      |
|
|
 |
View our archived
guestbooks here
Contribute to the current guestbook here PLEASE NOTE |
|
CommentWelcome to the 25th vulvodynia guestbook hosted by www.vulvodynia.com I appreciate your continued participation in the site and hope it is a productive and helpful experience for all who participate. Your website host Howard Glazer Ph.D.
CommentI was treated for a year for a yeast infection. Finally referred to a very good skin specialist and found an answer.
CommentI have been reading the guestbook for the past couple of months and have written in a couple of times. I have found all of the entries very informative and helpful. I have been dealing with vulvodynia for the past 8 years and have been searching and searching for some relief. I have read some previous entries from others who have consulted with Wendy Fellows, who suffered from vulvodynia herself and now is pain free. She helps many people to live a pain free life. After trying several medications and having almost weekly appointments with different doctors, I decided to contact Wendy. She was very nice and extremely knowledgeable about vulvodynia. She answered all of my questions and offered advice on nutrition as well as supplements. I had so many questions about what supplements to take, when to take them and how much. Also, I didn't know which foods were OK to eat. Unfortunately, my doctors did not offer any advice in these areas. They were very quick to mask the pain with different medications. I wanted to find a long term solution, which is why I decided to contact wendy. I started taking the supplements and following the diet tips this week so I will let you know how it goes. Wendy has offered me a new sense of hope that I will someday beat this thing. She was very inspiring. You can learn more about Wendy at www.vulvadyniahelp.com I will let you know how it goes. My heart goes out to everyone who is dealing with this.
CommentLiz, I can totally understand your frustration. I too have been plagued with fears that my boyfriend will leave me or cheat on me because we can't have sex. We have only had intercourse a few times this past year, and each time ended up with me in tears. I really liked what Sarah, and also KP said, in recent posts - that intercourse is only a very small part of sexual expression, and that there are a lot of other ways to be intimate. My boyfriend and I have to be creative, although I rarely have a sex drive because I am always afraid everything will hurt. Believe me, though, I can relate to those fears. Thanks also to everyone who offered me support last week when I was upset over having a bad flare. I am feeling better, although not as good as I was for about a month. I have gone to 2 physical therapy sessions, so we'll see how it goes. It's still hard for me to comprehend that muscle problems can lead to external stinging, burning, etc. I just hope that it helps!
CommentTo All: I received an email today which started. Hi Frank, I just read your email on the Vulvodynia.com guestbook. Like your wife, I also have Vulvodynia - but I no longer suffer from symptoms. I read the rest of the letter and did visit the site mentioned. My opinion is that some women who suffer some symptoms ov vulvodynia "may" benefit from some of the information and products offered. I still find it cruel and misleading to say "How would you like to be painfree?" when there is no cause or cure as of yet. Who would not want to be pain free? Whatever caused the recurrent tear to my wife's vulva has not been helped by estrogen cremes and I am sure nothing offered on this site will be any different. Those of you suffering with pain possibly caused by nerve damage or trauma probably wil not be relieved by a low oxalate diet and supplements. I don't like the wording and message but best of luck to those of you who have received this email and decide to give their products a try.
CommentThanks Heidi - it is nice to know that someone is thinking of me. Sometimes I just feel so alone and despterate and hopeless. Just wondering - how long to people generally stay on each dose of elavil/endep before they increase their dose. My recollection of the first time i was on it it was something like 5 days.
CommentHeidi--thanks for your message. I'd love to get the name and phone number of your doctor at the pain clinic. Please feel free to email me at my address. I could also send you my telephone number once you email me if that's easier. Thanks so much! .
CommentHi everyone. My GYN just suggested that I try Vagifem tablets rather than Estrace cream because he feels that often the cream irritates the skin even worse because of chemicals in the base of the cream. Has anyone used Vagifem tablets with successful results? My main problems are burning sensation & irritation after sex and urination. Thanks! .
CommentStacy--yes, I used vagifem, but unfortunately with no results. on the up side, the vagifem did not do much harm... For all you Effexor users--I'm trying to start up Effexor right now, as I know my nerves are inflammed, and Cymbalta helped me in the past. I took a 25 mg pill and had a tough time...nausea, insomnia, hot flashes...I know these are all supposedly temporary...I was wondering how anyone coped with this, what dosages were therapeutic, and how long it took to kick in? thanks...
CommentFor Sarah who posted Feb 14 2006 (luckygirl email address): You mentioned you were tested for allergies etc. through Dr Metzger's office. I'm just starting getting these tests done under Dr Metzger's care (by distance - I'm in the UK). Can you give an update on how the anti-allergy treatments have helped + other treatments you undertook as a result of the test you had done? I would appreciate it. Thanks. Helen
CommentHi ladies! I had today steroid /lidocaine shots to painful aria of vulva. I don't feel any better yet. If somebody did this kind of shots : how long it shoud take to start feel better ? Thanks Marina.
CommentSo glad to see this site! I hope to write more. I have endometriosis, and recurrent yeast infections (more in the past than now).
CommentI know this may sound strange but do any of you use colgate toothpaste, proactiv or hand soap with triclosan? I 'm just trying to put the pieces of the puzzle together. I changed my toothpaste about five months ago because of mouth ulcers. No more mouth ulcers, but now I have the burning sensation and reddness you describe. I've been to the Dr everything is "fine." I have done a little research on Triclosan and found out that it has been band in other countries due to side affects. So look at your labels ladies and tell me what you think?
CommentI FOUND A CURE FOR MY vulvar discomfort/pain which I'd been having for 9 months, symptoms from burning to stabbing. I got a clear bill of health by my OB. I decided to look into more natural remedies than antifungal creams. I came accross this amazing cream called Tetrasil. It's a natural cream (silver). Boy it took my pain away in 14 days!!! I never thought I would be healthy again. Please try it, it's well worth it, costs around $25 per tube (the tubes are small, I would suggest you get 3). Check their website: www.tetrasil.com. Check their testimonials. It works for a whole range of skin conditions. Good luck to you all! Anne
CommentAnne, that product sounds too good to be true. Are you able to have painfree sex now? Pardon me for being skeptical, but I hope you're not just posting this b/c you're trying to sell this product to women who are desperate to try anything for pain relief.
CommentHi there, I am posting this again hoping to find someone who was seeing Dr. Thomason in Milwaukee WI. Its been a while since I contributed to the guestbook, but if anyone was around in 2001-2002 I posted quite a bit back then. For those of you who remember me I have been seeing Dr. Jessica Thomason in Milwaukee WI. Thanks to her treatments I have been about 90% pain free for several years now. I underwent a compleate vulvar vestibulectomy and then PT. I now maintain with Estrace cream and occasional Temovate and Vagifem if needed. Unfortunatly Dr. Thomason retired this year and I am looking for another specialist (not an obgyn that has a little experience with VVS) to replace her and help maintain my good health in the area. Unfortunatly I just do not trust a regular Gyn to treat me, especially with infections. I am willing to travel a bit if necessary. Has anyone here been seeing Dr. T and if so, have you found a replacement doctor? Let me know if you have. You may email me at christina_bunny@hotmail.com. I live in MN in the Twin Cities area and am willing to travel 8 hours or even a bit more for a specialist, so a doctor in MN, WI or even in IL will be fine if they specialize in VVS. Thank you! Christina Bunny
CommentTO KP - I began Effexor recently and have also had a hard time w/ side effects on the 25 mg pill. However, I've found that by taking half the dose, just by cutting the pill in half, and then gradually increasing it - about every five days - I can basically avoid the nausea, etc. I would take half in the morning, half in the evening...then in five days, take 25 in the morning, half in the evening...in another five days, take 25 in the morning and 25 at night (depending on what dose you and your doctor are aiming for - obviously, you should talk to your doctor about whether s/he wants you taking 50mg a day or just 25, etc). Also, drink plenty of water. I haven't yet experienced much improvement of my VV, but it may be too soon to tell. Hope this helps - good luck!
CommentI know this may sound strange but do any of you ladies use cologate total, proactive or hand soap with Triclosan in it? Five months ago I changes my toothpaste because I had mouth ulcers. No more mouth ulcers, just the burning and reddness you all have described. I went to the Dr. all test were "fine". So I have been doing a little research, as I'm sure you all have, but this stuff is in alot of things we use everyday. It is a pesticide and has been band in other countries such the UK. I was just wondering what some of you thought. I stopped uses the toothpaste the reddness is better. Let me know. God bless.
CommentThis message is for anne@yahoo.com. I recently sent you a e-mail and it was returned. I am interested in the Tetrasil that you believe to be a miracle cream for your vulva problem. I noticed that the cream is only topical. How do you use this and how often? I would like to give it a try and would appreciate you letting me know how to get started. Thanks
CommentHello all. Some of you may know me, some of you may not. I haven't posted in a while. I have months and months of good days due to my diet. But anyhow, I still click on this site almost daily to read the post. Years ago when I first developed this horrible disease, some of us had talked about emailing Oprah Winfrey and question that she discuss Vulvodynia as a topic for one of her shows. Many of us (back then 2001 or so) had done so but she has never responded to us. I watch Oprah just about every day and til this day, she has never done a topic about this disease to help bring awareness to it. So today I ask you all to try emailing the Tyra Banks Show. I watch her everyday as well and she has some serious topics that women can relate to and they discuss a lot of female issues. So I just email her at www.tyrabanks@studiofanmail.com in hopes that she will talk about Vulvodynia. I will encourage all of you out there to do the same. Tyra is always on her show talking about how she LOVES to eat and I think that this will be a show idea topic that she wouldn't mind having on her show. So please do so ladies. It doesn't hurt to bring it to her attention. We all know that we all need a cure real soon so it doesn't hurt to try to get as much help as we can get. When I emailed her, I requested that she goes to this web site and read some of the guestbook stories so she can have an idea of what we women are going through. I also told her about the Vulva Pain Foundation and how donations can be sent there to help find a cure. Please do this for US ladies.
