did do a biopsy which showed inflamed skin on the inside of the vaginal wall but not lichen planus or lichen sclerosis - she wanted me to try a steroid but it just burned more so I have stopped that for now and am trying this homeopathic route. it just seems strange that the vagina would take so long to heal when inflammation anywhere else clears up so quickly. anyway, thank you for your insight. I have not been washing the area with soap - just a mild non scented cleanser like once a week....
CommentTO KEP"" I was hoping to see your list that may help some of us with this THING we have PLEASE POST SOON
CommentThere seems to be one woman on this site with several aliases who is objecting to Frank posting. Where is the freedom of speech? I think I'll be posting on another site from now on where everyone is allowed to post their thoughts and not get criticized for them.
CommentTO KEP' I hope this back and forth about this Frank will not stop you from posting your list of things that can give us some help. That is my concern and I am sure most of the other's here feel the same. Please Let Us know some of your tips. My name is Anne
CommentTO xxxxxx - I am one of the women who felt uncomfortable about Frank's postings. I don't need to use an alias. I always post under my name. I couldn't help but wonder why you didn't give your name but make the statement that someone is posting under an alias. I still stand by what I said. A few others posted indicating that they also had the same feeling. NOBODY asked Frank to stop posting. I would also like to point out to you that freedom of speach works both ways. He has the freedom to post and we have the freedom to disagree. Please next time you post have the courage to use your name before you critize others on the web site.
CommentTo All: Please do not waste your time and energy discussing my not posting. I am only writing now to say I stopped posting because I did not think I could change the minds of those ladies who were uncomfortable with a man posting here. I still think it is unfortunate for those women to think a man who is not in the medical profession cannot separate the sexual aspects of a woman with this illness from the clinical. I never have found anything in these personal accounts in the least bit sexually stimulating. I had hoped without my being here and distracting those who did not want me here, there would be some progress made to spread the word and fight for a cure or some answers. That has not happened, but I still hold on to the hope that it will and that maybe my daughters or your daughters will not have to suffer the same fate. I am not a pervert, not a creep and get no joy from the suffering of others. I will not post here again, just wanted to try and clear the air. Please, help eachother and keep trying to bring attention to Vulvodynia. Shying away from publicity, being too embarassed because it is such a private, sexual subject, will never accomplish anything good. Force yourselves to invite good men into the discussion so they can better understand your ordeal. Best of luck to All. Frank
CommentTo CAROLYN; You took the thoughts I had this evening and got them posted before I could. I also, first am not afraid to say that I am not comfortable with a male posting on this site, also I agree why xxxxx did not post her name. Why would anyone feel the need to use an alias. He is right, let's not waste our time on this. If she xxxxxdoesnt want to post here that's fine. I have some women I speak to on personal e mails and they agree no male should be on this site. His wife is the on with the problem. I think the concept of an person using an alias is not out of the question but I for one agree no male should be on this site, I also am hoping that KEP will post her tips. Our concern should be helping each other not worring about Frank, Tom or whoever. Get over this thing and lets stand together and concentrate on the real issues her. Our helping each other. Thanks Carolyn for having the courage to stand tall. Anne
CommentA quick summary about “my vulvodynia”: The onset was at age 23, after the worst yeast infection of my life (which actually caused cervicitis, or inflammation of my cervix). I was mistreated with antibiotics over and over again, which made things much, much worse. I was also given all sorts of irritating topical antibiotics and antifungals and steroids. I then ended up contracting a UTI, and that was the end of me…. In addition to constant burning and rawness, I developed urinary symptoms—frequency, difficulty initiating a stream of urine, difficulty completely emptying my bladder, bladder pain and pressure, difficulty passing stool. I couldn’t sit. I couldn’t wear jeans I also had the thickest, most profuse discharge—yellowish, greenish, snotlike. Soon the burning sensation spread to my rectum. I was miserable. To try and be brief (I saw MANY doctors and had MANY tests), I ended up being worked up for interstitial cystitis, and my cystoscopy was negative for bladder wall changes. Several gyns who specialized in infectious disease ruled out any further infections. I consulted Dr. Glazer, who found my vaginal muscle tone not to be hypertonic (although I think that before that eval, I did have some major issues with pelvic spasm), but weak, and consistent with a dysthetic vulvodynia pattern. Due to my history of chronic inflammation, he referred me to Dr. William Ledger at Cornell in NYC. He did genetic testing and found me to test positive for an IL1RA genetic polymorphism—basically my body doesn’t produce enough of one of the cytokines, or chemicals, to stop the inflammatory response. We tried all sorts of things, but none worked. OK, here is what did help. I must say that it was no ONE thing that made me better, it was a combo of everything. There are no miracles. There are a lot of different components to the pain and this disease---muscle spasm, irritated, hyperresponsive