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CommentWelcome to the 24th version of the guestbook series for the website located at www.vulvodynia.com hosted by Dr. Howard Glazer
CommentI have been suffering from vulvodynia for about a year...tried everything, nothing has helped. I just got married last month and my husband is very supportive, but I can't help but feel depressed that we weren't able to have a "real" honeymoon. Anyway, my doctor has suggested that I have surgery. It is called a vestibulectomy (spelling?), basically it is the removal of the vestibular skin. They then take skin from the vagina and pull it to cover the vestibule. Sounds terrible!!!! The MD says the success rate is about 80%, but I have my doubts. If anyone has had this procedure, or has any more information on it please let me know. Thanks!
CommentHi Amanda: I'd suggest getting a 2nd or even 3rd opinion before having surgery. Good luck with whatever you decide. Sue
CommentI have a question. Can hemorrhoids cause vulvar and vaginal burning? I have some pretty bad hemorrhoids and never had vaginal and vulvar burning until after I developed these hemorrhoids. I mean, the ares are *right* next to each other.
CommentI have been taking Elavil for 4 months to control my vulvodynia...it has really helped. Unfortunately I have gained some weight while on it. My dr said that I can start weaning off of it in a few months. My question is, has anyone lost all of the weight they gained when they stopped taking Elavil?
CommentThanks Sue...I am in the Cincinnati area...I can only find one MD that specializes in vulvar pain disorders here. Does anyone know of any specialists in the Cincinnati, Dayton, Columbus, or Indianapolis areas? Thanks.
CommentSusan I have lot 12 of the 20 lbs I gained while on Elavil. It's a little bit slower going but I am making progress. I'm also 24 so my metabolism is kinda good anyhow but remember to try and exercise.. it will not only help you drop weight but feel better "down there" too.
CommentSusan- Also how many mgs of Elavil are you on. I am still trying to find the dose that makes me pain free. I'm definitely somewhat better than I was but I'm already up to 80 mgs. Has anyone here ever tried Elavil with no luck and tried another antidepressant that did? Please please someone comment. I'm getting a bit frustrated.
CommentKatie-I tried Elavil but had to stop because of the dry mouth. I never got far enough into it to see if it helped with the VV. I have taken Norpramin for about 4 years now. The generic is Desiprimine. I usually take 50mgs. Early on when things would be worse, I could up the dose to 75mgs, but I'd only have to do that about 4 days of the month. I haven't had to do that in a long time. Norpramin is a tricyclic antidepressant that is one of the older drugs on the market. For me, I found almost no side effects. I actually take it in the morning and don't get drowsy. It is a drug that is given to diabetics for neuropathy. If it works for their nerve damage, I was willing to give it a try. It took atleast 6 weeks to feel a difference. I have not gained weight on it, but now that I feel better, I am able to be more active. I gained weight before the antidepressants because was so uncomfortable that I didn't want to be moving around. Their are a lot of tricyclics out their to try. My Dr. said we'd eventually find one that fits. After about 4 drugs, we did. Good Luck!
CommentCould the woman who's having success with Effexor please post about how many mgs. you take for relief? Thanks. Also, to anyone who is on a low oxalate diet, can you give me some ideas of what to eat for breakfast? I'm not an egg lover and all the cereals I have at home are high in oxalates. Are there some that aren't? Thanks. Sue
CommentThank you Jennifer!
CommentSue, I have been on Effexor for about 2 1/2 weeks now. I am on 37.5 mg. However, I asked for a small dose because I am only 4'11 and 85 lbs. Nonetheless, it has given me significant relief after such a short period of time. The constant burning sensation in my vagina, vulva and rectum is almost gone. It only comes on a for a short period of time (about a half and hour or less 2 or 3 times a day which is a BIG different than the constant intense burning). Although it is still uncomfortible to be touched and I cannot have penetrative sex yet I continue to see an improvement everyday. I have very high hopes about this med and it has reducded my pain so much that my depression is gone. Good luck to you!!!
CommentJ, I'm so glad the Effexor is working for you. That gives me hope!! Sue
CommentOK, I am very sad. I've had this problem for about 12 years and I'm 36. Over the years I've been told by various doctors that 1)the pain was due to yeast burrowing under my skin and could be cured with diflucan. that worked for a few months, then the pain came back 2) the pain could be cured with low-dose anti depressants. that actually worked the first time and then i went off them because they lowered my libido, then they didn't work as well after that 3) various infections. Also, I figured out myself that I'm allergic to propylene glycol and that was a biggie. So I felt fine for several months and my boyfriend and I decided to try and have a baby. So we've been trying for about 6 months and now i have the pain again. And I live in Mexico where no one knows anything about vulvodynia and the labs where they do cultures are just not that reliable. it takes ONE MONTH for them to do a culture to see if you have a yeast infection. another kind of culture checks for a bacterial infection but i have gotten at least 10 of them in the past 4 years that i've lived here and NEVER had a positive result. So I don't want to take metronidazole as I don't really know what it is and I don't want it to make things worse. And I don't want to use boric acid which has helped in the past because I don't want it to make things worse. And I am trying to be positive but I feel very sad. I would really appreciate any advice...or just nice words....
CommentI have been suffering from inexplicable chronic vaginal and rectal itching since 2002. I just had another frustrating visit with my doctor yesterday and she has no idea what the problem is and suggested I have "Chronic Rectal Itching" which is incurable and she said "some people just have it." That explanation didn't seem to fit or satisfy me, and I left her office practically in tears. I wondered if this problem was all in my head...until I came home, googled "Chronic Itching" and came across sites on vulvodynia. I almost cried, realizing that this is probably what I've been suffering from and that there is a NAME for it, and I'm not just imagining this. I've started using tap water after urinating and Crisco after reading some of the posts here...hoping it helps. I am desperate. I live in Minnesota, does anyone know of a doctor here that treats or even KNOWS about this condition? I am appalled that my OB and family practitioner are not aware of it. Why the lack of awareness on their part?! Thanks for listening...
CommentHi everybody, I am writing again because I found that my entries from last week were deleted from the guestbook - I don't know why. I just wanted to share my story because maybe it can help somebody. I'll try to keep it short this time, in case it is deleted again. Anyhow... I am 32 years old and have had vulvodynia and vulvar vestibulitis for the past ten years, I have no idea what triggered it. It has been awful to say the least and I was nearing the end of my rope. After trying many of the usual things and having none of them work, I finally decided to have surgery. So, I had a vestibulectomy on March 9 and everything went great - the surgery was painless and the recovery was short and surprisingly easy with much less discomfort than I expected. I look just about the same down there too - only a very small area with the glands (not the Bartholin's) was removed. Best of all - the unrelenting shooting, burning, stabbing pains from my VV went away immediately and haven't come back. I still have the pricking irritation at the front of my vulva if I go on long car rides - from the vulvodynia - but I didn't expect surgery to get rid of that and I can deal with it since it goes away. My doctor in the U.S. was Dr. Jessica Thomason in Milwaukee until I left in 1998 and moved to Turkey - here my surgery was done by Dr. Gorkan Zorlu (another excellent, sympathtic doctor) who is a professor at the Akdeniz University in Antalya and has a private practice. Now I can have sex with my husband, although I am still a little sore at the small healing site, but that is to be expected for a little while. I know that surgery isn't for everyone, but I just thought I'd let you know that it seems to have worked for my VV. I'm so happy now, I never thought I would feel this way again - hopeful for the future- and I am just sorry that I waited for so long - Dr. Thomason said that I would be a good candidate for surgery, but I put it off because I was scared. I'll write here again if my VV pain does ever come back. I wish you all luck and may they find a cure for this wretched disease someday soon.
CommentAeb - I'm so sorry you have such poor medical resoruces in Mexico. Have you thought about traveling to the states to get an opinion? You can look on the nva.org wevsite to find a vulvovaginal specialist that's as close to you as possible. Hang in there.. There are treatments... you just need to find a good doctor.
CommentAeb- also, is St. John's Wort available in your area? It's supposed to be natural antidepressent that you can get at most drugstores in the state or maybe you can go online. Alot of us take antidepressents to help chronic pain. It could be worth a shot although I'm not sure I've read anyone being specifically cured by that. You may want to search through older posts. Also, there is the low oxalate diet. Now I have seen some people swear by that and it can be easily researched online. Good luck!
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CommentI started with vulvodynia in 1992, had it until 1998. I was basically self diagnosed. A pain management Dr and an allergist helped me. I had what I would guess is dysesthetic vulvodynia, not vestibular. I used Capsaicin (spelling?) which I still use occasionally if I start feeling itching or irritation. I really believe yeast has something to do with all of this. Will they ever find out what causes this strange disorder? I also still have a vaginal , whitish discharge which has never gone away since 1992. Have had numerous vaginal cultures which were negative. Does anyone else have a discharge. I also believe this disorder is related to chronic fatigue, which I believe I have now. I work part time, am 44 years old with a 4 year old. Which may contribute to my fatigue. If anyone would hasn't tried the capsacain (Zostrix), try it. Use very little and start out just where the pubic hair is. As you get use to it, apply it closer to the vaginal area. It will cause a burning sensation that will go away after 10 minutes or so. But, the more you use it, the less burning you will have. I don't know how it would work for vestibulitis, but it really does help dysesthic vulvodynia. I also tried Elavil, didn't help, gained 20 lbs. Neurontin helped, as did allergy shots for yeast allergy. I did the Neurontin, allergy shots and capsacain all at once. I believe it was the capsacain which helped most.
CommentAeb- I'm like so driven to help you :-). Found this in the FAQ section of this site. Maybe you could have a phone consult. You mentioned you had yeast issues. Marjorie Crandall, Ph.D. [proponent of the yeast-infection theory of vvs] Yeast Consulting Services P.O. Box 11157 Torrance, CA 90510 http://home1.gte.net/ycs (310) 375-1073 (310) 791-1363 (fax) [She has an information packet available for $20, and will do phone consultations for a $30/30 minutes plus $1/minute thereafter.]
CommentHey there - it's great to see someone else having success with 37.5mg of Effexor. As long as I was taking them on time, the constant pain was going way. Combining the pills with physio worked so well for me... hope you can add pelvic floor physio soon - then I was able to lose the pills. Pain free for five months now (thank heavens).
CommentHi aeb, I live in Turkey and it sounds as if Turkey is a lot like Mexico where the gynocologists generally are ignorant of vulvodynia / vulvar vestibulitis. It took me a frustratingly long while to find a good doctor - I was referred to my present doctor by a mid-wife and he is a professor at a university as well. You might want to try calling/faxing around to different universities with medical schools to see if they have any gynocologists who know about our condition or if they know of any knowledgeable doctors in your area. Maybe if there is one not too far away from you, you could see him or her. Good luck.
CommentJus curious...How long were you on the Effexor? and how long did you go to physical therapy? Also, did you have vulvodynia or vulvar vestibulitis? J
Commentthanks so much, Katie and PS. Katie, I've been to doctors in the US before (I've only been in Mexico 4 years) but they all were temporary cures. I am thinking of going back to visit a dr, but it's SO expensive without health insurance and of course I need to go to the right one...so hard to find a good one. I've also used the antidepressants before, sometimes with success, sometimes not. I don't think St Johns Wort works the same way. And I don't want to go on antidepressants as I want to try to get pregnant. Has anyone else gone to Margery Crandall or used her phone consultant services? How much can she really tell you by phone? If the problem turns out to not be yeast, is there any point to consulting her? PS, I think your suggestion was a good one, I may try it, but it's hard because my Spanish isn't perfect. I did find one name of someone in Mexico City (7 hours away) who might know something about it... thank you so much for all your advice and anything else you want to say or suggest is always welcome...
Commentthanks so much, Katie and PS. Katie, I've been to doctors in the US before (I've only been in Mexico 4 years) but they all were temporary cures. I am thinking of going back to visit a dr, but it's SO expensive without health insurance and of course I need to go to the right one...so hard to find a good one. I've also used the antidepressants before, sometimes with success, sometimes not. I don't think St Johns Wort works the same way. And I don't want to go on antidepressants as I want to try to get pregnant. Has anyone else gone to Margery Crandall or used her phone consultant services? How much can she really tell you by phone? If the problem turns out to not be yeast, is there any point to consulting her? PS, I think your suggestion was a good one, I may try it, but it's hard because my Spanish isn't perfect. I did find one name of someone in Mexico City (7 hours away) who might know something about it... thank you so much for all your advice and anything else you want to say or suggest is always welcome...
CommentIt has been about a month since I have posted. Things have been going very well for me since discontinuing hormonal contraceptives a couple of months ago For the past month, I've been off the Nortriptyline, the ThreeLac, the enzymes -- well, pretty much everything except for Calcium Citrate. As everything seems to be back to normal physically, my boyfriend and I have been dealing with the psychological effects of sex being associated with pain over the past year. On a positive note, we have re-introduced intimacy into our lives on a regular basis. We've had to start out very slowly (my boyfriend is so patient!), and in doing so, my muscles have been relaxing and involuntariy contracting less and less. One thing that has been very helpful is a lubricant I have come across called O'My. You might want to check it out if you're looking for one. You can find it at www.drugstore.com. I'll try pasting the direct link, just in case it will let you click on it here: http://www.drugstore.com/products/prod.asp?pid=72118&catid=682&trx=PLST-0-SRCH&trxp1=682&trxp2=72118&trxp3=1&trxp4=0&btrx=BUY-PLST-0-SRCH
CommentArgh I've become totally frustrated with Elavil...I brought myself up tp 80mgs with still no huge difference... so now I'm weaning off of it. I see Dr. Goldstein on the 6th and I plan on discussing a new antidepressent, maybe the one Jennifer is on. It's so hard to "hang in there" when you get mixed opions on how long it takes for the "correct dose" to work. Some resources say 1 to 3 weeks, some say 6 weeks, some say 3 months. Anyhow, I think I want to try one with less side effects if I'm going to wind up needing a higher dose. I'm sick of falling asleep at 7:30 and stuggling with my weight. After I dropped the elavil down to 40 mgs I lost 3 lbs in like two days. I need a new plan.... sorry... feeling discouraged. Any more comments on antidepressents, your dosage and how long it took you to feel better, please please share. Also, one comment on narcotic pain killers, they seem to be the only thing that does the trick for me even though I know I can't take them forever but ladies, please do not be afraid to ask your Dr. for them as they can really help during tough times (i.e. after sex, when you need to be sitting all day long in the car, or when extreme stress has caused a flare). Thanks to all in advance, your insight keeps me going.
CommentIs there ever any relief from this condition? I have been diagnosed with vulvar vestibulitis and feel that I will never be pain free again. I am considering separation after being married for 28 years to avoid the pain.
CommentDeborah - don't do anything rash? How many treatments have you tried? Does anything help with the pain? Maybe your husband needs to be more understanding if you are considering separation. Sex should never hurt and you shouldn't keep doing it until to find a way to be comfortable.
CommentDeborah - don't do anything rash. How many treatments have you tried? Does anything help with the pain? Maybe your husband needs to be more understanding if you are considering separation. Sex should never hurt and you shouldn't keep doing it until you find a way to be comfortable.
CommentCould anybody please sugest a good product to be used on daily bases to prevent yeast infections. I have heard of ThreeLac, but it is so expensive!!!Please write if you have tried it, or any other natural ramady and were satisfied with it. Thanks
CommentHi J, I was diagnosed with Vulvar Vestibulitis because my skin looked much worse in that area. I was in constant stinging pain and the pain would move both well above and below that area (which seems very vulvodynia like to me). I was first sick last June, lucky to be diagnosed that August. I started physio in early September and finished at the end of November (3 months?). I got significantly better after each round of physio and I always did all the "homework exercises" they gave me. I started the Effexor early September too on my doc and physio's insistence. First three days of meds = hell, but then it was nice for cutting pain. I think I stopped the effexor at end of October when most pain was gone. I've been just fine since November. I know it's different for everyone but good luck and hang in there with your doc's treatments.
CommentDoes enybody know which probiotic is good? Does it matter if you buy it refrigirated or not? I heard PB8 is not bad. Has anyone taken it? Thanks.
CommentThree Lac is really great. You can also take Grapeseed extract. (a wonderful antioxident). Also, garlic is a natural antifungal, so you could take garlic supplements. And taking a good probiotic is important. Personally, I like Megadohilius which can usually be found at Health food stores. Also, many health stores have things like Yeast Defense, which is a pill form and a combination of garlic, Caprylic Acid, Grapefruitseed extract, as well as Lactobacillus blend. Good luck!!
CommentLAURA- CAN YOU PLEASE POST THE PHONE NUMBER AND ADDRESS FOR Dr. John Marcus, in Ridgewood NJ. THANK YOU SOOOOO MUCH!!!!- im 20 and looking for a doctor who specializes in this because i've been suffering the last year and a half- none of the doctors ive been to know what they are talking about or seem interested in getting to the bottom of this- i feel too young to be dealing with this right now- thank you very much~
CommentHi, I have been having vulvar pain for about a month and a half now. Pain ranges from overall raw feeling, though not burning exactly, to a stabbing or throbbing pain mostly in in the clitoral area. I am 7 months pregnant and developed this when I was 5 months pregnant. My OBGYN INSISTS it's just weird bodily changes because of my pregnancy, but I am convinced it's vulvodynia. Wanted to hear anyone's thoughts on this. Because I am pregnant, it's not as if I can be on any meds or anything anyway, but the uncertainty is making me very upset and anxious. Is it possible that pregnancy could cause vulvar pain and that it's not vulvodynia, or is my OBGY just blowing me off??? I would appreciate any response!
CommentTo ab - I know your symptoms are distressing especially if you've been reading about any of us. But a woman's body goes through all sorts of wacky things during pregnancy. Vulvodynia is a diagnosis of exclusion meaning that many other things need to be ruled out first before it is given. If the problem persists after you give birth and your hormones return to normal, then I would begin to be a little more concerned. For now I think you should listen to your Dr.
CommentHi girls I was researching on the net, and different web sites give different directions as far as Boric Acid suppositories go. Some say use 2 a night for 3-5 days, some say one in the morning and one at night for 7-10, and some same for up to 14 days. Which one is it? thanks
CommentHi everybody, I am the one who posted about her surgery on April 29 - I wrote too soon. Some of my pain has returned, I'd say there has been a 20% reduction though. I had both vulvar vestibulitis and what I guess is called dysesthetic vulvodynia and I knew that the surgery wasn't likely to cure the dysesthetic vulvodynia and I guess it hasn't. But at least some of of the shooting pains from prior to the surgery seem to be gone. I'm still bummed though. If there is anyone out there who has tried Chinese medicine and found it helpful, I'd be very interested to hear about it. Though where I am going to find that living here in Turkey I have no idea. I think I may start acupuncture soon - they have recently opened a place about an hour and a half away from where I live. Also, has anyone had success with The Glazer Pelvic Floor Muscle home training program? I've been reluctant to try that since I would have to do it on my own and I've heard that if you do it incorrectly you can make things worse down there. They don't have anything like this in Turkey, so I would have to order it and do it myself. Frank B., if you read this post, I just want to let you know that I think you are a really super guy and that your wife is a lucky woman to have a man who spends so much time trying to figure out her problem. My husband loves me and tries to be suportive, but he is having a hard, frustrating time.
CommentHi again aeb, I forgot to tell you before - when I was looking for a doctor here in Turkey, I sent some faxes around to gynocology depts. at medical schools in English and got some responses back in English. I assume that some research doctors must learn some English in order to read foreign research publications as well as to contibute to them. So maybe you would have some luck. Also, if you go to www.babelfish.altavista.com it will translate from English to Spanish and Spanish to English, so that might help you a bit. I sure wish it would translate Turkish! :) I wish you the best of luck! I know how frustrating it feels to be in a place with below-par medicine and to have lack of language skills.
CommentHi there, just been checking out the site and love the guestbook although its going to take me a while to read all of it! I have had vulvodynia symptoms for 2.5 years although it has never been specifically diagnosed despite 7 different doctors! I have a new doctor who has put me on a course of gynatren which is a vaccine containing several different lactobacillius strains, has anyone here tried this and if so what were the results?
CommentQuestion for those who see Dr. Goldstein. I heard he charges around $400 for the first consultation and he doesn't accept insurance. I was wondering how much your office visits usually end up costing? I've been dealing w/this for so long I think the money is probably worth it but I wanted an idea of what I may end up spending. Thanks!
CommentHi everyone - I haven't written in about a month because I've been using the premarin cream (internally) and wanted to wait until I visit my dr. next week. Overall, it's been a fine experience. I had no problems with burning, itching, etc. My skin down there looks pinker and stronger, less red. I still don't know if sex will be painful, but I'll find out more next week...he usually probes me around the 4 and 8 o'clock spots to test for tenderness...hopefully I'm better down there. I still continue taking 3 Lac everyday, multi vitamin, calcium citrate, B-complex, etc. I'm on elavil at 25 mg. but will speak to the dr. about going off...I just don't think it's helping at this point so why put that into my body. TO MARGARET...I read your post about your relapse - I hope you've gotten things back under control. I just think our bodies are sensitive machines and lots of things can go wrong with 1 minor imbalance. I'm praying for eveyone! Now, for the woman who requested Dr. John Marcus' information. 201-447-0077 89 N. Maple Ave., Rigdewood, NJ. Good luck with your visit...he's a great dr. Keep us posted.
CommentDoes anyone have a list of common household/environmental chemicals that can cause vulvar pain by any method (inhalation, absorption through skin, skin contact, medications, digestion, etc.)? I've noticed I actually feel better when I'm out of my apartment.
CommentDr. Goldstein prices in Manhattan office - My first vist was $1100.00 because I have like 8 blood tests and cultures done. Usually I think the first visit is from $800-$1000. Follow up visits range from $80-$250 I think but he does alot of free phone follow up. I'm going in for a follow up but it's because he told me I needed one, I think he would have continued to keep in touch with me over the phone. Also, you can always try and submit the claim to insurance -- but it could just be a one time big expense.
CommentSorry typo, I'm going for a follow up NOT because he told me I needed one, but because I wanted one. Like, I said I think he would have kept assisting me over the phone for free.
CommentI haven't actually been diagnosed with vulvodynia, yet. However, my doc and I have discussed it as a possibility. About three months ago, I started having vulvar itching/burning from what I thought was a yeast infection. I had never had a yeast infection before, so I visited my doc to be sure. The culture came back negative, but we decided to treat it as one, anyway. Monistat did nothing, Diflucan helped but didn't totally fix the problem, Flagyl just made me sick to my stomach. So, now my doc has suggested that it may be due to a hormone imbalance from being on birth control pills. I am currently using a progesterone cream that I apply to my wrists (thin skin area) and my stomach and thighs (fatty areas) twice a day. And I have gone off of the pill. I do feel better (not great) most days. Has anyone else used this cream, and if so...did it work for you?? Or, has anyone noticed improvement after stopping the pill??
Commentto C - No problem! Wow over a year with the pain? I'm glad you're finally getting to a specialist. I see Dr. Goldstein myself this Friday. I'm glad someone out there has been reading my story and if it helps you at all-I'm doubly glad. If you have any questions, please feel free to email me directly or just keep postin'!
CommentRegarding Boric Acid Suppositories, my wife has used them on two or three different occassions for two to three weeks at a time and only in the evening when she was going to be laying down for the night. They can be kind of messy as they dissolve and react with your body, might want to wear a panty liner.
CommentIve had vulvodynia for 10 years but was not diagnosed for about 5 years. I have had many different operations and have tried endep, neurontin, and biofeedback with very little success. I live in Australia and they are currently doing a trial on using botox for women with vulvodynia the results are available in July. I know a lady that took part in the trial and she is totally cured and she knows three other women with the same results. I am hoping to give it a go if it is approved. I am just wondering if this has been tried anywhere else.
CommentDoes anyone know of a gynecologist in the Colorado Springs area who is familiar with this condition?
Commentjaz--i'd be very interested in hearing how your botox injections work, please make sure to update here!
CommentFOr those who recently posted about the condition of your skin in the vaginal area and herpes, do you think there is a relation there? I have never really had a herpes outbreak, yet have been tested positive for past and current infections. I never knew.....you would think you would know if you had an out break. I can't get the skin down there to stop tearing and bleeding. Just putting estrogen on it makes it bleed. Real bummer. Has anyone done a treatment for the herpes that has helped the skin? I am at a loss. Been dealing with this for 19 years after a complete hysterectomy and several vestibulectomies (which I would never recommend doing) H E L P!!!!!!!!!! I am desperate.
CommentRe: HERPES/SKIN TEARING Herpes can present in a number of atypical ways including fissures (cracks in the skin) things that can be mistaken for pimples, ingrown hairs etc. Do a little more web surfing for herpes or call the national AIDS and STD hotline (the number escapes me right now) and they'll tell you all about the different ways herpes can look and act. If your skin is tearing in the same place at around the same time every month or so it could be the way you experience an outbreak. Do you take suppressive therapy? Valtrex has like no side effects, they even give it to pregnant women. If you are worried you could try suppressive therapy and see if it helps.
CommentKatie - I called Dr. Goldstein and my first appt will be May 24. I was warned the appt cost would start around $800 - $1500! I'm not sure where my doctor got the $400 amount from. Luckily, my current doctor has done all kinds of lab work on me so maybe that will help in keeping down the costs. Have you tried to submit your bills to your insurance company? I'm curious if that is an option. Also, relating to herpes, I was put on Valtrex for a year after my first outbreak (which was quite obvious to me, I had sores, swelling and lots of pain). After that initial outbreak, I have never been the same down there. I did continue to get fissures while on valtrex and was actually hoping that maybe they would go away when I got off the medication. No such luck. I definitely think there is a direct correlation to my pain and herpes. Katie, good luck w/your appt. today. I hope things go well.
CommentTo C - I submitted my charges from Dr. Goldstein to my insurance & they paid about 60% of the "UCR" (usual, customary rate). Also, have you tried Neurontin yet? Dr. Goldstein uses this drug also (besides Elavil & Effexor) and it is supposed to be especially effective if your pain is post-herpetic. Good luck to you! YOU WILL GET BETTER! As for me, I remain pain-free after weaning myself off the Elavil. (The only problem I had was not being able to sleep well for about 4 nights after discontinuing the med - am now fine!).
CommentHi again everyone, I have found something interesting that some of you might like to take a look at. I've been doing research into other causes of my pain and I found something called Pudendal Neuropathy at this good site http://www.tipna.org . They also have a big forum. A bunch of vulvodynia women are over there too and they have symptoms like I have - shooting pains into my buttocks and legs, which seems to also be symtoms of Pudendal Neuropathy. I read off the checklist of symptoms - I was reading about me exactly!! And it seems that Elavil is one of the medications that people with this use, and I have seen many people on this site using that. I'm feeling pretty mad today because when I found the site I emailed my doctor and asked him to have a look. He only emailed back to me saying to try some sort of costiosteroid (spelling?) cream. Arggh. I read that PN was only recognized a few years ago and that most doctors don't have a clue about it. Great. Well, I don't know much about Pudendal Neuropathy yet, but I thought maybe it would help to let you all know about it, I don't think I've seen it mentioned on this site yet, but I haven't had time to read everything though. Another good thing I found on the forum at tipna.org is a seat cushion that everyone over there is raving about. They aren't supposed to sit, but when they do they need special cushions to keep pressure off the pudendal nerve and their genitals. They found this at an interstitial cystitis website: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=DailyComfort-ChairCushions.html. It looks really comfortable and I am going to order one to pick up the next time I get back to the U.S. Hope this maybe helps somebody.
CommentSorry, that link above didn't work. Let me try it again. http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=DailyComfort-ChairCushions.html If the whole thing doesn't get put as a link, just copy and paste the whole thing.
CommentHi, I just wanted all of you women out there that are suffering from Vulvodyina that I was cured!!! I had a surgery about 5 years ago at the U of M in Michigan by Dr. Hope Haefner (not sure if I spelled her name correct). Anyway, I had a surgery called a Vestavolectimy of the Vulva and it has 100% cured me! I never imagined being able to have intercourse without pain, but now I can! :o) I hope any of you women out there suffering try to contact the U of M. They specialize in Vulvodynia, and I'm sure they can help you like they did me! Sorry for any spelling errors, I'm not sure how to spell the name of the surgery. Lisa
CommentI have been on Elivil for about a year now, and decided to discontinue using it due to the bunch of weight I’ve gained. What is the best substitute? I have heard of Norpramin Effexor, and Neurontin (they might all be the same thing) Have you guys tried any of these after using Elivil and which one would you say is the best to try next? Which one has the mildest side effects? Thanks
CommentHi, I posted earlier. Katie, thanks for your reassuring words. I am trying to think positive. I have a question about a symtom I have. sometimes it's an overstimulated feeling. I have read other women have this and drugs help, but since i cannot take any medications. Does anyone have advice on what I can do to relieve the discomfort. Sometimes it drives me crazy!
CommentUPDATE - I saw Dr. Goldstein this Friday. He and a physical therapist examined me and feel that all my pain is due to Pelvic Floor Dysfuction (not just part of it) and not related to the rash/herpes outbreak that had occured. This is really really hard for me to grasp but they said that a bad irritation or infection can thow PFD over the edge. Also, they explained if I had nerve damage from an infection, I would have responded to Neurontin and Elavil (both which only made a very slight difference at a moderately high dose). They further explained the location of my pain is where the pevlic muscles meet causing the constant burning sensation. (Like when athletes are exercising and they say "feel the burn"). My muscles are always tight and spasming down there. I guess I'm going to have to accept this diagnosis since it makes sense that medications that help nerve pain don't really help me, and the things that helps muscles do help.(exercise, hot baths, stretching). So the bottom line is that I need to continue on with my PFD physical therapy and begin to take Effexor. Effexor apparently works for "general" pain more than a neoropathy. But he explained to me that the meds will only be 20% of what will make me better--- the rest lies in physical therapy. I am going to hang in there with the lady I am working with now and if after a month or so I don't see a noticable improvement--I may contact the therapist that assisted Goldstein on Friday. It's so tough when I've gotten so many different answers in the past couple months but I'm going to follow through with this treatment plan for a while. Of course I wish just taking a pill would cure me, but I guess I have a lot of hard work ahead. I feel positive about Effexor in some ways--it seems to help some of you and at least it causes weight loss and not weight gain like Elavil! I'm scared of the sexual side effects but I am going to try and keep them out of my mind as not to "suggest" side effects to myself when they really are not happening. I'll post after I've been on it for a while. A word on sex... everyone be happy for me. Even though I got another explaination that made me cry and feel frustrated.. I managed to have fabulous sex yesterday for the first time since all of this started. Thank goodness for small favors. If anyone has advice about PFD please post. Wish me luck!
CommentHmm.. wonder why my update has shown yet... if it doesn't by tomorrow I'll post it again. A word on PUDENAL NERVE issues. I went to go see the best urologist in the U.S. when I thought my problem had a urological base and asked about pudendal nerve entrapment because it sounds a lot like some of the things we suffer from... his response to me was very gravely "Do not even go there". He told me about a patient of his that saw him years after going to Housten for the treament with two huge scars in his butt cheeks and wasn't a bit better. He told me these people are "on the fringes of medicine". I'm not saying the condition doesn't exist, but it seems pretty spooky to get treatment for something they only know about in Texas and France. Just a word of caution to those thinking about traveling down the PNE route...
CommentDear All- In past posts people have asked me if they can get the supplements that my MD in California prescribed to me to treat the yeast/bacterial overgrowth that was both digestive and vaginal. Many of you know I have had great success with the help of Dr. Metzger in California. I was doing some web searching and I found a site that sells the same supplements I take for a better price and they are available to everyone. I have been taking Biotics Research Corp Caprin (Two with breakfast and 2 with dinner) and Ortho Molecular Products Uva Ursi (two w/breakfast and 2 with dinner) for the past 5 months. Within two weeks of taking the supplements and remaining on the low-oxylate diet, taking calcium carbonate my burning and itching subsided, my Bladder infections subsided and I began my journey to becoming better. Please feel free to ask any questions or you can also read my story that began in July of last year and imporved greatly in January of this year. Here is the website to purchase both products...http://www.illnessisoptional.com/ace/brand.asp?MnfID=1138 is for the Uva-Ursi and then click on Brand name for Biotics and click on Caprin. I hope this helps. I still am looking for a place to purchase the Argentyn 23, Purified colidal silver that has been amazing at treating a vaginal infection when I have needed it in the past. Right now I believe you have to be a health care professional to purchase it. If you have any questions you can e-mail me at margaretmelkins@msn.com or post a question. I am very excited to share this information. Take Care! Margaret
CommentThis is the general website www.illnessisoptional.com. Good Luck!
CommentI found a place anyone can buy Argentyn 23 on line! And again it is cheaper than I pay. Here is the web page http://www.emersonecologics.com/ProductInformation.asp?BrowseBy=ARGE2 Please free to ask me any questions. Margaret
CommentCandi - I was reading some of the past books and wanted to ask you about QXCI testing...I read how bad you used to be and all about Wendy and her suggestions. Can you tell me more about QXCI...is this the same as Kinesiology/chiropractic medicine...and ARE YOU BETTER? Can you have intercourse, etc. Don't mean to open this can of worms, but am very curious as my boss just went to see a kinesiologist and I'm wondering if that should be my next move...THANKS!! CommentDont bother with the QXCI. It was a really amazing thing, but I worked with someone who was new and it was really confusing. I was told things that were very true about my health as well as me personally, but what helped me the most while seeing her was her knowledge of homeopathics and herbs. Go see the Kinesiologist and learn how to test yourself on everything. That has been what has helped the most for me. Wendy taught me. Have you gone to her website? www.vulvadyniahelp.com Shes a great lady. I am not 100% as I have issues with Fibromyalgia too, and dont test myself all the time. When i stick to all positive foods I have no pain, but its really hard to not eat bad things. I wear jeans daily now and cristened my new house today so yes, I can have intercourse most of the time , and it didnt hurt one bit today either :o) Hopefully the person you are going to see is good. If all they seem to want to do is shove supplements at you, find someone else. I never had to see one since Wendy helped me learn how to test myself. It took a bit of practice.
CommentI haven't posted here in a while, but I just checked in and read quite a few posts. Many of you talk about yeast, of course this is because chronic yeast infections is what many vestibulitis sufferers have in common. After many months of struggling with trying to reduce my vestibulitis symptoms, I finally was inspired by some postings on this site to pursue the problem as being caused by yeast. I'm not just talking about just vaginal yeast, I mean intestinal yeast overgrowth, which can cause vaginal infections and a whole lot of other problems including fatigue, allergies, depression, etc. That is because the yeast produces toxins that basically poison your system. In my search for a test for yeast, I found a website www.health-truth.com. It is by a nutritionist named Michael Biamonte who has an office in New York. I decided to pursue treatment with him and started in February. I feel that my symptoms are gradually improving, but the problem with yeast is that it takes as long as six months to a year to get rid of it and during that time, you will experience die-off reactions which make your symptoms worse. I was waiting to hopefully post a success story at some later date, but it is so hard to read about people's suffering when I think I know what could help many of them if only they knew. Incidentally, Dr. Biamonte (PhD, not M.D.) was familiar with vestibulitis and has successfully treated others with this problem. Basically his program begins with several weeks of a parasitic cleanse, then you begin a low-carb, no starch or sugar diet (berries, melons, and granny smith apples are the only fruits allowed, and there are no grains allowed on this diet). During this time you rotate through five different herbal anti-fungal's taking each for four days, then switching to another. Probiotics are introduced after 2-4 months on the anti-fungals. This is the type of program you will get from a naturopath. Just taking diflucan, or just probiotics alone will not take care of the problem for many people. Dr. Biamonte has built his practice around treating this problem and has been doing this for about 15 years (I think). I am consulting with him over the phone. He treats people all over the world. I didn't want to make any particular recommendations until I am completely cured, but I do feel this is the right approach for me (I am sitting here wearing tight jeans when all I could comfortably wear before these treatments were jogging pants). During my treatment so far I have had athlete's foot which has come, then gone away by itself. I have had several obvious vaginal yeast infections which have abated by themself (though there is always a little white discharge which is irritating). I have gotten very fatigued on some days with this treatment and occasionally get red spots under my eyes (allergy). These are all signs of die-off, which is a good thing, although when I'm in the middle of another yeast infection, it does feel discouraging for a while. I just hope this info can help someone. This type of treatment is not cheap and unfortunately not typically covered by insurance. I will post an update later to let everyone know how it's going, but I am encouraged so far.
CommentI"ve been suffering from Vulvodynia (developed from a raging yeast infection 2 yrs ago) and have tried all sorts of treatments/doctors over the course of 2 yrs. The latest suggestion is Physical Therapy - has anyone gone through a PT plan that they would like to share? For pain, I use Neurontin 900mg/daily, steroid cream and several hot baths w/ baking soda & thongs! All of my pain/burning occurs Monday-Friday, due to sitting straight up in my (now padded) office chair. Sat-Sun, I"m okay. Is this the same for anyone else? Has anyone been cured from this condition?
CommentKatie - I just read your 5/8 post. I'm very interested to hear how things go w/ you. Our situation seems similar. I should of mentioned above that Neurotin doesn't really help me either, but my Doc insists that i stick w/ it. I'm leaning now towards PFD seeing no pill/vitamin has made a difference in my pain. Thanks for your post.
CommentDoes anyone know of any support groups in the Nashville, TN area? Please let me know - I'm going crazy with all this. I had been relatively pain free for about 2 years (after suffering for about 13 years). About 6 weeks ago, I used monistat for about 3 days in a row and developed the same chronic pain that I experienced so long ago, but have been able to keep under control lately. Lately nothing is helping. Please help if you know of any support groups in Nashville or surrounding areas. Thanks so much everyone.
CommentHas anyone heard of this? http://www.neocutis.com/article.php?sid=69 It's a "new" treatment. I am wondering if anyone has tried it. Thanks
CommentWhy do my posts keep disapearing on me?
CommentTO SUE: I have just been prescribed Effexor after having no luck on Elavil. I was just wondering where your pain stems from. Mine apparently is muscular and I was hoping it will work for me. ELAVIL WEIGHT GAIN: To the women who was curious about non weight gaining anti-deps... apparently Pamelor is supposed to be like Elavil but with less side effects. Effexor, they tell me goes in the opposite direction of Elavil-- instead of sleepiness and weight gain you get restless and lose weight.
CommentHi Katie. Just wondering what effexor is and how it's supposed to work...is it like a muscle relaxer? Also, has ANYONE been prescribed valium to relax the muscles. Apparently, there are two muscles that run from either side of the body and hit directly at the 4 and 8 o'clock site of the vestibule...so it they are tense, this can cause pain with intercouse and irritation. I'm seeing the doctor tomorrow for my follow up after taking the premarin cream for 30 days. I'm now thinking my problem is hormonal related and I'm going to have him check my hormones...although I'm only 31. Weirdly my periods started to change about 1.5 years ago...they got much lighter and didn't last for as long. Also, I've had hotflashes in the past and just had 2 over the weekend. God, that would really suck if I were going through menopause. I mention this b/c my face keeps breaking out around the nose area and I've been to dermatologists, etc. anyway, while I was on the premarin my face totally cleared up and my skin in the vestibule area looked pink and nice. After stopping the premarin, within 5 days my face broke out in that same annoying rash, pimples, whatever and my vestiule skin looks red. I don't know if intercourse is going to be painful, since I don't have a boyfriend to test it out. This is getting super frustrating and I'm really at a loss here. I have no idea what the next steps will be. Has anyone had this linked to hormones and what have they done about it?
CommentI have posted before and I thought I would update everyone to things I have learned. I stopped taking Elavil because of the 20 lbs. I put on in 3 months. Being 5'9 and 120 before, I got even more depressed because I wasnt used to this much weight esp. in such a short amount of time. I have been able to lose about 10 lbs, but, all the weight is in my stomach and love handles...its weird. Weight issues aside, it did make me tired ALL the time even thought I had been taking it for 6 months. Pain was slightly better, but nothing to write home about. I was also dizzy all the time. Getting off of it made me feel horrible. The week after I stopped taking it, I had horrible headaches and was sick to my stomach all the time. I felt like my body was in shock and totally flipping out. After having vulvodynia for two years now, I am getting impatient and losing hope to recovery. I feel like I have tried everything and researched everything. I started Biofeedback around the same time I started the Calcium Citrate (4 weeks ago) and for some reason, my pain feels worse. Biofeedback has consisted of the machine testing my pelvic floor muscles and daily exercises, vaginal massages (which hurt) and yesterday I had ultrasound for the first time. She filled a latex glove with warm water and put the ultrasound gel on it. She layed it over my vagina and did the oltrasound over the glove. (the gel didnt touch me, thank God) Apparently heat waves and whatever else are supposed to transmit through the water and relax the muscles at the opening of my vagina. She tends to think I have really tense pelvic floor muscles causing my pain. ***I wanted to also mention that I had an MRI done last Tuesday*** I injured my hip in Jan.03 and overnight one day in April 2003 I entered into this hellacious journey which is now my everyday life. I have had the symptoms of VV every since. I read a post in Guestbook 23 (i think) that said a women had a hip injury causing VV. I get my results this afternoon, but I think it could be a very likely cause, considering I still have hip pain. I am only 22 years old and I go thru these really bad depressions because I feel like this is controlling my life and everything I do. Chlorinated pools, the ocean, urinating, sex, everything hurts and I'm so tired of it. It's too early to tell if the biofeedback is working, but can calcium citrate be making it worse. Also.. I see people taking Efforex (sp). What are the side effects? I am in grad. school and the last thing I need is something else causing a distraction in my life the way VV has. Sorry this is so long... But i have gotten comfort thru the past year and a half, reading everyone's comments in the guestbook, and had I not read the one about the hip injury/scar tissue=VV, I would have never thought to get an MRI. Lets just hope it tells me something. Good luck to everyone out there, Believe me...I feel your pain.
