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Name: Howard I. Glazer Ph.D.

Email: DrGlazer@att.net

 

Date: 23 Oct 2002

Comment

This is the twentieth vulvodynia guestbook. Thank you all for visiting the vulvodynia.com website. Please let me remind you that this guestbook is for comments for new visitors. Ongoing communication is best achieved through use of the live chat rooms and email broadcast lists available through www.vulvodynia.com. Thanks for your continued participation

Howard Glazer Ph.D.

Name:

Email:

Date:

23 Oct 2002

Comment

Here is an article in the New York Daily News that some of you might want to check out. At least vvd is mentioned in the media. http://www.nydailynews.com/city_life/health/story/28883p-27465c.html

Name:

LE

Email:

getting some relief

Date:

24 Oct 2002

Comment

Hi! I wanted to let people know that I am getting some relief from 2 things: an Estrogen tablet that is inserted in the vagina once per week (prescribed by Dr Ledger, NYC) and Effexor (an antidepressant known for having anti-pain properties). I take 75 mg/day. I am not sure which is helping but as soon as I started both my spontaneous burning and stinging went away. Sex still hurts but maybe that is the next thing to get better. Just passing along info. in hopes that it helps someone else......................

Name:

Karen

Email:

karenjs@interlog.com

Date:

24 Oct 2002

Comment

Anyone living in Toronto, Canada? I have been suffering from vulvodynia for 9 months and would love to hear from others in Toronto to share experiences, doctors, treatments, etc.Please e-mail me!

Name:

Marisa

Email:

magongora@hotmail.com

Date:

24 Oct 2002

Comment

I wanted to recommend two books that have made me feel a little better and more knowledgeable. The V Zone: A Woman's Guide to Intimate Health Care by Colette Bouchez Simon and Schuster publishers She has a chapter on our "condition", some stuff we already know, but extensive enough.The V Book: A Doctor's Guide to Complete Vulvovaginal Health by Elizabeth G Stewart, MD and Paula Spencer Bantam Books I think someone wrote about this book before. I really liked reading the two chapters that relate to us. The chapter on Sexual Healing helped me come to terms with how this affects my sex life (or lack thereof). I hope you all benefit in some way from this.

Name:

bec

Email:

Date:

25 Oct 2002

Comment

Has anyone seen Dr. Benson Horowitz in Hartford? Let me know how he is...

Name:

Karen

Email:

Date:

25 Oct 2002

Comment

People seem to be making the whole gene testing much more complicated than it is. All you have to do is contact Witkin's lab at 212-746-3910, ask them to send you the gene testing kit,(they like to send it directly to a doctor but if you ask they will send it to you). Then bring it to your doctor so he can do the mouth swab. (I just brought it to my primary doctor). Then he has to sign it so they can send the results to him,(it's a N.Y. law they have to send it to another doctor and not directly to us). You fill out the paperwork, (very minimal), give them your credit card number, (it costs 150.00) and send it off overnight and within 7 days they send they send the doctor the results and they send you paperwork in case you want to file a claim with your insurance company. That's all there is to it. I go back to my doctor Tuesday to get my results. To me it's just not worth taking the SUMA unless I have the gene. You can waste 150.00 taking the SUMA and not even have the gene, so why not spend the 150.00 to find out.

Name:

Mag

Email:

Date:

25 Oct 2002

Comment

I was just wondering about what happened to the post about the girl who was taking zoloft and aciidophulis and was feeling a little bit better? I, too, am feeling a little bit better from this but i also have urinary problems and was wondering if you did too and what has helped you with this?

Name:

Kristi

Email:

kjmjce@hotmail.com

Date:

25 Oct 2002

Comment

Hi!! I am soo glad to hear that I am not the only one suffering from this horrible thing. I have had this condition going on around 5 years now. Just about 9 months ago, I finally found a doctor that knew what this was and I had to travel to Houston to find out. God bless that man!!! Anyway, he put me on Neurontin, which is supposed to deaden the nerve endings that signals the burning. I've only been taking it for about 3 months.Right now I am taking 400mg/day. If anyone is taking this medicine and can give me some hope of it working, please let me know. I am sooo desperate!!!!!

Name:

Email:

Date:

26 Oct 2002

Comment

Very well said, Karen. No one should take the SUMA without being tested for the gene, and the actual test is completely painless. Not only could it be a waste of money (spent on SUMA, it's $12.00 for 90 capsules), but it could be dangerous if you have a preexisting condition or are taking other medications. Never mind the fact that people who take the SUMA without being tested and then post here that it "doesn't work" are doing a great diservice to others who may benefit from it... It discourages them from taking the test. I guess that's the point I was trying to make all along. Good luck on Tuesday. I hope you find some answers. For me, that test was a lifesaver. I don't think I would have wanted a relationship (just celebrated my 1st wedding anniverary last week) and I certainly wouldn't be pregnant without the help I received. The very thought of sex before...I just couldn't for a long period of time.

Name:

Reesa

Email:

re: BK/ bodily burning

Date:

26 Oct 2002

Comment

BK, I also have had bouts of stinging "sunburned" feeling on parts of my hands and arms. It's usually very localized like in a line from one finger up to my elbow. We probably should research mast cell's becuase I believe it may be related to mast cell activation disorder.

Name:

Reesa

Email:

re: discharge

Date:

26 Oct 2002

Comment

I am beginning to feel that my skin is so irritated lately, due to irritation from the constant, heavy discharge. I never test positive for bacteria or yeast and still have the profuse discharge. My skin recently has become more VISIBLY inflamed - red, etc. Any thougts on this?

Name:

M1

Email:

Date:

28 Oct 2002

Comment

To Karen and others regarding "the gene": You absolutely DO NOT have to order a mouth swab kit to find out if you carry the gene (2,2 allele Interleukin Receptor Antagonist)!!!!! If anyone tries to tell you that you need a $150.00 kit to get the answer to that question - walk the other way!! Get your doctor to write you a prescription for blood work - like they would do for any other blood test - and write up the request to be tested for the gene. I recommend that you call the lab first to be sure they will follow through to be sure the right test gets done (it's not a common one). If you have insurance, they should cover it as if it were any other test. Now as far as SUMA goes - If you have the gene - SUMA may work for you - the people who have been successful with SUMA have had results within a few days - so if you don't get results - and you purchase $150.00 worth of that herb which sells at about $12 a bottle - it's your own fault that you don't know when to quit!! I just had the test done in Philadelphia at Graduate Hospital - I called ahead to be sure that their labs had access to complete the test for me. I found out that I do have the gene. I've already taken SUMA for a month with no results - so SUMA isn't going to do a darn thing for me. I'm out $12 bucks, but other than that - I'm no worse for wear. SUMA is not successful for everyone carrying this gene. My doctor and I are in the process of determining what to do next. The gene/Suma thing has turned into way too big of a deal on this web site!!!

Name:

Email:

Date:

28 Oct 2002

Comment

I didn't pay a dime for my gene test because Dr. Ledger did it for free as part of his study. The SUMA worked for me after a week or 2 of using it, not before. Again, it did not CURE me in the sense that it made the gene vanish, but it did put a stop to the everyday pain and burning that made my life a living hell. Now I only get flare ups after re-injuring the area (ie. an aggresive bike ride, using anything with propylene glycol in it, the surgery I had after my miscarriage). The difference is that I can now control the flare ups and stop them when they occur, whereas before I couldn't. I might even be able to prevent them from ever happening again if I took the SUMA all the time, but I am not big on staying on a medication (even a natural one) day in and day out for the rest of my life. That to me sounds scarey.Anyway, the important thing is no recognize that vulvodynia has many causes and what works for some may not work for others. It's another frustrating aspect of the disease. One other thing for the non-gene ladies:Watch for things with propylene glycol in them. Some gals are highly allergic to that ingredient. It is found in many of today's popular vaginal creams (such as yeast meds and a lot of the creams containing antibiotics like Cleocin). If I get anywhere near that stuff my bottom starts screaming.

Name:

M1

Email:

Date:

28 Oct 2002

Comment

Hey Susan - Is that you posting?? I had the blood test and now know that I have the gene - Suma did nothing for me. I took it 3x daily for 2 weeks - then upped it to 4x daily for 2 weeks. Do you know if Ledger had anything else in the works to deal with this gene? I may ask my doctor to try to get in touch with him. She only ordered the blood test for me because I took the Cornell press release with me and showed it to her. Now that we know I have the gene - she doesn't really know what to do (I did the SUMA thing on my own). For everyone - this gene is not new news it has been named in other inflamatory diseases - it's just new in its association with VV. You should do a little reading on it.

Name:

B

Email:

Date:

28 Oct 2002

Comment

Has anyone here actually had symptoms alleviated from taking Calcium Citrate? I purchased a bottle of Citracal calcium citrate but now am afraid to use it since someone in a recent post mentioned popylene glycol being an irritant for women with our condition and one of Citral's ingredients is propylene glycol. Also, has anyone here ever had a recurring Bartholin Gland cyst? If so, is there any self-help remedy that will make this go away without having to go have it drained or, worse, eventually having the gland removed? One more question, what kind of condoms are best if I want to try sex again? Is there one that isn't an irritant as I know laytex can cause irritation. Thanks.

Name:

Sue

Email:

Date:

28 Oct 2002

Comment

I take a liquid calcium/magnesium product by Tropical Oasis. It's from the health food store. It's never given me any problems. Citracal is hard for me to swallow too.

Name:

LE

Email:

still burning...

Date:

29 Oct 2002

Comment

I recently posted that estriadol (Vagifem) 25 mg tablet inserted in the vagina once per week plus Effexor (75 mg daily) had helped my burning. Well, it has come back. I had about 1.5 weeks pain and burning free and then I got hit by it again. I will keep taking this stuff and see what happens. Just felt obligated to post my progress report. Good luck to all.

Name:

Email:

Date:

29 Oct 2002

Comment

There are too many things that help many of us, but only for a week or two. Maybe, as a rule of thumb, we shouldn't come here and sing the praises of anything unless we get relief for 30 days.

Name:

LE

Email:

Date:

29 Oct 2002

Comment

Sorry but I disagree. I don't think we need rules here of all places.When I post my progress, I was excited and feeling good and wanted to shout it to my friends here on this board. I also felt it was my responsibility to share with them when it stopped working. Let's keep this an open honest place for people to post with good intentions!

Name:

karen

Email:

Date:

29 Oct 2002

Comment

To M1: I am surprised that you have vulvodynia and you don't seem to know who Dr. Ledger is. You say to "walk away" because he charges $150.00 for the test. He is one of the most highly respected OB/GYN's in the country and was named in a national publication as one of the 100 doctors. He is not running some type of scam. There have been so many questions about the gene testing and no one has really spelled out exactly what needed to be done. I had to figure it out on my own and thought I would detail it for others who want to have it done. I was trying to help others whose doctors and insurance company, like mine, won't order the test. You are lucky that you have a doctor willing to do it. I know this illness is very tough for all of us, and life isn't always easy but I don't understand all of the anger just because I was trying to help people.

Name:

j

Email:

Date:

29 Oct 2002

Comment

k

Name:

Email:

Date:

29 Oct 2002

Comment

M1:I'm sorry that you have the gene yet the med that worked for me didn't work for you. I will see Dr. Ledger on Nov. 7 when I go to his colleague for an OB appt. I will certainly ask what the latest news is. I know they were working on other options, but they're also facing an uphill battle trying to get the funding and interest from the medical community. It's so depressing that the industry functions the way it does. I'm so thankful to have Dr. Ledger and Dr. Witkin working on behalf of vulvodynia patients, but at the same time I'm discouraged because if the pharmaceutical industry doesn't think it can make a buck, they hit a major set-back.Karen:There does indeed seem to be some anger and hesitation here. I just think we should all be patient with each other. If I could help just one person I'd feel great, and that's why I insist upon sounding like a broken record every once in awhile. I will NEVER forget the misery I used to live in, and that is what drives me to help people, or at least a single person. I certainly don't believe what helped me will help everyone... M1's report really bummed me out because I really thought if you had the gene the SUMA was the answer. Best of luck, ladies! I'll post back after Nov. 7. Hopefully Ledger will be in his office and I'll just pop in after my other appt.

Name:

Dana

Email:

To Reesa

Date:

30 Oct 2002

Comment

I too used to feel so irritated from discharge (not yeast or bacteria related). I finally found relief after 4 years of misery with Estrace topical estrogen cream. Since Spring I've been applying it every night to the inflamed vulvar areas, and I feel soooo much better. The discharge is still there, but it doesn't irritate my vulvar skin anymore. My skin is less red and painful and raw to the touch. Sex is not painful at all anymore! I hope you can find relief too!

Name:

Stacey

Email:

staceynglen@hfx.eastlink.ca

Date:

30 Oct 2002

Comment

Thank you for this wonderful website. I thought I was alone with a very rare condition, but after finding this website, I feel somewhat relieved. I'm still in the early stages of diagnosis and remain a little confused and skeptical. Hopefully this website and the wonderful women who participate in it will give me some knowledge and peace of mind.

Name:

M1

Email:

Date:

30 Oct 2002

Comment

Karen - did you get the oral swab test from Dr. Ledger?

Name:

karen

Email:

Date:

30 Oct 2002

Comment

M1-Yes, I got the swab from Dr. Ledger/Witkin's lab. They work together at Cornell University. They are the ones that discovered this gene is very common in women with vulvodynia. I got my results and I do not have the gene. I don't know if that's good or bad. I have mixed emotions about it.

Name:

Frank B.

Email:

Date:

30 Oct 2002

Comment

To Bec: My wife saw dr. horowitz about two years ago. "She has a recurrent tear at the six o'clock position. He asked many questions, examined her took a swab and even though she had no visible discharge said she had a massive yeast infection. He prescribed boric acid suppositories, the regimin varies and is messy. She did not see him for a follow up because he wanted her to take elivil an antidepressant. She did not want to take the medicine. He is " the expert" in ct but I just felt like he was rubber stamping everything. I keep hoping medicine will offer more than antidepressants and creams which do nothing to treat. Best of luck.

Name:

Annabelle

Email:

To Frank

Date:

31 Oct 2002

Comment

How did your wife respond to the boric acid suppositories? Back in June, I had a bad yeast infection, and I'd read about the boric acid treatment, so I made my own -- bought boric acid from a pest-control company and gelatin capsules from a health food store. What a mistake that was! I only got through 2-3 nights of inserting the capsules before I had to stop. My vulvar skin hasn't been the same since. It burned like hell and still has ridges and lesions. I hope your wife didn't have the same experience!

Name:

Frank B.

Email:

Date:

31 Oct 2002

Comment

To Annabelle: We had them made up on three different occassions by two different "Compounding Pharmacies". I asked if I could make them myself and was told either the pharmaceutical grade boric acid was different or something like that and I didn't want to take any chances on hurting my wife. Any way they never burned her just made a mess as they melted, the first time she used them she didn't even think she had a yeast infection. The whole idea is to make the vagina more acidic it is healthier in this state where yeast does not flourish. She has not had a visible yeast problem or urinary tract infection for quite a while. I think two or three things have helped. First of all she is drinking more water, secondly I brought her cranberry extract tablets which she takes daily and last we don't have sex as often. I think all of this has helped things calm down. She still gets that tear no matter how long we abstain, or lubricant we use. She is going for a biopsy of the tissue that tears this friday. They probably won't see anything but it's worth a look at. Best of luck.

Name:

S.

Email:

Date:

31 Oct 2002

Comment

I have a question for Susan. The work Dr. Ledger does indeed sound very promising--I want you to know I appreciatiate your contributions. I had never doubted your sincerity, nor have I ever thought you post your positive results with any intent to promote a "scam" of some sort. I only feel your situation is unlike mine, that's why I'm hesitant to be tested for the gene. I began to feel discomfort two and a half years ago only near the entryway to my vagina (following a strong course of Keflex for a minor bladder infection). There was distinct redness from the onset. Since then it has slowly spread to the entire vulva and now I'm red on the outer side of my vulva as well. I can still have sex but the skin is definitely irritated. Right now I'm in the midst of a bad "flare" so my husband and I are abstaining. I believe you mentioned in a previous post that your pain was deeper in your tissues and there was no noticable redness. Would that be the case?

Name:

laurel

Email:

Date:

31 Oct 2002

Comment

If there is anyone out there who thinks antibiotics or meds may have caused their v.v. ergo yeast related (or suffer from fibromyalgia or cfs), I have been in touch with Dr Mcnett in Chicago who actually performs a yeast test (stool test) and gives a candida questionnaire. He says that 70% test positive for yeast (even if it does not show up in a vaginal culture), and 90% never knew they had it. Also, he isolates your particulcar strain and sees marked improvement once long term antifungal treatment is given. He is all too familiar with vulvar pain and vaginitis, so I think it's worth getting in touch with them. The website is paragonclinic.com and he answered my mail personally. May be worth a shot. I strongly believe that many of us are victim to yeast. What's great is that they accept most Blue Cross Blue Shield insurance, and have a program to stay on a few days. I am making arrangements to fly there next month. If I can be helped, I think many can be, since I have had this for most of my life. Will post updates once I go. Good luck ladies, you are in my thoughts! Laurel

Name:

Annabelle

Email:

To Frank

Date:

31 Oct 2002

Comment

Thanks for the info. I also take cranberry pills everyday to ward off UTIs, didn't realize they help with keeping the vagina acidic too. I've read lots about keeping the pH low, so I bought some pH test strips and I run to my doctor if my pH gets about 4.5. So far, I've been accurate that this means an infection of some kind--if I'm below 4.5 I'm fine. I'm also trying to drink more H20 like your wife. I hope her biopsy on Friday goes OK. I'll say a prayer for her! Thanks for your always helpful & sensitive presence on this board. I appreciate you!

Name:

Bobbie

Email:

b.voris@attbi.com

Date:

31 Oct 2002

Comment

22 days ago I was prescribed gradually increasing doses of Neurontin. It is an anti siezure medicine that has been found to also help with chronic nerve pain. I have been pain free now for over a week. I did not have painful intercourse, "only" pelvic floor pain which was debilitating (this pain started 16 months ago.) I couldn't walk, so I couldn't go anywhere. It was so bad I would cry a lot & was very depressed. I couldn't stand to wear slacks, so have only worn skirts during this time. It started with a UTI. I believe we may all be suffering with a variety of problems, but hope that "my" variety has found its solution. I am so pain free I was able to spend 6 hours shopping (and walking!) yesterday in San Francisco.

Name:

Email:

Date:

31 Oct 2002

Comment

S:Thank you for your kind words. I really appreciate them. My pain was very weird as it seemed it would constantly change. The majority of the time it would burn down there very badly (like tabasco sauce). I recall that over a year and a half went by with that constant, horrible burning sensation. Nothing I did would help. Sometimes there was a "deep tissue" throbbing pain involved also...other times it just felt sore....like I had open wounds down there. It's very hard to describe. Most docs (I went to many) didn't see any redness at all. It wasn't until I found Dr. Robert Sasoon that he noticed redness. He's the physician that referred me to Ledger. I can't even remember exactly how long my journey was. I know that if a couple of years (once I was Ledger's patient) Ledger did interferon shots on me and those helped. After about 1 month since the start of the shots I felt a much better....but still not 100%. My constant burning was reduced. One thing that's so weird and seems different than the rest of the ladies here is that I never had pain with sex. My pain was so bad that I couldn't THINK of having sex, but once I actually broke down and tried it and it didn't feel any worse. Strange, huh? Of course, several days later I would burn even more...Hope that helps.Note to M1:I changed dr.'s appts. so I won't see Ledger 'til Nov. 14 instead of Nov. 7. Hang int here.

Name:

Marisa

Email:

magongora@hotmail.com

Date:

31 Oct 2002

Comment

I have good news! I went to my gyn and I didn't feel pain during the Qtip test! I was so excited. So was my doc. Anyway, we think it was the Noritriptyiline I have been on for a few months. I took 10 mg for 6 weeks but saw little change and noe it's been 6 weeks at 25 mg and I'm fine. Now I just have to try having sex to see if I'm really "cured." Luckily I'm now with an old boyfriend who is themost understanding man ever, so I will feel very relaxed which I think will help. My doc said my vulvodynia may have gone into remission and that I may have flareups but I think I can live with that. Of course, maybe my homeopathic medicines that I've been taking since July helped. There's no way to know but I'm going to stick to the noritriptyline.My doc did say that he presented my case to a leading doc somewhere back East who said my case was severe (b/c I hadn't responded to the past year of treatment.) This doc also showed him the newsletter that says that docs are now opting to put women on Neurontin, which was mentioned in an entry before. They mentioned starting at 100 mg 3 times a day, and then each week increasing it by 100 mg. They have women going up to 4000 mg and they're having results. Another one that's newer is Tamalox, another antiseizure, but they're still studying it to see what results they get.Sorry to go on for so long but I'm really happy but still want to pass on any info I find. I'll check in in a bit and post my progress, which I hope will be good. I'm hoping that I can finally have painfree sex after 8 years of pain.Hang in there everybody!

Name:

Email:

Date:

01 Nov 2002

Comment

I ordered 4 pairs of stretch chinos from Lands End. Three pair feels okay. Knits of course feel better, but I need to work in the other pants. Yesterday I wore one pair that does not fit as well as the others. At the end of the day, I was hurting so bad. I had to drive a lot that day which can bring on pain. I have cushions in my seat to help. I looked in the mirror and the vestibule area between my urethra and the entrance to vagina was purple (the area was sort of raised up, maybe swollen). I touched it. It did not hurt with my touch, but afterwards it had a funny feeling. Hard to describe the feeling. I also have burning on either side of this area and the 6 o'clock area at times. I ate soup with tomatoes that day, too. I think I am allergic to those. My question is what do you do when the vestibule area is irritated like that. I put protoptic on it last night and it was better this morning. Will I ever get over this? I need to wear regular pants and need to wear pantyhose sometimes. I am convinced this area is why I have a hard time driving and wearing regular pants. It is different from the burning I experience. I feel like I have had so many different problems with my vulva area. Please someone advise me of what I need to do. I have a doctor?s appointment next month. What tests should I ask her to run? What questions should I ask? I am ready for a cure!

Name:

Email:

Date:

01 Nov 2002

Comment

Does Neurontin have any side effects? Does it make you sleepy, or gain weight?

Name:

Bobbie

Email:

Date:

01 Nov 2002

Comment

Neurontin does make you sleepy & I have gained weight

Name:

Hannah

Email:

Date:

02 Nov 2002

Comment

Just thought I'd share somthing that has given me some relief from burning, itching etc. It is not a cure-all but does soothe and i feel improves the general condition of the vulval skin. It is paw-paw (papaya) ointment. The brand I buy is manufactured in Australia. It is all natural and safe and after trying a procession of chemicals that all made the area significantly worse, I was relieved to stumble across this ointment. I actually got onto it as my sister used it on her baby's nappy rash. I have been using it for about 2 years now and it keeps the worst of my symptoms at bay. Just an idea.......

Name:

anne elder scotland

Email:

anneelder123@hotmail.com

Date:

02 Nov 2002

Comment

Hi everyone,i have been reading the posts on the website for about a year now and have plucked up the courage to post.I live in Scotland and have found it very difficult to find the help i so desperatly need.I have been diagnosed as having vv but i am not so sure as i have severe burning 24/7 and also pain on contact.This first started three years ago after taking antibiotics then i got thrush and the symptoms remained.When it first started it felt like chronic cystitis ,my doctor then sent me to hospital where they said it was vv.Eventually it went away for about a year then returned as bad as ever again it went away after a few months then yet again it returned but this time so bad i wanted to die .This time i have pain when passing urine and pain on the left and right hand side of the vulva and it is constant.My GP here in Scotland says it is very rare and he has not seen anyone else with this,i think other women are just getting told it is thrush or are too embarresed to visit their doctor.The only thing i was offered was amitriptylyne and it has only taken the edge off the pain. For the past year i have been unable to work had no social life and have not been able to have sex so for the last year my life has been misreable.I cannot believe in this day and age with all the medical advances we cannot help the millions of women who suffer this terrible illness.If anyone in Scotland is reading this and wants to get in touch i would be delighted to hear from you also if anyone on the website can help me i would love to hear from you also.Sorry i have rambled on i waited a year to post so i have went crazy best wishes to you all love Anne.

Name:

Bobbie

Email:

Date:

02 Nov 2002

Comment

Anne, I have had most of the symptoms you are experiencing. I went to a physical therapist who specializes in women with pelvic floor pain. She was able to give me some relief after each visit. The pain would go away for a day or two. The pain was caused by muscle spasms in the perianal area. It burned when I urinated. Sometimes it felt like I was being stabbed in the vagina with a knife. I couldn't stand to wear slacks, or even underwear. What she did was teach me stretching exercises to stretch that muscle. She also massaged the perianal muscle with an ultrasound machine covered with a rubber glove that was highly lubricated. She also maually massaged the perianal muscle. This helped. My husband has since learned how to do this. As I said in an earlier posting, I have recently started Neurontin. The pain has nearly dissappeared. I did have a minor episode yesterday, but it stopped after a couple of hours. Maybe this info will help you.

Name:

Gwen

Email:

Moondancer57@aol.com

Date:

03 Nov 2002

Comment

I was told I have vulvodynia two years ago.. After numerous doctors and treatments to no avial..I was tested for LYME DISEASE.. I had LYME!!So please if a doctor tells you that you have vluvodynia get tested for Lyme it just might be that....

Name:

Jennifer

Email:

Date:

03 Nov 2002

Comment

New news. I thought this was interesting...my GP recently ordered a sed rate for me. In the past when I had vulvodynia my sed rate had been elevated (it is usually elevated in patients with autoimmune disease or infection--which to me is of course very interesting since I am obsessed with the fact that infection might be responsible for more autoimmune diseases than previously thought). Anyway, this recent sed rate was well within normal parameters! Interesting, since I no longer have daily vulva pain. Does anyone else out there know if their sed rates are up? If you have FM, arthritis, lupus, any of those they would have run this test, but it could be up due to those diseases. If you don't have those diseases and your sed rate is up, that could be another piece in your puzzle.

Name:

karen

Email:

Date:

03 Nov 2002

Comment

Gwen:I have always suspected I may have LYME disease, because of my fibromyalgia and vulvodynia, but have never been tested. Did you get treated for the LYME? Is your vulvodynia better?

Name:

Jan Johnson

Email:

j5_johnson@yahoo.com

Date:

03 Nov 2002

Comment

In reading over some of the comments I can't help but wonder if some of you don't have Interstitial cystitis.I have both IC and vulvadynia and they go hand in.Check it out. I've had a cystectomy and perinealplasty and am having urethectomy next month.If any of you have had a urethectomy-let me hear from you at j5_johnson@yahoo.comThanks!

Name:

Maria Eva

Email:

evadlin@mixmail.com

Date:

04 Nov 2002

Comment

Hi!I'm going to Dr. Poliakoff in Miami.I'm on Elavil 75 mg + Prozac 20 mg. I'm a little better.My doctor order spectracell analysis to rule out any vitamin, mineral,etc.Deficiencies.(spectracell.com).Has anyone seen dr. Poliakoff in the past?Has anyone ever had the spectracell exam?If anyone speaks spanish , please write me.I'm going to the doctor this week and i'll write after.Good Luck.

Name:

Beth

Email:

xxxxxxxxx

Date:

04 Nov 2002

Comment

You people just don`t seem to get it!You go on and on ad finitim about your pain and what you`re doing about it, bad mouthing drs. who cannot help you ,and still you ask the same questions over and over !And this forum has become a bragging session about who`s having more problems than the next! And MEN commenting and giving advice on women`s problems!!!!! Please! how kinky can you get!!!!There is no cure for Vulvodynia, so live with it. Adapt your livestyle around the pain, and get on with it!!!!!!

Name:

Lynn

Email:

Date:

04 Nov 2002

Comment

Hi all. I have not been on in about a year now. I havn't read the book because it's late and all, but I'd like to hear from Frank. Frank, your wife never seem to feel better no matter what she did. How is she doing? And Stephanie, are you still out there girl? How is your marriage? How are you feeling these days? And Laurel, are you still staying away from sweets? Are you still on that yeast free, sugar free diet? I want to hear from you all. Just in case you don't remember me, I'm the African American girl live here in AZ, I had surgery nearly 2years ago. Anyhow, it's getting late. I have to go to bed. I'd like to hear from you all, so send me a message. Also I have a question for everyone on site; Do any of you have pain over your body when you eat ANY type of food? Do you any of you have a Immune Deficiency( week Immune System). Well I believe I do. I'm going to try to see a Immunologist. I read about Immune deficiencies and that can cause other problems with your health. They can cause damange to the nerves. I'll keep in touch you guys. Goodnight!

Name:

Frank B.

Email:

Date:

04 Nov 2002

Comment

To Beth: Everything you mentioned is" Getting On With It!". What's the problem with complaining about dr.s who aren't helping you? It's a release to vent once in a while and this IS the place to do it. Exchanging information and thoughts can be beneficial both clinically and emotionally.I'm a guy and yes I've made some suggestions, does that make me or the women who asked perverted? What is sick or twisted in that? I never said I was a doctor, but I am concerned and I have gone through this with my wife, asking questions learning some things that are helpful. This if a very frustrating illness everyone here knows that but tests are performed and medications prescribed so there are many thoughts and questions to exchange regarding them. There is also the emotional and sexual aspect of this illness and how it affects the sufferer and her partner. Are we not allowed to discuss that either? Please lighten up a bit, no one here is doing any harm, just the opposite its true. What did you expect of this site? I'm not going away! I will continue to read stories, answer anything asked of me and lend a word of support and kindness when I can. Peace be with you.

Name:

M1

Email:

Date:

04 Nov 2002

Comment

Beth - since you, apparently are "getting on with it," what are you doing reading, as well at posting messages, at this site? Go on and "get on with it," girl! We are trying to help each other here!

Name:

Allen

Email:

none@please

Date:

04 Nov 2002

Comment

Can someone who has had a biopsy of vulvar tissue tell me how long it took to heal, how painful it was to have taken and as it healed? My wife is going to have one soon, and we wonder what to expect.

Name:

Email:

Date:

04 Nov 2002

Comment

The vulvar biopsies are very painful. i had 5 last year,it takes about 3 weeks before they start closing up.Healing time varies but mine took a long time to heal

Name:

Frank B.

Email:

Date:

04 Nov 2002

Comment

To Allen: My wife was going to have a biopsy done last friday but the doctor changed her mind. In my wifes case she gets a recurring tear at the six o'clock position like a paper cut. The cut heals then reappears when we have sex. Regarding the biopsy the doctor said she would feel nothing during the procedure because she would receive a pain killer. She also said very little tissue is taken so unless your wife has a problem with wound healing I would imagine a few days of discomfort and she would be fine. Many women with vulvodynia get patches of skin that are raw and inflammed so it is understandable that your wifes doctor would want to have the tissue checked. Best of luck to you both.

Name:

Email:

Date:

04 Nov 2002

Comment

I am thinking of taking an entirely different route. I am seriously considering going to see a psychic. I know this sounds radiculous, but I have tried every herb and every yeast medicine and antibiotic known to man. I am a Christian and have some reservations and know it's wrong to consult spiritual guidance. A girl at work went to one and said she was very very good. There are a lot of bads ones out there and it could open up the door on some bad things. I just think there is something going on here that may be beyond the medical community. Maybe some kind of spiritual battle.

Name:

Amanda

Email:

amanda@reciprocoaching.com

Date:

04 Nov 2002

Comment

Hi--I'm wondering if somebody (especially someone else in or near Seattle) might have some tips for me. I was recently diagnosed with vulvar vestibulitis--I've had more severe symptoms the past few months (intercourse went from somewhat uncomfortable to nearly impossible) but I believe that some of my problems date back to the birth of my son 5 years ago. I located an OB/GYN who seems knowledgeable and thorough, and is the first of several professionals to see anything wrong physically. She is advocating surgery because the most painful spots are a protruding piece of tissue and much of the hymenal ring, which is abnormally enlarged. She was willing to go over the range of treatment options with me, but because of my particular physical layout, thought they were unlikely to be helpful.I'd be interested in hearing from anyone who is in a similar situation or who knows about knowledgeable professionals in my area to consult for a second opinion.

Name:

M1

Email:

Date:

04 Nov 2002

Comment

Allen - Vulvar biopsies can be rough - but if a dermatological disorder is suspected they are necessary. I had two tiny biopsies taken in August, 2000, from the 5 and 8 o'clock areas. I thought they had healed in 3 weeks, but pulled them open during sex, which was extremely painful. They were completely healed and pain free in a total of 7 weeks from the date they were taken and have given me no problems since. I had another done in August 2001, it was much bigger, and taken from the center of the perianum (sp?) This was an extremely painful and long healing process, and 1 year later I still have a sensation like a little electric shock at the biopsy site. All it amounted to was extra pain that I certainly didn't need! I understand that the first ones I had were necessary, but I truly regret the 2nd. I just feel as though it didn't heal properly, even though it looks fine. Neither did me any good, all they showed was inflammation. If your wife is going to go through this she should ask that the doctor have a dermo-pathologist from the hospital take a thorough look at the tissue in addition to the standard tissue examination that a lab will do. She should really make it worth her trouble, you know? And if she has any say, skip the perianal area and take the tissue from either side. Vulvar biopsies are statisticaly not very helpful for people with VV. Be sure that a second opinion would not rule out the necessity of a biopsy. Just as a suggestion, a gyno-oncologist is very well suited to detect dermatological problems in vulvar tissue, possibly on examination without the biopsy - afterall - they are the ones looking at cancer - so, in my experience, they are well equiped to suss out any other tissue changes along the way . . . One more thing - just so you're prepared - they look NASTY! The biopsy sites will probably be coiterized, so they looked like little black pits. As it heals it turns white, then comes off (gross, but it's better to know what to expect). Once it has healed to a point where it's not such an "open wound", like in a few days or so, pierce a vitamin E capsule with a pin and put some of the oil on the biopsy - it should help it heal without too much scar tissue.

Name:

Amanda

Email:

amanda@reciprocoaching.com

Date:

04 Nov 2002

Comment

p.s. to my previous post: I searched the guestbook and found the recommendations for practitioners in Seattle--sorry I didn't do that first. Would still appreciate comments on or off guestbook if you have a similar situation.

Name:

Annabelle

Email:

re: psychic

Date:

04 Nov 2002

Comment

I am a Christian too, and I don't think there's anything wrong with you getting spiritual guidance from a psychic about your vulvodynia. I'd say go for it! What have you got to lose? We all have to come up with our own way of dealing with this disease. Don't let anyone/anything tell you not to pursue every possible option. God is not going to punish you, and the devil is not going to attack you. I know it's tempting to think this disease is a manifestation of some larger cosmic problem, but I think it's inherently physical. That's just my opinion. Please let us know if you get any answers! Good luck!

Name:

Sandy

Email:

Date:

04 Nov 2002

Comment

I HOPE THIS HELPS SOMEONE!Hi, I'm 40 years-old and was diagnosed with vulvodynia three years ago. Approximately nine months after being diagnosed my doctor recommended that I try a "saddle block" to numb the area. He suggested that I have them every thirty days to deal with the pain. I tried it one time. It was great while it lasted, but like clockwork the swelling and pain was back a month later. I couldn't see myself doing this every month and with the support of my husband I was determined to figure my problem out. I'm hoping this may help someone else too.This is what I learned. Lack of estrogen started my whole situation off. It started a vicous cycle that I wasn't aware of while I was going through it. The lack of estrogen caused my serotonin levels to fall. This in turn caused me to crave sugar (candy, simple sugars, etc), which in turn kept my estrogen levels low. Since I had low estrogen levels, I lost the "natural" mucus barrier that protects the vulvar area. I found out that oxalate foods, such as tea, coffee, chocolate, nuts and dark green leafy vegetables were causing the inflammation I was experiencing. When an "oxalate " food gets processed through the kidneys the cells that that get expelled through the urine are "spear" shape rather than spherical in shape. If there is no barrier of mucus (produced by estrogen) the cells that are spear-like in shape stick into the skin causing irriation, pain and swelling.In addtion another symptom presented itself. A yeast infection. I have concluded this is the result of the low levels of estrogen and the fact I was taking in too many sugars which disreputed the "natural" flora by making the area too acidic.In addition I found information about a study that was conducted on women with vulvodynia. They were given the "the first generation of antidepressant" which decreased the levels of serotonin. I felt there was a direct correlation between information above and information I read on amino acids (which raises serotonin levels). One such amino acid is triptophan (found in turkey which I ate in moderation). I found this to be a direct link with the tightness and pain I felt at the opening of the vagina.I started myself on a program. First I stopped eating sugar. Then everytime I urinated I applied vitamin "E" to the whole vulvalar area. This was to stop irratation from any "oxalate" foods I ate which I used until my estrogen levels started to rise. Next I exercised to get my levels of estrogen back up (which I perferred rather than taking a supplement). I stopped eating turkey for a couple of months until my body was back on track. I cleared-up the yeast infection with a acidophophilua douche which I made with live cultures (the kind that must be refrigerated). Now I eat sugar in moderation only! And the vulvdynia is gone.I hope this helps someone. It changed my life!!!!GOOD LUCK!

Name:

Lee Ann Denne

Email:

license45@yahoo.com

Date:

04 Nov 2002

Comment

Im really thankful that theres someone out there that caresive been dealing with this problem alone in the dark for yearsif theres anything i can do to help vioce the fact that were out here and we need helpim willing to do what it takes

Name:

Dana

Email:

Date:

05 Nov 2002

Comment

Thanks, Sandy. That was very helpful!

Name:

Donna

Email:

Date:

05 Nov 2002

Comment

Sandy,I really enjoyed your post. I have had similiar results. I am 42 years old. I feel that my whole problem started with a decrease in hormones at around the age of 38, and the amount of sugar I ate. I ate a lot of foods with sugar when I was sad, frustrated, etc. I was diagnosed with lichen planus 3 years ago, and I believe it was definately due to my sugar intake. I think it damaged my immune system. Since I have stopped the sugar, started walking two miles 5 times a week, and used a probiotic both orally, and vaginally, I have at this time which is now 6 months total improvement. My sex life is back to normal, and I feel great. I also take a multi vitamin, evening primrose oil for my skin, and a womens supplement to balance my hormones. I used too much steroid cream, and monistat, cleocin, etc. prescribed by my doctor, and still kept on eating the sugar. Please look into this connection ladies.

Name:

Karen

Email:

karenjs@interlog.com

Date:

05 Nov 2002

Comment

Sandy and Donna,I was VERY interested in your posts. What you've said makes a lot of sense. My vulvodynia started during a time of extreme stress, which can also affect estrogen levels. Can you please describe exactly what your symptoms were? Was it just vestibulitis, with no visible skin changes? I have a very visible rash, so I'm wondering if what you've said applies to me.

Name:

Karen

Email:

Date:

05 Nov 2002

Comment

Sandy - one more question...How did you know your estrogen levels were low? Did you just suspect it, or did you actually have blood tests done? Lots of women suspect low estrogen is the cause of their problem, but their blood tests are within the normal range.

Name:

cindy

Email:

cgaras@wiley.com

Date:

05 Nov 2002

Comment

i have been diagnosed with vulvodynia for about 2+ years now. i suffered for a year seeing different gynecologist and none of them finding anything wrong and all tests coming back negative. I also saw 2 dermatologists. One prescribing strong topical steroids and the other telling me i had excema. What a joke.In the past two years I have come a long way and have alot of pain free days. Initially my pain was disabling. I could barely put on pants or walk. I also had stabbing pains internally in the vaginal area. I was severly depressed about my condition. After months of useless doctors and no help I came upon Dr. Rodke's office located in NY. I went there and had a visit and guess what they found? YEAST! I had non-albicans yeast which 5 other gynecologist could not see! I began treating with different creams / pills (nystatin, compound prescriptions etc. . . ). I no longer have non-albicans yeast and I feel great! I can actually go to the gym now! I still have some days were I feel slightly uncomfortable and I do sometimes get yeast infections BUT they are just candida albians infections. They reason I am writing this is b/c after reading several of the guestbooks I think alot of you may have yeast infections that your doctor is not finding. All my labwork and cultures came back negative when they were sent to the labs. The doctor I was seeing noticed it in her office. I can't explain why the other doctors didnt see it. I recommend all of you check again to make sure you don't have a yeast infection. As good as your gynecologist may be, he's only human. If any are able to travel to the NY area I really recommend Dr. Rodke's office. They are wonderful and I am almost back to living a normal. life. Good luck to all of you out there!