nerves, inflammation, psychological distress…I had to address them ALL. Please note that I am not cured, but better. Also note that this is what worked for ME, and it took me several years to figure out. With time and patience, you will figure out what works for you. 1) Avoid constipation and straining to urinate and defecate at all costs. Pushing causes your pelvic muscles to go into spasm, which makes the pain much worse. I did do some biofeedback (which initially made me much worse)—didn’t cure the pain, but did help me control my muscles better (and have stronger orgasms). I haven’t done it in years, and I notice how severely weak I am again. Heat is also great for spasm. Soak in a hot bath twice a day for a few minutes for several weeks. I did see a PT—myofascial release techniques helped somewhat for rectal trigger points, though I was not in therapy for as long as I needed (due to change in insurance). 2) I didn’t realize it at the time, but I became very depressed. I was crying all the time. I tried Effexor initially for pain relief (which it did not give me), but then noticed that I stopped crying. I stayed on it for about 2.5 yrs before weaning off for mental stability. I also saw a counselor who worked on psychological pain management techniques with me (relaxation, positive thinking, meditation, etc). 3) GET ENOUGH SLEEP. Exercise. Stretch. Manage your stress constructively. It sounds so simple, but when you’re in chronic pain, these things really, really make a difference. 4) The National Vulvodynia Association is a great resource. I joined and the leader in my area called me and spend over an hour on the phone giving me (as a newbie) tips about how to pursue a proper work up, good doctors in the area, treatments that are traditionally tried, as well as lots of words of encouragement. It made a huge difference. 5)The thing that made me be able to resume sex was doing intravaginal capsaicin treatments. Capsaicin is the ingredient in hot chili peppers. I received this tip from another woman my age on this website who also saw Dr. Glazer, and had the same genetic polymorphism. WARNING—THIS IS A VERY PAINFUL TREATMENT!!! But you do eventually get somewhat “used to it” the more you do it. It takes several weeks to start to notice relief. Initally you start once to twice a day, and after several weeks/months, may be able to wean to a few days a week. I sent a rx for capsaicin in acid mantle 0.025% cream, 30 grams, to a women’s compounding pharmacy (phone 610-933-0920). It costs about $50 to fill (is mailed to you), and lasts forever. I basically look at my crotch in a mirror, then apply a pea sized amount to the entrance of the vagina. I then pull up my pants and stick an icepack covered with a tissue in my panties (to diffuse the extreme burning caused by the cream). The cream stays on for 15-20 min. (in the beginning, it was so painful, I could only lay still on a bed and think about puking. Now I can walk around the house and do chores or sit and watch TV). Then you wipe it off with a dry tissue, and then with a wet tissue (repeat a few times gently). This part really burns too. Some people pretreat with lidocaine before the capsaicin, but I didn’t feel that it made a difference. Don’t worry---after about an hour, your vagina will cool down. After doing these treatments on a regular basis after several weeks, I was able to tolerate sex with much, much, much less and even sometimes no pain at all. I can also tolerate longer “sessions” of intercourse. If I get lazy and skip treatments, sex kills. 6) I found an article (J Reprod Med. 2005 Jul;50(7):513-23. Chronic inflammation of the vagina: treatment and relationship to autoimmunity. Thomson JC. National Women's Hospital, Auckland, New Zealand) in which women who had immune issues and vaginitis, who did not respond to topical steroids, were given Plaquenil, and the majority had some relief. Plaquenil is an antimalarial medication that is used for the control of many autoimmune diseases (lupus, RA, etc). Note, it is very slow acting (takes several months to work), and requires monitoring by an eye doctor for potential eye toxicity. Anyhow, I printed the article and brought it to an immunologist, who was willing to let me give it a try. My discharge is about 90 % improved (though it made no difference for my pain). 7) Stay sexual!!! Even if you can’t have intercourse. This is VERY important. You ARE NOT DAMAGED GOODS! Most women can tolerate (and enjoy) oral sex, light touch, or mutual masturbation. And all can enjoy touching and kissing and just being intimate. Be open in your communication with your partner (tell him what you CAN tolerate, or how to modify what he’s doing so that it’s more tolerable for you. Be explicit—it’s hard for a guy to know what your body is experiencing). I also had to stop using any commercial lubricants (astroglide, ky jelly), as they are too irritating and cause yeast infections. I switched instead to jojoba oil. I also had to quit the pill—too many yeast infections. 8) For yeast infections (which I now rarely have), I make my own boric acid suppositories (put powder in a gelatin capsule and insert into vagina at night, wear panty liner next am), and use a few nights in a row. I’ll also use boric acid as a preventative if I’m on antibiotics. 9)Good books: Dr Glazer’s The vulvodynia survival guide, David Wise and Rodney Anderson’s A Headache in the Pelvis, Isa Herrera’s Ending Female Pain: A Women’s Manual. 10) Keep a sense of humor. Make jokes. Be open. Talk about this with friends or family. 11) I no longer regard this pain as something to “cure” but something to cope with . I have good days, I have bad days. Certain things make me flare (inadequate sleep, stress, ovulation, my period, rough sex)—I’m aware of them, accept them, and remember that flares do eventually come to an end. OK, sorry this was long. I’m sure I have many more tips, but this is a start….