CommentHi B - sorry to hear you're going through hell...I know how frustrating this is. Please keep us posted on the outcome of your MRI. Funny enough, my hip started to bother me last summer - I think from working out too much and I'm wondering if maybe I injured it somehow...my problems started afterwards, too. God, this is super frustrating! Good luck...
CommentHi Laura: I had my hormone levels tested recently and my estrogen and testosterone levels are very low. I had been using a small amount of Estrace cream topically, but then the burning got worse, so I started applying 1/4 tsp. Estrace cream topically per what Dr. Stewart says in her book (The V Book). I've gotten rid of the constant burning, but I haven't attempted intercourse again yet. I still will feel sore in the perineum. That's where I've always had pain, stinging and soreness. If I accidentally scratch myself in that area, I'm in pain. I've been doing Kegel exercises on my own and taking magnesium pills before bed to relax me. I hope you find some pain relief soon. Sue
CommentHello, I have been on Effexor for over a month now. I had vulvodynia and vulvar vestibulitis. The constant burning is completely gone and now I am only left with some pain in the vesitbule when touched. Sex has gotten much better. The side effects were really bad the first few days, I had cold chills, headaches, mood swings, and just an overall bad feeling and I was so tired. But that was only for like the first 3 or 4 days. After that the only side efeects I've had since then restlessness, not being able to fall asleep right away (which I can counteract with chamomile tea, concentrating on my breathing, and making sure I take the pill early in the morning) and waking several times during the night. Also, sometimes the pills give me strange dreams or nightmares but it's not so bad. I have not expereienced any weight loss or weight gain. Overall, I think the side effects are **WELL** worth it as they did get rid of the constant burning. And I do see other improvments all the time. So far, I've been able to have 2 completely pain free sexual encounters. I am also doing stretches and phsyical theraphy which helps a lot too. If anyone has any more questions about my experience with Effexor please feel free to e-mail me at MermaidShimmer13@yahoo.com Best of luck to everyone. J.
CommentI've never read about Botox injections on this site but I figured I'd ask anyway. Has anyone ever tried Botox injections or has heard about anyone who has tried them? What was the experience?
CommentTO NTS - I have been undergoing physical therapy for about a month now, and while I'm not cured, I think I am begining to see a correlation between the days I feel better and the days I do my P/T twice a day as opposed to once a day (my therapist gave me the option of once or twice a day). I also try to take at least one very warm bath a day and two if I can fit it in and also take 2 mgs of Valium about 2-3 times a day. All these things aimed at muscular improvement seem to help more than anything else I've tried. Neurontin and Elavil seem to be a first line of treatment for our pain problems but can be frustrating since everyone needs to reach the right dose for them gradually and then be on that dose for a certain amount of time before it "kicks in". I haven't tried Effexor yet b/c I just stopped the Elavil this week and want to give myself a chance to "even out". It's hard to describe the P/T but it's a combo of both external stretches I do on my own and internal massage she performs on me along with some ultrasound stimulation. We'll see how it goes. TO LORI: check out www.nva.org for support groups in your area. TO LAURA: As I said above, I take Valium everyday to help with muscle relaxation. In its lower doses it is used as an anticonvulsant and seems to help me at least a little bit. If you have muscle tenseness you should look into a Pelvic Floor Dysfunction diagnosis. TO ALL: It seems like we all have questions about medications and I think it's great that we can share our personal expiriences about their dose and effectiveness. However, I am a big believer in research and I think sometimes the FAQ section of this site which outlines all of the available treatments for vulvodynia (what medicines, surgeries, or lifestyle changes are out there and why they may help us) goes overlooked. Whilte it's no match for our personal testimonials, it's a great resource to get a general idea of what you may be suggested to take/undergo etc. Also, I purchased a book from the nva website called "The Survival Guide to Vulvodynia" and it has alot of info in it too (only 10 bucks!) not just about treatments, but about coping strategies as well. The best patients are knowledgable patients. One last thing, I can't urge you all enough to ask your Drs. for pain medicine if you need it to get through tough times. It does not make you weak or an addict to use narcotic pain killers while you are waiting for your treatment plan to kick it. Again, thanks to all who read my posts and respond. You keep my chin up and my hopes high!
CommentHello. I can't seem to find the post where someone suggested a lubricant that could be purchased at drugstore.com. Does anyone know? I tried looking it up at the sight and of the products they sold, 2 were familiar, and 2 were unfamiliar. I wrote a few weeks ago, but I was one of those whose posts got lost when we went to guestbook 24. At that time, I had just been to the gyn after using testosterone for 6 weeks and then Estrace for 6 weeks.The testosterone healed the tiny tears I had , and then the estrace built up the skin of the labia that had thinned. The Dr. was really pleased, as was I because I wasn't irritated like I'd been all winter. I am half way through another 6 weeks of Estrace being applied to the labia and entrance to the vagina. I do this once a day. If all goes well, I won't have to go to the gyn until the end of December. I notice that I am not as sore after intimate relations as I had been. Best wishes to you all.
CommentHi Katie, thanks for your warning about pudenal nerve issues -I'm dropping that idea like a hot potato!!
CommentQuick word on PNE - When I saw Dr. Goldstein on Friday I mumbled something about PNE to him and the physical therapist and they told me that "that's when your pain is only when you sit and dissapears when you stand or lay". They didn't seem as freaked as the urologist about it but I still wouldn't risk it. I myself waiver in my belief of it. I read about it on an Interstitial Cystitis site once and how one guy was cured. Someone up there posted about having pain "Monday through Friday while sitting at work". See now that sounds like a classic PNE diagnosis to me (if it does in fact exist), but it could also be Pelvic Floor Dysfunction because sitting and stress aggravate that as well. Sheesh PNE is a tough one. Who really wants to go to France and get operated on?
CommentThank you Laura for your response. My MRI didnt show anything wrong, but the Dr. did say I had tendonitis in my hip and wants me to go to PT 3x a week now. I still think that the hip caused something to go wrong with my Pelvic Floor Muscles and ultimately lead to Vv. Another thing thats interesting, my physical therapist was giving me a vaginal massage, and she said she felt scar tissue or fibroids. She said she has never felt that in someone unless they had given birth or had surgery. I dont know what that means... or why I have that, because I had neither of those. Personally I think something happened to my pelvic floor because of my hip and in turn caused me to be super-sensitive to everything. Those of you in PT, I was told it could get worse before it gets better...so, I am going to do this a few more weeks and then I will update everyone. Take care ladies.
CommentHello - I have been on and reading for 8 months now. I have never written; it was alomst too hard to talk about. But I am finally feeling better from the serious pain I was in for so many months, and I thought I would share my progress in hopes it may help someone out there. I have DV, not VV, and it was agonizing! I couldn't sit, I was so red it was actually purple, the only relief for a while was sleeping. I began to use emu oil (from Longview Farms, excellent company, they are on the web) multiple times a day, and that really seemed to help help with some of the pain. It took the overall agony away. You need to put the bottle in warm water for a few minutes to make it apply better. I was also on Elavil starting at 10mg. I feel like that has started to work only recently, after I increased the dosage over time to a current 35 mg. I am not totally better, I still have much pain during my period, and here and there depending on the day. But I have to say, I am about 85-90% better, TG. I have also practiced yoga and meditation, as I truly believe with all illness there is a mind body connection. I wish I had time for more, and cannot say if that has ben helpful or not, but maybe. Finally, I totally cleaned out my system. No caffeine, sugar, white starches, etc. and added flaxseed, olive oil, green tea, brown rice, Aloe vera juice, pure water, etc. I read by Dr. Andrew Weil that the body wants to be healed and healthy, and will work towards that if given the chance. So, for me, I had to work on being healthy all over. Treating this disorder is many faceted. I wasn't going to let it get the best of me. If anyone has any questions, I will keep reading in case I can be of any help. I have my own question. I think I may have bacterial vaginitis, or other yeast infection, as I have a milky white discharge that will not go away. I was treated with Diflucan twice. It lessened it a bit, but not totally. I have been tested for every other possibility (STDs, etc) but nothing was positive. My doctor said I don't have an infection, but I know I do. Has anyone else had this experience, and, if so, how can it be treated? I am reading a lot in books and on the internet about natural ways to treat yeast and/or bacterial vaginitis, but I am just guessing that is what I have and the remedies so far are not working. Thanks, all. Be strong.
CommentTo the woman regarding the tearing skin: Try emu oil! It is SOOO soothing, and is a broad-spectrum healer. It has helped m vulvodynia, healed scars I had, cured my father's knee pain, etc. Not cheap, but worth it. Also, I have not gained any weight on Elavil, but I run/walk daily and lift weights so that may help. I read some posts regarding Argentyn 23 for infections. Would you suggest I try it for the white discharge that is not supposedly yeast according to my doctor, but doesn't seem to be anything else, either? Thanks.
CommentTo all the ladies that are on Elivil (amitriptyline) **PLEASE STAY AWAY FROM ANY KIND OF TEA**, because it may decrease the absorption and/or activity of the this medicine in the body. Also please go to this web site: http://www.vitaminworld.com/vf/healthnotes/HN_live/index.htm?Hcontent=All_Index and click on the “”Safetychecker by Drug”” which is located approximately in the middle of the side bar menu. Good thing is that you can search either under the generic name or the original name of the drug. It might not be the same for everybody, but it definitely made a difference for me. Also, avoid St. Johns Wort, and take Q10 and B-complex. So, please check out the supplements that you are taking in addition to the prescription medications, because, mixing too many things is not very good.
CommentThanks to those who responded to the tearing. I have used emu oil for years (no significant improvement) and estrogen cream, dmso, testosterone, cortisone, antibiotic cream, castor oil,(great for tight muscle pain). My question now is, does anyone think that carrying the herpes virus without any outbreaks that I know I have had ever, but I do test positive, that maybe this could cause the skin to tear and stay red and never heal? I wonder if I got on Valtrex daily if maybe that might help. I am really at my witts end. I really don't want to have the surgery my gyno oncologist (I don't have any cancer, he is just last resort DR as the rest have bailed out).He want to remove all the skin in the vaginal area and replace it. I don't see why new skin would take if the old skin won't heal for some strange reason. My biopsies only show inflammation and athrophy. I haven't had an infection or yeast problem in 33 years. Any thoughts on the herpes idea would be appreciated. I am grasping........as yall can probably relate. We have to figure this thing out ourselves. I don't think most Drs have a clue.
CommentLadies, please listen!!!! If you live in the nyc area and have not found any treatment that works please go see Dr Monica Peacocke. She has found a reason and solution for this problem. She is only about 2 years into these findings and everything made so must sense when I met with her. First and foremost she really really listens to you and understands. I am sure that there are many causes and complications with vv that make every case different, so her theory may not work for everyone. If you are like me and have had vv for years and have never found a treatment that works it is worth a shot. Dr Peacocke's finding have to do with vitamin D. Please e-mail me if you want, I am so excited after seeing her yesterday for the second time. I will start my treatment tomorrow and see how it goes! She said that it could take 4-6 weeks to improve. It is so frustrating to read stories from so many women suffering, it is nice to have some new hope!
CommentJennifer, this is the link to the lubricant, O'My, to which I referred in my 5/31 post: http://www.drugstore.com/products/prod.asp?pid=72118 Also, you can read more about it on www.omyonline.com
CommentHas anyone taken Yeast-Cleanse capsules by Solaray? I wonder how long you need to take them to combat a vaginal yeast infection? Also, doesn't it make your breath stink? It has garlic in it and it seems like I can taste it throughout the day.
CommentTo Susan: Please post the vitamin D theory here that you got from Dr. Peacock. I'm sure we would all like to know what this new theory is. Thanks!
CommentHope-Thanks for the name of the lubricant again. The one I had used was discontinued a few years ago and the few I've tried since then I haven't particularly liked. Also, the emu oil sounds promisimg. I'll have to look into that some more, too. Thanks ladies!
CommentI took YEast Cleanse by Solaray. In order for them to work you have to eat no sugar and very little carbs. I burped up throughout the day, but my breath didnt smell garlicy. I didnt notice that they helped for my yeast infection after 2 weeks! So I did boric acid supps. The girl at the health food store tried them and swore by them so I guess it really depends on the person. They didnt work for me. Grapefruit seed extract drops all on its own works for the entire body and Olive Leaf too, take those together.
CommentTo Liz Mack: Liz, I haven't really been posting here for a while but I do read the site from time to time. I know of your suffering from your posts and hope you decide against surgery. My wife still gets the recurrent tear and we never got an answer as to what was causing the problem. Neither of us tested positive for herpes and there were no signs of H.P.V., We have been over this time and time again with no answers. The applications of Estrace and Estrace mixed with testosterone and other medicines did nothing. Surgery to repair a rectocel and form a new scar in the area of her old episiotomy scar did not stop the paper cut like tear from reoccuring. I'm sure you are desperate for relief and if you decide to have surgery I wish you the best. Years go by and the medical community still has no answers while you ladies suffer and try to figure this out on your own. Best of luck. Frank B.
CommentCC- According to my doctor in can be used for all most eveything, yeast infections, bacterial, strep, gardenella, etc. It is an antimicrobial, antibacterial and antifungal. My doc recommends 2 cc inserted with syringe at bedtime untiil symtoms subside. I used it twice a day, 2cc morning and 2cc at night. I also put some in a spray bottle and spray it on the vulva three times a day until the itcing or irritation stops. It works amazingly! Margaret
CommentTo Frank, thanks for replying. Your wife shd feel really blessed to have a husband who is so caring and interested and with her totally in her bad situation. I am also lucky to have a compassioniate and understanding husband like you. It makes it a little easier to handle with someone on your side and not blaming you for messing up their sex life! ( or lack of.) I am still not sure about the surgery. As I have posted in the past, I have had at least 4 surgeries on the skin and each time it made things worse, so you would think I wouldn't even consider it. But, sex is completely out of the question, not even possible, due to the pain and tearing and bleeding, so if I don't at least try something different I might be like this forever. I don't see any improvement insight unless I just stumble upon something myself while reading all these posts. The Drs have thrown their hands up about my situation. I wish I had other problems associated with this so I could pin point what caused this problem like yeast or birth control pills but I don't. Thanks for helping all of us women out there. It is a true bummer for all of us involved.
CommentWe are currently moving to Ogden, Utah and wondered if there was a doctor in the area for Vulvodynia? It is close to Salt Lake City too. If anyone knows anything, please let me know! Thanks!
CommentI write this with the hope of helping others.I will put my story in point form to make it easy to read. If you want to contact me, please do so by e-mail. - I am 27 years old - All STD checks negative, including Herpes by Western Blot (I live in Canada, but I sent a sample to Univ. of Washington. This can be done, but you have to pay for it yourself about $129 CDN for the test and then overnight FedEx, so all together over $200.00). - Symptoms included red labia (minora and majora), peeling skin on labia minora, a red bump while using Aristorcort - a perscription cream for healing skin, shooting pain at times, redness around anal area as well and the groin (where your panty line rests), general raw and irritated feeling. My redness and raw feeling was constant for six months. - Symptoms started after a yeast infection - treated with Diflucan, then the infection came back two more times over a three month period. The Diflucan helped, but I could still feel an irritation. Also ended a long period of celibacy during this time, also had starting working out at the gym and I moved. - What helped - I moved again (I think the water where I was living was harsh on my skin and not helping...I have had skin problems on other areas of my body, including eczema), showering instead of bathing, decreasing stress in my life (not that I think vulvodynia is mental, just that stress in general makes any aliment worse), stopped wearing pantyliners daily, which I had done for years, sleeping without underwear. Basically, treating the area with care. I am not 100% yet, probably 80% better. - I also have IBS and was diagnosed with a mild case of depression. I recommend to anyone to find a good gynecologist. Buy the V Book, Dr. Stewart, and Dr. Glazers book. Get all STD checks, then go further if you need to (a dermatologist perhaps or a specialist). But during this time, try the simple things that I did and you might be surprised that the answer lies there. Most of all, don't give up hope! I got better, you can too. - My heart goes out to all of you. I thank you all for contributing to the guest book. It was a great source of comfort to me when I couldn't talk about my problems. Thank you to Dr. Glazer as well for the site. Please contact me by e-mail if you have any questions about my story, Thank you
CommentCC- I was refering to the Argentyn 23 you asked about earlier in my last post. Sorry, for forgetting to included the name of what I was discussing. Let me know if you have any questions. Margaret
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CommentHello. I visited the doctor on Thursday and have been really sad the last 2 days...he thinks there is a possibility that I am going through early menopause...I'm only 31, no husband and no boyfriend either. This has been hard to deal with, on top of the vvs. He drew my blood to test me for my FSH levels, and i should find out something next week. At this point, I'm going off of the elavil because it's not working. I'm still tender at te 8 o'clock area and nearly jumped off the table during the exam last week...he was giving me a colposcopy for my abnormal pap, so I'm sure the vinegar didn't help the situation. I just got out of bed (it's 3 o'clock) because of this almost migraine-like headache that I'm having...it's actually making me nauseous. UGH...and I only missed 1 night of the elavil..HAS ANYONE HAD THIS PROBLEM? I feel like shit. As far as the vvs...i guess we'll wait to see what the hormone levels read before we do anything else. I also wanted to ask HAS anyone heard of this gene that a Dr. Ledger in the cornell medical center supposedly found...I read this back in guestbook 8 or 11. Supposedly 50% of women with vvs have this gene and he has supplements to help work against it...has anyone seen Dr. Ledger? Also, SUSAN, please tell us more about Dr. Peacocke and Vitamin D. That's all for now...I have to lay back down...this headache is unbearable.
CommentHello. I visited the doctor on Thursday and have been really sad the last 2 days...he thinks there is a possibility that I am going through early menopause...I'm only 31, no husband and no boyfriend either. This has been hard to deal with, on top of the vvs. He drew my blood to test me for my FSH levels, and i should find out something next week. At this point, I'm going off of the elavil because it's not working. I'm still tender at te 8 o'clock area and nearly jumped off the table during the exam last week...he was giving me a colposcopy for my abnormal pap, so I'm sure the vinegar didn't help the situation. I just got out of bed (it's 3 o'clock) because of this almost migraine-like headache that I'm having...it's actually making me nauseous. UGH...and I only missed 1 night of the elavil..HAS ANYONE HAD THIS PROBLEM? I feel like shit. As far as the vvs...i guess we'll wait to see what the hormone levels read before we do anything else. I also wanted to ask HAS anyone heard of this gene that a Dr. Ledger in the cornell medical center supposedly found...I read this back in guestbook 8 or 11. Supposedly 50% of women with vvs have this gene and he has supplements to help work against it...has anyone seen Dr. Ledger? Also, SUSAN, please tell us more about Dr. Peacocke and Vitamin D. That's all for now...I have to lay back down...this headache is unbearable.
CommentStart Effexor tomorrow. Wish me luck!
CommentLaura, Many years ago I was treated by Dr. Ledger, and I am aware of his new findings. He still hasn't found a treatment that takes this affliction away. I know that he has done a tremendous amount of work in this field and I am sure that he had helped women. I did not care for him and he did not help me. Dr. Peacocke's theroy is relatively new and she can actually show you through blood work and urine tests if you are vitamin d defficient. According to her this defficiency is the reason that we suffer. Only time will tell ( for me) if she is right. I have started my treatment.I also had a rough time going off of the elavil, i really hated that drug! e-mail me if you want more info.
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CommentHi, ladies - I DID IT! I was able to get rid of the UTI I got about 3 weeks ago with the Col. Silver! I also took garlic pills (about 4/day), 5,000 mg of Vit. C, and Cranberry pills. It took about 10 days to totally disappear, but I took the AZO for the symptoms. Anyway, I was sooo excited to know that it DOES work! I will never take antibiotics for this again!! :-) For you who don't know, I fully believe taking 3 rounds of antibiotics within a year 2 years ago is what gave me the VV (from a sub-clinical yeast infection that went untreated because the docs kept telling me I didn't have yeast!). I'm finally 95% better by following lo-ox diet, Calcium Citrate/Mag, Grapefruit seed extract, EPO, and ocassionally Healthy Trinity (has 3 types of probiotics -- is expensive, but wonderful!) to replenish my healthy bacteria, just in case the yeast tries to rear it's ugly head! Estrogen cream - it helped me, I believe. I used it for about 6 months, I guess. I do think it helped my vulva to get thicker and heal. Ocasionally I will still have some irritation (especially at certain times of the month - hormone related, I think), but no burning at all! DON'T GIVE UP! This can be beat! I was there with you all... burning and in constant pain for months, then I finally started to treat it like a yeast problem, and started getting better. I tried the Elavil, but it didn't work for me. eh
CommentI am so happy to be able to help those of you that have consulted with me. I feel that we have become friends and it is all about Quality of Life!! Most of you want to go forward and not look back...For those of you who I have not talked to, please check out my website: www.vulvadyniahelp.com
CommentI have been using vitamin E capsules as a lubricant as I have been using a dilator to stretch my muscles. I figured out today that the increased itching I have had lately is due to contact dermatitis to vitamin E oil so just wanted to warn people about this. There was some talk a while back about emu oil. For whoever posted about this I'm just wondering whether this is an appropriate lubricant or used purely for it's skin healing properties. Thanks
CommentI've never used Emu Oil though I hear it's very nice. I've been using Sea Buckthorn Oil diluted with Almond Oil (you could use JoJoba Oil as well) and that has been helping a lot for irritation/itching. Also, I've read about another oil mixture that is supposed to be very soothing for the vulvar tissue. Six table spoons of Jojoba Oil, 6 drops of Tea Tree oil and 2 drops of *German* Chamomile oil. I plan on trying it whenever the oils come through the mail. I will let you ladies (and gentlemen) know if it helps at al.. Best of luck. J.
CommentTo Lisa: My wife and I have used vitamin E capsules as a lubricant to prevent her recurrent tear during sex but the vitamin E oil did not help. She also ended up with an some kind of yeast infection. I believe some of these products such as vasoline trap bacteria and cause it to multiply. I have read here and on other sites that the vagina naturally discharges to clean itself and many of these products interfere with that process. Many of the marketed lubricants contain propylene glycol which seems to be a problem for ladies with vulvodynia. Someone posted a while back of a lubricant that did not contain this chemical, it was available through mail order. Best of luck.
CommentHI. I suffer from vulvar vistibulitis and I am interested in Dr. H. Glazer's biofeedback. Did anyone try it? Does anyone have any success stories about it?
CommentHi: I posted the message below while ago but haven't heard too muchabout it. Some people wrote back and said they were thinking of trying it. Has anyone tried it yet? Any luck? I hate to have one more thing taking up space in my medicine cabinet! Cheryl Previous Post After doing some research on the Net, I came across a company that is conducting a study with their product after realizing promising results with VVS patients. http://www.neocutis.com/categories.php?catid= The product is called Neocutis Bio-restorative Skin Cream. Hasanyone ever heard of or used this product? I'd be interested in hearing your feedback. Thank you!
CommentIt seems that there is a pattern or link when I use facial or body skin care products (moisturizers) containing acids such as lactic, glycolic etc. I seem to experience buring deep in vagina and some in bladder. I have mentioned this to doctors, but they do not know. If any one has experienced this, please contact me asap via email. Thanks
CommentLisa - I have not used emu oil as lube for sex, as it seems rather thick for that. But, I feel when the Elavil had not kicked in just yet, it took away the burning, stinging pains from the outer labia, and soothed the inner labia. It also helped to thicken the skin all around after the estrogen creme had thinned it out completely. Laura - Hang in there, girl. There is so much out there on headaches, too. Just do research on the web. My brother in law suffers from cluster headaches. I have seen the pain. Everyone, please try deep breathing exercises and meditation. Gaiam is an excellent company with CDs to get you started. Deep breathing calms your nerves, slows heartbeat, decreases stress levels, and I have read that it is a direct help to decreasing pain in the body. Meditation the same, the mind can cure what the body is fighting. This is real. When I meditate, I feel so much better that night and the next day. There is a real mind-body connection. Can anyone post some of the physical/pelvic exercises you were given to do from the therapists? What do they entail? Can we try them at home? Thanks!
CommentThanks for those of you who responded. I heard back from the dr and my levels are normal...I'm not in early meno...thank god. I need to speak to him now, regarding the next course of treatment. I've started to itch again down there and don't know if it's b/c I'm weaning myself off of the elavil or not. I've never had "pain" down there, only when trying to have intercourse and then of course, itching. I've read that elavil is good only if you have "generalized" vulvodynia. My pain is really only in the vestibule. To Cheryl - I've read about that cream on the website and it seems promising. Also, in the Spring 2005 issue of the NVA news, they talk about this cream, too, so word is getting out. I'd also like to know if anyone has tried it...it's pretty expensive $130/ tube, but hey, if it works, it's worth it. Also, I asked before, but no one responded...has ANYONE heard of this gene that Dr. Ledger at Cornell Medical Center has found...I'm thinking at this point to maybe go and see him, since I'm right outside of NYC, but it's soooooo expensive and he's not in my plan. Curious to know if anyone has this gene and has tried the SUMA (brazilian extract) to help counter-act this. I'll keep you posted on my progress. Katie - how is the effexor treating you? Be well, everyone!
CommentLaura- I too only expereinced burning during and after intercourse. Itching and burning would continue when I had a yeast or bacterial infection present or upon any inflammation. Once I began treating my body systemically for yeast and bacterial overgrowth the burning stop. As I have mentioned before I used Argentyn 23 (purified collidial silver) topically and vaginally, then began taking Carprin (caprylic acid ) and Uva Ursi, then also replacing good bacteria with lactobicillus vaginal suppositories. All of this was prescribed for me from an MD in California. I also pursue allergy desentization for candida and progesterone. but I believe beginning the Caprin, Uva Ursi, Argentyn 23 and using the suppositories made the biggest difference. This combination aloud the burning and irritation to stop. My vaginla wetmounts are great and I can have sex without the discomfort. If you would like to speak with me directly you are welcome to e-mail anytime. margaretmelkins@msn.com Take care Margaret
CommentLubricant- I have had great success using unrefined organic coconut oil as a lubricant. Many months ago a woman on this guestbook suggest it and I have found it wonderful. I even have my compounding pharmacists use it to compound my vaginal lactobicillis suppositories. It is light, tastes nice and is non irrritating. It is inexpensive and I purchase it at my local health food store. The brand I use is called Spectrum Naturals, I find it in the cooking section. I have suggested it to other women and some have found it extremely helpful. It seems that if there is chronic irritation, infection or inflammation before beginning intercourse, nothing is going to keep you from being comfortable. I believe you need to treat the tissue and source of the inflammation for the lubricant to really work. Take care Margaret
CommentThis restyled website is not an improvement. Making the page wider so you have to scroll over is a pain. And what is with all those mass mailing entries? This site needs to be monitored and corrected daily to delete all that spam. And the moving Dr. Glaser logo needs to go too- very unprofessional!. We all know he is in charge of this website. We do not need to be reminded over and over again!
CommentElavil Update: I have now been on 38mg/day of Elavil for 11 months. I became almost totally pain free about 24 HOURS after I took the first Elavil pill. (Had to slightly tweak the dosage from 25mg/day to 38mg/day about 5 weeks into the treatment.) And the best part is ... I finally had sexual intercourse for the first time in a year and it was great!!! No pain at all !!!! I feel like a new woman! I think my husband is still in shock. I was so afraid to even try sex in case it put me back in all that pain again, but I just thought, "go for it", and I did. Please do not give up trying to get well. I've been where you all are. Good luck to all.
CommentHi Cindy: That's awesome. Congratulations. Did you have to do anything else besides take Elavil to find relief, such as a diet change or PT?
CommentI'm looking for some advice -- I have posted here before. I am from the US but I live in Mexico where there are few if any doctors interested in vulvodynia. I've had the problem for 12 years, on and off, and I'm 36 now and I want to get pregnant. Unfortunately although I had felt fine for almost a year, I now have severe irritation, itching and burning outside. I would like some advice -- I've decided to come to the US this summer to see a doctor although I don't have any medical insurance in the US. I have seen Dr Meltzer in Chicago in the past and he is very nice but there didn't seem to be much he could do for me. He seemed pretty conservative in his treatments. Do you think I should go back to him? My sister lives in Chicago so in some ways it would be easier, but do you think I should try a different doctor? Is there any doctor who is considered the best in the country? My symptoms feel a little different than they did before -- more about the skin. Optimally, I would want to see a doctor who knows about fertility as well, but I realize this is a lot to ask. Any advice at all will be appreciated. Thank you.
CommentHi aeb, this is PS again. I saw Dr. Jessica Thomason in Milwaukee at Columbia Hospital before I left the country. She is a vulvar disease specialist and the nicest, kindest, most sympathetic, and most knowledgeable doctor on our disease I have ever met. I was a real wreck the fist time I saw her and I fainted in her hallway - they took excellent, excellent care of me. She had me try some things that worked for a while, before I left. I very highly recommend her. However, she is expensive. Well worth it though, if you can afford it. I can't remember how much it cost, though. Maybe she has a sliding scale, I have no idea. My last contact info for her is: Women Now Health Care, Columbia Hospital, 2015 Newport Avenue, Suite 803, Milwaukee, WI 53211, 414-961-5496, 414-961-5533(fax). I wish you the best of luck and I hope you have a good trip home.
CommentHi, i just wanted to write an update about myself. i used to read this site every day looking for ways to help my condition. thank God it has been basically under control for 2 years now! I wanted to let you know what worked for me because maybe it will help some of you. i started off by going on an EXTREME yeast free diet for 4 and a half months and drank a ton of water and took grapefruit seed extract in my water. i still take the supplements daily of NAG chelated magnesium, malic acid and vitamin b complex and vitamin e and topical vitamin e. and another big thing that helped was going to a physical therapist who specialized in deep pelvic muscle pain, i still go to a specialist in NY and would be happy to refer you to either my PT in LA or NY. both are terrific. email me at the address above. Good luck to you all. And please don't give up! something will work. i read other people's entries who wrote the same thing i just did so i hope i can inspire you to try something new.
CommentI forgot to mention that I had vulvar vestibulitis which started after taking antibiics for a yeast infection.
CommentSue- No, all I did was take Elavil to "cure" the problem. But keep in mind that before that I also tried many, many of the things suggested on this web site with absolutely no relief from the pain at all. Thank God I tried Elavil, which was also suggested on this site. (Actually I use the generic version amitripylene. It is very cheap- only $4.10 for 30 tablets. I take 1 1/2 /day. So for about $6.00 a month I am pain free and loving it! Good luck to all!
CommentAs a lot of other women are on here, I am extremley relieved to find that I am not alone. I have had pain ever since I started intercourse with my partner 2 and a half years ago. Niether of us has ever had sex with anyone else and yet still the doctor is convinced I have chlamyida. I have become very disheartened, angry, and generally pissed off at the health service as I realise day by day every antibiotic, medicine or diagnosis is fucking useless. My symptoms may not be so severe sometimes, especially if I dont wear trousers (which can be inconvenient), drink LOTS of water (again inconvenient since I am 18, a student, always on the move and have to carry about 3 litres in my bag most of time because if I run out and dont drink enough, the pain will come back), and use lots of lubricant during sex. The symptoms I have is an acute stabbing pain after peeing and a general uncomfortable 'prickly' feeling around the area. However all is not lost. Recently I decided I will find my own cure rather than relying on my disillusioned health service. I went to the chinese hebal shop in town and explained to them my symptoms. I was given 'Ba Zheng San', which I have currently done some more research on: *Ba zheng san works on 'damp heat' in those parts, which cause UTI's, burning/ pain etc, *It concentrates on building up the white blood cell count i.e. that particlular area's "immune system" (This was how the chinese guy explained it to me, which I thought was strange, as I figured we had one immune system for the whole body, and that working on a specific region's immune system was ratehr an abstract idea....but anyways......) *Has a much more holistic approach than antibiotics, which according to chinese herbalists, dont work. This is because "Classical Chinese formulas, developed over centuries, increase energy, promote tissue healing, detoxify and balance metabolic activity, enhance immune functions, and normalize fluid balance." i.e. they effect the rest of the body also, increasing health to combat re-infection. I've not been on Ba zheng san long, but I can feel symptoms dissappearing. So I am hoping, praying to who/whatever can hear me, that I can finally dare to believe that this is my cure. I'd also urge anyone else on this guestbook to try out herbal remedies. Also diet is important; there are specific food thatreduce damp heat causing bacteria and UTIs, for example, pumpkin seeds, cornsilk, green leafy vegetables etc. Oh...dont forget the cranberry juice (or extract/capsules). I hope this helps, my sympathy goes out to you all experiencing these pains which seem to last forever. But never stop searching for a cure and you WILL find one.
CommentI have a question...Being that I have a constant burning pain and everything and anything irritates the outside of my vagina...what are the least irritating libricants and condoms available. My physical therapist had been using this lubricant during our exercises only to learn it was making my pain worse. I had sex recently with my bf for the first time in 5 weeks and I believe the only pain afterwards came from the condom, because of the spermicide. After I washed it off everything was ok, surpisingly since I'm used to throbbing burning pain after intercourse. I am starting to believe I have VV bc of irritates and diet problems unknown to me. I am going to a new obgyn this Thursday who actually has recovered fro VV. Ill keep an update...but until then, please advise on the lubricant and condoms...
CommentTo Margaret - I have been reading a lot of your posts. You mentioned a clinic in Atlanta that treats vulva disorders - The Center for Endometrisosis Care - I went to the website but didn't see anything about vulva disorders. I live in Nashville and that would be a convenient place for me to go, but didn't want to call them if they only specialized in endometriosis. I've been suffering with vv for about 12 years - I really feel that I need a doctor that specializes in this. My doctor here in Nashville is great, but I'm not getting any relief at all. I cry every day!!!
CommentTo those of you interested in Dr. Ledger, The gene that is linked to VV, Suma and surgery for Vulver Vestibulties. I have been suffering for 7 years since I met my first serious boyfriend (Now husband) and had sex for the first time. It wasn't the sex that triggered it, it was my first yeast infection and bladder infection that has never really gone away since. Ater being misdiagnosed more times then I can count, at the advice of my OBGYN I went to see Dr.Ledger. In about two minutes he diagnosed me, and while I am grateful, my treatment with him pretty much ended with the diagnoses, DNA tests, and signing something to do with "testing they wouldn't pay for but my files would be kept on record for genetic purposes. A definition I found that has the gene that I have in it. Vulvar vestibulitis: Inflammation of small glands at the entrance to the vagina. Vulvar vestibulitis is the most common physical cause of painful intercourse in young women. In roughly half of cases, the condition appears due to a rare form of a gene (the interleukin-1 receptor antagonist gene) that regulates inflammation. He put me on Neurontin, Vioxx, etc...but they all gave me severe nightmares. Then a friend of the families daughter as diagnosed with the same thing by her Doc in florida, she looked up options and asked about the operation, no one would give it until she went to a female docter named, Dr.McNanny Flint who said the surgery was a VERY good option. She has had a 100% sucess rate with her patients, so my friend got it done. She is doing great now. When I wrote Dr.Leder explaining that I was desperate, sick of being sick, sick of not being able to go near my husband, of being scared of touching him, of being so sexually "scarred" that I couldn't stand evenhugging or kissing because I was terrified it would lead to "other things" and if I could please get the surgery, he said no. He said that the gene I had would only cause the damage from the surgery to become enflamed and would not help at all. What I don't understand is, if my friend can get it, and all of the other patients of this docter in florida can get it and be Great afterward...why can't I? They have the same thing right? Dr.Ledger wants me to go on yet another medication thta is some sort of blocker. I am scared to even tyr it because of the side effects, but I can't keep living like this. I have tried Suma as well at Dr.Ledgers request. You have to take this big pill three times a day with food. It obviously isn't covered by insurence and it is hard to find in Health food stores. I was also told that I shouldn't take it on a regular basis because it can be toxic to the body. It didn't help me when I took it. I noticed no improvment at all. I am going to try that docter in NJ and maybe the one doing the study on Vitamin B. I am at my wits end though.... If anyone knows of a support group in NJ that gathers some place please let me know. Thank you. Shaye
CommentShaye--how do you get tested for this gene? is it just a simple blood test?
CommentShaye-can you please tell what Neurntin did for you to have severe nigtmare.
CommentThey do mouth swab (like they do for paternity tests on the talk shows). They also take blood. I have taken Neurontin for a shoulder injury as well and have had bad results. From what I understand, anything that has to do with the nervous system can affect parts of your brain as well and cause the nightmares. (Don't qoute me on this) No docter has really confirmed why they cause nightmares....just that they do. I have had alot of trouble with meds and nightmares. Recently I have begun to suffer from hot flashes. My mother says I am WAY to young and it can't be..(I am 26)...I spoke to my docter about them and he was very concerned. I have a battery of tests done. I have a high white cell count, but he thinks that is because I was suffering allergies. Another thing I suffer from is constant blood in my urine. I have been to a uroligist who also did a ton of (very painful) tests, including a cathater whichj they inserted a camara in a tub to go to places I Never ever want anything to go to again, as well as X'Rays of my kidneys. They havn't found a reason for the blood. Does anyone else have this problem?..Blood in their urine? Is early menopause common in women with VV? Does the ammount of infections we get (yeast, bladder etc) have any perm affects on those parts?
CommentI did not post yet, but read every time .I have pain for 6 month. Most of my pain in outer libia . My skin there is very sensitive. When underwear tuch skin it's sturt very rubbing . And when i walk it's rubbing inside outer libia. I try different cream and outments ,but evrything make my condition worse. Maybe some one had same condition ? Please write me.
CommentShaye, I always have a little blood in my urine too. I have kidney stones that have been in my kidney for several years, so it could be from them. Some people with IC have blood in their urine. Also, anti-inflammatories can cause blood in the urine. My Urologist doesn't seem concerned about it b/c there's so little, but I'm sick of being told I have blood in my urine every year when I have my lab work done and then having to repeat a urine test. I did read somewhere that some women with Vulvodynia have blood in their urine, but I don't know what the reason is
CommentMiri - good to hear from you again. I, too, have much improved since a year ago. I finally took you and other's suggestion and treated my problem as a yeast problem. GSE, Calcium/Magnesium, Yeast-free diet for a couple months, Lo-Ox diet, EPO, and estrogen cream. I am so much better. Most of the time I feel nothing. After sex, I still feel a little irritated for about 1-2 days, but after that, I'm good. I'm SO thankful for all you ladies that helped me. I hope to help others with my comments. I know somethings work better for some than others, but I was in so much pain I would have tried anything (within reason, of course) Oh! And I used to rinse off urine with a squirt bottle all the time. Now I do not, but did for probably 9 months solid. That really seemed to help also. To the lady who asked about condoms and lubricants - I use lubricated condoms, but NOT spermicidal-- they burn me if I use them. ALso, Olive oil is a great lubricant. I put a little container beside my bed so it will be convenient when I need it :-) eh
CommentLori- The center I mentioned in Atlanta specializes in endometriosis, you are correct. I do not know if they would be able to help you with Vulvodynia. Have you looked into seeing Elizabeth Vleit? She is the author of "Screaming to Be Heard". She is in Texas, not too far from you. You might want to check out her website and contact her office. Good Luck! Margaret
CommentShaye Moon, Alot of women with low estrogen have Vulvar problems. Low estrogen also causes UTI's and dryness in your vagina. I would get your hormones tested. Are you on the pill? Doesn't matter how old you are, women of all ages came have hormone problems. If you are having hot flashes I can bet your problem is hormonal and a good estrogen cream applied on your vulva and even your uretha would probably give you some relief. When your estrogen is low is causes everything to dry up down there. Good Luck
CommentI just looked at Dr. Vliet's website and was shocked to see that she charges $3700 or more for the first visit. She doesn't take insurance either. Who the hell can afford that?
CommentSHAYE- I started having blood show in my urine last year. They have no clue why. My mom always has it too, we just dont worry about it as long as all tests are normal. My gyn said if you have even a hint of blood in your vagina, your urine can show blood. Pay attention to when you have your tests. If its close to your period, that can be the cause even if you havent started bleeding yet. My urine showed blood SO many tomes at my gyns office yet when I went to see a uro on the same week, there was no blood, 2 weeks later at my gyns office, more blood. Dont stress about it. Its probably nothing. Unless you have pain or something.
CommentTO ANON> WITH KIDNEY STONES- If you have kidney stones then that is more than likely what your vulvar pain is related to. Kidney stones usually show high in calcium oxalates. You need to be on a low oxalate diet. If you arent farmiliar with the Vulvar Pain Foundation, then look over their site. www.vulvarpainfoundation.org Oxalates form crystals that poke into the tissues and they can scrape the bladder and urinary tract as they are excreted, this in turn can cuase blood in your urine, and if you have IC too, then its probably from the oxalate crystals. Your cure is pretty much smacking you in the face dear. Go on a low oxalate diet and take calcium citrate with magnesium, adding some Ox-Absorb with each meal is good too.
CommentEsther I'm glad you're feeling better as well. i don't do the squirt bottle like you do, it's too hard with being at work. iI take a bath every night instead. the soaking really helps as well. I am having a little pain right now but i think its cause i ran out of the supplement i was taking. i guess it must be helping. if anyone is interested, it's a company called metagenics and the formula is called Fibroplex. you can only order it from a nutritionist or a holistic doctor i believe.
CommentMargaret - thanks for the info. Before you responded, I contacted the center in Atlanta to ask them if they could help with vulvodynia. A doctor actually e-mailed me back, and said they do not treat our condition, but he would try to find a doctor near my area that could. He said in the meantime to talk to Dr. Daniels in Nashville. I guess he was just referring me to Dr. Daniels because he knew him. I went to my doctor here in Nashville yesterday who is really trying to help me. He wants me to try Neurontin to see if that helps. He said that all my vulvar tissue looks healthy and normal, no irritation, no swelling, no redness, no yeast so he really believes it's the nerve endings. I've also been taking Lexapro for about 4 weeks now. I've withdrawn any type of cream, ointment, etc. I'm actually feeling a little bit better today for the first time in about 7 weeks. I've suffered with this for about 14 years off and on. Last night I did "Hot Yoga", and for about an hour and a half, I completely forgot about my pain. I felt really great when I left there, slept like a rock, and today my attitude and mood seems to be a lot better. I still feel some discomfort, but nothing compared to what I've been feeling. I have not started the Neurontin yet, but I'm getting it filled today. Thanks to all you ladies who contribute to this site - I read about you all every day.