CommentTo Lynn, I remember that time when Oprah laughed at the mention of the word and how some of us wrote to her show. I will think of something to write to Tyra and who knows maybe it will catch their interest. Too bad for all concerned including women who are suffering and don't even have a name for their pain, Oprah with her audience might have been a great help but she just doesn't have it in her. Thanks for the suggestion.
CommentI am trying all night to get into the chat room. First I had to register with yahoo. That was fine, but I can't get into the chat room. It talks about all sexual toys, etc, not the vulvodynia support group. Please help me with this.
CommentOprah, seriously, is an idiot. I don't know how that woman can brag about being a Christian, but have no intention of marrying the man she shares a bed with. I am so tired of her celebrity-chasing. Tyra is also annoying. Have you thought about Dr Drew Pinsky, or other such hosts? Start small. My local news had a segment today about how anti-depressants help with hot flashes, more so than soy isoflavones. I will try to think about how to get some more publicity. oprah could also help the millions of women with endo, but I don't think she's ever addressed that either. She needs Kelly Preston to come on and say she wants to help with this cause
CommentI personally don't like Oprah. I just enjoy hearing about the topics discussed. Oh no, I don't really watch any other talk show. When I went to NY to see Dr Glazier back in Feb. I asked him if there were any celebrities that he has seen as patients and he said there are a couple but of course he did not tell me their names. It will help so much if who ever those celebrities are would help bring awareness and or help the VPF with finding a cure by making a generous donation. Anyhow, it is really sad that not too many people are informed. I know when I first found out what it was, It took me about 6 months, then I went to the very expensive Mayo Clinic, they gave me a name but could not tell me what caused it. You all, all my sisters has helped me conquar this disease. The Dr.s don't know much! We have to do our own research, find our own diagnosis as to what the causes are. I know with me, I have leaky gut, low acidolpholus, all that causes food allergies, recurrent yeast infections, high oxolate sensetivities, wheat, sugar and gluten sensitivities.. I mean it's a mess. So I am a 32 year old black woman with 2 kids and is VERY THIN. At 125 lbs, people wonder how I stay so slim and thin. But when I tell them I have food allergies, they tell me that they wish that was their problem so they could be as thin as me. The grass always seems greener on the other side. Anyhow so I just changed my diet basically and take probiotics and of course when I had V V, I had a partial vulvectomy back in Feb 01 and that has allowed me to have painfree sex again. Well anyways goodnight guys. Thanks for all your responses in Emailing Tyra.
CommentHi Lynn, Thanks for all you're doing for all of us with VV, etc... if you have a moment, would you mind emailing me or posting about your partial vulvectomy? I have that scheduled next Monday... (we tried in Feb. but only got one gland out... due to excessive bleeding the doctor had to stop...) I would appreciate any input about your surgery or healing process. Thanks, Heidi hiders@quixnet.net
CommentGood morning Heidi, I know you requested that I emailed you personally about my surgery and the healing process. But I just decided to just add it to the guestbook so that others can hear my story as well. Hope you don't mind. Okay, let's see where do I began. First systems I began having was nerve tingling sensations in the vulva, sharp shooting pains. It took me a while to realize that the symptoms started witin 5 minutes after eating or drinking (even water). The next symptoms I began having was pain in my vestibular gland. The q tip test hurt like hell. The next symptoms I began to have was tearing of the vulva, very dry irritated and I couldn't wash with ANY soaps. The next symptoms I began having was when I ate food (no matter what it was), I would feel burning sensations through my entire body like my fingers, toes, vulva, back and arms were litterally on fire. I knew it was my nerves, but the Drs never could explain the mystery of how food seem to cause these problems. Anyhow like most of us, I've seen several Drs, obyns, neurologist, gastrointestinal, psychiotrist and NONE of them has helped me! Then I just found out if there were any Vulvodynia specialist in my state that could perferm a vestibulectomy on me so my glands would hurt any more. I mean I couldn't have sex, It would hurt and burn when I sat down at work for 8 hours a day typing on the computer/answering phones. So I found Dr. Hatch. He told me about the procedure and the rest his history. Because it was 5 years ago, I don't remember much about the surgery. I just remember after it was over with, It hurted down there and I had to keep ice packs on it like 4 times a day for about 10 minutes each. I remember the healing time took anywhere from 3 to 6 months. Then I could have painfree sex again. I remember my perinium was tender from the surgery for about 1 year. But although I could have sex, I had to be careful of the sexual positions so that the perinium wouldn't tear. Now 5 years later, I could have sex any position. The only thing I know about my disease is to stay away from antibiotics, stay on a yeast free, gluten free and sugar free diet. I know that since I have leaky gut, toxins, yeast will get into my blood stream, colonize in the vulva area and that's when the pain starts again. So that is why I know that I must stay on a diet to keep my issues under control. At the same time, I take probiotics for my leaky gut and that helps too. Anyhow as far as the Vestibulitis that I once had 5 years ago that prevented me from having sex, I know that was due to food allergies, the food that I was eating at that time that first started my issues in the first place was being a whole grain diet. I ate lots of wheat and graines and gluten. I wasn't eating like most peopel eat because I was persuing my modeling career and I just wanted to be healthy and fit. But I didn't that food will mess me up and it did. Anyhow I know that I don't worry too much about ever getting Vestibulitis again because I know to stay away from the foods that caused it in the first place. Have a good day you guys.
CommentHello, I suffered with vulvar pain for the last couple years. I saw many specialists who were unable to help. I had no visible signs of skin problems or infections. I had ALLl the treatments and finally gave up. A few months ago, I began having rectal pain as well and upon palpitation (done vaginally) my pudendal nerves were found to be bery painful. I have seen the cpecialists for this and been given the diagnosis of pudendal nerve entrapment. The treaments for it include PT, nerve blocks, and surgery. I am now scheduled for surgery shortly. The surgery is not something to take lightly and I am in no way advising to hav it done. I am simply stating that my vulvodynia was the result of a nerve compressions and I have decided to try to relieve it through pudendal nerve decompression surgery, which has varying success rates. Had my rectal pain not began, I probably would not have made this decision. I am providing this information for anyone who has vulvodynia caused by nerve pain, especially if you have discomfort when sitting and rectal pain. It may be something to think about and talk with your doctor about. I am also including this here so people know that pudendal nerve entrapment can cause vulvar pain.
CommentRe: Pudential Nerve....I have been suffering on and off for 10 yrs. with VV. This last episode has been going on for a year now.. I am on neuronton and at first it helped, but lately it isn't. I have SEVERE rectal burning and pain. When I have a BM, sometimes I can feel pain. The dr.s say I do not have hemorroids. Could this be the pudential nerve entrapment you wrote about? I am suffering terribly. The dr.s just don't know what to do with me anymore. It is very hard to function with this constant horrific burning and pain. Sometimes the pain is way up in my rectum....that is when it's the worst. What do you think? Could it be this nerve entrapment?
CommentSara, In my opinion (I am not a medical doctor), your symptoms are very consistent with pudendal nerve entrapment. Where do you live? Do you have access to an informed gynecologist or vulvovaginal pain specialist or other doctor who you feel can evaluate you? If you are able to travel, there are some experienced doctors you could see for a full work up. There is some information available on the web, such as at www.spuninfo.org. I believe this condition is widely under-recognized in women as a cause of chronic pelvic and vulvar pain. .
CommentThanks for the quick response on nerve entrapment. I live in Syracuse, NY. I'll start digging for info. on specialists. This last bout of rectal and vaginal pain is so horrific, I just cannot keep on like this. Someone has got to have the right answers for me. I have never had any of the 9 dr.s I've dealt with over the yrs. mention nerve entrapment. They have talked of spasming but not entrapment. E-mail me personally if you get a chance. Thanks again.
CommentI just got married 7 months ago and my husband and I were only able to have sex the first month of marriage. It began to be very painful to the point it was impossiable to do it. I had to wait several months before I went to the doctor because I had no insurance. By that time not only was it painful to have sex, but I also had signs of a yeast infection. I had to take two different treatments for the yeast infection, which cleared up the itching, but sex was still very painful. I am starting a steroid cream tomorrow that the doctor thought may help. I really feel like I have vulvar vestibulitis after all I have read about it. I read something somewhere about a women having what she thought were UTIs and then when the tests came back they were not. I had the same experience twice before sex became painful. I think more so than not being able to have sex, whatever I have is constantly on my mind. I want to tell people about it, but feel I can't. I've told a couple of my friends and they just didn't seem to understand. I have trouble focusing on my work. I really feel bad for my husband, it's gotten to the point where I have a hard time with him even showing affection towards me, because I know where he wishes it would lead to and I usually get upset and start crying. I just feel very frustrated. I feel so cheated.... I was a good girl- I saved myself for the man I married and now I feel useless to him (he deals with the situation very well and has been very understanding- but this is how I feel).