Name:

Jennifer

Email:

Date:

05 Nov 2002

Comment

ALLEN, I had two biopsies a few years apart, and neither time was terrible. Of course, the numbing meds they give you sting as they go in, and then afterwards I was in some pain, but took tylenol for that. It was not pleasant, but was by no means horrible. Why are they doing a biopsy. I personally think that if the tissue is going to be just sent of to a commercial lab like Smithkline or Labcorp it might not be worth doing.

Name:

Emily

Email:

eroyce@smith.edu

Date:

05 Nov 2002

Comment

Sandy and Donna: How did you stop eating sugar entirely? Is it just refined sugar or all forms? I'm currently trying to follow the low-oxylate diet but all the different versions confuse me and I honestly don't know which to trust. This is also difficult because I live in a dorm and we don't get to choose what to eat. Many times this means I don't eat at all. Exercise increases estrogen? I exercise ALL the time, but I also took purely progestrone or mild-estrogen birth control for about 3 years. Will my body recuperate on its own or do I need to cut out sugar and exercise more? I have been using estrace for about a week now, but does that just help the vulvar tissue while skipping the importance of having your body produce enough estrogen?

Name:

Annabelle

Email:

To Emily

Date:

05 Nov 2002

Comment

To answer your question about estrace...a very minimal amt. of the cream is absorbed through your skin if you're only applying a thin layer to the vulvar tissue. There have been tests to see if it makes its way into the bloodstream, and the only people who experience this are women who are inserting a lot of the cream vaginally for hormonal replacement therapy. vvs sufferers like us don't apply enough to get full absorption.

Name:

Frank B.

Email:

Date:

05 Nov 2002

Comment

To Katen: You asked Sandy about estrogen level. I don't know if you have read any of the posts i wrote regarding that but a while back I convinced my wife to see an endocrinologist. I said upon examination including questions that if a woman has normal menstrual cycles it is and indications of normal estrogen. He took blood for testing and swabbed some of the lining of my wife's vagina. He said he wanted to make sure the estrogen level in the cells was normal. Results came back and he said everything checked normal and that he did not the benefit of supplementing her with hormones. Her current gyno was going to do a biopsy of the area that tears but changed her mind she was afraid it would not heal. I mentioned to her what would cause the skin to tear? Does it loose it's elasticity..could it be a collagen problem or is whatever thinning the skin just breaking it down? I still am frustrated that some researcher hasn't tested this thinning skin and gotten some answers. Back to the issue of hormones they might be relevent for a number of vulvodynia sufferers but without the proper testing they will continue to suffer. Best fo luck. I also mentioned to the endocrinologist the theory of optimum hormone level. That refers to levels that fall into the normal range but on a scale where the person functions well. Such as my testosterone levels may be normal but low on the so called normal scale so I would benefit from supplementation. Same thing with estrogen.

Name:

Sandy

Email:

Date:

05 Nov 2002

Comment

Karen and Emily, I think the best advice I could give you is to read a book that I found so incredibly helpful. It's called What Your Doctor May Not Tell You About Premenopause, by Dr. John Lee. That gave me the basics in understanding my hormones. Next I spoke to a Nutritionalist who explained the effects of oxalate foods on the system. That's when I found out I could still eat them, I just had to protect the skin in that area from being "essentially" stabbed by the spear-like cells in the urine. There is a lot of information out there that will also explain the effects of sugar on womens hormones. As-far-as getting my hormones being tested; yes, I did get my hormones tested and the doctor told me they were "within" normal range. My gut feeling and the signs that I was getting from my body told me different. I was just recently told by a different doctor who read those same blood tests from three years ago, that I was indeed premenopausal. So trust your gut and only YOU know your body. I've educated myself about my body. And if there is a "symptom" that presents itself I know I have an imbalance in my body and I figure what I need to do to get things back on track. I hope that helps.

Name:

Sandy

Email:

Date:

05 Nov 2002

Comment

One more thought. I know that in my search for finding resolution to my vulvodynia problem, I would come-up with theories and I tried to prove it by testing it out. Case in point when I was told that my estrogen level was within normal range, I decided to prove that "normal" standard was not always the norm for all of us. For example I had read that the lack of estrogen was responsible for the thinning of the vaginal walls and decrease of mucus as we age (that's why KY jelly is on the market). I questioned "If my hormone levels were normal why was I having trouble sleeping and I never did before?'. So I tried progestrone creme and it worked. I questioned "Why do women crave sweets before their period?". And again I found my answer, because low levels of estrogen which sets in motion the lowering of serotonin which makes some women crave sweets. I began to realize things and paid attention. So then I questioned, "If the estrogen is normal the mucus barriers should be there, let's test it and find out". That's when I started using vitamin e capsule after urinating. The swelling went down, the irration went away. I've learned estrogen is amazing. There is so much we haven't learned about it. But I do know by paying attention to your body you can learn a lot. The biggest lesson I've learned is "Don't just treat the symptom, LOOK FOR THE CAUSE! I really hope that helps too!!

Name:

Donna

Email:

Date:

05 Nov 2002

Comment

In response to the questions about sugar, I have to say that I still do eat fruit, and fruit juices, but I stay away from the refined sugars. I feel so much better, but I feel that the probiotic has played a major role both vaginally, and I take it everyday orally. I used it vaginally for one month., I was a sickly child, and also as a teenager I used tetracycline for a year for acne. I also used cleocin in the last three years , plus steroid cream for the lichen planus. All this steroid and antibiotics messed up my system. The antibiotics kill off all bacteria in your body, both good and bad, so then things like yeast can grow out of control. I have also learned that refined sugar depresses the immune system. I have done a lot of research on my condition. I used to mention to my doctor that maybe I was eating too much sugar, and was it playing a role, and he always ignored that theory, but from my reading yeast overgrowth can manifest itself in a lot of ways. I had slightly reddened areas, but my chief symptom was burning, and pain with intercourse. it wasn't extremely painful, but it was always burning. If i wiped, the skin burned and was sore. I had white blood cells show up in the vaginal smear. At one point the doctor cultured it, and said the they found a bakers yeast. it was strange, and the lab wanted to know how I got that. I firmly believe that it was the consumption of sugar in my diet, because I also had digestive upset. I was treated with nystatin, and it still burned. Then I was given steroid cream and cleocin for the lichen planus. That is when I figured my body was trying to tell me something. So, I stopped the refined sugar, and started the vitamins, probiotics, drinking a lot of water, and walking. I steadily improved and I am just about back to normal now. Occasionally with my period I will have a little burning, but I have read that it is common, and probably due to a PH difference in the vagina due to the period. it goes away in a few days, and I am fine. I hope this helps someone. I always felt that steroid cream is depressing the immune system, but it isn't finding out why the problem is there. I realized that I had to find the solution myself, because my doctor only wanted to talk steroid cream, etc. I still go to him for my yearly checkups, but I don't think much of his philosophy, and when I go back I am going to tell him what helped me the most, and it wasn't all the drugs he wanted to give me!!

Name:

Donna

Email:

Date:

05 Nov 2002

Comment

I forgot to mention that you should check the type of sainitary products that you use. I also believe that the Always pads played a role for me. My doctor even said they are highly allergenic. I only use natracare natural pads now, and they breathe and are better. i still have some skin irritation until my period is over, but that is due to the chaffing of the pads, and in a few days it is gone.

Name:

Donna

Email:

Date:

05 Nov 2002

Comment

One more thing, I never had my hormones tested, my doctor said that it wasn't that, but I know myself. I was missing periods, some were 45 days , some were 16 days. I had less lubrication, and I would wake up at night and couldn't sleep. I knew my body was changing. I figure I am probably in the perimenopause stage. The evening primrose oil has helped with the lubrication, as has the women's formula. I hope this helps someone, I know how desparate I felt each day with opening your eyes and feeling the burning begin. It occupied my every thought and day. I will think positive, and hope you all get rid of the discomfort.I hope mine never comes back, but I just enjoy every day I have without pain. The holidays will be a challenge with the treats , and I have 2 kids who love the sweets, but I have to stay strong.

Name:

Lee Ann

Email:

leeanndenne@yahoo.com

Date:

05 Nov 2002

Comment

I thought that i had systemic yeast for a long timeso i went to a holistic doctor who put me on a no sugar dietno refined, no cane,no fruit, no juice, no carbsit lasted about 3 monthsi was very strong willed and determined to get betterit was very bad for mei got very sick i lost to much wait throw up everything i would consumei couldnt eat for 10 days and was rushed to the hospital for an ivi recommend not trying this dietwe need a little bit of sugar for energy and balancesomething that works really well for yeast infections is agresept d by this company called essentially yourswhen ever my symptoms came on i would put a little bit in my water and it seemed to make me feel much betterim ready to get to the root of my problem and stop treating yeast symptoms or im afraid it will never go away

Name:

Sandy

Email:

Date:

05 Nov 2002

Comment

Donna have you ever heard of N.A.E T.? It could be a way of helping you with strengthening your immune system.

Name:

Frank B.

Email:

Date:

06 Nov 2002

Comment

I have read up on n.a.e.t. and I'm wondering if it is as fradulent as "Applied Kinesiology". I know a chiropractor and he told me they all use this technique to make money. He said really now do you think for a second that just holding a bottle of a supplement near a person will affect their strength? I think if someone is allergic to something there is usually more to the allergic reaction than their mind and it will take more than reprogramming the mind to overcome the allergy. This sounds like fradulent and posibly dangerous stuff. Please be wary ladies there are plenty of folks who would love to profit from your suffering!

Name:

Donna

Email:

Date:

06 Nov 2002

Comment

Sandy- No I don't know what NAET is . I have used something called Moducare, that is supposed to balance your immune system by slowing it down if you have an autoimmune disease, and rev it up if it is underactive. There are no side effects, and it is plant based. I took three ca[psules a day, but I am only taking one now, i want to see if it will still work. You can read about it on www.healthyimmunity.com

Name:

Trudy

Email:

Date:

06 Nov 2002

Comment

hi, im 20 and have had vulvodynia since i was 15, is there anyone else out there who's had it since they were a teenager? Also im now being treated with low dose Amitriptyline has anyone had sucess with this?

Name:

Donna

Email:

Date:

06 Nov 2002

Comment

To: S A N D YI am very interested in what you said about the vitamin Ecapsules. Please elaborate on how you protect your skinfrom the oxalates in urine. Please be specific.I am suffering from this problem too and would lke someadvice. Thank you.

Name:

Erin

Email:

Date:

06 Nov 2002

Comment

Trudy: I was diagnosed finally at 19, all my problems started at 18. It is a horrible time to be going through something like this, but stay strong and keep trying all of the methods out there until you find something that works for you. I did try Elavil up to 125 mgs, but it really didn't do anything for me. My problem is related to constant bacterial/yeast infections and low-estrogen levels which I believe came from the BC pill. The only suggestion I can make to you is to look back to the moment all of this starting happening to you and try to identify anything, anything that may have contributed. I am now 23 yrs old and finally, I believe, on the right path. Stay strong and most of all do not keep this in the dark, be vocal.

Name:

Sandy

Email:

Date:

06 Nov 2002

Comment

TO: Donna. This is what makes an oxalate food different from other foods. My Nutrionalist explained that when foods are processed through the body and then pass through the kidneys the bi-product is a spherical cell in the urine. When an oxalate food is processed through the body and then passes through the kidneys the cells are not spherical but more of a diamond shape. He explained it actually can be seen under a microscope. So when you urinate and you don't have the protection of your "normal mucus membrane" the diamond shaped cells then stick into the skin. I decided to use vitamin E as a protection to stop those cells from sticking into the skin and causing irratation. I did it for three weeks and each day saw an improvement. Let me know if that helps!

Name:

Sandy

Email:

Date:

06 Nov 2002

Comment

TO: Donna. P.S. I did a lot of investigation about N.A.E.T.'s and have been very successful in that treatment for my auto immune diease. I can't praise it enough!

Name:

Karen

Email:

Date:

06 Nov 2002

Comment

Anyone with a visible rash? I have had severe burning sensations that have now subsided quite a bit, but I'm still left with a red, sandpaper-like rash over the vulva and anal areas. My gynecologist and dermatologist claim everything looks normal but I know the skin is inflamed and it never used to be. Has anyone had this, and been successfully treated?

Name:

Donna

Email:

Date:

06 Nov 2002

Comment

To: S A N DYThanks for posting a reply. I will follow what you suggest,but one last question, do you rinse your skin and pat dry before applying the Vitamin E oil from a capsule?Thanks.

Name:

Sandy

Email:

Date:

06 Nov 2002

Comment

Karen try the vitamin E capsules. You must do it for a few weeks to see the healing process. The skin has been irritated for such a long time it takes a few weeks to heal. Next get your estrogen levels up. Remember stress plays a big role in depleteing estrogen. So excercise and don't eat a lot of sugar. I'm going to look for the name of a book that helps greatly to explain the connection between diet and estorgen.

Name:

Sandy

Email:

Date:

06 Nov 2002

Comment

TO: Donna. I started vitamin E for the first time right after I took a shower. I never rinsed the skin in between showers. After urination I would pat dry with toilet paper not "wipe". I thought this was less harsh on the area.

Name:

LYNN

Email:

Date:

06 Nov 2002

Comment

Has anyone of you thought about the foods you eat are causing allergic reactions in the vulva? I burn when I drink sodas or eat any greasy foods. If I stay away from yeast causing foods, I won't burn.

Name:

Lynn

Email:

Date:

06 Nov 2002

Comment

Has anyone thought that food allergies such as soda, breads, or any other yeast containing foods can be the cause of the pain? I'm going to see an Allergist/Immunologist specialist. I'm just waiting for my Dr. to get me a referrel.

Name:

Sandy

Email:

I'm really trying to Help!

Date:

06 Nov 2002

Comment

Again those foods that you are talking about all lower estrogen. With low estrogen you don't have the proper mucus protection in the vulvurlar area. In addition the foods you are talking about make your body more acidic. So no protection plus no mucus protection equals irratation, pain and swelling. I have cured myself going on 3 years now.

Name:

Sandy

Email:

Date:

06 Nov 2002

Comment

Opps. Let me restate that. No protection (that you had at one time made from estrogen, specifically estriadiol) and eating more acidic foods equals, pain, swelling and irratation.

Name:

Lee Ann

Email:

leeanndenne@yahoo.com

Date:

06 Nov 2002

Comment

Trudy,Im 22, and my symptoms started at 15.Two weeks ago I was diagnosedIt took me seven yearsIm just starting my jorney to recoveryI think the best thing is to stay positive Im so relieved there are other people that are going through the same pain i amim really looking for someone to talk to for supportand things that seem to make them feel better

Name:

Emily

Email:

eroyce@smith.edu

Date:

07 Nov 2002

Comment

Trudy: Reading the description for vulvodynia was a slap in the face. "Wait, everyone else's vaginas don't burn all the time?" I guess that my symptoms showed up when I was about 8. Maybe that's why I was such a serious child. I'm 19 now and it gets worse everyday.Sandy: So wait, what if I am wet the MAJORITY of the time (reason why I can't just ditch underwear eventhough my symptoms are so much better when I do)? How is my irritation explained then? Is the no-sugar diet in combination with the low-oxylate diet? Could lack of estrogen be involved in my depression since the first causes a drop in serotonin which then causes depression? I've been taking anti-depressants (a lot) for the last 5 years. Shouldn't my serotonin levels be high enough? And as far as paying attention to my body and noticing when something is "off"- my body is always off, it doesn't even know what to do with "on." I've had my period for 6 years and it's still not regular (largely my doing.) How do I know what is a "normal" smell or "normal" discharge? What if everything has always been off with me and my neglect (I was only 8 after all) has caused a yeast infection (for example) to escalate to what I currently experience on a moment to moment basis? I research and evaluate and keep a journal yadda yadda yadda, but where the hell do I start if I don't even know what normal is?

Name:

Frank B.

Email:

Date:

07 Nov 2002

Comment

To Emily: Your post was a very strong argument for the necessity of this site and open discussions regarding vulvodynia and women's health in general. The longer these issues remain a forbidden subject the harder it will be for mature exchange of information and meaningful research. The fact that I as a man cannot openly exchange here without some women thinking poorly of me demonstrates how backward we still are. Women should know what normal odor and discharge is all about at different time in their lives. Ignoring your health is what leads to serious health problems. My wife is so secretive regarding her vulvodynia symptoms. I don't expect her to openly talk about this to strangers but with her close friends and family an exchange might be beneficial. I swear reading and posting here does not give me any erotic or sensual feelings. I'm here to learn, to exchange, to spark interest that may someday help my wife or possibly my daughters. They talk about viagra and men's problems on T.V. all the time but there is no mention of women's problems like vulvodynia. Breast and uterine cancer is the only thing I here about regarding women's personal health. When will the words vulva, vagina and clitoris be acceptable as part of our spoken vocabulary?

Name:

Karen

Email:

Date:

07 Nov 2002

Comment

Emily,If you want to educate yourself, read everything you can get your hands on. There are lots of good books - just look in the Women's Health section of any big bookstore, or search on Amazon.com. There are books about vulvodynia, about hormones, and tons of others topics, but you might be best to start with one about women's health in general. Wishing you best of luck.

Name:

Paulette

Email:

Date:

07 Nov 2002

Comment

Hi to everyone who contributes to this site. This is the first time that I have posted here even though I've been reading the postings for over a year. My vulvodynia came on gradually over the past two years. I just turned 50 and have always led an extremely healthy lifestyle. We eat mostly organic foods, I drink lots of water, I don't eat very many sweets as I don't have a taste for such, I've been a runner for 34 years, and also lift weights. I have no chronic disease problems and I've been married to the same guy for 24 years. My point in mentioning this is that I've done more than most people do to take care of themselves and I still have this vulvodynia. So, ANYBODY can get this misery. I have had yeast infections in the past but I used a diaphram for birth control and I feel sure this contributed to the yeast infections. I also feel certain that fluctuating hormone levels caused my vulvodynia which manifests itself through agonal itching and irritation. I had an extremely stressful time last year which surely exacerbated the condition. Like Karen, I had a rash that got so bad one doctor thought it was genital herpies. I had a swab test and a blood test which was negative. I took Estrace and Prometrium for two months along with the Estrace cream which was irritating. I got some relief but my breasts hurt so badly that I could hardly move with the pain. The gyn I was seeing took me off that regimen and put me on Vagifem tablets and Estrace cream. That didn't help and in the meantime I was getting worse. I am also on Celexa for the depression brought on by this mess. I don't know if that helps now because I can have such bad days that I sob all day long then fall asleep due to exhaustion. I've found a gyn who actually knows something about vulvodynia. Like most here, I've visited numerous doctors for this problem even though I used to be the kind of person who rarely went to any doctor. I'm back on the Estrace and Prometrium but cycling the Prometrium, I'm doing the low-oxalate diet to some extent, and using Protopic twice daily. I feel much better in regard to the itching but intercourse feels like rubbing an open wound even though the vulvar tissue looks better than it did. And on occassion, out of the blue, an irritation can start that makes walking a real effort and subsequently gives me an attack of acute anxiety. I apologize for such a verbose posting but I thought I needed to share my history and what I'm currently trying. I appreciate all the info I've found on this site because it has given me knowledge and hope.

Name:

Sandy

Email:

Date:

07 Nov 2002

Comment

To Trudy: This is the theory of what I think caused my vulvodynia maybe this could help you. The first thing that happened to me was: Before I got vulvodynia I was under a lot of stress. I became very depressed. I would eat sugary items. I would also like to note that I'm very thin. And estrogen is stored in fat. I think the depression, loss of weight and eating some sugary things lowered my estrogen (which by the way all these factors become a vicious cycle which makes you more depressed). I started with signs of vulvodynia. I started to more conscience of eating right. But that didn't seem to help. One thing I ate maybe once or twice a week was turkey (which contains tryphen). Not too long after I started with the muscle at the vaginal opening feeling extremely tight and painful. Next the vulvular area became extremely inflamed, enlarged and painful. I think that the depression and anxiety and loss of weight started the process off. My theory is when my estrogen was low and I was eating some sweets it lowered my estrogen even lower. The sweets were raising my serotonin levels. The turkey containing tryphen (an amino acid) was raising my serotonin levels. I think the problem for me was the ratio of estrogen to serotonin. I think you need estrogen to level off serotonin. I think a good indication of this is when women experience PMS right before their periods (estrogen is low and they eat sweets to raise the serotonin, but you still are irratitable). I learned through my readings and investagation that serotonin EFFECTS THE TISSUE IN THE VULVULAR AREA!!! When I learned that light bulbs went off. That's when I started doing things differently to get back on track. It took eight months all together to get rid of it. But I knew I was heading in the right direction. I look at my body as a big chemistry set. This situation was a domino effect. One thing effected another and so on. But I was determined to get better like all of you. And you will. I hope this gives someone a light bulb moment too. I want to tell you, YOU CAN DO. Trust yourselves! The very best luck to all of you. I truly know what your going through! Here's one more thought for all of you that think yeast is the culprit. I don't know for anyone else but it seems in my life the yeast infections I did have started around my period when my estrogen was it's lowest. So I think the estrogen even helps keep yeast in check!

Name:

Email:

Date:

07 Nov 2002

Comment

I too believe the culprit is yeast. Whether it is low estrogen or antibiotic use. What has worked for me is to apply ice twice a day (ice wrapped in a washclothe) until the ice melts usually about 1/2 hour. I found that I get over heated in that area very easily. The constant burning is creating alot of heat and intercourse creates friction which causes heat. Yeast loves heat. The ice has to be left on long enough to create a temperature change ( not less than 20 minutes). Then I insert monistat every night at bedtime after the ice application. I have done this for one week now I am 100% better. The ice slows down the growth of yeast and the medicine along with my immune system kills it. I will do this for the rest of my life if I have to. I think the heat in that area is keeping the yeast happy. So the idea is to keep it cool all of the time.

Name:

Sandy

Email:

Date:

07 Nov 2002

Comment

I DON't think it's yeast. I think you've missed the point!

Name:

Sandy

Email:

Date:

07 Nov 2002

Comment

Your treating a symptom and not getting down to the cause. Obviously you can choose to live with it I coundn't I had to find the cause and not just get relief from time to time.

Name:

Karen

Email:

Date:

07 Nov 2002

Comment

Paulette,I agree with you that a diaphragm might have contributed to the problem. Looking back, I recall a number of things going on at the time my vulvodynia started, and all of them have a bad effect on the natural balance of the vagina.... I was using a diagragm with spermicide (which kills the lactobacillus "good" bacteria). I took Zithromax for a sinus infection (antibiotics also kill good bacteria. I was under extreme stress at the time (stress alters the vaginal flora plus lowers estrogen). I was using bubble bath frequently (big mistake). Then I started taking the pill, which probably made things worse. I got a bad yeast infection, and have never really recovered. After I stopped taking the pill, I felt a bit better, but after all those factors together, the damage was done. I really believe my natural state was altered so much that I might never get it back in balance. It's just a theory, but .....

Name:

Karen

Email:

Date:

07 Nov 2002

Comment

Paulette -- One more thing you might try...I started taking Suma (Brazilian Ginseng) about a week and a half ago. I'd read on this site that it has helped a few women. It's supposed to have anti-inflammatory properties. No one is more sceptical than me about these alternative therapies and supplements, but out of desperation, I tried it. Within a couple days I felt quite a lot better. I was starting to get the shooting, stabbing pains that some women have described and that really terrified me. When I started on the Suma, those pains stopped. I know it could be just a coincidence. The only way to know for sure would be to stop taking it, but I'm afraid to stop. I don't want to go back to the level of pain that I had before. I know Suma doesn't work for everyone, but it's worth a try. If you do decide to try it, please post here and let us know how you're doing.

Name:

Emily

Email:

eroyce@smith.edu

Date:

07 Nov 2002

Comment

To the poster who was pleased with the results of an ice pack: I have read on this site and other accredited sites that while an ice pack might bring the temporary relief that all of us need, it is detrimental to the situation in the long run. I have also read the opposite, which causes me to be sceptical of everything. I would look into it further. Everything I have read says that what the area is lacking is blood flow and heat brings blood flow, but a heat pack is not recommended because that dries out the area. A blow drier was recommended and even a lamp directed towards the vulvar area (obviously with no pants on.) While this doesn't seem like an effective treatment since many of us burn all the time and don't want to add to that. I guess in the long run it's supposed to be better. Just what I've heard, but ultimately treatment is an individual choice, and with us there is so little information on the topic that sometimes it can be hit or miss.

Name:

Maria Eva

Email:

evadlin@mixmail.com

Date:

08 Nov 2002

Comment

My english is bad but PLEASE you must to read this.He gave me spectracell test results(see spectracell.com).This is a blood exam (to expensive:$520).With this test you can know if your body has the essential micronutrients.Health conditions can be affected by micronutrients(vitamins,minerals,antioxidants,etc).So:i have deficienies in vitamins b2,b12,selenium,and more....Maybe that the cause of my spasms and vulvodynia.The laboratory send me(i don't know this verb in pass tense) what and how can i take the exact dosis of micronutrients.I think : the test is very important,and you might try it becouse a lot of deficiencies in the body cause simptoms like us.I'm learning inglish now ,so:if you have cuestion i don't have any problem to write yoy if you have cuestions about this new test.Good luck.Eva.

Name:

Cassidy

Email:

Date:

08 Nov 2002

Comment

To Sandy: I am very interested in your posting. I am just a little confused and hope you can clarify something. You posted that serotonin affects vulvar tissue. Is is better to have higher levels or lower levels of Serotonin? I am assuming that too high levels affect the tissue. If so, how can I lower them without medication? I read that serotonin is found in many body tissues. Do you know how it affects the tissue? Sorry for all the questions, but I think you may really be on to something?

Name:

Email:

Date:

08 Nov 2002

Comment

To: Maria Eva. Thank you so much that is a huge part of the puzzle. I think you are totally onto something!

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

To: Cassidy. The levels of serotonin were high. A study was conducted with women suffering from vulvadynia. They were put on the "first generation" of anit-depressants. This type of anti-depressant brought down the serotonin levels. I found I could lower my serotonin by: Number one stop eating turkey. It contains tryptophen which is an amino acid, it's high in vitamin b. That raises your serotonin levels. When I stopped eating turkey it took about three weeks before the swelling started to subside. At one point I even felt like my body was going through withdrawl. I also stopped taking my multi vitamin and fish oil capsules. At the same time I worked at getting my estrogen levels up. Again I'll state that when I got the estrogen back on track which took awhile everything returned to normal. I can now eat normally. I now take my vitamins. I now can eat turkey without a problem. P.S. When I saw the posting of Maria Eva it totally made sense to me too. I think it fits into what I'm telling you!!! If you ever need specifics on what and how I did things let me know. I'll be glad to share it with you. Good luck!

Name:

Karen

Email:

Date:

08 Nov 2002

Comment

SANDY -- You haven't described the symptoms you had (unless I missed it in earlier posts). Could you do that please, in detail? I'm very interested in your theories, but I'd like to know if our symptoms were the same. Thanks!

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

To: Karen. Here are the symptoms I remember there may have been more, but it's been awhile. The swelling was so bad that I couldn't wear pants. Burning, yeast infection, pain around the opening of the vaginal (stabbing pains). Tightness at the opening of the vagina. It felt raw, I never examined myself for rashes I remember feeling so upset I couldn't look! There may have been more, but that's what sticks out in my mind the most.

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

To Cassidy: I'm sorry I didn't answer your question about the serotonin and what effects it has on the tissue of the vulvular area. I found out it makes it swell.

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

Here are some things you may ask ask yourself that could be part of "your" puzzle. Does any of this apply to you? Are you thin? Or are you premenapausal or menopausal? Or have you tried and lost weight recently or maybe around the time you experienced symptoms and your were successful at lossing that weight. Were you depressed, or stressed? Or are you taking vitamins or were taking vitamins? Or is your body an acidic body? This may help with giving you clues.

Name:

Donna

Email:

Date:

08 Nov 2002

Comment

TO: S A N D YJust curious, was the swelling you were experiencing on both sides or just your left side??? I am on the thin sideas well, during the past year I lost over 34 lbs, becauseI was so miserable and in so much pain, I didn't eat verymuch, hence the weight loss.Finally, did you take any estrogen supplements, pleaselet me know. Thank you, Sandy, I think you are on to something important.

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

One more question you may think about too. Are you on anti-depressants? And if so, does your anti-depressant increase or decrease serotonin? To: Donna. No I didn't take estrogen supplements. I choose to balance my hormones with the proper diet. That even took a lot of doing. I had to research that too! Did you say before in one of your postings that you were depressed or stressed at first?

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

To: Donna. I'm sorry I didn't answer your question about swelling. It was on both sides. Personally, even if it was on one side I'd still think serotonin was out of check.

Name:

Donna

Email:

Date:

08 Nov 2002

Comment

TO S A N D Y:To answer your question, I was extremely stressed outdue to a family crisis. That is how it all started. I believeage, in combination with stress and or depression, mix in less estrogen, is a component in this awfulcondition or syndrome.I will research the seratonin levels to determine if this can help me too. I already have decided to eliminate turkey for a few weeks to see if it helps.Thanks, Donna

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

To Donna: Just remember to also use the vitamin e capsules. Don't take vitamins for now. I'm going to get the name of a book I used for my diet to help with estrogen. I did learn that estrogen is best obtained by proteins and vegetables. Remember all these things work in conjunction to each other. You have to give it chance! Good luck! And let me know!

Name:

Sandy

Email:

Date:

08 Nov 2002

Comment

I should really read my posting back before I submit! I meant to say use the vitamin e in the vaginal area until you get your estrogen up. I stayed away from my multi-vitamins and sugars as I went through the healing process. Hope this makes it a little clearer.

Name:

Kate

Email:

krichar1@tampabay.rr.com

Date:

09 Nov 2002

Comment

I was someone who suffered many years with Vulvar Vestibulitis (VVS) and Interstitial Cystitis (IC). I had finally tired of going from Dr. to Dr. to be told there was really no cure - except maybe surgery to remove the area - and that rarely works. I had simply learned to suffer from this problem. However, events in my life over the past year had started up a bout of severe anxiety and panic attacks. My son was dealing with the emotional crisis of his father committing suicide, and was quickly tuning out the world and going downhill. I did not have time for me to be sick, or not be able to cope with stress. 10 years ago I had tried Hypnotherapy to help me relax during a stressful time in my life. I decided to go back for a "refresher" as I had stupidly stopped practicing SR once I had gotten through the acute stress at the time. As I had moved since the last session, I went to the web to find a local hypnotherapist. While searching, I ran into a web site article on someone that tried hypnotherapy for Vulvar Vestibulitis and was thrilled with the response. I asked my new hypnotherapist about this, and she found that there are Protocols for these conditions. Through a course of interviews with me, she determined many of the potential reasons in my past that may have been leading to the stress/tension that was causing this to occur (this up-front interviewing is key). Because I would get nervous over the POTENTIAL vaginal and urinary pain that may happen because it had really happened in the past, particularly during intercourse, I stayed tense all the time. (In other words - I was maintaining a permanent level of tension in my muscles that had to be leading to the alot of the inflammation). She also learned that because I don't tend to feel thirsty at any time, I was not drinking enough water which may also be leading to the IC. Once she was comfortable with my particular history, she tailored the Protocols to me. In short during the hypnosis, she got past the concience mind to plant the suggestions that have helped me relax the muscles throughout my body, and particularly in the pelvic area. Additionally, she planted a suggestion that has me drinking water daily. I won't go into the details, as there are web sites that can do much better than me at explaining the benefits of hypnotherapy... the best being www.asch.net - which is the American Society of Clinical Hypnosis, which can guide you into finding a practicing Clinical Hypnotherapist in your area. I will stress from what I have learned after hours of searching - there are two types of hypnotherapists... Clinical and Lay... make sure you are finding the Clinical Hypnotherapist, and then make sure their credentials good (there is an article on hypnotherapy and how to find the right therapist at the www.asch.net site that guided me to finding the right person). What you are going to learn through a really good hypnotherapist is that relaxing is key to getting healthy. You are bracing (staying tensed up) and that is most likely leading to inflammation in the Vuvlar area (as well as other areas of your body). While the hypnotherapy will help get around the concience "I can't do it mindset" to plant the suggestions in the protocol, you will most definitely be given self-hypnosis/SR instructions tapes to go home and practice - at least twice-a-day. These sessions are usually tailored to your specific protocol needs, and are often tapes of the session with your therapist. You will most likely go to the therapist 2-4 times, depending on how you respond. I did not believe in hypnotherapy the first time I went (like many I associated it with the magicians on-stage making people walk around clucking like chickens). However, that is not what real hypnotherapy is about. (see http://www.asch.net/genpubinfo.htm For me- I am still practicing my SR with the aid of my tapes. I have no panic attacks, no VVR or IC syptoms, and I drink lots of water each day, and I feel better than I have in years. Good luck!

Name:

Sandy

Email:

Date:

09 Nov 2002

Comment

If you started with vulvodynia at a young age here are some questions that may give you clues. Think back, did you take a multi-vitamin? Did you eat a lot of chocolate at one sitting? Did you ever take vitamin b-complex and have a reaction that was similar to sunburn?

Name:

susanne

Email:

Date:

09 Nov 2002

Comment

http://www.egolo.de

Name:

Donna

Email:

Date:

09 Nov 2002

Comment

Sandy,Did you add soy into your diet to raise your estrogen levels? I take a lot of vitamins, but my symptoms really Improved. I would hate to stop them, because then the fatigue and other problems start. I notice that stres and not getting enough sleep can trigger mild burning in myself.

Name:

Sandy

Email:

Date:

09 Nov 2002

Comment

I noticed that when I took any soy products or soy isoflavens "my" estrogen levels went down. I read that soy acts as a receptor. I felt that soy (acting as a receptor) was actually expelling any estrogen (which was very minimal) from my body. That's my experience with it. As-far-as the vitamins obviously I don't want to tell you what to do. I experimented. Maybe just stopping the turkey alone you'll feel a noticable difference in a few weeks. Maybe this will trigger other thoughts as to what maybe affecting your body. My theory is there is somehow a connection to women who develop this syndrome and the ratio of estrogen and serotonin levels. I look at what raises serotonin without the protection of the estrogen. I'm finding clues all the time. Somehow the estrogen keeps things in check. You may see clues in yourself as well. I'm just trying to point things out that may give you clues and help with your healing. I wanted to start out with a clean slate and that's why "I" stopped taking everything. Go by your gut and be in tune with your body. Really pay attention to results and that will spur you onto to figuring it out. Here's some thoughts that I'm thinking you could mull over about the fact your experiencing mild burning with lack of sleep. Again I found that lack of sleep caused my estrogen levels to become depleted (you already know stress depletes it), therefore your mucus barrier is depleted. So that's what I'm thinking!

Name:

Sandy

Email:

Date:

09 Nov 2002

Comment

To: Donna. One more thought. Remember, remember always apply the vitamin e. I can't stress that enough! It's protecting that skin while you get things back into balance!

Name:

Sandy

Email:

Date:

10 Nov 2002

Comment

Here is something else that was a big part of my recovery. I made the conscience decision that I was going to get better. I was certain of it. That started my mood to change from depression to hope. In turn that helped with balancing my hormones. I exercised which helped in so many ways. It helped keep the depression away. My attitude was now of someone who was taking control rather than giving in or feeling hopeless. I felt I was actively doing something to make myself feel back in charge, that in turn gave me a feeling of power. Again it was also helping to balance my hormones. I think this syndrome has a combination of factors that chemically happens to your body. I think from my experience that it takes a combination of things to get better. One more thing getting back to the vitamins. Earlier on I was asked about serotonin and what I did to get it lower. It is still part of my theory that vitamins, when we have this particular condition or syndrome is effected tremendously by vitamins, specifially vitamin "b's". Again turkey has a lot of vitamin b. I feel that vitamins are a contributing factor in raising serotonin levels because of the vitamin "b's". When I was going through the healing stage I wanted to take out all of the contributing factors that would raise my serotonin. That's just my thoughts.

Name:

Laura

Email:

Date:

10 Nov 2002

Comment

I have been suffering with Vulvar Dysesthesia and Interstitial Cystitis from almost ten years. My IC symptons have been under control with Elmiron for more than 7 years. My vulvar pain which is a burning sensation with no visible signs is accompanied by very bad lower back pain near the tailbone and also rectal pain. It seems as though Dr. Glazer's biofeedback treatment is a very logical approach. Has anyone had success with his approach. His research suggests a 50% cure rate. I have not been able to find any recent postings in the guestbook discussing the success from his treatment.

Name:

Janice Prince

Email:

jprince@harborside.com

Date:

11 Nov 2002

Comment

For 2 years now, I have been suffering from a really horrid burning sensation in my clitoris which affects that part, as well as internally, frequently being experienced as an intense electric-type jolt. My naturopath discovered by calling OHSU in Portland, Oregon that this is most likely clitoraldynia, a subpart of vulvardynia. It comes and goes and when it is at its worst, I am totally beside myself, all but screaming. It feels like sheer torture. I am wondering if very many other women have experienced this and if they have found any relief. I am going to a local gynecologist who has at least heard of the ailment, though he has not treated anyone with it (until me). He has thus far tried a couple of different ointments which have done nothing to relieve the problem. In reading through some of these guestbooks, I found a reference to amitriptiline, which apparently is some kind of antidepressent. That did not work either. I have also been having digestive problems for quite some time, as well as having a somewhat weakened immune system. Various kinds of foods also irritate this condition, to the point that I am eating mostly raw vegetables, which don't seem to bother it. I am wondering if other women have had similar experiences. The problem started right about the time I quit having periods. I never had any problems of this sort before then. Thanks for any help anyone can offer. If you would like, you may reply to my e-mail address.

Name:

Lynn

Email:

Date:

11 Nov 2002

Comment

My nightmare has been going on for over a year now. It started I belive with a bad yeast in fection that I had a hard time getting rid of. I've been checked for everything except Herpes which I'm sure I don't have. All tests came back neg. but I still got bad yeast all the time. I finally convinced my doctor to check for hormoness which for six months I repeatedly asked her if that could be it. I'm 43 and sure enough It came back as menopause. I believe this is all caused as a lack of estrogen. I only missed a few periods so I didn't think it could be that. I have burning on my right labia and up to my clitoris and in my pubis hair. For the longest time I couldn't wear tight pants. She put me on hrt and for a month it all went away but then It came back. I'm switched to a patch to see if it helps out more. I feel like I need more estrogen. I'm am so thankful for Sandys post, what a great attitude! You give me hope, thank you. I also use estrace cream morning and night and that seems to help but I've only been on it for a few weeks and I know that takes time. I have lost 15lbs. and I've ben under stree which contributes to this all. When your crotch burns it hard not to be stressed. I tried elivil but made me feel like a zombie and am thinking of trying serafem, I'll keep in touch. Sandy please keep posting as you are an angel!!

Name:

Lynn

Email:

Date:

11 Nov 2002

Comment

I forgot to say I did got to a specialist in Ann Harbor Mi. and they said they didn't think it was hormones and thay don't know what causes it. She's booked till April with women that have this. She said that she sees girls as young as 8 to 80 year old women. Shes the one that put me on elivil which made me feel like a zombie and then Paxil which gave me horrible diareha. I still feel its my hormones because this all started when I wen into menopause, I mean all women have hormones no matter what age. Sandy, should I stop the vitamin b's? I just started them a month ago and I don't seem to notice any difference.