Commenthello. ive just discovered this guestbook and i just want to say its really helpful to hear im not the only person with problems like this! im 21 and found out a while ago i have vulval vestubulitis after a lot being told i had thrush and me thinking the problem was all in my mind. my boyfriend who was really great about it for over a year eventually broke up with me as it had affected our relationship to a point where we were past trying. i felt heartbroken at the time and so mad. i cudnt blame him as he`d been so supposrtive for so long but at the same time i was really angry to have lost such a great person because of this problem which i dont appear to be able to do anything about. i`d just been disgnosed when we broke up so i`d only had a short while on anti-depressants, so i dont know if that would have worked. now my gynacologist just says to go back to her when im in a relationship. but its a catch 22 situation,. how can i get a relationship started with this problem! especially as i think its king of affected how much the problem has put me off sex. but i cant figure out how to cure it until im in a relationship! i`ve cheered up lately but i still wonder about how this problem will affect my relationships in the future. its just a comfort to hear other people have had problems like me. thanks!
CommentAmy, I had that problem too. I was 22 when I broke up with the boyfriend though and at that point I had been through so much that I gave up. I figured I could live alone forever. It was definitely an extreme low. (And the only low I ever had in 5 years which I guess is pretty good). Anyway, my specialist encouraged me to stick with treatment for the exact reason you're saying - What happens when you get into another relationship? I refused and I later regret it. Do you have pain with sex only? Can you cause the pain with a finger? If you can, I'd keep trying and use that as your judge. Find a vulvar pain specialist (they are scarce, but it will be your best move). I think they would want to continue treatment. I always judged my pain and response to treatment by my visits to the doctor. I can't think of the name of it, but you know the thing they use for the exam that looks like a duck bill. That KILLED, but didn't after a while with neurontin and PT. The sad part for me is that with years of treatment I couldn't stop the fissuring, so I had a perineoplasty 2 weeks ago. Has anyone out there had one? I wonder how it turned out for others. I'm nervous and curious, thus the reason I'm seeking help on-line. I'm suprised I never did before.
CommentI just got married in September to my longtime boyfriend, but I told him Before we got married, it was ok if he didn't want to. We have had problems with sex for years and I know it is affecting him alot. He said it didn't matter to him because he loves me, so we got married. Now I am regretting it. He doesn't understand how much it hurts, he doesn't understand that I just don't get turned on anymore, not by Anything. When Sex, is so painful for so many years...7 told for me...it's like you get desenatized to "wanton" feelings....I am not sexually attracted to anyone. Him, movie stars..models...No one. I don't feel anything...I don't get tingles...I don't get those ":Mmmm hummm baby he is HOT" thoughts anymore. I Can't even hug or kiss with any emotion..and it isn't for lack of trying..but I feel like I am forcing myself to wrap my arms around him to hug him..and the only feeling I get when I do it is sick and scared... How do you recover?...How do you get that drive and want back?....Is it always going to be like this...I don't want to be dead to things that other people love so much. It isn't fair.
CommentShaye-I have been married for 14 years and am experiencing that same sense of lack of sexual drive. My vulva feels and looks great but I still struggle with getting into sex. Once I am there I do great, but getting there is all the battle. Don't give up! I decided to see a therapist who specializes in sexual disfunction. I have been once and I talked about my history. I agree, I believe years of painful sex or fear of painful sex can squish the labido of any hot blooded women. Believe that there is information to help you. Don't stop talking to your partner. Go and seek counsling before the silent void between you grows stronger. I am working on this myself, so know that you are not alone. I know I need to put tons of effort into changing my sexual response pattern to see a change. For me, sex it is mostly pyschological. It is my state of mind that moves me through the sexual response cycle. Talk with your partner about seeing someone! Good luck and Take care Margaret!
CommentSusan - just wondering how you are doing since seeing Monica Peacock and wondering what the Vitamin D theory is all about...please let us all know...
CommentThis is my first time writing int he guestbook. I have been reading alot of the entries and have found that many suffer the same problem as me. I have been getting recurrent yeast infections for the past few years. Doctors always confirm my self-diagnosis, prescribe me a cream or a pill, then send me on my way. The medication usually gives me relief, but the infections always come back. I always have some sort of irritation in my vaginal area. It's usually just a mild itch, or irritation, but sometimes my whole vagina just feels out of balance: almost as if it's too acidy or the ph is off or something. My doctor says that it's normal for some women to experience irritation from time to time, and that I probably just have sensitive skin (which I do: I have excema all on my torso). When I scratch the area, the skin sometimes breaks, leaving a tear. I'm constantly thinking about my vagina, worrying that it may be some other type of infection. I've never had an std ( that I know off), nor have I ever developed any sores in the genital area. I just seem to be prone to many yeast infections and all together irritation. Can anyone relate to what I'm going through? If yes, do you have any suggestions on how I could live a normal active life while living with this condition? Any answers would be appreciated. Thank you.
CommentCaryn, I was misdiagnosed and unsuccessfully treated with yeast infections a million times before I was diagnosed with VIN (vulvar intraepithelial neoplasia). Basically, it's skin cancer on your vulva (the outside skin) versus what is more common, which you may have heard of that women get this on their cervix (CIN). CIN is easily diagnosed because we get our pap smears every year. It is more and more common that women get this on their vulva and are misdiagnosed because there is no yearly test for it and it is fairly new in terms of frequency. I was persistent and the sixth doctor I saw realized I never had yeast issues and did a biopsy and that is how they found it. It sounds horrible, but I got through it all. Clearly doctors don't think of VIN often, because it's not written any of my records from the first 5 doctors I saw and the extent to which I had it suggested I had it for years. Ask about it. It can't hurt. A biopsy would even show if you had eczema down there and maybe a topical steroid would treat it. If you are prescribed a steroid for the area, that's OK, but make sure you're followed by a vulvar specialist. If truly you do have straight up yeast problems and this is the root of your vestibulitis, I've heard women who take a weekly Diflucan pill that have done really well. Maybe ask about that too.
CommentStacy-Wow. That's what happened to me, too. I had VIN and was treated for yeast for years before a Dr.diagnosed the VIN on the first visit. I ended up having surgery on my labia, both sides, complete with stitches. After I healed, I was fine for about 2 years and then the itching came back. I thought the precancerous cells had come back and I'd have to endure surgery again. After a few more biopsies turned out negative for VIN, they were positive for chronic dermatitis and the rounds and rounds of topicals began in the hopes to relive the itching, constant burning and then nerve pains that worsened , unfortunately with time. Compound this with even more biopsies and I thought I wasn't going to make it through this. I was given, as a last resort, alcohol blocks and steroid injections and then started on antidepressants. Vulvodynia in 2000 was unheard of. In my case, it is thought that the trauma of surgery to remove the precancerous cells and the use of so many topical solutions and yeast meds caused me to develop nerve damage. In August I'll have been taking Norpramin for about 5 years. For the most part, I've had little to complain about. Every now and then I have a bout to work through, but nothing like the old days. This past winter I had 5 yeast infections due to 5 doses of antibiotics and I struggled a bit with irritation and redness, also thinning and tearing of the inner labia. I have 2 weeks of Estrace to go. I will have used it topically for 11 weeks. I am feeling fine and I continue to take the anti depressant and have minimal nerve pains. Hope-the Oh Joy lubricant has arrived, but my husband is on a mission and so I haven't tested it out yet. Ladies-hang on out there. Eventually you will find something that works for your body. Best wishes.
CommentOops. In August I will have been on the antidepressant for 3 years, not 5.
CommentJennifer, I just have to say that you and I have had almost exact experiences. I've been nerve pain free now for a year and a half, not 3, on Neurontin though, not Norpramin. Unfortunately for me, that cracking in the skin you were talking about got me. It slowly got worse, so that I had a new pain, a pain due to non-healing cracks in my skin. As I wrote earlier, it got to the point that I had a perineoplasty a few weeks ago. I successfully weaned off my Neurontin just before my surgery, so there is hope for us all. I'm glad I heard your story. Thanks for writing.
CommentHi, Im 19 years old from Stranraer in Scotland. I have had vulvar pain for the last 4 months, I haven't been able to enjoy full on sexual intercourse with my boyfriend due to severe pain on entry. I am currently waiting for a referral to a gynaecologist. However, it seems my symptoms match those of VV down to a T. However, after every time i (try to) have sex, my boyfriend has alot of blood on him after he withdraws from me. Always in the same place, as though I have a cut inside me. It causes alot of pain and burning straight after sex but I experience no symptoms at any other time. I only experience the pain, blood and burning after sex. Im kinda worried, for obvious reasons as the thought of this pain staying with me indefinately is terrifying. I know its wrong to self diagnose myself but Im a born worrier. Im hoping some of you might be able to shed some light on the situation for me. It seems to have developed ever since I got a cut on my perineum. The cut took ages to heal and ever since then my pain during intercouse has become alot worse. Please help.
CommentDoes anyone take AZO yeast tablets? I have been trying to find them in the stores without much luck. Since they are new they seem to be really darn popular. I am determined to find them, when I do I will post my results.
Commentto Jennifer .Can you please tell me what kind of nerve pain did you have .Was your skin hypersensitive? I am thinking that i have nerve pain my outer libia, so my skin very semsitive .I can't wear underwear because any friction with skin let me pain. Thank you very much!
CommentHi, I have been suffering for about 6 years now with no luck with treatments. Went to see Dr. Glazier/Rodke years ago who just referred me to a urologist for that part of the pain. Anyway, the first part of my question is with my usual gross discharge when I ovulate, I have a very foul odor. I went and got cultured 3 x and they all came back negative. Anyone heard of that? I can't tell if I have an infection because I'm always sore anyway,. The second thing is now I have some purple patches down there. Not raised, flat and they don't hurt or itch. Mr. Dr. wants to do a biopsy, but if it's part of vulvodynia, I don't want to go through that pain. Can't be vd, I've been with my hubby since I'm 15 and we were both virgins!!! Any help will be greatly appreciated, sorry to sound short, I'm just so frustrated............................. Patti
CommentStacy...Thanks so much for your info. I'll definitely bring it up with my doctor next visit.
CommentShany-As I mentioned before, I had surgery on my labia to remove precancerous cells. I healed and was well for 2 years. One day I woke up and my vulva was very red. Then it started to itch and became more inflamed. It was dismissed as yeast. I tried a few yeast treatments, but they did not work,yet I was given more. I could not wear underwear or pants for a year. I could hardly sit. The car was the worst. My own fluids irritated the skin. I kept trying various creams and ointments but they didn't help either. I used petroleum jelly to help soothe the area, as well as lidocaine and ice packs. My doctor kept doing biopsies all over my vulva, but kept specific focus on the 7 o'clock position right outside the entrance to the vagina. After a year of various treatments is when I had the alcohol blocks and steroid shots to the labia. I used nothing but petroleum jelly. Within about 2 more months, my vulva returned to it's correct color and the labia did not itch or burn, yet I had what I call nerve pains. The only way I can describe it is like when you have a bad headache and you can feel the nerve at your temple throb. I was having throbbing nerve pains at the entrance to my vagina that would stop me in my tracks. This nerve pain is totally different from itching or irritation. To me, the nerves were much deeper then the surface nerves associated with the irritation. These pains were where the Dr. kept repeating biopsies. I didn't have these bad nerve pains on my labia, just right outside the vagina and on the insides of the vagina. And I didn't have these nerve pains the whole time I was trying to be diagnosed. It was when all of the skin irritation died down that I had the chance to feel them and I could seperate the difference between them. My story is in the 22nd guestbook around the 7th or 9th of July, 2004. Now that I have been on the Norpramin for 3 years, the nerve pains are pretty much quiet, although sometimes they do flare up just a bit about 10 days before I menstruate. Nothing constant but it lets me know my period is coming. Try to keep track of patterns. The pains were always worse before my period. Also, I don't know what it was in the end that stopped the skin irritation. I don't know if it was the shots, or a combo of the shots, low oxalate diet and stopping the use of all anti inflammatory creams. In my case, though, I believe that one cream after another only prolonged my suffering. I think my body was overloaded with creams so that my skin never had the chance to see if it could help itself. Just my opinion. Good luck and hang in there.
CommentCARYN - I'd trust the Dr. If they don't think it's part of VV then you should get the biopsy. Try to be brave and know you may be saving yourself pain in the future. Good luck!
CommentHas anyone else had problems with swollen bartholin's glands (the glands on either side of the vaginal opening)? My are so swollen and sore. Will the go back down eventually? Will I need to have them drained or removed? i would hate to have to have them removed. help!!
CommentAngela, I would only suggest finding a vulvar pain specialist. I already had one when this started, but each time I saw a regular doctor with tears, they'd scratch their heads. I'd have to explain the whole thing. I don't know any in Scotland, so I can't help there. My perineum would tear when I had sex and then I couldn't touch it for a week or more. It took forever to heal everytime. Obviously I don' t know why you tear, but I did because of VV. First I tried topical meds to strengthen the area to stop it from tearing, and that didn't work, although it has for others. I ended up having surgery to cover the area with a stronger skin. I can't tell you how it went yet. I'm still home, laid up, in recovery. I can let you know if you're interested. Just know, you'll get through it.
CommentOh, and Angela, after a while, the tears didn't hurt. Guess I got used to it, but obiously needed to have it fixed, you know. When you're ready to try again, try different positions and lube. Any position that puts the least pressure on that spot that tears. I mastered a few. I was able to go weeks without tearing. Just be careful and try not to let it get you emotionally. That's the hardest part.
CommentTo Jennifer: Thank you very much for your reply. I would like to tell a little bit about my story. It started 7month ago. I started feeling dryness and burning around my vaginal opening. My urina also burned my skin. So like a lot of women I came to the doctor and he gave me cream and Defucan .I tried it, but it didn't help. Only my skin became more dry. My family doctor prescribed me antibiotic for infection that I did not have and my outer libia became very red,so I took 3 more pills of defucan ,and after that my skin got very sensitive . It didn't look very red, just a little, but hurt a lot when I walk because it's rubbing bettwing outer libia . Also I have nerve pain in the area of outer libia too. I tryed petroleum jelly too, but it was burning my skin. Even plain oil burns my skin . I really don't know what to do to remove sensitivity from my skin.When I have my period I can't move because pads rubbing my skin a lot. i
CommentPatti, I have had discoloration down there as well if I can recall, and I do believe they were dark purple patches...like a blood blister only flat. I believe the docter said it was bruises from riding my bike, I also ride horses. If you ride your bike alot you may want to try a new bike seat. Eventually the dark patches went away. <br>I have had Alot wrong with my labia. The first time I went tot he docter with a serious infection, he actually had to stick needles in the skin and drain it...That was an absolutly horrible experiance. I was alone and scared to death, but the infection was making me sick all over so it had to be done. I felt better afterward. I started on Azo Yeast pills, will let everyone know how it goes.
CommentI can't think of anything I may have done to bruise that area. I can't ride a bike, hurts too much. I guess I'll have to go through with the biopsy. Let us know how those pills work and where to get them if they do. Good luck and thanks for the reply!!
CommentPATTI- Ive had VV for 3 years now and had 2 biopsies on the same day directly across form one another. IT did hurt pretty badly the first 2 days, but they heal really quickly. Get some Tylenol 3 prescribed for you and sleep through the pain. I was so glad I had it done. Mine came back that I just had severe inflammation (WELL< DUH!!!) But you want to know whats going on. My biopsy areas were also large. They probably wont take as much skin from you which means they wont hurt much, maybe just be uncomfortable. Its worth it.
CommentHi, I mentioned botox injections last month, well I spoke to my specialist and he does these injections so last week I was operated on and had the botox injections to the pelvic floor muscles. I am not sure if they have helped yet but if they are successful I will have to have them every six months . I will keep you posted.
CommentThanks Stacy, for your reply. It really helps to talk to people in my position. Tried intercourse again in the last few days, only for it to produce ALOT of blood and pain. I have got my appointment for my specialist on the 15th June so fingers crossed. It is having such a huge impact on my life. Its probably worse knowing I can't please my boyfriend properly, than actually having pain itself. My email address is flowerinthewindow@hotmail.com if anyone is available to talk about this problem... Thanks again Stacy for your helpful post. :-) I am ever hopeful that there is a cure.
CommentCan anyone share with me their experience if they have had flash pump dye laser surgery to their vulva or if they know of anyone who has had this surgery. Please feel free to email me or leave a message on this site. Look forward to hearing from you.
CommentOzchick- I have heard women talk about their experiences with this procedure on Vulvar Disorders Discussion Groups on Yahoo. You might want to join their group and ask. Good luck! Margaret
CommentI don't know what is happening to me, and I don't know what to do. It all started when I woke up in the middle of the night with a god-awful bladder infection. It was so bad that I went to the ER (it was on a weekend) and was put on the antibiotic Cipro. (Subsequently, I discovered this is the antibiotic typically used to treat Anthrax.) A week after completing my course of antibiotics I started having yeast infection symptoms. I'd had yeast infections before, and they had always responded to over the counter creams, so I used a seven-day treatment. The symptoms did not go away this time. I saw my obgyn and he said it sounded like and looked like yeast. He put me on one Diflucan. The symptoms did not go away. I went back, he did a culture, and put me on a course of 3 Diflucan to be taken every other day. Again, the symptoms did not go away. In the middle of this I got married and went on my honeymoon. The honeymoon was awful because I was in pain and discomfort, and we did not have sex. When I returned home I received a letter in the mail from my obgyn that stated nothing abnormal had been found in my culture. Did I take the Diflucan for nothing? I started using tea tree oil suppositories for about two weeks, sometimes twice a day. My symptoms subsided but the tea tree oil caused a different kind of burning. After stopping the tea tree oil, my symptoms came back and I began noticing that I had a white discharge as well. Since then I have been tested for everything under the sun - and all have come back negative. I do have HPV, however, and have had it for at least six years. Back in 2001, I had a cone biopsy to treat cervical dysplasia. After the surgery, I've had paps every six months and they've always been normal. My last one was in March of this year and it too was normal. My fear is that the HPV has flared up again, and that the vulva pain and redness I am experiencing could be some kind of cancer... (?) Anyway, everytime I go back to the obgyn he does the same thing: takes a culture. And then it comes back normal. I'm in a lot of pain. I'm a newlywed who hasn't had sex with her husband. I have red patches on my labia that are raw and sore to the touch. I don't understand what is going on. Is it yeast? HPV? Something else? Anyone out there have any insight into my situation? Thanks in advance.
CommentP.S. This has been going on for four months now.
CommentJen, I'm so sorry for what you've been going through. It doesn't sound like your current Dr. knows how to help. Have you tried to find a vulvar pain specialist? I know it's hard to find a good Dr. b/c I'm having that problem myself. What state are you in? Did you check the list of Drs. on this site or others?
CommentJen- I have HPV also and have had it for 6 years. My issues began very similar to yours. I took anti-biotics for a bladder infection after some surgery. I develop yeast infections that would not go away. After a year and a half of using maintance doses of diflucan and creams I found this website. You are going to find information here that your MD may dispute, but this information is great. Women on this guestbook have seen thousands of MD with sometimes no relief. Be open to diet changes and unconventional approaches to this illness. I just lost a long entry that I wrote to you detailing what has worked for me. I don't have time to re-type it, but my story and entries began back in last summer of last year. I saw a specialist in California in December who finally helped me. I have shared my story over the past months, detailing my treamtent and success. I would suggest you read back and if you would like to contact me personally to find out more please do, margaretmelkins@msn.com. I will try to share more info next time I am on-line! Believe there is information that can help you. Take care Margaret
CommentJen-I, too have HPV. You might want to suggest to your Dr. to have a biopsy done or atleast a vulvar colposcopy if you don't have them done already. From what I understand, one can have the virus and it can make areas succeptible to skin changes. For me, the labia was compromised, for you your cervix. Don't quote me, but I was lead to believe that there are a few different strains. Most common is the one that attacks the cervix. After I had surgery on the labia, I was fine for a few years and then the itching started again. I too thought that the precancerous cells had come back.My strain isn't as common. I was also told that once one has a surgery to remove these cells,there is only a 20% chance of them coming back. I took cod liver oil tabs and folic acid for years because this was supposed to help decrease the chances for any more unusual growth. You say you keep having cultures done, but cultures won't tell you some of things that a biopsy or vulvar colpo can tell you. I wish you luck in finding your answers. HOPE-I tried the Oh Joy lubricant. I was glad that it didn't irritate me. My husband liked it too. It has a nice texture and is all natural if any one is looking for a lubricant.
CommentI have vulvodynia and atrophic vaginitis. Prior to these diagnoses, I was treated for vaginal and bacterial infections for many months with all sorts of medications and suppositories. I am now on 1000mg of neurontin and it has helped quite a bit as well as vagifem. However, I have had a setback that I cannot figure out. My husband and I used a lubricated condom a month ago because I though the chronic strep B I have could be a problem for us. (I later was told that this is not a problem!) We had no problem using the condom. But, the next day and the days after that, I got worse and worse itching and burning. I saw my gynecologist and he said I had a yeast infection and he put me on boric acid 600mg twice a day for 2 weeks. I then found out that the yeast culture was negative! I was told to stay on the boric acid for the remaining 2 weeks, so I did. After stopping it. my vulvodynia is much worse. I burn all the time. The yogurt and vagimen now hurt when inserted and they never used to. (I have had almost no good lactobacilli for almost a year.) I am very confused. Could the lubricated condom cause the problem initially? Could the boric acid have burned me? I'm afraid that I have caused irreversible damage to the vulvar area, just when I was starting to get under fairly good control of the vulvodynia. I'd prefer to have email responses sent to me personally but posting on this site is OK, too. Thanks to you all and let's all keep our chins up, as hard as it sometimes is to do.
CommentDoes anyone know if the HPV vaccine will help the women with HPV. It's estimated 50% of women by age 23 or so have some strain of the virus. This vaccine is scheduled to come out next year. If you have the virus, I don't believe the vaccine will do anything for you, but is someone working on it somewhere. It's the root of many vulvar problems. I wonder how many women's vulvar problems would stop progressing if they could get rid of their HPV.
CommentTo J...I had a Bartholin's cyst and had it removed. It wasn't too bad. I still have one Bartholin's gland left.
CommentTO Stacy...You said you had the perinealplasty and stronger skin was put where you would tear. Do you know where the new skin came from? Was it yours and they just rearranged the skin down there, or was it donor skin? Exactly where did you keep having these tears? I will be curious to see if this help you, so please keep us posted. I have the same problem and the Dr wants to totally remove all the skin in the vaginal area and replace it. Don't know where he wants to get all that skin from. Not sure I want to do it. All the surgeries I have had in the past like what you had just increased the pain and I got more tears. Keep me posted.
Commentdoes anyone know of a good Dr. in the New Orleans area?
CommentTo Jen, Are you on the pill? Have you had your hormones tested? Lots of hormone problems cause burning and dry skin.
CommentFYI, Dr Jessica Thomason in Milwaukee is wonderful as others here have said, but she is retiring in September, and I believe she is not taking any new patients.
CommentI am 33 and was diagnosed with Interstitial cystitis at around age 6. I have had periods of severe pain and periods of remission throughout my life. About 3 years ago, I also developed vestibulitis. I had a period of about 1.5 years pain free but a recent bladder/yeast/bacterial infection followed by rounds of antibiotics, yeast meds, steroids etc have caused both my IC and vestibulitis to become symptomatic again. I now also have white patches of skin at the opening of the vagina. They are considering biopsies as all cultures for STD's, yeast, bacteria are negative. I'm looking for a good Doc in New Orleans and am also wondering if anyone else has found a substitue for clobetasol cream, it is much too irritating to my tissue. Also, has anyone tried the aloe tablets? Thanks for any help. Just reading the other postings make me feel less isolated and less self conscious about my problems.
CommentHi Liz, I'm curious how this is going to turn out too. So far, it seems like no recent readers have gone through it. I will definitely keep you posted. By private email even, if you like. I only went through with it, because I have an incredible confidence in my doctor. Otherwise, I wouldn't have. I sometimes feel the more I try to help my problem, the worse it gets. My doctor has always kept me positive and listened to me and I believed her that this was what was best considering nothing else would stop this tearing. I tear at the 6 o'clock spot only. Basically, she cut out the layer of skin in that spot and then pulled skin from up above it (which yes is my skin inside me) down over the area. The recovery so far has been suprisingly smooth. I took Neurontin for my nerve pain for years and weaned off that just before my surgery just by chance of timing. I kept thinking for sure without the neurontin, having stitches/surgery there would kill me, but the pain has been very little. Obviously, every situtation is different, but if it works for me, hopefully it will work for you.
CommentJen - I've posted here several times, but your post brought tears to my eyes and I had to respond! It reminded me of what happened to me about 18 months ago. I had two UTI's within 6 months (after not having any for 5 years) and was treated with antibiotics. I was under tremendous stress since I found out I had a tumor in my liver and they didn't know if it was cancer, and was going through lots of different scans to try and figure out. Then one morning, I just woke up with BOOM - this horrible burning pain, redness and rawness in my vulva area and cliterous. After finding this site and reading for months, I decided to treat it as a yeast problem (I had tested negative for yeast, but... only vaginal swabs had been done, no vulvar swabs). I did the lo-oxalate diet, Calcium-Citrate with Magnesium (in case it was a oxalate problem), Yeast free diet and finally the thing that helped the most: Grapefruit seed extract. That is a potent anti-fungal that, if taken consistently, helps any yeast problem go away. I started to feel better almost immediately. I had also used Clabetasol, which helped the inflammation a little, but had no long-lasting effect. Estrogen cream DID help, though and I used it for about 4 months twice/day. It helps thicken the skin when it's been thinned out due to steriod creams, etc. So, I'm much,much better. Lots of ladies here have their own stories, and the fact that you have HPV is a different twist. I had a biopsy done when I was at my most painful point, and I almost killed that doctor it hurt so much! It turned out to be nothing... just inflammation. It is very scary though, I know. I thought I might have some kind of cancer too. It's amazing, though, how much a yeast infection that isn't treated can hurt your skin... plus some of the treatments we use can too. The creams and such. I also take Vitamin E (topically). It is great for your skin (facial and otherwise). I will probably take the GSE forever.... it is a great anti-fungal and anti-bacterial, so it keeps you healthy, I think. If you do take it for a long time, you should take a pro-biotic, just in case it does kill some of your healthy bacteria. Hope this helps. If you have any further questions, email me at dhurst@dhurst.com. I'll be glad to help any way I can. This can be just horrible, I know. I suffered for months before I got any relief. I thought I would lose my mind, but thank God some ladies on this site gave me great suggestions and some of the worked! hugs - eh
CommentI am curious, has anyone had any luck being on topamax? I was on Neurontin with no luck and then switched to Trileptal which made my white blood count very low. My main symptoms are rawness, stinging and redness in the mons area. Thx for any help!
CommentDon't know how many men have posted here, but hello! My wife had been struggling for about three years with recurring "yeast infections." Finally -- she was diagnosed with V.V. She works and I don't, so I do all the research regarding this -- and let's not forget -- I have a vested interest in finding something that works. First question -- Are there any other men out there that have symptoms? Rash at first, then eventually little red sores (no pain) that dissappear in about a week. EVERY doctor I talk to has blown me off! I am not supposed to get any signs of the problem since I am circ'd. Next: Is there an agency that collects data regarding the women with V.V.? My wife has some unique history: -abortion 20 yrs ago -sarcoidosis (very mild form) -campylobacter infection (3 yrs ago) -TMJ for years -Numerous yeast infections Are these common things with woment having V.V.? Anyone know of a specific web site for the husbands of women with v.v.? Many thanks! JB
CommentHi, does anyone have a name of a doctor that has a clue in Northern New Jersey? Thanks!!
CommentHi again, where do you find the grapefruit seed extract and is it liquid or pills and what mg work and how often do you take it? I looked in my health food stores locally and no one carries it. Thanks again!
CommentMargaret, Jennifer, Esther - Thank you so much for your responses. This problem affects one's psychology to such a great extent. It really helps to have the support of other women. I have felt so alone and afraid, and my new husband doesn't quite understand the stress involved in this. Since reading your responses I have convinced my OBGYN to do vulvar biopsy, even though he tried to insist that HPV only affects the cervix. I do that next week Wednesday... I've also found someone at Cedars Sinai (Los Angeles) who is a vulvar specialist, so I will be seeing her in the next two weeks also. An aside: has anyone experienced the onset of this problem to coincide with emotional trauma or great stress? If yes, do you believe this is merely coincidental or do you feel there is a real connection? Thanks again. I really appreciate connecting here. -Jen
CommentJB-I did have the same symptoms that you have but the frequency has diminished some. I had some irritated areas on the shaft of my penis that were red, kind of blotchy with no specific circumference to speak of. It transitioned to a dry patch about the same surface area. We started using condoms to alleviate it, as well as the associated discomfort of my wife. It may be the flora imbalance in her when your ejaculate is mixed, but yeast is the probable culprit. Mine went away after about a day or so, which meant that a doctor visit was not in the cards for me. Dr Metzger thought that it was surface yeast as well. My Doc said that it could not be yeast ( I am circumcised as well) on the shaft. Yeast normally grows on men in the anus, around the testicles (under) and in the head of uncircumcised penis'. My wife treated the yeast with Argentyn 23 (purified collidial silver) and used acidophillus suppositories (vaginally) and it stopped any problems for me. Hope this helps and best of luck.
CommentJen- I mentioned I have HPV also. I have had biospies and they haven't offered any new information except that I have chronic inflammation. Also if you liev in California you may want to check out Dr. Metzger's website. She is in Los Altos, right by Stanford. www.harmonywomenshealth.com You are welcome to e-mail to me, she was the doc who finally helped me. Good luck Margaret
CommentKeith -- Thanks for the info. Sounds exactly like what I have been dealing with. In my wif'e case, I think the yeast theory best fits. Onset of frequent yeast came right after a campylobactor infection (think nasty food poison from chicken). Anyone else?
CommentMy VV started after a yeast infection that went out of control 2 yrs ago. I tried a ton of over-the-counter products & antibiotics prescribed by several doctors. Long story like most of us. Jen - you mentioned stress. Coincidentally, I was under a ton of stress w/ My Dad's cancer, new job/new location. My job is very stressful too. So - i have no idea if that is a contributing factor. My VV worsens when sitting (which is all day). Currently on 900 mg of Neurontin, Clobasol for inflamation, acidophillus vitamins, and daily soaks w/ Epsom salt and baking soda. I'm starting PT in June for Pelvic floor. I have NO IDEA why sitting sparks the inflammation - is it yeast? I do know that epsom salt baths really help and when I wake up I feel great.
CommentGrapefruit seed extract - I only could find this in diet pills and not in any vitamin pill form. I found Grapeseed. The pharmacist had no idea about the Grapefruit seed except in the diet pill.
CommentHi, just to bump this post, I am looking for a doctor in Northern NJ who know about this illness. Anyone using one? Also, where do I get and how do I use the grapefruit seed extract? I can not find it locally and when I looked on the net it said it was liquid and pill form and different mgs..... Thanks!!!
CommentMost of the posts here indicate that the pain from V V is constant if not continuous. Can anyone confirm this? Are there cases where the pain is VERY intermittant? Thanks!
CommentJB - my pain is not constant. and i do typically have one good day during a given week.
CommentWell, I went to see Dr.John Marcus today. He is a really nice Docter, he spent a good long time interviewing me, then doing an examine. Seems Dr.Ledger might be wrong about his diagnoses of VV. Dr.Marcus did the test again and it turned out negative. He however does think he may know whats wrong with me. He thinks I might have Endometriosis. I am Scared out of my mind. Endometriosis causes infertility. He has prescribed a battery of tests that I have to go through to find out. If you haven't been diagnosed, or if your teratment isn't working. Check out the site on Endometriosis and see if your symptoms match. I will let everyone know what happens.
CommentShaye- I have sufferd with Endometriosis since I was 12 years old, I am now 36. I was able to conceive two children. I would recommend reading "Endometriosis, The Complete Reference for Taking Charge of Your Health", by Mary Lou Ballweg and the Endometriosis Association. You can purchase it at Barnes N. Noble. If you would like to e-mail me I woud be happy to help you with this new possible diagnosis. You are not destine to be infertile. There is lots of helpful information and treatments available. I belong to the Endometriosis Assosication and I am in the process of becoming the local support group leader for Idaho. Please feel free to contact me. margaretmelkins@msn.com
CommentHi Shaye - I go to Dr. Marcus too and am the one who referred him to women on this site. I have vv. I'm curious...how did Dr. Marcus test you for vv...what did he do, the q-tip test, or something else? He is a very nice man and takes the time to talk, etc. Don't get crazy right now until you have all of your tests back. He told me I may be going through early meno and I was hysterical until I got the results back. That only causes more stress, etc. which makes these types of problems worse. Wait until all of your tests come back. Keep us posted on your results...
CommentHi Shaye - I go to Dr. Marcus too and am the one who referred him to women on this site. I have vv. I'm curious...how did Dr. Marcus test you for vv...what did he do, the q-tip test, or something else? He is a very nice man and takes the time to talk, etc. Don't get crazy right now until you have all of your tests back. He told me I may be going through early meno and I was hysterical until I got the results back. That only causes more stress, etc. which makes these types of problems worse. Wait until all of your tests come back. Keep us posted on your results...
CommentDear sweet ladies, Thats what we are. We are mothers , lovers, sisters & aunts. NO WOMAN should have to suffer with this type of pain. I have been reading these guestbooks since January 05. I was a 43 year old healthy, sexually active ( isn't sex great) woman. Christmas Eve I had a bad sore throat & ears. I went to the doctor ( I only go to a doctor about 1 time every three years) They gave me an antibiotic- AUGUMENTON . I then aquired a yeast infection ( I've only had 3 in my life time( all from antibiotics) anyway the last 2 times I treated myself with Monistat1. This time the Monistat did not work. I then went back to the doctor and he gave me Difucan, still not better. He then gave me 2 difucan to no avail. Then I was given Metrogel ( because they didn't no what was wrong) I have been to the doctor 18 times this year to deal with this HORRIFIC PAIN..yes the yeast infection was gone but I was in PAIN .Sitting hurted the most. I did not have a problem with sex. I still had great orgasms ect...but it hurt afterwards every minute of the day that I was awake. To the doctors eye my vagina looked healthy....But I was in pain...Sitting was the worst. Then I went to a different OBGYN he gave me steroids to rub in the opening of the vagina , I was in more pain ( you're going to love this) On the Mayo clinic website , the # 1 thing not do use is a steroid lotion.....Doesn't that take the cake. The point of this is WE ALL NEED TO GO TO EDUCATED DOCTORS that are following VULVADYNIA= BURNING VULVA. I then went to another OBYGN, after desperation I agreed to try ELAVIL. It takes about 6 to 8 weeks to get into your system. After 8 weeks of 25 mg 1 time a day I now am feeling great for 1 week NO PAIN AT ALL. yes you can gain wait because one of the side effects is a sweet tooth. LADIES we have control over this it's called EXERCISE ( just a fast paced walk 3 times a week for 1/2 hour) IT"S ALOT BETTER THAN PAIN. WE NEED to TELL EVERY WOMAN that we know to be careful when taking an antibiotic. They need to eat yogurt during this time. Also I Believe that I ended up with this nerve damage because having sexual intercourse to SOON after taking the Monistat...DON"T HAVE SEX FOR 5 days after using this ( Monistat say after 24 hours) . All I can share with you is this, I had intercourse 2 days after Monistat and thats when my pain started , it was a burning that I had never felt before and I went down hill from there. I am WARNING ALL HEALTHY WOMEN who don't have other problems. I WISH ALL OF YOU THE BEST OF LUCK. I want to THANK everyone that has posted on this sight because it educated me through your experiences. DEB from PA
CommentHi Everybody. I have posted several times before. I have had this problem for about 12 years and have been living in Mexico for the past 4 years, where there are no vulvodynia specialists. I've realized I must come to the US this summer to see a good doctor, and I'm trying to figure out who the best doctor would be. I had gotten Dr Jessica Thomason's name from this site (thank you!) but then learned that she's retiring and not taking new patients. Other names I've found are Dr. Paul Nyirjesy in Philadelphia, Dr. John Marcus in New Jersey, and Dr. Andrew Goldstein in Maryland. I've also heard that there's a vulvodynia clinic in UCLA. I'd like to know people's experiences with these doctors so I can make the best choice, since I'll only be able to go once. Thank you very much, and thank you to those in the past who gave me these names.
CommentI went to see Dr.Marcus on Thursday, he didn't use a q tip test for me, he just felt around with his fingers, but mostly he checked my abdomen and lower pelvic under my belly button. Anyway, on Friday I was in a great deal of cramping pain, so I called him as asked if there was something I could take. He told me to go to the ER at Valley Hospital immdiatly. I went and had all of the tests (which I was supposed to get next week) done right away...including a Cat scan, and internal pelic ultrasound as well as blood work. Everything came up negative but I was still in pain. He came in to see me that night and told me he wanted me to stay for a Laperoscipy (my spelling is horrid on most of this stuff)...basically they cut in your belly button and at your pubic hairline and stick a camara in to look around. What he found was not good. I have stage 3 Endomitriosis. Dr.Marcus says it is very severe. He vaproized what he could see and clsoed me bck up. Now I want to THANK Laura for posting Dr.Marcus's phone number and address...if I hadn't found him I may have never been dignosed, and I may have never had the chance to have children. As it stands right now, because we caught it before it could spread I am NOT infertile. If it wasn't for these message boards and you giving out the name of our Wonderful docter, the endometirosis would have spread and made me infertile. Thank you, I owe you so much. Ladies if your unsure your diagnoses was correct Please check the Endomitrosis website and see if your symptoms match it. They are nearly the same as VV.
CommentHy! I am looking a good doctor in Columbus, Oh . May by anyone knows . Please let me know.
CommentHi Everyone, after reading all your entries into the guestbook, I think I have been suffering from Vulvodynia for the past 12 months. I will tell my story of troubles I have had...Firstly I was diagnoised with CIN III about 8 years ago, successfully this was cured by LEEP. Since being diagnosed with CIN III, I have had on and off pevlic pain 1 week prior to menstruation and on and off bleeding/spotting after intercourse. Also approximately 12 months ago I developed what I thought was a thrush infection, however after 3 attempts of treating what I thought was thrush with Diflucan and ongoing topical creams, the symptoms of burning, itching, pain, swelling of the vulva area and discharge continued month after month. I visited by GP who ran tests for STD's, pap, blood & urine and all tests came back negative for any problems. However after this the symptoms persisted. So I visited my Dr again who perscribed Fasign for possible bacterial infection, after I took the Fasign I experience incredible burning that it left me in tears. Therefore I decided to obtain a referral to a GYN OB for a second opinion. I have been taking the pill for over 10 years and stopped 3 months ago to prepare for pregnancy. Since stopping the pill I have noticed my symptoms of burning, itching and pain has decreased and I have stopped using creams, body wash, panty liners, pads and use washing detergent for sensitive skin and only using tap cool water to bath the vulva area twice a day and this has helped tremendously to the point that I do not have hardly any symptoms - thankfully! I have visited by GYN who advises that there isn't anything abnormal happening in the vulva area and the cervix is good, however I'm still experience slight bleeding after intercourse and Im yet to undergo a test to determine what the cause is there. So Im hoping for a positive outcome so I can start trying to concieve. But please girls I had terrible suspected what I think was Vulvadynia.. so try what I did ... and fingers crossed I hope it helps you. Please let me know on this website if anyone is experiencing something similar to me..... All the best for you all... I know what you are going through...
CommentDoes anyone know a good vulvodynia doctor in Cleveland, OH. I have been suffering for about a year, and have been diagnosed with vestibulitis and vulvodynia. My doctor who diagnosed me is leaving the state. I am getting maried in six months, and hope I can figure out the source of my pain, soon Like everyone, I want to get back to normal once and for all. Thanks!
CommentTo Melissa. I am living in Columbus and I am looking for doctor also.. You said that you have vulvodynia. What kind of symptoms do you have? I have vulvodynia and vestibulitis too. Thanks.
CommentTO WENDY, I also experience blood after intercourse and severe burning. I have crippling pain if my boyfriend attempts to enter me, however, if I use plenty of lubrication and perservere he can get inside me. The pain then decreases till I reach orgasm, after which point the pain comes back with a vengeance (or however its spelt). I can't stand to have him inside me after we have climaxed. It is when he pulls out that I notice blood. Sometimes alot, sometimes only a little. But blood just doesn't seem right no matter how much there is. Perhaps you could email me if you wanted to talk further. I have an appointment with a specialist on the 15th so I might get a clearer idea of my problem.
CommentEFFEXOR QUESTION - Please answer effexor ladies. Do most of you have lucj with 37.5 and not have to go up to 75? Please let me know.
CommentSorry.. meant "luck". hate typos!
CommentAlso, has anyone here actually seen Dr. Glazer or a Dr. Gae Rodke? I'd appreciate any feedback if you have.
CommentHi M and anyone else, For the last year I've had severe burning/itching and general rawness both with intercourse and normal day to day activities. I have been tested twice for all stds and yeast; everything has come back normal both times. I was an avid runner--running about 6- 8 miles 6 times a week. And now I don't run at all due to the irritation and pain that follows. My first experience with pain was a general soreness/sink irritation in the area. At some point, I had taken a bubble bath with a new type of soap and from that point on I experienced intense burning, itching etc. Sex became impossible due to excruciating pain. I had sex during this initial time period and experienced tearing in the area as well. Pain and soreness is especially bad during the week before my period. My doctor has been extremely patient and understanding. After all tests were negative (as she suspected they would be). She officially diagnosed me wih both vulvodynia and vestibulitis (she used the q-tip test). I rinse the area with purified water; I ice the area every day --and these things seem to have helped. Although, I reallly want to get to the cause of the problem--not just masking the pain and soreness. I've been referred to a rheumotologist for possible autoimmune. Once that is ruled out; I want to explore endometriosis and pelvic muscle tension issues. I haven't had intercourse since September 04. I am getting married in november, and really want to get back to normal. It is really getting depressing. There are more details etc. --but any suggestions, ideas are most welcome.