CommentHe Sara and to all of you talking about the nerve entrapments. I know all about the shooting and stabbing nerve pain in the clit, down the legs and all that. It may not necessarily be due to nerve entrapment or pelvic floor muscles. If you get those pains during or after you eat, it could be related to yeast and/or oxolate related foods. I only get those symptoms the MOMENT I eat sugar or high oxolate foods so mine is diet related. LISTEN, you can have yeast all in your nerve tissues that causes the nerve pain, too much oxolate in the blood can cause these pains as well. Or just toxins and chemicals in the food can all get into the bloodstream and your tissues and cause allergic reactions that effect your nervouse system. Like me, it is caused my leaky gut and from low acidolpholus, that is why I take probiotics to lower my food allergies and all that. So find out when it is that you get the pain, if it is when you eat, its most likely diet related. So many of us who has been dealing with this horrible disease and who has been posting and reading on this site for a very long time, we all know that you can still have yeast infections that effect other areas other than the vulva and not show up in cultures. I urge you all to look up Systemic Candida/Yeast infections. You'll be surprised of how much you've learned. Also read up about the Leaky Gut Syndrome as well. This could be your problem. Also most of us have hormonal embalances to. Go get your hormones checked. But for the most part, with me, I just try to stay on a sugar free, yeast free, gluten free and oxolate free diet and take my probiotics daily and I am okay for a long time. I get nerve pain and yeast infections if I just even eat some strawberries. So we all just have to know our limits and be careful and know that we will all beat this disease one day. Our bodies are just out of balance and it is up to us to correct the balance. The Drs ain't gone do it for us. Taking medication doesn't solve our problems. It can only trick our bodies for so long before our bodies begin to reject it. Goodluck to us finding a cure. Oh and someone had mention about a week ago that she couldn't access the vulvodynia chat, well me neither. I have NEVER been able to access it. Well I sighned up for it months ago, but when I log onto chat, no one is chatting and It appears that I am the only one in the chat room and then I get a message saying that they are updating the chat room or some crap. So I just stop waistin my time with it. Goodnight all. We'll talk soon. by the way, FRANK- How is your wife doing these days? Best of luck to us all.
CommentI agree with Lynn that all other possible causes of pain should be ruled out prior to considering merve entrapment. However, yeast, etc. does not account for every problem and dietary changes will not help a nerve problem. I personally have never had a yeast infection. I am trying to help others see that nerve entrapments should be tested for and discussed with a medical professional. I am living proof that a person can have vulvodynia as a result of pudendal nerve entrapment.
CommentOne thing I do know is that dietary changes my nerve problems, but that is just me. I know that we all lots and lots of nerve tissius in our intestinal tract and if we don't have enough healthy flora in there to help fight off toxins, parasites and chemicals that is put in our foods these days, then that is when you nerve tissues will become too overwhelm and gets irritated and causes nerve pain. Because then the tissues gets clogged with yeasts, toxins and so forth and it can't help but to send off nerve signals letting us know that something isn't right. At least that is my case. My nerve pain comes from food allergies, my intestinal tract is off balance due to me taking some antibiotics for only 5 days for an ear infection and because of that, my it is hard for my immune system to fight off infections...I am sorry guys, I am just rambling on about my problems. I just want to help you all if I can. I know some of you may have nerve entraptment and yest you should definately look into that. But I just know what I know and if any of you have any questions, please asks me. I've been dealing with this mess since 2000, had surgery in 2001, beat this deasease by changing my diet back in 2002, Even had a baby in 2003, but when I took antibioitics for JUST only 5 days on Christmas of 05, that's when I felt the problem comming back. Anyhow, good luck to us all. We'll talk soon.
CommentLynn....I remember you from before. You recommended using Vanicream down there. Isn't that you? I ran out and bought some in 2001 and it helped. NOTHING is helping this time. I'm on neurontin, and I still can't quell that pain. I'm in pain 24/7. I was doing well until I decided to walk 5 miles a day. Low and behold, I got a tingly itch one day. It got worse. My dr. started treating me for yeast with pills. That made me almost suicidal. The yeast went away, but the horrible pain remains. I pray all the time in between driving my dr. nuts and crying. I'm trying to schedule in a different dr. I'm going to try the nerve entrapment route, or ANYTHING he suggests. I'm really suffering here, as are we all. Wish the vanicream worked this time!
CommentLynn...are you the one who recommended Vanicream 5 yrs. ago ,aren't you? I used it in 2001 and it really helped me. It's not helping now though. Even the neurontin isn't touching this this time around. I'm at my wits end. I was OK from 2001-2005. I would get irritated once in awhile, could not have penetrative sex, but was functioning w/o pain 24/7. Then I decided in the spring of '05 that I was gaining too much weight. I started power walking 5 miles a day. Low and behold, I got a tiny itch down there one day. It was downhill from there. All the old symptoms came rushing back. I pray every day for some relief. At first the neurontin took the edge off the pain, but last month it stopped working. I'm trying to get in to see a new dr. in Syracuse. One dr. I tried to see rejected me. She only sees vestibulitis patients, not full blown VV patients like me. So, Lynn, is it really you?
CommentLyn, my vilvodynia and IC is definitely Yeast. I am menopausal, but am only 56. Sex is painful especially in the entrance and my urethra is irritated. I heard that Estrogenm like Estrace can help atrophy. I am scared to use it because estrogen even in cream form can have yeast grow and may allow my vulvodynia to come back. As of now I have been well since i treated my yeast for 3 straight years. I am sure my yeast is definitely under control, but why is sex still painful. Is it perhaps my tissues were badly damaged. How can i repair this. HELP. Should I or should I not use Estrace or any other estrogen cream vaginally to help strengthen my tissues.
CommentHi all. I'm so grateful to all you gals. Really. I have been suffering with extreme symptoms of vulvodynia for 2 and a half years now. Severe burning , itching, pain, shooting pains redness and imflamation. I'm so utterly depressed... I'm 18. Is anyone my age out there suffering the same??? I've tried everything, literally, to no avail. Even emailed Oprah... we will see what good comes of that...
CommentHi Keira, I'm 20 and I've been suffering from vulvodynia since I was 10, started with burnign and stinging during urination now the whole vulvar vestibule is tender and sore. I've tried literally everything, am now trying effexor, acid redux, cystaq and am going to go to chiropractic, i can let you know how it truns out. Let me know if you want to talk over email or something, maybe i have some suggestions that might be helpful. I know how hard it is dealing with this at our age, i lost all of my teenage years to this horrible thing, adn I am not ready to lose the rest of my life. I'll keep you in my thoughts and prayers.
CommentHi Nora, Thanx so much for your response. I feel your pain, it's nice to know that there is someone out there that is the same age and dealing with this burden. Feel free to email me. I would love that.
CommentDate: May 7, 2006 Hello, everyone. I am new to this site and have just touched upon the first guestbook entries. I may end up being a "regular" here. LOL I feel very confident that what I've been suffering from for nearly 3 years is, in fact, vulvodynia. However, I don't know what the underlying cause is. I will give a briefing on what my experience has been with this and will hopefully be able to connect with many more ladies so as to gain some insight into this pesky ailment. I am definitely sure I first started noticing some annoying "soreness" in what I know is definitely the labia majora after the birth of my third child in July of 2003. That fall, I, upon closer inspection of the 'nether regions', discovered what felt like a small pimple when I pressed on my skin a certain way. I tried taking this issue up with the OB who performed my c section. It appeared that he was only trying to grasp at straws and threw the words "vulvar lymph node" on my record, which I found out after the fact. When I looked online at the subject of vulvar lymph nodes, all I kept seeing was the word cancer. This, of course, alarmed me, so I went to a different OB, one whom I had never gone to before, for a second opinion. She was thorough, much more thorough than any other OB had been. She didn't see any bumps or anything on the vulva or around it. I can't remember if I had mentioned the sore feeling that I had on occasion. Before I continue, I will list the issues that I've recently had at the end of my 'bio'. I went on my way with no real answers. No biopsies, etc. were taken. Nothing else was done. The problem was not at a severe stage, but it existed (and persisted!) Fast forward to NOW: I was too timid to bring up the subject to my new OB/GYN back in January during/after the pelvic exam and pap test. (I had a cat scan performed on 12/17/05 to confirm a ventral (or incisional) hernia that I incurred after my third c section. The cat scan also revealed a large dermoid cyst on my left ovary. I was on a mission to locate a new gyno doctor and wanted to find one who was willing to work with the general surgeon during my cyst removal in the event that the general surgeon needed to be in the operating room (the ob/gyn went at it solo but did, of course, have a medical assistant assisting him). He saved my ovary, too--a 2-hour surgery that took place on 3/22/06). I did end up bringing this concern to the new OB at my most recent post op visit following my cyst removal. I had to point out the area in question because he wasn't getting it. He did take a swab/culture but did not see any yeast or bacteria. He slapped the word dermatitis on it (I thought, after online research, that it was probably the most likely culprit) and prescribed Temovate, a very high-powered steroid cream that was to be applied sparingly 2x daily for no more than 2 weeks. I faithfully applied the cream but slacked off within the past week because I knew that it wasn't going to totally solve my problem. I would occasionally get the feeling that something was crawling in that area of the body. The words "pubic lice" came to mind, too, but I am pretty certain I don't have anything like that! LOL Anyway, I hadn't used the Temovate yesterday but it on this morning. At some point during the day, whether it be before I left church for home or after I was already driving home, I started noticing a constant pain in that area (the left side of the labia majora) and wondered if somehow my nerves in that area had been damaged. After being home for a couple of hours, the pain intensified and got WORSE! I ran into the bathroom for a look-see. Sure enough, something was drastically wrong! I could barely get the skin apart for a look because it hurt so badly. I saw what appeared to be a tear, or fissure, in the skin and thought I felt a lesion/lump but am not certain if I actually have a lump. However, a few peeks later I discovered that the area looked like someone had poured acid on me! It is very painful, especially when standing, and I got a hold of the pharmacist and a nursing supervisor at a local hospital (the nursing supervisor is a friend of mine), and both advised to get in the tub soon and try to at least let the plain water wash away whatever steroid is still left on the skin. I will DEFINITELY be getting in to see the doctor tomorrow; if he's not in, it will be one of his colleagues. I honestly think this stuff tried to burn my skin off! I don't know why the timing of it is now, though. I was at a standstill, wondering whether or not to follow up with the OB because I've only seen him since the end of July because of the dermoid cyst saga. He was thinking that he wouldn't be seeing my face again until January when my next yearly exam is due. Little does he know, hmmm? I've not finished reading all of the guestbook entries yet, but if anyone out there sees this after I post it and has a similar experience or