Name:

Karen

Email:

Date:

11 Nov 2002

Comment

I wanted to contribute my thoughts on vitamin B... Someone suggested we stop taking it in case it was contributing to the pain. You could try not taking it if you think it's a problem, but if you don't notice any difference, I suggest you start taking it again. It's possible that some people might be sensitive to the coloring that is sometimes in the coating of the vitamin pill. If that's the case, then stopping it might help. However, the B vitamins are very important to help your body cope with stress, and they sometimes help a lot with PMS symptoms too. I'm an irritable mess the week before my period if I DON'T take my B complex every day, so there's no way I'm going to stop taking it.

Name:

Emily

Email:

eroyce@smith.edu

Date:

11 Nov 2002

Comment

Sandy: Do flinestones vitamins count as a supplement during young age? I definitely ate a hell of a lot of chocolate when I was young...and ever since. I believe the antidepressant I have been on for about 5 years now raises my serotonin levels. Without it I can't get out of bed. I think my levels are low naturally and that the antidepressants bring it to a normal level. I would like to experiment, but I'm incapacitated when I'm off it and I'm in college right now, which is hard enough as is when I'm "stable."

Name:

Dee

Email:

Date:

11 Nov 2002

Comment

Usually I read the website every day, but I was away and had to "catch up" on about a week and a half worth of reading. I wanted to make comments to several of you. To the woman who had an entry on 11/4 regarding going to a phsycic, beleive it or not I've thought considered the same thing. I was hoping that if the person was for real that maybe they could lead me in the direction I need to go or if I should consider surgery. As crazy as this sounds after trying so many things you can be willing to try anything. To Sandy, Do you apply the Vitamin E AFTER you urinate or before? I'm confused. Maybe I missed something having so much reading to catch up on I read rather quickly. To Cindy from 11/5. Dr. Rodke is my doctor also. She has only found yeast once and after treating it I have had no change. I'm glad she was able to help you. We're still in the trial stages for me. I just saw her a week ago. I've been seeing her for almost a year. I hope we get to the bottom of this soon. I believe she is probably one of the best versed doctors in Vulvodynia that I have seen and I've seen about a dozen. Even though we haven't found the answer yet I would like to stick with her for a while. It so much nicer to be able to keep going to the same doctor and not retell your story to someone new every other month. So I hope that one day I can say she helped me like she was able to help you. Congradulations! To Laur from 11/10- When I saw Dr. Rodke for the first time, Dr. Glazer shared her office once a week to evaluate Vulvodynia sufferers. Now they work separately, each out of their own office. Dr. Glazer found that my pelvic floor muscles were very tense from fighting the pain of the vulvodynia. The exercises are tightening your pelvic floor muscle for 10 seconds and then relaxing for 10 seconds. You do this twice a day for 20 minutes each time. Try doing ONE TYPE of any exercise for 20 minutes. It's grueling. I did it for a while, you actually get sorer in the beging from doing something new, then that soreness should go away. I was good at doing it once a day, but twice was difficult. By the end of the day I am so tired from everything else and fighting the pain I don't find it hard to talk myself out of it. Dr. Glazer insists that you do it twice a day continuously or you will not see results. Dr. Rodke also strongly believes in this protocol. She was angry with me that I haven't done it like I should and does not want to consider if surgery is necesssary until I give this a whole hearted shot. So I'm going to do everything she says so that if it doesn't work we can say I gave it a good shot. She said it could take 3 months before I could notice anything. I think it is a good theory but I believe that I need something additional to help me relax my muscle. I have read of people who it has helped rather quickly. I would say to anyone that they should give it a shot. I just feel in my situation that I have skin damage that was caused by intercourse that irritated me after not having intercourse for a long time. I think I damaged the mucous membrane and have scar tissue. Did anyone ever hear of "use it or loose it"? In my case I didn't "use it" very much during my life and I think I "lost it" after trying to get it back. My skin was like baby skin, and was too weak to handle it. At least this is what I feel happened to me. The swelling I now have I believe is my body trying to fight the pain and the tension of the pelvic floor muscle is causing restriction to the vaginal area. I guess I've sai enough for one entry. Sorry this was so long.

Name:

Sandy

Email:

Date:

11 Nov 2002

Comment

I wanted to start off by stating something that I want to be clear on. I am not a doctor, nor do I want to tell you what to do. In my previous postings I have gotten excited about sharing what I've done and how it worked for me. I did tell Donna to stop her vitamins which was wrong of me. I did, however; correct that in the posting that followed. I can only tell you what worked for me. I can give you information but YOU need to research it. I'm glad Karen questioned not stopping her vitamins. It's great to question things. I would if I were her. Again all I can do is tell you what worked for me and what information I found out and my thoughts on it. I can tell you why I choose to do a certain thing and how I started to make connections. I can tell what I agree on or disagree on. But I'm hoping that someone out there is making connections like I did. Maybe they're having a light bulb moment too. A good friend of mine once told me I was obsessive. At the time I took that as an insult. Now I look at as a compliment. That's what got me through this horrible affliction, it got me better. The best thing I can say is, I looked for things that made sense. I love being a detective and figuring things out. I educated myself, just like you. But I don't want to step on anyones' toes. I also want to correct what Karen stated that I said. I didn't state that I thought vitamin b might be causing the pain. I stated that I read that vitamin b increases serotonin levels. I stated that I found a study on how serotonin effects the tissue in the vulvular area (causing it to swell). As-far-as food coloring in the vitamins, I don't think for myself that this was a factor. I only used a low allergenicity dietary supplement (no artificial colors).

Name:

Jen

Email:

Date:

11 Nov 2002

Comment

I just have a couple of questions. My doctor finally prescribed estrace cream and lidocane for me. I think that I have all the symptoms of IC too, and I was wondering if either of these medications irritate the IC? I have an appointment with the urologist this Friday and am sooo sure i will finally be diagnosed with it. Does elmiron take away that sharp razor blade feeling i get in my urethra? Oh.... what I would do for a urethra transplant : ) Its bad enough with the vulvar pain, but i have definitly been suffering with the bladder pain for alot longer. I just want to feel normal again.

Name:

Sandy

Email:

Date:

11 Nov 2002

Comment

Here is something that was BIG for me that I completely forgot about. When I wanted to get my estrogen levels back up I went to the local Health Food Store and asked for suggestions. They gave a product that had the herb Black Cohosh. I'm sure some of you heard of it. I was told that it helped with increasing estrogen. So today I found information in the book The Healing Power Of Herbs by Michael T. Murray, N.D. that I thought WAS AMAZING. So I had to share it with you. I will quote what it says on page 376: Black cohosh was widely used by the American Indians and later by American colonist for the relief of menstrual cramps and menopause. Recent scientific investigation has upheld the use of black cohosh in both dysmenorrhea and menopause. Clinical studies show tht extracts of black cohosh relieve not only hot flashes, but also depression and VAGINAL ATROPHY. In addition to exerting vascular effects, black cohosh reduces LUTEINIZING HORMONE (LH) levels, thus implying a significant estrogenic effect. I thought that was big, big and I wanted to share.

Name:

Sandy

Email:

Date:

11 Nov 2002

Comment

Sorry this is the last posting, I promise! I was told it takes about 8 weeks to see the effects of the Black Cohosh. It was about 8 weeks before I noticed the difference.

Name:

Lynn

Email:

Date:

11 Nov 2002

Comment

Sandy, What kind of vitamin e do you use? Do you use the gel caps and squeeze out the oil and apply to your skin? How often do you use it? Can you use Black cocosh and hrt at the same time? Thanks for all of your info. Did you try the estrace cream topically on the outside at all?

Name:

Sandy

Email:

Date:

11 Nov 2002

Comment

Lynn, I bought the cheapest vitamin E "softgel". I just used a pin to pierce it. Yes I applied to the vulvular skin everytime I urinated I would reapply it. It would be best to talk to a Doctor of Natural Medicine to find the information on taking black cohosh with HRT. I don't have know. No I never used estrace. I remember I was trying to find a compound pharmacist to make 2 percent estrogen creme, but I never persued finding the doctor to write the script. Good luck. Let me know how you make out!

Name:

Emily

Email:

eroyce@smith.edu

Date:

11 Nov 2002

Comment

I'm only 19, but I've been getting hot flashes since at least age 15. My old acupunturist was the first to ask me and wasn't surprised by the response. I don't know what that means. From what you say Sandy, it sounds like black cohosh could be good for my hot flashes, depression, and vulvodynia.

Name:

Kristin

Email:

krissy42042@aol.com

Date:

11 Nov 2002

Comment

i am just writing because there is hope out there....i have been on nortriptyline since july (70mg), have been using estrace nightly, and doing Dr. Glazers biofeedback for about 4 months. I am happy to say that i am like 95% better and am able to have great sex....sometimes it hurts a little at first, but it gets better and always feels more good than bad...anyways....don't give up hope

Name:

Donna

Email:

Date:

12 Nov 2002

Comment

I just wanted to say that I have been taking a women's formula that comtains Black Cohosh. It seems to have helped me. I notice that I also am not as doom and gloom as I used to be. I have been taking it since May 2002. It also contains Dong Quai, and chaste tree berries, plus red clover. I have felt better, and the evening primrose oil taken orally sems to really help the vaginal lubrication. I had really noticed a decline until I started taking that.I am 42 years old.Lynn- I have had similiar experiences with itching on the vulvar skin, and soreness of the pubic hair. I never had that until the last few years. This summer I had a terrible time with a fungal infection in the groin area.I exercised all summer, and it was horribly hot, plus in the spring I had used potent steroid cream on my condition prescribed by my doctor. I believe that it set me up for the infecton. I was around the hair follicles. I have exercised all my life and never had these problems. I think the reduction in estrogen sets the vulvar skin up for this. I have noticed that my periods are shorter, sometimes only 24 days, sometimes 45 days, and I have skipped one every so often. It struck me when you said that you had burning of the pubic hair, because I can relate.Does anyone have an idea how to prevent the tendency for fungal infections? I use a powder of tea tree oil, and grape seed extract, but I sweat a lot. It has been bothering me a little bit at this time.

Name:

Donna

Email:

Date:

12 Nov 2002

Comment

I also want to say that I think when women are in their early 40's the doctors don't want to say it could be your hormones. I have also repeatedly said that to my doctor, and he always says no. I have never had mine checked, but like someone else said, just because it is in the normal range, if your own level drops to say low normal, couldn't that affect your body and cause symptoms. I would think it could.

Name:

Lynn

Email:

Date:

12 Nov 2002

Comment

Donna, My periods too were very erractic and I would miss a few. I had to insist to my doctor to check my hormone level and I was right! I know my body and never was sick with anything and I knew something wasn't right. I would get yours checked just to see if they are low. Has the burning in your pubic hair gone yet? I have to say since I've been on hrt its 50% gone. I used to have to come home and immediately put on some sweat pants. I have excercised all my life until this last year because I was so sore and afraid but I just started going back to the gym. I remember my doc. had me on a steriod cream also and it didn't help. I would never use tha steriod cream again. From what I read it thins out the skin and we certainly don't need that! I use acidofilous , one in the morning and at night at my yeast seems to be under control. Thanks so much for sharing this with me. I have been reading these posts for a year but felt so depressed because all I ever read was there is no cure. I'm taking Sandys attitude and I'm going to beat it. This is the first time I've posted and it feels so much better to talk about it and hear that others have the same symptoms. For the longest time I thoght I had cancer and just freaked out about this horrible thing. Now I'm feeling alot better, Thank you all for sharing!!

Name:

Lynn

Email:

Date:

12 Nov 2002

Comment

I also wanted to add, I never had pain during sex. I enjoy my sex life and I would rather have pain everyday after than during. I feel so bad for the women that have pain during... I have you all in my prayers and never give up because I believe there is a cure. Also if the burn was driving me nuts and I needed a day off I would use Vagisil ointment on me all over into my hair and that would numb me and feel great. I just don't want to depend on that the rest of my life. It just took my mind off it for a day .

Name:

Karen

Email:

Date:

12 Nov 2002

Comment

Just wanted to add my support for the whole hormone theory. I also suspect that low estrogen might be my problem. I just turned 40 and my periods are still fairly regular, but MUCH lighter and shorter in duration than they used to be. I also have been having some symptoms of pre-menopause, including trouble sleeping, depression and irritability, heart palpitations, dry eyes and hair, night sweats, and now this vulvar irritation and pain. I don't know why doctors are so reluctant to consider hormones as a possible cause, in particular low estrogen, or just a DROP in estrogen compared to previous levels. If low estrogen isn't the problem, then why are so many women helped by the Estrace cream? There must be a connection. We need to trust our instincts, do our own research, and get tough with our doctors. This is a wonderful forum for sharing information.

Name:

Laura

Email:

Date:

12 Nov 2002

Comment

Dee: Thanks for your response regarding Dr. Glazer's protocol. I believe that the pelvic floor has alot to do with my problem because I have pain in the whole pelvic region (back, rectum) in addition to the vulvodynia. I hope that it works for you if you can stick with the regimen. I'm going to give it a shot. Thanks again.

Name:

Email:

Date:

12 Nov 2002

Comment

Karen:There is no doubt that hormones play a role in this for some people, but certainly not all. Some have yeast problems, some nerve damage, some have "the gene," ... you get the picture.I used estrace many years ago and I went through the roof. Most vulvodynia patients are allergic to propylene glycol, which is an ingredient in Estrace. That's the scarey part. It MAY be hormonal for some, but they'll shrug it off and say the estrace didn't work. It may have worked wonders if it didn't have propylene glycol in it! Anyway, back in the days of my problem I had every hormone test in the world, and it wasn't that for me... Glad that you've found relief and hoping your experience will help someone else!

Name:

Sandy

Email:

Date:

12 Nov 2002

Comment

Lynn, you go girl. I'm cheering for you. Don't you feel impowered simply by changing your mind on how you're going to deal with this. Donna, just wanted to share something with you. Remember when you asked if I took soy in my diet and I told you I didn't because I felt it would cling onto my estrogen receptors and actually lower my estrogen? I looked up dong quai on page 46 of the same herb book I spoke of earlier and it said this: Phytoestrogens demonstrate and alterative effect by competing with estrogen for binding sites on cells. When estrogen levels are low, phytoestrogens exert SOME estrogenic activity; when estrogen levels are high, phytoestrogens reduce overall estrogenic activity by occupying ESTROGEN RECEPTOR SITES. Just food for thought. I know I keep bringing up this next point, but can anyone else remember when they got an yeast infection, before I mean (before you started with this condition). I know this wouldn't apply to you Emily. Before you suspected your estrogen was low. I think for myself it's been always around my period, when my estrogen was at its lowest. That makes me think that the estrogen keeps my flora in balance. Not to say that yeast isn't a problem. I know the book The Yeast Connection and I do believe to have yeast lurking in the body is a bad thing. It's just with my experience with this syndrome "I" felt that estrogen kept my flora in check. What does everyone else feel. Does this make sense? By the way if anyone wants me to write down exactly the steps I took to get better I certainly will. Let me know!

Name:

Donna

Email:

Date:

12 Nov 2002

Comment

Lynn,I still have the soreness, in fact it seems worse tonight, and I have not done anything differently. When the pubic hair is moved I get soreness, or a prickly feeling. It is wierd, and I know what you mean about the pants, i am constantly pulling at them. maybe it is from the walking I did yeasterday, I usually try to shower immediately, but i didn't have time . Oh well, I will get rid of it eventually. When I had the fungal infection I had to use a chloritrimazole and steroid cream to get rid of it. i wish I had never used the steroid cream from my doctor, i have been having all these wired problems ever since. The vaginal area is pretty good, now there is always something to bother me. I appreciate you getting back to me, it is nice to talk to other women in their 40's that are experiencing some of the same things.Ever since my last period, it seems I have so much irritation, I figured it was just from the pads. I will have to check on the Dong Quai Sandy, thanks for the info. I too have tried to just keep going in my life and beat this thing. I am just about there I think, i even went bike riding last month a couple of times with my husband. It was so good, I am going to do it again even if I have discomfort. I am tired of not doing things beacause of this problem. I was always a big bike rider, but the last three years have been difficult, so I started walking. Lynn- I take a probiotic too for the good bacteria, and it has helped. I even did a candida cleanse. It is great sharing ideas, I look forward to checking the guestbook every day.

Name:

Sandy

Email:

Date:

12 Nov 2002

Comment

Donna, you triggered my memory again. I too remember that I would have iration after some periods. I started on the acidoplulus (the refrigerated kind) again not only orally but I also used it as a suppository in the morning and at night. I always felt yeast created a more acidic environment. I remember the burning in the area of the pubic area. Actually, I remember that was happening during the healing process, but I don't know why!

Name:

Lynn

Email:

Date:

12 Nov 2002

Comment

Sandy, I would love to hear all that you did to get your cure. Any info. is so helpful. I never had yeast until I went and had my annual done and was told I had it, then I got rid of it . But that was a year ago and before that I never had one for a least ten years. They came on all of a sudden. I kept taking monistat and it would go away but then return the next month. I look back and thats when my periods were all messed up and I believe I was in men. and didn't know it. When your vagina has no estrogen it dets dry and sets it up for yeast. I had them off and on for a year straight. I believe all the meds. burned me and damaged my skin. Thats why I use the estrace to try to heal my damaged skin. Donna, I can't believe I now know someone whose has a "burning bush" as I call it. My doctor looked at me as if I were crazy because it never looked irritated. My always gets worse later in the evening too! Now today It was normal an it was so nice! I take the estrace and rub it all around in my hair and plan on doing that for a long time because it seems to be working. I so thankful to hear from you. Don't wear always pads, I read they are horrible for your skin! I'm going to start rubbing vit. E on too and see if that works, Thanks again!

Name:

Donna

Email:

Date:

13 Nov 2002

Comment

Thanks ladies for the info. I agree about the always pads. I used them for years and that is also when my problem started. My gynocologist even said that they were highly allergenic, why do they put this stuff on the market. I also used something called Gynatren which is a probiotic suppository, made by natren which sells Healthy Trinity, the oral form that is refrigerated. I used the suppository for one month. I listen to duke and the doctor, she is a holistic doctor with a radio show. I actually called into the show, and she said that some doctors feel that the skin condition that I had called lichen planus was caused by yeast. So I used the suppository, and what an improvement. By then though I had already used the steroid cream which set me up for this fungal stuff. my doctor always said there was no cure for the lichen planus, and what did it matter what caused it. That irritates me, he never could say what caused it, and didn't care. I correspond with a doctor in Holland who deals in women's issues, and she looked it up for me, and said that it is often caused by low hormone output, estrogen. That makes sense to me now because it only started botthering me from age 39- now, 3 years. It actually started for me with burning in my bladder, then moved to the vaginal area. I don't have the bladder problems now. This doctor said she was in th U.S and was appalled to see all the junk on the shelves that women are using on their private parts. She is a real proponent of douching with water, I have never done that, but she says that they sent info to the U.S. about that and they were looked down upon. I don't know, but our doctors could be better.Sandy- maybe I am in the healing phase now, I know I am 80% improved for sure, I will always keep fighting. Most of my succesful treatment has come from my own research and not from my doctor who only wants to fill me up with antibiotics and steroids. Why doesn't our medical establishment see the sense of probiotics, and how that could play a role. Have a good day ladies!!! What do you use for pads, or tampons? I use Natracare right now.

Name:

Donna

Email:

Date:

13 Nov 2002

Comment

One more thing, The wierdest thing about this pubic hair thing is that as long as my clothes aren't rubbing against the hair it is fine. If I press in on it there is a needle , or prickly sensation, soreness. Very wierd. I haven't had too much of it recently, it was more burning of the vaginal area. Since April, the vaginal area has been much better, almost total improvement. I am so glad that I have found others with this problem who are also experiencing low estrogen. I confirms my suspicions even more. I don't suffer with the pubic hair thing all the time, only occasionally. I actually was symptom free from Sept-present, it seems to be since this last period. I guess something is really off hormonally this month. I also think that sleep plays a role for me. I rareley get more than 6 -7 hours of sleep a night during the week. The reason is that my husband gets up at 5 am, which wakes me, then my son gets up for high school at 6 am, so I don't fall back to sleep after my husband leaves. My son and daughter both teenagers, try to stay up until 10, and I have to stay up to make sure they go to bed. Needless to say by Friday, I am exhausted, and some nights we are up until 11-12 , if my son has a project. I also suffer a little with insomnia, early morning waking, so I know that lack of sleep can affect both hormones and the immune system. I don't see it changing much for the next 5 years.

Name:

Sandy

Email:

Date:

13 Nov 2002

Comment

First I think the "Always Pads" are another big piece of the puzzle. I used them all the time. Donna here's just a thought that I noticed with me. When my estrogen was low I would have insomnia and wake around 3 a.m. and had a very difficult time going back to sleep. The best thing I still use to this day is natural progestrone creme. It works great for me. You can learn more about it from the book, What Your Doctor Does Not Tell You About Premenapause by Dr John Lee. I consider it the bible of women. It was one of the best books I've read on womens hormones and problems. Lynn, this is what I did. I'll give you the whys along with it, but investigate it for yourself before you try things. First I took "live" cultures of acidopholus (in the health food refrigerated section). I would take one with each meal through the day (3x's a day). I also would insert one capsule in the vagina at nite and in the morning. I thought the burning sensation was caused by yeast (due to the lack of estrogen). The capsules would dissolve and the discharge was soothing. This proved to me that yeast was causing an acidic condition. I used vitamin E softgels and applied after every urination. I felt this was a way of protecting my skin from the diamond shape cells caused by ingesting oxalate foods. I took Black Cohosh (as explained in the prior posting). I stopped eating turkey for a couple of months. I felt my body could not handle how vitamin b was inflating my serotonin levels. The swelling in the vulvular tissue "I felt" along with the swelling and the tightness of the muscle at the opening of the vagina (as-well-as the tightness of the vaginal canal) was from a lack of estrogen and the serotonin was not kept in line because of the lack of estrogen. So I wanted to lower my serotonin until I got my estrogen up, so "I' stopped turkey as-well-as my multi-vitamin and fish oil capsules. I stayed away from refined sugars (that was lowering my estrogen). I ate proteins and vegetables to get my estrogen levels up through foods. I was very thin so I also needed to gain a few pounds. I knew estrogen is stored in fat in the body. I excercised to keep me feeling in control of this condition. It kept me focused and gave me power. I paid attention if I regained any symptoms I immediately "thought what did I do today or take into my body that would cause my estrogen to go down?" If I missed doing any of the above I would feel my sypmtoms come back right-away. And that's how I did it. Another thought I would like to put into everyone's mind. I can't remember if I saw it on this web site or somewhere else. But when vulvodynia was described it made reference that womens symptoms would worsen during the course of the day. Estrogen is at it's highest in the morning and then falls off during the course of the day. Just another clue!

Name:

Karen

Email:

Date:

13 Nov 2002

Comment

Sandy,I read your recent posting outlining what you did to get better. Very useful info! Just wondering -- are you still having to do all those things to maintain wellness? Or have you been able to stop some of it now that you're stabilized?

Name:

Sandy

Email:

Date:

13 Nov 2002

Comment

Karen, once I felt the tissue was healed and my estrogen levels were up I was able to introduce things back into my life. I added each thing (for example vitamins) a little at a time. I made sure I watched for symptoms. If my body was o.k. I would move onto the next thing. Like turkey. I waited to see how my body handle it. I remember the first time I ate turkey, I waited three weeks before I would eat it again. Just to make "real" sure I able to handle it. I now eat turkey on a regular basis. I take my vitamins. I stay in tune with my body though and always pay attention. I feel normal and I even eat sugar, but in moderation.

Name:

Paulette

Email:

Date:

13 Nov 2002

Comment

To Karen: How much Suma do you take and what potency? Also where do you find it and is there a particular brand that you like? What is it usually used for?

Name:

Sandy

Email:

Date:

13 Nov 2002

Comment

I realized I wasn't specific enough. I don't have to apply the vitamin E (because my estrogen level is up). I don't have to stay away from sugar (but again I'm aware it will lower my estrogen if go crazy with it). I don't stay away from oxalate foods either, because my natural mucus barrier is back to normal. I stopped the Black Cohosh and now use a progesterone cream, just a little in the morning and at night. If I forget to use the progesterone creme I wake up around 3 a.m. I investigated progesterone creme and was totally sold on it. I take acidpholus from time to time if I even suspect a yeast infection (and that's usually around the holidays when I can't resist the baked cookies). I know, for myself, that this all was a domino effect, and I know what got me in that condition and I know what got me out!

Name:

Donna

Email:

Date:

13 Nov 2002

Comment

Sandy-So, basically now you keep your estrogen levels high with the diet of protein and vegetables, and the exercising? What does the pregerterone cream do? Does it only help with the insomnia, or is it for the vaginal tissue too?

Name:

Donna

Email:

Date:

13 Nov 2002

Comment

Sandy-Forgot to ask you, how long did it take until you were totally healed?

Name:

Karen

Email:

karenjs@interlog.com

Date:

13 Nov 2002

Comment

Paulette,I'm taking Suma made by Nature's Way, but I'm sure there are plenty of other brands out there. The pills are 575 mg each, and I take 2 pills with breakfast and 2 with dinner. I've read that Suma is considered a "normalizer" in herbal medicine. It seems to help some people with various inflammatory conditions. It certainly appears to have helped my burning and stabbing pain to some extent, although I still have the irritation all the time, and I burn badly for a couple days after sex. It has just made my everyday life more bearable. It's not a cure, and I know it doesn't help everyone. I've seen postings from women here who have tried it and it didn't do anything for them. But I was desperate for some pain relief, and it's not expensive, so I decided to try it. I paid $12 Cdn. for the bottle of 100 pills. If you decide to try it, let me know how it goes. And please feel free to email directly if you would like to compare notes.

Name:

S.

Email:

Date:

13 Nov 2002

Comment

Sandy--You've posted a lot of interesting info. I was wondering how N.A.E.T. fit into your treatment? Did you find a marked improvement in your symptoms following your treatment? If you don't mind, I'm interested in finding out what auto-immune disease you suffer from. I'm currently on an info-hunting mission because my symptoms have increased in a noticeable way since the summer--my redness has spread to the outer part of my vulva, I periodically feel itchiness in both my vulva and my anus, I'm not sleeping as well, I'm very irritable (normally very upbeat), and I'm back to a lot of pelvic pain. These symptoms improved dramatically last year when I took an anti-fungal (Nizoral) for three months. My symptoms never truly went away (that's why I didn't post with a success story), but I was feeling happy, I wasn't focusing on my vulva all the time, and I certainly wasn't as sore. I was also cheating and consuming sugar once in awhile because I figured the Nizoral would take care of any negative effects. I didn't go see a doctor for a year except for my annual pap, and my husband and I were enjoying our renewed intimacy. However, I really fell of the wagon on my strict "no sweets" diet this summer. I also did a bit of drinking because I was visiting family. I had the attitude that maybe it was time to see if I could incorporate some treats into my diet again. Well, it seems that I over-did it. I'm so certain intestinal yeast can play a part in a person's well-being because a lot of research points to it. In my case, I have felt something has been "amiss" in my system for at least five years now, but my vulvodynia symptoms didn't appear until I took a strong course of antibiotics (Kelfex) for a minor bladder infection. The Keflex may not have caused the symptoms, but it triggered something in my body to manifest itself in such a way. I truly believe an alternative doctor is the key to guiding me towards better health. I have located one that sounds promising, but she's PPO, not HMO. Now I'm looking into purchasing PPO coverage for myself only (my husband and three children are blessed with steady good health). The doctor I'm interested in seeing offers N.A.E.T. as a treatment possibility. She also specializes in hormone balancing and menopause issues.

Name:

Karen

Email:

Date:

13 Nov 2002

Comment

Paulette,Forgotten to mention where to find Suma.... You should be able to find it in any good health food store. It's also called Brazilian Ginseng (although it's not really ginseng). Don't be talked into buying Chinese or Siberian ginseng -- it's not the same substance at all. You can also order it on-line. Just search for Suma or Brazilian Ginseng.

Name:

Debbie

Email:

isdeb2@hotmail.com

Date:

13 Nov 2002

Comment

I was diagnosed with vulval vestibulitus earlier this year, but if it weren't for my persistence I would have believed what my Drs were suggesting...that it was my imagination! Sex has been next to impossible for me and was the partial reason for the breakdown in my last relationship. Still no one has shown me how to manage this. Thankyou for starting this site...it was such a relief to discover that I am not alone in this. Also I noticed that in the start of this site you made the connection between rosacea and vestibulitus. I am wondering why as I suffer from both of these awful things.

Name:

Sandy

Email:

Date:

13 Nov 2002

Comment

To Donna: I don't know exactly how long it took to get better. With all the research and trial an error I would guess (when I knew what was working) a couple of months. Yes I kept my estrogen levels up with excercise and I do watch what I eat but by no means am I strict. My husband has been very valuable to me with insight he always gives me. He always says "Everything in moderation". So that's what I do. The reason I use progesterone cream is this: Women loose progesterone as they age, some women never produce enough progesterone even in their child bearing years and will experience all types of problems. The ratio of estrogen to progesterone I found is very important. It takes a large quantity of progesterone to balance the smallest amount of estrogen. Does that make sense. That's why as a women ages dieases like breast cancer (an estrogen dominant diesase) becomes more of a risk. Now you may ask after all this discussion of low estrogen, why would I be taking progesterone. One reason is; once I got my levels of estrogen up, I wanted to protect myself from being estrogen dominant (remember even the smallest amount of estrogen and lack of progesterone will make you estrogen dominant). It also protects women from osterporosis. My hair which was I loosing at the front of my head, grew back. It kept things in balance. That's just to name a few. The book I spoke of goes into such detail. I was told by a doctor that progesterone is not absorbed transdermally and I was wasting my money. So I decided to find out for myself if he was right. I paid for my own (salvia) lab test. My progesterone levels were very high where before they were nearly non existent. My levels were so high in fact I had to decrease my usage the creme. But I soon figured out how much to apply. I can't say enought good things about it. I hope that helps!

Name:

Sandy

Email:

Date:

13 Nov 2002

Comment

To S.: I have to get going, but I'll be sure to talk to you tomorrow about your posting. One more thing to Donna another thing that kept my estrogen up was keeping the depression that got me to that place, in check. Exercise helped with that too.

Name:

Mika

Email:

Date:

14 Nov 2002

Comment

Has anyone used one of the "spinal cord stimulator" implants for vulvar pain and if so, has it provided relief? I saw these on a news program this morning and wondered if this might be helpful to vulvodynia sufferers. We do not have them available in my area so I was hoping someone else could give me some info. Thanks and blessings to all.

Name:

Kathy

Email:

Date:

14 Nov 2002

Comment

I would like to know if any of you have any suggestions for something comfortable to wear around the house this fall/winter. This summer I wore knee-length casual dresses without wearing panties of course, and was quite comfortable. Now that it is turning cold, I would like to be able to wear something besides knit gowns and housecoats. Something that if someone were to come to the door, they wouldn't think I was too lazy to get dressed all day. I am very cold-natured, so I need something warm to wear. I don't work outside the home for the simple reason .....pants hurt! When I do go out, it is for a short period of time only. Thanks

Name:

Lesley

Email:

leslee2003@yahoo.com

Date:

14 Nov 2002

Comment

I have two questions: 1)My doctor wants me to consider trying Botox Injections since I have already tried so many drugs, creams, treatments etc.. without much success. Has anyone tried and benefited from Botox Injections and did you experience any short term or long term side effects? 2) I am also considering going on a low oxalate diet but I have heard that it takes a year to even know if you benefit from doing this diet and that this diet is difficult to do since you have to cut out healthy foods like fruits and vegetables! If anyone has tried it, did it work? and how long did it take before you noticed an improvement?

Name:

Lesley

Email:

Leslee2003@yahoo.com

Date:

14 Nov 2002

Comment

Hi, I wanted to respond to a few of the e-mails I have seen: Laura 11/10 and 11/12 e-mails, I have to agree with Dee's e-mail from 11/11 regarding bio-feedback. It's definately worth a try. But you do have to do it for two times a day for 20 minutes and it does take about 3 months to start noticing an improvement. I did the biofeedback religiously for 1 1/2 years and felt it helped. However, after about 1 1/2 years I was told by my Doctor that I could go on a maintenance plan where I only had to do the biofeedback every other night, for 20 minutes one time. Once I cut back on the number of times using the bio feedback I got worse and now I am for the most part back where I started. But like Dee said it is hard to find the time, so right now I try to do the biofeedback once a night for 20 minutes before I go to bed. I do believe it helps a little bit. To Jen 11/11 e-mail. I have tried the Elmiron and it does take two or three months to see if it works and it is supposed to releive and reduce the pain and inflamation that you are experiencing. However, I tried it and did not notice any change. I also tried lidocaine which irritated me more. What is so frustrating is what works for one person may not work for another. So bottom line, try the Elmiron and see if it works for you - good luck. To Dee from 11/11 e-mail and Debbie from 11/13 e-mails, I can completely relate to the whole sex issue. I haven't had sex due to the fact that my pelvic floor muscles are contracted and that not only did I have pain with sex but my boyfriend experienced pain as well due to my muscles being so tight! So a few things I am working on with my physical therapist related to sex/pain/relaxing the pelvic floor muscles etc: I do the bio-feedback once a night for 20 minutes (although she suggests I do the biofeedback two times a day for 20 minutes). I also do trigger point massage to stretch and de-sensitize the pelvic floor muscles/tissue. I use dialators to stretch the muscles as well. My physical therapist also suggested doing several leg and lower back strethces to loosen up the muscles in my back and pelvic area. I recently tried to have sex with my boyfriend and we did notice a difference, so I think it is helping but I still have a long way to go!! I am not at the point yet where I can say that I am feeling better or have noticed a significant improvement because things are far from fine but I am trying to stay positive. And I do believe in the use it or lose it! The best way to resolve this (more than one doctor has given me this advice) is to work on having orgasms at least a few times a week, via spouse, signifacant other, masturbation, vibrator etc....... You know your body best and the more you can experience pleasure instead of pain or anticipating the plan, it will help you physically and mentally deal with your condition. Sorry for such a long e-mail but it's nice knowing that I am not alone and if I can share what I have tried, who knows maybe it will help you. Be Strong!!

Name:

Emily

Email:

eroyce@smith.edu

Date:

14 Nov 2002

Comment

Donna and Lynn: I also have "the burning bush." It's worse with underwear or other contact. This summer I had the sudden impulse to trim, wax, pluck, and shave. Once the pain of that wore off I swear my vulvodynia symptoms weren't as severe. No one would believe me and then I started to doubt myself, but I also didn't know that everyone else didn't have overly-sensitive pubic hair. It's a pain in the ass to keep up, but in moments of desparation maybe I'll resort to it.

Name:

Sandy

Email:

Date:

14 Nov 2002

Comment

To S.: In answer to your question I have endometriosis. I've been successful in the treatment of that diease through N.A.E.T.'s. I DID not start with that type of treatment until 1 1/2 yrs. after I healed myself of vulvodynia. I think highly of it. I do want to caustion you though. The first person I went to (who treated me with N.A.E.T.'s) was not very good at all. This was back in my early thirties. I became so skeptical of the method after that, that I didn't want to ever try it again. A friend of mine told me about someone she found and trusted, but it took my friend a year to talk me into it. I'm glad she did. There's one more thing that I came across in my notes about my diet and I remember I asked this earlier. Then my acupuncturist just reminded me about it again of how significant it is. That is HAVING AN ACIDIC BODY. The burning you experience from discharge from the vagina. The itching created by the yeast that thrives in the acidic environment. You must balance your ph. I hope this is helpful! Donna maybe this is the final thing that gets you healed?

Name:

Sandy

Email:

Date:

14 Nov 2002

Comment

Lynn, how are you making out?

Name:

S.

Email:

Date:

15 Nov 2002

Comment

Sandy--Does your NAET practitioner have a website address so I could check out what s/he offers? Also, how does one go about balancing her P.H.? Sounds complicated with a lot of trial and error!

Name:

Sandy

Email:

Date:

15 Nov 2002

Comment

TO S., DONNA OR ANYONE DOING THE NATURAL APPROACH: After I posted last night I started to look through my nutritional books. In one of the pages I had written some notes. I couldn't sleep this morning because I was so excited about it. This is what I found. I had wanted to prove to myself that acid was the thing that was not allowing my body to come back fully. I'll explain. While the estrogen caused through the depression was the catalyst my body was acidic. I now know that from all the research and the clues my body was giving me. Yeast was loving the acidic envirnoment. The more I "fed" it with acidic foods there was no way I was going to get better. So I wanted to prove this theory to myself. I ate more alkaline forming foods. But one thing I tried and felt the effects almost immediately after eating was milk! It neutralizes the acid. I paid attention to see if vulvular area was better and it was! The itching and burning was gone. The muscle relaxed even more. But it only lasted to the next meal. Because my body was SO acidic. But it proved to me I was heading down the right road. Now here is the problem. Some of the akaline foods that are helping you neutralize your ph can create more yeast! Confusing huh. Things like fruit, wine and yes even milk! The yeast itself causes an environment that is acidic. There's that vicious cycle again! So this what I did, I realized that if I could just keep the yeast in check while I changed my ph over from acid to more neutral environment this would help to get things back into balance, even my estrogen! I would use acidopholus (like I explained earlier) and I went back to the health food store and asked for a product that would help with changing my bodies acidic ph. But I didn't write the name down. If you go to the health store they'll be able to help. I'll try to find out too. Don't be shocked, but I think it was a gallon container and cost about $50. It wasn't the most pleasant thing to take either. For me this was the nail in the coffin for fixing the imbalance I had created again through my estrogen depletion and then everything falling out of balance. S., the clues you gave in your posting fit into this theory (the itching, etc.)! The sleeping problems, I felt was from lack of estrogen, but I'm starting to think all this stuff ties in too. As-far-as my practioner, she does not have a website. Just make sure you are armed with enough information about your condition that you will be able to determine if you feel she's taking you down the right road. I can't stress enough being an active participant in your well being. Don't just hand your health over to someone else and hope they "fix" you. You are your best judge of what's happening to your body. If anyone does try the milk theory could they post and let us know their results (but you have to use acidopholus too)!

Name:

Sandy

Email:

Date:

15 Nov 2002

Comment

I just got back on line because I just thought of something. First I want to apologize (hugely) to the person who wrote in and said yeast was the culprit. I had told them that it wasn't and they missed my point. I WAS WRONG! See if this makes sense. Say you've always been on the acidic side. Maybe foods have bothered your stomach from time to time. Or maybe you are a sugar addict. Or maybe your nose ran during a cold and it burned a little. Look for your signs. Yeast was there causing those conditions lurking in the background just enough to give maybe a little problem, but not enough to cause to do anything. But say if something happens that allows it to get out of control, like the lose of estrogen then the chemically domino effect can through you into all kinds of problems. The biggest vicious cycle in all of this is the yeast creating the acidic envirnoment and the acidic environment causing more yeast! We've been lucky all of our lives with the help of estrogen (it was keeping things in check). It acted as a cork sort to speak. But things that we've done or events that created the spiral down fall got the yeast to cause havick! S. I'm going to get cleared for yeast by my N.A.E.T. practioner. The only problem is that I have to have 10 days devoted to a special diet she gives me. I don't ever want this condition to come back. I can't believe I haven't done it already. I've just been putting it off. I never thought of it along these lines before. WOW AMAZING!