CommentCan someone recommend a good doctor in NYC? I am 23 and have been suffering for two years. Thanks!
CommentKB- Try e-mailing Dr. Glazer and asking him. Also, the NVA at www.nva.org has a referral list available if you are interested in joining. Good luck! Margaret
CommentTo Melissa: I've been posting since Guestbook Thirteen when my wife was diagnosed with Vulvodynia. Her symptoms were recurrent tear at the six o'clock position, raw areas of skin, burning and itching. She does get U.T.I. every four to six months and a less frequent yeast infection. To my knowledge no woman suffering with the thinning and tearing skin has ever discovered the reason. The skin must be undergoing some change from normal healthy skin to what you and other ladies here are living with. Right now you can try some of the old standbys to lessen your pain. Stop using all soaps and fragrances near your vulva, just use plain water. Only wear cotton panties. Read past Guestbooks and learn about the different medications your doctor may prescribe in an effort to help you. Medicines like Estrace which are supposed to thicken the skin but repeated use can lead to further thinning. Have your hormone levels checked to rule out low estrogen. Consider examining your diet to rule out food allergies. Prepare yourself for a long journey of trial and error. Please try and keep a positive attitude so you can help yourself. There is a lot of support, you are not alone. Best of luck.
CommentThanks Frank. I've never had a UTI infection. I had a yeast infection 1 time about 10 years ago (I was 19). Although thinking back over my history --there were times in the 1-2 years preceding my full blown symptoms that I thought I had UTI infections (I would have soreness and redness in the area and feeling like I needed to urinate) only to test negative to any infection. I get terrible cramps during my time of the month, but have also experienced cramping during intercourse and painful cysts on my ovaries. The cysts were identified through ultrasound; I was told they were not serious and may come and go. I went on Yasmine birth control in March 04 (symptoms had started in January 04 and were full blown by June 04--tearing happened in June 04) and would have that feeling all the time (similar to what I had a couple of years ago). When I went off yasmine, and started avoiding any possible chemcial irritants (soaps, detergents etc) things have gotten better --but I won't have sex for fear of the pain. No real point here--just further explaining my history...Thanks for ideas to follow-up on
CommentCan anyone recommend a good doctor whom you would trust to do a colposcopy? Last year, I had one that was extremely traumatic and agonizingly painful, and today, I received a call from the nurse saying that my pap results indicate I must have another one. Other than that bit of news, I have been doing great. No more thin skin, bleeding or tearing at the 6 o'clock since going off the Pill. As healthy as I've been, I am optimistic that my strengthening immune system will be able to combat the cause of the mildly abnormal pap, but I will follow through on the colposcopy once I determne who to see. Does anyone have recommendations (for a colposcopy, specifically) for L.A., Orange or Ventura County?
CommentHi, Just wanted to post some things that has seemed to have taken me out of the woods. The website womens-menapause-health.com. It gives a listing of estrogen rich foods. Natural estrogen creme ( I used it right on my vagina). Natural progestrone creme. Acidopholus and plenty of water. Walking every day. I feel great. I hope you will too!!! Good luck!
CommentHas anyone seen Dr. Andrew Goldstein in D.C.? (..think he practices in NY too). If so, would you recommend him? Thanks!!
CommentMy Gyno recommended Dr. Goldstein the other day...I am still looking for a Vulvodynia specialist in the Richmond VA area. If I cant find one, I will need to travel to DC to see Dr. Goldstein....Keep us posted if you do go see him.
CommentThousands of Women Suffering from Unrelenting Gynecologic Pain Flood Congress with Emotional Appeals for Help ... SILVER SPRING, Md., June 7 /PRNewswire/ -- On June 9th, the nation's Capitol will host a pivotal Congressional briefing on three highly prevalent, life-altering chronic pelvic pain conditions -- vulvodynia, endometriosis and uterine fibroids. Last week, the US Congress received thousands of e-mails from women across the country, many of whom met with representatives to plead for research funding for a mysterious medical condition affecting 6 million American women. "For the past 10 years, I've heard thousands of heartbreaking stories from women who'd lost all hope of living a normal life. Our patient advocacy campaign has restored hope to these women," said Phyllis Mate, President of the National Vulvodynia Association (NVA). Vulvodynia affects women of all ages. Odds are that you or someone you know suffers from this debilitating chronic pain disorder, but has not yet been diagnosed. Vulvodynia is chronic vulvar pain in the absence of infection or skin disease of the vulva or vagina, characterized by burning, stinging, and/or rawness of the female genitalia. Some women describe the pain as "having acid poured into an open wound." Data from an NIH-funded Harvard study indicates that 16 percent of women experience chronic vulvar pain during their lifetime and 6 percent experience symptoms before age 25 (Harlow, 2003). Most sufferers visit five or more doctors before receiving an accurate diagnosis. Vulvodynia has a profound impact on quality of life. It affects the ability to engage in sexual intercourse and can impair the ability to work. In severe cases, women are bedridden with excruciating pain. Because of a lack of research, its causes are unknown. Vulvodynia is not caused by an active infection or sexually transmitted disease. Medical professionals speculate that causes may include an injury, trauma, or genetic factors. Current treatments are limited in their effectiveness and aimed solely at managing symptoms. With the support of the NVA, women suffering from vulvodynia are becoming health activists. "Speaking to my representatives made me feel that I really can make a difference!" said Maryanne, a long-time vulvodynia sufferer and participant in last week's inaugural NVA Grassroots Advocacy Week. Help raise awareness NOW. About the NVA The National Vulvodynia Association, a non-profit organization established in 1994, began as a small volunteer group. Today, more than 4,000 patients and health care practitioners support the organization. NVA disseminates newsletters written by medical experts, provides support services and physician referrals, and promotes research on the disorder. Its medical advisory board is comprised of experts from diverse medical specialties, including gynecology, pain management and physical therapy. For more information, contact NVA Publicity Director, Sharon Jennings, at sharon@nva.org, 818-841-8487 or 818-822-6681 (cell). Alternately, contact NVA President Phyllis Mate at mate@nva.org, 301-299-0775 or 301-793-7437 (cell). Please link directly to the National Vulvodynia Association at http://www.nva.org SOURCE National Vulvodynia Association Web Site: http://www.nva.org
CommentHi Shaye - I'm so glad to hear that Dr. Marcus was able to help you. He really is a nice man. Keep us posted on your progress and let us know how you feel.
CommentKatie, I actually saw Dr. Rodke and Glazier about 6 years ago. It was $850.00 (cash up front). Dr. Glazier did his test for the pelvic floor (even found it amusing because I couldn't walk with a this stuck up me) and Dr. Rodke did all the cultures etc. I did see her a few times, she just put me on Estrace cream and yeast infection meds and referred me to a urologist in Long Island who tried to numb my urethra, but it did not work. Have not gone back since, not to say that maybe if I had, she would had tried more things. It was just too far and I'm not a city driver so I always had to get someone to take me....... Good Luck to you!
Commentto those of you who have been continuing to work out or go to the gym under your conditions- if you tough it out and keep working out, do you feel the pain gets worse that night or better?
CommentDo you any of you know if he accepts EMPIRE: Blue cross blue shield as insurance??
CommentHello everyone. I've not posted anything here in quite a while, but just wanted to check in to let you know what I have found to be helpful to me. I was diagnosed with vulvodynia several years ago and then began to get fibromyalgia-like symptoms as well. Anyways, I am doing GREAT! I wanted to share with you what I believe is helping me. Perhaps it will help you as well. I feel the best when I: 1) get plenty of sleep (I try to get 7-8 hours a night) 2) exercise (I do a lot of walking as well as mixing yoga, pilates, and light weights) 3) drink plenty of water (I shoot for eight 8-ounce glasses a day) I am ALSO convinced that magnesium and malic acid have helped me. I am taking a combination pill from Vitamin World -- it contains magnesium and malic acid. I learned that there is a school of thought that believes these two items (magnesium and malic acid) can relieve the symptoms of fibromyalgia. There is another school of thought that believes that vulvodynia is a part of fibromyalgia (a subset of it, if you will). I don't know -- but I do know that since I've been taking the magnesium/malic acid pill, I've felt much better. The other thing that I highly recommend is this: don't let your doctor just diagnose you with a "yeast infection." That’s how this whole nightmare began with me. There are several kinds of yeast. It took me a year and a half, I believe it was, to get the proper diagnosis. The normal yeast medications will not necessary work on all types of yeast. The key word is "atypical." Have your doctor test you for "atypical" yeasts. Nystatin and boric acid (both vaginal inserts) made a world of difference to me with regard to my atypical yeast infection. I share these tidbits in the hope that this information will help others. If you knew how bad off I was -- and how great I'm doing now -- you'd be amazed. I don’t feel perfect; but I am much MUCH improved. There is hope. You just have to find the right combination of treatments. Good luck to you all. And, keep the faith… Deborah
CommentLadies - Epsom salt baths have made a remarkable improvement on my VV for the last 2 weeks. I've been suffering for 2 years. 2 weeks ago, I added epsom to my bath and have been almost perfect. 2 baths/day. I read above about magnesium vit and decided to check what is actually in epsom salt. To my surprise it's magnesium! Here's some info about it and only costs $ 1.59 at your local pharmacy: When magnesium sulfate is absorbed through the skin, such as in a bath, it draws toxins from the body, sedates the nervous system, reduces swelling, relaxes muscles, is a natural emollient, exfoliator (if rubbed), and much more. Give it a try.
CommentThe Spring 2005 newsletter of the National Vulvodynia Association (www.nva.org) reports a presentation at a recent vulvodynia research conference sponsored by Gloria Bachman M.D., a recipient of a recent NIH grant for the study of vulvodynia. The presentation was from Frank Dreher PhD of Neocutis SA, a Swiss company that provides innovative topical preparations for dermatological and gynecological conditions. Neocutis and the University Hospital of Lausanne, Switzerland, dermatology department, have developed a topical “processed skin cell protein” (PSP) with anti-inflammatory cytokine activity that “may help to restore a normal immune balance in women with VVS.” Researchers presented data on 11 women with long-terms VVS. All 11 patients following the twice daily vulvar application regimen of the PSP product “experienced significant reduction in vulvar pain levels after four to eight weeks.” Although the manufacturer intends to conduct the research necessary to apply for FDA approval of this product, presently it is classified as a non prescription “cosmaceutical”. The product is not distributed through any traditional retail outlets at this time. It sells for $125.00 a tube and each tube lasts approximately 2 months with twice daily application. In a recent meeting with Neocutis executives I have been given access to this product at the retail price. I am seeking VVS sufferers who would be interested in purchasing this product and participating in a study which involves completing a survey regarding of their vulvar symptoms before and after the use of PSP. Anyone interested can contact me by email at: DrGlazer@nyc.rr.com Thanks Howard I. Glazer Ph.D.
CommentDR. GOLDSTEIN - Anyone with questions about Dr. Goldstein can email me privately.
CommentI'm not sure if he does take empire, but I'm sure if you call his office, they will be happy to help you. His number is 201-447-0077. Good luck!!! Also, is anyone going to be in this study using Neocutis...I've been reading about it and it looks interesting?
CommentAm interested to know how you are doing with your treatment plan from Dr. Goldstein?
CommentJust wanted to pass on some information. I have completely recovered from my vv. My thoughts are (as many others have also suggested) that a lack of estrogen was my culprit. In my case I'd get a yeast infection if I had deficient estrogen, especially when I had a stressful event happen to me. It was hard for me to believe at first since I suffered from endometriosis which is an estrogen dominent condition. As I treated myself for the lack of estrogen, my yeast infection cleared-up and the vv went away. Matter-of-fact I remember reading a book about how many women get yeast infections around their periods when there estrogen is at it's lowest. I call estrogen the drill master. It seems to keep yeast in line, stopping from getting out of control. Anyway, I found by taking estrogen enriched foods, walking and taking my vitamins everyday, my symptoms disappeared. You can find he estrogen enriched foods listed on womens-menapause-health.com. I wanted to get fast results, so I took more flax seed then they specified and it worked. The only side effect I read about and it happed to me was that I had to go to the bathroom more. Also, I happened to see a cooking program yesterday that was about taking control of your health through food. The recipes seem tasty. I believe that website was Christinacooks.com. Good luck!
CommentRe: Katie's Effexor Question. I know I was taking 37.5mg each time, but I think I was taking them every 12 hours, so I guess 75mg/day spread out to keep killing the pain. If I'm remembering it correctly, it was either that for me or just taking 37.5/day. (It's blurry - it's been a year). I still credit that and the physio as the combination for ending my personal battle with this illness.
Commenthi im amy i posted a while ago for the first time i have vulval vestibulitis. im going to try the low oxalate diet. ive researched it on the net its so confusing. different lists contradict each other. cucumbers, low, then cucumbers high. i can eat mushrooms, the next list i can`t! i was wondering is The low oxalate cookbook by the vulval pain foundation worth buying? im a student and trying to save every penny i can. I just have a feeling theres a chance i`ll be spending my money on a flimsy leaflet! is it good to drink cranberry juice? because i know its good for "downstairs" problems generally but its mentioned as medium in oxalates. also is calcium citrate available in health food shops or just prescription? please dont think im being lazy and not researching myself, its just the websites often contradict each other!
Commentp.s. doesnt it annoy you where charlotte has vulvodynia in sex and the city and shes cured after one episode!
CommentI am not cured although I think the physical therapy has helped. I started taking effexor again (9 days now) after starting for a week and then stopping (because of sexual side effects) and I don't really feel a difference yet. Dr. Goldstein said that effexor can actually cure a nerve problem after you take it for a few months so it might wind up being worth the distressing side effects for a while. One good side effect though is that it seems I have a super metabolism. I've been snacking on some "bad" stuff and still maintaining my weight. Physical therapy and hot baths still prove to be the most effective remedies for me thus far. I actually read an article that no matter what caused vulvondynia in a group of women (irritants, trauma, std or pelvic floor dysfunction) 85% benefited from physical therapy. At the very least it relaxes you. Might be worth looking into for everyone regardless of what triggered your vulvodynia. I've been very frustrated lately so I haven't been posting much. I will try to write more soon. I need to try and keep my chin up.
CommentAlso, thanks for the effexor comments. I think I can go up to 75 tomorrow. Might as well give it a shot.
CommentHas anyone seen a reproductive endocrinologist? It was suggested to me. I'm menopausal and have Vulvodynia. I haven't been able to find a decent Dr. to treat me. It's hard enough to find a Gyn. who can balance hormones and then have to find one who can treat menopause AND Vulvodynia.
CommentI think the whole point of everyones entries into the guestbooks is ... why is this happening to us? What causes it, how can we cure these problems? Does any one know? Has anyone visited a Dr and had a clear, concise and confirmed answer? If so, I would be extremely relieved to know. My GYN didn't even comment on what he thought it might be with all the pain, burning etc? I ve had several tests but everything is coming up clear.
CommentAny Body Want To Help The Poor of the world, Then Please Contact, By Mail,Phone or, E-mail: Subhash Das(President) United Resources International. 7,Bikrampur, P.O-Kataganj, Dist-Nadia, West Bengal, Pin-741250, India. Ph:9331235452, E-mail:das.subhash@gmail.com
CommentHello ladies! I also posted this post in the yahoo groups but anyway...... I was just wondering if anybody who is takin Elavil is having success with it? What amoung of mgs? Ive been on it for almost 4 weeks (50mg) and im still have a lot of pain (might have fibro, going to see a rheumotolgist), major vvs flares and still have a lot of anxiety and depression. I am seeking therapy for sexual trauma (incest and rape) and im thinking maybe my mood swings may have to do with that as well (she is using EMDR- eye movement desensitzation reprocessing, has anybody gone through this type of therapy before?) Its really tough facing the demons of the past, ya know? Anyway, i am tryign to get on the ball to start exercising, but tis hard when im in pain. I hear that this drug takes awhile to get into the system, goign to ask my doc to up the dosage, a psychiatrist told me that if i want to treat the anxiety and depression i have to be on the amount of mgs for my weight, so it sounds like i need to double itplus a few!!! I havent had many bad sideeffects from it so far (some constipation and dry mouth and maybe a couple pounds(?)) but i am wondering, do the side effects increase when the dose is increased or did i already get over the "hump" of the side effects? Ive suffered from depression (dysthmia) for a few years now, comes and goes but drugs like Paxil lexapro and wellbutrin were not good matches for me due to the side effects. Due to my anger outbursts and such, im really hoping the drug kicks in. I think a lot of my depression stems from the chronic pain and also the issues that i have not yet been able to get over in my life. Im afraid to try zoloft bc of the same sexual side effects, bad enough i dont want it now becuase of the pain...My therapist wanted me to imagine sex with my boyfriend that was not painful and i couldnt, dont know, maybe next week.....its been almost 2 years painful! Anyway, sorry for the long post and the babbling, guess i just need to get it out and knowing that there are so many women out there with a lot of the same problems/issues makes things a bit easier. Thank you for listeing (err..reading) If anybody could help me i would really appreciate it. ~Cindy Stitt
CommentHi. My name is Katie. I am new to learning about vulvodynia, so I have many questions. Any expertise on this subject is much appreciated. I am 20 years old. About two months ago I started having burning/stinging in my vagina, and I also felt the burning while urinating. I was pretty confident I had a UTI. I have a history of having UTIs. My doctor said that he did not see any bacteria in my urine. However, he treated me for a UTI anyway. I didn't have as much pain while urininating after I got off the antibiotic, but I still had the burning/stinging in my vaginal area. I went back to my doctor and he did a v-prep test. He said that test showed that I had a yeast infection, so he prescribed me Diflucan. I haven't felt any different after taking the Diflucan and still have the irritation/burning/stinging. I am so frustrated and I feel like this pain is never going to go away. I have been in tears for about two weeks now. Has anyone been diagnosed with a yeast infection before they were diagnosed with vulvodynia? Thanks for all of your help in advance and good luck to all of you!
CommentSue- I traveled to see Dr. Metzger who is an Endocronologists and GYN. She was able to address both of my issues. She is in Los Altos, CA. Here is her website ..www.harmonywomenshealth.com.
CommentKaite- Yes, my problems began with anti-biotics for a bladder infection that led to a yeast infections, that led to Vulvodynia. I would recommend you begin the low-glycemic diet, take Grafefruit Seed Extract and Calcium Citrate w/Magnesium. I took Diflucan for 6 months. It never made me feel better. Later with another MD sensitivity tested my yeast it indicated it was resistent to Diflucan, no wonder it never worked. I have had much more success with natural anti-fungals and the low-glycemic diet. After 1 month of taking natural anti-fungals, staying on the diet and addressing both food and hormone allergies my Vulvodynia symptoms have 98% disappeared. You are welcoem to e-mail me for any questions. Margaret margaretmelkins@msn.com
CommentTo katie840206 Yes, my vulvodynia started with a bad yeast infection. It took me well over a year to get the proper treatment. My gynecologists kept trying to treat me for a "typical" yeast infection. Unfortunately, what I had was not a typical yeast. None of these doctors thought to test me for the "atypical" yeast. A gynecological dermatologist was the one that suggested that. "Atypical" yeast needs a different medicine. Once I got the proper diagnosis and got on the proper medicine, I was much improved. (See my post above - June 8th - for more information) Also, note: the slide that they were checking for "atypical" yeast was monitored over the course of two weeks or so... meaning that they couldn't see the yeast right away. It took a while for them to be able to see it. I ended up being diagnosed with Torulopsis glabrata. My very best to you. I know what you're going through; stay strong and press the doctors to test you for other forms of yeast. My doctors kept telling me "it's a yeast infection" and then after the normal medications didn't take care of it that they just "didn't know/didn't see anything else wrong." Don't take "I don't know" for an answer. I was in pain for over a year because I didn't know what to ask for/trusted that they knew what to look for. The third doctor fixed me up; I just wish I hadn't wasted so much time on the first two! Don't go through what I went through: Ask your doctor to test you for "atypical" yeast. (and there are several different kinds) Deborah
CommentHi -- My wife took some GNC Candida Quick Cleanse last night. Vomit & Diareah (sp) all night. Anyone ever try this stuff? Does the body adjust to it after a few days? Also -- We are following up on the "Atypical" yeast angle. Does anyone know the standard treatment regimine for this? Thanks!
CommentDeborah - did you have symptoms w/ "Atypical" Yeast? I"ve been following your pain managing techiques [magnesium - helps repair muscle & nerves] and have to say I've felt a world of difference. I'm just wondering if my pain flare ups are due to some atypical yeast still lying around, which hasn't been treated. Once I'm healed, I cannot wait to write a letter to all of my doctors letting them know what worked, two years and a couple thousand later!!
CommentHi everyone, I'm a 33 year old who has had vulvar vestibulitis for over 10 years. I started having sex at 19, and got what they call "honeymoon cystitis", rounds of cystitis for which I took antibiotics for which I got yeast infections, which required more treatment. This made sex pretty uncomfortable. After 6 months the irritation persisted mostly with urination(sometimes so painful I would leave class to sit on the toilet and cry) but the doctor couldn't find any infection. So she tried a "low grade" antibiotic that I took just before intercourse. That seemed to help and the problems cleared up. A year later and with a new boyfriend, I took a round of antibiotics for a skin infection and started experiencing pain with intercourse again, but this time on penetration. I started having pain with urination again. It took a visits to a few different urologists and a few different gynecologists, and a few different types of medications and tests, none of which worked, over the course of 5 - 6 years, before I found a gynecologist who could diagnose me with something. They all kept telling me they couldn't find something, and I would go away and suffer for awhile and hope it would go away, and then I would get mad again and come back and demand my family doctor send me to see someone different. This gynecologist diagnosed me with vaginismus, which is involuntary contraction of the muscles surrounding the entry to the vagina. I was relieved to have a diagnosis but not relieved when he told me that it was a psychological reaction to pain, where the body tries to shut out something that's hurting it. I couldn't understand what could have provoked it. Sex hadn't been painful and as far as I knew there was no history of abuse (although he made me wonder). And there was no magical pill, all I could do was try to re-train my brain that there was no pain associated with penetration. So I went away for a year to try to retrain my mind into thinking that penetration didn't hurt by stretching the muscle and attemping penetration with gradually increasing sized objects (even inserting a tampon hurt). You can probably guess how well that went when I really had vulvodynia. I could and did retrain the muscle, but the pain didn't go away. I think people should be aware that this is a logical side effect of vulvodynia if you persist with trying to have intercourse, that your body may decide to try to prevent. I don't think I had intercourse more than a handful of times over the 5 or 6 years, but the pain almost always made me stop. So a year later I went back to the gynecologist and told him that it wasn't working, and the pain was still there. He offered to send me to a specialist in Hamilton, but the waiting list was long and it was quite a drive, did I want to try that? He'd offered the last time I was there but this time I said yes, I was tired of putting off anything that might give me an answer. The specialist immediately diagnosed me with vulvar vestibulitis. Again, I was relieved to have a diagnosis and know that I was NOT crazy, but again it was a diagnosis with no magic pill and they didn't know what caused it. What was wrong with the medical profession anyway? Why did it take so long to find someone who knew what I was talking about? How could they not know more about something so painful that affected my life so completely? He suggested that a few simple changes might solve the problem, the easy stuff like white underwear and rincing twice and common self-care things. A year later with no change I went back. Then over the course of a year and a half we tried several things, topical anaesthetic, diflucan, amatriptlyne, yogurt, and I tried baby powder, diaper rash cream, now I'm moving to organics. Organic tampons made a HUGE difference for me. But nothing has worked long-term and I'm still trying to keep my relationship together (still with the same boyfriend) and hoping to start a family. I wish I had better encouragement for everyone, I know it's discouraging how long some problems take to solve. I just know from experience that it's better to keep pushing your doctors to help you. I wasted too much time being embarrassed and thinking they couldn't find anything wrong, and I'm still pushing for a solution and I think it's been about 10 years now. As an additional comment, I have an answer why people don't want to discuss this with their friends, family, boss. How do you tell these people that you have something that has prevented you from having sex for 10 years? I just don't think it's something they can comprehend or want to know.
CommentTo JB: My dermatologist diagnosed me with an atypical yeast called "Torulopsis Glabrata". She presribed for me: Boric Acid vaginal inserts (600 mg) -- one (1) capsule vaginally each morning (she called this prescription into my pharmacy; they special-made the boric acid capsules for me) AND Nystatin vaginal inserts (100,000 U) -- one (1) tablet vaginally at bedtime each night So, I was using these products together: the boric acid in the morning, the nystatin at bedtime. I hope this helps you out. Have your wife run all this by her doctor, and see if he/she thinks this program might work for her. I guess there are SEVERAL different types of "atypical yeasts," so I'm not sure if the nystatin/boric acid will work on all of them, but her doctor should know that.
CommentTo NTS: YES! Boy did I ever have symptoms with the atypical yeast infection!: itching, burning, low backache... just felt lousy. The Nystatin and Boric Acid worked wonders.
Commentwhat do they do to you when you go to physical therapy?? what exercises or streatches do you do?
CommentHi evry one.I have dicharge that burning skin of vulva, but my yeast tests are negative . May be some one has same symptoms?tired I can't found a good doctor. To DEBORAH Did your skin was hypersensitive? I have very sensitive skin,so i can't even aply oil because it's start burning . I have to sit on donut pillow and walking is very painfull for me me May be it's atyical yeast? Thank yuo very much.
CommentTo M: My skin (all over) is sensitive, in that I am allergic to scented products, etc. As for the skin in the vulvar area, yes, when I had the atypical yeast infection, that area was red... it was raw. Sitting was painful; walking (the friction caused by it) was painful; any clothing that was restrictive (tight jeans, pantyhose, etc.) was painful. I can't stress enough to ask your doctor to test you for atypical yeast. I mean, if my two gynecologists didn't think to check for it, there are probably others who wouldn't either. I hate to see anyone go through what I went through with this if they don't have to.
CommentIncredible site you got there! I really, really like it here.
CommentDeborah: Thanks for the info -- we'll check it out. Question: Have any of you that were diagnosed with atypical yeast also tested for HIV? Thanks --
CommentDeborah - once you started your current treatment plan, how soon after did you feel better? Also, how long do you feel you will continue w/ your current plan? Just wondering because it's been 3 weeks of feeling 90% ... <horrah!> But I don't want to get too excited. I start PT tomorrow so I will report about that on Fri.
CommentWell I have just returned from my first gynaecologist apppointment, only to be told. I have no signs of any problems, no irritated skin, womb looks fine, therefore it probably is all in my head. I could've smacked him one!! I said to him, well if it is all in my head how do you explain the heavy bleeding and spotting after intercourse and between periods? How do you explain my inability to let my boyfriend enter me!? I was sooo upset and angry. He had no explanation for my bleeding or pain and sent me away reassuring me 'we will get this sorted out eventually'. Sorry for getting angry ladies but it is just really starting to get to me. It is putting a huge strain on my life and relationship. I feel like I could just cry whenever I talk about it. It gets worse every day. I feel like I'm talking to these doctors and specialists but no one is actually listening to me. I can't wear my favourite jeans now, for any length of time, I can't travel in a car for too long without excrutiating throbbing pains. Why don't they listen and at least try to help me???
CommentAngela, I understand how frustrating and how you feel like your life is spinning out of control. We all know! Have a glass of wine and take a warm bath w/ epsom salt to calm your mind and soothe your areas. Unfortunately, it's up to us to do the research. Think of this, you have an advantage by having found this wonderful guestbook. Start at the top and start reading. I bet we all wish we had found this years ago ..
CommentDONT HAVE A GLASS OF WINE!!!!!!!!!!!!!!!! Wine can cause us more pain!!!!!!!!!!!!
CommentAngela - I feel your frustration. The first thing you need to do is never go back to that doctor again. Join the NVA.org. It's $40 and they'll send you a list of practitioners in your state that treat vulvodynia and tough female issues. Then, go back and read the guestbook. Try to locate other women with the same problems and read what helped them. I think vulvodynia is caused in different women for different reasons. For some, it started with the onset of some type of infection that left the skin down there in a tizzy and a long time to recover. For others, it's systemic yeast (also related to the infection thing). I also think for some others, it's nerve related. I read back in one of the guestbooks a women Tammy was having pain, throbbing and it turned out that she had injured her hip flexor, which was spasming and in turn pinching her pudendal nerve causing everythig down there to be out of wack. She saw a chiropractor that specializes in Active Release Technique and this helped her. So, you will see that there are many things that can cause all of us different problems. Read some of Margaret's posts, too. She has some great suggestions, but I'm not sure if your problems are the same as hers. In any case, the more reading and researching you do, the less out of control you will feel and the more you'll realize that the majority of doctors have no idea how to treat any of our conditions...you'll be the one telling them what RX to write, etc. Please don't give up hope...and don't ever see that jerky doctor again.
CommentTo Deborah. Thank you!! Can you please tell me:Did you had burning,itching,redness in vagina or only vulva. And normal yeast test were negative? What kind of dichardge did you have? Thank you very, very much.
CommentI have been reading this guestbook since I began having pain about 7 months ago. I now see what a mistake it was to allow my regular gyno to keep treating me with yeast and bacterial infection medicine when cultures came out negative. I have seen Dr. Goldstein (driving from Virginia) and he has literally given me my life back. I have been taking Elavil 50 mg. along with PT and have gone from being in constant agony to living virtually pain free. I still have pain when pressure is applied to the specific areas but none at all during normal daily activities. I am hoping at my second follow up appointment with him that we can tweak the treatment to eliminate all pain. He is expensive -- $1600 for my initial consult and $358 for first follow up but worth every penny. I am struggling a little with weight gain but am upping my activity to compensate. I'd rather have weight gain and be pain free than thin and in pain! I highly recommend traveling to see him if you can.
CommentThat is SO SO great that you are feeling relief!! Did Dr. Goldstein do any tests for infection (I am most curious if he tested for atypical yeast)? Did he find any infection and treat you for it along with the other meds and the PT that has been working for you? Again, I am really happy you are feeling better!!
CommentKind of hard to say really how soon I felt better after my current treatment plan started. The reason that I say that is that my symptoms (even after I beat the yeast!) have flared up and then down again. I had good times when I felt alright and then times when everything started bothering me at once. It started out with the vulvar irritation, back pain, gastrointestinal problems, and bladder pain... then, the other "fibromyalgia-like" stuff started: tingling sensations in my face and elsewhere, nerve pain, soreness and stiffness, etc. Makes it impossible to put a pattern to it! But, it has appeared that since I've been doing the malic acid/magnesium supplement, I have longer periods of feeling better (and the flare-ups are pretty mild compared to what they were). Another treatment I tried was the guaifenesin treatment -- and it actually made me feel better in many ways -- but when guaifenesin became "patented," the price sky-rocketed! AND, it is now over-the-counter (rather than prescription), so my insurance will no longer cover it. I could no longer afford it... so I continued to search and that's when I found the magnesium/malic acid. As for how long I'll keep doing my current treatment: well, I hate to stop taking the malic acid and magnesium and risking that I'll feel bad again! :) So, for now, I'm sticking with it! I'm also taking a multi-vitamin, garlic, calcium/vit D. supplement, vitamin c, and going to a chiropractor every other month for an adjustment. And, as I said in a previous post: LOTS of water, exercise, and plenty of sleep.
CommentTo M: It's been a long while, but it seems as though I recall having pain in the vagina as well. As for yeast tests: well, initial doctors kept trying to treat me for regular yeast, to no avail. Then they began to tell me that they couldn't find anything wrong with me: so, I guess I must have tested negative for regular yeast. (??) Discharge: yes, but I don't recall it looking particularly abnormal, as you hear it described by some folks who have had yeast infections.
CommentHi- I'm not sure if i have vulvodynia and could really use your help. I am 29 years old and in February 2005, I became pregnant. In March, I got the flu and haven't been right since then. It started with what I thought was a UTI so the doc gave me medicine. Then I thought I had a yeast infection. More medicine. It mostly burned on the outside, but sometimes right near the opening. It would also burn after I urinated and when I would sit down and cross my legs. Sometimes it was so bad that I would just leave work and go home and cry. The doctor's tested me for UTI's, yeast and STD's and all the tests came back negative. They said it was probable due to my pregnancy and would go away after I delivered. I ended up having to terminate my pregnancy in May due to serious problems with the baby. I had bleeding for about two weeks, but not much burning. For the past few weeks, I have felt OK for the most part. It just sometimes feels uncomfortable, like something is going to fall out of me. It felt that way sometimes when i was pregnant too, but i just figured the baby was low or something. Does vulvodynia cause that feeling? Also, I don't have pain with sex, though I'm not really interested in it anymore. Sometimes the outside of my vagina is red, but most of the time it's not. I'm just really confused as to what's going on. The past couple of days, the burning has come back a little. It's not anywhere near as bad as when I was pregnant. It's much more tolerable now. Do you think I have vulvodynia or am i being paranoid? I just got married and really want to feel nornal again, both mentally and physically. I'm just scared that I have this and it's not curable. Any help/comments/thoughts would be much appreciated.
CommentDr. Goldstein did test a very complete test for infections and found a bacterial infection and treated it. Then I developed yeast, but he treated that too and I recently had a check and am clear of all infections.
CommentLauryn- Have you gone to www.nva.org ? It is the National Vulvodynia Association website. Do some reading on the website, it may help you with a diagnsosis. It also offers information about specialist and self care comfort treatments. Also, I would suggest reading "The V Book," by Elizabeth Stewart, M.D. Good luck! Margaret
CommentBy the way, Margaret, I think Dr Stewart is incredible! I've never heard anyone mention her here before (since I've been reading). Have you seen her? Lauryn, you're NOT paranoid. You know when something's not right, so don't be miserable. Unfortuantely, no one here can diagnose, just say what's helped. Find a specialist. It doesn't hurt to see one. I've heard some are expensive, but most I know of are covered. Maybe it will go away, but in the meantime you can be awaiting your appt for if it doesn't. Good luck! Someone earlier on asked what they do in physical therapy. To you, it was very helpful for me. I put it off for almost a year after having it recommended. I thought it was weird. You'll do a lot of kegel exercises (sometimes with an insert there to measure your strength of contraction) and stretching using your fingers and "dilators." The point is to strengthen the muscles and learn to relax the area. You may be surprised at how tense you are without knowing it. That's how PT was for me. Hope it helps.
CommentYes, Dr. Goldstein did test for atypical yeast as well as a lot of other things. In response to what the physical therapist does, she puts pressure on different muscles and trigger points to help the muscles relax. It's amazing what a well-trained therapist can do! At home I also do butterfly stretches, straddle stretches, take warm baths and work on a yoga ball. If anyone in central Virginia needs a good PT, let me know.
CommentHi everyone! I haven't posted here before, but a comment made by Amanda really hit me. People cannot understand a sexless life. I have had v for ten years. I am 35, and have 2 children (conceived very painfully through the help of ovulation kits). My friends are very "sex oriented" people, and it is very hard to hold "girly conversations" with them. They just don't get it, and it makes me feel like a freak. They know sex is painful for me, but they could never grasp my world. I have tried topical ointments, anti-depressants, surgery, and limited physical therapy. I have honestly given up, and accepted my sexless life, although my husband has not. He still wants me to "find the cure". Because I really feel mine is muscle or back related, I suppose biofeedback or PT would be my answer.....I'm just so tired of new doctors and remedies. Has anyone ever tried acupuncture? Thanks for listening. Ann
CommentTo Ann: If you've read past guestbooks you have read my many posts. Your girlfriends and female relatives who do not suffer from vulva pain and symptoms related to vulvodynia cannot understand what you are going through. I have been hoping my wife will be cured since the first time she tore and began this life of vulvodynia. I have experienced a skin tear on my penis a couple of times and it caused me to aviod sex because of the pain, of course that is nothing compared to the pain you ladies live with every day but it was a wake up call. Still unless there is some kind of constant personal pain to deal with I like most men are driven by testosterone and a brain that wants to receive and give sexual pleasure. My wife suffering with the recurrent tear changes the ability for both of us to share, enjoy sexual intimacy and our sex drive. Frustration, depression and all the negative emotions that develop are natural given the circumstances. On the one hand I don't want the woman I love to be in pain because of my actions and on the other hand my sex drive and the desire to exchange intimacy with a woman is driving me crazy. I thought about taking medication to stop my physical sex drive but how do you stop the mind from wanting what stimulated and satisfied every sense it understands? All I'm trying to say is I love my wife and I'm sure your husband loves you as do many of the men married to ladies suffering from vulvodynia but don't expect him to ever give up hope that he will be able to be sexual with you again. Hope is what keeps us going, like the line from a movie goes " Hope is a good thing, sometimes the best of things". Take care, Frank
Commentangela sorry to hear your appointment didnt go too well. god doctors are so frustrating! the last time i went i was left feeling useless. think i was there for about two minutes after waiting months! the doctor really didnt say much to me.and i forgot half of the questions i was going to ask once i was there! i recently requested a list of vulval pain specialists in the uk from the vulval pain society website. it took them a little while to reply as its ran by volunteers but i was plased and surprised to find out there are two specialists in my area, so i advise emailing them yourself. dont give up. im not entirely sure what to do though now as i am soon going travelling for a few months and im a single gal anyway! i need to feel im doing something about my problem though so i think i will contact them and at least get on a waiting list, even if its just to discuss my problems face to face with someone. also yes i hate it when people talk about their sex lives! its so annoying! i feel like im missing out on something everyone else takes for granted.
CommentAnn- You have been through so much! The last part of my treatment for Vulvodynia was Physical Therapy and biofeedback. After years of back and leg pain from Endometriosis and then a year and a half of vaginal infections, resulting in Vulvodynia. I was amazed how PT helped. I wished I had learned about it years before. Like everything else, it is finding a great PT who specailaizes in Pelvic Floor Dysfunction. The information I received made complete sense once I thought about it. I had atrophy in the muscles that supported by pelvic floor muscles and pelvic congestion due to chronic pain and inflammation. I loved that I was finally doing something that was helping by body instead of waiting for the magic cream or pill that wasn't. This was very successful for me, but I know each women is unique in what works for them. Frank- I love your honesty! Even once I was feelling better and the vaginal infections were gone, the tissue appearing and feeling healed, I struggled with the idea of intercourse again. At first I thought it was because I was afraid it would hurt, or make things worrse, but then I realized I developed a negative response cycle to any intamacy. Something that has helped for me ..I began seeign a behavorial therapist who has experience working with women with sexual dysfunction. It has validated my fears and experiences and encouraged me to allow myself to be sexual again. It takes a lot of work for me to be sexually aroused, I must work very hard to psychologically get there. I have learned that I must try thinking about sex during the day in a delightful light if I hope to be successful that evening. I also have begun reading sexual stories before bedtime that seem to help me also. Wow, I sometimes can't believe what I share with all of you. My hope is that something I share my help someone else. I am 35, married for 14 years, a teacher and a mother of two children. Sex is usually the last thing I think of in my day and when I hit the bed at night, I usually crash. I have been very fortunate to find treatments that have made me feel so much better. I work hard everyday, eating right, taking supplements, doing my PT exercises and trying to remain positive. For me, I realized I also needed to work hard trying to improve my intimate relationship with my husband. It continues to take work and time, but the rewards have been worth it. I read the guestbook each day and think of all of you often. I hope new information finds all of you who are still suffering. Take care! Margaret
CommentThe problem is my doctor won't see me for another 3 weeks because he said my body needs time to go back to its pre-pregnancy state. I'm just worried because for the past two weeks, i have pretty mucg felt fine. And now the burning is starting again. I guess my biggest question for right now is this: After voiding, I feel a strange, uncomfortable feeling down there, like I just want to put my fingers on it and hold it. I guess the best way to describe it is it feels like something wants to come out. Has anyone ever had this symptom or anything similar? I feel like I'm going crazy.
CommentHi Ann: I've just started going to Acupuncture once weekly. Since it's only been 2 times, I won't know for awhile if it's going to help. My Acupuncturist says she has treated many women with Vulvodynia, which I find funny since I can't find more than one Dr. out here who even knows what VV is. I'll give it awhile to see what if any relief I get from the burning. I've also decided to try Neocutis cream. I read about it online and also in the NVA's spring newsletter. I've been married for over 23 years and this nightmare started about a month afterwards. So, my husband and I had good sex just a handful of times before "the act" became excruciating. I don't do well with oral medications or any hormone stronger than Estrace cream. I'll let you know how it all works out. I hope you find some relief very soon.
CommentLADIES LISTEN TO THIS !!. CELEBREX works for some people and I'm one of them. Give it a try.ANN, have you tried Lidocaine ointment ? It really deadens most pain. I also have had some muscle relaxers for other problems. I am using the leftovers about an hour before intercourse. This combo works for me. You might try it. I also have had PT since early March. That works too. We did bio-feedback once to check my kegel strength. We use ultra sound and something like accupressure along with internal stem. We find lots of non- health related things to talk about. After the first few sessions it's not so embarassing. I wish I had gone three years ago when it was first suggested. But I thought it would be just too gross. Not so. I first went twice weekly. Now I'm going once or twice a month. I also use Nurontin ointment when I don't need major pain control. I'm located in Orange County Ca. if you're looking for professional help. I can send you in the right direction.Good Luck to all
CommentHi evry one. I want to ask my doctor to prescribe elavil topically. I think may be it help. Did some one try this?