some advice to share, please, I'd love to hear from you! You can post it or email me. I don't know what the doctor is going to do tomorrow when I get in there, but I hope I don't scream from being in anymore pain, I can grant you that much... Thanks for listening! P.S. I was going to have a follow up with him anyway to discuss what Plan B might be because he said that if the Temovate didn't work, that we'd try something else, but now THIS came up! Sheesh! Possible IBS (undiagnosed). Haven't had the symptoms (waking up during sleep with severe abdominal pain), having a few diarrhea attacks, and feeling like vomiting at the same time since my recent hernia surgery (with mesh) Ventral hernia repair with mesh - 1-10-06. Doing well post op but still have jabbing pains in abdomen where uterus would most likely be. Upon inspection, discovered a piece of stitching/knot that the general surgeon will remove at the hospital in July. (He likes to wait for the 6-month post op mark, so that's why it's not taking place till at least July 10, 2006) Dermoid cyst removal: 3-22-06. The doc did a great job; I had a concern about a hard ridge of skin underneath my incision; it's not a keloid but something common that occurs when they cut thru the fascia. Said my body will take around 3 months to settle down, esp. since I';ve underwent 2 surgeries close together in the same area. He revealed to me at my post op visit recently that he's still concerned that he didn't accidentally weaken the hernia mesh when he was performing the cyst removal. Heartburn and acid reflux; just underwent an upper GI series yesterday (5/6/06) which, thankfully, did not reveal a hiatal hernia but showed some reflux; my general surgeon may perform more diagnostic testing; will find out hopefully tomorrow. I often get sore throats and did incur strep throat while pregnant with my second child in 2000 but supposedly haven't had strep since. Do not know if the sore throats are related to the acid reflux. I told the general surgeon about my choking episodes while sleeping. Said this is not normal/dangerous, that I could aspirate on it and that it could cause pneumonia or be fatal, so that's why he ordered the upper GI series. The choking episodes come and go, but they happen while I am actually sleeping, and I wake up choking on what appears to be the acid. The last 2 bouts were around a month apart. This guy is thorough, so he may very well order an endoscopy. Recently diagnosed with [seasonal?] allergies by my family doctor. Was given samples of Zyrtec and Nasonex nasal spray. Didn't need to take the nasal spray. I'm not taking the Zyrtec right now because I'll be having a colonoscopy on May 16 to check for colon polyps. There's a family history of colon cancer, and my mom and her brothers have all had polyps found during their tests, and my mom and one of her brothers both have diverticulitis. I had a pilonidal cystectomy performed on 3/22/02 by a colon and rectal surgeon. It's a tailbone cyst. Took 5 months to totally heal. Thankfully, no recurrences. I have plantar fasciitis (along with a heel spur, unless they're one and the same) in my left foot. No surgery has been performed. My right foot hurts on occasion, but on the side, not the bottom. I suffer with bouts of anxiety. I had 2 attacks while in the hospital after my dermoid cyst removal. I cannot take Percocet, either. I had all the classic side effects of Percocet, so I think it's best to steer away from that drug... I felt more tired during this past winter, possibly due to the hernia and cyst, but I'm not 100% sure. I don't feel too tired (after my 2 surgeries) at night when it IS time to call it quits for the evening. Could it be from my anxiety over my multitude of health problems? Wouldn't doubt it...LOL 3 c sections to go along with all of the other things
CommentI'm just wondering if anyone has tried Threelac recently? Has it worked? How well? Did you have to do other things as well as Threelac, i.e. diet, supplements? Also, has anyone tested positive for candida but then tried to eliminate candida but had no change in their pain?
Commenti'm very interested in learning more about the biofeedback. i check your site regularly for any new updates. would like to see seminar's in the chicago area that the public can attend. thanks for all of your research and hard work. patty
CommentTo E Laswell: If you've been reading past guestbooks then you may have come across my name and my posts regarding my wife's vulvodynia symptoms. There are two things I wanted to comment on after reading your post. First would be the tiny lumps and other skin issues such as redness, burning and tearing on the labia, vulva and clitoris. I have seen all of these things on my wife including adhesions of the labia. These skin issues seem to come and go and are part of the mystery of vulvodynia. Maybe some of them are the result of yeast irritation, food allergy, hormones or any number of other causes. The other thing I wanted to mention was your abdominal surgery for hernia repair, I have had abdominal surgery since I was a little boy and I have been tortured with intestinal adhesions. Surgery to remove these adhesions only results in more internal scars. I passed this information along to you because the I.B.S. can be the result of adhesions, they sometimes kink the intestines and cause all sorts of problems. I have to be very careful not to eat things that can cause a blockage. I hope this is not the case with you and that there is a simple medical solution. Try not to get too frustrated with the doctors, many of them still know very little about this illness and they try whatever they can to relieve various symptoms. Avoid using too many medicines at one time and read the inserts. Some of them can cause thinning of the skin and actually make things worse. Best of luck.
CommentHello Sara, yes it is me. I am the lady who will stress how vanicream is good. BUT it helps only for some part of the pain, depending on the underlining cause. Vanicream helps me NOT durring a yeast infection, NOT when I am itching and burning from food allergies, it ONLY helps me when my vulva is irritated from soaps or like if my man performs oral sex on me and then my vulva gets irritated, then the vanicream will help moisturize it and heal it back to feeling normal again. So that is when it helps me. If I am burning from food allergies, have nerve shooting pains, on my period or something internal, then no it doesn't help. But external irritations, it does. Now if you are in serious internal pain, if you have food allergies like me, it could be do to your hormones, something you ate, drank or who knows...if you have leaky gut like me, food is the culprit and you need to get that looked into. Go to a natural pathic Dr that specializes in leaky gut, fibromyalgia, and food allergies. And just so you know Sara, if you have food allergies and get recurrent yeast infections, you may want to look into having the leaky gut. And listen, even if you can't find a Dr that specializes in these issues, you can order some tests from the Great Smokies Lab. They have all kinds of tests for our issues. You can order test from the internet and they'll send the results to your Dr. to go over with you. If your current Dr that you have does not believe in these tests or is skeptical about whatever, go to a Dr who knows a little about your issues. Anyhow, you can order test so they can measure the yeast in your system, a test that can measure your good flora (good bacteria), they can tests for leaky gut, bacteria overgrowth...all that. Just go to Great Smokies Lab website, check out there tests and go from there. I ordered a few test myself years ago and it has helped me finding out what my problems were. My Drs never knew! Anyhow, good luck. We'll talk soon.
CommentLynn....I just knew that was you. I am in the course of getting ANOTHER dr. Some dr.s have refused me. They will take vestibulitis patients, but not down and out vulvodynia patients with pain 24/7. I will mention all these tests about food allergies, leaky gut syndrome. etc. I can't quite get a handle on what makes the pain worse....diarrhea everything worse, I know that. That could possibily be the leaky gut syndrome. All I know is that I'm really discouraged! After 4 yrs. of being out of pain most of the time, I've gone back into my nightmare! Thanks Lynn for all your support. I'll be talking to you and everyone soon.
CommentTo J.E. J.E., "you wrote It's been over a month now that my pain level has been below a one on a scale of one-to-ten, and I think I am finally getting over this. Having read entries in the guestbook on several occasions, which made me increasingly despondent, I wanted to post this right away to share my situation, and some hope. My symptoms started in the typical fashion -- I'm 36 years old, a part-time lawyer and a mom. I used to work out for an hour a day, five days a week (mostly spinning -- which makes me wonder if there's a correlation)." I noticed we have a lot of the same symptoms and history. I would be interested in chating more with you. Please email me at laps1975@hotmail.com
CommentSpinning/biking place pressure on the pudendal nerve which is the nerve that innervates the vulva. If you feel better after stopping these activities, then it would probably be a good idea to find a different form of exercise.
CommentPudendal Nerve, Is you don't mind me asking, where is your nerve trapped and how do you think it happened? Good luck with the surgery.
CommentHi Sara, you said you were going to mention the tests to your Dr. but listen, MOST Dr.s don't order home kit tests because MOST insurance don't cover it. I had to pay out of pocket for all my tests. You don't need a Dr to order it, you just need to have the Dr. go over the results with you because the lab will give the results to your Dr. (whichever Dr.s name you give them) and the Dr will go over the results with you. You can look for great smokies lab on the internet today, look at there product tests kits and order what you want. Actually, when you order, you'll be ordering from a Dr. on line that sells the kits and that Dr. will send the tests kits to you. So even if you're home Dr. doesn't work with you, you can find one on line that does. That is what I did. I live in AZ, had a Dr in NY go over the results with me, he sent me some probiotics and that's when I felt a heck of a lot better. You can email me anytime at cpleasant1@cox.net if you have ANY questions. The probiotics has helped all this time (years) but the minute I took antibiotics for JUST 5 days, that messed it all up, gave me leaky gut and the vulvodynia came back. So now I am back on my diet and take probiotics again. I was doing good for about 3 years, I could eat WHATEVER, WHENEVER I want but now, I have to get back on the diet and take probiotics until my gut heals back to normal and healthy. That can take months to a couple years. Goodluck to us all in having better days.
CommentI have not posted for many months, but recently, I found out about a new product that made me think of all of the women on this Guestbook. I heard that it just came out in October, and it is getting a lot of support from the medical community (which seems unusual for a non-prescription supplement). It is called Natural Cellular Defense, and it is supposed to absorb toxins from the body, thereby speeding up the body's healing process. I have heard of and read several testimonials that make me think it may be beneficial for people with vulvodynia/VVS, or any ailment for that matter. I've heard that it has eliminated unrelated symptoms such as body tremors, very dry skin, memory loss in the elderly, etc. I know a couple of people who started taking it for general health and found an increase in their level of energy. One of them gave it to her dog and it appears to have eliminated parasites (worms) that she did not even know her dog had. That woman told me about a biochemist taking it who claims that it is the miracle we have all been waiting for. Apparently, there are conference calls every Sunday with guest speakers (often physicians) who talk about this "amazing product", but I have not listened in on one yet. I did read about one study that correlated NCD with cancer remissions in 78% of stage 4 cancer patients in a preliminary trial. Maybe it's a lot of hype, but since hearing about it a few weeks ago, I know several people who have begun taking it and I am excited to try it out, too. My VVS is gone (went away after I went off the pill), but I've heard that people have had lower cholesterol after taking it, so I wanted to try it for that, as well as for the all of the other ailments I've had to deal with! Here is where I ordered mine: http://my.waiora.com/products/item26000-NCD.php It is not cheap, but if you like it, you can sign up as a distributor and get it at a reduced rate. And if it really is the "miracle we have all been waiting for", then it is worth it!