Name:

laurel

Email:

Date:

15 Nov 2002

Comment

Hi Lynn! Glad to see you make an appearance! Dr davis is wonderful, and I have been in contact with the Paragon clinic in chicago, who believe my problems are yeast related! I am making plans to fly there in a few weeks, they have a great program because I have CFS and fibromyalgia, but they are aware of v.v. They sent me a yeast test to fill out, and anything over 150 is almost certainly yeast causing. I scored a 314!! Please, dont overlook this phenomena as a cause. The Yeast Connection and the Woman has the same test in it's book, so I urge others to go and read this wonderful book. You dont have to have the usual yeast infection to have a candida or parasitic infection, so dont let that discourage you from looking into this. It can be cause by eating lots of sugar, bc pills, antibiotics, just to name a very few. be well, laurel

Name:

Cassidy

Email:

Date:

15 Nov 2002

Comment

To Sandy: I think you just hit on another piece of the puzzle. I think that being too acidic is part of the problem. My pain would usually start after I urinate. I could be fine all day until I would go to the bathroom. That seemed to start it all. I thought at one point I was allergic to my own urine. It would burn as if it was too acidic. I never tested it ( you can get test strips at any pharmacy). The normal range is 6.5 in the am and 7.5 in the evening. Below this is acidic and above is alkaline. I am going to start testing my urine. I think having acidic urine makes the yeast thrive. I read on the internet that most carbohydrates and meat and poultry cause an acidic environment and fruits and vegetable are alkaline ( even citrus fruits like oranges and grapefruits). If you can remember the name of the PH balancing vitamins or herbs you took please let me know. Thanks a million!!!

Name:

Jen

Email:

sjnlk@aol.com

Date:

15 Nov 2002

Comment

Hi eveyone. I've been reading all of the postings and would like to know if there is anyone out there who has swelling, redness, discharge and irritation. I don't have "pain" as some of you are describing. I'd like to know if there is anything helpful for these symptoms. Thank you.

Name:

Jen

Email:

Date:

16 Nov 2002

Comment

Just wanted to let you know that they sell something called PRELIEF for about ten dollars in all stores.It takes out most of the acid in food like tomato sauce, coffee, yogurt, orange juice, ketchup and so on. I just bought it yesterday hoping that it will help with my IC and vestibulitis.

Name:

Email:

Date:

16 Nov 2002

Comment

I just thought I would give a suggestion for people who live in cold climates and can't wear pants. I wear sweatpant like skirts around the house with leg warmers. Leg warmers have been a god send to me. Just type in any search engine, leg warmers and you will find many websites that sell them.

Name:

Melissa

Email:

vdaino@earthlink.net

Date:

16 Nov 2002

Comment

Having suffered with vulvar vestibulitis for 4 years, I have just been to see a new doctor in Philadelphia with a wonderfully optimistic attitude. She has prescribed Atropine and Estradiol. Both are in an olive oil base. Has anyone tried these two? I have only been using them for about 2 weeks.

Name:

Kathy

Email:

Date:

16 Nov 2002

Comment

Thank you to the friend that suggested the legwarmers and the jersey-knit skirt. That's a great idea. Thigh-high pantyhose are too thin and I think the legwarmers would be alot thicker, thus keeping my legs warm. I'll bet if I would unpack some boxes in storage, I would probably find some I wore in the "old days", many moons ago!!!

Name:

Emily

Email:

eroyce@smith.edu

Date:

16 Nov 2002

Comment

Is it safe to assume that foods that give me cankersores are too acidic for my body? Pineapple and Strawberries are the main culprits, but there are more.

Name:

AZ resident

Email:

Date:

17 Nov 2002

Comment

I'm looking for a support group or freind who lives in AZ that I can talk to about my vulvodynia. I am a black female that is 25 years old. If anyone of you are interested, please message me back.

Name:

Email:

Date:

17 Nov 2002

Comment

I am on 10mg of Elivil. I just started on them about 5 days ago. Is there anyone that takes them that notice a significance change? Any side effects? Please let me know.

Name:

LYNN

Email:

Date:

17 Nov 2002

Comment

Hi Laurel. It's nice hearing from you again. I have not been on this site in a long time-perhaps over a year. Anyhow I'm doing fine, but I did have a major pain the other day, I went to see Dr. Davis and he told me that my ph was very acidic and that I needed to douch with baking soda and warm water twice a week for a month. Other than that, I've been okay. The surgery I had nearly 2 years ago, still is great. I'm glad I had it although sometimes I think I rushed into it and that I couldn't have been treated some other way for my vestibulitis. I sort of regret the surgery, but at the same time, I'm just thankful I don't have to worry about vestibulitis anymore. For the most part, I just have to be careful of my diet, just stay away from too much sugar and acidic foods and I'll be allright. Have you heard from Stephanie? You remember her? She's the other black girl that lived somewhere down south and the last time I heard from her, I think she said her and her husband were seaking a marriage counselor. I wonder how she's doing. Well message me back if you will. I'm going to try to get back on this site everyday like I've been. By the way, just to let you all know, I have lost about 20 pounds in about a year because I've been watching my diet, trying to avoid bad foods. I get negative attention from people because they think I'm sick or that I'm anorexic. Of course don't have a clue of the things we all have to go through just to avoid pain to live a painfree life.

Name:

Lynnze

Email:

Date:

17 Nov 2002

Comment

I'm adding a ze at the end of my name because I saw there was another Lynn was ahead of me so you won't get confused. I just started writing a week ago and have been soaking up all of Sandy's info. Sandy you just amaze me with all that I've learned from you. I 've found out more from you than my own doc. I went out and bought the book you suggested by John Lee and another called the V book by Elizabeth Stewart. Great info in them and plan on reading thru them this week. I'm also changing Docs. a friend suggested this Doc. who is supposed to be a hormone guru so I'm excited! My burning did go away for a few days and then came back but I've been loading on the Estrace cream and I swear its been helping. I'm going to ask this new Doc. Friday about getting the hormone cream compounded without the stuff in it that makes it sting. I pray for all of you and Sandy did you say you've been pain free for three years now? thanks for the messages, it so helpful when I hear I'm not alone in this.

Name:

Email:

Date:

17 Nov 2002

Comment

Do any of you out there have the HPV virus and do you think it has anything to do with this? I had it years ago but had no problems until this burning about 10 years later.

Name:

Frank B.

Email:

Date:

17 Nov 2002

Comment

Regarding H.P.V.: You will find that some women who have vulvodynia have H.P.V., just as some sufferers have herpes and or other s.t.d. or health conditions. So far I have read of anyone making a connection between these illnesses and vulvodynia. Unfortunately we have a lot of speculation and very little research into the real causes of these symptoms. The many doctors my wife has seen have not been able to tell her why the skin in one area thinned out and tears repeatedly. Unless the results of several tests for h.p.v., herpes, several other s.t.d. and hormones have all been wrong we can rule out what it isn't. We are left wondering what it is. You are all in my prayers!

Name:

Marisa

Email:

magongora@hotmail.com

Date:

18 Nov 2002

Comment

Has anyone ever bled after intercourse? I know it's rare for us to actually be able to have sex but I did today with my boyfriend. It actually didn't hurt much during the act, but afterwards I went to the bathroom and when I wiped myself I was bloody (sorry for this being gross.) I still was like this even an hour after having had sex. I don't think our sex was in any way rough that it would produce enough friction for me to bleed. Does anyone know if this is normal? I'm trying not to worry too much. I will call my gyn and see if he can fir me in this week.I've loved gearing what Sandy has posted. I'll run some of the ideas by my homeopath and see if he thinks this stuff would work for me, too. I'm supposed to be having a sugarfree, breadfree, dairyfree diet but I'm struggling, especially avoiding chocolate, since I have it out for my students.To the person inquiring about side effects of elavil. i took it and noticed dry mouth when I was at 25 mg. At 50 mg I was miserable with severe dry mouth and quite a big weight gain (10-15 lbs). I switched to noritriptyline and I'm at 25 mgs (thankfully I lost the weight). I've noticed an improvement. i felt little pain during the Qtip test and can now have intercourse for about 10 minutes, although I sting for one to two days.

Name:

Email:

Date:

18 Nov 2002

Comment

To the person who asked about HPV:There is ABSOLUTELY a connection for some people. Remember, there are many causes of v v , and HPV is one of them. From my experience, the INTERFERON INJECTIONS work for people with v v as a result of HPV. If you test negative nowadays for HPV, ask for the new and improved ultra-sensitive test which will probably pick it up.Good luck to you!

Name:

Email:

Date:

18 Nov 2002

Comment

Hi:This is for the person who responded to the question aboutHPV. Do the interferon injections, stop the burning associated with HPV in the vulvar skin?If so, how many injections are needed and what are the side effects? Thanks.

Name:

Email:

Date:

18 Nov 2002

Comment

My doctor said that hpv doesn't act like that and a specialist also said the same thing. They said there is no burning with hpv. How did you know the burning was caused by the hpv and then decided to have the injections?

Name:

Email:

Date:

18 Nov 2002

Comment

I had a cycle of 12 shots of interferon and it did stop the constant daily burning about 3 weeks after the last shot. I no longer test positive for HPV. Coincidence? Doubt it! If you have other problems along with the HPV it may not work as well, but it's certainly worth asking a doctor about (specifically a OB GYN who specializes in infectious diseases such as William Ledger in NY). Not all OB GYNs will know about interferon, the ultra-sensitive HPV testing, etc.)

Name:

Email:

Date:

18 Nov 2002

Comment

Thanks for responding again about the interferon shots.I understand 12 shots in a cycle, but what about the side effects? What are they? I was just wondering about itand are the shots worth stopping this constant burning, I think it would be, but I want your opinion since you havebeen through this. I don't believe what the doctors say about hpv, it does burn.Thanks again.

Name:

Email:

Date:

18 Nov 2002

Comment

I'm not sure if my last post got admitted so I' might repeat myself. Did you have sex with a new partner and the burning started? They say 80% of the pop. has hpv and doesn't know it. Wouldn't there be a lot of women out ther with burning crotches? Were you tested immediatley afterwards to see if you had hpv? And how do you know you didn't have it along time ago? I know theres lots of different strains so did the test tell you what one you had and did they say thats the one that causes burning? They say now that after a few years the virus tends to burn itself out. I'm just freaking out here but I don't want to believe that causes it. I'm happy for you that the shots worked but my specialist still says the burning isn't causd by the virus. How do you know who to believe? I figure shes seen enough of it and should know about it. My burning comes and goes and its worse at evening, If its caused from the virus wouldn't it be all the time?

Name:

Dee

Email:

Date:

18 Nov 2002

Comment

Sandy, I know you mentioned it before, but could you tell me how much SUMA and Black Cohosh you took everyday. The bottle of SUMA I have says to take 1 to 2 capsules a day and they are 500 millligrams each. The Back Cohosh is 200 milligrams and the bottle says to take 1 tablet a day. Did you take more than this? Could you elaborate? Thanks for your help. Also right now I'm on Nerontin. I just started. The doctor wanted me to increase gradually. At this point I take 200 to 300 milligrams a day at 100 milligram intervals. A person can take up to around 3000! a day. The first time I took the SUMA, BLack Cohosh and 100 Milligrams of the Nerontin all at the same time. About a half hour later I got the shakes and the sweats and my body wanted to throw up. I had nothing to throw up because I took them when I first got up in the morning and I realized I didn't have anything to eat. It only happened once and now I make sure I have something in my stomach beforehand. Did you have any of these problems or now anything about taking the herbs while taking Nerontin? Thanks again.

Name:

Email:

Date:

18 Nov 2002

Comment

The side effects of the interferon shots for me were minimal. I felt like I had the chills for the 1st 3 or 4 shots -- that's it. My burning did not coincide with a new partner. Much to my surprise I tested positive for HPV (on a pap smear) and almost immediately had laser surgery. Back then I was asymptomatic. Perhaps they didn't get it all... About 3 years later at Ledger's office I tested positive again for HPV using the ultra sensitive test. It didn't show up on a regular one I had a few months before. He had urged me to re-test because HPV is known to cause burning the more it manifests itself. Like any other virus, of course you can have varying degrees of pain throughout the day. I'm sure herpes is the same, although I never had that.Anyway, after the interferon I no longer tested positive for HPV and it did indeed relieve the constant burning. Hope that helps. It may be your problem, but then again there might be a combination of factors for you. I'm not sure what else to say. Good luck.

Name:

Karen

Email:

Date:

18 Nov 2002

Comment

To the women who asked about bleeding after intercourse.... I have also had that problem, although not every time. The bleeding was very slight and didn't last more than the first hour after sex. I do burn for one or two days after sex, every time. I think the bleeding happens when that skin is severely inflamed. Any friction on that inflamed skin would cause some minor bleeding. You should definitely mention it to your doctor though, so he/she can rule out other possible causes.Regarding HPV.... I have it, but my doctor insists that HPV wouldn't cause the widespread irritation that I have. I'm not sure I believe him.

Name:

Email:

Date:

18 Nov 2002

Comment

Where did they give you the Interferon shots at? I mean what part of your body? And now you have no burning at all? What is interferon? Thanks for the info.

Name:

Sandy

Email:

Date:

18 Nov 2002

Comment

Just to let you know, I haven't forgotten you guys. I've been doing some research and will let you know what I've found out! I do have a question though, the HPV is that Herpes Simplex one or two? Thanks!

Name:

liss

Email:

missadancer@aol.com

Date:

18 Nov 2002

Comment

just looking

Name:

Email:

Date:

18 Nov 2002

Comment

RE: HPVAll I can tell you is that I have been tested for nearly everything all NEGATIVE, except for HPV and let me tell you it burns a great deal. I was also toldmy an expert that it doesn't burn, but then I am the one experiencing the pain, so I know it burns. I do notpost here unless I have gone through it and I know for sure that is the case. I must say I am hopeful in readingthe other post regarding the interferon shots and I willcheck with my doctor immediately. I believe this is wortha shot. By the way, my hpv diagnosis was done by biopsyand I had 2 different pathologists confirm. I am alwayspuzzled when I read on this site that the person was toldthey did not have hpv and it was not confirmed by biopsy.One must have a biopsy to confim hpv.Thanks again to the person who responded to me on the interferon shots. You are a big help on this site.

Name:

Frank B.

Email:

Date:

18 Nov 2002

Comment

Regarding the last post and H.P.V.: My wife has seen five different doctors regarding her sympotoms of vulvodynia, I have been to these visits with her to ask questions. I have been examined by the urologist who performed my vasectomy. Through question, blood work and swabs and physical exam we were reassured neither of us have or had any s.t.d. . I have been with one other woman in my fifty years of life and my wife has only been with me. I am not complaining or bragging when I say this. Maybe for some women their symptoms are linked to h.p.v., neither of us have ever shown any indication of this or any other s.t.d.. According to the endocrinologist hormones are not a factor either. Her present doctor was going to do a biopsy of the tear to rule out lichens but she was afraid to make things worse so she changed her mind. All we have is guess work and speculation. The tests reveal nothing and since there is no research we can keep guessing and treating the unknown. I got away from my main thought which is that maybe according to you a biopsy is necessary to absolutely rule out h.p.v. but I just don't think we have have it and I'm willing to bet many women who do, do not suffer with the different symptoms of vulvodynia. You must know what you are talking about but I know our sexual history and prior to two years ago there was no tearing and our sex life was amazing. Something changed. I still don't understand why it is so darn difficult to find out what it was that happened. Where is the research? Where are the scientists? My wife was told to go back to the expert here in Ct, dr. horowitz. She said what for, to get medicated with elivil? They aren't doping up men who have sexual problems. Men get research and stuff like viagra. Women get antidepressants! Something is very unfair here and it isn't h.p.v. .

Name:

Marisa

Email:

magongora@hotmail.com

Date:

19 Nov 2002

Comment

Thanks for responding, Karen. I called the advice gyn nurse at my medical group and she thinks I'm just bleeding between periods. She said to monitor and if it happens again, to go in for a visit. They always want you to wait and see. Frustrating. You said that the skin was probably inflamed but it must have been from pretty deep inside. Not sure why it would be inflamed there because I'm always sensitive at the 6 o'clock area. Regarding HPV, according to Dr. Stewart from her V Book, she doesn't believe that HPV is necessarily the culprit because it's a skin disease, not a nerve virus that can cause pain. She says that in the 80's this theory was being used, but in her footnotes, she lists a lot of articles/studies, that found no connection. Something to think about, but as we all know, the medical field doen't necessarily always know what it's talking about.Regarding alkaline foods creating too much yeast in the body, I just bought a book called the Body Ecology diet. Has anyone tried this diet? It seems pretty strict and I don't know if I'm up to it. Any input would be great.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

I found something for everyone thinking that it may be the yeast that is a problem. It TOTALLY relates to all that we talked about earlier. It's in the book Women's Bodies, Women's Wisdom by Christian Northrup, M.D. Page 301 and I'll quote it: Most vaginal infections make their presence known by a BURNING or ITCHING sensation, sometimes accompanied by a change or increase in vaginal discharge. Anything that disrupts the pH BALANCE OR BACTERAIL BALANCE of the normal vagina can result in an infection. The time you're most likely to get a vaginal infection is during or right around your MENSTRUAL PERIOD, WHEN YOUR MUCOSAL IMMUNITY is at its LOWEST point in the monthly cycle. The pioneering work of Dr. Charles Wira on mucosal immunity has shown that immunoglobulin A and M are affected by the levels of ESTROGEN AND PROGESTONE. These homonal levels decrease just before the onset of a period, making you more vulnerable to infection. The immune system thus mirrors the emothional permeability of this time in the cycle. Some women experience a similar sensitivity to infection after menopause, when both HORMONE LEVELS AND MUCUS PRODUCTION drop.

Name:

Karen

Email:

Date:

19 Nov 2002

Comment

I've just found an amazing book that might help others... It's called "Screaming to be Heard - Hormone Connections that Women Suspect but Doctors Still Ignore", by Elizabeth Vliet. I've only just started skimming through it. It's heavy reading, but I think there's some fascinating information in it about the effects of hormone imbalances. I hope it helps someone.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

Dee- Just wanted to answer your questions. I did not use SUMA, only the Black Cohosh. It's just my opinion, it seems to me SUMA as it's been described acts as an anti-inflammatory. That's fine, but to me it's like taking an aspirin for a broken foot. As soon as you stop taking it, the pain and swelling come back. That's just my thought. I had to look for the cause and I'm quite convinced (and I proved it because I healed) that high levels of serotonin was the problem. The Black Cohosh I took was a brand name: Remifemin, used in Germany as an alternative to estorgen therapy. I hope that helps.

Name:

M1

Email:

Date:

19 Nov 2002

Comment

A couple of thoughts and questions from reading recent posts: To the person talking about the ULTRA SENSITIVE HPV TEST - what's it called? Digene Hybrid Capture? It would be helpful if we could ask our doctors for something specific . . . When I go to see my doctor and ask for the "Ultra Sensitive" test and he doesn't know what I'm talking about - I'm out of luck, ya know? Also, if it is the Digene, that only looks for about 17-18 types of HPV - there are at least 70. FRANK, I know your wife is having a hard time, we all are - but if she won't get a biopsy to look for L.S. (or HPV for whatever that's worth) it's not fair that you complain about doctors and guess work. There are things she can do - but if she won't do them - that's not the doctor's fault! I've had a number of biopsies myself - they are not fun - but if L.S. is suspected they are necessary. Try to convince her to give it another go.

Name:

Karen

Email:

Date:

19 Nov 2002

Comment

Frank - We all share you frustration. I can't help thinking that if men suffered from some inflammatory condition that made sex painful, the drug companies would be falling over themselves to find a cure. The Viagra ads on TV make me furious.If I were your wife, I'd want a biopsy. If her tearing is caused by one of the lichen skin diseases, then it can be treated. I'd want to find out. Has she tried Estrace cream? It might help to toughen up that skin.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

Cassidy- I'm sorry I forgot to answer you. You asked about the acid lowering powder I took. I'm starting to think if I was to do the healing over again I'd do one thing differently. I think things would have gotten heal much faster if I could have figured out why I was acidic. I didn't, I just tried to correct it. Which I have now learn is the wrong way to approach it. I really think the yeast which is CAUSING the acid condition is the problem. That is the thing that has to be dealt with. There are several ways in doing that. I checked at the Health Food Store. They have a product that detoxifies the body of yeast. But there is more to it and I will go into that tomorrow. I will be seeing my acupunturist and I have some questions for her that I will share with you tomorrow. LYNNZE- Sorry I also wanted to answer your question, it's been over three years now. I've learned a lot. I just want to get you to the goal line too! And I see everyone making connections, I think that's great!

Name:

M1

Email:

Date:

19 Nov 2002

Comment

Something important I want everyone to know: I've been using Tea Tree Oil Vaginal Suppositories by a company called Thursday Plantation on and off for over a month now. While this has not been a "cure" for me - it has been a great relief in symptoms for a day or two after use. They have not been irritating in the least!! When they melt they feel a bit warm (in a medicinal way, like Vick's Vapor Rub), which scared me a bit at first - but using them has been great. I know Tea Tree Oil is suppposed to be a good yeast fighter - I, personally support the HPV theory, but whatever, I don't know why this seems to provide relief. As I said, not a cure (for me at least), but sometimes it is soooo good to just get some relief for a day or two . . . I highly recommend this!!

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

I know there are a lot of people that are frustrated. I just want to share one more thing. I learned through my condition that if I was feeling frustrated how could I change that feeling. I'd ask myself "Was I going in the right direction?" "I was I missing something?" A friend told me that if it feels like you're swimming against the tide your going down the wrong path. She said when you go in the right direction it should feel like the water is carrying you. I applied that philoshopy and use it to this day. I hope that helps someone else.

Name:

Karen

Email:

Date:

19 Nov 2002

Comment

SANDY -- HPV is not Herpes. It is Human Papilloma Virus. There are about 70 different types of HPV. Some types cause visible warts. Other types cause cell changes on the cervix, which show up on pap test results. It is estimated that 30-40% of the population have the virus, but in most people it doesn't cause any symptoms at all. I have never had warts, but I did have an abnormal pap test -- abnormal cells on my cervix, caused by HPV. I had the cells removed, and I'm fine. However, I have a red, irritated, burning rash on the entire vulva area, and I have my suspicions that it might be caused by HPV. My gyn insists that it is not. There is a lot of discussion about this in the medical community.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

Karen- Thanks!

Name:

Email:

Date:

19 Nov 2002

Comment

This is a very frustrating site, I have to say. Is it just me, or is half the info posted misconstrued? 1. Frank: No doubt in my mind that your wife does not have any stds. No one ever implied that she does. I think in my post I wrote that v v has MANY causes. That means for some HPV is the answer. For others it may be neurological... For others an infectious component...For most the cause is unknown and that is the frustrating part. I was responding to questions regarding HPV and never meant to imply that everyone here has it because that is certainly not the case.2. To the person who wrote that SUMA only temporarily relieves symptoms sort of like aspirin does. That's not what has been posted here on numerous occasions. It turns off the cycle of pain for those who have the gene UNTIL THE CYCLE IS TURNED ON AGAIN. For instance, one takes the SUMA because they gave birth and they want to bring the inflammation level back to normal. They succeed and go off the meds. A year later they have a yeast infection from sitting around in a wet bathing suit. They take the meds again to turn off the cycle. That's how it works. And for the upteenth time, it will not work unless you have the gene. Those who take it without knowing whether they have it and post that it doesn't work are doing a great diservice to those who may benefit from it. It is also very unwise to mix it with other meds as the women on Neurotin or whatever that drug is called is planning to do. But that info has been posted here for all to read as well.As far as what the sensitive HPV test is called, I have no idea. Maybe someone else her does? The name of a doctor who is willing to take calls from your personal doctors and answer their questions has been posted repeatedly along with his number. I am TRULY sorry to sound frustrated and crazed, but I feel like I am watching people chase their tails. All anyone wants by coming here is for some of you to feel well again. No one should suffer the way you folks do, and while there isn't a single person who posted here that can help EVERYONE on the site, there have been specific posts that have been directed to those with similar problems who may find the info useful. I never comment on the posts about the low oxolate diet stuff or the posts about hormones for instance, because I have no experience with it, it never was my problem and I know the info may be useful for someone else even if it doesn't pertain to me. But I don't try to discourage others from checking it out.I hope my point is well taken. If not, I give up!

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

Karen: Just a thought have you applied vitamin e to see if you had a protected barrier (which you may be lacking from low estrogen). Would your rash clear up? Did you experiment with that theory? There is a whole section in the book I spoke of today about things that can cause an allergic reactions. Have you gone down that road. That would be a place to start and see if things get better then you can start to rule things out or in! What do you think?

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

To the person who is so frustrated with misinformation. I think you've missed the point! Maybe your feeling frustrated because you don't get it. Here is the things it's seems you've overlooked. The connections you speak of with women who have had pain after birth, do you not see the connection that their hormones have changed? And possibly they're experiencing the swelling because of low estrogen and rising serotonin? Do you not see the connection between the yeast AGAIN as a component to this whole thing!

Name:

Karen

Email:

Date:

19 Nov 2002

Comment

I've tried applying vitamin E regularly for over a month, but it hasn't made any difference. My situation is definitely inflammatory, but I can't figure out what's causing the inflammation. I have NO trace of any type of yeast in my cultures. The allergy theory makes sense. I've tried to determine if there's any relationship between the pain and foods I eat, but can't find any connection. The next time I see my doctor I'm going to request allergy testing, plus I'd like to get a prescription for Atarax (a powerful antihistamine), and see if that helps.

Name:

Frank B.

Email:

Date:

19 Nov 2002

Comment

To Karen & All: I'm sorry if I seemed a bit upset with my last post this whole thing is very frustrating. I know no one was suggesting she had a s.t.d. and I really am not insulted with such a reference. We need answers and if examinations and tests revealed s.t.d. then great at least we have an idea of what is causing the problem. S.T.D. are very common and do not suggest anything negative about the person who has them, so don't think I'm some kind of perfect person thinking poorly of folks who have sexual disease. Karen you mentioned the biopsy and my wife did have a colposcopy and does not display signs of lichens although I think that was what this last doctor was looking to rule out. We can't force the doctor to do a biopsy and she is afraid to do more damage. She had my wife using Clobetasol Propionate Ointment on the tear site for over a month, she said it was used to treat lichens just in case. This has not helped either. Regarding Estrace cream, my wife used it for months proir to and after surgery to form a new scar near the tear site . If you have not read from guestbook thirteen when I started to post that is around the time she had this surgery. Her gyn repaired a rectocel and reapaired some underlying muscle tissue that was cut during one of three episiotomies. She used the estrace for six weeks after the surgery and we abstained from sex for the same time. Once we attempted to resume relations even though she is well lubricated and we use extra lubrication the tear reappeared. This is a small cut like a paper cut about an eigth to a quarter of an inch long and not very deep although I'm sure very painful. My wife still insisits we have sex and we take it very easy. Iike I've said this is very frustrating. So many women suffering one or more of these painful symptoms. I don't think there is a common denominator for all, maybe some have similar causes whatever they are. I am thankful for this forum and the chance to exchange ideas like this. Hopefully one day all our questions will be answered, until then it is good to know that some have been helped and others at least have a place to vent. Thank you.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

Karen: Are you acidic? Have you checked your first urine of the day pH level and swabbed your mouth first thing in the morning before you ate anything to find out the pH?

Name:

Email:

Date:

19 Nov 2002

Comment

Regarding : Antidepressants and HPVI don't feel "doped" up on an antidepressant, it truly helpswith the pain I suffer with each day. If you read in drugmanuals there are numerous drugs that are originally prescribed for one illness and then used for another. Don't put down an antidepressant without having tried it to ease the pain. Yes, I agree this is not a cure and it is prescribed for us with this problem because the doctors don'tknow what else to do for some of us. Someday, if we are lucky, there may be more advances and a medical cure,but until that time isn't it foolish not to take a medicationbecause it has the "label" of anitdepressant. If viagra werefirst introduced as an antidepressant and then found out to help men with their dysfunctions, you bet they would still take it and people would not put a label on it or attacha stigma to it. Sure, I would rather not take an antidepressantto ease my pain, but I am grateful that they are prescribedbecause they help. Again, don't put treatment down withouttrying it. Regarding hpv: Doctors cannot determine by just examinationof the skin that hpv is not present. Only by an actual biopsycan the diagnosis be made. There are a few of us out therethat have been in exclusive relationship with just one personfor their entire life and still contract hpv. It happens. Biopsy is the one way to determine if the virus is present in the skin even if there is no visable evidence of hpv.If you think hpv is causing your burning, read up on it, educate yourself on the virus.

Name:

Email:

Date:

19 Nov 2002

Comment

Sandy:How hostile. From my own experience I know what I have and what I don't have because I have been tested for everything under the sun repeatedly. Yeast and hormones included. I used those examples when trying to explain how the SUMA works because they were easy to think of.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

The best of luck to you.

Name:

Email:

Date:

19 Nov 2002

Comment

Sandy: While your posts have been interesting, and probably very helpful for some - it seems as though you have decided that everyone's problems are caused by yeast and hormones. You should go through these guestbooks and read carefully - There are a number of women who have recovered from VV and it did not involve yeast and hormones!! The anon. post above makes some excellent points - and it seems you are CLEARLY the one that missed the point!! Are you suggesting that the only possible cause of inflammation after child birth is hormones? How about the simple fact of the process of pushing a 10 lb. baby through a vagina??! If you overstretch ANY part of your body - you risk inflammation - this really shouldn't have to be explained. There may be inflammation without hormonal problems. If you have a yeast problem and you know it - then there it is . . . But if there is something that can help with residual inflammation after the yeast is gone - why not use it?? If chronic yeast and hormone imbalance is your problem and you have worked that out - great, we'd love to hear about it. The anon. post stated facts that you should already be aware of if you have been reading: EVERYONE'S SYMPTOMS ARE NOT CAUSED BY THE SAME THING!!

Name:

Email:

Date:

19 Nov 2002

Comment

Sandy aren't you the one who, just a few posts before asked if HPV was Herpes type I or II?? If you don't even have the very basics down at this point - who are you to come down on someone else who has some well-thought out information to share? Thanks for sharing what you have shared - but enough already! You should do some reading and get yourself better-equipped for the discussion here.

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

I apologize and I wish you all the best of luck. Take care!

Name:

Sandy

Email:

Date:

19 Nov 2002

Comment

In my attempt to help I've learned another lesson. That's a good thing! The fact is I was able to cure myself. I've educated myself, like all of you. I wasn't on here to debate and I won't. The fact is I thought the information I've learned would be helpful. I even seen things that others have listed and they still don't see their own connections. I hope you all find your cure. Again the best of luck. Take care!

Name:

M1

Email:

Date:

19 Nov 2002

Comment

Sandy: The information you learned and shared will surely be helpful to some. But there has to be room for more than one school of thought on this site. Treating yeast has worked for some; treating HPV has worked for some; treating vulvar dermatosises has worked for some; the right antibiotics have worked for some (where's Jennifer?); interferon has worked (where's Leanne?); etc. These facts alone should show you that there is more than one route to recovery. It's good to question - but leave the doors open to other answers besides your own!

Name:

M1

Email:

Date:

19 Nov 2002

Comment

Sandy: The information you learned and shared will surely be helpful to some. But there has to be room for more than one school of thought on this site. Treating yeast has worked for some; treating HPV has worked for some; treating vulvar dermatosises has worked for some; the right antibiotics have worked for some (where's Jennifer?); interferon has worked (where's Leanne?); etc. These facts alone should show you that there is more than one route to recovery. It's good to question - but leave the doors open to other answers besides your own!

Name:

Frank B.

Email:

Date:

19 Nov 2002

Comment

To All: We are all under stress here. I think everyone is trying to be helpful and sometimes misinformation is posted. Someone may get relief somehow and in an effort to be helpful think their cure or treatment will help others. I think with the exception of the lunatics who post about viagra ads everyone here is well meaning. Please don't give up contributing, we may make mistakes but we do care!

Name:

Cassidy

Email:

Date:

19 Nov 2002

Comment

To Sandy: Please don't stop posting because of some indignant people. I am interested in what you have to share. If some people don't want to read what you have to say they can skip over your posting. If you can help just one person it is worth it. That person may be me!!!

Name:

Marisa

Email:

magongora@hotmail.com

Date:

20 Nov 2002

Comment

I think we all are frustrated and we're taking it out on each other. I believe we all understand that when someone is posting, they are speaking from their own experience, and not pushing their ideas/treatments/cures on everybody. Everybody shares what works for them. Is is confusing? Yes, because there are so many theories and approaches. At most, it gives us new information to think about and explore. I would hate to think that people would feel so unwelcome as to not post which would leave us without information that might help one of us. To add to the possible yeast connection, someone said that they tested negative for yeast in their cultures. I've been taking the homeopathic route and my homeopath has found that I have excess yeast in my system, that would not come out in traditional Western medicine tests. I have been taking homeopathic medicine for almost 6 months. I have also been on Noritriptyline (antidepressant, low dose that would not alter my mood in any way) for about 4-5 months. I'm doing better than before when it comes to having sex, a little less pain and burning than before. Which remedy helped me? I don't know for sure, but I don't feel I can discount the homeopathic approach because I have had success using this approach in treating allergies, preventing infection after a tooth being removed, and curing a bad case of strep throat. Just food for thought. Sorry for the long post.

Name:

Lynnze

Email:

Date:

20 Nov 2002

Comment

Sandy, Please don't stop writing!! I've learned so much from you an it makes me feel like theres hope when there really can be a cure. At first when I started reading these books I was so depressed because I hoght for sure there was no cure and I thought I was going to have to live with this for the rest of my life. I still might but I always like to have some hope to hang on too. As for the lady who gives no name I like reading your info too. But we all have to remember we are going thru the same pain and we are posting for info and maybe it can help someone. Frank, I think its wonderful how you are so supportive of your wife and you will always be in my prayers. Just don't give up ! My doctor tried to assure me I won't have to deal with this for the rest of my life, I'm just praying she's right. Too the ladies that have the pubic hair burning which I have, did you ever get tested for hpv and do you have it? I hoping that wouldn't be the cause of burning there. Just grasping at straws! Sandy you better write or I'll worry about you !

Name:

S.

Email:

Date:

20 Nov 2002

Comment

I think we need to remember that we're dealing with a very sensitive part of the body, but as focused as we are on our problems, there are other parts of the body that suffer from disease that are caused by many factors as well. Look at how many problems people can have with their backs, for example. We have a systemic condition, that's why it's so difficult to diagnose, because all of the tests that need to be conducted to pin-point the cause. It also is such a sensitve part of the body--effected by monthly hormonal changes (not to mention menstrual blood), sexual relations, daily urination, changes in mucus levels over the month, and suseptability to infection. If we all had a broken leg, an x-ray would show a fracture and it could be cured. The biggest obstacle I had encountered in diagnosing my condition is the head-scratching--or worse yet--apathetic attitude of the doctors I have seen. They won't listen to the long history or list of symptoms because they have three other patients waiting in the other examining rooms. I currently have HMO coverage which is fine if I want to follow the "here take this drug and tell me if it helps in a month" course of treatment. So far the only drug that has helped me is the Nizoral I requested. It didn't cure me though, but there may be an underlying hormone issue that needs to be addressed. I need to see a knowledgable doctor though--I hate feeling like I have to justify every treatment that I've read about in these guestbooks. I also need a few extra thousand dollars in my pocket, though! :-( The current medical system in this country needs a re-haul!

Name:

Emily

Email:

eroyce@smith.edu

Date:

20 Nov 2002

Comment

I guess it would be typical of my life if I do in fact have HPV that is causing by pubic hair to burn. I've been with one person for 4 years. He had one partner before me. I made him get tested before we did anything. He has been tested several times since. I've had 3 exams but a biopsy has to be done to detect HPV correct?

Name:

Lynnze

Email:

Date:

21 Nov 2002

Comment

Emily, They have a test that is just a swab off your cervic and they send it to a lab to test for hpv. Do you just have burning in your pubic hair ? Mine is on one side of my labia and then up to my clitoris and into my pubic hair. Somtimes my clitoris is sensitive and looks a little irritated. but it comes worse in th evening and by morning after i've slept I wake up and its gone. Do you have flare ups of it and how often? Are you on the birth control pill? I've read where lots of women notice this after they start the birth control pill. I went on the pill for two months got a bad yeast infection and then went down hill ever since. I wouldn't be have as bad if I could get rid of the burning in my pubic hair. Thanks for sharing this news!

Name:

M1

Email:

Date:

21 Nov 2002

Comment

RE: TESTING FOR HPV: There are some really important points here that people are not looking into. Brush up on your knowledge of HPV before you run for a test!! 1.) HPV is essentially a skin virus. It is passed from skin to skin contact. It generally settles in where the contact has been made. So if you are looking for HPV on your vulvar tissue or in your pubic hair - and what you do is have your Gyn. swab your cervix - you are wasting your time! All a negative result will mean is that you do not have HPV on your cervix! 2.) A pap smear test can be used for testing the outer tissue as well. Insist that you doctor do a normal cervical pap smear - then use a second pap smear test and brush (or swab) the external irritated areas. Ask the doc to send it off and ask for a "hybridinization test". (I did this and the cervical swab came back negative, the vulvar swab came back positive!) If there is HPV on the surface of your skin, or if there are any cells present that show changes due to HPV (cells that have been exposed to the virus have a little halo around the nuclei), they will show up. 3.) If nothing shows up, you could still have sub-clinical HPV present - you would need a biopsy for this because it would be deeper in the tissue - ask for the biopsy to be tested in the same way. 4.) If they find HPV at all what you need is called a Digene Hybrid Capture Test (you can find it using your search engine - look it up). The Digene tests for the two types that make warts (6 and 11), and about 17 types or so that are considered a higher risk for cervical cancer. The Digene is NOT the definitive "yes or no" to HPV test, it will just tell you if you have a type that is risky for cancer. A hybridinization is the test that will tell you whether you have been exposed to HPV or not, no matter what the type (there are over 70). 5.) Remember, even if you do all this and test positive - your doctor will probably say that HPV doesn't cause burning. And even if you don't agree - there is, unfortunately, really no way to get rid of the virus. I even did the interferon shots - it they didn't help in the least. HPV is an answer that we dig for, and if we find we have it, we really can't do anything about it anyway!! (Annoying, isn't it?) So, at this point - I'm really not sure what all this HPV stuff is worth. Lastly, did anyone see the news yesterday about the vaccine for HPV? 100% success so far - it will be available in a very few years. They said that it will probably go along with the other vaccines that kids get around the age of 12. Maybe too late for us - but it is nice to think that maybe our kids won't have to deal with this! One more thing - I found all this information on my own by researching on the internet. When I got it all together, I confirmed it all with 2 of my docs - just to be sure I understood all that I had read. If I can figure this out, anyone should be able to do the same . . . I worry that women are doing themselves a great disservice by coming here, asking questions and getting conflicting answers (not that the information isn't often helpful). You should take responsibility for researching your own information as well as reading this site.

Name:

M1

Email:

Date:

21 Nov 2002

Comment

I did want to say one more thing: I personally am starting to wonder if the problem is not the HPV itself - but if the presence of HPV allows other problems to happen. I wonder if, in some people, once they have been exposed to the virus, it allows things like yeast, bacteria, etc. to become a problem. I wonder if the problem is not the HPV itself, or if HPV acts as a catalyst, or if it knocks your immune system out of wack, or simply makes your skin oversensitive to things that are considered normal. I have no support for this, but it is something I think about . . .

Name:

Email:

Date:

21 Nov 2002

Comment

To M1: I agree with you 100%. I had a biopsy of my cervix and of my vulvar area and there is no question, I have HPV. However, I have been on diflucan 150 mg once a week for the past 5 months and have been pain free. I was absolutely thinking the same thing you are. My doctor told me that HPV weakens the tissue. So I am thinking I am more sensitive to yeast or maybe other bacteria. I think my problem is yeast. There is no doubt I have HPV, but the diflucan has helped. My doctor told me that the vaccine will kill the virus if you have it. It is not just for immunity. Right now there is no cure for HPV, you have to rely on your own immune system to destroy it. One way to give the immune system a kick in the pants is to take High doses of vitamin C around 500-1000 mg three times a day. Get the buffered vitamin C or your body will become too acidic. In addition to vitamin C take Zinc 20-30 mg of zinc per day. There are other vital vitamins, but these two are the most important to T-cells. I got this information from a very reputable doctor. Dr. Don Colbert. I have not started to do this yet, but will.