CommentHi Angela - I'm sorry to hear as well that your initial appointment wasn't successful. Is it possible to see one of the Doctors that the girls who have posted in the guestbook are recommending? As you probably can recall I posted in the guestbook a few weeks ago and you were interested to hear about my bleeding problem as well. Well, I had my last test the other day and everything can back normal, which on one hand is a relief but on the other its still frustrating to think there is no explanation for the bleeding, itching and burning. I have noted though that since discontinuing the pill about 3 months ago my symptoms have improved greatly to the point where I do not have any bleeding - maybe that was associated with the pill (not sure). As far as the Vulvadynia symptoms of itching and burning, they are minimal at present but this is probably due to my maintenance program of using cool water twice a day, avoid wearing fitted clothing, avoid lengthy sitting periods, getting more sleep and more exercise as well as maintaining a good diet. However in saying this, my symptoms are mainly present most the time however very mild compared to how it was, thankfully. After reading all the entries into the guestbook (particularly Deborah's) I'm interested to find out if I was tested for atypical yeast infection. Next time I visit my Dr, I'm going to ask and maybe get tested. I know I had several tests which all proved negative. It has taken me several visits to the Dr and I have spent a lot of money with investigations, so I can feel everyones frustrations but dont give up keep pressing for an answer and see, if you can, a recommended specialist. I too believe that my Vulvodynia which started 12 months ago was triggered by an infection, but as to which one I still dont know... I'm suspecting yeast and bacterial. I'm also trying to concieve at present, so it will be interesting to see how everything goes, I just want one child, so I hope all goes well, Im a little concerned though given my past & current troubles. Has anyone had success with pregnancy after these symptoms in their 30's? Would love to know..
Commentm--i used elavil topically and it worked very well but only for awhile, then the pain came back. But it would definitely be a good thing to try, especially if you think that oral elavil is making at least some difference.
CommentThank you Margaret, Sue, Frank, and someone else who didn't leave a name:) Yes, I have tried lidocaine, but it created a swelling problem, so you can imagine how that just made things worse. Margaret, I, too, have a very hard time becoming aroused. My husband and I have what has become known as "fake sex" for us, but getting into it is just about impossible for me. My friend also suggested some sexy reading material, but I haven't tried it yet. I think it's also a guilt thing about not being able to have intercourse. Frank, I don't know how bad it is for your wife, but we have only had intercourse a handful of times in the past 8 years. I know my guilt about this runs deep, because I often have dreams of him leaving or cheating on me. I so appreciate your insight and thoughts, and my husband read it also. I think it helps him to know he is not the only man in the world going w/o. I will look into finding a pelvic floor specialist, and maybe try effexor......that's one I haven't been on. Also, I would be very interested to know how the acupuncture goes. My friend swears it makes almost everything better, so I'd be willing to try. Thanks again, Ann
CommentIt's been a while for me to post. I wish I had better news, but I have had a relapse. I will try to be brief. I had done well for a long time, but come January I had the ear infection that wouldn't go away. I was given antibiotics one after another and I cringed. At this time I was made by my DR. to switch birth control to one lower in estrogen.. For a week in each month, beginning in February, I would itch. Then I'd menstruate and it would disappear. I chalked it up to being hormonal and went on my way.I was given testosterone, then estrogen to try to illeviate this itch. I was able to see my GYN during the episode in early June.I had noticed a pattern and thought I was brilliant. He insisted on doing a biospy and since I hadn't had one in 3 years, I agreed. Unfortunately, he took a sample from my inner labia that was the size of a jelly belly jelly bean! It took almost 2 weeks for the result, of which I had to call 4 times to get. The result, no different from before:squamous cell hyperplasia, which is a rapid reproduction of cells in normal tissue. I was told that the tissue is thin and the nerves are close to the surface. Usually, steroids are given and the symptoms go away w/in 2 months. If it was only that easy. I gave a list of 8 steroids I'd been on before, more than half of which I couldn't tolerate. I received a call from the Drs. nurse after this list. She called to say that the Dr. was at a loss and has referred me to Vanderbuilt in Nashville. I go on the 6th of July. I was given 2 forms of lidocaine to use to numb the skin, but unfortunately, they resulted in what felt like chemical burns. In the past I had been able to tolerate lidocaine. It seems like now I am too senitive for anything. I am going into my 3rd week of constant itching of thr entire vulva. Atleast the burning has died down, although I am rather sore. The other day I could hardly pat myself dry with toilet paper, it was that bad. I have upped my Norpramin to 75 mgs a day, and I'm taking Atarax to help with the itching and to help me sleep, although I don't see it helping much. In the past few days it seems that the vulva is swollen. Insertion of a tampon, if needed would be impossible. The clitoris is unbelievably sensitive. I have forgone underwear. Dropped any form of soap. I've tried taking baths and I'm constantly using ice packs. This episode has left me discouraged. I am not able to function in my regular capacity, and this bothers me . I am miserable, uncomfortable and in pain. I feel like I'm left on my own until my appt. in 3 weeks. My husband is being supportive and helpful and is kind of cute when he brainstorms for ideas of the cause of this and what we can do to find me some comfort. We both believe that the biopsy played a part in shaking up the old demons. I tried to explain to my husband how this condition is a slow form of torture that interferes entirely too much. Not to get political or step on toes, but sometimes it feels like this is a lethal injection that just happens to take longer and be horrendously torturous. I will admit that I am down and I am also scared, but I'm trying to do what I can do. I'm scared to go to Vanderbuilt, but I know it is a good thing. I am just so tired of showing my vulva off and explaining my story. I always start out with, "Do you want the long version or the short version?" A few weeks ago I told my spouse that if I should pass away to put on my tomb stone, "She itched for 10 years waiting for a cure..." I really am trying to have a sense of humor about this. I've been sitting too long. I actually am having a few good moments, so I'm going to try to get outdoors. Take Care, all of my friends in this. Jennifer
CommentJusr had a a quick question about estrogen cream. Does it help with nerve related pain or only reduce irritation/tearing. I guess if it thickens your skin, your nerves aren't so close to the surface??
CommentHi everyone. I have not been here since 2000. At that point I had suffered from chronic vulvar burning (diagnosed as vulvodynia) for 6 years. It took me that long (6 years) to finally get to the point where I am now. After years and years of (so many different)antidepressants, biofeedback, cremes (oh my god, so many cremes), physical therapy, biopsies ... You name it, I did it. Finally out of sheer desperation I saw a chiropractor (after reading somebody's story about the treatment they, themselves had had ... Active Release Technique ... by their own chiropractor.) I had hurt my hip in 1993 (doing aerobics) ... the pain was not that bad and it subsided quickly ... I never thought it was this injury that could have caused my burning 'down there' beginning 6 months later. My chiropractor felt deep w/in my hip, masses of scar tissue .. that ran further into my abdomen ... and was convinced that all this scarring was trapping my nerves. Thus the burning. (My original post (after seeking help w/ my chiropractor, by the way is in the thirteenth guestbook) ... I just found it ...) Anyways ... at first I was very skeptical ... after being through all that I had been through ... Four years later, I see Dr. Gale on a regular basis.... I still have pain every once in a while ... I can recognize that 'twinge' and literally run to him for him to 'release' the nerves .... Sounds so simple ... It works for me ... I am asking any of you who are at your absolute wit's end, to think back ... were any of you injured ...? .... Have your alignment checked out by a chiropractor. Find one who does ART. I, by the way, was told that I had chronic yeast infections, chronic vaginitis, etc ... I have had absolutely not one bit of creme, antibiotic, nothing since seeing Dr. Gale ............. what was it all for? ..... All that crap I was putting down there was screwing around w/ my own flora ... of course .... I don't mean to preach. Honest, I don't. I just fell upon this site, like I said ... after years ... and I had the chance to read a few of the postings and my heart goes out to all of you. I just wanted to share my story ... and hope that it helps at least one more person.
CommentTo LAURYN: Have you ever heard of something called prolpase? Might be something you should look into. There is a lot of information on it at www.mybladdermd.com. Prolapse can cause the "heavy" sensation you are feeling down there. Anyhow, so after taking Effexor for over two weeks and getting up to the 75 dose for about 5 days I noticed my hair falling out in clumps. Sexual side effects were something I was willing to try and work through, but hair falling out is something I just cannot deal with. I am feeling extremely depressed and frustrated. I truly feel that my problem has a nerve component and that I need to find a medicine that effectively numbs my nerves but Neurontin, Elavil and Effexor really made no noticable difference in me. I am losing it... what other possible mediciation can I try? I feel like I'm never going to get better... The physical therapy can only fix part of the problem. What if nothing ever give me relief from the burning sensation caused by nerve irritation. I need help and support... anything anyone has to say would be much appreciated. I try so hard to be positive but every time I feel new hope with a new medicine, my hopes are just crushed when two weeks later nothing really changes.
CommentTo Ann: I hope you can still accept my honesty after you read this. My wife and I have been married over twenty years and up until five or so years ago we were having intercourse sometimes two or three times a day. Not every day but often enough to say it was normal for us. She did get yeast infections and occasional urinary tract infections probably from all the activity. Please don't think I am lying or bragging, that was normal for us and she had no problems until one day when she complained of pain. Several visits to the gyno and a closer look by me and the paper cut like tear was spotted. Since then she will get that recurrent tear if she move the wrong way or scratches herself or if we use positions during intercourse that put pressure on the area. To answer the question you asked, if we are not arguing about the kids, money or in-laws we can have intercourse every day or so. Now don't think I have a lot of nerve even posting here because she still gets the tear and raw skin and sex is a delicate act instead of a passionate event. I am certainly not the person to comment or suggest things regarding what you and your husband are going through. I am frustrated even though we have sex because it is not what it used to be and my wife is suffering from symptoms that have no cure. I have read here many times of women who are unable to have any sex for years and I honestly don't know what that would do to my marriage. I am so driven sexually that my current situation is frustrating and depressing. That may sound absurd but hormones and sex drive are powerful forces to deal with. I hope I did not insult you or anyone else who reads this and i sincerely hope you can get some resolve. Frank
CommentTo Frank: Are you so "driven sexually" that you wind up here reading about women's vulvas all day?
CommentTo The Inquiring Mind: Reading and posting here does nothing for me sexually and if it does so for you then you need help. I read and post here for a number of reasons first and foremost is to learn anything that may be of help to my wife's problem with the recurrent tear. Secondly is to share information that may be of help to someone new to the site. Lastly I offer the insight of a man who is not close minded or closed mouthed. I am sensitive but not afraid to speak my mind and answer any question that may help another. The mere thought that anything on this site that deals with a woman's personal pain could be thought of as sexually stimulating is sick. Is the mention of words like vulva, vagina, clitoris and penis reserved strickly for sexually provocative conversations? It's late, I'm tired and once again disappointed in my fellow human be it a man or woman who asked that dumb and rude question. Frank
CommentI was in disbelief when i read the disgusting comment from teh anoymous pussy who was too afraid to put his or her name. Frank is obviously a very caring husband, not many men in this world (even the doctors) care about a chronic pain like vulvodynia and it is touching that he so sincerely cares about his wife and other women who suffer from the same condition she does. If the anonymous person who wrote that is a woman suffering from vulvdoynia then i just don't understand what is going on in your head. The other (more plausible) option is that it's some pathetic loser who was looking for porn or something and the word "vagina" got a hit at this website. You are truly sad and pathetic.
CommentI am 19 years old and have had VVs for two years. I feel anger and frustration to those who can enjoy sex without feeling pain or crying afterwards. I hope this goes away soon. I love my boyfriend very much and cant wait till have sex all the time. I am so glad im not alone, i thought i was. Does anyone of anything to reduce the pain a little bit. At the moment i cant even attempt sex because its so tight and uncomfortable.
CommentI am 19 years old and have had VVs for two years. I feel anger and frustration to those who can enjoy sex without feeling pain or crying afterwards. I hope this goes away soon. I love my boyfriend very much and cant wait till have sex all the time. I am so glad im not alone, i thought i was. Does anyone of anything to reduce the pain a little bit. At the moment i cant even attempt sex because its so tight and uncomfortable.
CommentTo Amanda: Thanks for the support. Pain will make people do and say cruel things and there is still a lot of sexism at play on this site. I can understand some women thinking that I have no right here and that I must be some kind of pervert. That's not true but I understand it. Maybe if this was a different kind of site and the discussion was sexual not clinical my admissions would be less offensive. I will continue to read every couple of days but I won't post unless there is a specific question asked of me. I never posted here with the intention of causing added distress to women who are already in physical and emotional pain. My best to you all. Frank
CommentHello. Frank-I always found your words comforting. You lend support to those who can use some. Don't disappear on account of a few people who took this issue to a whole other dimension. And if you choose so, thank you for your help along the way. ......I am feeling a little better. I am moving around and most of the burning has subsided. I am starting to look forward to my appointment at Vanderbuilt next month. This is an issue where we need to stick together, not dissect and disrespect one another. It's true, pain is awful and can make us react in ways we normally wouldn't, but this should be kept as a place where we come together and work together to figure this out. To better days...
Commenti've had symptoms for almost two yrs. they are now mostly gone and last week, after l and one half yrs of celibacy i became sexual again with no pain! climaxing is impossible but that can be worked out i hope. we all have this for different reasons and to different degrees but young or old i beleive hormones play a part. i am postmeno but young women on the pill can have hormone imbalances too.improvement started for me when i took wendy's advice and started using threelac. eventually i think the vitamin c in it built up and caused problems with oxalates. soon after i contacted the vulvar pain foundation and had my oxalates tested. they were high. i started taking the timed calcium citrate and doing the low oxalate diet. i can eat some of those things now once in awhile with no problem. mostly i drink water and roiboss tea. i also went to a dr who tested my hormones and found my estrogen which should have measured anywhere from 150-550 whatever's i don't remember what . mine was below 15! she prescribed bioidentical hormones from a compounding pharmacy. read about these in suzanne somer's book,The Sexy Years. i had been taking synthetic hormones for a year to no avail. i also went to a physical therapist and found hip problems. i urge anyone who hasn't to consider contacting the vulvar pain foundation before you turn to drugs surgery and all. their therapies work. it may take a few months, less than 6 in my case or a yr or more but they can and have helped a lot of people. anyway just wanted to post a sucess story on here. keep trying. don't give up. something will work or a least work to get things under control. look up the web site for Women's international pharmacy i beleive it's called and they can give you information about dr's who will prescribe bioidentical hormones. if you read the book you'll have a better understanding as to why you need these hormones that are identical to the ones you body produces. enough from me. love and luck to everyone. reta
CommentTo Jennifer: Thanks for the kind words and best of luck. I suffer from herniated discs in my neck and back and intestinal adhesions, I have pain throughout the day and it makes me nasty at times. The drain on my mind and body dealing with the pain shortens my patience and I don't like that.I've talked to my wife about my desire for intimacy and I think in part it is because I'm in pain so often. Sex is a pleasant distraction for me in a day of pain. Although I'm in more pain afterwards. Well enough of that. Thanks again and by all means let's try and stick together for the greater good. If anything encourage your female and male relatives or friends to read this site. I always believed getting the word out is important in getting support and understanding. "Although this illness affects a woman's sexuality and relationships, it goes far beyond that one aspect. Frank
Commentpyomucalculposis sucks
CommentTo the ladies that emailed me with advice and support-- many thanks. You have no idea how much better you all make me feel. Tomorrow I have it out with Dr. G. about effexor. We'll see what the verdict is. On a side note, I am from the northern New Jersey area and have recently become involved with the NVA. There is a support group meeting in Wayne, NJ in July. Would anyone from the area be interested in attending? I was also trying to see if I could start one up closer to my area (Morris County). If there is anyone interested in attending a support group from this area let me know as well. Keep on keepin' on girls!
CommentKatie, I'm glad to see you are feeling better. I was just about to post an inspirational message, so I think I will anyway. I've had this problem for 11 or 12 years -- but in that time I've had 2 year periods with no pain, and longer periods with only a little pain or a yeast infection here and there. I've traveled to several countries, moved to Mexico, had lots of boyfriends and yes, lots of sex. Vulvodynia sucks but it doesn't have to be the end of life or happiness. And yes, sometimes I feel hopeless, but right now I feel hopeFUL because I have been feeling great for the past few weeks. So I think you will too. Hang in there.
CommentFrank -- Don't let whomever posted about you stop you! One of the initial suprises I have found since entering the world of V V is the shameful, in-your-face sexism I experience at every step of the way. My wife works, I don't, so I do all the research on V V. It is amazing how rude the "specialists", certain support groups, (including a rep from NVA) and others are when I call. Some laugh at me when I start asking questions! I cannot believe how many people there are that give no respect to the plight of BOTH people in relationships impacted by V V. Hang tough, believe me -- I know what you are going through -- we went from consistant sex to none in a very short period of time, and I don't feel ashamed about my needs playing a strong role in trying to find some sort of workable solution to this. Maybe this site could open a page or guest book for the men involved??? Thanks for letting me rant. JB
CommentTo J.B.: I agreew with everything you said and have gone through the same. Gynocologists want to keep that relationship between themselves and their patients exclusive, but as my wife's husband and partner I feel I have a right to ask questions and get answers. I don't want to turn this whole thing into what my needs and problems are, this site is for the women. I do think there is room for questions, opinions and perspectives from men who are involved with women who are suffering from vulvodynia. I hope this site continues to operate and allows women to understand they are not alone with this illness. I hope there will be better acceptance and understanding between men and women who are in this together. Thanks for speaking up. Frank
CommentFrank, Ditto, Ditto, and Ditto. I would stress that as a man, my interest isn't all centered around my end of V V. The women on this site are really going through something terrible, as evidenced by their very honest, gut wrenching posts. I would be a liar, though, to say that I can or will accept that at 40 years old, my sex life is over. Yet, the prevailing attitude of most with whom I discuss this issue is "Sorry about your luck, but you are a bad man if you complain about not having sex." WRONG! If I have to go to med school to better my odds of fixing this -- I will! My wife is one of the lucky one's, I guess. Her pain isn't noticable except when it comes to sex -- that's the only symptom she has. The open honest exchange of information is the best we have rightr now, and to automatically dismiss the men's opinions is not only wrong, it's just plain not smart as it limits the pool of knowledge. Perhaps, Frank, we could exchange e-mails. I fear that we will inevitably offend someone by ranting on the board! Take care --
CommentThanks aeb, we need all the inspiration we can get! I keep hoping for a remission to come my way. So I talked to Dr. G. today and he prescribed Cymbalta. This is an antidepressent that is also FDA approved to help nerve pain in people with diabetes. Sounds like something that might work. Who knows. Anyone have any expirience with it? I will let you know once I start it. I think I'm going to give myself a little break before jumping right into it, maybe a week or so.
CommentHi evry one. My dicharge are burning and irritate my skin. My all test are negative. I really don't know what to do. Did some one had that condition? Thank all of you.
CommentA fun thought... don't you think there should be some sort of vulvodynia spa some where? We could all go off there for like a month and get pampered, have physical therapy and massages and just take a break from the stresses of trying to make our lives work with this terrible disorder. I am imagining sitting poolside with a tropical drink spiked with Elavil... hehehe.
CommentTO Jennifer: I read your last post. I really relate to you. Everything you write about has happened to me. I wanted to tell you that my last (of many) biopsy that caused me a whole world of hurt. I had a flare up right after it and I chose not to use any topicals. I stayed on my Neurontin and dealt with it. Eventually, months later, the skin chilled out (my biopsy showed the exact same results as y\]ours). I too feel that sometimes the more I try to fix things, the worst I make them, so I think long and hard before I'm given a new treatment. As you may remember, I had a perineoplasty 5 weeks ago. Last week, I started with the burning and itching, using ice packs and determination to get through it. I'm hoping. I don't want to talk to my doctor about it now, because I feel like I have 2 options: 1 - I can have a biopsy and be miserable or 2- I can get cancer and go from there. I'm just going to hope it never gets that far. Just know, I relate.
CommentStacy-I have read that women who've had surgery to remove VIN have a really slim chance of getting vulvar cancer. And in the same breath-if women like you and me can't get our vulvas to calm down, the greater the chance we have that the squamous cell hyperplasia will continue to grow at an excessive rate, thus turning precancerous. What's a girl to do, you know? You and I and many other women have learned that sometimes, less is more. I do feel biopsies are a good tool to see what can be going on, but there has to be a way that it can be less intrusive. Your system has been through a lot in the last few weeks, unfortunately, it'll probably take a while for it to settle down. Do you think the Neurontin would help? Or is it more burning /itching than those nerve jabs? I feel like I'm getting stronger each day. This last bout came out of no where.(but that biopsy!) I went back and read my entries from May and I couldn't see this coming. Anyway, I am now menstruating and I feel a lot better. I had papercuts that developed over the weekend, but thankfully, they seem to have healed.I also think this is hormonal, as I can track its stages during the month, but no one wants to listen.Hopefully this speacialist will. I tried one more thing. I bought some vitamin e oil at GNC and have been putting it on my vulva. I waited until there was no burning, redness, soreness or fine tears. I'm using it to keep the skin supple. Maybe it will encourage normal growth. Maybe it'll help get the skin in better condition so those crazy cells will simmer down. So far, so good. I hope you feel better, as I do all of us on this crazy boat. It is sad that we have to endure this. What wonderfully powerful women we have to be. I don't wish this on anybody, but atleast I know there are women who can relate. Thanks.
CommentHello ladies: I wanted to tell you all that I started Acupuncture a few weeks ago for Vulvodynia and I hardly have burning anymore. The needles aren't painful either. I hope this will help someone else.
CommentTo S--when you get the acupuncture is it for pain in general or for a specific allergy. i had it done once and she did it with all these allergies and it didn't work but i have thought about having it done again.
CommentWhen I get Acupuncture, it's mainly for vulvar burning and pain, and today also for arthritis pain in my knees. It's helped me, but I'm afraid to believe that I'll have continued relief. I'm sure you all understand how that goes!!!!! I'm still surprised that she knows what Vulvodynia is!!!!!!
CommentI'm new on this site and have been reading so many of your comments that i find comfort in knowing there are people like me. All of us share this common factor, Vulvar discomfort to the point that it is emotionally, physically and mentally debilitating among other things. I have been trying herbal therapy for about 9 months now, using Boric Acid Vaginal suppositories self made with size #1 Gelatin Capsules, and Acidophilus Vaginal Suppositories same size #1 Gelatin Capsules. The Boric Acid can be purchased at the local pharmacy and the Acidophilus should be a powdered form from a good probiotic company; I use Natren or Flora Source for my acidophilus. Also Natren sells something called Gynatren, which are pre-made vaginal suppositories. Anyway, about 2 weeks ago i just stopped the Boric Acid suppositories and Acidophilus in an attempt to let my body try and fight on its own, WELL! THAT WAS A BIG MISTAKE I started again with this Vulvar lump i get on the clitoral hood. It swells, is red, and painfull and sometimes looks like a pimple with clear fluid, but the size of the bottom of a pin. Well this swelling started on Tuesday June14th, went to GYN he didn't have anything usefull, he assumes it to be related to the skene's gland; but i still had this pain. I've also been from doctor to doctor and nothing, some think it looks herpe's like, despite negatvie results, others don't have a thing they could say. Well, i decided to experiment again w/ BORIC ACID and inserted one intravaginally yesterday at about 7PM, Could you believe that 2 hours later the Cyst or inflamattion and soar was virtually GONE! I actually was able to walk to work today. Hearing some of the other stories of women being prescribed BORIC ACID and Nyastatin (which is an antifungal), leads me to belieave that my problem, like theirs is also Parasitic and related to Atypical yeast. While i know it works for me, i wanted to suggest to all of you looking and crying out for help. Buy Boric Acid (DO NOT EAT IT!) Boric Acid is poisonous when ingested. It is fine when inserted in the Vagina or as a topical agent on a Vaginal soar that hurts. Angela, please try this, I think that it might be worth a shot trying. I know how painful it is and how much it interferes with love, life, marriage TRUST ME! I too have cried day, after day, after day because the doctors don't know what it is. But I have been pain free for several months prior to this episode so i believe this is key in trying to get some type of relief until they come up with more research and providers with info on the disorder. Hope this helps, sorry it was so very long! Peace :)
CommentI use to post to the site many years ago. I have recently been in some pain and was wondering if anyone has had luck with clitoral pain. It is a very raw nerve kind of pain. I don't know if I should see a neurologist. I have been taking Elavil for a couple of years now. Started at 25mg and am currently at 80mg. I am wondering if I need to increase the meds because it seemed to be working for some time until recently. I have been stressed and have been trying to loose this extra 15 pounds I packed on from the meds but to no avail. It really is bringing me down. Any help would be great. Thanks
CommentI"ve also experienced the "pimple-like" lump on my area a couple of times in the past. But I chalked it up to a pimple on the nerve. I haven't tried Boric acid - does that help w/ your pain or just control the atypical yeast? I"ve been in a lot of burning pain lately, after 3 weeks of it almost being non-existent. I thought getting a bikini wax would be better for the summer than shaving w/ soap or shavinig cream .. instead I think I've stirred the bee hive. very discouraged this week..
CommentI bikini wax, not brazilian, without any pattern of trouble. NTS, now you have me wondering if at times it does cause trouble. Does anyone else have input on this - good or bad?
CommentIt was a regular bikini area wax .. it did hurt like hek so now I"m wondering if that triggered the nerves underneath to act up. Or, was it the powder she floured me with afterwards that went where it shouldn't have. I have no idea what flares my vulva up ... all i know is that it doesn't take much.
CommentIt was a regular bikini area wax .. it did hurt like hek so now I"m wondering if that triggered the nerves underneath to act up. Or, was it the powder she floured me with afterwards that went where it shouldn't have. I have no idea what flares my vulva up ... all i know is that it doesn't take much.
CommentI was diagnosed with VVS in November 2002 after an astute and caring OB/GYN nurse practitioner listened to my story and referred me to a vulvo-vaginal disorder specialist in Washington, DC. My doctor's diagnosis was that I suffered from "primary" VVS -- meaning that he believed my VVS was basically a birth defect. I did not seem to have developed VVS as a result of injury, disease, or chronic infection, and did not have the diffuse symptoms of vulvodynia which some women have in addition to their VVS. We discussed the options available and I opted to have surgery. Outpatient surgery -- with a scapel, not a laser -- under local anesthesia (although I was also sedated) was performed by my specialist at Johns Hopkins University Hospital in late January 2003 Recovery was uncomplicated. I was on total bed rest for the first week following the surgery, then partial bed rest for the next two weeks. I returned to work after about 3.5 weeks, although I could not sit entirely comfortably until about the 4th week following surgery. Prescribed pain pills, frequent baths, the use of a non-habit-forming daily stool softener, and occasional thin applications of vaseline helped with any itching and discomfort I experienced during the initial weeks after surgery. About 6 weeks after surgery, I began using vaginal dilators in graduated sizes to help gently stretch the vaginal opening, eventually working up to a dilator about 1.25 inches in diameter. I have recovered fully from my VVS and have not experienced a return of painful penetration. It took a bit of wrangling, but my insurance company paid 80% of all doctor visits -- the initial consult with the specialist was $900 -- 80% of the actual surgery, and all of my fees associated with my hospitalization. I cannot say enough positive things about my specialist and his practice and feel fortunate that I was referred to him. I also feel, from having participated in several online vulvodynia support groups, that my success was due to the specialization, education, and skills of my doctor; the fact that I did not have accompanying issues of vulvodynia; and the fact that my vestibulectomy was performed with a scapel and not a laser.
CommentHi, i am 23 years old and have been suffering from vulvodynia for the last 6 and a half years. if anyone have any advise as to how to treat the pain please let me know. thank you
CommentBelinda- I have been reading and posting for almost one year now. There are so many suggestions onthis guestbook that have been successful for different women. I would recommend that you spend time reading past post to see if there are any suggestions that you have yet to try. I too was diagnosed with vulvodynia last August and found tremendous help by seeing a MD in Los Altos CA by the name of Deborah Metzger. I began posting baout my experience with her in late December of late December of last year, beginning in guestbook 23. Good luck! Margaret
CommentTo those with the PIMPLE... ever think it could be herpes, HPV or moscullum contagious (sp)? I'm sure you've all been tested for everything under the sun, but if you haven't and you are positive for any of those things you could find help from medicines that treat them. There is no shame in having any one of those disease... for instance 73% of the female population test positive for herpes. Just a thought.
CommentI am recovering from vulvodynia, but have recently had an increase in discharge and air bubbles that come out of my vagina all day! The Dr. says all tests (yeast, STDs, etc) are negative and all is OK, but I know something is wrong! Has anyone else had this problem and, if so, what can I do?!?! Please email me or write back if you can help. Thanks so much, and good luck to all of you. I posted earlier about what helped me get rid of the pain.
CommentHas anyone ordered this cream from Dr. Glazer? If so, I'm curious to know how it's going?
CommentI used Neocutis cream for a short time before realizing that it was making my VV worse. It caused irritation and burning. But, it has helped other women.
CommentI used it last night for the first time, but woke up very red this morning. Does it get worse before it gets better? These women you are talking about, do you know of them personally, or are these the women that you and I read about from the study?
CommentRegarding the cream mentioned, I went to their internet site and copied the msds sheet. Many ingredients and for external use only. Contains Proplyene Glycol which seems to be a problem for women who suffer from vulvodynia. Please be careful. MSDS BIO-RESTORATIVE SKIN CREAM / Material Safety Data Sheet NEOCUTIS Bio-restorative Skin Cream Section 1 – Product and Company Identification Product Trade Name: NEOCUTIS Bio-restorative Skin Cream Distributor: Neocutis, Inc. 3053 Fillmore Street #140 San Francisco, California 94123 U.S.A. Telephone Number: 1-313-664-7546 (Detroit Office) Fax Number: 1-313-664-0668 (Detroit Office) Section 2 – Ingredients and Identity Information Ingredient Sequence Number Ingredient CAS Number RTECS Number z Water (Aqua) 7732-18-5 ZC0110000 2 Octyldodecanol 5333-42-6 JR4240000 3 Glyceryl Stearate 31566-31-1 RG1925000 4 Decyl Oleate 3687-46-5 5 Glycerin 56-81-5 MA8050000 6 Propylene Glycol 57-55-6 TY2000000 7 Wheat Germ Oil (Triticum Vulgare) 68990-07-8 RJ3725000 8 Stearic Acid 57-11-4 WI2800000 9 Cetyl Alcohol 36653-82-4 MM0225000 10 Ceteareth-20 68439-49-6 1004643CE 11 Myreth-3 Myristate 59686-68-9 12 Ceteareth-12 68439-49-6 1004643CE 13 Cetearyl Alcohol 67762-27-0 8005-44-5 1000001AL 14 Cetyl Palmitate 540-10-3 15 Tocopheryl Acetate 7695-91-2 GA8747000 16 Dimethicone 9006-65-9 63148-62-9 JJ6484500 17 Borage Seed Oil (Borago Officinalis) 84012-16-8 18 Carbomer, 9007-20-9 9003-01-4 AT4680000 19 Triethanolamine 102-71-6 KL9275000 20 Methylparaben 99-76-3 DH2450000 21 Propylparaben 94-13-3 DH2800000 22 Processed Skin Proteins (PSP™) No information found No information found 23 Glycosphingolipids No information found No information found 24 Phenoxyethanol 122-99-6 25 Disodium EDTA 139-33-3 AH4375000 26 BHT 128-37-0 GO7875000 27 Ethylparaben 120-47-8 DH2190000 28 Butylparaben 202-318-7 29 Methylisothiazolinone 2682-20-4 NX8157080 30 Methylchloroisothiazolinone 26172-55-4 NX8156850 Section
CommentI don't know any of the women personally. I guess we both read the same study. There's supposed to be a new formulation of Neocutis soon that won't have a couple of irritating ingredients. You can email them at www.neocutis.com and ask when it will be available. I'm going for Acupuncture and my burning is almost gone. Frank, thanks for listing the ingredients of Neocutis.
CommentDoes anybody know anything about systemic yeast? I have been having horrible pain for about twelve years and I'm wondering if this could be my problem. I've been doing some reading on it. I did take medication for acne (accutane--pretty much the strongest one) for about five months, and i took the pill for around six or seven months. I know that these things can contribute to a yeast problem. The only thing is that I had this pain for seven years before i took any antibiotic for acne or birth control pill. Is it possible to get systemic yeast without taking antibiotics or antying like that? If anybody has any advice I would really appreciate it.
CommentI wanted to thank everyone for this wonderful information. I have been on this questbook before but my last response was a few months ago. I recently read all the new comments. This is such a wonderful and helful website I don't know what I would do without such information. (Probably go crazy). Also, I wanted to say Thank You Frank for all of your honest feedback, insight, and information. It is wonderful to have a man's perspective. I have let my husband read your enteries and he can relate on so many levels. It was a shame the nasty comments you received. I know they were a little while ago but I was shocked at their degrading response to your insight. I find your remarks very helpful and uplifting. So please continue to respond on here as you see fit even when there is not a direct question aimed towards you. There are many others who think highly of you and did not appreciate those comments either. Lastly, Margaret thank you for all of your help. The web sites you gave where we can by the supplements is wonderful. In February or March I plan on flying out to Calf. to see Dr. Metzger. Your success and knowledge gives many of us hope. Thanks everyone!
CommentDoes anyone know if the test for HPV is through blood or culture? If both, is one more accurate than the other? Has anyone had any success in having an "a-typical" vaginal culture performed? The reason for this last question is because I have had 3 paps since March of this year and each one has come back negative. However, I wonder if an a-typical yeast culture may show something. I don't have the usual symptoms of a yeast infection but I do have the usual symptoms of vestibulitis. A local area of irritation that sometimes has a slight itch, rawness, & pain on Q-tip test. I just want to be sure it's not a different type of yeast infection. This has been going on since February this year. Thanks for the feedback.
CommentHello, I am new to this board and have noticed a common thread after reading many entries. Many have stated that your initial symptom was that of a yeast infection...has anyone ever considered the antibiotic taken prior to the start of the symptoms? Sometimes we take an antibiotic for something else and maybe a week or a month later we experience other symptoms and make no correlation. Or we assume that we got a yeast infection from an antibiotic and it just spirals from there...from the yeast. Maybe not the yeast. I would be interested to know how many had taken an antibiotic prior to the symptoms. I had an allergic reaction to an antibiotic and now am left with all these vulvar symptoms. Anyone else out there start their symptoms after taking an antibiotic??
CommentHas anyone experienced small sores/blisters that come and go? I've tested negative multiple times to any herpes virus or other stds--this includes biopsy. My doctor has been very thorough and patient trying to figure out what is wrong with me. I noticed when the vestibulitis and vulvodynia flare up, sometimes I have red areas with flat blisters/sores. Nothing ever happens; they don't ooze or anything--then they eventually go away. The pain doesn't go away--I pretty much have that all the time. I've taken somoeone's advice and started soaking in epsom salt, which does help. This has been going on for over a year, and I am very frustrated. Thanks for insight
CommentTo Sure V. & Husband: It's nice to know that my honesty and big mouth has been of some help. From going through this experience with my wife and being able to talk to other women who do not have vulvodynia I have learned a lot about relationships. I have known several women who have gone through divorce for example and although it is a fear and or concern among women with vulvodynia none of the women I am referring to mentioned anything related to sex as a cause. I just thought I would throw that in because although sex is important I have learned that it is rarely about you. The guys who cheated were just looking for something or someone else. I am directing my comments to all the women here, as many of you already know. I think about other women and my wife knows this because I tell her. Not that I have ever been unfaithful but because as committed as I am to our relationship I still have those thoughts. I think honesty is a good trait and I want the same from my wife. Hey love, if you are reading this and there is something on your mind please share it with me. Take care. Frank
Commentto Ma. Yes, I agree with you. I started with IC and I believe my IC was because of systemic yeast. I thought it was UTI and I keep on taking antibiotics. Weeks or even months after I develope vulvar pain. This has been on and of for the past 15 years. It comes and goes. I think when the yeast is so deep rooted in my tissues, cells and organs, it got worse and worse and never went away. Going to alternative doctors to kill yeast overgrowth in my body. I had to go into diflucan for 6 months. it did help but was not the cure. I took other natural supplements to kill yeast, and a lot of supplements to build up my immune system. I even had candida therapy immunization for two years. Still I was getting occassionally UTI. Only one try of antibiotics sets me back full time. What really helped me now is going to a holistic doctor who is one of a kind in New York City. He detoxed me enormously with very potent accupuncture as well as very potent herbal dry teas which I boil and simmer for an hour. I started treating with him May 2004 and to the present I am feeling great. When I started detoxing, lots and lots of junks from my vagina was coming out. mucosy, thick white cheesy stuff which makes me believe I had tons and tons of yeast in my cervix embedded in my vagina which also affected my urinary organ. I also did a lot of local treatment but from my other alternative doctor. I used boric acid, nystatin capsule and amphotericin douche for months and months. I am trying to rebuild my tissues by taking natural antiinflammatories, like catrsclaw. aloe vera, olive lead, grapefruit seed extract, coconut oil, apple cider vinegar, garlic and lots and lots of probiotics to reblance my gut. I know I have to cure my intestines and cleanse my blood as well as build up my immune system to fight this infection and prevent it from coming back. Having this for 15 years, it takes a long, long time to get rid of too. As of this month, I have completed 3 years of treament, much. much improved, but is looking to cure myself 100%. I would like my life back completely. I will not settle for less. I honestly believe that YEAST is a culprit of this disease. Unfortunately and it is very sad, it is very difficult to get rid of and you need and very, good holistic or natural dpctor who is knowledgeable on how the body works, who knows how to detox, rebuld, and strengthen your immune system. This is just my thought. Years ago, I thought yeast was non existence health problem. I refuse to believe it. Now I believe it is the culprit not only for IC and vulvodynia but numerous health problems. Yeast causes inflammation,. blockages, eats up our tissues that it disturbs our connecting nerves. Unless we get rid of the overgrowth and strengthen our immune system, we will never completely recover. We may get and feel better someday, but eventually it comes back again. Detox completely. Reduce the overgrowth. This is just my experience. Readers of this guestbook are free to believe and disregard my above comments.
CommentHas anyone had experience with candida immunotherapy (ie desensitizing shots/drops). I would be interested in hearing about it.
CommentFrank-Thanks for the response. Your honesty has helped me and many other tremendously. I'm glad to see your still responding here as I'm sure many others are. LISA-I do know of a woman who has gone through candida shots now for 2 yrs. She was diagnosed as having a candida allergy via blood from an Allergist apt This particular allergisst specializes in Candida Allergies. There is a wide range of this type of allergy. Some have a mild allergy and some severe. I actually went to the same allergist, had the same blood test, and am not allergic to candida. So the shots would be of no help in my case. However, the woman who did receive treatment has improved significantly. She said the 1st yr. was difficult as she exposed her body to the candida and this past yr. has been much better. She still has flare ups but is feeling general improvement. I shoud also preface by saying she is a pretty significant case. She would develop a severe yeast infection from simply sitting outside in hot weather and sweating. This followed after many times on antibiotics for various aliments over the yrs. I hope this helps. I would strongly suggest you find an allergist who specializes in candida or an allergist who is willing to be open for such a blood test. I would also ask the Dr. to simultaneously run a test for common food allergies (ie. soy, eggs, dairy, etc). If someone has been exposed to candida systemically they are at a greater risk or developing these allergies due to the yeast overgrowth. JENNY-Does your natural Dr. know of anyone (like himself) in the chicago area who can help with yeast overgrowth? This would be extremely helpful. Thanks
CommentDoes anyone know if ingesting probiotics daily including the day of a culture for yeast infection and atypical yeast infection can cause a negative result when in fact there is an actual infection? This is my scenario. Today I forgot and took my probiotics this morning @6:45am and I will proably receive a culture about 8-8:30pm tonight. I don't have the typical signs of an active yeast infection but I do have vestibulitis. I wonder if some of my symptoms of vestibulitis are also indicative of a yeast infection of some sort. I would hate my culture to come back negative when in fact something is going on. Any feedback would be appreciated. Thanks,
CommentSue- My HPV came back positive after a biopsy of atypical calls were found on a pap. I then had it DNA tested. Take care! Margaret
CommentLisa- I have been undergoing Immunotherapy for Candida since January of this year. I see Dr. Metzger in Los Altos Califorinia. Go to www.harmonywomenshealth.com, ThenClick on Medical Articles, Then Click Display articles from- Harmony Women's Health, Then click on Vulvodynia, Allergies- Hormone and Candida, Immunotherapy, as well as Sugar in Diet. Please feel free to e-mail me to ask me more questions. Maragret margaretmelkins@msn.com.
CommentI would like to know if anyone has seen Dr. Monica Peacocke and if she has helped you. I just went to see her this past week. I am not diagnosed as having v.v. but I have been suffering from chronic yeast infections for 7 years and no one has been able to help me. Dr. peacocke told me that she believes I have a vitamin D deficiency and I just did a blood test to determine if that is correct. Please if anyone has seen her and can give me information if she is for real or a "quack" I would appreciate. She doesn't take insurance and it is costing me a pretty penny to see her. Thanks
CommentMARGARET--Thank you for your information regarding HPV. It will help with my appt. tonight. STACEY-- I know nothing about Vt. D deficiency relating to chronic yeast infections or VV. I have had my Vt. D levels tested and they are completely normal. I also have suffered from chronic yeast infections in the past and now have vestibulitis. What is her reasoning that Vt. D deficiency causes yeast infections or VV? I'll pass on my story and hope it helps you and others. I was in a similar situation as you with chronic yeast infections for about 1 1/2-2yrs. I would develop an infection every 3-5 weeks. It was horrible and I would not wish it on my worst enemy. The infections were extremely intense and left me miserable. After continued treatment with my OB who said I was normal after each infection was gone I finally found a Dr. who treated women such as myself. Now... he never examined me or did any cultures. What he did do was a stool analysis. This checked my levels of both good bacteria and bad bacteria in my intestines. Not surprisingly I had "0" good bacteria and a ton a bad bacteria. He said I was significantly imbalanced in my intestines which would surface every few weeks as a yeast infection. He treated me with a 3 prong approach. 1) I went on the candida diet (basically eating protein and vegtables) for minimum of 60 days. 2)I took probiotics 3 times a day. These probiotics I ordered from the same lab he did. They contained 30 billion live/active good bacteria in each capsule. The probiotics needed to be refrigerated. 3)I went on diflucan daily for 60 days. The last 30 days I added oral nystatin. This approach did stop my infections. I also continued watching my diet very carefully from that point forward for yrs until I became pregnant and simply could not tolerate many meats, eggs, vegtables etc due to being sick to my stomach. I did regretfully find out that Diflucan when taken in high doses can harm not only one's liver but bones as well. It can cause our bones to not absorb CA+ properly. In addition, the Atkin's type diet changes the acidity of our bodies which also causes bones to lose CA+. I hope this information helps. It's hard because I feel women in our situation have to sometimes choose the lesser of the 2 evils which is for us to determine. If you need any more help please feel free to e-mail me. I hope things improve for you soon. Once you find the right Dr. they will. Good luck!