CommentTO KEP; THanks for all the info. It wll take me awhile to reread it and see what I can use from it. I am over 55 so I dont get my period. Sex is none for about 4 years. I didnt see you mentioned at anytime did u have any spotting?
CommentKep, Thanks so much for your tips you posted. I am sure this will help a lot of us one this board. Like you I have had this for years I had tried a lot of thing you have listed and so much more. I have vuvlodynia and now PFD for about 2 years. I find the warm sitz bath help with PFD, and lidocane before sex and tring to aviod sitting. I had a question for you do you have pain with sex or pain after sex or both? The intravaginal capsaicin treatments sounds brutal it makes me burn just thinking about it! But I am glad to hear it helped you so much! How long have you been using that form of treatment? I am will to give anything a try! Sex is one of my biggest issues right now. My pain is mostly after sex it last days to weeks. If I use lots of lidocane and have very short sessions of sex sometimes I have no pain at all. But rough sex is like out of the question. Thanks so much for reading!
CommentTo answer questions--My pain and burning is constant, though worsened by touch (after sex is the worst). I've been doing the capsaicin treatments for over 3 yrs. And no, I don't really have vaginal spotting (meaning bleeding?) other than as related to my usual menstrual cycle. Also, I'll add that I've also tried the following (without much relief, though I'll admit that I never got to very high doses on the antidepressants/anticonvulsants due to not liking the side effects): elavil, nortriptylline, neurontin, effexor, cymbalta, lidocaine ointment, accupuncture, chinese herbs, gluten-free, sugar-free, dairy-free diet, low-oxalate diet, flexeril, celebrex, kineret, vaginal estrogen, diflucan, singulair, topical steroids, emu oil, alognot supplements, fish oil...what else???!!!
CommentTo Carolyn: I am in complete agreement with you about a man posting on this web site. If a man in the medical field were to do it I think that would be great. Someone like Dr. Oz or preferably a specialist in vulvodynia. I am sure that will never happen. Getting advice from Frank, no matter how well intended it was, would be like me calling a handiman in to do electrical or plumbing in my house. Any person, man or woman, must have some training in their field. The women on this site don't give advise but we exchange our experiences and pass along what has worked for us. Different things work for different people. Like the saying goes - one size don't fit all. Since Frank doesn't suffer from this problem he has no reason to use all those meds and creams or anything else our doctors write prescriptions for and send us on our way. If he really wants to help I think it would really boost his wife's morale if he encouraged her to post. I know I am a different person since I discovered this web site about a year ago. Its just great to post or Email others. I don't feel so much alone. Anyway Carolyn I admire you for taking your stand. If I were Frank I would feel weird being the only husband posting. If it were my husband I know I would probably shoot him (just a figure of speech). I know Frank just posted saying it was his last time doing it. Frank please have your lovely wife get on the internet and I am sure we would all be so happy to exchange what we have been doing. Very few of us are being cured but take it from me talking to other women that are suffering from this horrible vulvodynia will help her mentally. It gets us all down at times. Before I finish up here I would like to ask XXXXXXX where she comes off accusing someone of using different aliases. That is downright absurd. It would never occur to me. What would be the purpose. We will never meet in person so I don't get your point. You are not even a stand up woman. You are using the alias of XXXXXX.
CommentKep- It looks like you tried it all! The only thing I haven't treid is botox which I am going to be tring hopfully this month. I see a specialist that does it. Its a fairly new treatment for vulvodynia. Hads anyone tried botox? Or know anyone with this that has. I am scared to do it but feel that I have tired all drugs, onitments, and accuputure and chinnese herbs also with no relief. I am thinking of tring the capsisan treatment.
CommentKep- have you tried Botox injections? Or trigger point injections?
CommentTo KEP, Thanks for posting your ideas! I have been dealing with VV for at least 9 years and have tried "everything" too. You, however, are the first person to ever mention Plaquenill. Surprisingly, I have noticed an improvement in my VV since starting on Plaquenil in September for RA. I assumed the improvement was due to the relief I felt as a result of deciding to end a very stressful marriage! Perhaps the stress-relief and RA medicine is the perfect mix for me...I pray so!! Thanks again for helping me make the connection!
CommentNo--never tried trigger point injections or botox. If you give it a try, let us know how it works out. Good luck!
CommentTo Laura - I had trigger point injections and did absolutely nothing for me. I also had two different kinds of nerve blocks and again nothing. The last time I saw my ObGyne she asked me if I ever considered botox. I have been doing research on it and it sounds encouraging for vulvodynia. I would gladly pay to have it done if I knew someone had tried it and it worked. Money is tight right now with us and I doubt my insurance would pay for it. I, like almost everyone else on this web site, have tried just about every antidepressants, creams and everything else out there with not a lot of success. I was considering the neurostimulation implant that the dr. at the pain clinic thought might work for me. There would be surgery involved so I have decided to hold off on it. I wish I knew someone that knew something about it but I am still at the stage that I can't talk to anyone but my husband about my pain and burning. Thank God for this web site. If you get the botox I wish you the very best of luck. I am not afraid to try anything if my insurance would pay for it. A friend of mine gets real bad migranes and she was waiting for botox to be approved in the U.S. for that purpose. Hope this might be something that will work. Please let us know when you are getting it done.