Name:

Karen

Email:

Date:

21 Nov 2002

Comment

To M1 and others... I agree with the theory that HPV might adversely affect the immune system, so that even tiny amounts of things like yeast or bacteria can create inflammation and pain, that your body would otherwise be able to control. Can't do anything about it except try to boost your immune system as much as possible. Hope they hurry up and get the vaccine available, and in the meantime continue with more research on HPV and what it can do.

Name:

Email:

Date:

21 Nov 2002

Comment

http://abcnews.go.com/sections/living/DailyNews/cervicalcancervaccine021120.htmlThe address above is the article about the HPV vaccine.

Name:

Frank B.

Email:

Date:

21 Nov 2002

Comment

To M1: I totally agree with verifying information . I myself once gave incorrect information here which I quickly corrected. Someone asked if there was a blood test for Fibromyalgia and my wife said there was, she was wrong but I did not check it before writing the post. I'm sure there are much more serious mistakes made and advice taken. You were also very smart to verify the information you found on the internet with your doctors, I'm sure not everything we read on the net is accurate either. Thanks for the thoroughness and effort.

Name:

Frank B.

Email:

Date:

21 Nov 2002

Comment

To M1: I totally agree with verifying information . I myself once gave incorrect information here which I quickly corrected. Someone asked if there was a blood test for Fibromyalgia and my wife said there was, she was wrong but I did not check it before writing the post. I'm sure there are much more serious mistakes made and advice taken. You were also very smart to verify the information you found on the internet with your doctors, I'm sure not everything we read on the net is accurate either. Thanks for the thoroughness and effort.

Name:

Lisa

Email:

Treatment that has been working for me

Date:

21 Nov 2002

Comment

Hi all, I have been on a regimen for over a month now that has stopped all spontaneous burning and pain. I still have discomfort with sexual intercourse and burning with urination. I have not tried tampons yet but we will see. I am absolutely thrilled to be feeling great on a day to day basis. I am taking 150 mg Effexor and 1 tablet of Vagifem inserted into the vagina once per week. Perhaps this or another similar regimen could work for someone else out there. I will continue to post my progress. By the way I have had vulvodynia for 10 years -- but it has been much worse for the past 1 1/2 years since being treated with major topical anti fungals (yeast meds) for 6-8 months. That treatment caused a great deal of burning and made me worse.

Name:

M1

Email:

Date:

21 Nov 2002

Comment

Susan (I think it was Susan) - a while ago you posted that your appointment with DR. LEGER had been moved to November 14th - how did it go?

Name:

Email:

Date:

21 Nov 2002

Comment

Cassidy, are you still reading posts?

Name:

Emily

Email:

eroyce@smith.edu

Date:

21 Nov 2002

Comment

Lynnze: I wish the burning was only in my pubic hair. I thought it started in the inside but that was just because sex hurt from the start and I never thought that the pain could be coming from the outside. Long story short: When I read the symptoms of vulvodynia is when I discovered that not only was sex not suppossed to be extremely painful but vaginas (all encompassing term at the time) were not suppossed to sting and burn all the time. Then I realized I had this since at least age 8. The pain likes to move around. Currently its on the lower right near the hymen. It's spreading so that my clitoris, which I suspected was over-sensitive, is now painful. Nothing is worse than the butt though. The estrace has changed my color, thickness, and pretty much stopped the itching in all other places except those listed above. I don't have flare-ups, it's just always bad. Maybe when I figure out the right treatment for me I'll be lucky enough to have flare-ups.

Name:

Emily

Email:

eroyce@smith.edu

Date:

21 Nov 2002

Comment

Lisa's post is so telling how different we are as women and how each body requires it's own treatment regimen, not to mention how frustrating it can be to see someone "cured" while you blindly fumble through all the information. I've been on effexor for clinical depression for almost 5 years now. It's been almost 6 months taking 300mg (up from 150mg.) And I've gotten up to 225mg of elavil, which doesn't seem like the magic number so far. Oh Lynnze: A little over 3 years ago I got on depo-provera. I was onl that for about 2 years. When I finally figured out that something was wrong with me, switching forms of birth control was the first thing they tried (after pressing the lube of course.) I was on mircette for a couple of months and got tired of being nauseous all the time. The only other form of birth control pills with a lower dose of estrogen was loestrin. I wasn't sick on it, but I also didn't know that I was contributing to my estrogen deficiency and progestrin overload. The only times I've been able to enjoy sex were those 2 separate weeks between each form of birth control. No one believed me that there was a connection. I've been off everything for about 3 months now, but it seems like I permanently f**ked my body with birth control (that they hand out to naive teenagers who think that are being safe by taking the most effective form of birth control only to find out that it wasn't even fully approved.) But I'm not bitter. ha ha

Name:

Frank B.

Email:

Date:

21 Nov 2002

Comment

http://www.msnbc.com/news/797744.asp?0cv=CB20To All: Please check out the above site. It should bring up an article called " A marriage strained by painful sex". The columnist includes some thoughts on why sex is painful but never once mentions Vulvodynia. I think it is important folks write to her and explain their thoughts on vulvodynia and pain. I just finished doing that myself. We need more publicity, more talk that might lead to research. Please consider sending your comments.sex@msnbc.com. is where your thoughts can be sent. Thank you.

Name:

Email:

Date:

22 Nov 2002

Comment

Sorry Sandy, I don't want to kick you when you are down, you have been posting incorrect information on Serotonin. Serotonin is a GOOD thing. Low levels of Serotonin can be the cause of depression, fibromyalgia, migraines, possibly heart disease and vulvodynia. Your serotonin levels don't RISE when you have a baby they DROP. I don't know where you are getting your information, but you should verify it before posting this incorrect information.

Name:

Sandy

Email:

Date:

22 Nov 2002

Comment

Cassidy, I just wanted to come back to the site and let you know that I'm very willing to help you out. Please give me your email address. To the person who hides behind their anonymous postings. I know you can't help your ignorance. Believe a bitter person like yourself will never get down. When I apologized before it was for your ignorance, not mine. You can try reading over again what I said about Serotonin, but somehow I don't think it will click. You've put your foot in your mouth. To put it in plain and simple terms so even you can understand, I'm cured and your not. So trash me all you like, somehow I think I'll get over it! Seems like some people like yourself love their own misery. I feel sorry for the people that come to this site for help and see postings such as yours that try to belittle people so you can boost your own ego. I was here to help with yes "documented" information. This should be a site for healing not bickering. You seem to have another agenda. I feel sorry for you.

Name:

M1

Email:

Date:

22 Nov 2002

Comment

Sandy - you need to learn some manners! That last post was really out of line and completely uncalled for! Cool it!

Name:

Cassidy

Email:

Date:

22 Nov 2002

Comment

Yes I am still reading posts. Sandy I would like to give you my e-mail, but I really don't want it posted on this site especially after reading some of the harsh things people have to say. I just don't trust some of the people contributing to this site. I would ask for yours, but I am sure you feel the same way. Correct me if I am wrong, but I have heard a lot of women say they felt better after they had a baby. I myself am one of them. I was totally pain free for 8 months following the birth of my daughter. The way I interpreted Sandy's posting was that too high serotonin levels could be the cause for the pain and inflammation. Therefore, it would make sense that the pain would subside following the birth of a child due to the drop in serotonin levels. Is this correct Sandy?

Name:

Sandy

Email:

Date:

23 Nov 2002

Comment

Cassidy, correct, you've made the connection in your situation. Great! There are other factors I will discuss with you later. I have a question for you. What time zone do you live in?

Name:

Email:

Date:

23 Nov 2002

Comment

Cassidy and others: I don't understand why you are listening to Sandy as an authority on rising serontonin levels after giving birth and other things. As I said earlier your serontonin levels DROP after giving birth. Please refer to the following website for the facts. WWW.nmha.org/inforctr/factsheets/postpartum.cfm. PLEASE, I am begging everyone in this guestbook to STOP listening to Sandy. She has no idea what she is talking about. Just refer to the above webite and you will realize that. She is nasty and angry. I have been reading this website for 2 years. It's been a nice place for people to share information until Sandy discovered it. She is obviously someone who likes to hear herself talk and always be right, when she is obviously wrong. She has some serious problems.

Name:

Email:

To Sandy

Date:

23 Nov 2002

Comment

On Nov. 19 you say serotonin levels rise after giving birth and then on Nov. 23 you said they drop after giving birth. Boy, you just make it up as you go along. By the way, this is the first time I have ever written in this guest book, but obviously a lot of other people feel the same way I do about your postings. I just don't understand what your motives could be. Maybe it's to feel important.

Name:

Sandy

Email:

Date:

23 Nov 2002

Comment

First not all women get V V after having a child so what is different. It is still of my OPINION, that Serotonin will rise with the introduction of amino acids (see Women's Bodies, Women's Wisdom, by Christine Northrup) which make Serotonin elevate and the lack of estrogen which causes the pain (due to oxallates in food) and swelling (due to Serotonin). It is of my opinion that yeast plays a large factor in this condition (which I feel causes an imbalance). So it is of my opinion after a women delivers a baby and starts to have signs of V V, it is of my opinion that the diet consumed that keeps the estrogen down by eating sugars, etc and the amino acids Serotonin up will bring on this problem or continue the problem after birth. It is of my opinion that if a women does have V V during her pregnancy and it is not an issue afterwards the Serotonin has lowered and her eating habits are not depleting estrogen and not inflating Serotonin levels. You can read more in Women's Bodies, Women Wisdom.

Name:

Katie

Email:

katie973@msn.com

Date:

23 Nov 2002

Comment

Yes, I have VVS and fibromyalgia. I have been seeing Dr. Hamod for about two months. He is in MD for the person asking where to go. I started PT with a therapist in the same building that specializes in womens health. I just started so I have not seen any improvement yet. Any advice?

Name:

Katie

Email:

Katie973@msn.com

Date:

23 Nov 2002

Comment

Can anyone keep my hopes up? I have had VVS for ten years. I started with the low oxalate diet which I did for two years with no success. Then I started with disipramine which did not work. I discovered lidocaine and basically numbed myself after this. I gave up on docs and recently decided to give it another try. I have been married for a year and a half and just want to be normal. It is frustrating to constantly have to use the lidocaine creme to keep intercourse from being torture. I found Dr. Kamal Hamod at Johns Hopkins and have been seeing him for two months. I have been taking amitrypitalin, calcium citrate, allegra, and using stearin-lenolin cream. He just had me start physical therapy with a therapist that specializes in womens health. I am trying to stay hopeful. I have only seen her twice. But nothing else seems to make the external pain any better. I am wondering what the connection is b/w VVS and fibromyalgia, which I was also recently diagnosed with. I also think there is a connection with panic/anxiety attacks and VVS. I developed VVS shortly after I started having anxiety attacks. I am hoping that PT helps. I was a ballet dancer and now currently teach and it would make sense that my pelvic muscles were unstable. I overuse my external muscles and it was interesting that the PT found I had knots in that muscle. She also diagnosed me with levator ani syndrome. I am sure it is all connected. Is there anyone else with all of these problems? Sometimes I feel like I am falling apart and I am only 29. Please feel free to email me. I would love advice

Name:

Ines

Email:

Date:

24 Nov 2002

Comment

<a href="http://www.dolleseiten.de">Homepage</a>

Name:

Emily

Email:

eroyce@smith.edu

Date:

24 Nov 2002

Comment

This back and forth bickering needs to stop now. It's okay to be annoyed with someone or to disagree with their advice and insight, but I cannot understand lashing out when you don't even need to be reading the posts. You may think you are saving others from "going down the wrong path," but someone may find relief with the steps Sandy took, and someone else might find relief with the steps you took. I don't know who to address this to since the writer remains anonymous, which is problematic in itself. I may have been annoyed with Sandy and her 10 posts a day, offended that she addresses all others except me because I'm an exception to the rule (evidence that there is no one right treatment), lost in the wealth of information so much that it paralyzed me, and baffled at the amount of time one must have in order to do that much research and self-discovery. But that doesn't mean that I don't admire her ambition to get well, her good intentions to help others, and her insightful posts that made me want to do some investigating of my own. These guestbooks are set up to share information and you should take what you want and leave the rest. There is so much conflicting information surrounding vulvodynia that you both probably have studies and experiments etc. to back your opinions up. You just have to trust that the rest of us reading the posts will care enough about our bodies to investigate for ourselves and act according to what we find to be true for us.Let's get back to sharing information on vulvodynia, not trading insults for insults. Let's debate causes and effects, not personalities.Has anyone experienced a change in color and thickness etc. after a month or so applying extrace? What does it mean that my clitoris is slowly separating itself from the foreskin after being that way for as long as I can remember (again due to the estrace)? How come my butt isn't getting better? Does it have to do with the constant sitting students are subjected to? What is the highest dose of elavil any of you ladies have been on? Did any of you use neurontin in combination with the elavil (and effexor)?

Name:

Frank B.

Email:

Date:

24 Nov 2002

Comment

To Emily: Thanks for trying to make it peaceful around here. Now for the personal stuff. My wife for one used the Estrace for months and it did nothing for her tearing or thinning and tearing problem. I think this just makes the case that for some Estrogen is not the problem. Regarding the clitoral adhesion problem while surfing the net I came across several references to this condition. Most of them suggest this is caused in part by natural skin secretions which build up and cause the adhesion. See if you can search this yourself, I think they suggested extra efforts to clean around the clitoris and free it up. I know unless my wife uses a mirror and flashlight she can't see what is going on in that area. I don't mean to personalize this but if my wife is typical of many women she does not make any vigoris effort to clean around her clitoris, I don't think she even wants to touch it. Years and years of being told sex if dirty has definately damaged her sense of pride and wonder regarding her body and sex. Sorry to get off the subject.

Name:

Emily

Email:

eroyce@smith.edu

Date:

25 Nov 2002

Comment

Frank: The build-up is called smegna, just as it is with guys. After hearing the term clitoral foreskin adhesion I decided to investigate myself. I also asked a gynocologist to look and she said I didn't have it. It's just that since using the estrace it has slowly made more and more of an appearance. Parents are really supposed to begin pulling back the hood and thoroughly cleaning around the clitoris at infancy but I'm positive my parents did no such thing. When I discovered I had a clitoris in the seventh grade I believe it looked as it does now, so I never thought that maybe mine was different in any way. I was just wondering if anyone knew why it was that estrogen could cause the adhered skin to detach. There are theories that state that the adhesion can be painful and cause over-sensitivity to touch. There are others that state it is harder for women with adhesion to orgasm. From the information I've looked at the effects vary from one woman to the next and the only way to see if you have the adhesion, and if so what its effects are, is by experimenting. I can't imagine trying to treat vulvodynia when you are unfamiliar with your own vulvar area. I too was raised to think that anything of a sexual genre other than marital sex was a sin, but I burn way too bad to sit on the sidelines subjecting myself to one doctor's perogative or another.

Name:

Frank B.

Email:

Date:

25 Nov 2002

Comment

To Emily: It's interesting that you believe the Estrace has caused or helped the adhesions to lessen. Maybe the application of the Estrace is disturbing the area enough to have some imapct. To any of you ladies who are using other steroid based medicines there other things to consider. Years before my wife had problems of tearing we saw an episode of Oprah, she had a guest Christine Ferrare who talked of female libido. She even wrote a book in which her gyno suggested she apply a small amount of a testosterone based ointment to the clitoris to aid in stimulation. I'm not mentioning this because of the sexual nature of the hormones but rather the their impact on your body. When you alter your hormone balance with either estrogen or testosterone which men and women have, there are side effects. My wifes' gyno said using the testosterone cream could cause hair growth and an enlarged clitoris. She tried it for a week or so but it did nothing to either enhance her libido or her clitoral size. This is such a very complicated matter. When my wife saw the endocrinologist I picked his brain regarding hormones and her symptoms. I had read of saliva tests for hormone levels on the internet and he thoroughly dismissed them and said only blood work and cell samples were accurate. Is this true? I'm trying to play a balancing act at home between my sexual desire and feelings and some kind of clinical interest to observe my wifes body and understand what is happening. You who are suffering reach a point where the exteme intimacy of this illness is outweighed by your pain so you seek out help. The millions of women who do not share that pain might be supportive if our society did not have such hang ups regarding genitalia. We watch more and more sexually explicit programming on T.V. but rarely will you hear the words vagina or clitoris used. Well I got way off the subject again, sorry!

Name:

laura

Email:

lara.schecter@adeccona.com

Date:

25 Nov 2002

Comment

Hi all, I am emailing because I feel some of you may be able to offer me advice. About 2 years ago I had a UTI due to intercourse and was given antibiotics, it went away and then about 2 weeks after my symptoms of urinary urgency came back and never went away for 9 mths. I was tested for Ic, bladder scans, you name it, all negative, I tool elavil and biofeedback with dr. glazer and then one day jsut went awy for about 2 years ago. It started again 2 months ago when I started having regular intercourse. I do not have pain, just constant urinary urgency that is worse after intercourse and does not go away. all my cultures have been negative. I have been to Dr. Ledger who gave me nopramin and the gene test and started the biofeedback again. I have not had intercourse in several week as I am afraid this will just aggravate it, have been to a urologist at nyu, noone seems to know exactly what is going on, if any of you have any advice. Please let me know, this is extremely upsetting. I appreciate it

Name:

S.

Email:

Date:

25 Nov 2002

Comment

Well, if I could just take a moment to post a few positive things, I would like to say the book Sandy has recommended is right up my alley and totally confirms many of the suspicions I've had regarding women's health and the crappy deal we're getting with the way the medical system is run these days. If any of you would like to read it, once again it's called "What Your Doctor May Not Tell You About Pre-Menopause". I love reading a book that acknowledges the problems in our society and suggests alternative methods of correcting the imbalances in our systems. Frank--the saliva test for hormone imbalances is recommended in this book. They explain why the blood tests may not show everything. I'm prepared to be met with the same resistance when I visit my new Gyn next week. Seems like any test from a lab other than the regular local labs is poo-pooed. I state with absolute certainty that in my case, The Great Smokies Lab discovered a Candida Albicans level of 4+ in my stool test. That's the highest level in their tests. I had to pay for this test out-of-pocket but it confirmed my suspicions about yeast. They also offer a saliva test for hormones, that's why I brought this up.I would also like to say my period was so back to almost normal this time--I really think I may be heading down the road to recovery without the help of prescription anti-fungals this time. For one thing--it wasn't early. My breast didn't hurt prior to the fact. I had a normal flow--not too heavy and definitely not the sparce kind of blood I've experienced many months with this condition. I didn't have too much cramping. My vulva looks much less red than the past few months now that it's clearing up (post-menstrual days have *always* been the worst for me). I attribute all of this to exercising for the past couple of months and cutting complex carbs and sugars out of my diet--I've also lost 16 pounds in the process (weight I gained over the past six months due to increasing sugar intake and eating a lot of "forbidden foods" when you're on the anti-candida diet). I'm looking heathier and I'm feeling less tired. Sandy also recommended cutting out the B-complex vitamins so I stopped taking mine and stuck to my multivitamin and my daily vitamin C. I thought I would try this because I haven't been experiencing my weird nervous rushes through my body that I began to feel in mid-Sept. I noticed a sharp decrease in those as soon as I started on my anti-candida diet again. If anyone should wonder, I have never experience the profuse, smelly, cottage cheese-like discharge that I have read many women experience with a yeast infection but I still suspect intestinal yeast has some effect on my well being. If anything, I *dried up* after I used that antibiotic two and a half years ago. Before that time, I was vaginal-infection free my entire life, with never a pain or itch in my reproductive area (with the exception of menstrual cramps lasting one day every cycle before I had children).

Name:

S.

Email:

Date:

25 Nov 2002

Comment

Sorry--forgot to add my husband and I had two nights of pain-free intercourse prior to my period (when my vulva finally stopped that horrid burning feeling I began to experience in Mid-Sept.) with no ill side effects afterwards and I also haven't had a itching feeling in my anal area for I would say at least three weeks now. I also began to use Vitamin E oil on my vulva when I read that Sandy had good results with it. I'm not using the capsules, though, because every single one at my health food store contained Soybean oil, and I'm trying to avoid Soy. So for now, I'm feeling pretty positive about things.

Name:

S.

Email:

Date:

25 Nov 2002

Comment

Darn-I also wanted to add I've been making my own yogurt now for about a month and a half, after reading another extremely informative book--"Breaking the Vicious Cycle". I wanted to give yogurt a try because I have read that yogurt actually has a better healing effect on stomach ulcers than just using a probiotic on it's own. I have been using pro-biotics for nearly the whole time I have been dealing with vulvodynia. I am really enjoying making my own yogurt and I use organic half-and-half which results in a nice creamy texture. I also wanted to say I began to take a more natural approach in my toothpaste, hair mousse, and now my deodorant.

Name:

Sarah

Email:

sarah@finnerty7.freeserve.co.uk

Date:

26 Nov 2002

Comment

I too thought I was wierd til I read this. I believe I may suffer the same condition. For years I have had trouble after sex/frequent use of tampons. I have stinging and burning in the perineal area. This seemed worse when taking the combined pill and during pregancy and breastfeeding. Doctors have never had any answers other than to say the skin seems tissue like and prone to tiny tears.Coincidentally after my first baby I had a lot of stitches to repair an episiotomy which healed into a 'bridge' of extra skin thus forming a U not a V and making the entrance to my vagina smaller and even more proine to soreness and tiny tears. After tearing during the delivery of my second baby the problem repeated itself. I am now due to have a 'Fentons procedure' in just over a week (apparently they cut down the bridge of scar tissue and restitch horizontally.)Has anyone similar experiances or comment re this op

Name:

Frank B.

Email:

Date:

26 Nov 2002

Comment

To Sarah: If you have read past guestbooks then you know what I'm about to say, to those who are familiar with our story just ignore this. My with has had three children and episiotomies. The last one was nine years ago and she had no pain or problems with sex until two years ago. She started to get a small paper cut like tear at the six o'clock position right where the episiotomy scar would be. She had no problems for seven years so why would it be the scar all of a sudden. Well her gyno suggested surgery, he would repair a rectocel which is a bulging of the intestine into the vagina, repair some muscle damaged from all the prior deliveries and form a new scar. He did the surgery said all went well and sent her home. We abstained for six weeks while she used Estrace. When we attempted to resume we used plenty of lubricant and as always take things slow. She immediately tore, same place! Maybe you have a problem with the episiotomy scar that can be resolved but if it is this mystery thinning of the skin the surgery won't help. You know the down side, the pain of another episiotomy and the healing process. Best of luck with your decision and recovery if you opt for the procedure.

Name:

Emily

Email:

eroyce@smith.edu

Date:

26 Nov 2002

Comment

I'm 19 and considering a hysterectomy. I could wait for the day when they create a form of birth control that I could take but what do I do in the meantime? Yes sex hurts but I kind-of want to try anyway. My pain is at its worst, but now it's more of a constant thing and less on contact. The two weeks where I got to enjoy sex were when I was not on a form of birth control. Has anyone heard anything about the vaginal ring working for women with vulvodynia? That way I could get estrogen without the nausea that comes with taking birth control pills with estrogen. And I have looked for information on hysterectomies, but haven't found any answers yet. Would it mess up my hormones just as much as birth control, which in that case would be pointless? I'm not worried about not being able to have kids. If I ever find relief there's no way I'm going to mess with it by squeezing a baby out. Sorry if that's offensive, I just can't understand it. I am worried about feeling like even less of a woman but between that and knowing that I could never have sex again without taking a major risk, I think I could handle it. Why are we, as vulvodynia sufferers, not taking advantage of all the children who are in foster homes waiting for loving parents? Your vagina is trying to tell you something! Sorry, I'm done with my schtick.

Name:

Frank B.

Email:

Date:

26 Nov 2002

Comment

To Emily: Sounds like you are in a lot of pain and disgusted. Please put off anything radical like you mentioned. I hated using condoms and there were times when I would rather not have sex than use them, but I loved my wife who was my girl friend at the time to say with her regardless of the condoms or sex. I don't know where your heads at but who knows three or four years from now you might meet a great guy and the two of you just click. Three or four years from now there might be some great advances made in both vulvodynia and birth control. All I'm saying is try and stay strong and put off life altering procedures. I had a vasectomy two years ago and I'm almost fifty now, it didn't make me less virile. If I thought birth control pills did this to my wife I would gladly have had a vasectomy many years ago. First I would have my sperm frozen so that we could have children together. Your thoughts on adoption are very noble but adoptions is not for everyone. Back to the birth control thing if a guy really wants to be intimate with you and the only condition you have is that he use a condom , hey it's your body and you have to do what is right for you! Best of luck with this tough illness.

Name:

S.

Email:

Date:

27 Nov 2002

Comment

Emily-You're in a lot of pain and are very frustrated, but don't consider an operation that will only contribute to your problems. I will quote from "What your doctor may not tell you about menopause": "Some sixty percent of women who reach age sixty-five will have a hysterectomy. For a small percentage of them it will relieve chronic pelvic pain and increase sexual pleasure. But for most women a hysterectomy results in reduced sexual pleasure, and it often doesn't cure pelvic pain. A hysterectomy in a premenopausal women will result in abrupt menopause and atrophy of the ovaries. It will increase her risk of heart diesase and osteoporosis and will greatly increase her chances of having bladder problems such as incontinence and chronic urinary tract infections." Also, " a hysterectomy significantly comprimises blood flow to the ovaries, so their ability to produce progesterone is quite quickly reduced, and within two years estrogen production falls to post-menopausal levels." Given your young age, if you could find a hack obgyn willing to perform a hysterectomy, you would almost certainly be put on HRT, so you would be back to taking the Pill that you so hate. I have two uterine fibroids and I'm done with having children (tubal ligation) and I wouldn't ever consider having a hysterectomy unless I was diagnosed with cancer! Plus, don't dismiss condoms as a form of birth control. My husband and I found them to be extremely effective for ten years and I was as fertile as they come (one try for each child!).

Name:

M1

Email:

Date:

27 Nov 2002

Comment

Emily: You should be using condoms whether you are on the pill or not!! Haven't you heard enough women and their problems here?? There are things in the world worse than what we suffer from - like AIDS!! If your guy doesn't want to use a condom tell him to hit the road. In addition about hysterectomy: when you remove your uterus - everything else in there shifts - there is something major missing that used to support your intestines. Chronic constipation and pelvic pain is very common after that operation. Hysterectomy is one of the most over-performed womens' surgeries on the books!! Don't give up yet Emily - you can get through this!!!

Name:

Emily

Email:

eroyce@smith.edu

Date:

27 Nov 2002

Comment

I don't know why everyone assumed I haven't used condoms. There were more times I did not, than times when I did, but that was because I have only been with my boyfriend of 4 years. While on birth control, every nurse or gynocologist I talked to said that I did not have to wear condoms in addition to depo-provera or birth control pills because those were sufficient enough to prevent pregnancy and the condoms would only be a measure to take to prevent contracting STIs. Obviously if I had a new partner I would have him get tested and still would probably use condoms since HPV is really hard to detect. I do not feel comfortable only using condoms and spermicide as protection against pregnancy. Condoms are supposed to be around 90% effective in preventing pregnancy, but with human error taken into account they are only about 70% effective. It is a lot easier to use a condom incorrectly than it is with a shot or a pill. I also think I am irritated by latex, although that could just be because sex hurts no matter what. Polyurethane condoms are even less effective than latex ones. I don't think spermicide is good for a vulvodynia sufferer either, and it leaks out so that you can't have oral sex.Thank you S. That was the information I was looking for. It doesn't sound like a hysterectomy would help anything, and that it probably would make things worse. Back to the drawing board.

Name:

DD

Email:

Date:

27 Nov 2002

Comment

For S:I found your comment on hysterectomy interesting, I was wondering, why do you believe that it leadsto atrophy of the ovaries???. I have never heard of this before.

Name:

S.

Email:

Date:

27 Nov 2002

Comment

I had a hysterectomy when I was 40 due to fibroids. My vulvar symptoms started years before my hysterectomy though and the surgery didn't affect my pain one way or the other. I'm glad that I kept my ovaries so I didn't go into instant menopause.

Name:

carla

Email:

cbwhite01@yahoo.com

Date:

29 Nov 2002

Comment

PLEASE, anyone, looking for a doctor who can treat me, constant vestibular pain. I live in Los Angeles.God Bless You for writing back to me.

Name:

Email:

Date:

29 Nov 2002

Comment

My hysterectomy was the best thing I ever did.

Name:

Email:

Date:

29 Nov 2002

Comment

To the Last Post: Please give some details regarding your comments. The person considering this procedure is very young and will have to live with the results for the rest of her life. We need more of an answer. thank you.

Name:

Email:

Date:

29 Nov 2002

Comment

Emily:To each his own, but "taking in foster children" is not the only option for vulvodynia sufferers who want children. If you are afaid that "squeezing out a child" will somehow affect your condition, you may want to consider a c-section if and when the time comes. It's another option to consider. A think a hysterectomy is rather extreme, and may only worsen the problem. Good luck to you.

Name:

Elaine

Email:

irish@canucks.com

Date:

29 Nov 2002

Comment

SANDY:I have been reading your story and your advice and it makes so much sense to me.Quick background...I never had a yeast, bladder or any kind of infection in my life. I was married a year and got a very bad flu (almost pnuemonia) and the doctor put me on antibiotics. My vulvodynia started there. Unrelenting pain, burning and terrible dryness (no discharge whatsoever). This was 12 years ago...I was given every treatment under the sun (especially steroids which I feel have permanently thinned and damaged my skin). Then I got ovarian cancer...BAD! So bad that the tumors were growing at an alarming rate. My oncologist feels the steroids may have contributed. I had to have a radical hysterectomy (ovaries, uterus, cervix, everything) or risk death. Now I am on HRT and my doses have been upped until I can go no further and still I have absolutely no moisture at all. I never had bladder problems ever before...but now due to lack of hormones it is a daily occurence. I also feel I have a yeast imabalance even though the doctors say i don't have discharge that suggests it. I used to excercise religiously but now find it unbearable (it is painful to do and dries me out so badly my vulvar skin bleeds). I used estrace cream without alcohol and aloe vera gel...but it lasts maybe 5 minutes at best. The high doses of hormones and lack of excercise are causing me to put on weight...lowering my self esteem even further (forget that I haven't even come close to having sex with my husband in 8 years...I hemmoraghed the last time we tried from the thinness and dryness of my skin). I don't know if I can ever get my hormones back in check after having a complete hysterectomy and being on high doses of estrogen with no relief. Could you please, please email me as I feel you had a lot in common with my situation and I value your opinion. Thanks so much...and blessings to all with this horrible comdition.

Name:

Emily

Email:

eroyce@smith.edu

Date:

29 Nov 2002

Comment

So I touch myself everyday to see if there is a difference in pain and lately it doesn't really hurt on the outside where it always has. The lower right under the hymen is still where the pain is originating from, but it's more itchy than tender. Inside is what really hurts, but our condition isn't supposed to involve the inside so now I'm confused. Is this an indicator that my pelvic floor muscles are really at the root of my problem? Two fingers have always hurt, except those two weeks I got to enjoy sex, but this seems much worse. Even my g-spot, supposedly a source of pleasure, hurts like hell and definitely doesn't want to be bothered with. I could get a very small dildo and try to massage things out on my own, instead of having a physical therapist finger me and then charge me and send me off with more pain than I went in with. I know it's like when you have a knot in your back and have to work it out eventhough you don't want to because it hurts so bad. So if anyone can relate to this or knows more than I do about it please respond.

Name:

Emily

Email:

eroyce@smith.edu

Date:

30 Nov 2002

Comment

I forgot something important. The moment to moment stinging is still the worst it has ever been so that sitting in class all day and then infront of my computer is not too fun. But anyways, I just find it peculiar considering that it doesn't hurt to the touch. Where is the stinging coming from?

Name:

LYNN

Email:

Date:

30 Nov 2002

Comment

HI, THIS MESSAGE IS FOR CARLA THAT POSTED ON 11/29/02. I'M NOT FAMILIAR WITH LA, BUT I KNOW THE BERMANS (JENNIFER AND LAURA BERMAN) WORKS AT THE UCLA MEDICAL CENTER FOR WOMEN'S HEALTH IN LA. THEY TREAT VULVODYNIA/ VESTIBULITIS PATIENTS. I DON'T HAVE A # OR LOCATION OR ANYTHING BECAUSE I LIVE IN AZ. BUT YOU PROBABLY CAN GET THE # FROM THE PHONE BOOK. GOOD LUCK.

Name:

Tara

Email:

xcutiexk@aol.com

Date:

30 Nov 2002

Comment

Hi, my name is tara, im 22, recently ive been diagnosed with vestibulitis. I have burning feelings all the time. I cant have sex and its ruining my life. My doctor says the only thing to help is an anti-depressent called elevil. Is there anybody out there to talk to me about this or help me. Im a nervous reck!! If u want to talk please IM me or email me at xcutiexk@aol.com. Thanks :(

Name:

tara

Email:

xcutiexk@aol.com

Date:

30 Nov 2002

Comment

i have burning on the inside of my vagina, not the outside!!! Im new to this, i had this for almost a year. I just got diagnosed. It burns to wear a tampon, it burns to have sex, and when i go to the gyno it burns...I even have the burning when im not doing anything. If anyone is out there that can help me...please contact me, thank you :) The only thing i started taking was elevil. Is there anything else to help?

Name:

thanne

Email:

thanne@river.org

Date:

30 Nov 2002

Comment

The vulvodynia survey is interesting, but it is in dire need of a proofreader. There are some spelling errors/typos and some strange font changes. Also, it would be interesting to see some statistics collected as a result of this survey.

Name:

rachel

Email:

rknap77@aol.com

Date:

01 Dec 2002

Comment

Hi, I think this is a great site with lots of info and people with interesting info. I have a long story that im sure is much like alot of poeple up here, but i need to go to bed so ill save it for another day. i saw a posting that i found very interesting where a woman says that she was cured by iv antibiotics. First of all, let me say i think this problem can be caused by many different things and is related to ones genetic makeup. The reason i find the antibiotics thing so interesting is b/c i personally feel that there is some kind of infection going on with me. I have been tested for everything, but according to docs there is nothing there. I got this from having unprotected sex with someone, and that is something that i dont read in most postings. I got a bad infection which they treated unsuccesfully over and over again. Eventually so much time passed noone would believe that there was still an infection. But it still felt like an infection. Years have passed and the only time that this got better, i mean i felt completely normal was when i was on a 3 month round of mepron and zithromax, which is supposed to kill protazoans. Unfortunatly it was back when i stopped the medication. If this isnt an infection i cant see why it gets better with medecine like that, while nothing else helps. It feels like i have something from my vagina all the way up into my stomach, but none of my doctors have been interested enough or willing to try to figure it out. I doubt that this will ever go away w/o some kind of treatment for an infection. I would love to find a doctor who would do an iv of high dose antibiotics, but that isnt likely b/c they cant culture any bacteria. I do think that for some people this is the problem and that it can be solved with proper medecine. the only thing that improves my symptoms have been antibiotics. At the same time i get yeast infections from the antibiotics and im not sure i would even bother at this point unless it was a really high, knock em out kind of dose. well i just thing the infection angle is interesting and something for some of us to think about.

Name:

tara

Email:

xcutiexk@aol.com

Date:

01 Dec 2002

Comment

besides the vestibulitis, i have a hair growth problem. I get hair in the strangest places!! But all my blood tests came back normal. I am also on birth control called yashmine...its suppose to slow down the hair growth,,,i hope it works!! Im starting to get rectal burning...what can go wrong next...i had it for over a month and it wont go away...i thought maybe the yeast infection i had spread to my rectum..or maybe the vestibulitis is spreading to my rectum,,,im getting burning everywhere. And when ever something is wrong with me, i always have something that the doctor never knows what it is.. Im petrified to have sex,,,im so scared!!! the burning is so intense, is there anything to help the burning???

Name:

Frank B.

Email:

Date:

01 Dec 2002

Comment

To Rachel: Welcome to the site. Don't be upset but some men do read and post here, I'm here because my wife has vulvodynia but thinks nothing can be done. She may be right but if we don't exchange information how will any progress be made? Any way as a guy who has had lots of surgery for stomach problems and as a concerned husband and father I've read plenty of articles on anti biotics and probiotics. People from all backgrounds post here so please don't be offended if you already know what I'm about to say. It seems that antibiotics kill off good bacteria along with the bad. Doctors who prescribe these long term dosages don't seem to offer anything to correct the damage these drugs do to the fine balance of friendly bacteria in the intestines and vagina. Some women here take probiotics to build back their good bacterias. I've even read of women using yogurt or acidophilus tablets vaginally for pain relief, but I don't know if that's a good idea. I just wanted to mention the probiotics. The expert we saw in CT said most sufferers he has seen have a history of U.T.I and yeast infections and an assortment of other symptoms. I have read of very young girls having symptoms and also elderly women suffering who did not have problems earlier in their lives. If you get a chance read some of the past guestbooks they are a good source of information. Best of luck.

Name:

SHARON HENDERSON

Email:

HENDERSONSHARONA@AOL.COM

Date:

01 Dec 2002

Comment

I SUFFERED WITH INTERSITIAL CYSTITISFOR AROUND 25 YEARS. THEN IN 1990 I GOT A UROSTOMY AND IT HAS PRETTY MUCH TAKEN CARE OF THE I.C.THEN IN 1994 THE TERRIABLE BURNING,STINGING, RAW FEELINGS STARTED. I GO TO A PAIN CLINIC ONCE A MONTH FOR IT AND I'M ON METHDONE 2 THREE TIMES A DAY. IT HAS TAKEN CARE OF A LOT

Name:

rachel

Email:

rknap77@aol.com

Date:

02 Dec 2002

Comment

Hi, To Frank, I have no problems with postings from a man as well as advice. i am comfortable with my body which alot of doctors find hard to believe and try to convince me that i dont know my own body or that i have a problem with my vagina which according to them looks just fine. I spent alot of time reading over postings, but there is alot to read and i havent even gotten a small way through. I saw some old ones from a jennifer and i agree with what she says. I swear that I have an infection that is not being diagnosed and possibly is not known about. I dont understand how else u could catch this from having sex. I also feel better when im on antibiotics. I do agree that it causes an imbalance and yeast and other problems, but they r completely different problems from the way my vagina normally feels, and it feels like it has an infection. I do take pro-biotic acidopholous when im on antibiotics and when i am not. I hate the approach that the medical community takes toward this b/c they r just treating symptoms and if one believes like i do, that there is an infection behind it, treating the symptoms is pointless b/c there will still be an infection there. I have to add that I have also been diagnosed with lyme disease and babesiosis and that is why i have had long term antibiotic treatment. It makes me really mad that doctors are not willing to be more creative and try treating this as an infection b/c they r so afraid to put u on antibiotics. But at this point what could it really hurt and it might make things better. It is extremely important for me to be able to have sex and enjoy it, so i wish they would just try treating me with something. Like i said before when i was on mepron and zithromax i felt like i had an almost completely normal vagina, but they would never be willing to put me on that again, based on the fact that i felt better. they have to have a test that says we see this bacteria. I really do think that its possible they have the ability to treat this and cure it, but they cant experiment with the medicine that is available. After I had unprotected sex nothing was the same. I had vaginal pain and irritation and discharge. This spread to my pelvis and stomach. i started having crazy, painful and heavy periods, stomach pain and nausea. My stomach felt like it was burning all the time and i would have sharp pains where it feels like my ovaries would be. I cannot believe that this doesnt appear to be an infection. Alot of this subsided after antibiotic treatment, but i still have dryness, burning and weird discharge. I have not been offered alot of the treatments that i read about b/c my current gyn isnt sure what the problem is, so she just put me on the pill. She gave me some diflucan which maybe made a tiny difference. i was on zoloft for 3 years and that didnt do anything.Sitting in a bath of epson salts or baking soda makes me feel better b/c i think i am irriated by my own discharge. So Im going to make an appointment and im not sure what im going to ask her for. i really would like an endoscopy?????, whatever it is where they look inside b/c i am sure that i have scar tissue, but then i guess they will just label it endometriosis. Well, I am kind of rambling, but I have such a long complicated story i dont even know where to go with it. I get very upset when i start thinking about this. I know i have it better then alot of suffering women b/c i dont feel pain all the time mostly just from sex, before/after. But it makes me furious, that u can go to doctor after doctor and they dont take u seriously just b/c they dont know what it is. All that i can think about is that if this were happening to men the world would stop until they figured it out. Thanx for listening to me vent and letting me get out a little bit of what i have to say. i do appreciate it and would love to receive email from anyone about their situation. thanx : )

Name:

Frank B.