CommentFor Stacey and Sue V. If you read my story above here are the facts I discovered through my healing, Systemic yeast is very difficult to get rid of. Even though you take diflucan for years it will not completely help for there will be a point when they are resistent. Building your immune system will not work unless you do cleansing and detoxification. Immunotherapy will help you build up your immune system on candida but it will not detox you from yeast if you have it systemically. I went to all the best the doctor in New York. It caused me an arm and a leg. But I am sooo much better and am very happy. I had multiple problems: IC, Vulvodynia, Fibromygia, Bronchitis, sinus, bloating, depression etc. I first went to see Dr. Leo Galland who is an alternative doctor, he helped me by monitoring me with diflucan for 6 months, also he gave me some supplements for my immune system. They helped but not completely, then I went to Dr. Teich in New York, he is an environmental allergist. I had candida shots and other kinds of molds for 2 yeaars. It helped but not completely. I was stilll bad, until I saw Ken Lucas Kobasyahi in Manhattan, who is a holistic healer by accupuncture and chinese herbs. I was seeing him everyweek, and he is not covered by my insurance. I felt from that the start that his treatment is the right way. He works on the whole body. We have to realized that systemic yeast get embedded in our organs and tissues. Yeast can blocked our meridiens and then the toxins lodges in our organs. His accupuncture hits the meridiean very strongly that it pushes the toxins. then his herbs pushes it more and nourishes the organs. He believes that the most important detoxification organs are our kidney, and liver and our intestines is the center of our immune system. Imbalance in the intestines can cause all these problems. Once all this are functioning properly, all diseases can be cured. I know that he was helping me a lot, my worst problem was by vulva and bladder. Though now I believe that my Interstitial Cystitis was also caused by systemic yeast which started from the vulva and cervix. If I recall, I had symtpoms years and years ago, though the come and go of which I did not give any importance. I was always getting different infections. taking loads of antibiotics, which lead me to lowering more my immune system and gave yeast the opportunity to take over my body. Also, I was a sugar addict, a lot of stress. etc. Detoxing is not easy task, you get much, much worst until you get better. I tolerated all this because I know I get better afterwards. I still see him for maintenance, because I want to really bring my immune system to proper functioning so this does not come back. I do not take any sorts of drug at all. Drugs can just add more toxins to your body. Modern doctor gives drugs just to mask the symptom, not knowing the root of the problems. Also the more you take drugs whatever kind, it gives burden to your liver and liver congestion can make it harder to detoxify. I only take herbs. Herbs from him and other nutritional herbs proven to help the body( most of which I mentioned above) My suggestions to all of you is that do not depend on doctors too much especially modern doctors. They can only give you advices and drugs, not the cure. Learn and study yourself. Only you can help yourself. Be dettermined to get well. Your health is your priority. There comes a time when it is so expensive especially holistic healing, but hey to live a normal life is better than money. Sue V. No I do not know anyone in Chicago. I live in New York city and the doctors I mentioned above are the best doctors if you believe you have systemic yeast. If you have to chose one, Ken Lucas Kobayashi is the choice. He is acturally semi retired, but he takes patients occassionally. If you want more information, please feel free to e-mail me. Goodluck to all
CommentTo Stacey: I remember reading a few guestbooks back that one or two ladies were not too happy with dr. peacocke. Something about not accepting insurance and very expensive visit to do basic tests. My wife saw dr. benson horowitz " the expert" on vulvodynia a few years ago and it was the same thing vaginal smear and under the microscope to confirm yeast, prescribed Elivil to calm nerve endings come back for more visits, blah blah blah $300 plus dollars and no resolve. These experts may hit upon some condition your gyno has not but when it comes to vulvodynia there is to my understanding no cause and no CURE so far. I think it is fair and reasonable to claim treatment for symptoms but cruel to claim a CURE. To not accept insurance and charge more than $100 dollars for a 15 minute office visit should be criminal. Many of us have and use insurance because we need the help, these experts are taking advantage and curing nothing. I am angry, sorry. The last expert my wife saw charged her a couple hundred dollars we could not afford for his brand of supplement that would calm the inflamation causing the tearing and all that. He made money and my wife still suffers. They should offer a money back guarantee is they are so competent and expert. Speak up ladies.
CommentTo Frank. To culture yeast in the vaginal is hard especially if it is systemic. It is in the blood. Also most of it is so deep rooted in our tissues that nothing obvious is seen. There are a lot of books about yeast. If I were you sufferers, to test yourself if you have yeast, if you find a good doctor to moniotor you with an antifungal drug for a least 6 months, find a doctor who does immunotherapy, work on your diet, no sugar no carb. Take a lot of probiotics. if possible, have an amphotericin douche done by a compounder. Douche with it for one month, insert probiotics in your vagina as well as take it orally. Take a lot of things for your immune system: olive lead extract, aloe vera, coconut oil, colustrum, garlic, etc. In a month or two months if you feel better then BINGO you know that it is yeast. Then you do not stop there, there are more and more things to do. Read about detoxing. Go for accunpuncture, accupressure or reflexology, search for a good herbalist who knows what he is doing. For diet, read the body Ecology diet, join the candida forum: www.healthyawareness.com. There are a lot of good info in here. Holistic healing don't accept insurance. The two doctors in NY: Dr. Galland and Dr. Teich are very, very expensive, you pay first then you send it yourself to your insurance. Ken charges $180 for accupuncture and I pay $240 for 8 days supply of tea. When I was really bad, I have accupuncture twice a month and tea twice a month. So everyweek I was seeing him. Now I have 1 accupuncture and 1 set of tea every month for maintenance, though I have improved a lot even my sinus has drained enormously as well. When I had vulvodynia.the more I detoxed, even when I was taking diflucan, I burned and burned more, then it eventually got better and better. I do not take diflucan anymore. I am just taking natural remedies and I have no problems whatsoever.
CommentHas anyone experienced small sores/blisters that come and go? I don't even know if I would really call them blisters. I've tested negative multiple times to any herpes virus or other stds--this includes biopsy. My doctor has been very thorough and patient trying to figure out what is wrong with me. I noticed when the vestibulitis and vulvodynia flare up, sometimes I have red areas with flat blisters/sores. Nothing ever happens; they don't ooze or anything--then they eventually go away. The pain doesn't go away--I pretty much have that all the time. I've taken somoeone's advice and started soaking in epsom salt, which does help. This has been going on for over a year, and I am very frustrated. Thanks for insight. Since I hadn't heard anything, I figured I'd post again. Thanks.
CommentMAA-I have never heard of this. I'm so sorry that things aren't adding up. It is extremely frustrating when you know something is not right but there is no answer. Keep seeing Drs because at some point you will receive an answer and the correct one. Also, I just wanted to respond about the atypical yeast issue we've been reading/talking about. I just had an OB apt this evening. I did ask him if he would culture for atypical yeast versus the usual culture. His response was that when a culture is taken it is put in the lab and left to grow. What ever yeast is there "typical or atypical" grows and that is the result. Thus, if a culture is done and it comes back negative then there is no abnormal amounts of yeast whether typical or atypical. I don't know if various labs do cultures differently but I thought this was interesting. Any feedback would be appreciated. Thanks in advance for your insight.
CommentMAA - My mother had something similar. She said for a long time they were sometimes almost like little whiteheads, and then they stopped coming to a head and were red sores. Her gyno told her they were little irritated cysts (benign). He prescribed "Nystatin and Triamcinolone Acetonide Cream" and it cleared up. Hope this helps.
CommentMAA -- also, if its not herpes, perhaps it could be shingles. I had a Dr. suggest that to me since I tested negative for herpes but had a very "herpes-like" event which triggerd all of this for me. The Dr. told me you can have a shingles outbreak anywhere on your body, but that you will only test positive during an outbreak. Next time you break out maybe ask you Dr. to test you for herpes zoster (aka shingles). Also, I have read about one type of vulvodynia that produces red patches that are sensitive to touch. I don't know much else about that though.
Commenti was just diagnosed with vestibular adentits yesterday. I am in my early 20's and have been experiencing symptoms for a year now. My symptoms sound similar to others that have written. Mine include pain during intercourse, swollen labia, after incourse it feels sore and burns. In addition I have been getting broken skin on the labia with no pain or itching. I was scared to go to the doctor because i wasn't sure what it was. Has any one else gotten a cut like symptom that goes away in a day or two? These sypmtoms only occur after sex mostly before or after my period. It does not seem to affect my everday life... is it supposed to get worse as you get older? I was prescribed xylocaine but have not tried it yet any feed back? I just found this website and am interested because i was so scared to go to the doctor due to the open cut i got every month around my period and now that i know what it is I am not scared but curious as I never knew this condition existed
CommentI have a question regarding biofeedback. I have been doing it for a few weeks and have seen no improvement. has anybody out there tried this, and if so how long did it take you to see any improvement at all?
CommentHello: I have not yet tried the NEOCUTIS Cream but I understand that it is working for people. However, I have read some postings about people turning read with use. I took the liberty of writing the company and heard back from the Scientific Officer there. Here is what he wrote: Dear Cheryl, We recently met with the gynecologist leading VVS study in Lausanne, Switzerland and he provided us (together with a previously sent e-mail to me) with the following information, which may help to answer the question regarding tolerability of the cream for “sensitized” women. On his first exam, he evaluates the presence of an unbalance immunity of the vagina meaning an allergy-like reaction with production of histamine. He is looking for a diffuse erythema of the vulva (which is not corresponding to the usual criteria of the diagnosis of VVS). If he suspects an allergy component, he prescribes oral anti-histamine twice a day for 10 days. A topical anti-histamine preparation is not recommended since it might additionally perturb the sensitized vulvar skin. For these cases; in case the VVS diagnosis was confirmed, the doctor uses Neocutis cream only after this treatment. This regimen may have allowed limiting occurrence of side-effects such as increased redness of previously sensitized vulvar skin. He, as well as another doctor at another study center in Switzerland, never observed any side-effects with the cream although several women with history of sensitization are included. The cream is well tolerated and an eventual erythema disappeared or diminished after cream use. In addition, the cases of T.C. as well as S.S. could be used as example to answer. TC seemed initially not to tolerate cream, but seemed to tolerate it afterwards. SS, a difficult case, seems to tolerate cream. I hope you find this information. Additionally, someone else added to the e-mail Plus… During the first 10 to15 applications you may feel some tingle sensation witch disappear after 10 minutes. Be careful it is VVS and that there is no infection at all. Obviously the Neocutis cream has no anti microbial or and fungal properties. Hope this info helps. Cheryl S. .
CommentThanks everyone for the responses RE: sores/blisters. My doctor prescribed me triamcinolone acetonide cream to try, but I've been terrified since everything I use creates more pain. And I've experienced tearing before, and I didn't want to do anything to thin the skin. I don't even know if it is fair to say I develop sores or blisters, but under a magnified lens, it looks like there could be something like that. Thanks again for the feedback. My vulvodynia and vestibulitis have been going on for over a year. Thanks again...
CommentTo Jenny: I thought your post was very thorough and informative. I agree that many things contribute to overgrowth of yeast, different strains of yeast and the confusion between yeast and bacterial infection. I think that for years my wife had problems with yeast because we have vaginal sex too often. I read a couple of years ago on a Women's Health Site that semen can upset the ph balance of the vagina, so imagine having vaginal sex three times a day and throwing that delicate balance off. We have vaginal sex every few days now and the occurance of yeast infections is extremely rare. My wife does get urinary tract infections every few months. I don't want anyone to think I am bragging about the frequency of our sex life in the past or that I was some kind of a sex freek, that was just how my wife and I were and I believe it caused problems. I would still like to know what caused the skin to thin and tear? Not knowing really bothers me for several reasons, aside from the obvious which is my wife's pain there is my selfish pleasure and more importantly the future sex health and sex life of our daughters. I never got an answer as to what was changing in that area of the vulva tissue to cause it to thin and tear. Certainly some competent doctor could examine the tissue and determine what is going on. This is not an isolated event, many women here complain of tears to the skin of the vulva, clitoris and labia. Something is causing this to happen and whether it is genetic or autoimmune or whatever, knowing would be of help. Sorry to rant. Good night, Frank.
CommentTo Frank i myself has a similar situation. Thinning and tear especially after sex. Gynecologist always suggest estrogen. My holistic doctors are so much against it if they believe you have overgrowth of yeast and vaginal yeast. Hormones feed the yeast tremendously. It will make it worse. Cortisone does the same thing. I refused to use any of these two things. As you know when you have yeast, everything dries up. Imagine people who have yeast on their skin, they develop eczema and the skin really gets very dry, your face gets dry your hair scalp gets dry. It makes me think that yeast does this. Have you seen someone with fungus nails on their hand or toes. fungus eats up the tissue, nail and the nail become very brittle. it is the same thing with anypart of the part that is infected with yeast. I believe that once you cure it or diminish the overgrowth, the tissue and skin will heal once again. I know someone who developed fungus nail and the fungus ate up the whole nail. When it was cured, the nail became nice and shiny again. It is the same concept with the vulva. It takes time though. Months and months even years to get better. During my healing, I have refused to have sex. I told my boyfriend, I rather he leaves me than I suffer. It is very painful. In the beginning I wanted to please him and of course I got worried that he was going to leave me. But as I was getting better, I still refuse to have sex, unless I believe in my heart that I am completely capable to do so. The pain, and UTIS are not worth it for me anymore as the suffering left a very traumatic experience for me. But now I can see a lot of difference. Now that I am getting better, I do not feel so dry anymore, but I am giving it some more months to heal completely. I am menopausal too. My holistic doctor told me that once my body regains balance, all will be normal and my hormones will automatically balances. He does not believe in HRT therapy. My other alternative doctors who I mentiioned above, are medical doctors but treats a lot of people with systemic yeast. They said the same thing that hormones, even the natural one feed the yeast, especially with woman who has overgrowth. Now if you do not have overgrowth of yeast, you can tolerate it. Again,. i do not put anything in my vagina, except coconut oil to moisturize it, I do not take any drugs at all. I agree with you, it is a mysterious disease and makes you believe there is not cure. There is a cure, but the cure takes a long, long time and it requires commitment, patience, time and most of all money and of course luck that you find a good doctor who understands the problem not to make money on you or bombard you with drugs just to make the problem worse in time. I understand your problem though, how to solve your sexual desire. I do not blame you. All men do have tremendous needs. This is for yourself to solve and to discuss with your wife. But I advice you, please be considerate to your wife, as I know her pain and suffering. My boyfriend was so kind to me, that he never forced me to have sex. This peace of mind gave me less stress and contributed a lot to my healing. I hope and pray that things get better for your wife so that will solve your problems as well. Also, I agree with the semen changing the Ph. of the vagina. The ph. of the semen I was told makes the yeast grow. If you have yeast, your are also more susceptibe to UTIs as well.
CommentHi. I have just discovered this site and I think it is great. It actually makes me feel not as alone as I thought. For the past 7 years of my life I have been suffering from supposedly chronic yeast infections. This all started after I was on heavy antibotics for strep and bronchitis and after I had unprotected sex with a one night stand. When problems first came about I was very itchy and red and swollen. I was told that I had strep b down there, a bacterial infection and yeast. As the years have gone by I have been told that I have a chronic yeast infection. My symptoms have changed throughout the years. It was much worse the first 2 yrs. Now my symptoms consist of dryness, itchiness, irritation. The only time I burn and get inflamed is right after sex. I dont hurt during sex, but once I orgasm, if my boyfriend doesn't orgasm within like 2 minutes I start getting really dry and it will hurt. Right after sex when I urinate it burns and I am very red down there but it usually subsides within 20 min, but then the next day I am a little itchy and then the day after that I have a flare up. When I am flared up that is when my discharge is white and milky. There is not a day in my life though in which I am not bothered down there. I have been to numerous ob/gyns I have seen dr. ledger in the city and he tested me for v v but it came back neg. I have been to an acupuncturist, tried the yeast/carb free diet and been on every antifungal/cream imagined. Everytime I go to the gyno they tell me they see yeast under the microscope and then the culture comes back neg, My gyno now has me on boric acid (which I have always found the most helpful) and diflucan both once a week. And now I just started seeing Dr. Peacocke in NYC (who my gyno recommended) who is taking a totally different approach then before. She is telling me that this problem probably stems down from when I had a slight eating disorder in High School and that I'm probably vitamin D deficient. I would like to know if anyone else is like me in which we don't really have pain down there but discomfort and itchiness. This problem has effected my everyday life ( I don't even wear underwear anymore b/c it irritates me) and I can't workout anymore cause it makes me itchy and my sex life for a 27 yr. old is slowly disappearing. Please someone out there please help!!
CommentInteresting story --- my grandmother apparantly had some kind of choric vulvar burning problem in her youth the never responded to anything the doctor gave her. One day she said she "cured herself" by buying a big tub of plain, unflavored yogurt, eating a whole bunch of it an applying it to her vagina. After that she was better. Weird right?!
CommentI have similar issues as you Melissa, but I've never been checked for Vitamin D Deficiency, or strep. My yeast always comes back negative, but I have the milky discharge as well. I have tested positive for the vulvular vestibulitis (Q-tip test). Do you or anyone, ever have white patches on the insides of your mouth/cheeks or lips that correspond with the start of your vestibulitis. I develop white patches inside my mouth, that I have never had before until my vestibulitis issues began. I only started noticing the white patches about a year into this, but that doesn't mean they weren't there all along. The skin inside my mouth turns white in different areas, and looks like the skin will peel right off--but it doesn't. Then it clears up later. I have yet to see anything like this on my vulva, but It does seem to correspond with my issues "down there." Thanks for any help!!
CommentI"ve been going to PT now for 1 month and found a remarkable improvement in my pain. She's incredibly informative and is the only person who has been able to help me w/ VV. No meds have worked and she explained no meds will work. If you haven't investigated the PT route, I would highly recommend it. My VV also began after a yeast/bacteria infections.
Commentmelissa. im 21 and suffer from vulval vestubulitis. when i was about 14 i had a, well not an eating disorder but a problem where i cudnt swallow food and hadnt been able to properly for years, it wasnt until i was nearly starving to death the problem got fixed.so my nutrition wasnt its best when i was younger. you mentioning your eating disorder and the vitamin d makes me wonder if theres a link.....doesnt really change the situation im in now but its a theory!
CommentTo those of you who have seen Dr. Peacocke and her so-called vitamin D deficiency...has she explained WHY you have VV and how being deficient in vitamin D supposedly causes this. I'm very curious. There was a women a month or so ago, that said she was beginning treatments with Dr. Peacocke...how are they working for yoiu? Did Dr. Peacocke ever explain her theory and if so, than can you please share this with us. It seems that everyone who goes to this doctor has a vitamin D deficiency...sounds a little weird, no?
CommentTo those of you who have seen Dr. Peacocke and her so-called vitamin D deficiency...has she explained WHY you have VV and how being deficient in vitamin D supposedly causes this. I'm very curious. There was a women a month or so ago, that said she was beginning treatments with Dr. Peacocke...how are they working for yoiu? Did Dr. Peacocke ever explain her theory and if so, than can you please share this with us. It seems that everyone who goes to this doctor has a vitamin D deficiency...sounds a little weird, no?
CommentI do have to admit that it does seem like Dr. Peacocke is trying to pin all of this on vitamin d. I am being treated by her, but I do find a lot of what she said to be very interesting and it totally applies to my situation. My treatment is going ok. During the mid part of my cycle I feel much better and intercourse is more enjoyable. I am able to exercise without any issues as well. I am however not feeling so great during my period (as well as the week leading up to it). I am not going to give up on this until I have given it my all. I have tried almost everything else with no success. Dr. Peacocke feels that my body is absorbing the proper amount of calcium, but leaking out somewhere, probably my colon. Without the proper amount of calcium the vitamin d is too low. There are other symptms that I have that are indicators of this. This could be a bunch of bs, or it could be the start of a cure.You can not know until you try it. There are times where I feel like I just can not take it anymore, I just want my old life back. To Melissa, Your symptoms are very similar to mine. I have found that the only tolerable way to have intercourse is to use olive oil as a lubricant. If you have to, keep applying it throughout. Good luck, I hope some of my information can help.If anyone knows of someone that has been treated by Dr. Peacock I would love to hear about it.
CommentHi ladies, are there any vegetarians out there trying the yeast free diet? I am going out of my mind here because i don't know what to do. i am not a vegetarian for moral or religious reasons but simply because meat repulses me. I have tried eating it but always gag and am never able to eat more than a few bites. are there any foods good for the diet besides meat? i think this is the only answer ot my problem so i am at my wit's end. please, PLEASE if anybody has any advice for a vegetarian trying to do this diet please write back.
CommentPerson w/White patches in mouth- I too have expereinced white patches like you described that coincide with vaginal itchiness and bunring. I went to my doc who confirmed it was yeast. My guess is you have systemic yeast. My MD had me try an alternative treatment because at the time I had been on Diflucan with no success. I rinsed with it as well as inserted it vaginally at night. It is called Argentyn 23. It is a form of purified collidial silver. My white patches disappeared in 5 days and my vulva felt wonderful in 3 days. I continue to treat my system infection with Caprin ad Uva Ursi, both with great success. If you are interested in more details please feel free to e-mail me at margaretmelkins@msn.com.
CommentMelissa- I too experienced burning with intercourse, with irrtation, swelling after. My PT gave me some great suggestions that have been wonderful. After you orgasm stop intercourse. I know this means mixing things up a bit, but it really helps. When there has been trauma or infection to tissue your body naturally send blood to the tissue. So when you have an orgasm blood which naturally pools in the genital area does not leave, something called pelvic congestion. After I orgasm I do a series of kegals and pelvic floor exercises that help me pump the blood out of the genital tissue. This has been amazing for me. My husband and I have had to mix things up a bit, but by following this suggestion my tissue is less irritated and then I am able to have intercourse again sooner. Good luck Margaret
CommentSome of you asked me to let you know how my surgery went. As a last option, I had a perineoplasty 7 weeks ago for a forever unhealing tear. I am finally back to my normal routine of life and have been for 2 weeks or so. I have had no tearing, mild discomfort with sex (compared to unbearable pain), and I'm not taking/using any meds. I'm told the discomfort w/ sex should diminish over time as I am still a fairly fresh post-op. So far, so good, but who knows, next week could be hell!
Commentfor the woman who is seeing dr. peacocke: How long have you been seeing her for? What medicines has she put you on? I'm just curious. I have only seen her once so far and I will see her again next week to get the results of my blood test and urine test. As far as I'm concerned she is taking an approach that no one else has taken before. Some people say she has helped and others say she hasn't. I will try anything I'm so desperate. What other doctors have you seen in the NYC area? Where are you from? Thanks
CommentHas anyone on this site ever seen Dr. Elizabeth G. Stewart...the auther of the V book?
CommentTo Melny29, I have seen Dr. Peacocke three times since the end of April. She ran all of the blood and urine tests and reviewed the results with me. According to her, my vitamin d levels were too low. The levels were not below the labratories criteria, but too low to keep my vaginal area balanced. She checks the vaginal cultures against the blood work to support her beliefs. According to her she can tell by the consistency of the secretions if there is a problem, she backs this up by blood work. Because everyone is different they may need different levels of vitamin d to make them feel better. She has me on perscription stregnth vitamin d as well as calcium with vitamin d. I must say that I noticed an improvement right away, but then I got my period and I felt like I slid backwards. I saw her shortly after that and she was very pleased with my cultures. I am feeling better except for the week leading up to my period and the week of my period. I have also stopped having flair ups of itching and swelling. I am going to give this thing some time because during the middle of my cycle I feel pretty great and that is a major improvement from before I started seeing her. This is not a quick fix, I am going for my second round of blood work this week and I will see her again next week. I agree with you, no one else has looked into this and because she has not published these findings people are skeptical. Like I said before this could either be a bunch of bull of the start of a cure. I am very tired of all of the doctors, the tests, the experiments, etc. I know that she is expensive, but her practices of not taking insurance are not unusual. Many of the doctors that I have seen do not take insurance and I have seen many. Dr. Rodke, Dr. Ledger, Dr. Glazer, Dr. Goldstein just to name a few. I live in northern NJ and have been battling this for about 15years. I would be afraid to add up the dollars that I have spent trying to get rid of this. I will tell you one thing though, no doctor has hit the nail on the head the way that Dr. Peacocke has. She has described problems and symptoms that I have had since I was a teenager. She feels that they are all connected. I am really hoping that she is right. Feel free to e-mail me with any comments or questions.
CommentCould you please post Dr. Peacock's Number and address please?
CommentUpdate: My wife took one of the GNC products that was supposed to gently cleanse her system. I can't for the life of me remember what it was, but she got violently ill -- coming out of both ends for 48 hours. So that was out! Then she got the grapefruitseed extract -- Source Naturals Citricidex Grapefruit Seed Complex, to be exact. She also started taking Arginmax. She had what she described as a "nasty" period, but after that we were able to have the first pain-free sex in nearly two years. Who knows -- different things seem to work for different women, so I thought I'd post it. Good luck!
Commenthey does anyone else out there get really really irritated after taking a shower? does anybody know what this means?
CommentI'm 20 and have had vulvodynia off and on for about a year now, and had gotten somewhere with taking amitriptyline, when I had a really emotional break-up with my boyfriend, and basically got right back to where I started. I do feel that vulvodynia for me atleast is a physical manifestation of my emotional stress. I was referred to a physical therapist in Blacksburg VA at CAWH (google it) and it has been working out really well. At first I didn't think that it could all be related to my muscles, but I can see through biofeedback that it really is, and she tells me that I put all my stress in my pelvic muscles. Through doing exercises, I am improving, and I recommend thinking about physical therapy if you suffer from generalized vuvlodynia. I also want to add that I do not have any outward physical symptoms that would indicate a dermatological reaction, so patients with those types of issues may of course also need other treatments.
CommentIf you are getting irritated after showering then it can be a few different things. First do not be washing the vulva with soap. Only use water to wash your vulvar area. Gyno's usually tell you this. You WONT smell. Soap causes you to smell because it washes away all of your normal flora and causes infection which in turn causes you to smell. Secondly, wash your hair in the sink. Your shampoo could be running down and touching the vulva and irritating it. Lastly, you could be sensitive to chlorine in your tap water. Get a filter for your shower head that eliminated most of the chlorine in the water.
CommentHello. I returned from my referral from Vanderbuilt University Medical Center this afternoon. I met with a very nice Dr. and a student. The student knew nothing of VV, so boy, did he get an eduacation. The Dr. was very nice and seems willing to work with me. We talked for 2 hours about vulvodynia!! At this point, I'll update on the last few weeks, which have been much better. No nerve pains, no swollen, red, irritated, itchy, burning vulva. For me, I noticed a pattern that coincides w/my cycle. I am back to the B/C I was on before the itching began in Feb. Next week is the time of the month that if it's going to happen, it will.(Hopefully not!) This new Dr. really listened, but didn't have much to say other than to keep doing what I was doing, which is the Norpramin, no soap, no biopsies for a while,no estrogen, no testosterone, no steroids. He said I looked extrememly well for the trauma my vulva has seen in the last 8 years. He really didn't have anything to offer, but said he'd atleast be willing to work with me. I left there happy that I feel good and the area is looking good, yet at the same time I'm a little disappointed because I was hoping this guy would know all the right stuff. But to be willing to work with me and to take 2 hours to converse about the situation was a nice change. He too agreed this is trail and error. So, still, reallly, the ball is in my court, as it seems to have been all these years. I wish I didn't feel like most of this is up to me, but I do. You should have seen the stack of papers I brought with me! Anyway, like I said, I can't complain because physically, I am feeling good. And, for the first time, I had a Dr. ask about the emotional toll this takes and what it does at times to quality of life! Wow! Never had that happen. Any other suggestions of someone in the Nashville area who accepts tri-care(military) insurance, let me know. Also, tip on the shower:Using one of those removable heads helped me. They are inexpensive and can be found even at Walmart. Looks like a snake that can be taken off the wall and aimed where needed. Helps esp. when no soap is used. To better days ahead! Jennifer
CommentHi. I forgot to mention that I have been using vitamin e oil from GNC to put on the skin of the vulva. I do this a few times a day to see if it helps improve the skin. Also, I've been taking 500mg of Magnesium. I'll keep you posted.
CommentI see Dr Elizabeth G Stewart and recommend her highly. I know 2 other people who have seen her for random vulvar issues and they have also loved her. Any specific questions, I'd be glad to answer.
CommentSUPPORT GROUP - Would any of you New Jersey sufferers be interested in attending a support group meeting in Wayne on July 28th? It's NVA organized and I think it would be really great for us to be able to get together in person and share information or just vent. Sometimes as these groups get larger they can invite guest speakers, etc. Anyone who is interested please feel free to email me.
CommentFor those of you who have been diagnosed with vulvar vestibulitis and vulvodynia what is the procedure to get diagnosed?
CommentI am 22 and have suffered from VV for 2 years. I have tried most tablets and none of them have really done much. I have been seeing a pain specialist for a few months now, he is very good. He has suggested that i have an epidural. This would numb all the nerves for a few hours and hopefully knock them back into place afterwards. Im just wondering if anyone else has had an epidural for VV? was it successful? im quite opitimistic about it. It would be good to hear from you.
CommentI wanted to let everyone know about what water may help many out there when rinsing after urinating. I have found infant drinking water to be the most soothing. Tap water as well as distilled water both still contain chlorine as well as other chemicals which may be irritating for some of us. I did not know distilled water also contained chlorine etc. until I asked the pharmacist yesterday while at the store. However, b/f asking I did notice the infant water to be the most soothing and did not know why. I hope this helps someone.
CommentTo the woman who saw Dr. Stewart...what do you have, vestibulitis or vulvodynia. How has she helped you and are you feeling better? THANKS!
CommentTo Jennifer: Jennifer - I noticed in your last post that you are in Nashville. So am I!!! I have never met another person in Nashville that suffers with this. Who did you see at Vanderbilt? I saw Dr. Entman a few times. Please e-mail me directly if you would like to correspond. Thanks.
Commenthey i posted a few days ago about the vegetarian yeast-free diet and nobody responded. Please PLEASE can anybody out there help me. I just don't knkow what to do about this. Thanks
CommentHey i wrote a little while ago about a vegetarian yeast free diet and didn't hear back from anyone. Please PLEASE if anyone knows anything about this could you please post something. I would really REALLY appreciate it.
CommentI posted here last month. I have had vulvodynia for 10 years and have had many operations and tried all the meds available. I'm from Australia and they are using botox injections to all the pelvice floor muscles. I had the injections 7 weeks ago. So far I the pain and irritation after sex has been alot better. The botox paralyses the over contracted muscles so when the botox wears off the muscles should be relaxed. It may have to be repeated. I know of other women who have had this done and it has been successful. I hope this might help. I was so bad that sex was out of the question, so a mild amount of irritation and discomfort is great. Hope this might help .
CommentNatalie- I have had 4 steroid epidurals since April 2004. One every 4 months. The doctor who suggested this is a saint in my mind. My pelvic floor muscles were in a constant state of spasm, which caused constant burning, stabbing pains in the urethra and around the vagina. The epidural calmed the inflamation of the nerves which was causing the muscles to spasm . I am pain free and have been for several months. I know this will not work for all at this site, but am sure it would help some of you.
CommentI have a secondary vestibulitis, but if you've read her book, she has many specialties. I've been seeing her every 3 months or more for almost 3 years now. She works very conservatively and slowly. Her manner is that she seems to really take interest in what you're going through, so you feel really comfortable in her office. I also like that at times of panic, she has always returned my calls (I've recently moved, so I can't just go see her anymore). Most importantly, she got me where I am today and continues to see me. I had pain that felt like hot knives slicing through me when I had sex and today, I have sex on a regular basis with discomfort at times and I'm off all meds. In short, I started with topicals and added oral meds (and switched it up a lot as I have side effects to everything). Eventually I did PT and feel this was a huge help in keeping me off meds. I can't really go into full details here, but if you like I can email you. Obviously, I'm not cured and never will be, but I'm in a good place. Like I said, I know 2 other people who have seen her. What kind of problems do you have? Maybe it's similar to theirs and I can tell you how she helped them. Also, I don't write on this site often, so I don't know where, but I have seen others talk about her, but way back in the guestbooks. Seems no one currently reading has/is seeing her.
CommentAmanda- I am not a vegetarian, but can only imagine your restrictions. I was on the yeast diet for 3 months last summer. I was trying to couple it with the low-oxylate diet and found that there was basically nothing I could eat. Last December I saw an MD who suggested I switch to a low-glycemic diet. I found it much more successful. At the time I was also taking Grapefruit Seed Extract and Calcium Carbonate w/Magnesium. She treats systemic yeast and finds the yeast-free diet too restrictive. I continue to have success. You can find this information at http://www.harmonywomenshealth.com/web/ Click on Medical Articles, then Click on Sugar in Diet, here she shares her philosophy and lists the foods that are good to eat. If you have any more questions you are welcome to e-mail me at margaretmelkins@msn.com Good Luck! Margaret
CommentFor those of you who experience rectal/anus burnnig and itching with your vulvodynia---what do you do for relief? Also, when you experience the rectal/anus burning itching--are you experiencing vulvar pain as well, or does it seem to alternate areas? Thanks....
Commentanal and rectal burning sounds like you have a systemic yeast problem. look online for a product called threelac, i really think it will give you relief.
CommentHas anyone had any luck using topamax for their vulvodynia?? I cannot seem to read anything about it. My doctor started me on it two weeks ago. Thx
CommentI have gone to the doctor & she doesn't know what I have, but thinks it might be Lichen Simplex. I just got married in April & it hurts to have sex. My deepest fear is that my new husband will think,"Gee...I didn't sign up for this..." and wish we hadn't have gotten married after all. I put myself in his shoes and the view inward to the relationship is scary. She has prescribed hydrocortizone 2.5% to apply to the skin tears on my perineum and to do that for 2 months and then come back. I don't think I want to wait that long, do I? Other symptoms are yeast infection-like itching & discomfort, hurts to wear jeans, clitoral oversensitivity (in a bad way) and burning. Every time I've been checked at the gyn for yeast, there is none. No bacterial infection either. I did some research on Lichen Simplex, and got really scared when I saw info on Lichen Sclerosis - the labial atrophy in some of the severe cases is REALLY bad. Those poor women can't have sex at all anymore, as it completely narrows or even closes off the vaginal opening. Your inner labia dissapear and/or fuse, you deal with constant tears or fissures in the thinning, white skin & there's no cure. If all of this was an STD, it'd make sense, but it's not! I don't know what I have, but I nknow it's affecting my emotions and my marriage...
CommentI have had symptons off and on of vulvodynia for the last 6 years. It seems to be bothering me more lately. Does anyone know of anyone in the Washington DC area who specializes in vulvar Does anyone have suggestions for temporary pain relief, like an anti-inflammatory or topical agent? My symptons were preceded by a bacterial infection and I was 22 then. I'm tired of this! I don't have a boyfriend so it's really hard to meet men knowing that I'll have to explain that I might not be able to have sex. Thanks for any input you can give me!
CommentTO RACHEL I feel very similar about my relationship with my husband. We have been married seven years and have intercourse only about 10 times per year. We are now at the point where we would like to have a child but with the pain and inflmation around my felvic area, it makes it difficult to have regular intercourse that leads to pregnancy. BUT my husband is WONDERFUL about all this and we find other ways to maintain our relationship (no, I don't mean I just pleasure him). Be as open and as honest as you can with your husband. This will help your relationship grow and his understanding. Good luck!
CommentDr. Goldstein has a Washington DC office. Ph: 202-887-0568.
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CommentHI COULD ANYBODY PLEASE GIVE THE FULL ADDRESS OF DR. GOLDSTEIN. THANK YOU
CommentI had suffered from vestibulitus for three years and was running out of hope. I had been to doctors countless times who misdiagnosed me and couldn't treat my condition or improve the pain. Finally, after getting a biopsy done and the results showing that the only thing medically wrong with me was that I had inflamed nerve ending in my vaginal area, I decided to do some research on my own. I found out that if your pudendal nerve(a major nerve that supplies your genital area) is compressed, that this can cause the very painful condition of vestibulitus. This is only the case for some people, since vestibulitus can be caused by other things. But, I went to a chiropractor who took x-rays of my pelvic area and she determined that my pudendal nerve was compressed. Through three months of treatments involving acupuncture and chiropractic adjustments to my pelvic and hip area, I have been healed! I have been pain free since these treatments and would encourage all of you to check out this option as it may be the case with you too. My chiropractor name is Dr. Barbaro Brost of The Brost Clinic in Wayzata, Minnesota. She is one of a few chiropractors who do this kind of therapy and I would strongly urge you to get in contact with her. Her phone number is 952-473-9637.
CommentHi alyssa, i was just wondering what exactly your symptoms were, i have had this pain for many years and have wondered if it was a compressed nerve but wasn't sure. anythink you coul doffer would be great
CommentAfter 3 years of unidentified vulval pain and endless tests ive now been referred to have a fentons procedure. I'd love to hear from anyone who has had this and if it has been a success or not. I now feel i have ran out of options and that this is the next and final step. Just hope it works. Would like to hear some feedback, feel free to mail me. Thanks, Lisa
CommentHi! I've been visiting this site since January after being diagnosed with Vestibulitis. I just wanted to let you know that I had intercourse without any pain over the weekend and I wanted to share with you some of the things I've been doing. First of all, I've been talking with Margaret, who is also on this site and has really given me some good insight. I definitely think my issues started after a bacterial/yeast infection, so I've been taking lots of supplements to keep the yeast at bay. I've been on boric acid for a few months and my doctor (Dr. Marcus) wants me to stay on it for a while (he said a year). I've also been using the neocutis cream that I purchased from Dr. Glazer. But the thing that I think has really helped is (believe it or not) this Active Release Technique that some of the other women have mentioned. Last fall my hip started to bother me, so I figured I go to the Chiro to have it checked out. Sure enough, he said that my psoas muscle was extremely strained. This muscle runs directly over the 3 nerves that supply the pelvic area and b/c the muscle was so strained, this could in turn pinch the nerves. I've gone to about 7 sessions and I feel better. Maybe it's a coincidence, or maybe it's a combination of things, but I can really tell a difference. Speak to your doctor about the boric acid (this keeps the vaginal ph in check) and also consider trying this ART if you've had lower back/hip issues. Good luck!
CommentThis is my first post - I am so relieved to have found this forum. My problems started in Jan 03 - I became very sore in the entire pelvic area, then red and swollend both inside and out with extreme sensitivity and burning. I was 18 when this happend and flipped out thinking I had an STD of some sort. The first doctor said I had a bacterial infection, and inbalence of bacteria levels and it was not sexually transmitted. I did not even need antibiotics for it, she said it should clear up within a week. The swelling did go away, but the soreness and general discomfort and redness did not. Over the next year I went to 2 other doctors all thinking yeast or bacteria and always having negative cultures. Sex became painful and I felt like I had lost some sensation in my clitoris. The doctors would always find tears in the vaginal opening and ask if I had rough sex - I was barely even having sex - so they said its probably from moisture. My sex situation went like this - I could not "lubricate" myself, lack of clitoral sensation, my partner feeling too big causing pain on the back of my vagina, really hard time reaching orgasm, and if I did have an orgasm my own fluids caused horrible, burning. My paps and cultures were always normal and aside from redness and tearing there were no sores, yeast, bacteria to treat or diagnose. In April 04 I had STD testing redone (although I had had the same partner for 3 years) including a test for herpes do to cracks in my perineum and my anus, usually just 1, sometimes 2 at a time. The cracks were small, like a red scratch - and hurt only when pee touched them. All the tests were negative - so I was relieved, but more lost with no cause for all of this pain. I began having cramping that had nothing to do with my period, and my inner thighs and sometimes lower back burned and ached. In June 04 I had gardnerella - and the antibiotics for that actually gave me a positive culture for yeast. In July 04 my clitoris started to hurt - burned and ached and throbbed. The GYN looked and said it looked normal - as always I was red and inflamed and gave me another treatment for yeast. Also in July I started Lexapro and had already begun taking about 40mg of valuum/ day. That decreased some of the pain, the clitoral aching, burning, and loss of good sensation came back but only lasted a few weeks and most of the winter went well. In february I stopped the valuum and lexapro and by march I swelled up and the burning came back. I got more bloodwork done for herpes, hiv and cultures - all negative. This relaxed me a bit and aside from some soreness (and I was not longer sexually active) it was ok until the end of May. Everything got so much worse as my stress became higher and I noticed the glands on the sides of the vaginal opening were really red and swollen, my anal area ached, my clitoris had a vague numbing/ burning sensation and inside really burned. I had another exam just to be sure no sores were missed or something and (if you can believe it) more bloodwork for herpes and HIV and syphilis (for my own peice of mind knowing I had not any sex for 4 months, so just incase). Of course negative. FINALLY this newer gyno suggested Vulvodynia - and I think my symptoms match. They are always slightly present - stress is the main cause of bad flare-ups and also long times of sitting or when I wake up in the morning is when the pain is worst. I have been using no soaps, cotton undies, ect. The other possibilty is atrophic vaginitis, that sounds close to my symptoms as well. I started zoloft and klonopin and within a week my symptoms have lessened - still burning inside and out and in my thighs, but the clitoral pain feels a little better. I made an appt. with a vulvadynia specialist at yale-new haven hospital - but its not for 6 weeks. He is supposed to be excellent so I'll let you all know how it goes. I know this is pretty long but thank you so much for listening - I have tried to post at other non-specific GYN forums but do not really get much of a response. Reading your stories helps me know that its not just in my head like doctors were originally telling me. One even said he couldn't help me - I need psychiatric care! I am seeking it though because I find nearly 3 years of this mysterious pain very depressing and stressful - I also found the most fantastic therapist too. Again, thanks for this forum and the support - all advice and opinions welcome!