CommentI am going to a special pelvic pain clinic next tuesday I have been waiting months to get in. He does the botox injections but I am not sure they will do for me till I go. I HOPE! I heard some insurance are approving when it not used for cosmetic reasons. I guess the approvel process takes a while. I have read on the IC network message board some of the ICers have VV also and they have had some sugcess with the botox. Well I will keep you guys posted on what he says! I notice it hard to find a doctor that does the botox for VV because its fairly new.
CommentI'm 21 and was diagnosed with vulvodynia about 5 months ago, though I have experienced symptoms off and on for the past 3 years. I started dating my current boyfriend a few months before I was diagnosed. While he has tried his best to be patient and understanding, he makes me feel guilty and ashamed sometimes. He won't say it, but I know he wants us to be doing more sexually. What makes it even worse is I'm a virgin while he is not. I feel frozen and stuck when it comes to doing anything sexually. Whenever we have done anything physical, I can't do it for very long and feel awful for the next couple of days. I don't know what to do. I feel confused. frustrated, and depressed
CommentMEG- Sorry to hear you have been DX with VV, but are things that can help painful sex. I use lidiocane cream 5% my GYN has in compounded for me at a compound pharmacy. I put it on 10-20 minutes before sex let it soak in and I have A LOT less pain afterwards. I would also have him go slow... I know TMI but this helps also! Rough sex is just too much for the nerves. There is a another girl on here that has had VV for 9 years her name is "KEP". If you scroll up a little she lists a compound cream that has helped her with painful sex. She tells you all about it her post. Hope this helps wishing you pain free days ahead!
CommentHi Meg, so sorry when I read about someone so young having to deal with vulvodynia. I am a lot older than you and have my kids already. Being a virgin is nothing to be ashamed of. It sounds to me like the pressure you are feeling from your boy friend even though he is not giving you an ultimatum to have sex could be making you more anxious. I know stress plays a big factor in my vulvar pain and burning. Its always there but when I worry or stress over something the burning is awful. Having sex doesn't hurt me too badly but I hurt like hell for a few days afterwards. I was a virgin when I got married but things have changed a lot since then and now everyone thinks its the norm to have sex on the first or second date. Does he know about your problem? Unless you are really crazy about him you may have no choice but to let him go. I know men need sex a lot more than women so you are the only one that can make that call. It might help if you talked to a therapist because I get the feeling that you are afraid of having sex. Good luck to you. Keep reading the posts in this web site. They have helped me tremendously.
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CommentI had my appointment with the pelvic pain specialist today for all you wondering about the botox he did recommend it becasue I have tried all other treatments avaiable for this this. He diagnosed me with vulvodynia, pelvic floor dysfuction and vestutibitus. I will keep you guys posted on if the botox helps. He says it will take a month or two to see if the botox will help and the the effects of it if work should be 3 months.
CommentLaura - thanks for your post about your pain specialist recommending the botox. Very interesting because one of my doctors asked me if I ever considered it but another specialist told me it would just give me more problems than I already had. When are you having it done? Does your insurance pay for it? I wouldn't have a problem with it if it helped for 3 months and had it done every few months thereafter. I am very interested in how it works for you. I will pray that it does. Please keep us posted. I am ready to try anything. Good luck and God Bless.
CommentThanks for responding to my botox post. Can I ask you where your pain is? is it a burning pain? what is your diagnoses? sorry so many questions! I know its down there is it more on the surface skin pain or more in the bones and muscle. I have heard depending on location of pain can determine if botox will work or not. It is a fairly new treatment for pelvic pain but my doctor has had sugcess with it. The doctor thinks the insurance will cover it cause he has done a presentation at my insurance company the explained how botox is and effective treatment for pelvic pain. Plus he has had people with my insurance get it approved. But he has to write a note to the insurance company he says he hoping to do the procduce in a few week. So if the insurance pays and it all works out I will KUP. I am scared the botox will make it worse but I am like you willing to try anything it this point. Take care!
CommentHello ladies, my name is Desiree i've posted on here before. I'm 16 years old and i have vulvodynia & vestibultis. I have just recenelty been diagnosed with polycystic ovarian syndrome (PCOS) If you have this condition please email me at cuteangel1029@yahoo.com i'm really interested in what other woman have tried. THANKS GIRLS! =]
CommentHello, I have read that topical gabapentin (brand name neurontin) has been quite successful in clinical trials for vulvodynia. I cannot get it in the UK, does anyone know if you can buy it in the USA or is it still in the clinical trial phase? You guys in the USA talk about compounding pharmacies that make up special things, but I don't think we have those or anything similar in the UK (If I'm wrong I would love to know!). Thanks Becky
CommentHello! I was wondering if anyone knows any GYNS in florida who will take certian tissue off down there to help with vestibultis?!?!??! if you know a good doctor in Florida who does this type of operation please email me. thanks God bless
CommentHello Ladies. I was just curious if any of you have taken Neurontin. If you have, please let me know if it has worked or not, and if you had any side effects. I was just put on 300mg. Thanks!