Email:

Date:

02 Dec 2002

Comment

To Rachel: My wife had a procedure where the gyn looks inside with a kind of microscope I think it's called a Colposcopy. Dealing with doctors is very frustrating for us and for them. They are dealing with this incurable illness and after they run out of tests and medicines you become an annoyance like some kind of failure to them. I have been posting since guestbook thirteen and Jennifer is one of the brilliant people. It is hard to deny that there may be several different illnesses at work here. Some women are very certain their sympotms started after a course of antibiotics. others believe it was a birth control product that sparked the pain, there are many women who feel their problems began with a new lover. Then there is the theory of hormones and genetics, maybe everyone is right! I hate to critisize doctors but some times they are in such a pattern of practicing medicine that they are not open to new ideas. I had a stomach doctor who yelled at me when I mentioned Helicobactorpylori as a possible cause of my stomach pain. This was three years before the theory of this bacteria causing stomach pain was accepted. Sure enough a couple of years after he dismissed my questions he too was scoping for this bad bacteria. Hopefully there is a research scientist somewhere who is working on these symptoms. The pain, burining, itching, discharge and thinning skin will someday be a thing of the past. In the mean time maybe you can approach a different type of doctor, such as a immune specialist. Maybe that doctor would prescribe the course of treatment you want. Best of luck and definately read some of those past guestbooks.

Name:

S1.

Email:

Date:

02 Dec 2002

Comment

Hi Emily,I'm going to post under "S1" now because someone else is posting under "S." as well. I'm the "S" who took Keflex two and a half years ago and am still suffering from vulvodynia. I wrote to you about the negative aspects of a hysterectomy. I wanted you to know I quoted from "What your doctor may not tell you about pre-menopause" regarding the atrophy of the ovaries. I believe it's because of the reduced blood flow to the ovaries when your uterus is removed, but I could be wrong. Elaine--your story is heart-breaking. I hope you are able to find a health care provider who can treat you with the kindness and gentleness that you deserve.

Name:

Amber

Email:

ambermalek@sympatico.ca

Date:

02 Dec 2002

Comment

Hi, this is my first time writting. I am 31 years old. I was diagnosed with Lichen Sclerosis about 7 years ago. I've had it longer than that though. When I was 17 I got cervical HPV and had it removed by laser. A few years later I became itchy and would wake myself up in the middle of the night scratching. Then around 8 years ago while having sex I felt this excruciating pain and when I looked I saw that my skin had torn at the 6 o'clock position. After that I've never been able to have sex comfortably again. I tore every time. I was diagnosed with LS and had surgery to remove some of the tissue. This helped immensely, for a while. I don't have sex anymore. Now I am always itchy. Everything looks normal but the itchiness is unbearable so I start to rub (I try not to scratch because this does tear my skin) then the skin becomes red and inflammed. Up until a year ago I would depend on doctors (both conventional and holistic) to figure out what was causing this problem and what could be done about it. No one to date has helped so I've decided to help myself. SANDY-I believe that you are on the right track with the Estrogen theory. I had a hormonal saliva test done 2 years ago and found out that I am estrogen deficient. No one addressed this issue though. So I wonder, have my estrogen levels been dropping even more ever since? I've just started using a natural vaginal estrogen cream and have noticed a slight improvement. By the way, I am studying to be a holistic nutritionist and have learned a lot already. First of all, blood tests are not accurate to find out hormone levels. The saliva test is the best for that. Secondly, I truly believe that food allergies play a large part in this disorder. Unfortunately, the skin prick test is only about 15% accurate in detecting food allergies. The best test is the ELISA blood test. I have sent away for it and am looking forward to getting some answers. When a person has food allergies it messes up many parts of the body. An allergy is an immune response. The immune system sees the allergen and fights it off. If you continue to eat that allergen the body is constantly fighting it and it can't fight other things which can then weaken your body in one way or another. With LS/vulvodynia I truly believe that yeast is a huge factor and when a person has many food allergies it is the perfect senario for yeast to thrive. When there is excess yeast, there tend to be more allergies. It's a vicious cycle. So my theory is that the food allergens need to be discovered then eliminated while treating the yeast overgrowth by diet and probiotics. Mind you this is just a theory right now but it makes sense based on what I have learned so far. In regards to the low estrogen, I have read repeatedly that low estrogen thins the vaginal wall allowing yeast to take over. If anyone is interested in reading about food allergies the best book I have found so far is Allergies, Disease in Disguise by Carolee Bateson-Koch. I'm not writting to convince you of my theory, I won't know if it's accurate until I try that route. The reason I have written all of this is to put other ideas out there for feedback or perhaps others have felt that this may be a contributing factor. All I know is that if everyone stays quite nothing will be learned. I was very impressed with Sandy taking time to help with ideas and suggestions when she doesn't have to because she no longer suffers with this condition. I am very open to any feedback and I am also more than happy to answer any questions that I can. I am more than fed up with not having a sex life with my boyfriend whom I love and who has been totally and completely patient, loving and understanding. I am determined to figure this out and hope that we can all come to finding some answers.

Name:

Frank B.

Email:

Date:

02 Dec 2002

Comment

To Amber: You've got a great attitude, stay positive and strong. My wife was not diagnosed with Lichens but her latest gyn gave her Clobetasol Propionate Ointment to apply to her six o'clock tear . Please let us know if anything helps relieve the tear. Thank you.

Name:

Meg

Email:

lilmegs1183@yahoo.com

Date:

04 Dec 2002

Comment

This is my first time writing, I'm 19 years old, and I have vulvadynia/vestibulitis. I've tried estrogen, diets, and now antidepressants and steroids. None have helped, and I'm feeling desperate because most of the time I feel the pain is unbearable, as I'm sure all of you do too. My doctor said one last resort is surgery, where the nerves are removed with lasers. I was wondering if anyone knew anything about this? Also I suspect my vulvadynia was caused in part by depo-provera, since my most terrible symptoms started after I began the shots. Has anyone experienced this?? Please e-mail me if you have any information about these two things. Thanks!

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

Hi this message is for Tara and Beth. First of all Tara I feel so bad for you. Because you are very young to have to deal with this mess. But I know what you're going through. I was there one time, but throughout the years, I have gotten a lot better. And I believe you will too. Anways, you said that you're burning INSIDE your vagina. Most people get vulva and vagina's mixed up. The vagina is the hole the penis goes in when having intercourse. The vulva is the outside, where the clit and hymen are. Anyways, if you are burning, you may have candida yeast. You should go to a VULVODYNIA

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

Hi this message is for Tara and Beth. First of all Tara I feel so bad for you. Because you are very young to have to deal with this mess. But I know what you're going through. I was there one time, but throughout the years, I have gotten a lot better. And I believe you will too. Anways, you said that you're burning INSIDE your vagina. Most people get vulva and vagina's mixed up. The vagina is the hole the penis goes in when having intercourse. The vulva is the outside, where the clit and hymen are. Anyways, if you are burning, you may have candida yeast. You should go to a VULVODYNIA specialist to have them do a wet smear and look for candida yeast. So it could be that that's causing you the pain. Or it could be the foods you are eating. You may need to change your diet and eat low oxolate foods and/or go on sugar/yeast free diet for about 3 weeks and see if that helps any. Also I use to have Vestibulitis (the burning around the opening of the vagina), but 2 years ago, I had a partial vulvectomy so I don't have to deal with Vestibulitis again. If you have Vestibulitis, you need to change your eating or you may want to consider the surgery. And same for you meg. You may need to consider changing your diet and/or getting the surgery. But DON'T just rush into the surgery like I did. Although my surgery was 100% succesful, some people are not always as lucky. I'd like to know where you are from Tara? What state are you in?

Name:

Email:

Lynn

Date:

04 Dec 2002

Comment

Hi. This is for Tara again. Tara I also wanted to say that another reason you may be in pain could be due to pelvic floor muscle disorder. You would need to see a Vulvodynia Specialist to run test on you to see what's causing your pain. I really do hope things work out for you.

Name:

Dee

Email:

Date:

04 Dec 2002

Comment

Lynn, I had a question for you. I'm glad your surgery was successful. I really feel that that's I will eventually have to try. I don't have that pain when touched with a q-tip, but it is where I always get sore after intercourse and from sitting. I was wondering if you had that instant pain to touch or if it was like I am. I can actually have intercourse. It's the day after that's a killer. It's like my skin has eroded though the doctor never sees this when I go. I think I am purposely going to have intercourse the night before my next appointment just so she can see what it's like the next day. Sorry to be so explicit. She did finally mention surgery the last time I went. I'm going on my 3rd year with this and have been to 12 doctors and have tried numerous treatments. Right now I'm on Nerontin and slowly increasing the dosage. I use estrace cream which burns sometimes and not others. I sometimes wonder if it would heal me better if I had the "special" version made without the alcohol. Also I'm on biofeedback. Dr. Glazer's protocol. I'm not good at doing it as often as I should but I try to do it at least once a day. You're supposed to do it twice a day. Anyway, could you tell me what recovery was like? I'm afraid that if they do this to me that the skin they pull down will be as bad as the skin they removed. I just don't know what to do. Anything you can tell me would be greatly apprectiated. If you want to email me personally, my email address is yteews01@hotmail.com. Thank you in advance. Ladies, all of you are in my prayers that some day soon we may all recover from this terrible affliction.

Name:

Nicola

Email:

nicolahudson@hotmail.com

Date:

04 Dec 2002

Comment

I have just been diagnosed with Vulva Vestibulitis after 16 years. I have read some of the comments but did not see any that resembled my own condition, so now I wonder if they got it right. I really only have extreme soreness just at the time of my husband ejaculating. This will then last for 8 hours or more. I get slight soreness from penetration and using tampons but not uncomfortable enough to stop using them. The area of pain seems to be right at the opening of the vagina. My doctor wants to give me 4 steroid injuections and says they are extremely painful and are not guaranteed to work. Can anyone comment on this . Thank you.

Name:

S1.

Email:

Date:

04 Dec 2002

Comment

This is for Meg--If you go through the guestbooks, you will probably come across some posts from a lady who goes by the name of "Christina Bunny", if my memory serves me correctly. She was done in by that damn depo-provera (spl.?) as well. I really think there needs to be a class-action lawsuit against the manufacturer--there seems to be many women experiencing horrible side effects from this shot. I would do an Internet search and find out as much info as you can regarding your treatment options. I'm certain there will be women out there who can help you in this quest. I wish the manufacturer would be forced to take it off the market--it's ruining the lives of so many trusting young women, it's appalling and disgusting they can get away with it!

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

This is for Meg. Meg I would not have the LAZER surgery if I were you. I've heard SO MANY BAD effects of that. I heard that the pain will go away for weeks/months, but then it returns. If you are considering surgery, just MAKE SURE it's what YOU want! And make sure that's the last resort because NOT EVERY surgery is successful. I had a Partial Vulvectomy 2 years ago. I know longer have to deal with Vestibulitis any more (because they removed the vestibular gland). Anyways I rushed into surgery and although it was 100% succesful, I still regret it because a very small part of me was taken away and although I can have sex now, it's still not the same because my perninium is VERY SENSITIVE

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

This is for Meg. Meg I would not have the LAZER surgery if I were you. I've heard SO MANY BAD effects of that. I heard that the pain will go away for weeks/months, but then it returns. If you are considering surgery, just MAKE SURE it's what YOU want! because NOT EVERY surgery is successful. I had a Partial Vulvectomy 2 years ago. I know longer have to deal with Vestibulitis any more (because they removed the vestibular gland). Anyways I rushed into surgery and although it was 100% succesful, I still regret it because a very small part of me was taken away. But it's not so bad. I just have to watch my foods. I have food allergies. I try staying away from sugar, but then that keeps me week and when I go to the DR. they always tell me I'm Hypoglycemic and need to eat more sugars. I do eat sugar, but just try not to eat too much of it because it can cause yeast infection and that the last thing I really need. Anyways where are you from Meg?

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

Do anyone know of any support groups here and AZ? Please let me know. Thanks!

Name:

Lesley

Email:

Date:

04 Dec 2002

Comment

Hi, Has anyone tried the low oxalate diet? I have heard it takes a year before you can tell if you benefit from doing the diet or not. Has anyone tried Botox Injections? My doctor is recommending this treatment since I have tried just about everything else with no success. If anyone has any insight regarding the Botox injections, if it's worthwhile, if you experienced any side effects etc..... I would appreciate it.Thanks!

Name:

laurel

Email:

Date:

04 Dec 2002

Comment

I don't know if this will help anyone, but I just received the latest edition Vulvar Pain Newsletter (these are ever so helpful), and a woman wrote in saying that she had burning bladder (IC) along with her v.v, and she found great rlief through a supplement called Prelief. I was interested in learning more, so I found their website, easy enough www.prelief.com. It's made from the makers of Lactaid and Beano, and basically what it does is reduces the acidity in foods and beverages. It can be taken orally or sprinkled on food, and is safe. 70% of IC patients reported a reduction in pain, 61% a reduction in urgency. Thought this might help some. Be well, laurel

Name:

Meg

Email:

lilmegs1183@yahoo.com

Date:

04 Dec 2002

Comment

First of all I want to thank everyone who responded to my post. I never expected to get back information this quickly. TO LYNN: Although you don't recommend the surgery, I'm so glad to hear that it has worked for you. As far as diet goes, I've tried to leave out sugars, and it hasn't really helped. Plus without any sugar in my diet I get migraines since I'm hypo-glycemic. I would really appreciate it if you could e-mail me because I would love to ask you some questions about treatments and the surgery. Oh, and I'm from Georgia. Thanks!

Name:

Lynn

Email:

Date:

04 Dec 2002

Comment

This message is for Nicola. Yes if you have pain near the opening of the vagina, you do have Vestibulitis. If it hurts when you're trying to insert a tampon or have intercourse, you do have Vestibulitis. I had it but I had the surgery 2 years to remove my vestibular glands. It was 100% successful. But not everyone is as lucky as I. Good luck.

Name:

Emily

Email:

eroyce@smith.edu

Date:

04 Dec 2002

Comment

Wait, don't pretty much all women with vulvodynia have vestibulitis as well, but not vice versa? There are some women who post here who are constantly burning and itching but can have pain-free sex, but I think the majority can't even hear the word sex without cringing. Isn't it that you have vestibulitis if you only hurt during sex and vulvodynia is more inclusive for symptoms with or without sex? The estrace cream has limited most outside irritation with contact, but the opening has always been the main source of pain, especially near the hymen. The burning...I don't even know where it comes from. If there is pain at the opening that doesn't automatically mean that surgery is a possibility does it? I thought women with vulvodynia were warned against surgery because it's not addressing the other components and sometimes makes everything worse for these women. What's the story?

Name:

Frank B.

Email:

Date:

05 Dec 2002

Comment

To Emily: On the main page here Dr. Glazer gives a thorough definition of Vulvodynia and it includes V.V. . When my wife and i first heard the term vulvodynia we thought it referred to a very specific illness but it seems to cover an assortment of symptoms related to vulvar pain with or without sex.

Name:

KDS

Email:

kellisds@hotmail.com

Date:

05 Dec 2002

Comment

I would like to aplogize in advance for the long message, but I would like to tell my story as encouragement for others and seek advice on future childbirth.I am a 24 year old from the Houston, TX area who was diagnosed with vulvar vestibulitis at the age of 20. I was a virgin when I married at the age of 20, and the problem was apparant immediately. My pain was strictly related to intercourse. I was even able to use slim tampons without pain. I spent about a year going back and forth to my gynecologists, who could not help me. I then switched doctors. My new doctor referred me to Dr. Kaufman in the Houston Medical Center. Dr. Kaufman did an exam, diagnosed the vestibulitis, and sent me to Dr. Esperanza McKay - also in the Houston Medical Center - for biofeedback treatments. At the time, I was her youngest patient. I was very skeptical about the biofeedback at first. I could not see how it would help. However, I stuck with it for a year. My pelvic readings were looking good, but I could not get past the mental fear of the pain. Dr. McKay was great. Not only did she address the physical aspects, but she really sought to help with the mental battle (in the end, the mind was the hardest for me to conquer). I have now been having virtually painless intercourse for almost two years. My husband and I have to be cautious. We can't have "wild", fast sex; it has to be slow and very controlled and in limited positions, but I do not have pain and orgasm every time. Now I am faced with a question. My husband and I are trying to conceive, and I am faced with the question of natural childbirth or c-section birth. I feel like natural childbirth would be ideal; however, I am concerned it may cause my pelvic pain to return? Does anyone have a suggestion or experience?

Name:

Emily

Email:

eroyce@smith.edu

Date:

05 Dec 2002

Comment

Frank: That does not answer my question. Women on this site have been referring to surgery as a possible treatment for vestibulitis but not vulvodynia. If vestibulitis is a part of vulvodynia then it doesn't make any sense. If there is pain in the vestibule does surgery have a good chance of providing relief regardless of the other components involved in the pain? Obviously I'm not asking you specifically to provide me with these answers...I just feel like I had a grasp on the definitions and therefore I dismissed surgery as a possible treatment for me instantly. I know it really should only be used as a last resort regardless of anything else, but if you could at least get rid of the vestibule pain without causing the other pain to be heightened then why wouldn't every women on here be considering it as a future treatment possibility? I know I should be trying more natural treatments, but sometimes I just want to get rid of all of it. If I was given the choice to just get rid of anything to do with my vagina but never be able to have sex or orgasm again I think I would end up choosing the former. Can anyone help me out here? I feel like a moron.

Name:

Frank B.

Email:

Date:

05 Dec 2002

Comment

To Emily: I'm sorry if I added to your pain you must be going through hell. I've been reading and posting since guestbook thirteen and it seems like there are several different illnesses clumped into vulvodynia. Certainly women suffering from lichens cannot get relief from surgery of the vestibular glands, neither can those who like my wife have the thinning skin. I've read of women who get burning resulting from discharge or urination and they try to flush the area constantly. Like I said it isn't just the vestibular pain everyone is suffering from. There are also those who believe they have pain resulting from nerve entrapment. I don't know if anyone has had direct injections of pain killers to the vestibular glands, I know some doctors are suggesting botox which might give temporary relief if the pain is caused by nerve and muscle damage. Do you think your doctor would consider something temporary such as injections to see if you get relief by anesthetizing the glands? I'm not trying to bug you , I'm just hoping you can get some answers and relief prior to any permanent procedure which might not help you. Best of luck.

Name:

susan

Email:

Date:

05 Dec 2002

Comment

To KDS:I am faced with the same question (vaginal versus c-section delivery), as I am set to give birth in 6 - 9 weeks if I don't go past term. My secondary doctor (Dr. Ledger in NYC) just e-mailed me back with his response. I copied it from my e-mail for you to read. Unfortunately, it sounds like we have to be the ones to decide, because there is no clear-cut scientific answer. Here is what he said:"You raise a good question for which I don't have a definitive answer. Your concern is real and your solution (c-section) is logical, but I am always concerned about logic. To wit, I have three women whose vulvar vestibulitis problems began after operative procedures away from the vulva. One after cesarean section, one after an abdominal hysterectomy, and one after liposuction of the thighs. On the other hand, most patients with VV do poorly right after delivery, but then again all patients do with hormones dropping to menopausal levels and sleep deprivation. So, there is no right answer, but I would not object to a cesarean section and I have talked to Dr. Z. about it."So there you have it. The cause of my vv is "the gene" and I can control my flare-ups with a drug. Only problem is that breastfeeding is VERY important to me, and I wouldn't be able to take the meds and breastfeed. My body will not know how to stop that pain without those drugs. I was hoping a c-section was the answer, but it looks like it isn't that simple.Decisions, decisions... I wish you the best of luck. So happy to hear that you have your situation under control.

Name:

S1.

Email:

Date:

05 Dec 2002

Comment

Susan--this is something to consider. I'm not an expert in V.V. or vulvodynia issues, but I would like to make a suggestion regarding your desire to breastfeed. I did a ton of research following the failed attempts at prolonged nursing with my first-born. We only made it to two weeks. However, my third child and I made it to nearly two years. So, I'm a big supporter of breast-feeding. What I'd like to suggest is put your baby on the breast immediately following her birth and try to nurse her as often as possible so she gets all the benefits of your "first milk". Her sucking will stimulate your breasts to begin producing milk. If you are needing to take the Suma (is that what you would take, or would you need to take Vioxx, etc.?) perhaps you could continue pumping your breasts and discarding the milk. If you feel relief in two weeks or less you may be able to resume nursing your daughter after you are finished with your medication. Hope all works out well for you, because nursing is a beautiful bonding experience (once the initial shock of how hungry a newborn can be wears off!:-) Maybe you could answer a question for me? I'm still unsure if I have the gene because I don't feel any deep muscle pain but I have distinct redness that has actually spread twice to now engulf my whole vulva. How is it you can have sex without an increase in inflamation but something as simple as a topical ointment can cause you so much grief? I just don't understand as it seems sex would cause more distress to that area. Didn't all of this begin for you when you tried to remove a tampon? Maybe you can clarify this for me.

Name:

susan

Email:

Date:

05 Dec 2002

Comment

Thanks for the advice. It sounds do-able, except that I'd have to have to let go of the idea of breastfeeding the baby consistently for the 7 months I planned to nurse. I guess that would be a small price to pay though. Something else to think about...Yes, my pain all started with a tampon. Sex never made the pain worse....although thinking about sex for awhile there was unimaginable. I was in so much pain day in and day out that I thought sex WOULD make it worse...plus I just didn't have the desire. Who would? Come to think of it, I am speaking of "penetration," when I say "sex." I guess that's wrong. A couple of times I was a bit sore after stimulation of the clitoris with my partner's fingers. Too much information, I know...I can't explain why some things bother me and others don't. I guess that's what makes us all sound a little looney.I'm a bit depressed right now over the whole breastfeeding/vaginal delivery/c-section quandry. Grrrrr ! It sure would be nice to never have to worry about such matters! I thought I was out of the woods.

Name:

Email:

Date:

05 Dec 2002

Comment

Regarding C sections vs vaginal delivery. This has been brought up in past guestbooks. One problem is convincing your obgyn to do it and the second is getting your insurance to pay for it. Plan well in advance if you are going to seek a c section.

Name:

susan

Email:

Date:

05 Dec 2002

Comment

Thanks to whoever wrote the submission above. I would agree with you, except that in my situation my doc HAS approved a c-section (if I want one) and said he would have no problem pushing it through my insurance company because I have had the genetic testing. They can't argue because I have proof of a legitimate problem. With most cases of v v, docs have a difficult time with insurance companies because they have no concrete proof when a patient's tests all come back normal. That's why most ladies have problems getting coverage for c-sections, disability, etc. Before I had the gene testing my insurance company questioned that fact that I saw so many doctors of the same specialty (I think over a dozen or so) in a short period of time. I've had another thought lately. I still think it's weird that this problem didn't show up until I was 30. I have no doubt about the gene and the problems it can cause......but I am wondering if something (such as a unidentified virus) caused the gene to morph later in life. I would swear I wasn't born with this thing. I also don't think either of my parents had it. My mom has offered to be tested, but we'll never know about my dad because he died a year and a half ago. My unborn baby was tested via amnio and she doesn't carry the gene. It's too weird. I'll have to ask Ledger about it. I know he spent years trying to discover if a virus or bacteria was involved... so he probably has some feedback.

Name:

Lynn

Email:

Date:

05 Dec 2002

Comment

Hi All. Okay, this one is for DEE, MEG and EMILY DEE-Hi girl! Yes I can tell you about my recovery. I don't really know where to begin. I'll try to make it short and simple.I remember I could walk normal 2 weeks after. And I remember always having to keep an icepack on my vulva and that drove me crazy! I think I only had to keep ice on it for a month. I remember everyday how impatient I was, worrying and wondering if what I did was right, if it would be successful or if it just gets worse. Around the 3rd month or so, I always tried sticking a vibrator up in me to see if it would hurt, if i could every have sex again. And it wouldn't hurt, but It was just VERY tender. Around the 6th month, I went to my DR. and he stuck thew tools up in me to run test. He ask me if it hurted and I said no. Then he said that I should be able to have sex again. By the 9th month, I was FOR SURE able to have sex again with no pain. And that was nearly 2 years ago and it's been a blessing. MEG- hello! I will Email you perhaps tomorrow and we can go from there. Emily- Hi Emily. Yes there is a difference between Vulvodynian and Vestibulitis. Vestibulitis is when you have pain in the vestubular glands. The pain is usually caused my inflamation of the blood vessels or just nerves. Vulvoydinia is pain in the vulva. You may have pain in the hymen, in the clitoris, or anywhere in or on the vulva. I use to have pain on the outside, I'd itch and burn and all that. Then I stopped washing with soap (ALL SOAPS) and washed my vulva with PLAIN water everyday for about 2 weeks, then I'd put vanicream on it and it just felt better. No more washing with deodorant, frangrant soaps. I now am able to wash with soap because I've given my vulva some room to breath and get normal again. I use this $12 bottle of soap that is frangrance,deodorant,dye free. After 3 years, I FINALLY found the right soap. I use CHEER-FREE laundry soap. I keep my vulva away from dyes and perfumes. Anyways, I had Vestibulitis and the Dr performed a Partial Vulvectomy, that removed my vestibular glands and if I wanted to have sex, I could and it wouldn't hurt. It does hurt the next day (sometimes). But for the most part now, my pain only comes from eating certain foods that I know I should be eating. The Low Oxolate diet works. Ive tried it, but then started cheating on it. After a whole year of painfree, the pain cameback the other day after drinking some soda. The Dr said my discharge was very acidy and my PH balance was no balanced. So now I have to douche with warm water and baking soda twice a day for a month. Sorry for this long post. Anyone can message me if they'd like.

Name:

Emily

Email:

eroyce@smith.edu

Date:

06 Dec 2002

Comment

Lynn: How do you determine that pain is coming from the vestibule glands? The outside, opening, and inside hurt. Hypothetically would surgery help the pain at the opening and if I have pain in the three different areas does that mean that there are three different treatments I should find? The outside is probably an estrogen thing, the inside is probably pelvic floor muscles, but does the opening need to be addressed individually and is surgery the most appropriate treatment for that?Oh this message isn't just for Lynn. If anyone has any information on any of these please respond. Thank you.

Name:

laurel

Email:

Date:

06 Dec 2002

Comment

Hi all. I just wanted to keep you up to date. I got my doctor to prescribe Terazol (terazol.com) suppositories even though year after year my vaginal cultures for yeast have been negative. I am convinced I have a yeast problem, as I do have discharge that is greenish, and a few other symptoms. I take 80 mgs 3 times a week, and have been doing this for 5 weeks. I also follow a low sugar, lower carb diet (but can cheat on Sundays with little or no effect). Within a week, and I have had this since 1992, I noticed a huge difference, and am having pain free days. I also have proctitis, which when flaring will bring on the v.v., but this has also improved and I am eating a better diet now. If you believe yours is yeast related, then you may want to try these. There are no side effects and it supposed to be safe for pregnancy. I found Dr McNett in Chicago who says you dont have to test positive for yeast to have it, there are so many strains and a stool test is the only way to identify it. I travel there next Wednesday after 2 years of trying to get one of my many doctors to believe this theory, and they either dismissed it or were afraid to treat with long term antifungals even though nystatin and terazol are proven safe, he believes he can help. While I know its not everyone's cause, I think there is a lot more to it, and if I can improve to the way I feel now, I consider this a miracle. I pray that I continue to improve, and you also, thanks laurel

Name:

KDS

Email:

kellisds@hotmail.com

Date:

06 Dec 2002

Comment

Thank you all for your response to the vaginal/c-section delivery question. The input was very helpful. I would also like to wish Susan the best of luck with your forthcoming baby and plenty of success with a breastfeeding solution. God bless each one of you.

Name:

Dee

Email:

Date:

06 Dec 2002

Comment

Lynn, One more question. When you had your glands removed, did your "natural" lubrication stop that your body produces when aroused. I'm told these are the glands that produce the fluids for lubrication. Is there any kind of test that can tell if these glands are swollen or anything. I have to have an MRI because the doctor wants to see if I have a pinched nerve or something and I was wondering if the MRI could show anything about the glands. Do you happen to know/ (Sorry three questions). Thanks, Dee.

Name:

M1

Email:

Date:

06 Dec 2002

Comment

Laurel and all: Terazol suppisoritories, for me, began the absolute worst flair I have had in my life!! The burn was so bad that they acutally ulserated my skin. Be careful with those things!

Name:

Lynn

Email:

Date:

06 Dec 2002

Comment

Hi this message if for Emily and Dee. The only test that I know of that will determine if your vestibular glads are swollen/inflamed/damaged is the Q-TIP test. The Dr. will touch the glands with a regular Q-TIP and if it hurts when he press down on it(even just a little), then that's when he told me I had vestibulits. And yes Dee, lubrication does come from the vestibular glands, but I had a PARTIAL VULVECTOMY, which means they romoved PART of the glands. So do still lubricate, but it's not really a lot that comes out. It's not like I'm dry, because I'm not. So yeah I still lubricate, but it's not a lot like it use to be before I had my surgery. Oh and to Frank- Frank I know your wife has been to so many docotors and she still get the tear at the 6:00 spot ( near the perineum), I was told that your skin can thin out and cause the tearing. It may be due to some kind of hormonal thing. I don't know, I just read that in a book. So I'm thinking her skin is just thin and that's why it tears so much.

Name:

Lynn

Email:

Date:

06 Dec 2002

Comment

And I have a question I'd like for anyone to answer. Why don't these Vulvodynia specialist take any insurance? Why is everything out of pocket cost? It's ridiculous! I called the Female Med Center in LA to schedule an appt with one of the Berman girls there and they said the visit is 350.00 and if I wanted to just have phone appt, where I could just talk to them over the phone about my problem and they could give adv, the phone call would be for just 20 minutes and for 100.00 dollars!! That is so damn crazy! And Dr. Glazer don't accept insurance either! And my DR Davis here in Az doesn't either! I mean I just don't get it!!

Name:

Frank B.

Email:

Date:

06 Dec 2002

Comment

To Lynn: Nice to see you back. Regarding these " Experts" and insurance, I don't like to bad mouth folks but it sure seems like they are taking advantage of the suffering and desperation of you ladies. When my baby daughter was diagnosed with a fatal genetic illness my wife and I went to see a expert in the field. He did not accept insurance and wanted 350.00 up front. He spent about two minutes with us and confirmed what we already knew. what are these Experts doing? I think nothing! It takes some folks all week to earn this kind of money and they demand it for a few minutes with no promise of results. That's the other thing that bugs me. If they want to charge that kind of money why not offer some guarantee of results? Simple there are not any, at least not now. Sorry I got off a bit but this stuff makes me angry. It's like you are suffering with the physical pain, emotional pain and they add this financial burden on top of it all!

Name:

KDS

Email:

Date:

06 Dec 2002

Comment

To Frank & Lynn:I do not mean to intrude into you conversation, but during the time I was doing biofeedback treatments, my insurance carrier was Unicare. Overall, Unicare was a pretty crummy insurance, but surprisingly, it covered the bill for the treatments. Of course, the insurance clerk for my doctor - Dr. Esperanza McKay in Houston - spent a significant amount of time putting a package together to send to my insurance company. She spent a lot of time with me to learn my "medical profile", and she was very knowledgable about the "buzz words" to put in the insurance proposal. It took Unicare about two months to make a decision, and they had a bunch of questions; however, Dr. McKay's office handled all of the questions. In the end, they agreed to pay.

Name:

KDS

Email:

kellisds@hotmail.com

Date:

06 Dec 2002

Comment

I shared my success story earlier in this guestbook, but I would like to extend additional information to those of you who are seeking a caring medical professional. My ob/gyn originally diagnosed my vulvar vestibulitis. He had previous experience with one patient in the past. He referred me to a special in Houston at the Baylor College of Medicine - Dr. Raymond Kaufman. He is considered to be an expert in the field, and at the time I saw him, I was in the waiting room with women from all over the United States (Nevada, Tennessee, Florida). After reaffirming the diagnosis as vestibulitis, Dr. Kaufman gave me a choice of corrective surgery or biofeedback. He and I agreed it would be best to at least try the biofeedback first. He then sent me to his colleague, Dr. Esperanza McKay, also with the Baylor College of Medicine. Dr. McKay is also a leading physician in the field of pain management, specializing in treating vestibulitis & vulvodynia with biofeedback therapy. In fact, Dr. McKay and Dr. Kaufman's published articles can be found on this website. Anyway, Dr. McKay was truly an answer to prayer for my husband and I. At the risk of sounding cheesey, she truly becomes a dear friend you feel comfortable with. She conducts the biofeedback therapy on a monthly basis in a very relaxed setting; you recline back in a LazyBoy in her office. Anway, she offers tremendous emotional support and makes herself available to you 24/7. If anyone is in need of a gifted physician, I recommend Dr. McKay wholeheartedly! I hope someone can benefit from the info.

Name:

karen

Email:

Date:

06 Dec 2002

Comment

M1: I agree Terazol is what actually CAUSED my vulvodynia. I was told my my Gyn. that I had a yeast infection at a routine visit,(I had no symptoms, so I know it was the creme and not the infection). She gave me Terazol and I have never been the same. That was 7 years ago.

Name:

Frank B.

Email:

Date:

06 Dec 2002

Comment

To KDS: No problem, there are no intrusions here we are all in this together. The information you gave may be of some benefit to others so thanks for sharing. You were lucky to have caring folks involved with your illness. Best of luck.

Name:

Webmaestro

Email:

Date:

07 Dec 2002

Comment

Very nice website. Please visit my website!!! :) http://www.metropolis5000.com

Name:

Lori

Email:

Lsl_83@Msn.com

Date:

07 Dec 2002

Comment

This was the best site I've ever viewed and I've viewed hundreds. The next time I walk in to the doctors office I'll know what test should be done instead of trusting a doctor who most likely isn't looking to spend time on apatient who isn't dying. Thank you so much!

Name:

Lori

Email:

Lsl_83@Msn.com

Date:

07 Dec 2002

Comment

This was the best site I've ever viewed and I've viewed hundreds. The next time I walk in to the doctors office I'll know what test should be done instead of trusting a doctor who most likely isn't looking to spend time on apatient who isn't dying. Thank you so much!

Name:

M1

Email:

Date:

07 Dec 2002

Comment

Hi all - I just read about something called MSM (Methyl-sulfonyl-methane). It is mentioned in Amrit Willis's book about Intersitital Cystitis - I've been reading a lot on IC because there is so damn little being done about Vulvodynia - and IC is apparently a related disorder. Anyway - it is a substance used for inflammation as well as an anti-parasitic. It is a supplement, and is supposed to be harmless, having the "toxicity of water." Willis highly recommends it for IC - so I'm wondering what it does for VV. I am going to try to get some tomorrow - in the meantime, has anyone heard of/tried this ??? To the person who wrote about being given Terazol when she had no symptoms - then her problems started - thank you!! My gripe when I read women saying that it all started with yeast infection topicals is this: "what were you using yeast infection topicals for in the first place if you did not feel the irritation of a yeast infection?". How do you know that the irritation for which you used the meds was not simply the onset of VV, and when you used the yeast topicals - it simply did not help you - rather than assuming it caused the symptoms? I think you might be the first person that actually sounds like the irritation did not exist until AFTER you used the Terazol, and THAT is very interesting . . .

Name:

Frank B.

Email:

Date:

08 Dec 2002

Comment

To M1: Good luck with the MSM supplement. I've taken it in the past for overall health. It is sulfur based and might make you a bit gassy. I never took it for more than a week, it seemed to upset my stomach a bit and I don't know what miracle I was expecting but nothing happened. This does not mean you will not get good results. MSM is available in most health food stores and is very inexpensive, do not pay more than six or seven dollars for a bottle of 100 capsules. Just a word of advice to those of you who do not take supplements, when getting involved with these things it is very easy to be taken in with all the hype. They promise all sorts of things depending on their target group. If you do decide to try something please buy one supplement at a time and use it for at least two weeks before considering adding something else to your regimine. You would be supprised how easy it is to get carried away with all these supplements, before you know it you have thirty bottles of pills and tablets, canisters of powders and hundreds of dollars spent. I've taken sport supplements and vitamins for over thirty years in an attempt to get bigger and stronger and healthier. Not much helped and I believe it is very difficult to alter nature with these things. However if you are deficient in something or stressed out this just might be the edge you need. The word is CAUTION, don't believe everything you read they are trying to sell a product. Best of luck!

Name:

Lynn

Email:

Date:

08 Dec 2002

Comment

Hi Frank, yes you are absolutely right! They take advantage of us, all they want is our $$$$!! It really bothers me how this VUVLVODYNIA health issue is such a secret! Either no Dr. knows about it, or they know, but just don't know how to treat it! I wish someone would spread the word, I wish it was a big concern and issue such as AIDS, CANCER, DIABETES ETC... Anyways my guess is is that maybe since only 20% of women have this disease right now, then perhaps it will take about 50-100 more years for that to increase to 50% of women, then by that time, more and more people will know and recognize it as another REAL illness. By then more and more reasearch and studies should be done about it.

Name:

Christine

Email:

statuesque777@msn.com

Date:

08 Dec 2002

Comment

Hi all,I have just found this website, and am glad I did. I have not been diagnosed as of yet with vulvodynia, but I have all the symptoms! This problem started when I was 37. I'm now 38 and have had itching, very intense, sometimes I scratch to the point of slight bleeding! I have seen several doctors, NONE HAVE HELPED!!!!! , been swabbed, thought I had an STD, but thankfully, the swabs came back negative. I was told that it was stress, and I had to try to "break the cycle". I have tried the yeast infection meds, including Diflocan, and nothing has helped. I am seeing yet another doctor on Dec. 24, a dermatologist, I am going to take notes and show them to him. My condition has gotten worse over the last several months, my gyne said I had white, patchy skin on my vulva, and she is finally sending me to the dermatologist. The itch is absolutely unbearable!!!! . I have pelvic discomfort now too. I also have a "full feeling" almost constantly. It burns when I urinate, and I shudder at the thought of going to the washroom. I swear, I think I was born with nocturia, I have always gotten up several times a night to urinate, admittedly this has increased since I entered my thirties. I have had every embarrasing test you can imagine, and the doc's can't solve it. I was told I have overactive bladder and that it is not IC . I underwent several cystoscopies, had a bladder biopsy, and in 1997 had a positive pap result - HPV for which I underwent cervical scraping.It's good to know I'm not alone in this. I personally don't know any other women that have this horrible, embarrassing condition. I hope to God there is going to be a cure. I hope that the doctors will finally realize this is a real and painful condition. Why do so many doctors think that women's issues are all in the head?????God Bless, and thank you for reading this. Please feel free to email me if you wish, and let me know what has helped you.

Name:

Frank B.

Email:

Date:

09 Dec 2002

Comment

To Christine: I hope the dermatologist can offer some relief, meanwhile there are several things women with similar symptoms do for relief. There are several over the counter products described as "Skin Barrier" ointments or creams. They work like A&D ointment would to protect raw skin from diaper rash. Another thing I have read in past guestbooks is to carry a small squeeze bottle of sterile water and after immediately after urinating flush they area. I know these suggestions may not be what you were hoping for but they may provide some temporary reliel until you can get better answers and treatment. Best of luck.