CommentBritt, just a thought~if you are having pain in the entire pelvic region including anus and perinium, lower back and legs it might be something to do with pudendal neuralgia (nerve entrapment) You might want to mentiont that to you doctor. Just something to think a bout, good luck with everything!
CommentCould the individuals who have had success with a chiropractor, please post their specific symptoms. I just started seeing a chiropractor hoping for relief --just curious what specific symptoms those of you who've had success had prior to the treatment and how things are going after. (wondering what to expect, so I can decide if this will even work for me). Thanks!!
Commentbritt- let us know how it goes at yale-new haven! Dr Marcus, NJ patients-- I have an appointment with him on Tuesday thanks to your references.... he feels like my last hope!! im praaayingggg he can help me!
CommentHow can I reduce the swelling in my vulva? I have that along with burning off and on. Icepacks don't seem to do the trick. Thanks.
CommentFor all women suffering from bacterial vaginosis I really recommend ordering Enzara. I was trying everything from l acidophilus to vagi gard suppositories. I didn't notice results until the fourth day, but it was Really worth it!!! I was tired of going to the clinic and it was safe and confidential. I didn't have the money to pay for a doctor's visit and the medication so I did some research and was skeptical at first, because I thought this was a fake, but I thought, Hey what do I have to lose. I use the vagi gard suppositories with the medication and I still take l acidophilus. But I can honestly say that this really works.
CommentHas anyone been diagnosed with Sjogren's disease? If so, what treatments have worked to relieve your vulvodynia symptoms? Please post something if you've had any luck. Thanks, Amy
CommentI struggled with Vulvular Vestibulitis for about 5 years, a couple of those were undiagnosed. I became very proactive, reading sites like this, and stumbled across the name of a doctor at the University of Iowa Medical Center, Dr. Galask. I drove ten hours on the days of my appointments, but it was well worth it and after about a year and a half of treatment, my issues have been reduced significantly.
CommentHi Stella: I'm glad you're doing better. Can you tell us what treatments have worked for you? Thanks.
CommentThis is kind of long, but please read it! I read all the guestbooks and haven't quite found someone who can really help! I have never had any problems "down there" until I had my first yeast infection about 4 mos back. I happened to be menstruating while I had it, so diagnosis was more like "it's probably a yeast infection although I can't tell because of the blood, try this cream." The vaginal itching cleared up as did most, but not all, of the clitoral itching. We also learned that we conceived baby number 4 right at the end of that month. I was wondering what other sufferers have done regarding a vaginal birth. Stretching the vulva at all hurts so bad! As far as vaginal birth, I'll have it no other way and suppose I'll have to use a numbing gel at the end there, but I'm afraid it will be totally unbearable. Also, I breastfeed my babies for two years or more and am very opposed to taking any meds while pregnant or nursing. But the idea of living with this awful condition for four more months of pregnancy plus two years of nursing before I can try Elavil just is awful! The clitoral area itches and the pain is only on contact in the vulvar area, not in the vagina. Any suggestions for someone in my situation? (my poor husband and I both pray daily that we'll soon find a solution. We both miss sex so much!) Also, what about this topical tea tree oil? Has anyone tried that with any success? (I emailed a lady about it but she never responded.)
CommentI am seeking info on the High Intensity Focused Ultrasound treatment for LSA patients. I am currently trying to get my daughter to China for the treatment but can't find documentation more current than 2002 on the success rates. She is currently suffering life treating infections, chronic pain and no help in the USA that we can find. She was diagnosed 24 years ago with LSA and now Vulvodynia.If you have info I would greatly appreciate it. Thanks!
Commentnice site.guys am here.
CommentPam, did you check out the L.S. Yahoo site?
CommentHas anyone else been diagnosed with Lichen Sclerosus as well as Vulvodynia? In 1982, I was diagnosed with L.S from a biopsy. and used Testosterone ointment for several years til I saw Dr. Willems in La Jolla. He told me either I never had Vulvodynia or it was in remission and that I had Vulvodynia and should use Estrace cream instead of the Test. ointment. I wasn't able to get a copy of my biopsy report b/c it had been so many years ago. While posting about these events on yahoo, I was informed that just b/c the white patches and fissures are gone, I still have L.S. I was stunned to hear that b/c Willems never said that. I was dumb enough to believe what he told me. I've been suffering with terrible burning lately and now have come to realize that L.S. can be contributing to my pain. I made an appt. with a female Dermatologist for tomorrow to see what she has to say about me having L.S. and Vulvodynia. Oh, and on top of that, I'm menoapusal, so all those things can cause vulvar pain and burning. Sue
CommentAmber - My heart goes out to you! I would suggest you read what many of us ladies have said regarding yeast. The itching sounds like yeast. The cream you used may have not cleared it up completely. I had burning, but no itching, and went 6 months before I would consent that "maybe" it was yeast. My yeast swabs (vaginal) had been negative, but this was on my vulva and cliterous. I finally gave in and tried some natural yeast (anti-fungal) remedies (Grapefruit seed extract or Oil or Oregano) along with a low-oxlate diet in case it was oxlates causing the problem, plus I tried the Estrogen cream to help thicken the skin (that did help). Your itching sound very much like yeast to me. Bathing with tea tree oil (just a few drops) helps also. I still use it every time I take a tub bath. Oh! And Pro-biotics (as opposed to "anti-biotics") - such as ThreeLac or Healthy Trinity helps tremendously. When you put the GOOD bacteria in your digestive tract, it helps fight the bad bacteria, as well as yeast or other fungal infections naturally. I still have some irritation sometimes (especially after sex) and just lately I started doing Probiotics again. It really helps. I can tell a difference in just a day or two. You will find that there are many opinions here, but that's okay. Try different things. GSE and Pro-biotics worked for me, although I still have problems with irritation, mainly because I think my skin suffered some damage from having fungal infection for so long and being untreated. That's my opinion anyway. No doctor could help me -- all the help I got was on this site. Truly. Congratulations on your pregnancy! I will pray you will find some relief. PLEASE read and try some things listed here. They will help, I'm sure. Oh! Read up on a yeast-free/sugar-free diet. IF you have a fungal infection, sugar and yeast products (like beer, bread, cheese, etc) will just fuel it even more. You don't have to do it forever, just until you get the problem under control. Good luck and God bless! esther
CommentEsther, re your ost 29 July in response to Amber. Your post is very interesting to me. I honestly believe that my IC and Vulvodynia was caused by yeast. It has been 3 years now I have treated it and got better. My problem now is that I am menopausal for 6 years now. In the beginning of the onset of my problem, I could have sex, it still hurts but penetration was possible. Now after three years of treatment instilling different antifungal in my vulva from boric acud, nystatin, amphotericn, etc. as well as prescription and natural antifungal. I got better. I though believe that this disease affected the health of my vulva that I developed vaginal atrophy from it. After 8 months of no sex, I tried it and I had abrasions and tear in my vaginal wall and penetration was so painful and I developed cuts that bleed vert little. I was afraid to use estrogen cream, like estrace, because I was tokd that estrogen feeds the yeast. So matter how thin and ry I was I never attempted too. When I try one day, I feel burning so I stopped. Anyway, I told myself that I have to do something about this, otherwise my sex life is going to be gone foreever. I tried esrace tor 3 days now (1g). The first day I started to itch and burn, but now it is the 3rd day. It is better. Can you please let me know your experience on Estrogen Cream vaginally. Do you think this will heal the damage skin from the yeast infection. Or will it aggrevate it. Your opinion is greatly appreciated. I have been so well just treating the yeast and I do not want this estrogen to aggrevate it once again. Though, I am still religiously doing the natural antifungal, GSE, Olive Leaf, cats claw, coconut ooil, and lots of lots of probiotics. I do not miss a day and will take it for life. a lot of supplements for my immune system as well to prevent this yeast infection from coming back. What do you think Esther. Your insight is greatly appreciated. Are your menopausal? Thanks
CommentTo Amber. Hi Amber ! Can you please tell what kind of skin did you have? I have very hypersensitive skin ,my own dischardge very burn my skin ,When I try put somthing for soothing skin , it burn too. My doctor tested me a lot of time for vaginal yeast,they came back negative. How you found out that you have yeast ? thank you very much . Marina
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CommentI have Pelvic Floor Dysfunction but not vv. I would like any information anyone has on Botox injections. I have been in physical therapy for six months with some improvement to some muscles but no improvement to my puboccygeus (spelling?) muscle, which is where all my pain seems to lie. Also, if you had PT before the injections, how long did you try PT before resorting to the Botox? Thank you.
CommentSome of you may have read the posting I wrote about 6-7 months ago. I'd like to share my story/give an update. I'll be 26 this week. I married my highschool sweetheart 4 years ago this September. We had sex about 3 years before getting married. It was really wonderful until the summer we got married. Then I had a bad yeast infection that lasted months. Sex hurt during our honeymoon and then just got worse. I saw 8 doctors, physical therapists, acupuncturists, dietichans, etc., tried dozens of creams, pills, suppositories, injections, diet changes...all with little to no relief in the pain I had. (and the pain was only during penetration during intercourse). Then last year I started seeing a doctor who suggested that surgery was my last option, that I would not only have surgery, but also during recovery I would see a sex therapist to help me on the mental side (as you know this can be very stressful, depressing, hard on a marriage, etc.) and also do physical therapy. I was also to go off the pill and have an IUD implanted (the side effects of the pill include re-occuring yeast infections which I'd been suffering from off & on for almost as long as I'd been on the pill). I had the IUD implanted in October of 2004 and had a vestibulectomy on Dec. 8, 2004. It was very painful but within about 2 weeks I was back at work (sitting on a donut pillow, but back to work non-the-less). After about 3 months, my stitches were fully healed and now it was time to go to the "shrink" and to start physical therapy. I was also put on Effexor (150mg once daily) about 2 months ago because I was now noticing shooting pain just below my clitorus for no apparant reason (which my gyn called dysesthetic vulvodynia). The Effexor has been effective for that. At physical therapy I've been going once a week for the past 3-4 months and now going every other week. Doing everything from manual manipulations, bio-feedback, using a dialator, interferential electric currents, etc. About a month ago my husband and I started having sex again. It started out with just having him enter me and I would do deep breathing and relax my muscles and we'd just lie there. Then we worked up to having "real" sex...and it's been almost pain free! I'd say I'm about 90-93% pain free during sex...the harder more playful sex is still a little difficult...but we're working on that. My physical therapist suggested using coconut oil on the outer skin of the vulvar that feels "raw" after sex to help. I also just got an interferential stimulator for use at home (its a smaller version of the one used at the PT's office...she suggested to use it a few times a week). Please know there is hope. There were times in the past few years that I was deeply depressed, thinking I would never have pleasurable sex again...but I knew that I wanted to have a physical relationship with my loving husband (who has always been my biggest supporter). If you need any information on the treatments I've been doing, doctors names, someone to be sympethetic, etc. let me know...I'm happy to share any information that might help someone else improve the quality of their life. I've learned that there are about as many different treatments as there are women with this problem... Hang in there...Be hopeful... here's a great quote...write it down. "The door to a balanced success opens widest on the hinges of hope and encouragement." Have hope for yourself and encourage eachother.
Commenti want my doctor to do hormone testing on me, but i think i have to be more specific. has anyone out ther ehad hormone testing and if so what were you tested for exactly?
CommentAnonymous wrote about hormone testing. I, too am interested in this but have no idea what to ask for. I'm 36 at this point and have noticed for years that certain irritations follow a cyclical pattern. I was tested for something a few years back and all that was written was there was an imbalance. I was given a shot of estrogen and sent on my way. It didn't do a darn thing and after a few more trips to other Dr.s we came up with VV. Any suggested tests would be great for us to know. Thanks!!
CommentRegarding hormone testing: A couple of years ago I convinced my wife to have her hormone levels checked. We went to an endocrinologist who accepted our insurance. We explained the reason for our vist(my wifes recurent tear at the six o'clock position) and we also mentioned her use of Estrace cream. He seemed more concerned about what the Estrace was doing to my body than what was going on with my wife. We did have sex during the time she used Estrace and it had no impact on my body or hers. He swabbed a couple of areas within her vulva in addition to taking a blood sample. He said the swabbs would indicate more accurately the levels of estrogen actually at her vulva. He said because her menstrual period was regular he doubted a problem with her hormone levels. Basically the hormones that can be checked are Progesterone, Estrogen, Testosterone and DHEA. Unfortunately the results did not indicate anything out of the normal range, so applying all that Estrace cream was a waste and possibly a risk. That's still a problem, doctors are prescribing Estrace and other hormone creams to women suffering from these Vulvodynia symptoms( dryness, itching, burning, tearing, thinning, etc.) because they don't know what else to do. From my reading here and else where continued use of hormone or steriod creams can cause the skin to thin out, which is just the opposite of what many sufferers of Vulvodynia want. If you are going to have a doctor test for hormone levels use the internet to look up what they are, learn as much as you can prior to getting the results. Best of luck. Frank
CommentFrank-Thanks for the suggestions!
CommentHi- I posted here a while back. I started having vaginal problems when I got pregnant in March. It seemed like it was a combination of UTI and yeast infection. Of course, my tests always came back negative. I was hoping maybe i was just testing at the wrong time. Anyway, i lost the baby in May. And while my symptoms have improved dramatically, they are still there a little. Before I couldn't even leave the house, i would burn so bad and it always felt so sore like something was going to fall out. Now i can go out and do things like i used to. But it still feels uncomfortable to wear tight pants. Also, now, i just feel minor discomfort after I pee. Not burning, just discomfort. I can't really describe it. And occasionally, especially a few days after my period, I get burning on the outside (labia majora). I went to a new Gyn last Tuesday. He said I was very red and he took a sample which he said looked like yeast. Of course, the cultures came back negative! He said he tested for yeast and did a DNA probe - whatever that is?? He said it's strange that I never had any vaginal probelms before I got pregnant. He suggested interstitial Cystitis and is sending me to a urologist. However, I looked up IC and i do not have the common symptoms - urgency and frequency. So I called a vulvodynia specialist in New Haven, CT. Her name is Dr. Susan Richman. I go to see her August 26th. I guess my questions are does anyone know anything about Dr. Richman and does this seem like it could be vulvodynia. Oh, and it doesn't hurt to have sex, but it does feel sore afterwards. I just got married and am curreently in therapy because i have anxiety attacks all the time thinking i am never going to be normal again. So any comments wuold be really appreciated. Thanks you so much.
CommentLadies - estrogen cream does NOT thin your skin. It is prescribed to toughen and THICKEN the skin. Frank is thinking of STERIOD creams... like cortisone-type creams. They will thin the skin if used for too long a period of time. But estrogen (Estrace, etc) is used to thicken the skin. Also, when applied to the outside (rather than inserted into the vagina), the amount absorbed is so minimal that it would not have an effect on your estrogen levels. My GYN prescribed this for me and I used it for about 6 months. I felt it really did help, and certainly did not hurt. I think there is some misunderstanding circulating here -- just wanted to clear that up. --
CommentMary - I am, I guess, "peri-menopausal". My periods have just started to get a little erratic the last three months. I'm 45, but my sisters who are 50 and 52 haven't even gone into menopause yet, so... it may be a while :-) Anyway, to address your question - I did not use estrogen cream vaginally, only on the skin outside. It has NOT been my experience that it "fed yeast" -- not at all. I believe it helped my skin to get better. Sometimes it would burn if my skin was already irritated (from sexual or period, maybe), but I kept using it. Estrogen cream has a long track record of being prescribed for women pre-surgically -- my sister used it before they did her hysterectomy vaginally, to help her skin be thicker and healthier. That is my experience anyway. I will tell you that sometimes I still get a little irritated. It seems right before my period (when estrogen is the lowest?) I seem to have the worst problems with irritation. Recently, I went back on the probiotics and since then (3 weeks or so) I have felt much better. Very little irritation. Also, I recently switched from the GSE (which I've taken for over a year now) to Oil of Oregano, just for a switch-up. Maybe that is helping too. It is powerful stuff! Hope this helps! eh
CommentLet me first say this is a wonderful sight for those of us who suffer. I am so frustrated when I have to scroll through the not related topic. I first wrote back in book four or five to say how wonderfully happy I was to have my problems at rest for 3 years. Well, unfortunately after 7 wonderful years of remission, my symptoms have re-occured. My doctor that originally diaognosed and treated me with Vulvodynia and Lichen Planus has since retired. My new Gyno seems to be so passive and unfamiliar with this, so I've been very frustrated. My emotions have taken a nose dive since this started again in June, but I keep telling myself I've been through this before and I can get through this again. I know it doesn't go into remission overnight. I've been using Estrace and steriod creams which give relief, but out of the clear blue at any given time the intensity of the symptoms comes on so quick. I don't recall that happening when I had treatment the first time. The difference is last time I used Estrace alone for about 6 weeks before starting a steriod cream and then another one 6 weeks after that, then weened off over the course of another 3 months. This time I've started them together right off the bat, along with a suppository steriod at night. Any feedback????
CommentRegarding Estrace and thinning of the skin: I know that Estrace is prescribed to post menopausal women to thicken and rejuvinate the skin. My wife used it for a couple of months following surgery to repair muscles cut during episiotomies and to form a new scar in the area where she has a recurrent tear. Bottom line the Estrace cream did not help her, probably because she is not tearing due to low estrogen. That aside I stand corrected regarding my belief that prolonged use of Estrace will eventually cause the skin to thin out. I remember reading something to that affect here and like so many others adopting it as truth. Before I wrote this post I checked out several sites that listed the side effects of Estrace and while there are many, NONE of them mentioned anything to do with thinning of the skin. So I stand corrected and I do apologize for misinforming you ladies. I thank the person who corrected me. I am here to learn more about this illness and possibly share what I have learned with others, there is nothing to be gained in sharing the wrong information. Thanks again, Frank B.
CommentDear Karen, I, too, was in remission since the year 2000. It was not totally gone, but life was pretty much normal. I could wear whatever I wanted and V V was basically in the back of my mind. Then, in June, I got a flare up of the old burning symptoms. I ran to my old "supply" of cremes and ointsments. Nothing has worked. I, too, am back where I was in the late 90's....hurting all the time. I'm a wreck about this. Of course I'm older now and I just don't have that .."I'll conquer this" fortitude that I had before. All I can do is worry. The thought of being in stirrups for this crap makes me sick!!!! Email me at spenna@twcny.rr.com if you want to correspond.
CommentDear Karen, I, too, was in remission since the year 2000. It was not totally gone, but life was pretty much normal. I could wear whatever I wanted and V V was basically in the back of my mind. Then, in June, I got a flare up of the old burning symptoms. I ran to my old "supply" of cremes and ointsments. Nothing has worked. I, too, am back where I was in the late 90's....hurting all the time. I'm a wreck about this. Of course I'm older now and I just don't have that .."I'll conquer this" fortitude that I had before. All I can do is worry. The thought of being in stirrups for this crap makes me sick!!!! Email me at spenna@twcny.rr.com if you want to correspond.
CommentHas anyone reacted to toilet paper even though its says 'hypoallergenic' on the packet. I'm trying to work out what is irritating me at the moment. It is unscented and undyed but bleached......but I don't react to another brand of white hypoallergenic paper or sanitary products.
CommentLisa - I haven't had any problems with toilet paper, but I was told that pads are not good to use. I used to use Always pads which irritated me. There is a chemical used in the liner over the pad itself that has been known to be an irritant. Sara - we will get through this. I too was able to use any product for the most part (except pads). I went for my old outdated creams also. It's amazing how I feel like I'm right back where I was 7 years ago. This is a pain you just don't forget. I was told that flare up can usually occur with the changes in seasons and when a woman starts going through changes. I'm only 38 so I don't think my is related to any changes.
CommentWell I've just had a period but I've always used Cottons hypoallergenic tampons and pads (at night) and never had a problem with them before. Funny how I say 'always'....its as though I can't remember a life breofre this god awful condition.
CommentLisa, My allergist says I can use ONLY cotton pads that are usually used for makeup removal to wipe with...NO toilet paper of any kind. Have I noticed a difference? Not really. I'm scheduled for new allergy tests in Sept. Oh Boy...did this back in the late 90's. Karen...thanks for the words of encouragement. I'm 59.. been through the "changes", so to speak. I started exercising in late May to try to get back in form. That's about the only change to my routine of late. It's been especially hot this summer..lots of sweating? This constant puzzling and meandering through the mazes of " what if it's this or that?" just emotionally drains me. Hey...what's with the advertisements on this site? And.. the logo is bouncing into the text the last two days too. The screen seems to be too big and I have to scroll back and forth just to get the complete text.
CommentLisa, My allergist says I can use ONLY cotton pads that are usually used for makeup removal to wipe with...NO toilet paper of any kind. Have I noticed a difference? Not really. I'm scheduled for new allergy tests in Sept. Oh Boy...did this back in the late 90's. Karen...thanks for the words of encouragement. I'm 59.. been through the "changes", so to speak. I started exercising in late May to try to get back in form. That's about the only change to my routine of late. It's been especially hot this summer..lots of sweating? This constant puzzling and meandering through the mazes of " what if it's this or that?" just emotionally drains me. Hey...what's with the advertisements on this site? And.. the logo is bouncing into the text the last two days too. The screen seems to be too big and I have to scroll back and forth just to get the complete text.
CommentLisa, My allergist says I can use ONLY cotton pads that are usually used for makeup removal to wipe with...NO toilet paper of any kind. Have I noticed a difference? Not really. I'm scheduled for new allergy tests in Sept. Oh Boy...did this back in the late 90's. Karen...thanks for the words of encouragement. I'm 59.. been through the "changes", so to speak. I started exercising in late May to try to get back in form. That's about the only change to my routine of late. It's been especially hot this summer..lots of sweating? This constant puzzling and meandering through the mazes of " what if it's this or that?" just emotionally drains me. Hey...what's with the advertisements on this site? And.. the logo is bouncing into the text the last two days too. The screen seems to be too big and I have to scroll back and forth just to get the complete text.
CommentFrank - you are great! I commend you for standing by your wife and contributing so much helpful info to us ladies. I'm lucky also. My husband is very supportive. My first round of this started after the birth of my second child. I also am/was a Group Strep B carrier. I just can't imagine what started this relapse.
CommentTo Karen: Thanks for the kind words. I'm very happy if anything I have contributed has been of help. I don't think I will ever rest until I know what caused my wife to develop the thinning skin and recurrent tear. All of the guessing we do doesn't give us the answers we are looking for and you ladies suffer with the physical and emotional pain while guys like myself deal with our own frustrations. I accept our limitations and I am thankful things are not worse but I still want an answer. I hate to bring up the past but it serves to remind me of all my family has been through and why it would be such a waste to lose it all now. I lost a child to a genetic illness but it was a process that took several months and I did get plenty of information, explanations and answers. I continue to read and post here selfishly hoping to find "The Answer" and satisfy my curiosity. I really enjoy reading the words of support and encouragement you ladies offer one another, however as a man I will always be the outsider. Because of the nature of Vulvodynia I think of myself as the offender, part of the problem and it frustrates and depresses me. Stay strong and keep fighting. Frank B.
CommentHi, I just want to give everyone an update on the vitamin d treatment that I have been undergoing for the past two months. Things are going great, I can't believe what a difference this treatment has made! I have had vulvodynia for over 15 years and I have tried just about everything with no significant improvement. I did go into sort of a remission a few years back but the pain never went away, it just wasn't as intense. This treatment however has made such a difference I still can't believe it. I am no longer irritated ,sex is much, much, better, and I am able to wear a tampon without pain and I haven't had any kind of flair up of itching and swelling.I know that many people are skeptical of Dr. Peacocke's theories, but I am proof that it does help ( at least for now). For those of you that have suffered for a long time without any relief I urge you to look into this. Please e-mail me if you have any questions.
CommentHi Susan Can you please expand a bit on: 1. The rationale for these treatment - for example I live in a warm part of Australia and have very pale skin so I must be getting plenty of vit D. Has it got more to do with the way you utilise it in the body. Do you have any written info on this we could access? 2. What does the treatment protocol involve? Do you just take oral suplements? What dosage and how many per day? Thanks
CommentLisa, Dr. Peacocke said that it was not that i wasn't taking in enough vitamin d it was that my body nedded more vitamin d because I may be leaking calcium somewhere (probably my bowels). She has me on prescription stregnth vit d and calcium supplements with extra d added. she supports this theory by testing your blood and urine and comparing the findings with vaginal cultures. You will not find any writings on this because she has not published anything yet. According to her each women needs a certain level of vitamin d to keep the proper balance in her vagina. This is not treatment that anyone should try on their own because too much vit d can be toxic so it must be monitored by a doctor. This is just an abbreviated version there is a lot more to this theory. I hope that she will publish her findings because if the long term prognosis is good, she will be able to help many women who suffer from this.
CommentSara - sorry to hear about your recent flare-up. It's sooo discouraging to feel like you've conquered this demon, and then... poof! it pops up again! I thought about your new exercise program, and the heat and sweating. The thing that came to my mind was.... yeast. The old dreaded word "yeast". Yeast thrives in a warm, moist climate.... ergo our private parts. I have mostly beaten my yeast (I think) but when I exercise and sweat and don't change clothes immediately, I start feeling irritated down there. So it's possible the environment may have set up just a little yeast that is burning and irritating you. If you want to try that route, don't use those useless creams... use something natural, like Grapefruit Seed extract or Oil of Oregano, or Olive Leaf (by mouth). You can also use the GSE to douche with, but if your problem isn't vaginal, that doesn't help as much. I have used the GSE for about a year with great success and now am using the Oil of Oregano. "AZO" now has a homeopathic remedy OTC that is for yeast. But it is a little expensive -- Also, put Tree tree oil drops (4-5) in your bathwater to help with the irritation. It is a natural anti-fungal and antiseptic. Other than that... I don't have answers. Even I get mini-flareups, but usually near my period or after sex, it seems. It's annoying. Good luck - esther
CommentTo the person asking about the botox injections. I had botox injections to the pelvic area about 11 weeks ago. At first there was a dramatic inprovement but last week that all changed and feel exactly the same as I did before. The botox is supposed to paralyse the muscles so when it wears off the muscles are relaxed and not wound tight. I know of other women who have had great results from the botox so give it ago you never know your luck.
CommentEsther, Thanks for the advice. I'm off to purchase some oil of oregano at our local health food store. I was doing well..for me..that is for five yrs. Then, I had an upset stomach. I kept exercising and walking anyway. Then...I got a tiny itch! Man..in two days..agony. I get severe rectal pain when this gets really bad. /......can't move. I'll try some of your suggestions. If it's oral, I can usually handle it...if vaginal.. like Monostat...forget it..they make things worse. That is how I got diagnosed with V V years ago. Yeast medicines made things much worse...not better.I never have tested postitive for yeast. I was a normal women until I caught some sort of flu years ago. I was on erythromycin (sp.?) for 8 mths. The dr. kept saying.."You aren't susceptible to yeast, are you?" I didn't know what she was talking about. All I knew is that I was weak and tired all the time and she said I had the flu. Well, I got my first yeast infection after that course of antibiotics and my life has never been the same. That was 19 yrs. ago.
CommentEsther, Thanks for the advice. I'm off to purchase some oil of oregano at our local health food store. I was doing well..for me..that is for five yrs. Then, I had an upset stomach. I kept exercising and walking anyway. Then...I got a tiny itch! Man..in two days..agony. I get severe rectal pain when this gets really bad. /......can't move. I'll try some of your suggestions. If it's oral, I can usually handle it...if vaginal.. like Monostat...forget it..they make things worse. That is how I got diagnosed with V V years ago. Yeast medicines made things much worse...not better.I never have tested postitive for yeast. I was a normal women until I caught some sort of flu years ago. I was on erythromycin (sp.?) for 8 mths. The dr. kept saying.."You aren't susceptible to yeast, are you?" I didn't know what she was talking about. All I knew is that I was weak and tired all the time and she said I had the flu. Well, I got my first yeast infection after that course of antibiotics and my life has never been the same. That was 19 yrs. ago.
CommentHi, I recently developed severe pain in the vulvar area and the inside of the vagina as well. I saw 3 doctors before my insurance referred me to a Dr. at the Mayo clinic, in Scottsdale Arizona. Felt very relieved that this Dr. was extremely familiar with my condition and very sure that he could help me. I have been on his program for 9 months, and am 50% better. I was burning inside and out. Mostly what is left now is the burning in the vulvar area. 95% of the burning on the inside is now gone. He uses a hypocontactant program which is to be followed exactly. He believes this condition is a dermititis. The program consists of the following. All sheets, towels and underwear must be washed in free and clear detergent (no bleach, fabric softner or anything else for that matter. Only 100% cotton panties are to be worn. Only Olatum non-scented soap is to used on the body (hair must be washed in the sink). No douching at all. All tampons and pads must be 100% cotton ( I purchase mine thru the internet). A solution of Domeboro if to be sprayed on the vulvar everytime you void. The only lubricant to be used is astroglide. Must have intercourse 3X per week or a Vaginal Dialator. He also prescribes his patients with a HC 2.5% cream in a vanicream base. Does not burn like some of the other HC creams. In my case, I was prescribed Vagifem estrogen tablets, which I believed helped with the vaginal pain. I have found that with the Domeboro astringent, I need to dilute it more than specified. It will burn my skin if I don't. I still have a long way to go, but when I think about nine months ago, I have seen alot of improvement. Just thought it might help someone who is fighting with this painful problem. I am 49 years old, and my periods are very irregular, I believe this started with hormonal changes.
CommentJust in case you arent familiar with using natural antifungals, Start out slowly. Dont use the full dose on the bottle to start out. Work your way up. You also will probably experience a die-off effect. This can cause flu like symptoms, breakouts, sinus problems and more itching either of the skin or the vulva. When I have had die off I just had vulvar itching. It WILL go away, but can take a few days to a few weeks. The best thing to do while using a natural anti-fungal is to eat NO sugar and very few carbs. Fungi feed on these foods and remember to take a PRObiotic too.
CommentI think I'm having a die-off reaction right now (intense vulvar itching). I just increased my antifungal herbal medicine dose. At least I hope thats what it is because I can't figure out anything else I'm reacting to. Its so hard not to feel discouraged when you feel like this.
CommentSo have some questions about this die-off reaction for those who've had them. 1. I was going to ask my dr for some estrogen cream which I think might be especially beneficial to me when I have reactions because it feels like my nerves are too close to the surface. Others have said candida feeds on the estrogen. Have people successfully used anti-fungal herbs and estrogen cream at the same time? 2. I can't recall having a die-off reaction on the multiple occasions I took nizoral (I even took it daily for months on end). Any suggestion as to why that would be? Perhaps it wasn't as effective? 3. Even when I haven't increased my medication recently I have small bouts of irritation every now and again (eg might last an hour). I'm assuming this is still the medication slowly killing the yeast??? Any thoughts appreciated
CommentPrescription antifungals like Nizoral dont cause die-off. Actually if you take something like Nizoral along with a natural antifungal it can ease the die off. The way I see it, of you get die off then you know what you are taking is working. It WILL pass. I had die off for 2 weeks straight. If you can get your doctor to prescribe you a 5% lidocaine ointment that will help ease the itching of the vulva. Die off sucks, but it just shows the bad critters are in there and dying and the toxins need somewhere to leave the body. I guess it comes out easier in the most sensitive part of our body and ours would be the vulva sinced its always irritated. If you keep eating sugar then they are going to fight to stay alive since its a food source. Also be sure to take a probiotic. Bad bacteria grow back faster than the good bacteria. So if you get rid of the bad and dont replenish the good then the bad will come back and you just wasted supplements and time and went through awful die off for nothing.
CommentAbout estrogen cream causing yeast. I was told to make sure to use a THIN layer of cream and make sure to rub it into the skin very well. Dont put on a thick layer. Piling it on causes yeast because it keeps the skin moist and dark. And putting on a big glob isnt going to help any more than a thin layer rubbed into the skin.
CommentLisa - Candi is right about using a thin layer of estrogen cream. I was told by my doctor to use just a tiny bit rubbed into the vulva 2x daily. I took GSE along with the estrogen cream. No problem. Die off: I had maybe 2-3 days when I first started using the GSE where I felt a little bad: runny nose, slight headache, and a little more vulvar irritation. BUT... it did pass quickly (well it did for me), and I was sooo happy that something was working, I almost welcomed it :-) You should take a probiotic, BUT make sure you take them at least 2 hrs. apart, or the GSE (or whatever you're taking) will kill the good bacteria you're taking. (GSE and most other natural antifungals are also antibacterials) I used to take my GSE in the moorning when I woke up, and then take the probiotic about 2 hrs. later when I had a snack at work. I hope this helps! esther
CommentCan someone please explain how I should take GSE and how much. Is it like, a few drops in a glass of water, should I be putting drops in all 8 glasses of water I drink? Please let me know, thanks!!
CommentHi Terri: I'm glad you're feeling better. Do you mind sharing the name of the Dr. at The Mayo Clinic? Thanks.
CommentEster. Can you explain to me, how you got yeast, perhaps systemically which you think caused your vulvodynia. How do you know you got it under control. Are you on a very strict candida diet when you take the GSE and probitics. What kind of probiotics do you use. I honestly believe mine is yeast due many, many years of taking antibiotics on and off because of different infection, birth control use and prednisone as well as very bad sugar diet. I am, on my 3rd year detoxification. I tried the Estrace cream and used 1gram everyday vaginally internally for 4 days and guess what I got a lot of whitish discharge and started to hae pelvic pain. Then I started to rub it twice on my vulva and more discharged. I therefore stopped because I felt it was causing or feeding the yeast. All my alternative doctors tell me that Estrogen or any hormone feeds the yeast. Appreciate your input on the above. I tried to have sex and I get tear in my vulva and I get so sore the next day. Someday, I feel it is not worth having sex. I am much better without it. But what do you do if you have a partner in life?
CommentGreat! Now I know I'm not crazy!!!!!!!!!! I have new friends to share my pain with. I'm new to the guestbook. I have been suffering about 5 years with VV. I too have tried different things. I will be reading for the next week to see what's new that I can try.
Commentmy mom just had surgery and chemo for a cancerous tumor in her vagina. She is in intense pain while urinating. I have researched over an hour the guestbook here-- VERY INFORMATIVE! Any adive what could help her immediate urinary discomfort? Thank you! P.S. They are trying to shrink the tumor more-- it could not be removed. She is also doing radiation. Any support ideas?
CommentI have had vulvar vestibulitis for 8 years and I am 29 years old. I was lucky in finding a dr finally that specialized in this terrible disease about 4 years ago. I have been in many different treatments ever since. Now my doctor has recommended surgery since none of the treatments have worked. I have an appointment for a second opinion scheduled but its months away. I am scared to have the surgery done because I am afraid of it getting worse. But I don't know how much longer I can deal with this. My quality of life is terrible. I have pain when I sit, wear jeans, ect. I am also single and don't feel like I can date. Does anyone have any experience with the surgery or any words of wisdom? Thanks
CommentTo Dawn: I have been posting here since Guestbook Thirteen and there are several different surgical procedures women have described. Some describe removing gland and others spoke of removing inflammed skin. I don't want to give advice but suggest you check out some of the past Guestbooks if you don't get a better response. Best of luck.
CommentMary - I think I got yeast due to taking 3 different rounds of antibiotics within about 7 months for UTIs. I had not had yeast infections in probably 20 years, so it took me about 9 months of pain before I would "admit" that "maybe" it was yeast I was dealing with! In fact.... to be honest, I didn't really put 2+2 together for yeast until late spring of 2004 I started itching anally. THEN, I realized it MUST be yeast. Probiotic: I took "Healthy Trinity" by Natren which is the "top-notch" one, but it IS expensive. I have since found one made by "Udo" that is about 1/3 the cost. Some ladies here use Threelac, which can be purchased from the Internet. 2) Yes- once I realized it was probably yeast I was dealing with, I did a pretty strict yeast-free diet for probably about a month. I should have done it longer, but it was hard. Avoid: breads, hard cheese, vinegar, anything fermented, I forget, but you can get it off any website that talks about Candida and the diet to follow. Plus: NO SUGAR!! Big time bad. I had already been on a low-carb diet, so that wasn't hard for me at the time. Also, to the lady that asked about the GSE and water: Some ladies here put 2-3 drops in their water all day long because it tastes sooooo bad, but I put mine in empty gelcaps. I put 10 drops (3x daily at first, now 1-2 x daily) in an empty gelcap (bought for about $5 a bag for 250 count at the health food store), and drink it with a FULL glass of water. GSE is extremely potent and could damage your stomach or throat if not taken with enough water. Oil of Oregano (which I've just discovered) is also a very good antifungal. It is more pricey than the GSE (I buy the liquid GSE -- it goes much farther) but I have been hearing a lot about it from some people so I wanted to try it. My husband had a toenail fungus, so I bought it for him to take and started to take it myself (just once/daily now that I'm on "maintenance", so to speak). It is a little harder (to me) on the stomach, but supposed to be really,really effective. Oliveleaf Extract is also good. Garlic is good. Colloidal silver is really good, but, again, expensive. Sex: When I was at my worst (the first month or so when I got this) I couldn't. My husband was very supportive. Even after I started getting better, it was only maybe once/week, if that. (BTW, IF you have yeast, you shouldn't have sex. It definitely makes it worse, plus you can give your partner yeast. We use condoms now since I think my husband has it also - systemically -- and the condoms help me not feel as irritated -- not sure why) NOW, when I feel good it is maybe twice/week. I definitely get a little irritated after sex. I think my skin was damaged from the yeast sitting there so long untreated. That's why I used the estrogen cream -- to try and repair my skin. It did help, but I still struggle with irritation at times. Lately, I have researched more and I feel my problem may also be related to being peri-menopausal and my hormones being a little unbalanced. I'm seeing a new GYN next month and hope to get some insight on this. Overall, though, I'm 85-90% better than in 12/03 when I first got this. I thought I had cancer or something, it was so painful. Hope this helps! esther
CommentMary - one more answer: Sorry, I forgot. How did I know it was gone? I started feeling much, much better. Actually, I started feeling better within about 3-4 DAYS of taking the GSE. I cannot promise this will happen to you, and I still am not 100%, but I started feeling so much better even right at first. But, understand, I had intense burning, cliteral pain in particular, swelling, no itching, mostly burning. I could not wear pants or pantyhose at all. It was horrible. I was working full-time and having to sit all day. Yuk. I found a way to sit where I tilted my bottom toward the back, and avoided the front where the pain was, but, it was very very uncomfortable. I continued to take the GSE 2x daily for months (somewhere I read 6 months?) and took the probiotics 2x daily for a month, then once/daily for a couple more months. Now I just take them periodically. They are expensive! But good. The good bacteria help fight the yeast. WADE: Your mother: There is something she can rinse with after urinating called Domesboro Solution (you can get it at the drug store OTC) It is an antiseptic solution you mix with water and squirt (or soak) on you and it helps. Distilled water helps too. I used to squirt water from a little bottle after I urinated so I didn't have to wipe (it hurt too much) plus the urine irritated my skin so that washed it off completely. I have heard of some other things like: urinating in a shallow tub of water (sounds gross I know, but it helps they say) so that the urine doesn't sting so much. Sitting in a sitz bath a few times a day would help also (like they make you do if you have an episotomy when you have a baby) to soothe the skin. Wow! I really feel for your mom. I will try and think of some other things -- I have a dear friend whose mom had vulvar cancer for several years and passed last year. Take courage -- you will get through this! esther
CommentI have been reading the guestbooks for the last three months and find them very informative. I started experiencing burning and throbbing pain on my left side in February was diagnosed with pelvic floor dysfunction and vulvar vestibulitis in June. I was referred to an excellent doctor who specializes in pelvic floor dysfunction and chronic pelvic pain conditions. I take Neurton, which has made some difference and tried Effexor, which gave me horrible side effects, so I discontinued it. I had a nerve block in July, which gave me significant relief, but started to wear off a few weeks later. I just had another nerve block injection yesterday and a botox injection. I am praying that this combination of treatment allow me to be pain-free again. I have also been doing physical therapy, yoga, mayan massage and acupuncture. My husband and I have been trying to get pregnant and had to stop for a few months due to the pain and discomfort. As many of you know who have this condition it is very frustrating and leaves you feeling depressed and hopeless wondering if your health will every be "normal" again. I pray everyday that I will feel healthy again and will be able to pursue my dreams of having a family. Has anyone been successful at having children with this condition? Any words of wisdom or positive feedback would be appreciated.
CommentMichelle~what kind of nerve block did you get? was it in the pudendal nerve or in your back? thanks
CommentLadies, I couldn't take the burning pain anymore, so I went to the dr.s . She said I had a yeast infection and put me on 3 weeks worth of Diflucan. After only 2 pills the pain was so much worse!!! I can't take it. The absolute worst is the anal burning. I just want to cry constantly. Has anyone experienced this? Ther must be something else wrong w/ me. The pain is so intense...I just can't function at all. Any help would be appreciated.
CommentLadies, I couldn't take the burning pain anymore, so I went to the dr.s . She said I had a yeast infection and put me on 3 weeks worth of Diflucan. After only 2 pills the pain was so much worse!!! I can't take it. The absolute worst is the anal burning. I just want to cry constantly. Has anyone experienced this? Ther must be something else wrong w/ me. The pain is so intense...I just can't function at all. Any help would be appreciated.