CommentHi Jen -- My neurologist took me off Elavil and put me on Neurontin. She started me on 400 mg a day. I took it for 2 weeks and it wasn't doing anything for me. When I went back to her and told her she said not to worry we can keep increasing it up to 3600 mg a day. That amount of any med with my xanax and blood pressure medicines I take scared me. I told her I was afraid of the side effects so I stopped the neurontin and went back on the Elavil. I understand that the mg on meds are rated differently. Maybe 3600 mg of neurontin is no stronger than the 100 mg of Elavil I take. Anyway in my mind I would be walking around like a zombie all day. Every doctor I see wants to put me on a different drug. From going back and reading posts from others on this site there doesn't seem to be anything that really works well. I find it very discouraging. I have tried nerve blocks, physical therapy, different meds, etc. I am waiting for the results of the botox injection that another person is waiting for her insurance to approve. The neurontin might work for you. Good luck!
CommentHi all, I used to check in all the time. But a few months ago my sister was diagnosed with breast cancer and I took some time away from everything (she passed away in Jan). Here's the crazy thing, you'd think that all the stress and sitting at hospitals would have made the pain worse. But for the month I took away from work, I was pain free. No meds, no lidocaine, nothing! Now I'm back at work and the pain is back. All I can think of is it's the way I'm sitting. I asked my physio, but she siad sitting is sitting. Well, i don't know but I'm going to try one of those crazy kneeling chairs. Question for those of you who use the lidocaine at night. How do you soak a cotton ball? My lidociane is really think. Do you dilute it with something? And how many nights did you use it before noticing it helped? Secondly, still trying to convince my doctor to try the topical gabapentan (or one of the other) since I couldn't use the oral. Anyone had any luck or heard of literature I could show him? Adi
CommentHi Adi, I found your post very interesting. First I am sorry you lost your sister. That is a hard thing to go through. I have vulvar pain and burning for about 18 yrs. Did all the meds, pelvic floor therapy, nerve blocks, you name it I did it. Six years ago I was diagnosed with malignant melanoma. For a year I was on Interferon (the only treatment available for melanoma) and paxil. Both very strong drugs. Didn't think I would make it but thank God I am cancer free. Looking back now I never gave a second thought to my vulvodynia. It was like it disappeared. When I got better it came back. I think we can only worry about one thing at the time. The melanoma was a bigger stress factor than the vulvodynia. Maybe some of those doctors are right - it's all in our heads. Just Kidding. Believe me I will take the lousy vulvodynia over the melanoma any time. I am waiting for Laura to post and tell us that the botox injection worked for her. She is having it done sometime this month. I pray it will be a cure for her. I am ready to try anything.
CommentAdi- So sorry ot hear about your sister. I have tried the neurotin and Elavil compound cream with no luck, but that doesn't mean they won't help you we are all so different. Also tried the lidociane one the cotton ball with the 2% gel I would just soak the cotton ball I found that to be irritating, I sit all day for work and find that that makes it worse also. I sit on a IC cushion you can get them on the IC network website they seem to help. My therpist taught me the tennis ball trick with sitting. So between switching from cushion to tennis ball I seem to some how get through the day. Monica- I called the receptionist thursday that schedules the doctors procedure that going to do the botox. She was like I have E-mail him a few times with no response (he is a busy guy so she says!) he has not even submitted the letter to my insurance yet it has to go through her to be sent to my insurance. So she was like I will E-mail him again that you called asking about it. I asked once he submits the letter how long will it take the insurance to decide if its approved she like 2-3 business days. Gotta love doctors.....I hope it happens soon I am going on a business trip for work at the end of May. I have been using the Capasion compound treatment ( the pepper cream) the kep said that helped her I am think I am getting some results with that. Well I will KUP on what happen with the botox!