Name:

M1

Email:

Date:

09 Dec 2002

Comment

Christine - If you had HPV than you do indeed have an STD. Your negative swab did not give you the whole story.

Name:

Email:

Date:

09 Dec 2002

Comment

Christine said she had HPV back in 1997 and that she was treated for it. These days, HPV (particular strains of it) can be completely knocked out of the system through aggressive treatment (such as interferon shots and some types of surgeries). Sometimes it even vanishes on its own.I think it's fair to say that her swabs are most likely correct and that she no longer has an STD.

Name:

Lynn

Email:

Date:

09 Dec 2002

Comment

Hi Christine. I read your post and you sounded like me 3 years ago when I first got it. I've never been tested for HPV but I had the same EXACT symptoms as you had. The itching the burning, the stupid Doctors NOT knowing what was wrong!! I've gone from Dr to Dr! Only to find out I had Vulvodynia and there's no cure! So I did my own research and I learned a lot! I just stopped using soaps for 2 weeks and just cleaned with PLAIN water. I'd put vanicream on my vulva twice a day. And I swear to you girl, that was my savior!!!! But it didn't just stop there. I had to follow a regimen. I only washed with soap (VANI SOAP) once a week for 2 years! Then that soap started irritating me so I stopped using it. But now I use this other soap that I think is the perfect soap for me. It doesn't irritate, burn or anything! I've been using it for 2 months now and so far, it's all good! Anyways, so that pretty much took care of the itchy burning filling! But also you HAVE to be careful of the foods you eat to. That may be part of the reason that's causing you to burn as well. Anyways good luck.

Name:

Stephanie C.

Email:

Date:

09 Dec 2002

Comment

For Lynn, I was wondering if this was the same Lynn that use to post months ago...If so, I would like to contact you again...Remember me??? I have had some very good days lately & just wanted to say hi. Let me know.

Name:

Lynn

Email:

Date:

09 Dec 2002

Comment

Hi Stephonie, yes girl it is me =)!!! I was looking for you! I asked Laurel if she heard from you, but she never responded. I need to hear your good news! I don't have that Email address no more. It has been, well I have to resign up or something! I need to hear about you and what's going on! I have some good news for you too! I'll have to set my Email up again so we can keep in touch. I'm at work right now, but I don't want to get contacted through my job. Our issues are confidential-you know? Anyways girl, get back with me and let me know what's up!!! HOLLA!! =)

Name:

Sandy

Email:

achalleng40@yahoo.com

Date:

09 Dec 2002

Comment

Cassidy, how are you doing? I hope things are getting better for you. Just thought I'd check in.

Name:

Emily

Email:

eroyce@smith.edu

Date:

09 Dec 2002

Comment

So I got my blood levels checked now that I'm up to 250mg of elavil a day. I don't really understand it, but the level will ideally fall between 100 and 250. My level was 377. So now I have to start dropping again. I think I was doing better at 200 anyway. But the relief wasn't enough to stay on this indefinitely. Does anyone else have a similar situation? Are there others who waited it out and noticed more relief later? I've been on elavil for almost 5 months now, going up 25mg every 10 to 14 days. I wouldn't experience relief until being on each dose for 7 days or so, and then the initial relief would be over by the 11th day or so. This pattern continued until I hit 200 or maybe it was 175. Anyways it doesn't seem like too many of you have taken elavil for a long period of time or at a very high dosage but if you have any information about this I would greatly appreciate it.

Name:

M1

Email:

Date:

09 Dec 2002

Comment

Just for the record - saying "I had HPV 3 years ago and it's gone because I've been treated for it" is live saying "I had herpes 3 years ago and now it's gone because I've been treated for it". That's just plain wrong!! Once you've "had" it you always have it - there is no cure for HPV!! If you get it, it is yours forever - sometimes your immune can keep it in tact - but you still "have" it.

Name:

Maria Eva

Email:

evadlin@mixmail.com

Date:

10 Dec 2002

Comment

Emily:I think i have the same problem.I was taking Elavil 125 mg , but my body needs hi dosis too.And i don't know why every month i go back to the same pain.Now the doctor try:-elavil 75mg + -prozac 40 mg.But i know something:I have to ate(take,what ever)more.Letme know if you understand my litle inglish.If you want i will try to write whith my husban becouse he is american(i'm argentinian).I'm intrested to know your treatament.Thanks.Bye!

Name:

Marisa

Email:

magongora@hotmail.com

Date:

10 Dec 2002

Comment

CARLA: My doctor in Long Beach is Dr. Douglas Smith from harriman Jones Medical Group. His # is 562 988-7550. He is very sympathetic and helpful. I'm seeing him tomorrow and see if I can remember to ask him about LA docs.Nicola: I did two session of injections. they do hurt like hell. i never imagined I would have that kind of pain. It's like a hot needle being inserted and left for a little time. I don't mean to scare youbut it's how it felt. And this was after local anasthetic gel had been put on. Tip: insist he wait quite some time before injecting, my doc waited less than 2 minutes, as nice as he is. I will tell you that I really did not notice much of a difference. You're supposed to do the injections often and for a few months, but after the second one, I was too unhappy. My doctor agreed we could stop since he noticed new progress. People have said Interferon helps so it might be OK to try if you can get that drug. My insurance didn't cover it. The doc from the V Book said she used it in her practice for 5 years without much success.EMILY: I've tried massaging myself with a small dildo. I did OK for a few days but then it began to hurt and I dreaded doing it. I finally stopped because I was so unhappy doing that. A great book to explain the difference between VVS and vulvodynia is The V Book by Elizabeth G Stewart, MD and Paula Spencer. She actually says "vestibulodynia" : women who have irritation, pain, or discomfort that is specific to the vestibule, the area between the thin inner lips of the vulva. Women may be aware of some constan discomfort in the vestibule." This is women who have trouble with sex, or even inserting a tampon. "Vulvodynia": spontaneous, generalized pain in the vulvar area. There may or may not be pain with intercourse, which is called dyspareunia." This is a great book. I learned a lot and the chapter on sexual healing is very helpful.

Name:

Christine

Email:

Date:

10 Dec 2002

Comment

Hi again,How are you all? I wanted to thank the people that responded to me on this site. You guys are the only ones that understand!!!!!! As for Terazol, I tried that too, it did absoloutely nothing! Im interested in this low oxalate diet thing. Could someone please tell me what foods are ok, even beneficial, and what are problematic? Thanks so much :)

Name:

Lynn

Email:

Date:

10 Dec 2002

Comment

Hi this is to Christine. On behalf of myself and all of us on here, you're welcome! We are all in this together so we have to help each other out the best way we can. We all will be this some day. Some of us have learned how to beat it and some of us are still learning. Without each other, all we have to depend on are the lousy Doctors that don't know what there doing have the time!! Anyways, I just wanted to tell you that there is a 'LOW OXOLATE" cookbook that you can buy. You can get it from the Vulver Pain Foundation. I don't have the address with me now, but I'll give it to you tomorrow. I think it was about $30. It's a good cookbook.

Name:

Lynn

Email:

Date:

10 Dec 2002

Comment

Hi all. I have a question. Everyone's talking about HPV. I want to know how can I get tested without having a biopsy? When I had my surgery, the Dr removed my glands, I asked him to test it for HPV, but he REFUSED to telling me that even if I did have it, there's no cure, no treatment for it or anything. That was 2 years ago, but I know that's not true. I was so upset that he didn't test it!! All he did was perform the surgery and after that, I was history to him. That's messed up, but the good thing that came out of all this is that the surgery was succesful. But still if I have HPV, I do want to know. I wonder if I do have it, does that has anything to do with the foods that I eat causing pain? If you have HPV, does that effect your immunse system? I think it does right?

Name:

Stephanie C.

Email:

scotton39157@yahoo.com

Date:

10 Dec 2002

Comment

Hi Lynn. You can email me @ this address. I wanted to know how things were going with you since the surgery. I have had some very good days. The strange thing is that when I stopped worrying about this problem, things begin to change for me. The burning just disappeared. I still have a LITTLE pain during sex, but that even has gotten better. Email me when you can.

Name:

Email:

Date:

10 Dec 2002

Comment

M1:I think you should speak to an HPV specialist who will share with you all you need to know about HPV. I did, that's how I gained my knowledge.

Name:

Julie

Email:

Date:

10 Dec 2002

Comment

Hi everyone --I wanted to share my recovery story to encourage others, and tell my relapse story (to get some support).I suffered from vestibulitis for years before getting a diagnosis in June 2001. I had pain only during sex and exams. No one would believe me. One doctor said, when I complained of pain during an exam, ?If you can fit a penis in there, you can fit a speculum.?I believe the vestibulitis was triggered by acidic discharge and recurrent yeast/bacterial infections, which I got when I was on the pill. They often went undiagnosed because my yeast discharge is atypical and most doctors never bothered to do a culture when I complained or irritation. I kept taking the pill because I had no idea they were connected.I was diagnosed by Elliot Levine in Chicago, who told me the only option was surgery. Thank god I found Howard Glazer in New York, who referred me back to Ronald Meltzer in Chicago.I did all the environmental stuff (avoiding dyes, cotton panties), went on imipramine (30 mg daily), rinsed after urinating, and did Glazer?s biofeedback (20 minutes). I also stopped taking the pill. I?m not sure which treatment helped, but I think going off the pill was significant. I noticed a chance in my discharge immediately -- much less profuse and irritating. Anyway, I was cured in three months -- no pain during sex. It was miraculous for me.Well, then I went back on the pill in February of 2002, and in addition to other side effects, I got the acidic discharge again. I tired to prevent the yeast my self-medicating with a Diflucan tablet every week, but after it worked for a while I decided to try and go without it -- and got a massive yeast infection. The vestibulitis flared up right after. Sex is painful at entry and I?m sore and swollen after, but I can manage it every few days.I?m on the imipramine again and biofeedback treatment, and I quite taking the pill. I?m scared that this will never go away (especially after seeing how great it was without it!). And, I?m frustrated by my lack of birth control options since I clearly can?t tolerate hormonal methods.So, if you're suffering, know that it can go away.

Name:

Emily

Email:

eroyce@smith.edu

Date:

10 Dec 2002

Comment

Maria Eva: I am also on 300mg of effexor along with the elavil. Effexor is an antidepressant that works the same way that prozac does. Both are SSRIs. I've been on the effexor for years without knowing that it is also used for vulvodynia. I may attempt to switch to elavil to see if I can take just one antidepressant. I'll have to wait until winter break (from college) because the few times when I ran out of elavil were hell (the drop off created suicidal depression.) As of now I am trying the Atkins diet which is surprisingly similar to the low-oxylate diet since both basically state that you can only have meat and some dairy (in the most extreme application.) I believe my next path will be internal massage with a physical therapist or biofeedback (which could be a long way off since I will have to deal with all of the insurance crap.) Can you read English? If so, don't worry about having your husband be the middle man. I understood what you were saying. But then again, I guess it might not be best to risk misunderstanding when it comes to such a delicate condition. Julie: I feel your pain when it comes to birth control. What do we take? It's incredible that most of the reliable methods involve hormones. I've investigated so much, but there really isn't anything out there. Let me know if you do find something, and I definitely will tell everyone if I'm lucky enough to find something myself.

Name:

M1

Email:

Date:

10 Dec 2002

Comment

To the anonymous person who suggested I talk to an HPV specialist - please read my (lengthy) post from November 21st. I've done quite a lot of digging regarding HPV and confirmed my information with more than one doctor, nurse practicioner, and gyno-oncologist. I'm assuming you were diagreeing with something I said in my recent posts, but you didn't say what that was. You are always carrying HPV once you have had it - whether you are having any symptoms or not. It can lie dormant for long periods of time then show up on a pap. You can be in a monogomous relationship for 25 years - then turn up with cervical cancer from HPV that was brought into the realtionship at the beginning. If you contract herpes, have one outbreak, and you never hear from the virus again - guess what . . . you still have herpes - and you can still spread it. HPV is a virus that may not do anything to most people who are exposed to it. For me - I believe it is the cause of my pain and burning. Everyone does not agree on this. I believe it is not one of the strains that makes warts or cancer - but another of the 70-some strains that exist. I just wish that everyone who has been told they have been exposed to HPV would get properly tested (again, read my post from November 21) and insist that if their doctor finds the virus that they "type" it. We would be on to something if we found we all have the same strain, wouldn't we?? Problem is that beyond getting the Digene test - it can be hard to get your doctor to type it. If it's not warts or cancer you're not supposed to worry about it. What if it is just another type that the medical community is ignoring? I know that something like upward of 50% of the population is supposed to have HPV, some studies say more like 80%. I feel like it shows up in these guest books often enough to ask the question, "Well, what type of HPV do we all have?" and "Are they similar strains?"

Name:

Marisa

Email:

magongora@hotmail.com

Date:

11 Dec 2002

Comment

Julie: Thanks for sharing your story. What type of medicine is imipramine? What does it usually treat? I've been wondering if the pill has something to do with this whole thing. My homeopath says it doesn't. I don't think my gyn does either. I've been on it for over 10 years and I've had this for 10 years, I think ever since I had a huge yeast infection and it took months of antifungal to treat. I went to my gyn today and convinced him to let me try the Neurontin (anti-seizure medication) 300mg three times a day. I'm hoping this will work, although I know I have improved with either the noritriptyline or the homeopathic treatments.M1: I'd be interested to know more about testing for our specific strains of HPV. My boyfriend read the V Book with me and he thinks that maybe my HPV (I was diagnosed 6 years ago, and haven't had an outbreak since I was treated with hydrochloracetic acid) is somehow still in my system, maybe not on the skin surface but underneath where it can't be seen. Something to think about.

Name:

Julie

Email:

Date:

11 Dec 2002

Comment

Marisa and others -- Imipramine is a tricyclic antidepressant, used in low doses for pain relief. My doctors, too, all said the pill had nothing to do with the problem. (Seems like to most OB-GYNs, the newest pill is always the answer.) But I?m sure it did. Even when I didn?t have an active yeast infection, I had a profuse and irritating discharge. So I took control of this situation and did what I thought was best. If you suspect the same, you may want to consider going off the pill and seeing what happens. It was a hard decision for me to make, as I am now in a relationship and need the birth control more than ever, but there are other options -- new barrier methods (like the Oves cap, a softer disposable cervical cap) and even contraceptive monitors (like LadyComp) that have effectiveness rates in the high 90%s. By the way, I recently switched from the Oves cap to LadyComp, and have a supply of size 28 caps, if anyone out there wants them, I'll send them for no charge.

Name:

Emily

Email:

eroyce@smith.edu

Date:

11 Dec 2002

Comment

Marisa and Julie: This HAS to have everything to do with hormonal birth control. It can't really be denied if you look through all of the guestbooks. Any doctor who denies such a connection is one that I would run away from. The two weeks I got to enjoy sex were also the two weeks where I wasn't using hormonal birth control. Coincidence? Hell no it's not a coincidence. Julie, what does size 28 mean? I was thinking about getting a cervical cap, but the thought of pain made me shy away from it. I would be interested in getting your leftovers and trying it out. I really should pay you something though. So you are using your internal clock now? I always wanted to do that, since it is the only completely natural form of birth control, but my body isn't regular or stable, and I don't know it well enough to trust in it.

Name:

Julie

Email:

Date:

11 Dec 2002

Comment

Emily, the Oves cap is a type of cervical cap. It?s thinner and more flexible than the standard cervical cap -- made of silicone instead of rubber. You can leave it in place for up to three days. It?s not approved for use in the US, but is approved in Europe and Canada, and studies show 96% effectiveness with proper use. It comes in three sizes (26, 28, 30), and you have to get fitted for it by a gynecologist, but Oves says 80% of women need size 28. You can learn about it at www.oves.com, and buy a fitting pack to take to your doctor (one in each size) at www.birthcontrol.com. It took about half an hour for the doctor to show me how to insert it and be sure I got it right, but you can?t feel it once it?s in place. I?d really be glad to send you my leftovers, all unopened packages at no charge -- they?re just going to waste now -- but you should be sure you?re a size 28 first. You can e-mail me at julieschaeffer@hotmail.com for more info. Anyway, I stopped using it because my partner could feel it (which is apparently rare). Right now I?m using LadyComp (www.ladycomp.com), a small computer device that monitors fertility using basal body temperature. Studies show it has 99.3% accuracy when used correctly -- i.e., no sex during the 6 or so days per month that it says you?re fertile. It apparently works for women who have even longer cycles or irregular periods. You can buy it at www.birthcontrol.com too.

Name:

Julie

Email:

Date:

11 Dec 2002

Comment

Also on the topic of VV beign related to oral contraceptiv euse, see this link: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=12809 'In a study appearing in the Aug. 1 2002 issue of the American Journal of Epidemiology, Dr. Celine Bouchard of the Hopital du Saint-Sacrement in Quebec and colleagues interviewed 138 women with the condition and 309 women without it. The researchers found that women who had taken oral contraceptives were almost seven times as likely as women who had never taken oral contraceptives to have vulvar vestibulitis. Women who began using OCs before the age of 16 were more than nine times as likely to develop the condition as women who had not taken the pills by that age, and the chance of developing vulvar vestibulitis increased further in women who had used OCs for up to two to four years. Pills that contained higher doses of androgen and progestin and lower amounts of estrogen were found to have the highest correlation with the condition. Bouchard said that she thinks the hormones in OCs may "act on receptors" in the vulvar tissue, causing the tissue to become "more sensitive to irritating chemicals" and eventually painful to the touch."

Name:

Lynn

Email:

Date:

11 Dec 2002

Comment

Emily, what's a servical cap? I've never heard of that. And what is a Oves cap-Lady Comp? Can I get an explanation? Thank you.

Name:

Lynn

Email:

Date:

11 Dec 2002

Comment

Another thing, I bougt Prelief yesterday. I'm going to try that out. Has any of you had luck with it?? I got it from Osco Drugs.

Name:

rachel

Email:

rknap77@aol.com

Date:

11 Dec 2002

Comment

Hi, I just went to see my gyn today, and i didnt expect much, but i always hope. nothing exciting, she did a pap even though i had one in march. she gave me some kind of stuff u can get over the counter to balance the vagina. i was surprised that she also decided to give me a precription for Ceftin an antibiotic that i didnt even ask for even though i do think this is some kind of infection in my case. She said that one of the past cultures on me had shown staph bacteria, or strept, i think it was staph. she said its normally there but they can get out of control so try the antibiotic and see how it is. does anyone else know anything about this, have they been told this, or been given antibiotics??? just curious. it might be a normal bacteria like she says, but i swear to god that there is something there. my doctor has not diagnosed me with vulvadynia, i think b/c when she does the whole cotton tip thing that doesnt hurt me. i simply feel irritated by my own discharge. the only thing that helps me is sitting in baths b/c it gets the stuff off of my skin. oh well, hope everyone if doing ok and not having too much pain.

Name:

Julie

Email:

Date:

11 Dec 2002

Comment

A cervical cap is a barrier contraceptive method. It is a thimble-shaped piece of rubber (or silicone, in the case of the oves cap) that fits over your cervix. You can leave it in for 2-3 days. It is usually recommended to use it with a small amount of spermicide, although some studies have shown effectiveness is not decreased more than 2% when it is used without spermicide.

Name:

M1

Email:

Date:

11 Dec 2002

Comment

Rachel: You need to call your gyn and ask some questions - 1.) Why was another pap done? Was the one in March abnormal? 2.) Exactly what bacteria are you being treated for? Staph? Strep? Beta-Strep? What? 3.) Do you need yeast meds to balance out while you are taking the antibiotic? Don't just take the stuff the doctor hands you unless you understand why they are asking you to do what they are asking you to do. Also, no one here can say if they have been told anything like what you've been told if you haven't been specific about what it is - but I, personally, am very interested to hear . . . (particularly if it's beta-strep!) Thanks!

Name:

tara

Email:

Date:

11 Dec 2002

Comment

when my gyno diagnosed me with vestibulitis,she said i was on a good start cause i was on the pill! Now i am confused, you guys say the pill is bad! Also what is the difference between volvadynia and vestibulitis?

Name:

M1

Email:

Date:

11 Dec 2002

Comment

Just for the record - being on or off the pill (Demulen 1/35 has made no difference for me at all. I was on the pill for 12 year with absolutely no problems. My problem began with a new sexual partner.

Name:

Email:

Date:

11 Dec 2002

Comment

My Vulvodynia also began with a new sexual partner, who is now my husband. Any form of sexual contact causes terrible pain, so we rarely do anything and when we do, I just feel like a service station b/c I get no pleasure from the experience.

Name:

rachel

Email:

rknap77@aol.com

Date:

12 Dec 2002

Comment

Hi M1, I can answer some of your questions. My pap in march was normal, but she said lets try it again b/c sometimes they miss somthing and it comes back not normal. She gave me some yeast medication in case i get yeasty as well. Im going to call tomorrow and ask then exactly what it was. I knew at the time, but i forgot b/c my memory isnt the greatest. she said it is normal bacteria in the body, but lets try the antibiotics and see if its helpful. she doesnt know what the problem is so i guess shes just experimenting. i dont have a problem with that b/c i have always felt better on antibiotics. i was on antibiotics for a long time from an unknown neurological problem, possibly lyme, possibly chronic fatigue, they really dont know. but the antibiotics improved that and the vaginal problems. but the vaginal problems always come back and its not even perfect on the antibiotics, just better. i stongly believe that there is an infection going on even though they cant find one. this all started from an infection i caught having unprotected sex, and they documented the presence of an infection. they treated it over and over and then finally couldnt culture any bacteria but i still felt like an infection and my whole pelvis was inflamed and sore and i was naseous, u get the picture. then i came down with the neurological problems and was on antibiotics for long periods which cleared up my stomach pain and nasea and made the infection better. if u know anything about staph or strept or beta stept i would love to hear it b/c i dont know anything. can they cause problems or is it suspected that they can??? hope to hear whatever it is that u know? thanx

Name:

rachel

Email:

rknap77@aol.com

Date:

12 Dec 2002

Comment

oh, my doctor also sid that i have a thickening of my hymen which means that there is an ongoing irritation going on. she said that if we can figure out the irriattion that we could make an incision in the hymen. im not so sure about that, but stopping the irriation certainly sounds great!!!

Name:

///////

Email:

'''''''''

Date:

12 Dec 2002

Comment

8888888

Name:

Kath

Email:

Date:

12 Dec 2002

Comment

I believe mine sarted with a new partner but there were other factors involved that contributed to it. I'll try to make a long story short. i went on the pill for two months and had a new partner. Burning started immediately after,found out I had a yeast infection. Took lots of monistat and then terezol and it still wouldn't leave. Then I found out I had Trich, took flagyl and got a massive yest infection. Started over with the yeast meds and still had burning in clitoris area and pubic hair. Doc. finally tested hormones and found I was in meno at 43. went on combi patch and estrace creme and the burning went away for a month. Came back and then went to a specialist and then they tested for yeast culture, found none saw no bacteria and said to try Elivil. She is a well known specialist in Ann Arbor. She said she didn't think that it has to do with hormones or a std. She has seen burning like this in patients as young as 8 years old and they don't know what causes it. I'm on 10mgs of elivil because she wanted to start me out at 25 but I felt like a zombie. Plan on working my way up but only if my body can handle it. I still believe it has to do with my hormones but then I have so many things that I started with that could have contributed to this horrible burning. Anybody have luck with the elivil? I'm also putting on the estrace cream morning and night as i've read alot have success with this. MI did you notice burning right after with your new partner and did you contract a std with it? I hopeing its just my hormones and that it wasn't my stupid carelessness that has put me in this hell, I mean was it the pill, hormones, over use of yeast meds, meno, std, or what? What a mess I'm in and so depressing!! Thanks for listening! My only hope is that it did go away for a month.

Name:

Kath

Email:

Date:

12 Dec 2002

Comment

Also I wanted to say this was about two years since I've had this and am no longer with the partner that started it. I had HPV about 12 years ago and never had the burning then. Was treated for it and had no problems with it. I was given a hpv test three years back to see if it was still in my system and my results came back negative. My doc. told me that they ar learning more about it and are finding that it does sometimes leave the system. But who knows I could've reinfected myself since but I have to believe its more of my hormones. I am no longer on the pill and was only on it for two months and then went off because I thought it might be why I was burning. I do not have pain with sex and is more after. I have to say also that my burning has improved 50% since I went on hrt. Did not want to try elivil but then I thought i would just to see if it got rid of the rest of it. When I wake up in the morning I feel great and it seems to come on more as the day goes by. Just localized on my right large labia and on the clitoris area and in the pubic hair. I think we should all get your hormones checked no matter what age. My specialist whom I went to to this Sept. is booked thru winter till summer with women with this burning. Also I can't believe some of the high does of elivil some of you are on, did your body have to adjust to it and do you have any side effects? I was so stressed out about this two years ago I lost too much weight and am thin so I can't handle to much meds. Thanks agin for listening.

Name:

Email:

Date:

12 Dec 2002

Comment

To: Kath:What type of test did your doctor perform to determineHPV was no longer present?Did you have another biopsy?Thanks.

Name:

Dee

Email:

Date:

12 Dec 2002

Comment

I just wanted to say a couple of things. Those asking about the low oxilates. My doctor, Dr. Rodke (the one who wrote the book with Dr. Glazer), said to stay away from 7 things and said don't look at all the things the internet says to stay away from because it will drive you crazy. The seven things were, tomatoes, spinach, chocolate, caffeine, berries, citris fruits and broccholi (all the good stuff) and to drink A LOT of water. Drinking substancial amounts of water can lower oxilates by another 30% I think she said. Those talking about beta strep infections, I was told by a doctor that he could have 10 patients in the waiting room and 7 to 8 of them would culture positive for beta strep. He gave me antibiotics because he said that I had symptoms (the burning and irritation). I've been given antibiotics 3 times for beta strep and they made absolutely no difference at all. He said that beta strep is natural in your vagina. I don't go to him anymore because he felt he did all he could do. When I went to Dr. Rodke she didn't even bother about the beta strep even though I told her I seemed to have it often. She said trying to treat it can make your vagina more imbalanced than it was before and her theory is that this is not the cause. My pain also started with a new partner. The first time didn't create a problem but I do remember a discharge a couple of days later, but it was just like a one time discharge. The second time, about five days later we had intercourse about 3 or 4 times and I got very sore and never got better. I have the most pain when I sit and the next day after intercourse. Can I ask in what ways did it start for any of you who say it's from a new partner? I am always sore in the vestibule area right around the opening. Would this be Vestibulitis even if I don't have instant pain with the q-tip test but this is where it always seems to hurt the most? Those on Elavil, I took a 100 mg a day for a year and it did nothing!!! It made me constipated, which was one of the last things I needed because I can get irritated there too. I made mistakes at work even though I didn't feel like a zombie. Dr. Glazer said I definitely don't have Pudental Neuralgia if 100 mg did nothing. Sorry so long. Any Comments would be great. Thanks.

Name:

Trudie.B

Email:

Date:

12 Dec 2002

Comment

Hi everyone, for the past 2 years I have been experiencing a severe burning sensation which was brought on I believe by Gastro Enteritis/Flu symptoms. The burning is initially around the vulval/anal area and then spreads to my whole body, even my eyelids. I have undergone numerous tests by Doctors and Specialists,in order to diagnose my problem, but to no avail. I have recently started taking Neurontin, which helps somedays, however the more I increase the dose, the more drowsy I become. It has been suggested that I have Algodystrophe, but after stumbling upon this webside I now wonder. Has anyone had symptoms as such ? I am 40 years old and at one point suffered severe sciatica and IBS.Could this be linked in any way ? I'm grateful for any response please.P.S...In response to a previous letter, I too feel the burning the minute I open my eyes and can tell whether this is going to be a good day or a bad day.

Name:

kath

Email:

Date:

12 Dec 2002

Comment

I don't remember the name of the HPV test because it was about three years ago. It was taken as a swab with my pap smear and she said it was a new test they had out. I thought for sure I had it and was very surprised that it came back negative. Sorry thats all I remember. Dee, when I first got this burning from a new partner it was all on the outside of me. Large labia Majoria and on my clitoris area and into my pubic hair. Seems mostly where there is hair. But like I said I had other issues going on and I think it was the yeast and the trich. It was also having sex three times in one night and I just thought that might have been too much. I completely regret what I did because of one weekend I messed up my body, I'm just praying it all goes away for all of us.

Name:

Frank B.

Email:

Date:

13 Dec 2002

Comment

To the last post: When I started to post here with guestbook thirteen I wrote that for years my wife and I had sex between one and three times a day. I wasn't bragging or exagerating for us that's what we did. Now having sex that frequently can lead to yeast infections according to something I read on the the women's health section of medscape. Semen can upset the ph level of the vagina and frequent intercourse will increase this risk. Someone wrote something derogatory regarding our sexual frequency but there is no such thing as normal. I just wanted to say I don't think having sex three times in one night will cause vulvodynia. You might get irritated or get a yeast or bladder infection but you can hardly blame it for these serious continuous symptoms. No one knows for sure exactly how or why they are suffering. Is it the pill, antibiotics, a sexually transmitted disease, hormones, genetics, a new sex partner, anti yeast medication???? Just don't blame yourself!!!

Name:

Lisa E

Email:

TERAZOL !

Date:

13 Dec 2002

Comment

I was reading a few posts from Dec 6th and noticed that someone was going to start taking Terazol. I had vulvodynia for 10 years - it only bothered me during intercourse and was actually starting to improve. I wanted to get rid of all pain, however, and went to Dr Rodke in NYC. She prescribed all kinds of yeast meds, one after the other. I was burned so badly by Terazol that over 1 year later I still have spontaneous burning and intercourse/tampons are no longer possible. The yeast medications turned my mild case of vulvodynia into a raging disorder that has really severely impacted my life, negatively of course. Please take heed in using these yeast meds. I would never touch them again! Good luck.

Name:

Jan

Email:

Neurontin?

Date:

13 Dec 2002

Comment

I am new here. I just began treatment for vulvodynia. I have been on 900mg. of Neurontin for three weeks. Has anyone had success with this medication? How long did it take before you felt relief? I think I have had a little bit of relief but still have spontaneous burning. I am just wondering how long I need to be on this medication before I'll know whether it is working.

Name:

Email:

Date:

13 Dec 2002

Comment

Lynn glad to see you posting on here again! I have been gone for quite awhile, too. I never post a name when I post. Always enjoyed your posts. I want to know did your husband finally come home and are you able to have pain free sex? Are you fully recovered? I am much better, but do have flare ups of burning. Emu oil and Protoptic have helped me tremendously. I use the vanicream soap for my body, but the vulva area I use Aveeno soap. What kind of soap are you using on that area? I am the one who told you about the Vanicream soap. You first told me about the cream and I odered it and the soap. Sex is great for me! Since I stopped using regular soaps, I can be touched down there by my husband and it feels soooo good. I think I kept myself too clean before. Never wanted to have any kind of odor. I don't have odors like I thought I would, though. I rinse with water every time I urinate and use a blow dryer to dry area. After sex I rinse with baking soda water. Then rinse that off real good with a large squirt bottle. All of this has made a tremendous difference. Sex seems to help when I am having that awful burning. We use olive oil on vulva area even though I am naturally very lubricated. This helps protect my delicate skin. Ever since I have started all of this stuff I am naturally very wet in that area. Wonder why? The funny thing is I get very wet around the clitoris area. Like right above. Never noticed this before when I did not have these problems with my vulva. I have sooo much more feeling in that area now. Still have to wear those awful knit pants, though. Wore cotton yesterday and feel like I was rubbed with sand paper down there. Looking forward to hearing your reply Lynn!

Name:

Emily

Email:

eroyce@smith.edu

Date:

13 Dec 2002

Comment

I have some questions about biofeedback: Why is it necessary to go to a specialist and get your own machine or even have any kind of instrument inside of you? Aren't you doing the same tense and relax routine with kegel exercises? I don't understand how having something inside of me, and all the pain that comes along with that, would help me to relax. I know you have to work through a lot of pain to get the desired results but I just don't understand the science of it all. Couldn't I just do this on my own?

Name:

Linda

Email:

Date:

13 Dec 2002

Comment

Hi everyone! I am relatively new here. I was "officially" diagnosed with vulvar vestibulitis today but feel a little overwhelmed. I saw Dr. Goldstein from Wash DC in his New York office. Can anyone recommend some other NY doctors for treatment? Dr. Goldstein was great, recommended most of what I have read on this website. But I am afraid that since he is not based in NY it might be hard to follow up on treatment. Could someone explain how this process works? I have not started any anti depressants yet or the biofeedback with Dr. Glazer. How often are follow up visits? I have not had any bloodwork/gene tests done. Just all the usual negative cultures and biopsies. Do you need blood work when you take the antidepressants? I am a little clueless about that. I dont know who I am supposed to work with to monitor any progress (notice I mean IF there is any progress!). Been suffering for quite a few years now and I need to have some hope at the end of the rainbow. Thanks everyone for listening! Any comments would be helpful, especially which doctors to use in New York.

Name:

Julie

Email:

Date:

14 Dec 2002

Comment

Linda, 1) Drs. Glazer and Rodke just wrote a book on vulvodynia, available on Amazon. (Just search for Glazer.) The resource section at the back lists a vulvar pain clinic in NY. 2) Don't be discouraged -- the diagnosis and the research you seem to be doing on your own are huge steps -- many others (like myself) went years before diagnosis, then years with improper treatment, before learning about things like biofeedback. 3) The antidepressant I use (imipramine) didn't require bloodwork. I also made a special trip to NY to see Glazer and did biofeedback, but I never went back for a followup because I don't live in NY, and when my vestibulitis went away I didn't think I needed a followup. Good luck...

Name:

cat

Email:

catnut@optonline.net

Date:

14 Dec 2002

Comment

I have had V.V.D for 3 years and had pretty much given up on figuring out the cause and sort of secretly figured its some unknown virus. I read this guest book alot, but have never posted before. Just the past few weeks I have been having internal right lower back pain. Someone suggested kidney stones. I was researching kidney stones and SO MUCH of the causes and treatments were the same as VVD. Has anyone else had kidney stones or these pains? I am excited at the thought of a connection because then I at least know its not a germ and I will be more apt to commit to a hard core low-oxalate diet. Interested in hearing others opinions. Also I really got alot out of the following article:http://www.vulvarpainfoundation.org/Low_oxalate_treatment.htmGood luck everyone!

Name:

Frank B.

Email:

Date:

15 Dec 2002

Comment

Regarding kidney stones: I can only comment as a guy who has had them. Two years ago i had a kidney stone event and it was truly the worst pain I have felt in my fifty years of life. I have had intestinal blockages and other injuries but they did not come close to the pain of a kidney stone. For me it was increasing, excruciating pain of the right side and back alomost like a pulled muscle which just got worse. Not all kidney stones are alike but mine was the common calcium oxalate. I was told to restrict oxalate food but i really have not. What has worked for me has been a constant effort to stay hydrated. I drink water throughout the day and I don't get lazy doing so. While the cause or causes of vulvodynia remain a mystery, kidney stones are easily diagnosed. Don't hesitate to get examined and treated. Best of luck.

Name:

Linda

Email:

Date:

15 Dec 2002

Comment

Julie - Thanks for the words of encouragement. How was the whole biofeedback experience? I assume you are still on the anti depressants. Did you try different drugs or did the first one seem to work? Thanks so much for responding. Luckily I live in NY so I can go into the city without much difficulty. I just want to know that maybe someday these symptoms will either go away or at least be tolerable! - Linda

Name:

Julie

Email:

Date:

15 Dec 2002

Comment

Linda, I tried a lot of treatments at the same time when first diagnosed --went off the pill (which was causing recurrent yeast infections), took imipramine (the only drug I tried), did biofeedback. I was pain-free within three months. But I don?t know which treatment worked. When ?cured,? I went back on the pill and lowered the imipramine dose, but started getting yeast infections again, and just had a vestibulitis flare-up last month, after a large yeast infection. So I went back on the old treatments, plus tried SUMA (500 mg three times a day), and within two weeks (just last night!) realized I was 80% improved, so I think the treatment is working. I think the condition is terrifying, in part, because we don?t know what causes it -- which means it could just pop up again any time. But having resolved it to a manageable level twice now, I feel better, and think I can offer encouragement to others. Everyone is different, of course, but it CAN get better.

Name:

A.S.

Email:

Date:

15 Dec 2002

Comment

Hi,I was diagnosed with v.v. almost 3 years ago when I was 19. The doctor gave me Lotrisone (betamethasone/clotrimazole) This is an corticosteroid combined with an antifungal. It helped reduce the incidence of the pain occuring but not really the intensity of the pain. I am currently a pharmacy student on my rotations, so it is very difficult for me to make time to see doctors. Every doctor I have seen, does not seem to know what to do. Can anyone recommend any specialists in the San Francisco area. Being a healthcare professional, you would think that I could find someone. But this is a condition that I haven't discussed with anyone...not even my family. I have been dealing with this pain for so long now, I just need something to keep it under control. I have patients of my own to take care of. I don't need to be distracted with pain of my own. I have recently met a guy that is absolutely wonderful. I really don't want to have to deal with painful sexual intercourse. We will not be at that level of our relationship for a couple of months, but that just buys me a couple of months to control this problem. Any advice from anyone would really help. Thank you.

Name:

Emily

Email:

eroyce@smith.edu

Date:

15 Dec 2002

Comment

Is it the same idea behind physical therapy (internal massage) and biofeedback? Both are working toward loosening the pelvic floor muscles so that the spasming stops, but is biofeedback better since it trains your muscles to tense and release whereas physical therapy just allows you to release? Or do both methods allow you to start over so that you can maintain what was gained by doing kegel exercises? I really need to know what from of treatment to try next.

Name:

Maria Eva

Email:

evadlin@mixmail.com

Date:

16 Dec 2002

Comment

Hi!I want to know about biofeedback and phisicotherapy becouse i live in Miami and i think we don't have biofeedback here.I'm in the new doctor now,Betty Bellman(dermatologist)and she trys to change my elavil and prozac for neurotin becouse that treatament is not to much effective in me.Well,she will evaluate if i need biofeedback and Phisicotherapy.But i need to know about this first.Emily:Thank for responde.I'm so happy if you could understand my inglish becouse i'm going to the university here every day (when i feel better)for learn your lenguage.ANd this is very dificult for me( we are all sick but i don't have information in spanish...and my spanish is diferent too...and i'm relative new in Northamerica).Have all a good day.Bye!

Name:

Fran

Email:

dee52@dol.ie

Date:

16 Dec 2002

Comment

HiAm in absolute hysterics as I write this. Think I may have vulvodynia as a result of a very bad yeast infection in July. Numerous treatments later I culture negative for yeast but still itch and burn. About a month ago I had a cervical polyp removerd which I don' t think helped matters and my most recent swab showed anerobic organisms. I live in the Republic of Ireland and would love to know if anybody out there knows of a specialist in such disorders in Ireland. I am feeling so low at the moment. Cant function on a day to day basis, just want this nightmare to end. Please help.

Name:

Donna

Email:

Date:

17 Dec 2002

Comment

Fran:Don't freak out..... It will get better. I know from experience.Just don't panic...... I don't know of a doctor that can help you, but I do know forsure that the pain will eventually subside. I thought I woulddie from monostat and cleocin that ruined my skin, but it healed. It took over a year, but it healed. Good Luck.Keep calm.

Name:

Julie

Email:

Date:

17 Dec 2002

Comment

Fran, I originally got vestubilitis from recurrent yeast infections, got rid of it, and had a flare-up last month after another bad one. My experience is that once you get rid of the yeast, the burning and itching and pain of vulvodynia slowly subside. So the first thing is to try and eliminate the yeast. If you can't find a doctor who can help right now, research yeast on the web. Have you tried regular dosages of Diflucan and Nystatin? I take Diflucan 1-2 times a week after a flareup, for several months. Also look at what's making you susceptibe to yeast in the first place: Hormonal contraceptives like the pill made you suscpetible, and avoid sugars and carbohydrates like bread and pasta. Also, I know Barbara Reed at the U of Michigan in the US is available for phone consults, 734-475-1321. Good luck and don't lose hope.