CommentLadies, I couldn't take the burning pain anymore, so I went to the dr.s . She said I had a yeast infection and put me on 3 weeks worth of Diflucan. After only 2 pills the pain was so much worse!!! I can't take it. The absolute worst is the anal burning. I just want to cry constantly. Has anyone experienced this? Ther must be something else wrong w/ me. The pain is so intense...I just can't function at all. Any help would be appreciated.
CommentLadies, I will try to enter this again. I've had a relpse of V V. It got so bad I went to the dr.s. She said that I definitely had a yeast infection. She put me on Diflucan for 3 weeks. I was to take two pills the first night. Well, I have been in agony ever since. The anal burning is the worst. I can't eat or sleep. It's only been 3 days. Something else must really be wrong w/ me. Has anyone ever experienced this? Please comment. The medicine is supposed to get rid of the source of the pain but makes it intolerable? Help please.
CommentYes- I had a pudendal nerve block that was injected on the left side of my lower back spine area. The botox was injected into my inner thigh on the left side as well. All of my issues have been on the left side of my pelvic area. Has anyone had these treatments with success?
CommentSara. When I was really burning, the alternative doctor immediately put me on diflucan 200mg everyday for three months. When I started taking I got worse and worse and he told me to continue as it is die off and you burn more from it, I did not only burn, I had different other symptoms like anxiety, depression, etc. It wae all die off. Anyway, I did not stop and in a three or a month. I felt better and better. If you have to realized though that diflucan is not a miracle cure. You hav to detoxed completely from yeast in your body, especially if yours is systemic that is the reason that why you had a relpase. You have to work with a real holistic doctor how to go about it. I am telling you though that it takes months and even years. There are also a lot of natural stuff. like GSe, Olibve Leaf, Garlic and many, many more. Diet is also important. All this you can make a search in the internet. Good luck, don'd despair.
CommentEsther. Thank you so much for the valuable information you have given me. GSE is a great stuff. I am religiously taking it. I believe unless I compeletly get rid of the yeast in my body (gut ),. it will have a tendency to come back. Appreciate if you find something else that help. please continue sharing. I am going to see my alternative doctor today, and I will ask him instead of estrogen cream, instead Testerone. I heard it help thicken the damage skin as well. Thank you again
CommentSara - have you called your doc and told her this?? I never took Diflucin, only natural antifungals. I don't know what to expect, except they say it is hard on your liver. My husband's doc wouldn't even prescribe it for his toenail fungus. She actually encouraged him to try something natural -- go figure! So, I have him on Oil of Oregano and topical tea tree oil on his nails. It's working! I'm sooo sorry this is happening to you. I remember that horrible burning. IF the doc thinks you have yeast, I would IMPORE you to do something natural. One of the things I and others have suggested. They DO work, especially if it is yeast, and the only side-effect is sometimes the die-off reaction, but that is usually not so bad. AND if you get the die-off, make sure to drink lots of water and make sure you are eliminating (pooping) regularly, because if not you could get a build-up of dead yeast that would make you feel worse. I hope you feel better. BTW, until you get some relief, ice packs help (don't keep them on too long). JUST for now, maybe some hydrocortisone cream (used a little while will not hurt), or even Prep. H type cream for anal. I have used a yeast cream (just a little) while taking the GSE. It seems to help the external burning/itching. Just a little bit will help a lot sometimes. If you can get to the health food store-- they would have some type of soothing cream that would help, I'll bet. Something with camomille in it maybe. Hope you feel better. I'll try to think of something else. I tried all sorts of things when I was at my worse... I know how bad it can be. esther
CommentDear Jenny & Esther, Thanks so much for the advice. Tomorrow I sey to see a Dr. in Syracuse that uses a holistic approach to V V. I'm surprised I got the appointment. I was crying so hard, I could hardly get the info out that they needed.I told my friend that I think the Diflucan is making me depressed. All I do is cry. For the last two days. I try to stop but the tears just keep coming. This pain is just the worst thing I've ever experienced.Thank you all so much for giving me hope. I'll let you know how I make out w/ the new doc. BTW is there something wrng w/ this site? I have to scroll left to right to read anything. The logo keeps getting in the way too. Is it just my computer?
CommentThe same thing is happening on my computer. It's very annoying. Good luck tomorrow. Hope you'll be painfree very soon.
CommentHi there fellow sufferers!! I have just been diagnosed with VVS today after a WHOLE YEAR of tests,swabs,blood taken even tested for stds! operations (a laparoscopy). And to think i used to be shy about havin smear tests thats nuthing to worry about now!! I have talked to so many people about this and it is so frustrating coz noone understands until theyve been there. The pain started after i had a chest infection last August treated with antibiotics which led to wot i thot was thrush so the doctors treated me for it to no avail (pessarys oral tablets creams etc). I began to realise this was not thrush after months of medication and kept going back to the doctors for examinations. Still nothing was found so i was referred to the local gyn and they suggested i go for a laparoscopy operation -which involves inserting a camera thru ur tummy (under anaesthetic) to check ur tubes ovaries etc but they found all was normal. I actually SELF diagnosed myself on the internet last week and told the doctor wot i thot. They did the cotton bud test and now i have been prescribes with antidepressents AMITRIPTYLINE which i am not very keen on but will try. Has anyone else found that these work? Doctor thinks these will help to treat nerve pain. Also does the oxolate diet work? My VVS is localised and it is only painful on contact(tampon/intercourse). So i guess i should consider myself lucky because reading some of ur stories it can be a lot worse. My partner has been very patient and understanding throughout this last year and we still manage to have sex although it is painful on entry. But we do our best! My advice to all of you is we all know our OWN BODIES and we know wen sumthing is WRONG! The doctors kept telling me everything looked fine and tests showed nuthing!! But i knew there was sumthing going on down there. So KEEP AT IT PERSIST ITS NOT IN UR HEAD and DONT GIVE UP!!! I saw 6 different doctors and none of them knew wot my problem was, i told them last week i thot i had VVS and i was right! So TRUST your own instincts!!!! Finally i know wot my problem is and its such a relief to have a name put to it. Reading ur comments has made me feel better and i know im not alone now. I am hopeful this will improve. Please reply or share if u have had similar experiences. I will check this site in a few days. Thanks for ur inspiration girls!! Luv Kiara Does the oxolate diet work?
CommentHi there fellow sufferers!! I have just been diagnosed with VVS today after a WHOLE YEAR of tests,swabs,blood taken even tested for stds! operations (a laparoscopy). And to think i used to be shy about havin smear tests thats nuthing to worry about now!! I have talked to so many people about this and it is so frustrating coz noone understands until theyve been there. The pain started after i had a chest infection last August treated with antibiotics which led to wot i thot was thrush so the doctors treated me for it to no avail (pessarys oral tablets creams etc). I began to realise this was not thrush after months of medication and kept going back to the doctors for examinations. Still nothing was found so i was referred to the local gyn and they suggested i go for a laparoscopy operation -which involves inserting a camera thru ur tummy (under anaesthetic) to check ur tubes ovaries etc but they found all was normal. I actually SELF diagnosed myself on the internet last week and told the doctor wot i thot. They did the cotton bud test and now i have been prescribes with antidepressents AMITRIPTYLINE which i am not very keen on but will try. Has anyone else found that these work? Doctor thinks these will help to treat nerve pain. Also does the oxolate diet work? My VVS is localised and it is only painful on contact(tampon/intercourse). So i guess i should consider myself lucky because reading some of ur stories it can be a lot worse. My partner has been very patient and understanding throughout this last year and we still manage to have sex although it is painful on entry. But we do our best! My advice to all of you is we all know our OWN BODIES and we know wen sumthing is WRONG! The doctors kept telling me everything looked fine and tests showed nuthing!! But i knew there was sumthing going on down there. So KEEP AT IT PERSIST ITS NOT IN UR HEAD and DONT GIVE UP!!! I saw 6 different doctors and none of them knew wot my problem was, i told them last week i thot i had VVS and i was right! So TRUST your own instincts!!!! Finally i know wot my problem is and its such a relief to have a name put to it. Reading ur comments has made me feel better and i know im not alone now. I am hopeful this will improve. Please reply or share if u have had similar experiences. I will check this site in a few days. Thanks for ur inspiration girls!! Luv Kiara Does the oxolate diet work?
Commentsorry didnt mean to put my message on twice!!! oops im 27 and live in UK. FANTASTIC SITE!!
Commentto JA ON 29 JUNE 2005 YES YES AND YES my vulvar pain started after acourse of antibiotics for a chest infection. doctors sed it was thrush at first and now a year on i have jyst been diagnosed with vulvar vestibulitis... I wonder wot the connection is? Any thoughts anyone?
Commentto JA ON 29 JUNE 2005 YES YES AND YES my vulvar pain started after acourse of antibiotics for a chest infection. doctors sed it was thrush at first and now a year on i have jyst been diagnosed with vulvar vestibulitis... I wonder wot the connection is? Any thoughts anyone?
CommentTo Kiara: Some women think birth control pills were the cause of their vulvar pain, others like yourself see a connection between antibiotics and the onset of pain. Maybe there is something to both the theories but the medical experts have not made the connection. There needs to be much more research to establish the cause or causes and until then you might be right that the antibiotics started something in your body but now what can you do to break the cycle of pain and symptoms? My wife used "The Pill" for twenty years without a problem. When she took antibiotics she would get a yeast infection and she occassionally got a urinary tract infection but it was not until she stopped 'The Pill" that she developed the recurrent tear on her vulva. Was "The Pill" the cause? We just don't know. Maybe years of the medication finally caused damage that just won't heal. Some women think hormones or genetics are the cause of their pain and other symptoms and maybe they are right too. I wish you along with my wife and all women who suffer from this illness get answers and relief. No one should suffer as you women do. Best of luck.
CommentI have had vulvodyia for over 7 years, I would like to share my latest treatment with everyone interested. I am using emu oil, along with Neurontin prescription medication. Works very well for me.
CommentJoyce- I am currently using Norpramin, a tricyclic antidepressant and Vitamin e oil of 56,000 iu to get my vulvar skin in better condition. Are there any better benefits of the emu oil or at what strength do you use, as I've seen it to be expensive. The vitamin e oil at 56,000 iu is about $14.00 at GNC. Was this approach recommended by a physician? Mine was suggested by advice on this website, although my Dr. said to do what I was doing because I feel better and looked okay at last exam. Just wondering how you got to where you are and at what suggestion. Thanks.
CommentMy history starts in 1974 with a diagnsis of a "tipped" uterus. I'll omit uneccessary words. 1976 1)5-10 yeast infections in 3 years. 2) constant yeast infec. resistant to commonly perscribed persc. drugs 3)Bacterial vaginosis /Flagyl for one month 4)endometriosis, surgery (large cists removed and reconstruction done Danazol for 8 mos. itchin burning irritation 5)itching burning and irritation continues, esp after intercourse dianoses w/vulver vestibulitis ) Triominicone (sp?) cream. no relief 6) 1993. Successful pregnancy with a C-section (healthy baby) 7) Gyno that diagnosed VV moved new one says repeatedly "I can't see anything so I don't know what to do" Prescribed all kinds of steriods and hormone creams. tried Diflucon along with anti-yeast diet. Relief, then setback after the 6 week course of treament ended. 8)lack of mensus along with hot flashes (age 42) hormones test "normal" 9)gyno retires. New one is old one who diagnoses me with vv many years before. recommended surgery. I declined. suspected lichen scholroses (sp) I refused the biopsy based on the fact that there was not a posssible treatment option if it proved to be correct. 10) gyno moved again 11)acupuncture and herbs, limited relief 11)plain yogurt inserted gives short term relief 12) acidopholus inserts, much relief 13)boric acid inserts, even better than acidoph. and a lot cheaper. 14) three-lac, limited relief, then setback 15)hemmoroids, steriods, no releif 16) capsaicin cream symptomatic relief for vaginal itching and hemmeroids. Capsaicin drops (ingested with water), mensus returns, now normal with no cramping (used to be horrific) age 46. I now have slight itching occassionally. Whole days go by when I don't even have to worry about my vaginal health. When I itch, boric acid and capsaicin cream eliminate it entirely. Not exactly cured but getting closer. I eat no sugar, few carbs and don't drink alcohol. If I do any of these things I have a very bad itching and burining reaction and sometimes I get and actual yeast infection. I'm sure many of you will relate to many of my symptoms. I'm just posting to let people know what helped me. I never tried SUMA or emu oil but almost everything else there is.
CommentCan anyone recommend a good V specialist in Arizona? Thanks
CommentTo Frank, thank you so much for replying to me so quickly! I didnt expect anyone to reply. Has ur wife ever had antidepressants amitriptyline to help with her symptoms? My doctor prescribed me with them for my vulvar vestibulitis. Im just starting to take them so i dont know if they work yet. Has anyone else ever tried antidepressants? Theyre supposed to help with the nerve pain. Frank i dont think the Pill had anything to do with my vv because i was on it for 2.5 years before i noticed any pain. Dont know yet wot caused it. Thanks for ur advice and hope your wife feels better soon. Kiara
CommentTo Kiara: When my wife and I went to see dr. horowitz the resident vulvodynia expert here in CT several years ago he suggested Elivil to calm the inflammed nerves. My wife's mom suffers from depression and my wife remembers her mom taking medications including Elivil. Her memories were not good ones and she did not want to experience the same effects as her mom including the unwanted weight gain. Please don't let that stop you from trying medications like Elivil or Neurontin, I have read here that many women do get temporary relief from these meds so consider trying them under a doctors supervision. Expect an adjustment period where you might be very tried or sleepy and of course the weight gain is a trade off to get rid of the pain.I can see the connection between inflammed nerves and inflammed skin but when the skin starts to thin and tear I just think it is more than a nerve problem. If you have some time go back to Guestbook Thirteen or Fourteen and skim through the posts you will find all sorts of references to the medications. I've noticed that while some of the same ladies from back then still post there seems to be more and more women finding this site and posting. I'm always hoping to learn more that might one day lead me to an answer. Best of luck.
CommentDear Members: Went to a new dr. today. She was a "supposed EXPERT" on vulvodynia. She wanted to do a biopsy on the irritated tissue. I said "no" . I'm in too much pain. I did let her use a child's speculum to do an internal. It was really bad!! I hurt SO much. Then, I get home and I'm bleeding!! It feels like she cut me or something. I called them back and they said it was normal for women my age(58) to bleed after an internal due to atrophy and dryness. I NEVER bleed after internals!!! EVER. Even yrs. ago when I was at my worst...I never bled! Have any of you ever had that experience? I'm freaking out here, man. Not only am I raw and red and can hardly walk, but am still bleeding after 6 hrs!!! (not much....just drops every now and then.) Why on God's green earth do I go to dr.s? I read once..."Don't go to Dr.s...they tend to make you sick." I laughed at the time...now I'm not laughing. Should I continue panicking?..Go to the emergency room? Wait..there's dr.s there!!! :) What do you members think?
CommentTo Sara: I've been posting here way too often, but please don't hesitate going to the emergency room if you have any doubts. The doctor may have disturbed some scar tissue or inadvertently done something else to cause the bleeding, get an answer and don't be shy gettting help. Best of luck.
CommentHi, I was diagnosed with VVS in June 2002. I discovered something was seriously wrong with me on my wedding night. Thankfully I have a very understanding and supportive husband. I have a great specialist, but I am still in pain. I take Elavil every night and it helps me sleep without pain. I sometimes use EMLA cream (especially in the summer). I want to get in touch with other women around my age who have experienced a similar degree of pain. I am 30.
CommentHi All, Well I am 21, and was diagnosed with vulvar vestibulitis about 5 months ago. I have had it for as long as I can remember, I just kept putting off going to the doc and hoping it would fix itself. The first time I tried using a tampon it was agonizing, so I just used pads. Then I came to my teenage years and my first experince trying to have sex was horrible, and I couldn't even explain to my boyfriend what was going on because I had no idea what was going on. And from then on intercourse was not an option in any relationship of mine. When I finally got around to mentioning to my doctor, she did a pelvic exam and referred me to a specialist. It seemed to take forever to get my referral though because I had moved, but when I finally got to seeing the specialist she diagnosed me right then and there. She put me on this estriol cream (0.5% I think) and then told me to come back in three months and then we would start on these vaginal insert dialotors. The inserts are actually pretty interesting. They are made from wax and come in about 6 different sizes and you start with the smallest one and then graduate onto the next one once you can successfully insert the one before all the way without any pain. Im still on the smallest one, it's a little bigger than a tampon, and I really see no end. I am getting discouraged and then I started reading about all these other treatment options. I am definately going to do some intense research before I go back to my doctor. I'm just at a point in my life where this is really frusterating me. I know there is no quick fix, but I wish there was. Has anyone else had experience with the inserts??
CommentDear Frank, Thanks for the response. The dr. called and sent me some steroid cream at the pharmacy. What for? I don't know. Does that stop bleeding? I'm still bleeding...not hemorraging , just spotting. I've had a hysterectomy, so this is just vaginal bleeding. I'm in rough shape pain wise..can't seem to get the pain to go away. It's almost doubling me over.
CommentDear Frank, Thanks for the response. The dr. called and sent me some steroid cream at the pharmacy. What for? I don't know. Does that stop bleeding? I'm still bleeding...not hemorraging , just spotting. I've had a hysterectomy, so this is just vaginal bleeding. I'm in rough shape pain wise..can't seem to get the pain to go away. It's almost doubling me over.
CommentDear Frank, Thanks for the response. The dr. called and sent me some steroid cream at the pharmacy. What for? I don't know. Does that stop bleeding? I'm still bleeding...not hemorraging , just spotting. I've had a hysterectomy, so this is just vaginal bleeding. I'm in rough shape pain wise..can't seem to get the pain to go away. It's almost doubling me over.
Commentto Frank thank you again for your response. I really appreciate it. I will try the prescribed amitriptyline 2nite for the first time and will let you know how i get on. I have only been using this site for a few days and already i am finding it a great support. It is such a relief to find other people who are going thru the same stuff as yourself. I was only diagnosed with vvs a few days ago. Thank you everyone for sharing ur experiences.
CommentTo Sara: Please don't assume either your bleeding or the intense abdominal pain are connected with the examination you had. The body is very complex and it just may be a co-incidence that you are having these symptoms after the doctor's visit. There are a dozen reasons for pain in that area, you may have a problem with your bladder, kindeys or intestines. Please go to the emergency room if the pain does not let up soon. Better to be safe that sorry.
CommentJESSICA. can you tell me youre experience with Estriol Cream. Do you think it help ease the insertion of the dilators or when you used it did you pain and symptoms got worse. Apreciate your input. Did you even analyze medical life history. Were you and constant antibiotics or cortisone when you were young. Doea any of your family have an autoimmune disease. Did you take birth control pills. Your answer to this will be apppreciated. Once you have given an answer to all these, it will much easier to get advise from us.
CommentHi Mary, Well according to my doctor the estriol cream is working. When I first went in when she touched the area with a cotton swab I said the pain level was 7/7, after using the cream for about 3 months I said the pain upon touch was about 2/7. It is a really slow process and I think the cream is working but I still am only able to use the smallest dialator. I put lots and lots of lubricant on it which makes it easier, but I still feel too much pain when I try the next one up. My doctor has told me to stick with it, apparently she had a patient who had extreme vulvar vestibulitis and she used the estriol cream and the dialators and she just had a baby, naturally. So, my doctor wants me to try this method for a little while, but it may not work in my case. I'm not giving up on the dialators or cream yet, I know they are working....it seems like some days the pain is worse than other days....that is something else my doctor is looking into. But I'm crossing my fingers. I think the cream has definately helped. As for family/medical history, I answered no to most of those things, and I only took birth control pills briefly because I soon found out that intercourse was impossible. Thanks for your response Mary. What if any treatment are you using??
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CommentHi. Someone wanted the name of my Dr. at the Mayo Clinic, It is R. Stewart Fowler - Need anymore info, feel free to email me.
CommentHi i posted a few days ago for the first time. Just diagnosed with vulvar vestibulitis (contact onlyeg tampon/intercourse). My gyn prescribed me with AMITRIPTYLINE antidepressants and i have just started taking them. Just wondering if any other women have had experiences with them and did they WORK or NOT? Ur feedback would be appreciated. Thanks also email if u want. good luck to everyone and i hope 2day is a GOOD day!
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CommentFrank. Did the estrace help your wife from getting tear and custs in the vulvar area. Did she get more discharge. pain and intching from using estrace. Thanks Frank. Your answer to this will help me a lot with my decision whether or nor to use Estrogen Cream in the vaginal ara. I just saw my alternative doctor and he told me the estrogen enormously increase the yeast in the vagina if it was applied vaginally. Thanks Frank
CommentTo Mary: I'll tell you my wife's experience with Estrace but remember it does help some women so consider trying it for a few weeks. My wife used Estrace for about a month prior to surgery to form a new scar in the area where the tear reoccurs and about six or seven weeks following the surgery which also repaired a rectocel and reattached some muscle tissue. This was about four years ago but I don't remember her getting a yeast infection. The very first time we had sex following the surgery, Estrace and seven or so weeks of healing the tear opened at the same six o'clock position. She used to get occassional tiny paper cut like tears in the folds of her labia and raw patches of skin on her clitoris. This seems to have stopped for the most part but the tear is always a problem. Sometimes she will just move a certain way and it will tear even if we are not having sex. The skin is just very thin and fragile in that area. I think the Estrace did not help her because she is not deficient in Estrogen. One point of interest I would like to mention is that while watching the t.v. program C.S.I. they mentioned that trauma to the six o'clock position of the vulva indicates rough sex. It bothers me that some doctors who do not understand this illness would think I'm some kind of brutal animal with my wife. That of course is not the case, I have pretty much always made sure she was lubricated prior to intercourse. I love her and would not rush her and cause harm but lack of lubrication is not causing the tearing either. Well, sorry to get away from your question but if I was you I would risk a yeast infection if there was a chance the Estrace would heal my injuries. Best of luck and let the board know how things turn out. Frank
CommentFrank: Thanks so much for you very clear explanation. Yes, I will try it. Though my doctor is shifting me to Estriol which he said is much, milder. This whetjher yo are deficient or not in Estrogen. This cream, helps thicken and strengthen the skin. I will try if for a couple of weeks and see wha happens. You are very helpful Frank. all of us on this Board appreciate you sharing your experience and knowledge. May you and your wife find a cure and solution to this problem.
CommentIn response to the person who needs help finding a Dr. in Phoenix Arizona Dated 8/12/05, I would like to suggest Dr. Fowler, Mayo Clinic, Scottsdale. I have seen Him several times, and he is well informed on many subjects relating to this matter. Give him a try, A well informed Dr. seems to be hard to find. He actually was my forth try in 6 months.
CommentHi- I haven't been diagnosed yet. I go see a V specialist at the end of August, but just by doing my research, i know this is what i have. I don't have painful intercourse, so i think i have generalized vulvodynia. I do have a question about clitoral pain. Lately, it has been feeling very sensitive. Not pain, but definitely not pleasure. It is very uncomfortable. It feels better when i put my finger on it and just press it. Does anyone else ever have strange clitoral sensations. If so, is there anything i can do for it in the meantime. Any suggestions.comments would be appreaciated. I'm very scared. I'm only 27 and i just got married. I cry all the time. I just want to be happy with my husband. Thanks so much.
CommentHi- I forgot to add, my clitoral sensitivity often starts after I urinate. Is that weird?
CommentHi Leah: I've had the clitoral sensitivity before too. It just went away on its own. I hope the specialist you see will be a good one!!!! Sue
CommentDear Leah, I, too, have had the clitoral pain. It stops me in my tracks. I've figured out that it happens after I urinate after sitting in slacks for a long time. Something that helps that particular pain is Vanicream. It is a product you can get at the pharmacy. If they don't have it, they can order it and get it the next day. The Vanicream is a special moisturizer for hypoallegenic people. I am allergic to everything and it doesn't bother me a bit. Soothing and cooling. I cry a lot too so don't feel weird. This condition is REAL strange. E-mail me personally if you like...you are not alone!!
CommentTo Jessica, I have also used the inserts (dilators), but mine are made of a rubber sort of material. They are really way to long, which I dislike. I would like to know what brand yours are. I would be interested in checking into them. I think the process is a really slow one to stretch the skin. Not sure I have stayed with it long enough to see any diff. If they were about half the length it would be so much better. Mine are about 5 to 6 inches long. THe dilators don't help with the ripping of the skin on the inside. The doctors cant figure out why I do that. I am on lots of estrogen cream and I don't see much improvement . What is estriol cream? Could it be estridol cream?
CommentI have a yeast infection. I am using Monistat 3 - my question is, is it supposed to burn ?!?! I'm in more pain than I was before I inserted the capsule !! Any advice is appreciated.
CommentI've had vulvodynia for almost a year and nothing worked until I went to see a holistic healer (naturopath). She explained to me that the reason women get vulvodynia is because their bodies' are lacking something. In other words, physicians may suggest anti-depressants, surgery, creams but that covers up the problem--puts a bandaid on something that should be treated from the inside out. After a few sessions and asking me many questions about my symptoms and my overall health, she put me on Vitamin C, B, calcium citrate and probiotics. Also told me to avoid the foods with oxalates. My pain started to lessen after a couple of days! I urge everyone that hasn't tried it, to seek out a registered naturopath or holistic health practioner before trying anti-depressants or surgery! They will take your heathl history into consideration, along with your current habits. It may take longer and probably isn't covered (which is very sad), but it is very worth it in the end! I hope this brightens someone's day because I found that's what helped me, knowing that there is possible treatment out there that WORKS!! Good luck!
CommentI've had vulvodynia for almost a year and nothing worked until I went to see a holistic healer (naturopath). She explained to me that the reason women get vulvodynia is because their bodies' are lacking something. In other words, physicians may suggest anti-depressants, surgery, creams but that covers up the problem--puts a bandaid on something that should be treated from the inside out. After a few sessions and asking me many questions about my symptoms and my overall health, she put me on Vitamin C, B, calcium citrate and probiotics. Also told me to avoid the foods with oxalates. My pain started to lessen after a couple of days! I urge everyone that hasn't tried it, to seek out a registered naturopath or holistic health practioner before trying anti-depressants or surgery! They will take your heathl history into consideration, along with your current habits. It may take longer and probably isn't covered (which is very sad), but it is very worth it in the end! I hope this brightens someone's day because I found that's what helped me, knowing that there is possible treatment out there that WORKS!! Good luck!
CommentLeah: I, too, had clitoral pain just as you described. I had this deep throbbing intense sensitivity that just wouldn't go away. Like you said, NOT pleasurable! Once I figured out my problem was yeast and started to treat it, it started getting better, along with the pain in the vulva area. I thought I had the wierdest symptom IN THE WORLD until recently one of my health shows I listen to had a man who called up and said his doctor said he had a yeast infection on his penis. His symptom was.... guess what? Pressure/sensitivity in the head of his penis! I nearly laughted out loud -- not at the poor man, but at the similarity! So.... it's weird, but not all yeast is itch or burning (although I had the burning on my vulva too), it is sometimes a pressure/pain feeling also. START trying something for yeast. I have commented much about what I used, along with several other ladies here. Probiotics (Healthy Trinity, Threelac, etc), Grapefruit seed extract or Olive leaf or Oil of Oregano are good choices. Also, calcium citrate w/ magnesium is a good supplement also in case you have oxalate sensitivity. We need the calcium anyway so it doesn't hurt. Just make sure you take the probotic and the antifungal at least 2 hours apart of each other. Good luck and don't think you're the only one -- this condition CAN be beat! I have beat mine 85-90%! Sometimes I get a little irritation, but it's nothing like it was at first. I thought I was going crazy until I could figure out what was wrong with me! Three different doctors couldn't figure it out.... this website is what put me on the right track! I thank you all! esther
CommentThank you all for your replies. Esther- Regular yeast? Systemic yeast? I have been to the doctor's and they said i had no yeast. Well, actually, my doctor did a culture and said it looked like yeast, but it came back negative. He said he did a DNA test too or something like that and everything was normal.
Commentthe last time i went to my doctor i mentioned something about systemic yeast, and she said that there really wasn't any science to back up the theory. i was really confused after hearing so many people say that they had it and beat it. Is it real even though doctors are saying it isn't? how can that be? also, how does it develop in the first place? i never took ANY antibiotics or anything so i'm confused, but it seems like it might be the only answer. PLEASE write back.
CommentSome Drs. believe in systemic yeast, but others don't. According to Dr. Weil, if you had systemic yeast you'd be critically ill. Naturopaths often tell women they have systemic yeast infections.
CommentHi Everyone, My sister in law is a nurse practitioner--she gave me an article on yeast infections both typical and atypical yeast was covered. Like many of you have tried, the article recommended trying boric acid 600 mg for 14 nights. I've gone to two vitamin/health food stores and cannot find boric acid. Any thoughts on where I can purchase this? The article explained that chronic vulvovaginitis/pain etc..can result from atypical yeast infections never being fully eradicated from the body (as many of you have posted here). After another disappointing doctors appointment with yet another ob/gyn--I would like to try the boric acid. Thanks for your help.
CommentLeah: I would say maybe "atypical yeast". I, too, had a vaginal swab as soon as I came down with this horrible problem. It was negative. But... in some of the earlier guestbooks a lady was suggesting getting your vulva swabbed for yeast. I never did that, because I thought I didn't have it. I don't think it is systemic yeast, because apparently if you have that, you will have many other disorders. However, I will just simply tell you.... the only thing that helped was stuff intended to get rid of yeast. You CAN get yeast on the vulva area and not necessarily in the vagina. I never knew this before now. It was only when my rectum started to itch (I guess from wiping from front to back...) that I made the association of yeast. Having said that, let me say that I DO believe there are OTHER reasons for this problem. However, I couldn't find one for mine, and once I started taking the anti-fungals, I started getting better. Having had three doses of antibiotics in one year, the concept of having candida (yeast) overgrowth made sense to me. (You know we all have normal amounts of candida in our colon all the time, it's the overgrowth that's a problem!) That's also where probiotics come into play. They are wonderful for replacing the beneficial bacteria, which not only fight yeast overgrowth, but also help with digestion tremendously. I have heard that most every disease STARTS in your colon. So it makes sense to have your colon working properly. Works for me.... Good luck - hope I answered your question! esther
CommentTo maa: My wife has used the boric acid suppositories two or three times and she had them made up at a pharmacy that compounds medicines. Her doctor wrote a prescription for them and the pharmacy made them up.
CommentHere is a thought to ponder (a bigger picture): Drs and drug companies are obviously in some sort of "business" together. You have reps calling on drs and if a dr likes a certain rep, then they will give their product out as samples or write a prescription. Now, if "systemic yeast" were a problem, as it seems to be in most cases and you could "cure" yourself by taking health supplements, then boom, women with vulvodynia don't need all the drugs these drs are prescribing. Catch my drift. It's all about business, that's what makes the world go round!!! Not that it's a bad thing...but just something to think about. My dr. has had me on boric acid supplements for 3 months straight...when I'm on boric acid, I don't have the severe itching I had last december. He wants me to continue taking it for 6 months. I definitely think I had some sort of systemic yeast. Half the Drs don't know what they are talking about...we all have these symptons and NONE of these creams, anti-depressants, etc are working. I was on elavil, did it help...not one bit!!!! No, I only gained 5 pounds and felt like shit for 3 months until I took myself off of it. They are so quick to shove medication down your throat and so quick to cut you and give you surgery...why, because that's how they make their money. So ladies, please, do research, try alternative approaches, don't believe everything you read, and only half of what you hear.
CommentIf you want to make your own boric acid suppositories (which is simple and MUCH cheaper than having a pharmacy do it for you and its the SAME THING) then go to Wal-Mart for the boric acid. You find the jar in the first aid section with the antibiotic creams etc. It says its a poison, dont eat it!!! Then go to the health food store and buy empty gel capsules size 00 and fill them loosely with the powder and insert vaginally. I bou a huge bag of caps when I am there and havent run out yet. I was so afraid to use them at first seeing as how the jar says its poisonous and all but thats because if you ingest it it will kill you. Boric acid is gentle enough for your eyes. Also at Wal-Mart in the pharmacy on the eye care isle you will find a boric acid eye wash, just so you know how gentle it is. It's all I use for yeast infections and it works wonderfully and I always make my own. No prescription needed. Treat orally as well with some GSE or Oregano oil. Oregano oil is HARSH so if you are new to things like this, start with the GSE and start slow and work your way up. Also read online about alkalizing your body.
CommentDo you have to ask your doctor to test for atypical yeast or is it something they do anyway?
CommentMy daughter has been suffering from vulvodynia since 2002. She has tried everything, even surgery.Nothing helped. Can anyone give me information about Interferon Injections? My daughter has just startet with these injections. They are hell, cause swellings. Should she continue oder will things go worse? What are the side-effects? Has anyone had success?
CommentMy daughter has been suffering from vulvodynia since 2002. She has tried everything, even surgery.Nothing helped. Can anyone give me information about Interferon Injections? My daughter has just startet with these injections. They are hell, cause swellings. Should she continue oder will things go worse? What are the side-effects? Has anyone had success?
CommentDo you have to ask your doctor to test for atypical yeast or is it something they do anyway?
CommentI went to walmart and didn't find any boric acid--I tried CVS, walgreens, target, vitamn world, and another health food store. Any thoughts???
CommentI've been to walmart, walgreens, target, cvs, vitamin world and another healfh food store. I can't seem to find boric acid--any thoughts? Also, what can be used instead of boric acid? I know many of you have posted on this--but it isn't always clear what can be used with what--and what should be used for what. Thanks!
CommentTo maa: There are several internet sources that sell boric acid if you cannot get it locally which I find unusual. Boric acid is a very common product. There is no substitue that I am aware of. When I did the internet search there was a very good site that talked about the use of boric acid suppositories. Please try the internet and certainly go back to the stores you mentioned and look again. Best of luck.
CommentLIZ MACK: Hi, Sorry it took me so long to reply. Well my dilators don't seem to have a brand or name on them, it just says the name of the pharmacy on the box, and it's not a chain or anything. I like how they are made of wax, and I don't find them too long at all. I checked and the cream I am using is called estriol. I am using .5, and it is an estrogen cream. It seems to be working a little but I've been using it for 6 months and I still can't get past the first dilator. You're right, it is a slow process.....and I am starting to get frusterated......Good Luck to you and let me know if there is anything else I can tell you that may help your situation. How long have you been suffering from VVS, if you don't mind me asking?? And have you ever tried any other treatments?? Jessica
CommentAll Wal-Mart stores carry the same products. They go by guidelines when stocking their shelves. You will find Boric Acid in the first aid section which is usually in Health and Beauty department. If it was not there then they were simply out of it or you didnt know what to look for. Ask someone in the pharmacy to show you where it is. Wal-Mart stores ALWAYS carry it. Coming from someone who worked at Wal-Mart as a pharmacy tech for 5 long years. Its in a white plastic bottle. They usually carry the same brands as well. Mine has a light green label on it and its by Humco. Its on the same isle as the alcohol. peroxide, bandaids and antibiotic creams. You also may find it in the aisle where the bug killers are since its also used as a killer for roaches. Just make sure its boric acid powder with nothing else in it. Mine actually has a warning on it that says if you get it on the skin to flush with water. Why? I dunno. I got it in first aid. It also says to avoid the mucous membranes. But this product has been used forever for yeast infections and it hasnt hurt my vulva/vagina at all and apparently noone elses whose doctors recommend it for yeast.
Commenthttp://www.koolpages.com/hokuspokus/boricacid.html
CommentDoes anyone have the intense anal pain and burning with V V? That is my worst symptom. It seems that if I could just get rid of that, I could tolerate the vaginal burning and discomfort. I was tested back in 2001 for hemorroids, etc. but all came out OK. I was just wondering if I am the only one that has the anal symptoms? Reply personally please if this format is too public. Address is above. Thanks
CommentLeah - I honestly don't know the answer . Since I didn't have my doctor test me for "atypical yeast", I can't say. Maybe there are even doctors who don't believe in it.... who knows? The girl who posted it several books back just said, "Have them swab your VULVA and not just your vagina." Like I said, I didn't do it...because I didn't think that was my problem at the time. I'm sure it was now, because the anti-fungals are the things that have helped me. EVEN if you get a negative reading, I wouldn't necessarily accept that. You can get negative tests and still have candida overgrowth. I would suggest you do some more research and go to some websites that talk about candida and yeast overgrowth. They are a fountain of information. esther
CommentI wanted to add one thing about boric acid - more specifically the capsules you use to put them in. Be aware that the capsules you use can irritate you depending on what they are made of and, of course, how you individually react to it. I used to use boric acid and it helped me a few years ago but I noticed that when I used it again recently I got really irritated. I am thinking that maybe it was the CAPSULES I was using and not the boric acid itself. Some of those capsules are made of cellulose and other "fillers" and I am betting that they COULD bother those of use who are very sensative.
CommentJessica, I have had this since 1986 after I had a complete hysterectomy. Then because of the lack of estrogen the skin down there kept tearing at the 5 and 7 position. I have had 4 surgeries trying to correct the skin. I have used every type topical cream you can think of. I have also had one bartholins gland removed due to a cyst. I have been married for 30 years to a wonderful man, luckily. We had been able to have sex only 2 in 3 years. It is the most excruciating pain you can imagine and I rip now on the outside and on the inside it almost tears the skin out of me and then I bleed for a week. It is awful. The last Dr I went to wants to do what is called vaginal advancement which removes ALL the vaginal skin and replaces it with new skin. Where they get that skin I don't know. I don't think I am up for that. I am shrinking and that is why I use the dilators (sometimes) I am just really tired of it all after 18 years and sometimes do nothing more than use estrogen cream, emu oil and cortisone cream. I just think if I could thicken up the skin and stretch it out I won't need to surgery. I have gone to too many Drs to count and they are all stumped. No yeast, no infection, only inflammation and atrophy(no estrogen). I don't get it. But I keep praying I will come across something that will work. It is really messing with my head and my husband and I would have a much more enjoyable life with Real sex included, if you know what I mean. I wish you could give me more info on the wax dilators. I would like to check into them. WOuld your doctor know? ISn't that how you got them, thru a prescription? Let me know and good luck. I am not a good one for positive results. 18 years of trial and error isn't a very good track record. I can even have a bowel movement and the pressure of that on the skin inside will make it sometimes rip and bleed. A real bummer. Take care and let me hear from you.
CommentLIZ - Hey Liz, you're gonna love me. I found out that my pharmacy has a website where you can order things online. Anyways I did not need a prescription for the dilators. So go to this website to check them out: www.laurelprescriptions.com. Click on the women's health link on the left side. And then it will take you to a page and the dilators are located under the Health heading. They call them vaginal inserts. You can order them online, it even shows a pic and gives some info on the product. I think the price includes shipping and handling because I think I bought them for like 30$. The pharmacy is located in Vancouver, so the prices are in Canadian dollars. Where are you living?? I hope this helps, atleast now you can get some info on them. Thanks for sharing your story with me, it sounds like you've been through A LOT. And I know it gets frusterating, I'm 21 and have never been able to have REAL sex. The few times I tried it was beyond excrutiating. You are lucky to have such a supportive husband, I hope I will be able to find someone like that. My Dr tells me I have to stay positive, but it's hard. Anyways let me know what you think of the dilators and if you decide to get them. Stay strong. Jessica :)
CommentHello to you all, it has been some time since I have posted not because I have gotten better unfortunately but mostly just to preoccupied with other things and intentionally so. I hoped that if I stopped thinking about the problem all the darn time, it would help me cope at the least. Come October I will have had Vulvar Vestibulitis for two years with no relief of anything I have tried. Unfortunately my most recent setback was my own fault, I had stopped taking birth control pills in June 2004 and had noticed improvement and more so when I stopped taking all medications since they only made me dippy. I was at 60% but still not able to have intercourse but had noticed that my body was self lubricating again, the first in a year and a half. I opted to try inserting NuvaRing in the hopes that the hormones would help with the assurance from my GYN that it would not put me back to square one if I had an adverse affect. I should know better, I should know that I know my own body better but I was and am still desperately hoping for recovery. So I tried it, I started during the first day of my period as it instructed on the box things were ok until the end of my cycle, it didn't end. Instead of the normal production of fluids I had a brown/white mixture for a week after I should have been back to normal. What was worse I could feel burning where the ring came in contact with my skin. I removed it and have not messed with birth control since, that was back in April, I am still recovering. I was back to square one just as I had feared. The burning and pain returned internally where as before it only bothered me around the vaginal opening and on the vestibule. At my last GYN visit, just before starting the Nuva ring, my q-tip test had greatly improved and I felt so close to being on the mend. Now I am back to recovering slowly. My hair has been thinning all these last two years and my fingernails have been brittle and weak. Taking a multi vitamin has not helped but recently I started on a B-complex vitamin and have noticed my hair loss has greatly reduced to normal levels daily and my nails are stronger than ever. I hope that this will help with the VVS but have not noticed a change as yet, still early to tell. thanks for listening.
CommentAnn, Birth control pills cause yeast overgrowth in the vagina. Estrogen feeds the yeast greatly. If you used Nuva ring whch has estrogen hormones, it obviously will feed your vaginal yeast and it can go out of control. All doctors who believes in yeast, does not recommend hormonal therapy especially estrogen if they believe the problem is yeast. Do yo thnk the NuvaRing aggrevated your symptom. Why did you use it. Were you getting too dry? Be careful. I suggest that you have to treat your problemn systemically as well due to birth control pills usage
CommentI started taking Evening Primrose Oil (EPO) for my skin about a year ago. I thought it might help with the skin on my vulva. I think it has, but also I know it helped my hair and nails. I was losing handfuls of hair (due to stress probably) and could not grow nails. Now I actually have to cut my nails because they grow so much- go figure! It's great. Also helps with PMS and other womens' problems. Thought you might want to try it - esther
CommentHas anyone who has vulvadynia ever had |