CommentSimple vulvodynia solution/remedy/cure (that worked for me) I'm so excited to have finally solved my problem that I need to share it with all of you, because I, like you, suffered SO VERY MUCH and I was so desperate for a solution! Unfortunately there are too many wrong, confusing, even dangerous suggestions online about crazy or expensive treatments, like surgeries, anti-depressants, oxalate diet, etc. when the solution is so simple, yet it eludes everybody. I am proof that vulvodynia can be treated very naturally, easily and FREE at home. I'm going to post this on as many boards as possible, so that, if my story can help somebody, at least my pain has had a purpose. I had vulvodynia for almost a year, so bad I couldn't wear underwear/pants, sit down or go by bicycle. As if it wasn't enough, months after it all began I ALSO started experiencing what I can only explain as urethral spasms (those are actually worse than the vulvodynia pain, because they always came unexpected). I thought there was something wrong w/ my urethra, I even went to a urologist who couldn't understand what I had and didn't find anything wrong w/ me but nonetheless gave me antibiotics which turned out to be totally useless & unnecessary because, as my gyno confirmed, I didn't have whatever strange invisible infection the urologist thought I had. Brilliant! Anyway, after lots of research online, I realized it was possible that vulvodynia could simply be a muscle problem, so I finally went to a pelvic floor therapist, who confirmed lots of things to me. She did some manual trigger point therapy (which you can do yourself), but mostly what I got out of my experience with her was hope that it could be treated, which was the most important thing to me as the pain was driving me insane. Therapy helped a lot, but as I am unemployed I couldn't afford more sessions. Well, at least I knew for sure it was a muscle problem and nothing else, as I had already experienced an improvement thanks to her. See, the reason that doctors can run millions of tests on all of you and find nothing wrong/related to the pain is because vulvodynia is simply caused by the SHORTENING of your pelvic muscles due to the trauma of, say, an infection, accident, bad posture, bad habits, scoliosis, or even just stress...you name the cause, you're probably right. Those poor, stressed muscles have contracted to the point of causing internal chronic spasms (whether you feel them or not), which tug at your nerves, thus giving you pain! The secret to reverse it, then, it's simply to LENGHTEN the muscles back to their original shape, by stretching them. I, by the way, requested a fantastic book from the library ("Heal Pelvic Pain" by Amy Stein) which explains all of this in detail. You should look into it, too, if you are looking for more info about how numerous pelvic disorders are simply caused by the shortening of the muscles & by trigger points (she explains how to do trigger point therapy -which I love- on yourself, however I found that the stretch I "invented" was enough to make the trigger points go away on their own!). One of her most useful pieces of advice was the part about "dropping the pelvis": until I read her book I never thought/realized how super tense my pelvis always was. Catch yourself anytime and you'll see that if you have vulvodynia your pelvis is all tensed up, drop it! (It's the same feeling as when you have finally reached a bathroom after holding it in for a long time.) Make a conscious effort to drop it/relax it/let it go as often as possible until it will become normal to you again. (To better understand what I'm talking about, see her book.) I did the long routine of stretching exercises (for different parts of the body) that Amy recommends however I felt none of them were really specific enough to solve the problem, or at least I wasn't feeling any difference fast enough (I'm kinda impatient)...so, as I am unemployed and I have a lot of time on my hands, I started mulling over where the problem was specifically arising from...I thought: it's not my back, or my butt, or my thighs,... my urethral spasms & vulvodynia pain MUST stem from the front of my pelvis (the area below my navel). Well, then! Those are the muscles I have to lengthen! So I created my own (easy) specific stretch exercise, which amazingly accomplished the job very quickly! I felt immediately better the first morning (I had no more urethral spasms! What a miracle!). After 2 days I was already MUCH better, and after a week my vulvodynia was virtually all gone! The longer you do it, the better. It's something you can do as a tune-up once in a while, too. THE SOLUTION: This is done in bed for as long as possible while you read or watch a movie (you'll know when you've had enough), you can get up once in a while if you really need to move around. (I guess you could try it on a table too, I used the bed as it's more comfortable and you can stay there longer.) On the VERY EDGE(<-important!) of the bed, without falling, put as many pillows as possible under your pelvis (it depends on how high your bed is, mine is pretty low), make sure you have some support for your back, too, if necessary, in order to be as comfortable as possible (you'll figure it all out on your own), but the important thing is that your pelvis needs to be a little HIGHER than your back TO CREATE AN ARCH! Then, let your legs hang from the edge of the bed, creating as much of a backward arch --between your thighs & your pelvis-- as possible. Simply lie there and feel the muscles of your pelvis and lower abdomen S-T-R-E-T-C-H. It's very easy. I even extended alternately my legs for further stretch of the pelvis, one leg at the time as much as possible. I did all of this while reading, so it's no big deal, it actually feels good. (I have a tile floor so I used a towel under my feet to made the sliding easier). This is all folks! Let me know if it works for you. If not, get Amy's book and try her stretches, maybe the muscles that you need to lengthen are not the same as mine. It depends on where your pain is, I guess. FURTHER ADVICE: #1 Months ago, when my pain was the worst, I noticed that the only thing that cut my pain in half was drinking a whole stalk of celery juice. Within hours it gave me so much relief! It might be for the same reason that celery is good for rheumatism (I don't have it), I'm not sure why it worked, all I know is that celery juice surely was a huge help! And it went to prove that my vulvodynia had nothing to do with too much oxalates, as celery is high in oxalates! If you strongly believe that your vulvodynia is caused by oxalates (very unlikely from what I've read) I highly recommend that before embarking on such a restricted, crazy diet at least you bother to get a test to confirm whether your oxalates are off, most likely you'll see the test will show everything is normal! #2 As my therapist and Amy Stein say, do NOT do kegel or similar strengthening exercises until the pain goes away first! The problem is that exercises such as kegel actually tend to further contract/shorten the muscles which, in the case of vulvodynia, are already too tensed up to begin with! The exact OPPOSITE needs to be done, instead: RELAX them! #3 Do NOT constantly touch/mess with the area that bothers you! As my therapist said: if you keep on pressing on a bruise, you are preventing it from healing! #4 Also, as much as possible, try NOT to think about it, I know it's really hard, but you need to rewire your brain so that you DON'T constantly EXPECT pain from that area! Otherwise you're keeping the pain alive through a self-fulfilling prophesy.