CommentDo you think that you can post a some links to the testimonials regarding the Natural Cellular Defense as it applies to VV/VVS. I am most interrested in the ones regarding Vestibulitis. Or see if anyonme who has taken it with positive results can post here. I can't find anything by doing a search on our condition and using this product. Thanks!
CommentTo All: Could be another scam like Coral Calcium. Minerals Information Home || Commodity || Country || State || Products || Contacts || Commodity || Zeolites Statistics and Information Publications Contacts Subscribe Zeolites are hydrated aluminosilicates of the alkaline and alkaline-earth metals. About 40 natural zeolites have been identified during the past 200 years; the most common are analcime, chabazite, clinoptilolite, erionite, ferrierite, heulandite, laumontite, mordenite, and phillipsite. More than 150 zeolites have been synthesized; the most common are zeolites A, X, Y, and ZMS-5. Natural and synthetic zeolites are used commercially because of their unique adsorption, ion-exchange, molecular sieve, and catalytic properties. Major markets for natural zeolites are pet litter, animal feed, horticultural applications (soil conditioners and growth media), and wastewater treatment. Major use categories for synthetic zeolites are catalysts, detergents, molecular sieves. Publications If you are interested in receiving an email notice when a publication is added to this page, please refer to Minerals Information List Services. (To view or print a document in PDF format, download the free Adobe Acrobat Reader. ) Annual Publications Minerals Yearbook Zeolites PDF Format: | 1994 | 1995 | 1996 | 1997 | 1998 | 1999 | 2000 | 2001 | 2002 | 2003 | 2004 | XLS Format: | 2002 | 2003 | 2004 | Archive | 1932-1993 | Special Publications References on Zeolites (PDF) Contacts USGS Commodity Specialist Robert Virta Phone: 703-648-7726 Fax: 703-648-7757 Email: rvirta@usgs.gov USGS Resource Specialist Skip Navigation Links U.S. Department of the Interior U.S. Geological Survey Minerals Information 988 National Center Reston, VA 20192 USA URL: http://minerals.usgs.gov/minerals/pubs/commodity/zeolites/index.html Maintained by: rcallaghan@usgs.gov Last modification: 12-May-2005@11:05 Privacy Statement || Disclaimer || FOIA || Accessibility Contact: Robert Virta (rvirta@usgs.gov)
Commentwas diaganosed with Vulvadynia and it turned out to be LYME DISEASE!!! Beware you might be being misdiagnosed.. Lyme tests may come back NEGATIVE does not mean you dont have it.......Beware of Fibromyalgia also.
CommentAlly, since Natural Cellular Defense (a zeolite) was only recently released, I do not know if anyone with VVS has tried it. My guess is that so many people have experienced symptom eliminations/health benefits from it because their ailments are often caused or prolonged by toxins in the body and imbalanced ph levels. If the body is purified, then the environment in the body is conducive tor healing. But hey, I am no scientist or medical professional. I will just try it for myself and see if I notice anything. By the way, there are 100 different zeolites, and the zeolite in NCD is considered entirely safe and non-toxic. It is backed by an approved U.S. patent, supported by scientific research, and already on the GRAS (Generally Recognized As Safe) list for food ingredients. Zeolites were used to clean up radioactive toxic waste at the Chernobyl site (imagine what it could do for our bodies!). Now, it is in a consumable liquid form. The patent actually refers to NCD as a cancer drug, but many of the testimonials on the website do not reference cancer: http://my.waiora.com/testimonials/
CommentHope could you please post your results with the NCD? I don't want to try anything else right now unless someone says it worked for them.
CommentHello everyone! I've had VVS and generalized dysenthia (spelling?) for about 10 years that I've known for sure. I think I had it earlier and didn't know it was that. I've tried many meds., physical therapy, capsacian creme, etc. To be honest, I don't think any of it has helped me. I was on high doses of amitriptyline at one point and I think that did help at times. Like I would go a few months with no pain and then I'd get a flare and then a few months of good then flare, etc. Then I wanted to get pregnant so I had to go off of it. Actually, I think while I was pregnant I think I felt better in the vulva area (sometimes I think it's hormone related). Unfortunately, I developed IBS while I was pregnant. Initially, my IBS was on the diarrhea side so when I had my child and went back on the pill, I could take ami and things were okay. I also had bad hemorrhoids and then after my second child my IBS turned the other way and I was constipated. So no more ami. Since then I tried a number of drugs that are supposed to be not as constipating as ami. I really don't think anything has worked as well. I'm on Lyrica right now along w/Singular and I use Capsacian Creme. Like I said I don't feel like anything works and in the mean time, I am tired and putting myself through pain for what? I was lucky enough to get pregnant, but now I feel like I don't have the energy to keep up w/them. My husband has been supportive through all this, but I feel bad for him. Our marriage has suffered due to this. I guess I just wanted to vent and let others know that I know how they feel. I live in the Philadelphia area and I wish there were a support group for this. I've heard of none. If anyone knows of any in this area, please let me know. I really love this site because it makes me feel like I'm not the only one and I can understand. Thanks for listening!
CommentHello LIN, I read your post, I just want to say that BE CAREFUL while you are taking LYRICA. Some women have reported that there pain has developed or has worsen while taking LYRICA. I suggest you go back and read some of the previous posts. I can recall AT LEAST 15 times reading that LYRICA may be making you worse. Good luck!
CommentI just like to mention that after I been on LYRICA for one month my urethra pain got much worse.
CommentHi Gwen . I had my blood test done for LYME disease and it comeback negative. What do you meen to telling that even blood work test is negative it can be still Lyme disease. Is there any another tests for it? Did your blood test was negative? Thanks Marina.
CommentJust to mention that I had to stop drinking coffee, eating chocolate, consuming all drinks and food that contains caffein. It seems that they really disturb the proccess of healing with the homeopathy treatment. Greetings from Italy:)
CommentHi Lynn! Thanks for your information! I have read the posts and side effects do concern me. For the people whose pain developed, were they on Lyrica just for itching or dryness or something like that? My situation is hard to describe. I actually had two weeks (Yeah! Two whole weeks!) a few weeks ago and thought. . . .Wow! This is working and then it comes back. My "pain" is mostly dryness, itching, burning. Some days I wake up and I feel "okay." Then the next, it's like I'm back to square one. It's crazy. So I don't know if I'm getting worse or that it's just not working for me. Like I said, I feel like nothing has made a big difference for me. Is it wrong of me to want more than two weeks of feeling good? I want to be normal again!
CommentHi, It is really encouraging to see that we are not alone in dealing with this frustrating condition. Thank you all for your thoughtful postings. I've been on five rounds antibiotics since January for UTIs, etc. They've also found bacterial vaginosis twice and yeast infections on and off. They found one again today even though I have not been taking antibiotics since March. It is really really frustrating. I can't seem to get rid of the yeast. I've been treated by Diflucan and Clindamax many times, but the yeast inevitably comes back after several weeks it seems. I am pretty desperate. The yeast seems to have caused vulvar vestibulatis, which as you know is very frustrating and painful. If anyone can recommend something to eliminate yeast, I would be ever so grateful. This has really interfered with all aspects of my life...
CommentHi LIN, so you have a lot of dryness, itching and burning? That sounds like a yeast infection to me. Did you get tested? If so and if cultures come up negative for yeast, you can still have yeast in your blood (very specific and expensive testing is required to test for Systemic Yeast Infections). If you have a yeast infection, Miconozole helps me and also the prescription "Ketoconozole 200mg" makes it all better again. If you just have dry irritated skin from soaps or any other irritaions, I have used "VANICREAM" for that. That has helped me whenever I washed with an irritated soap or whenever my man performs oral sex on me and my vulva gets irritated, then the vanicream helps me. I swear the vanicream was my savior when I used to get paper cut tears on my vulva years ago when I was first diagnosed with this horrible disease. Good luck!
CommentHi Lynn, That is interesting to know. Thanks! No, I have never done any blood testing for yeast. I do see a specialist in Phila. who specializes in vulvodynia disorders. I believe she is one of the best in my area. Don't think there are many. So, you know, I would hope she would have suggested that. I believe she definitely feels mine is from nerve damage. She does special yeast testing whenever I see her which is about every six weeks. Not like testing that would be done in a regular gyno office. But she never rules out the oxilate diet. I've tried that and I don't think it really worked me either. I use all special soaps and special detergents. So I don't know what to think. You put your trust in these doctors who you hope are really trying to help. It's like we are stuck. There's no cure for this thing and these docs just keep on trying new things. I'm not sure that they are even sure. It's just now fair that we have to change what was a normal life. I know others are worse off, but it's just frustrating. Is Vanicreme something you can get over the counter and is it safe? I know some of these creams are actually damaging (thinning skin) to the skin down there.
CommentHas anyone tried Goldenseal to relieve their problems- I was just reading it has healing qualities for down there.
CommentVanicream is vanishing cream made for removing make up, it has no medicinal or magical properties. Goldenseal isn't a treatment or cure for vulvodynia either.
