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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 any |