CommentANNA, I am very interested in the things you stated in your post to all of us. It has been a long time since I posted here but your excitement has inspired me. I tried to e mail you but it wouldnt go thru. I have the vulva burning under control but I feel I have damaged the muscles in my butt area by trying to compensate for the V area. I would love to talk to you by e mail until i an get the book but your e mail would not go thru
CommentDoes anyone know a Dr. and pelvic floor specialist in the los angeles area. thanks
CommentHi Monica. Thank you for responding to my post, and sorry it's taken me so long to reply. It's been a horrible 2 weeks on this Neurontin! I started taking 300mg 1x a day, at bedtime. Then after a week of having no relief, my Dr. upped me to 300 mg. 2x a day. So that's what I have been taking now and I am miserable. I seemed to have more relief with the Elavil. Not to mention the side effects I am having with Neurontin are not fun either. I am nauseated, dizzy and off balance at times, and I am so tired! I can't function like this! I have 2 little ones. I will not drive because I am afraid. So I plan on calling my Dr. tomorrow and having him switch me back to the Elavil. The nurse told me to give it some time and that sometimes the side effects go away with time. But I don't want to wait around any longer. The reason he switched me in the first place was because he wanted me to have more relief than I was having with the Elavil. How are you feeling?
CommentHi Jen - Glad you posted back. I am on 100 mg of Elavil at bedtime. I don't know what it does for my pain but it allows me to sleep at night. I won't take it during the day. I did by mistake one time and I was like a drunken sailor. My son treated his father and me with tickets to see the play "Wicked". I took it by mistake instead of a blood pressure pill. They are the same color and I wasn't paying attention. I slept through the whole play. I could never tell him that. I just pretended that I loved it. I am very careful if I have to go to the washroom during the night. During the day I take xanax. 1 mg 3 x day. I started out years ago with the lowest dose and it has helped me live a kind of normal life. I am trying not to increase it any more because the meds give me big time constipation. I gave up driving about two yrs. ago. You have to be very careful with 2 little ones. I saw a post on another web site that the only relief she got was from valium. That is much the same as xanax. I am waiting now for Laura to get the OK from her insurance for a botox injection. We all hope that something comes along soon. Until then be careful. I think doctors are compensated by the drug companies and are ready to give us anything.
Commenthello all
CommentI am 21 years old, have been married for 3.5 years. Was unable to have intercourse without extreme pain for entire marriage. Was diagnosed one year ago with volvodynia, my gynecologist gave me a brochure and offered extremely strong antidepressents that could shut down the pain receptors. My husband is a pharmacist and we decided that we would struggle through without the meds. I have recurring bladder and yeast infections that usually take a month of antibiotics to kick. I am 10 weeks pregnant right now, I am wondering if anyone can give me insight as to whether I should be having a c-section???
Commenthey ladies please go here and fill out this form! We need to be heard! http://www.cfids.org/pain-campaign/default.asp
CommentHello, Anna, Thank you for your post, I can't wait to try your exercise! If I understand correctly, it's like you are sitting on the pillows on the edge of your bed and then you lie back and travel your legs forward over the edge of the bed so that you get a good lower tummy stretch... Is that correct? I think that some of my pain comes from my tummy. It is always very sensitive. I see a wonderful pt but I found that I had hit a plateau so I started seeing a chiropractor who is trying to loosen my pelvic floor and it is helping. I have had 6 sessions so far (once a week). I have also read Amy Stein's book which was recommended by my pt. Another alternative to doing the long exercise routine in the book is yoga. I tried doing the routine once and realized that I was getting more out of doing yoga. Another thing that caught my attention in your post is that you mentioned that drinking celery juice reduces your pain... Juicing vegetables greatly reduces my pain. I don’t always juice but when I do; I really notice an improvement in my pain. If I juice or eat vegetables I always feel so much better. I wonder why that is? Has anyone been noticing pain when eating certain foods and if so how long does it take for you to feel pain due to what you ate? Sometimes I feel discomfort while eating specific foods and wonder if I'm just imagining this... Does this happen to anyone else? I have had v for 2 and a half years now. This is the first time that I write in the guestbooks. I am having more good days than bad but I still have days where everything that I usually do to control my pain doesn't work... Lately, I’ve noticed that this happens a week before my period…I am wondering if anyone else has the same issue. At any other time the pt exercises really do the trick for me.
CommentTO C, CANADA AND ANYONE ELSE. I have amy steins book since I have the vulva burning under control i now have burning down the right side of my butt. I think it sounds like it's the pudendal nerve. I am doing the exercises in her book and I am going to PT who is doing most of the same as amy. Does anyone here suffer from that type of butt pain???