Commenti thought i'd offer a little update for those of you who were in the 25th guestbook. i feel like i'm actually getting somewhere, slowly.i've now got a doctor who is completely supportive which is making the ordeal much easier - knowing i can go back and see her when i want is a lifesaver. i've also been having homeopathy, unfortunately with limited success, but my dr mentioned pelvic inflammatory disease to me today which i'd never even considered. alongside my vaginal/clitoral pain, i am experiencing lower back pain, abdominal pain and irregular bowel movements...it looks like it could be a definite option. i should have an appointment coming up with a doctor at salford hope who was recommended in this guestbook so i hope to explore this possibility with him when i get my appointment through. has anyone else explored the link between vulvodynia and pid? x
CommentLaura, I don't know who you are. I don't even see your name in any of the recent or previous posts. But let me tell you something about Vanicream. It has NOTHING what so ever to do with makeup or removing any makeup off your face. Where did you get that from? Vanicream is a Dermatological formula Moisturizer for dry, irritated, sinsitive skin. Now there is a vanicream cream and a vanicream cleanser. The vanicream cleanser is soap that does not have harsh chemicals, irritants in it. You can wash your face and the rest of your body with that. You can wash make up off your face just like you can wash dirt off. But there's no vanicream used for makeup removal. To all of you who want to know about vanicream, you can even call the makers of the vanicream- "Pharmaceutical Specialties, Inc" at 800-325-8232. They will tell you what you need to know about the vanicream. Now I don't know anything about Goldenseal because I've never heard of that, so I can't speak up on it. But back to the Vanicream, years ago when I began using it and testifying to it, I would tell other women about it, they have tried it as well and has had Excellent results. So I know what I am talking about. I understand that what works for one, may not necessarily work for the other, but from what I hear, it works for dry irritated skin. Like I said several times in my previous posts, it helps me when my vulva gets irritated if I accidentally get harsh soap on it (from washing my anus with antibacterial soap or from when I'm washing my hair and accidentally get shampoo on it), or from getting irritated from having oral sex performed on me. It only helps when I have external vulva pain, not internal pain caused my yeast infections, food allergies, oxolate pain and so forth.
CommentGoldenseal CAN be used to help treat and/or relieve symptoms of vulvodynia. Not all cases but some. It must be part of a comprehensive holistic treatment plan however. Goldenseal alone may not do it. But it CAN help.
CommentGoldenseal CAN be used to help treat and/or relieve symptoms of vulvodynia. Not all cases but some. It must be part of a comprehensive holistic treatment plan however. Goldenseal alone may not do it. But it CAN help.
CommentTo Lynn: So glad you are doing well and posting. I remember you from years ago and all you were going through. My wife tried the vanicream and it didn't help her tearing skin but along the lines of what you said it might be of help to some women. I think we've used goldenseal to prevent colds and illness almost like echinesia(spelling). Hey, it's worth a try.
CommentHannah, it seems that you have many other problems that can cause your vulvodynia somehow. The fact is (according to homeopath specialists) that short healing proccess of homeopathy helps only to sicknesses like flu, high feever, herpes, soar throat ecc. When it's about problems, presenting themselfs as symptoms of deeper sicknesses of the body, you may need to cure the whole "field" (homeotype, I''m sorry I don't know how the american homeopaths call it in english). That's what I'm doing. Now I started expiriencing worsenings (spelling?), the first was the strongest and the longest one - about 3 weeks. But still much weaker that the symptoms during my first 6 months of having vulvar vestibulitis. Now each worsening gets weaker and shorter. It may take months untill I recover completely. It's all about for how long time I've been suffering, placing one layer on another one. Talking about the psychological reason. Now I started seriously thinking of working much more on my character. Some edges are too sharp, and I think that might be one of my big problems. I maybe was always potentialy exposed, and the vulvar vestibulitis has caught me when my body was weaker than ever before. Let's start thinking why certain sicknesses are comming always back to us? Isn't the body a very inteligent machine that is trying to warn us? It worths changing direction and start looking from a diferent angle. Support from Italy. Chiara
CommentLin, I hope you don't mind me asking if you see Dr. Kellogg in Philly. (it sounded like it from your posts). I also began seeing her and have so far had 2 visits. I was impressed by the amount of testing that she does, and I thought that she actually had some compassion (compared to other dr's). She also told me that some of my pain is from nerve damage, and she put my on 75mg Lyrica, which has done nothing so far. She told me however, that most of my problem is due to the muscles/connective tissue in my pelvic floor, and she prescribed PT for me. Additionally, she prescribed cromolyn sodium cream for any allergies. Just wondering if these were some of the treatments she prescribed for you,and how you are doing. I at least feel confident that I'm going to someone who is an expert, even though it is eating a hole in my wallet.
CommentI am glad to have come across all of this information. I do have fibromyalsia and did have a frequent cycle of urinary Tract infections followed by yeast infections (back when I used to have sex.) Right now, vulvodynia seems like the most likely culprit. We have been dealing with this for about 6 years and are fed up. Especially because my husband and I hope to have children soon. I have three questions for all of you. 1. do some have the pain at the vaginal opening but NOT pain after sitting or biking for long periods or the itching? 2. Does any one know doctors in South/central Texas who can help? and 3. how have you all delt with insurance? For those who have done medication, biofeedback, and vulvar vestibulectomy how did you pay for it? Thanks. If nothing else, it is good to know my husband and I are not alone.
CommentHi Nicole! Yes, I do see Dr. Kellog. And yes, it seems like she's an expert. Not sure where you are exactly located but there are not many in the Philly and surrounding area. I did see another doc. in Philly and though I think he is probably an expert, he did not have any compassion. I do agree that she has more than he does, that's for sure. I also think her office is hard to deal with and she is very busy, so sometimes I feel a bit rushed. Anyway, I have tried PT and I believe it worked for me, but then I got to a point where they released me and I was fine for awhile, but then it flared again. So I guess if you (meaning anyone) has the time to go forever, it's great. I would have to go a couple times a week and I do have 2 toddlers, so that's kind of hard. I have tried a cromolyn compound. It worked for awhile but then I got a flare and she actually stopped me from using it. Right now she has me on 200 mgs. of Lyrica, 10 mgs. of Amitriptyline, 10 mgs. of Singulair, and I am also using Capsacian creme. I feel like I am on too many drugs. As I mentioned previously, I just want to be normal again, and right now I don't ever see that happening. I have a few good days here and there but that's about it. I know some people are worse off so I guess I have to be grateful for the few days here and there.
CommentHi again Nicole, My email address is above. Not sure where you're located, but if you ever want to talk more, send me a note. I was looking for a support group in the Philly and surrounding area, but don't think there is one. It's a shame. This is a hard thing to deal with and it just doesn't get enough press. So, in turn, I don't think many people know about it. Even docs,. so it gets misdiagnosed alot. It seems like the medical field doesn't think this is that important like other disorders. I know it's not fatal, but it's very damaging in all respects, physically, mentally, and emotionally. I really think more money is needed for research so a cure can finally be found. Anyway, it would be nice to have someone to chat with about this. People who don't have this or know someone with it just can't understand.
CommentTo Cat: Cat, do you experience pain at the vaginal opening but NOT pain after sitting or biking for long periods or the itching? Is it all around the vagina entrance, or downside, upside, left or right? Is it really at the beginning or even little bit inside? It might be a vaginitis, vaginism or vulvar vestibulitis. If you'd like to talk to me about, feel free to mail me. I'm living in Italy and paying for my homeopathic treatment from my pocket. Anyway, contact me if you need it. Support from Italy
CommentI was wondering if anyone could tell me about using Calcium and Magnesium to clear oxalates. I have read the information on the vulvarpainfoundation website, and have had some preliminary success with it, but I am wondering about the dosage and frequency. There is no information about how much and when to take it. Could anyone help me with that information please? Thanks.
CommentHi FRANK, Yes I do remember you too and your wife as all. I have been through a lot but these days, I am just great. I know what causes my vulva pain and what to do to treat it, I stay on a diet and I take vitamins. I'm not going to lie, sometimes I cheat and have sweet food like every other day, then I'll take some capryl after wards to avoid the yeast infection and the pain that I'll get if I don't take it. Anyhow, but for the most part, I am just fine. To SHANNON, Hello. I just want you to know that I too have oxolate allergies, I try to stay away from high oxolate foods, but should I cheat and have some cranbury juice or something, the pain will come like the 4th time I have to urinate from drinking/eating high oxolate food. I will SWEAR
CommentHi FRANK, Yes I do remember you too and your wife as all. I have been through a lot but these days, I am just great. I know what causes my vulva pain and what to do to treat it, I stay on a diet and I take vitamins. I'm not going to lie, sometimes I cheat and have sweet food like every other day, then I'll take some capryl after wards to avoid the yeast infection and the pain that I'll get if I don't take it. Anyhow, but for the most part, I am just fine. To SHANNON, Hello. I just want you to know that I too have oxolate allergies, I try to stay away from high oxolate foods, but should I cheat and have some cranbury juice or something, the pain will come like the 4th time I have to urinate from drinking/eating high oxolate food. I will SWEAR to you that I take Calcium and Magnisium vitamins too RIGHT afterwards to avoid the pain of burning during urination. Listen, I have a LOT to tell about my food allergies and my treatments. I swear to you guys, it all helps me. who has food allergies? I can tell you somethings that may help you. If it burns during urination, if you get frequent yeast infections, if you have stabbing nerve pains in the clit, let me know. I may can tell you what works for me in hopes that it will work for you.
CommentSara :: I live in Syracuse too and am shopping around for a doctor who might be able to work with me. Just curious who you've seen and what your experiences with them were, as I've only been dealing with this for a year of so now. Feel free to email me.
