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 |