CommentHi Anne-Marie, I have a lot of tightness in that area too. If I sit for too long, it really hurts. For example, if I am sitting in a car for two hours, I feel like I have a cramp in that area. Going to the chiropractor helps to ease the tightness in that area but for me, how tense I am depends on my stress level and if I get stressed, the tightness comes back. The hardest thing for me to deal with is when I get burning and stinging and neither pt exercises nor seeing the chiropractor helps the pain. What I hold onto in times like those is the fact that the pain always ends up fading. (It’s always there but it’s less present)… I'm glad to hear that the pt exercises are helping you!
CommentTO C, CANADA, THANK YOU FOR YOUR RESPONSE. It sounds to me as though you suffer in the same way in the butt area. The Pt seems to be helping but as you said it never goes away. Amy Stein's book let me know that my Pt is on the right track. The original girl on this site ANna, never got back on here. I did try to e mail her but it came back, I dont quite understand how she is describing that particular exercise. But , yes if i sit for more than a few hours my Butt is on fire. I try to think it over and over and to me i feel the muscles and nerve endings were compreseed or damaged when i was trying to work and stay off the vulva cause that is where the original problem started, then the butt thing came on me..Do u think it will EVER leave us??
CommentHi Anne-Marie, My pt told me that the reason we have pain there is because the tissues don't have good circulation and when we sit, the circulation gets cut off... I truly hope that we will get better someday... Do you have someone to talk to? Talking to someone really helps me cope with the v. The therapist I see specializes in helping people with pain.
CommentTO C CANADA, Hi again thanks so much for the response. my Dermatologist helped thru a lot of the V pain, I can talk to my husband and a few friends but no one really knows unless they have it. That makes sense about the poor circulation. I got some wonderful advise 2 years ago from someone on the site but i was really over the edge when i first got the V burning I guess i scared her off. But she gave me some great advise. I now have the bUTT pain and I feel i did that as i mentioned before. Did you have V burning also or just the Butt. Thanks so very much
CommentHi Anne Marie, Thanks for responding to my e-mail... I have butt pain, v pain... the v pain fluctuates, and I used to have rectal pain, I was sure I had parasites at first the pain was so bad! That pain drove me mad but it's not really an issue anymore. I also had bladder urgency at the beginning but that also isn't much of an issue anymore due to the pt and a change in diet... I would love to get pregnant but sometimes I worry that the pain will get worse...
CommentTO C CANADA, I read back to your original post and you stated you have had V for 2 years. so have i..Do you use any cremes or medication topically?? Maybe we should e mail privately...
CommentTo Anne Marie, this is my first time posting. I have been suffering from vulvodynia for some time and check this web site all the time. I have been to a lot of doctors and have been on lot of different antidepressants. Not one of them has helped me very much. I get a lot of information from reading the posts on this terrific site. I don't feel so dumb when I go to a doctor who gives me the impression that its all in my head. I know from all of you out there suffering as well that I am not alone. The reason for my post to you is your request to C Canada to email privately. Sometimes several days pass and there is no activity on this web site and I am just afraid if women start emailing privately it will deprive the rest of us of important information. We need all the help we can get. I am always wondering about the lady that had considered the neurostimulation. Did she have it done? Was it a success? I guess I am just afraid that if someone finds something that greatly helps them they will stop posting. I know I don't have any right to voice my opinion on what other V sufferers do but I want to read about your problem even if its a little different from mine. We have to stick together and do what we can to find a cure. Anne please don't take this personal. To ANNA, thank you for taking the time to give us all that info. Amy Stein's book is on its way to me from Amazon. God Bless!
CommentTO JOANN, hi i just wanted to explain why i asked C,canada to write privately. sometimes I feel we are not really comfortable about a lot of things. And we have a lot of questions back and forth..I do understand your concerns because I also have had people post and then stop. I am waiting for Amy Steins book also and I already have the V book which was very helpful. TO C,CANADA please dont stop posting I feel You and I have a lot to talk about along with you Joanne...thanKs so much
CommentHi ann marie, I would love to send you an e-mail if you feel comfortable enought to post an e-mail address on the site. To Joanne, Congrats on getting Amy Stein's book, I hope it brings you relief. I started seeing a pt first and then bought the book. I think that it is good to have someone coach you if you are going to start doing the exercises as your body might react to them and it's always good to have a specialist telling you whether or not a reaction is normal or what you can do in such and such a case. I guess a good example of that is when you get a backache, if you get a massage it might hurt at first because the muscles are tense but the longer your back gets massaged, the better you feel.... I hope this helps you.
CommentTO C CANADA, GREAT my e mail is amzy46@gmail.com I am looking forward to hearing from you. We can both keep posting if we find something that we discover to help the others on the site. Looking forward to hearing from you.
CommentTO JOANN, Hello u stated in your post that you have had V pain for several years. and have been on lots of medications that didnt work. Do you have a burning or itch or stabbing pain. I have burning and I use a steroid and hormone creme but that does not help The BUTT pain I now have. The PT thinks it is the Pudendal nerve that is burning just like a sciatica. Please get back to me if you would like to.  |
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