Commentit's funny you should say that - after 2 months of not noticing any improvements (except in terms of the fact that i no longer have fairly continuous diahorrea anymore) my homeopath has now decided to explore the idea of miasmas(???) which apparently means that i could have a deeper undiagnosed condition that is being masked by the symptoms i've been experiencing. she's given me a low dilution of belladonna to try and take the inflammation down further and then she's going to try and address this deeper issue. and i've also been to see a podiatrist about a (theoretically unrelated) condition, and i'm now having some special things made for my shoes to improve my posture and gait so i can't help feeling that i must be making some progress towards getting better, even though there has been no change in the pain. whatever happens, i certainly feel more positive about everything at the moment. i'll keep you informed.
CommentIt's ok, happened also to me after my first trials to get better with homeopathy. I was taking Platina for vaginitis (3 months), thinking that it could be the problem. (Useless to say that I didn't notice any improvement) The diference was that I did it by myself, without any homeopath advicing and studdying my symptoms. Meanwhile my mother didn't stop telling me that it might be much deeper then the symptoms only. And that's how I decided to go to a specialist homeopath. The chronic pains (symptoms) are longer and deeper to cure. Important is to look for the reason from depth to surface, not opposite. You understood it, and that makes me very very happy:) Keep up!:)
CommentDOCTORS, PLEASE READ THIS. I CURED MY VULVADYNIA. I believe that several things cause vulvadynia and there are several different treatments. PLEASE STOP PRESCRIBING PSYCOTROPIC DRUGS.....ALL THESE DO IS PUT A PATIENT IN A FUZZY HAZE WHERE THEY DON'T CARE IF THEY HAVE VULVADYNIA. I cured myself. First...I believe that some vulvadynia is cause by anemia. Anemia often goes uncheck and undiagnosed. It is a strange coincidence that when I was severly anemic that is when I would have my flareups. Vulvadynia is also hormone related. Perhaps that is an avenue that needs to be studied more closely. My most severe pain was when I was ovulating. Also, highly chlorinated city water adds to the irritation. Home water treatment systems can help with this. I treated my vulvadynia myself because doctors were unable to help me. The one treatment done by a doctor that did help was freezing the skin. Funny that the one treatment that helped was the one that fell out of favor. THE MOST IMPORTANT TREATMENT THAT I FOUND WORKED WAS A&D OINTMENT EVERY DAY, AT LEAST TWICE A DAY. I WOULD SOAK IN THE TUB FIRST, THEN APPLY IT FAITHFULLY EVERY DAY. ON REALLY BAD DAYS I WOULD MIX IT WITH LIDAMANTLE CREAM (A PRESCRIPTION). OATMEAL BATHS ALSO HELP. ON GOOD DAYS YOU CAN WASH WITH DOVE SOAP FOR SENSITIVE SKIN. No other ointments helped even if they were somewhat similar to A&D. Make sure you don't wear deoderant anything....pads, powder. Make sure you use unscented detergent. Don't eat real acidy food. I often had flare ups if I ate a lot of strawberries. DOCTORS REMEMBER, IT IS SKIN IRRITATION. IT DOES NO GOOD TO TREAT WITH ORAL MEDICATION. TREAT THE AREA THAT IS BURNING ONLY. PLEASE HELP ALL THOSE WOMEN OUT THERE....IT IS DEBILITATING AND THEY ARE COUNTING ON YOU. I KNOW I HAVE BEEN THERE. THANK GOD I AM WELL NOW. CP
CommentCathy, I also think that highly chlorinated city water might cause a lot of vulvar irritations. I caught my first symptoms in Oman, where I had to keep working for 3 months. The water there is more then highly chlorinated, it's just badley stinking of chor. But that's the only water I could use on this place. Not knowing what may happen, I didn't start washing myself with mineral water (the only other solution there). The expirience helps:) Repeating again, not all women get the same symptoms exposing themself on the same conditions. Each body is diferent, we might have something similar in common, but generally we are diferent as reactions. But chlor in the water, high quantity of has really badley messed up my vulva.
Commentanyone hear of the vaginal ring for hormonal help to the vagina, bladder, urethral (urethral pain) helps urogenital atrophy please look it up
CommentI was wondering if anyone on here had the same symptoms I have. I have been to 5 doctors and all tell me I am fine. It is so frustrating! I have had vaginal irritation on and off for about 2 years (it started right after I got off birth control). I also feel like I have to pee more (but my doctors say no bladder infection). It usually bothers me for about a month or two then goes away for two months. During the irritation time the pain is constant but not any worse during intercourse. My doctors have done many tests and act like I am crazy. They have put me on many antibiotics, antidepressants and diets. None worked! I was wondering if this sounds like Vulvodynia. I mentioned it to my most recent doctor and she acted like she had never heard of it. Recently it is ruining my life. I had to quit my job and just sit around depressed. I am happy to say that I am 3 months pregnant but it also puts me in a terrible position because I am afraid (even though the doctors can't find anything wrong) this could be harmful for my baby. I just found this site and wish I could try all of the hints people give but am afraid to because of the pregnancy. Does anyone know of a specialist in Houston? I am so uncomfortable and stressed. I don't know what to do..all I know is that this pain is not in my head. Thanks Katie
CommentHI girls. To Cathy, I want to say that you are right, some Vulvodynia is in fact related to hormonal imbalance. And when Drs run tests for that, certain hormones have to be tested at a particular time in order to get accurate results. But the Dr. SHOULD BE an Incronologist in order to do this. Any other Dr. can just run hormone tests and not know the right hormones to test for. And as I understand it, there are lots and lots and lots and lots of hormones in our bodies. Finding the right one that is off balance and running tests the right time of day is of most importance in finding out if our Vulvodynia is in fact hormone related. I can't do an oatmeal bath or use Dove unsensitive soap personnally. Both have burned me and made me worse in the past. But I'm glad that you have found the A & D cream mixed with Lidamantle cream that healed you and made you all better. You mention that the Lidamantle was a prescription. I wanted to know if it was a steroid cream because if so, I want to say be careful with that. Steroid creams thins out your skin and eventually can make the situation come back and matters worse. To KATIE, You metioned that you have symptoms and you want to know if any of us have the same symtoms or not. You didn't really metion any symptoms other than vaginal irritation. Like I want to know does it burn, it, tingles...what?? I think with more info on your symtoms and what causes your symptoms, we can try to help you more. I know you mention that you have to urinate more, I feel like that when I have eaten too many oxolate foods without taking calcium/magnesium vitamins afterwards. I want you to know that women with Vulvodynia knows to stay away from ANTIBIOTICS. For some of us, they are the cause of our Vulvodynia and for some, they make our vulvodynia worse! It could cause Leaky Gut, or just kill of your natural flora in the intestinal tract as well as your vagina. Be careful and good luck to you.
CommentLynn, You mentioned that you take calcium/magnesium supplements for the oxalates. Could you tell me how much and how often you take them? I have just started them, but I can't find any information on how to take them. Thanks, Shannon
CommentDo you know of anyone who has taken Lyrica while pregnant? If so please let me know asap at jenedge@aol.com
CommentHi Shannon. You know, I honestly can't remember the dosage of the Calcium/Magnisium vitamins I take because I ran out of the vitamins and I haven't really taken them in a long time because I haven't had too. But I just remember taking 4 vitamins afterward I ate any high oxolate foods. I just don't remember how may mg it was. Whatever it said on the bottle to take daily is what I took that day. And so if it said take 4 pills a day, I took 4 pills right after I ate high oxolate food. So just look at the daily dosage. You should be fine. See for me, when I eat/drink sweets, I immediately take Capryl vitamin (2) 50 mg each and that will prevent yeast infections. If I eat high oxolate food, I take my calcium/magnesium vitamin right afterwards (although I haven't had any high oxolate sensitivities lately. For my leaky gut, I take probitics once a day during a meal, in addition to that, I take 1 Allicin vitamin twice a day durring a meal. This all helps me with my food allergies. Good luck Shannon.
CommentHi, I'm in my early 20s and from the uk. I'm due to go for a Fentons perineum plasty in a few weeks, this is due to a 6 o'clock tear. Has anyone had this procedure and can give me some words of comfort? I'm a little nervous! Thanks
CommentHi All, This is my first time visiting this site and I am amazed and saddened to know that there are so many unfortunate people like myself that have been struggling with this painful and at times unbearable problem for years. I experience extremely painful burning sensation during and after intercourse and would apply a cold wet face washer to the area to try and ease the burning but to no avail. I have since discovered that APPLYING A WARM WET FACE WASHER to the area works wonders for me. Although not convenient if your experiencing the pain while out and about it gives me some comfort to know that I can get some relief while at home. I hope this works for some of you. Best of luck. Jaz
CommentTo Gemma: I've been posting on this site since guestbook thirteen regarding my wife's vulvodynia symptoms including a recurring paper cut like tear at the six o'clock position. She has had three vaginal deliveries and every time an episotomy was performed. Eight years went by without a problem then the tear started to occur. Her gyn did perform surgery to repair a rectocel(bulging of the intestine into the vaginal wall) , reattach some muscle damaged by the episotomies and to form a new scar. The procedure did not prevent future tearing in the same place. I tried to look up the specific prodcedure you mentioned but was only able to find the basic reconstruction mentioned. I don't know the specifics of your injury but I do wish you the best in results. We never found out why the skin began to tear or thin out and she did try many medications and lubricants. I found out years later that injury to the six o'clock position often indicates forced sex trauma. That was never the case with my wife and I but that's all the doctors seem to know. Good luck.
CommentI have had problems for many years 10 to be exact. I was diagnosed with VV about 7 years ago. I found a new gyno that said pevic floor spasms not VV. He gave me a script for Vesacare which is for bladder spasms. He said the me, I actually know quite a bit about this (i'm thinking sure you do) well he did. After about a week of taking the meds once a night for a week, PAIN FREE. I hope this helps someone else.
CommentTo Terri, I just wanted to ask you a question. I too have had vuldvodynia for ten (it started when I was ten years old) years, it burns when i urinate and the vuvlar area burns, stings and has a raw feeling all the time. Is that anything like the symptoms you have had? I think I'm going to ask my doctor to prescribe me Vesicare, i've never given it a try. I just wanted to konw what you're symptoms were to see if they were anything like mine.
CommentHi Allison. I just wanted you to know that the only time it hurts, burn, sting and feel raw when I urinate is when I have high oxolate levels. Then I take calcium/magnesium and that will make things better. You can take them for about a week, whatever the daily dosage says. Try it for a week and go on a low oxolate diet and hopefully that helps you. Best of luck to you.
CommentFor Marina. I am in the UK but under the care of Dr Metzger in the US. She recommends getting Lyme Disease testing done through Igenix. She says in her literature "Do not accept substitute labs since they have a high level of false negative results". You can look at their website www.igenex.com, but it is difficult to navigate. The best thing to do is to phone them (800 832 3200) or email them igenex@igenex.com and ask them to send you the kit for tests #188 IgM and #189 IgG Lyme Western Blot. You'll see fromthe website that they offer these tests in combination with others as well, but you just need these single tests. They cost $95 per test, but you only pay on returning the blood sample; they send the kit out free of charge. When you receive the kit, you need to write in the name and address of your referring physician and get their signature (I can't get this as I'm not in US, so wrote this on form). So you need to talk to your doctor about it and of course you need to get your blood drawn at the surgery (or a lab). I don't know whether they send the results to your doctor or direct to you, as I haven't returned mine yet. The instructions that come with the kit are not clear. I had to email Igenix twice for clarification. The kit contains two test tubes. Ignore the one with the lavendar top. You need to get your blood drawn and put into the tube with the red/black marbled top, which contains some liquid (serum separator). You need to return the completed test as soon as possible after drawing, so it's best to arrange your FedEx pick up in advance for the day of the test and send it for next day delivery. Hope this is helpful. Helen .
CommentAfter reading up on Natural Cellular Defense and reading some postings on others sites, NOT vulvodynia sites, and seeing the results these people have had with this supplement orderedsome Not from the site that was posted here. I only was willing to get one bottle to try it out. I received the bottle on Saturday and took my first 10 drops in water and within 2-3 hours after taking it my bladder started to hurt as well as my urethra, right at the opening of my urethra. I felt like I would pee myself just from walking. I did some reading on it and you are supposed to drink alot of water otherwise you can become dehydrated. I am pretty sure the reason I had this pain was from lack of water. I barely drank anything. I came across this info about it at http://www.newstarget.com/015232.html scroll down to the heading Rik Deitsch responds to critics. I called a few of the distributors I could find on the internet since the company was already closed and one said to lower my dose and that it can be a normal response to detox, one didn't know anything about it and another said it wasnt normal. I plan to call the company who makes the product and talk to them. Anyhow, the main reason I am talking about this product is because I have seen an amazing result since this incident. I have not taken it orally again until I talk to the company, but I did use it topically and am completely amazed at what has happened. I was bitten by a tick 2 years ago, I got vestibulitis 4 years ago so no its not related. Since getting bitten I have had a bump at the site that gets extremely itchy. There has been a hard bump under the skin for a long time now. I read somewhere that you can use the NCD topically so I gave it a try. Figured I spent enough on the product, lets see what it can do, if anything. I have only used it on my tick bite 3 times, the 3rd being this morning. I used it once a day only. One drop Monday, Tuesday and this a.m. and rubbed it into the bite. The hard lump was half the size as of last night. And it hardly itches anymore. I have been around here a long time and have laways promoted natural products after the nightmare of 11 gyns who gave me no hope. But I n ever promote a product unless it has done something positive for me. I was a t apoint where I could not walk across a room without crying, now I wear jeans and can have intercourse again. Not all the time, but way more than NEVER. :o) And if I find I can;t use this product for what it did to my bladder, I will use it on this bite for sure. I am completely amazed and so is my Fiance'. He couldnt believe the bump is so much smaller that you can notice it already. Next time I get my usual premenstrual zit I am putting a little NCD on it. LOL I will post what the company had to say about the bladder problem. So while I can't promote this product for VV/VVS reasons yet, I highly recommend it for tick bites that won't go away.
CommentThe lady I spoke to at Waiora was useless. She acted like she didn't care to be doing her job, so I think I'll take the advise of the distributor I spoke to and lower the dose and see what happens. Instead of 10 drops 3 times a day he said to use 3 drops 2 times per day and work my way up. How can you have someone who works for a company who knows nothing about a product. Unreal.
CommentTo Lin and Nicole, I think you are both from Philadelphia and wanted to send a note. I too saw the dr's you are referring to. . thought I was getting better. . was sent for PT at Penn but finally visited Dr Glazer. Believe me the biofeedback works. You can be drug/cream free and get better. NY is not that far. Just wanted to share my experience.
CommentAllison, My symptoms were, burning when I urinated, pain down my but and the back of my legs, pain during, after sex, could not wear tight clothes without making it worse, pain in the thigh area. lower back pain. My doc said that the buring pain was from muscle pain. Like when you work out and your muscles are hurting the next day, same type of pain. Oh yeah I also had swelling in the barth gland area for years, I think that was the reason for the VV diagnosis. My doc said that long term spasms can cause swelling anywhere in the vaginal areal. Mine was always in the same spot. I am so much better.
CommentHi Helen. Thank you very much for information. I already called them and they are going send me kit . But I think I never saw tick on my body.Did you ever had tick bite? Marina
CommentRead the symptoms of Fibromyalgia at www.FibroFix.com.
CommentHi girls, I read somewhere back about people who tried chiropactic medicine and did a treatment called ART. I was wondering if anyone knew of any chiropracter in the northern ohio/souther michigan area who did this? thanks, good luck to everyone out there.
CommentHi Susan! Would you be able to elaborate more on the biofeedback you did in NY w/Dr. Glazer? I did do it before in Philly and it did work I guess. I was also on meds. I went for about a year give or take, then released. And I guess I was good for awhile after (always still on meds.), then it comes back. I mean do you still go? I think I went once a week. It's hard w/having two little ones to find the time to keep going. Do you live in Philly? Thanks!
CommentI have had tremendous success with interferon injections for my vestibulitis. I have spent my entire life in chronic pelvic pain. Interestingly, I was later diagnosed (age 36) with fibromyalgia. I think there is a definite link based on support groups I have been involved in. I had 18 alpha interferon shots around the vulvar vestibule. I was literally 75 - 80% relieved of pain. However, these were given 9 years ago and the pain has returned. I need to find a caring doctor in the Chicago area. Anyone with information to share, or who needs info. on this can contact me.
CommentLin, Yes I live in Philly. Did you do biofeedback with the PT only (in their office?) Did you have a take home device? That is what I love about Glazer's protocol. You do everything at home. No need to go in every week. I have been seeing him for 6 months (3 visits) and have had a lot of pain relief. It's still not completely gone but I plan to do the exercises as long as it takes. I don't mind them at all. Good luck.
CommentPlease can someone recommend a doctor for vulvar vestibulitis in the Chicago area - preferably north suburbs? I am desperate....thanks!!! jeanne
CommentHi Susan! Yes. I just did it in their office. I had exercises to do at home (still try to) but the actual biofeedback was just in the office. That's interesting. Something to think about. Is it hard to get an appt. w/him and do you know if it's covered under insurance? Also, are you involved in any support groups in Philly or surrounding area? I tried to see if there were any here and I was told there weren't any.
CommentLin - It is not hard to get an appointment. Parts were covered under my insurance and parts weren't, but I didn't care I want to recover. The exercises without the biofeedback machine at home are useless, believe me. The PTs really don't understand this well enough. Let me guess, "do 15 kegels a day and stretch the area internally." Not enough. As for support groups I never looked, I just want to fully recover and put this behind me and forget it ever happened. :)
CommentHi Everyone Is anyone else concerned about taking drugs to get over the pain? It seems that so many of you are taking drugs and I'm just worried that some of you are just trying to stop feeling the pain, instead of trying to prevent the pain from occurring. I do pelvic floor exercises religiously every day and I visit a gynaecological physiotherapist frequently for biofeedback. I don't drink orange juice anymore since I find it flares up my vestibulitis and ditto for bread. Milk on the other hand tends to lessen the pain. I cannot have sex at all but my partner of 5 years and I are getting closer to being able to through my controlled diet and physical therapy. I have also found that my psychological health is really important too in controlling the pain. Take good care of yourself, Kathy xoxox
CommentHello Kathy, I totally agree that drugs, in most cases, only hide the pain and don't actually cure the problem. For at least a year and a half I was convinced that I had neurological problems (I'd had a history of this and anxiety problems). So, I started taking drugs - it took about 80% of the pain away. Now that I know it's candida, I've done acupuncture (the best thing ever!!!), diet and herbal supplements and hope to eventually get off my meds. But in the meantime I've been able to work and have new relationships (i.e. sex when I want) simply because I've taken drugs. I didn't want my life to stop, and for me taking the drugs let me live my life until I could actually figure out the problem - and that took me 3 years. For me drugs have been a life saver in the short term and it's good to know that I might one day be off them all.
CommentHi Jenn: I get Acupuncture too. I was wondering which herbs you take. I'm glad you've gotten some pain relief. Sue
CommentHi Sue, since I'm pretty sure I have candida I've just been sticking with the usual anti-fungal type herbal stuff. Garlic (2 caps 3x/day), clove tea one week, then pau d'arco tea the next (I rotate so I don't become immune to them), the strongest probiotic from the natural store, oil of oregano (although I don't think I'm taking enough, it burns), chlorella (I love this stuff, it's great for detox) and some other liquid that my natural doctor gave me (don't really know what this is exactly). I think that's it. What about you? What are you taking? Anything that works well? I sort of started taking everything while on the diet, so I'm not very sure what's working. I stopped acupunture recently since it was getting a bit too expensive |