Name:

Jen

Email:

Date:

17 Dec 2002

Comment

Does anyone know of any anti-depressants to use for vestibulitis that wont cause sexual side effects?

Name:

A.S.

Email:

Date:

17 Dec 2002

Comment

The only antidepressant that I can think of that doesn't cause sexual side effects I believe is wellbutrin (bupropion). Its either that or effexor, I always get the two confused. But they are not SSRI's so I don't know if anyone would use them for VV. All SSRI's do have the potential to cause side effects. Some examples of SSRI's are prozac, paxil, zoloft. You can actually just call your local pharmacy and ask the pharmacist.

Name:

Emily

Email:

eroyce@smith.edu

Date:

17 Dec 2002

Comment

Jen: Anti-deppresants are capable of having completely different side effects depending on the person who is taking them. I have heard that elavil causes sexual side effects, and remember a woman in particular who said she was not able to orgasm while on elavil, but that is not the case for me (if I have a loss of libido it's because of years of pain and not the elavil.) Someone mentioned effexor- I've been on it for almost five years now. I had a very strong sex drive until about a year ago, and once again I'm sure that is not due to the effexor. Then again I have heard women complain about sexual side effects from taking effexor. Well you probably get what I'm saying. Most drugs list about 30 side effects and you never know which ones you are going to suffer from until you try the drug yourself. If you don't like the possibility of certain side effects than you may want to omit all drugs that fall under that category. Sorry I don't have any concrete information to share with you.

Name:

laurel

Email:

Date:

17 Dec 2002

Comment

Just wanted to check in. I have just returned from a visit with Dr Mcnett of the Paragon Clinic in Chicago. I scored high on his yeast questionnaire, after testing negative for years for yeast. The only way to really know if you have it and what strain it is, is to fond a doctor such as him willing to order a stool test to be sent to Great Smokies Lab. I think they are the only ones who do this is the U.S. This doctor treats most for Fibromyalgia and chronic pain that he believes is from years of yeast abuse to the immune system. There is a high incidence of fibromyalgia in women who have vulvar pain, and most dont realize they have these symptoms. Anyway, I have to sent the stool culture out, so he knows with which med to treat my particular yeast. He finds most success with Nystatin made by Paddock Company (sugar free), and its an oral powder mixed with water taken daily, along with a yeast free diet (low carb), and if necessary, a strengthening and self care program or trigger point therapy. it usually takes anywhere from days to up to a year before there is a yeast die off, to which one will feel terrible for days, and then begin to improve. All of these things will kill off the bacteria, it just depends on how severe one is. He sees improvement in most patients. Most of his patients are women, but he treats both. This clinic was very beneficial. It was covered by Blue Cross, and I was there for 5 days, the longer the better for them. There is the massage therapist, nutritionist, docotr, and phsychologist, and someone there to show you stretching techniques when they are not there to do it. I will keep you all up to date once I begin the treatment, and let you know. BTW, the Diflucan did not help me, but the Terazol is. I guess we all respond differently. I know that yeast may not be the cause for everyone, but if you think it is, I hope it helps! Take care, laurel

Name:

jen

Email:

Date:

17 Dec 2002

Comment

thanks for answering. I have been on elavil for only two and a half weeks and already i am getting sexual side effects. But i will ask my gyno about the ones that u mentioned.

Name:

Julie

Email:

Date:

18 Dec 2002

Comment

I think the side effects of antidepressants depend on how much you are taking and how long you are taking them. They are used in extremely low doses for chronis pain. For example, I take 30 mg of imipramine daily and have had no sexual side effects for over a year -- but then again, the "regular" dose for depression is 75-150 mg a day. Plus, side effects tend to wear off as your body adjusts. Initially I had a little dizziness upon standing (due to lowered blood pressure), lack of appetite, and moderate insomnia, but that all wore off after a couple months.

Name:

Lynn

Email:

Date:

18 Dec 2002

Comment

Hi all. I tried posting yesterday and I thought it went through but I guess it did not. I have a lot to say, but I'm at work now and I'll have to wait til I get home so I can get very personal. I expecially wanted to send a message to the ANONYMOUS person who messaged me on 12/13/02. Sorry I took so long to get back with you, but I haven't forgotten. I will try to get back with you all later on this evening. Have a good day!

Name:

amy

Email:

amynickelus@yahoo.com

Date:

18 Dec 2002

Comment

Hi all! I haven't been diagnosed with VV, but about 4 months ago after a treatment of antibiotics for folliculitus, my vulva went from feeling normal to not feeling normal (after reading many of the entries here, it seems that is the case with a lot of us). My main problem area was the perineum, where I had 2 distinct red sore areas along either side (these areas would tear just from wiping or even touching them). I went to the Dr. and was diagnosed with a bacterial infection for which I was prescribed Flagyl. Since that time, I've been back to the Dr. twice and although the sore area is no longer tearing, my whole vulva in general just does not feel like it used to; it feels dry and irritated and sex causes tears in the 5-7 o'clock region. I was prescribed lotrimin and then nyastin (with something else, can't remember it right now), both of which made the area worse. I've started wearing all cotton underwear (and no underwear when possible) and taking sitz baths at night, which has seemed to help; however, sex is still causing tears, which is really frustrating. I was wondering if anyone could reccomend a doctor in the Maryland/Washington DC area? Thanks!

Name:

Frank B.

Email:

Date:

18 Dec 2002

Comment

To Amy: If you have read through the last couple of guestbooks then you know my wife has a problem with tearing, hers is the same spot six o'clock. Like many of the women here she was prescribed and used Estrace cream to thicken the skin. This did not work for her and if I am properly informed prolonged use of topical steriods actually causes thinning of the skin, the exact opposite of what we want. I wish you the best in finding the cause and treatment for this terrrible illness.

Name:

Frank B.

Email:

Date:

18 Dec 2002

Comment

To All: At the request of my wife I will no longer post on this site. She and I have our problems and she does not like that I discuss things that are personal to her. I don't agree but will respect her wishes. I will continue to read here and hope to learn more. I think the emotional support along with the exchange of information is great. Lastly for all those who have symptoms involving tearing and skin irritation, I know many of us believe yeast and bacteria are to blame but I was watching Public Broadcast T.V. over the weekend and they had a dermatologist who felt many skin problems arise from high cortisol levels brought on by diet and stress. I guess if the skin is weakened for some reason it is more sensitive to yeast and bacteria. Just a thought. Best of luck to you all and stay strong.

Name:

anonymous

Email:

Date:

18 Dec 2002

Comment

Amy-In D.C., there is Dr. Andrew Goldstein and Lucy Treene (a specialist who is a physician's assistant). Her number is 293-1000. They are both good. You may want to contact her first only because she is less expensive and takes insurance, then go to him if you have to. I don't have his number off hand, but someone else may. Good luck.

Name:

Email:

Date:

18 Dec 2002

Comment

Frank you wife should be thankfull that ur concerned about her and want to chat with other people to help her problem. And not only help her problem, but help give information and get information. I would write more but im at work. bye good luck to all the women

Name:

Linda

Email:

Date:

18 Dec 2002

Comment

To Amy: I saw Dr. Andrew Goldstein when he was in NY recently. His main office is in the Maryland/DC area. To: Everyone: Hi ! I am at the very beginning of this whole treatment process. Like most, I had many years of misdiagnosis. The doctor who diagnosed me recently discussed how the overtreatment of yeast infections (when there is actually no infection) can lead to an increase in mast cells and the proliferation of extra nerve fibers, along with nerve damage. He recommended the usual starting of Effexor as well as biofeedback treatments. Does anyone know if they actually test for these extra nerve fibers or how they can determine nerve damage? I have to switch doctors for insurance reasons, so I go to a new one in January. Also, I have a LOT of pressure in my anal area, but I stupidly have not discussed this with the doctor yet. I guess it comes from being so fed up with doctors that dont know what they are talking about. Does anyone also have anal pressure? I am so sore in the vulvar area that I cant tell if the pain is also localizing in other areas. Have many people been tested for the gene that has been discussed recently? I know these are a lot of questions, but I am a newcomer! Thanks for anyone who can respond. We are all in this together!!

Name:

ifeanyi ani

Email:

ifeanyiani322@hotmail.com

Date:

19 Dec 2002

Comment

l need a fat women

Name:

Christine

Email:

Date:

19 Dec 2002

Comment

Hi all,Im new to this site. I just found it this month. How are you Lynn? I'm seeing the dermatologist on Tuesday, and am hoping he can do something for me!!!!!! I currently take 20 mg. Prozac daily and it does nothing for the pain. Im thinking of possibly changing it to a tricyclic one. Are there any antidepressants that don't cause weight gain??? I guess it depends on the individual. Does the doc have to do certain tests for vulvodynia? Does anyone know if vulvodynia is an STD?? I know I have to do more research, frankly the info is quite frightening. This itch is driving me mad..... it's ridiculous.......does anyone know if there is a med to control the itch? The docs I've seen thus far, know nothing!! Thank you for letting me vent.......I hope we all find relief. God Bless.

Name:

DB

Email:

Date:

19 Dec 2002

Comment

To Frank BI've been reading your entries, and even though I've never shared my experience on the web before, your wife's story made me feel like I have to share what I know with you. I read your last post and I understand you won't be able to ask me for further information if needed and so I'll try to give you as much information as I can on this post.I'm 24 years old and was diagnosed with Vestibulitis when I was 19. After going through a long period of time not being able to function normally (difficulty walking, not being able to have intercourse etc.), and going to many doctors without finding a cure, I finally found a doctor who helped me get rid of this horrible condition. He gave me 2 creams that I used twice a day for about 3 months. The first cream is composed of Mupirocin 2% in a water soluble base, and the other cream had the following composition per gram:Nystatin 100,000 UnitsNeomycin (as sulphate) 2.50 mgGramicidin 0.25 mgTriamcinolone acetonide 1.00 mgin a plasto-gel base.As I said this cured me of vestibulitis completely.However, I discovered that I have a tear at the 6 o'clock position, which makes intercourse difficult. I've tried using estrogen cream to treat the skin but that has had limited success. I'm now using Vitamin E gel followed by an oil composed of Tea tree, Calendula, Lavender, Rose in base Jojoba oil to treat it and am starting to see nice results. I go to a physical therapist once a week and she streches the skin, massages and does Biofeedback. I don't live in the U.S but I do recommend going to this website www.womentc.com. The therapists there have helped me before, and if you are looking to find a good obgyn anywhere in the world, call the university of Michigan, where I got a recommendation for the doctor who helped me.I hope this info might be helpful to your wife, and any other woman who suffers.

Name:

Email:

Date:

20 Dec 2002

Comment

Vulvodynia is not an STD.It is a pain syndrome that can cause burning and painin the vulvar area. Vulvodynia can be caused by manydifferent causes, such as yeast infections, bacteria infections, herpes etc. The diagnosis of vulvodynia does not mean designate an STD only if an STD likegenital herpes is c a u s i n g or responsible for your vuvlvar pain.

Name:

kim

Email:

khsavage25@hotmail.com

Date:

20 Dec 2002

Comment

I was glad to see a few (though not too many) folks like me whose vestibular adenitis seems tied to childbirth. I was fine, perfectly normal, until I had my baby 9 mos ago. My delivery was rough--prolonged, with forceps and a 3rd degree tear that took forever to heal. Now I have the burning and discomfort, caused mostly by pants. I was on Neurontin, which did very little for me. I've also had a few vestibular glands excised, which seemed to work at first, but the pain returned. I think the hardest part of this is the fact that every day is so different, and there's never any real, sustained improvement. I'm actually crying as I write this, it's perfectly awful. My question, though, is this: is there anyone else out there whose symptoms were so specifically tied to childbirth? If so, did they subside with time? I'm so desperate. Sex isn't even conceivable at this point. I just want to feel like a normal human being again. Thanks for the opportunity to post.

Name:

M1

Email:

Date:

20 Dec 2002

Comment

There are lots of theories of the cause of VV - but no one really has any idea what causes it - so don't get all cranked up about it not being an STD - there is absolutely no proof at this point whether it is or isn't.

Name:

Email:

Date:

20 Dec 2002

Comment

v.v. may be a std for some, but not all, i have had this since the first grade, so i think i can vouch for that. the only thing i can think of is having a lot of uti's during that time and a whole lot of antibiotics!

Name:

LM

Email:

Date:

20 Dec 2002

Comment

I do not beleive it is an STD at all. I think mine was brought on by heavy use of antibiotics and allergic reactions to treatments of yeast infections by topical creams when I did not have yeast infections. The doctors would see the irritation, assume a yeast infection without a culture, and continue to treat it with all different types of creams. Eventually all chemicals became irritants. And the suffering doesnt seem to end! Thanks for listening...

Name:

LM

Email:

Date:

20 Dec 2002

Comment

Just a follow up to my previous comment ... I think one of the worst things the medical community did was approve Monistat, etc. for over the counter availability. Now all of us were able to "self-medicate" our infections, even though we might not have had one, resulting in even more damage. I dont think I would be in such bad shape if it werent for all the doctors diagnosing me with yeast and sending me on my way with some topical creams. They never listened to me when I said I didnt think it was an infection.

Name:

Annie

Email:

Date:

20 Dec 2002

Comment

I was just diagnosed Wednesday with VVS. I've had this pain since as long as I can remember. It all started when I tried to wear a tampon when I as 14...I thought I was just doing it wrong. I don't think Vulvodynia is an STD because I was a virgin...and was until I got married. And the pain was still there. I'm still having mixed emotions about it. Part of me is relieved that it's not all in my head...another part of me is devastated because I can't have sex...it hurts too much. Sometimes I think it's just not fair. All my friends can do it, but I can't. I'm 22 and have been married for almost a year and a half. I'm a student at the University of Michigan and my referral to one of the doctors here was the answer I needed!!!!!!!! This website gives me some comfort that I'm not alone...although I feel alone being as young as I am.I'm very skeptical about the treatments I'm going to undertake...mostly because I've never been without the severe sting and burning. I hope something works for me.

Name:

Email:

Date:

21 Dec 2002

Comment

To M1:I am not "cranked up". The above posts speak for themselvesas well as my physician, who is a specialist in this area,who has told me that vulvodynia itself is NOT an STD.Thanks, but I will follow his expert medical opinion on this one.

Name:

Email:

Date:

21 Dec 2002

Comment

My physician is also an "expert" on vulvodynia. He continues to recommend Monistat for my yeast infections. He ignores the obvious link between m BCP and pmy VVS, even now that recent studies linking VVS to oral contraceptive use. Shall I go on? If there is anything the women on this board know, it's that doctors -- even the experts -- don't know a lot about vulvodynia. No appeals to authority here, please.

Name:

Email:

Date:

21 Dec 2002

Comment

for the above post:Why are you still going to that doctor????????????????

Name:

Dana

Email:

Date:

21 Dec 2002

Comment

We will miss you, Frank. I hope that your wife realizes what a sensitive man she has. You are right to respect her wishes, but I do hope that she will come around and want you to post again and even post herself. Thanks for your insight and encouragement over the last 8 months that I've been reading this site.

Name:

Email:

Date:

21 Dec 2002

Comment

I think M1 had a good point about the STD thing. For some who have had pain since childhood, before any sexual relation at all, an STD is obviously not the cause. For me - I do think it is related somehow to HPV, which is an STD. It's great that some of our doctors say "Well, this is not an STD . . ." I'll believe that they actually know what it ISN'T when they can tell me what exactly it IS!!!

Name:

Email:

Date:

21 Dec 2002

Comment

LM, it does not matter that Monistat is over the counter, because as you said the doc's sent you on your way, and told you to buy some...if you had needed a script they they would have just written you one. You are right about doc's misdiagnosing yeast infections, AND I think you are right that when you have vulvodynia those creams can be more irritating and make things worse, BUT the fact remains that you had a GYN problem, the monistat did not cause your problem, don't get caught up in the anger many people have at monistat, most of those women were sick BEFORE the creams, that is why they used them. Someone else commented about HPV, and I do not beleive that it is a likely culprit...but if you caught HPV you might have caught something else that doc's are missing.For the girl that has been sick from such a young age, from before she had sex, I really feel for you. Not trying to take away from anything you have said, but I know someone that had a lot of trouble with tampons when she was young, until she finally lost her virginity...very tight/thick hymen. I do not remember if you have had sex yet, but I do not reommend necessarily trying it, but you could have a doctor break the hymen while numbing the area if you wanted to. What I don't remember is if you are in pain all of the time, or just during penetration of the vagina?

Name:

Linda

Email:

In response to Annie:

Date:

21 Dec 2002

Comment

I know what you mean about feeling devastated at this point. I had my suspicions for the last few years that I had vestibulitis but only got an official diagnosis recently. I try to tell myself that it is not a life threatening thing, but I feel so young to have to give up on any kind of intimate life. Maybe we are just at the beginning of our courses of treatment, but I want to believe that we will eventually feel better. It gets me mad (and sad) when I think about it because I dont truly understand what the cause is. The constant burning has changed my personality. I just feel so aggravated all the time. I am so sick of it. I am only now finding doctors who understand what I have been saying for so long. But there is no quick fix, if there is even one at all. I just started reading Dr. Glazer's book and I think it is great. Have you read it yet? Also, I know I am blessed with a very understanding partner, and hope that you have the same. Hang in there - let's hope for a better 2003 !!

Name:

Email:

kisssmygrits@hotmail.com

Date:

21 Dec 2002

Comment

Lynn, this is the person who posted the message to you on Dec. 13th. Email me at the address above.

Name:

Marisa

Email:

magongora@hotmail.com

Date:

22 Dec 2002

Comment

JAN: I just started taking 900 mg of Neurontin but it's only been a week. Let me know if you have any side effects or progress, and I'll keep you posted. Maria Eva: Si quieres comunicarte con alguien en espa?ol acerca de vvs y los tratamientos, mandame mensaje a mi email address. No hago email muy a menudo pero no tendria problema en compartir informacion. Regresare despues de las navidades y vere si me escribiste. Cuidate.

Name:

Email:

Date:

22 Dec 2002

Comment

While we don't know exactly what vulvodynia is, those of us who haven't slept around, know that for us it's NOT an STD.

Name:

Email:

mutt39581@yahoo.com

Date:

22 Dec 2002

Comment

After traveling the same road as most on this website I had a biopsy which showed squamous dysplasia and I'm supposed to have laser surgery for this. I'm wondering if anyone knows if this dysplasia can cause the pain and burning symptoms and if the surgery should cure it............help!

Name:

Email:

Date:

22 Dec 2002

Comment

For sure people who have never been with a man did not get this from sex, but just because you are with a study man, does not mean this is not from sex. Many people have had the onset of their symptoms start with a new sex partner. I am not trying to convince anyone that what they have is sexually transmitted, I am just saying that if it is a possibility don't be swayed away from that idea if it fits your circumstance. People have been significantly helped by antibiotic treatment. The doctors will never say it is an STD, because it has not been proven, but that does not mean that it does not exist. If you know it is an impossibility than obviously it is an impossibility. BUT if you have displasia, HPV, or another STD (which may have been cured now) or herpes, you have had unprotected sex.

Name:

Email:

Date:

22 Dec 2002

Comment

The person with squamous dysplasia....is it on your vulva or your cervix? Did you have a hybrid done? Make sure they are not just seeing inflamed cells (this mistake really does happen). It has basically been shown that HPV does not cause vulvodynia, and your treatment most likely won't get rid of your pain.

Name:

anonymous

Email:

Date:

23 Dec 2002

Comment

Merry Christmas! It has been almost 6 years since I discoverd the world of vulvadynia. I want to give hope to those ladies who are struggling. I have improved. It has been slow and I still have symptoms, but there are a few things that help me that I want to share. DRINK LOTS OF WATER. I drinkdistilled water, usually 1/2 to 1 gallon daily. Stay away from salads, coffee, tomato sauce, fruits and veggies. Fruits and veggies are ok as long as you don't over do them.I take lorazepam 1mg for flare ups. It helps tremendously. Please don't give up. I takes time, but symptoms do lessen.God bless you all.

Name:

Emily

Email:

eroyce@smith.edu

Date:

23 Dec 2002

Comment

Holy hell. Where are the familiar wise women of patience when you need them? The hostility on this site has gotten out of control. Heated discussion is welcome...if it is intelligent and with good intentions in mind. I don't know why suddenly everyone thinks they know the one cause of vulvodynia and the one "cure." Reading just the past 30 posts or so should give everyone an idea of the range of causes and treatments. Differences in experiences should be taken as enlightenment, not something to be slammed with no unbiased information to back your opinion up. The thing about vulvodynia is that it is a blanket term. There are probably at least a dozen conditions we are dealing with. Since the only thing doctors seem to know about vaginas, when they are not pushing out babies or blood, is that they like to harbor yeast, it should not come as a surprise to anyone that doctors are attached to their individual (or the first one they've heard of and borrowed) "theories" or, if they are arrogant enough, their strong convictions on what vulvodynia is and is not, if they've even heard of it. Causes I've heard of are: antibiotics, chronic yeast infections and the misguided treatment of them, chronic UTI's and inflamed batholin's glands due to that, HPV, trauma to the area, irritants such as those in tampons or detergents etc., surgery, biopsies, birth, steroid creams, menopause and lack of estrogen in general, hormonal contraceptives, etc. etc. etc. I know that I identify with quite a few of those causes. And I also know that I definitely do not know of ALL the many causes, and none of us can possibly know that information ever. And as far as treatments are concerned, all personal experience is welcome but please do not pretend that you have found the cure to end all cures. If you have not had to go through treatment upon treatment before discovering the combination perfectly tailored to your body, then know that most are not nearly as lucky as you. If you have, then you should realize that just as individualized a treatment is necessary for EVERYONE. If you list your symptoms, what you think some possible causes of your pain may be, and some of the previous treatments tried, then your regimen that you swear by will be more meaningful to those reading the posts on this site. No woman should copy a regimen found on here word for word without asking and further investigating to see if the similarities in experience are prevalent enough to even consider the proposed treatment. But neither should anyone be so hazardous as to post personal information without contemplating that some desparate woman may take opinion as fact and individual experience as universal. We all have the responsibility to investigate for ourselves, but I know being 19 and desperate for some kind of normalcy (asexuality is just the icing on the cake for me) can drive me to do some things that are not all that thought through. I think it is ridiculous that I am accustomed to be scolded on this site for not knowing my body well enough and now I am telling women who may be twice to three times my age that not everyone's body is the same as yours. I'm 19. I had painful sex from age 16-18 with my boyfriend of over 4 years now. Finally I admitted I must not be normal. 8 or so "doctors" later (doctors enough to think that they were going to know the problem by looking between my legs) and I'm not much farther along than when I started. I am in a heck of a lot more pain though. Once I happend upon "The Camera My Mother Gave Me" by Suzanna Kasing (spelled phonetically) and looked up the word "vulvodynia" mentioned in the third chapter, I was shocked to read the symptoms and discover that it was unusual for a vagina to sting and burn all the time. Isn't that what a vagina is supposed to feel like? And then I realized that I thought that because it has felt this way for as long as I can remember, at least since age 8. I remember telling my mom that I felt like I always had to go pee and when I did it burned. In fact it burned all the time. She just frowned and burrowed her eyebrows in thought. I'm glad she didn't do anything because I would have been going through all this bureaucratic crap for 11 years now instead of 2 and I would have lost out on any kind of a childhood in the deal too. So tampons always hurt. Everyone said you shouldn't feel them. After awhile I knew I couldn't be doing it wrong, I just accepted that I was different. The first time my boyfriend fingered me it hurt. I could never take more than one finger. The need to pee thing would crop up every once in a while. I always itched. I thought I was just being a sissy and everyone else itched too they just dealt with it. That's why I always get on guys' cases when they scratch their balls. "It itches, why not scratch?" Because I can't scratch my vagina through my pants and that's why you shouldn't be able to do it either! First time I had sex was the most painful event of my life. And let me just tell you that I've had a migraine for 6 years straight, a back that is thrown out and spasming often and hips that pop out of place. I grind my teeth during the night so badly that I cause them to weaken and chip, change shape, and I grind down my thick plastic bite-splint until I bite it in two. I pick at my feet and take off hunks of skin so that they are pink and raw and bleeding. I used to take scissors to them so that I could cut all the skin off. I bite on the insides of my cheeks so that the tissue thins and bleeds. I waxed, plucked, and then shaved the pubic hair off that was stubborn enough to still be present. After that, I plucked the sprouting hairs every day. It always involved lots of pinched skin, blood, sores, and stinging long after. Yes, I am messed up. I have an unusually large amount of things wrong with me physically,and I only accerbate those things by letting my mental state determine my actions. I am addicted to pain. That is until I discovered that my vagina was the one calling the shots and not me. I didn't tell others about it. Now I have to because I am told it is my fault I am in pain because I never said anything. Seems like I talk about pain all day long. I thought I had a high tolerance. That was until the first time I had sex. Nothing I have been the victim of or have inflicted on myself can even pale in comparison to the pain I felt on that night. I tried so hard not to cry. I almost passed out but instead I flipped him over and pretended I was enthusiastic about it when really I just wanted it to be over as quick as possible, no matter how unskilled. I waddled off to the bathroom after with blood all over my butt. My first annual exam was very painful. She said it shouldn't hurt so I didn't say anything. She said it was no bigger than a penis. She didn't ask if a penis hurt. I thought I was being a sissy. Second annual I explained to her very delicately that sex was painful for me. By this point I was able to admit that that was unusual. Of course she asked the familiar lube question. Let me just tell ya- I get so wet that it is almost to the point of being ridiculous. I've got a puddle before anything has happened. Her big bright idea: Since I wasn't orgasming during sex, it was the tension building up without the release. I told her that was hard to believe considering that everything I have read indicates that only about 30% of women orgasm during sex with penetration alone. She told me she hadn't read that and that yes most women do. I'll believe Cosmopolitan, the most sexed-up mag there is, to tell me the unsexy fact that most women don't come during sex over some fifty something who is only going off her own lucky experience. I have never had someone be so rough with me. She was jerking her arm back and forth, up and down. I still don't know what she was doing. Once she realized I was sobbing she said "Oh, does this hurt?" I heard her talking to the rest of the staff outside the door once it was all over. Their stroke of genious "Well did she try lube?" At school I got off birth control after being on depo-provera for two years and nauseating mircette for 3 months (first thing tried for vaginal pain was a switch in birth control.) I decided I wouldn't be having sex until I figured this pain out. Got back home from school and me and my boyfriend had a "sounds like we are going to break-up talk." My remedy was to declare that we should make love. What do you know it felt good. I was in total surpise, utter shock and awe. I convinced myself that it felt good because "Getting off birth control went along with how I was raised. Traditional Catholicism teaches that birth control is not natural because if you are not okay with the prospect of a baby then you should not be having sex. Getting off birth control must make me feel like I am not such a sinner, eventhough I don't consciously recognize that that is how I feel about myself." It was good for a week and then I finally guilt-tripped my way into Planned Parenthood yet again. I told her the situation- that I was nervous to get back on birth control when the only time I had been able to enjoy sex was the week I was off it. She suggested condom use. I wouldn't accept less than the most effective birth control so I got on loestrin. Sex hurt again. I was pissed. We broke up a little over a month later. I stopped taking the loestrin. We saw each other 3 weeks later. We had sex. It felt good. Another blissful week went by. Then the guilt and a return to loestrin which meant a return to pain. The connections could no longer be ignored. Problem was, it appears by that time I had permanantly screwed myself with progestrin-based contraception. No one helped to guide me in any of my decisions. Once I began visiting this site I discovered that depo is probably at the root of the problem for many women suffering from vulvodynia. The two kinds of birth control pills with the least amount of estrogen- mircette and loestrin- only helped to deplete my vulvar tissue of estrogen, only furthering the thinning and increasing the itching. I picked them because they were the only kinds that didn't make me want to puke all the time. No one warned me. Third annual was the worst eventhough she was as gentle as possible. I was going to read a magazine and keep myself preoccupied since at this point I had bought into the idea that was pumped into me every visit: it's psychological. As soon as that speculum began to enter and I felt this searing, raw pain like every wall of my vagina was being forcefully stretched in all directions causing tearing, and then like acid was being rubbed in all of the cuts, I knew that it couldn't all just be in my head. The day I acknowledged that was the day that the real hell began. Knowing you have something seriously wrong with you and then having doctors, the media, friends, your subconscious, strangers, people you've never met and will never meet and everyone else in the whole wide universe not only ignore you but try to silence you, belittle you, and scoff at you in the name of "not causing a stir" makes having my vagina so much harder to bear. Heaven forbid that women try to rock the boat with the crazy mishaps of our vaginas. The whole world applauds Bob Dole for being able to talk about his erectile dysfunction. Medicare dished out $36 billion for penile reconstruction surgeries just this last year. And it is said that the topic is "too hot to touch." Where's the money when I can't sit in class? Where's the money when writing a paper not only becomes a drag but a painful ordeal? Where's my money for submitting myself to the abuse of doctors only to be told that I am a liar and a whore? You want to silence me with lidocaine so that I can be someone's f*ck bag? Tell me to "use it or lose it" when I can't even go to the bathroom anymore without crying? Pity my boyfriend who "has his needs" when for two years I "made myself available to him" despite the pain because as women we are told from birth to please and not to "bitch.?" Slap some lube on and shove a big dick up me when a pinkie can no longer even fit? This is 2002! The aftermath of the feminist revolution! I go to Smith College- the most liberal all women's college around- and I can't get a damn person to take me and my vagina seriously! Along with so many other young women who have posted recently, I am depressed, angry (obviously), and even more disillusioned than I ever thought possible. We may think that our situations are unique. We have only been given the opportunity to discover even earlier on in life how messed up the system is and how evil we can be to one another as human beings and fellow women- a so called sisterhood that I now know is only comprised of women with f*ckable pussies. I can only hope that you have made it this far and that some censor has not detected either the few swear words present or the militant tone of the post. I usually hate when women share their life stories since it is redundant and usually unproductive but I guess we all need to feel like we are being heard once in a while. I guess I'll let everyone I know who I consider important in my life that my manifesto is printed here and if they care to know who I am than this is all a big part of it. I hope we can all get angry enough that we rile ourselves into action and force ourselves into working for lasting changes to the current system. Bless you all for making it this far (in my post and, more importantly, in life.)

Name:

Emily

Email:

Date:

23 Dec 2002

Comment

Good Lord. Sorry about the length of my post above but damn am I proud of it and the fact that I sat here for two hours to write and rewrite, read and reread it with my vagina buzzing all the while.

Name:

M1

Email:

Date:

23 Dec 2002

Comment

Sorry to be blunt - but the idea that the only people who may have an STD are those who have slept around is incredibly uninformed and downright STUPID!! You don't have to sleep with numerous people you just need to sleep with one - one person that has something to transmit to you. That's all it takes. That one could even be your husband, unless he was a complete virgin who never had any sort of sexual contact with anyone before he got to you. (And let's be for real - how many women can say that about the man they married!!) It doesn't mean anyone did anything sleezy - or intentionally passed a disease on to you. With a virus such as HPV - most men never even knew they had it. If you can't deal with the fact that - if you have had sex with anyone at all - ever - you have put yourself at a certain level of risk - even if it is a very low level. If you con't cope with that information - then you shouldn't have sex at all until you've grown up a bit and accepted the risks and realities of swapping bodily fluids or making genital skin contact with another human being. And yes, before someone posts a retort about using condoms - you still have skin contact when you are using condoms.

Name:

Email:

Date:

23 Dec 2002

Comment

Yes, I would expect someone who sleeps around to call it "swaping bodily fluids". M1-When that person said that vulvodynia is not an STD why did you get so upset and say they were "cranked up about it"? Why are you doubting people who say they Know that they don't have an STD. I have read so many people trying to justify themselves to you saying they know they don't have an STD for one reason or another. There is no reason for people should have to do that. We know what our sexual history is. And we KNOW it's not an STD for us

Name:

Amy

Email:

Date:

23 Dec 2002

Comment

To Emily: I agree with you and think you should be proud of your "manifesto." It's a very well written piece that points out that a woman's vagina, even after the so-called sexual revolution, is still a thing of mystery that most people are too embarrased to talk about. How many of the women who've posted here (including myself) had trouble explaining to their doctor exactly what kind of pain they were having because they were too embarrased to say aloud the parts of the vagina (i.e., clitoris, labia). Anyway, I wanted to say that your entry really provided some food for thought and to tell you to keep up the good fight...

Name:

Email:

Date:

23 Dec 2002

Comment

I believe that people on this site who choose to assumethat vulvodynia is some unknown" form of an STD and then continue to post the same incorrect information aredoing a dis-service to the women who follow this site for support.We all know our sexual history and we know which STD's we have been tested for. So, if a person states that vulvodyniain their own particular case is not an STD, why not justrespect that persons true belief without INSULTS.Stating that vulodynia is an STD complicates thethinking involved here. Suggesting it is an STD, seemsto me to be punishing women who are already at their wit'send. Stop the INSULTING remarks, or if you can't control yourself, please stop posting negativity.

Name:

LM

Email:

Date:

23 Dec 2002

Comment

I agree that we are getting too many debates about STDs/causes. Let's just try to share information and frustrations and not point fingers about who is right or wrong. Everyone is entitled to their own theories, but none should be considered absolute. The fact is - regardless of cause - we all have to deal with this on a daily basis and we need the support of each other. So many others in our lives don't understand the frustration. I am hoping to at least have a halfway comfortable holiday season - just wish I could sit without wanting to cry!! I am trying my best to stay positive.

Name:

M1

Email:

Date:

24 Dec 2002

Comment

OK everyone - chill! First - Let's swap "cranked up" for "standing firmly" that was all that was meant. Second - to the anonymous person who asumes that because I am very realistic about what happens during sex that I've slept around - I'm almost 40 and have had two partners (long-term) in my life. I don't look at sex as "swapping bodily fluids" - but no matter how much "making love" is going on swapping bodily fluid and making genital skin contact is going on as well, whether you want to acknowledge that or not! I personally have been tested more thoroughly than many women here for STDs, including biopsies for HPV (I've posted about that in detail), and blood titer tests for Herpes, along with tests for anything else you can name. I'm not going to go over it again - I posted as just M in books 18 and 19 and M1 her in book 20. I never said this was an STD - but until they know what it really is - we are all selling ourselves short if we let anyone tell us what it is not - unless they can PROVE it - and so far that hasn't happened. If you read these books carefully you will notice, for example, how many women say that they are sure they have no STDs, their doctors told them they have no STDs, but they did "have their cervix scraped for HPV" two years ago, (just an example), They don't even know that that means THEY HAVE BEEN EXPOSED TO AN STD! I am free to post my opinion here as is everyone else - and if some anonymous person wants to attack me for it - whatever! It's still my opinion that for some women here there may be something going on with an STD (HPV) for example that they, and their doctors are not aware of. I, for one, never heard of HPV, Beta-Strep, or spreading Herpes without visible lesions until I started rearching chronic vulvar pain myself. So, don't through stones my anonymous virginal one, at some level, we are all in the same boat. Lighten up - we are all exchanging information here.

Name:

Dee

Email:

Date:

24 Dec 2002

Comment

I just wanted to wish everyone a Happy Holiday season. I know it can be hard to feel good about things with what we have to go through everyday, but I hope that everyone can at least find one thing to be thankful or greatful for. I sit here in pain as I write this but can find many good things to think of. I hope all of you can too and maybe next year there will be a few of you, hopefully most if not all of you, that will be over this problem and can have a true happy holiday with so much to be thankful for. God bless all of you. Tonight when I go to church I will say a prayer for all of us. Please if you are not religious, do not be offended, I just want the best for all of us. Best hopes to all that 2003 will get us there. Love to you all and hand in there.

Name:

Email:

Date:

24 Dec 2002

Comment

To MITake your own advice, you're the one who threw the firststone.

Name:

toshytosay

Email:

Date:

25 Dec 2002

Comment

This has been the worst christmas of my 41 years. I've spent most of the day reading here, or crying, and wishing I were just dead. This first "attacked" me back in 1997, but had gone by the end of that year, with no help from the few doctors i went to who could find nothing wrong. I had a small flare up in 1999, but had been free of it for almost 3 1/2 years. It came back right after Halloween, I had been eating lots of chocolate, had been under stress over a mammogram and subsquent surgery that turned up nothing, and then an episode of sex with my spouse where I had no lubicration. This hell started two days after that. I've seen a new female family doctor twice and she's sending me to a ob/gyn next month, but from all I've been reading, it's like why even bother? They take your money, but you usually get nothing in return. I am full of dispair, hopelessness, I can't be a wife or companion to my spouse or a good mother to my children. The unrelenting misery, the burning and stuff, you can't get away from consumes me. Just getting through the day is a test of endurance. And night brings no relief since I can't sleep. How long will this go on, will it ever go away again? Will I lose another job over this misery? They say it isn't a life threating illness, I think it is, especially since I've read where many women have thought of just ending it, death being the only way to escape the pain. I was watching Dr. Phil the other morning. He had on women who were complaining about the holidays and their families. Would I like to give them a REALITY Test. Anyone of us would gladly trade places with them, and have the chance to enjoy the holidays, feel like decorating, feel like shopping, feel like cooking, instead of lying in a ball somewhere with a cold wet rag between your legs trying to get some relief.I hope some doctors somewhere are working on this, it not only affects the person afflicted with it, but their family too. And that would probably be hundreds of thousands of familys.Thank you for letting me vent here. I have no one to talk to about this, I feel totally alone in the world.

Name:

Lynn

Email:

Date:

26 Dec 2002

Comment

Hi everyone. This message is for a few of you and first of all I just want to say that there are MORE THAN ONE cause of Vulvodynia. Let me just break a few down: Food allergies, yeast, overgrowth of bacteria, nerve damage and it can go on and on. Anyways now this message is for ANONYMOUS, I'm going to make this quick because I don't want to create a long post. Yes I can have painfree sex with my husband and it's all good. I CAN NOT use Aveeno soap nor vanisoap. The vanisoap began to cause me to burn so I stopped using it over a year ago. I now use this soap called " ungragranced BATH AND SHOWER GEL" I've been using that for about 4-5 months now and it works really well. And I was reading your post and just like you, sex helps take the pain away as well. My pain is caused by food so when & if it hurts bad, I have my husband arouse me and that will take away the pain. It's cool! And to KATHY I just want to say that I too lost a lot of weight because I have to watch what I eat now, since I can't eat like I use to, my diet has changed tremendously and I'm very thin and petite. To TRUDIE, I just want you to know that you are not alone. Sometimes I hurt all over my body too, not just my vulva, Sometimes the pain can hit me in my feet and hands. So I know what you mean.Well everyone, I must go now. I will message back another time. God bless us and may we all have less painful days.

Name:

Emily

Email:

eroyce@smith.edu

Date:

26 Dec 2002

Comment

To Toshytosay: I know the despair. It is consuming. Sometimes coming on here too often or even thinking about making another appointment with a doctor makes it worse. But whenever I need a reality check, reading about some of these womens' experiences really makes my 12 years and constant pain pale in comparison. It helps me be grateful for all that I do have, nothing really related to my vagina, but all other life that is not consumed by it. It's all very unfair. It makes you want to scream at anyone who doesn't know. I know that I hate normal people who are oblivious of what some others have to go through. But then you have to take care of yourself and remember that it really doesn't help to hate everything and everyone, no matter how easily this comes. Sometimes it means a little "ignorance is bliss" where you ignore the injustices for awhile and live life as if they didn't exist. Of course there should always be time for being angry, venting, and most importantly using that anger to change things. That's what most my energy is spent on these days. But soon it will be back to school and I will be immersed in a world that doesn't care. So I'll occupy my time with other worldy issues, which sometimes helps more than anything else. So I don't really know what my point is- just that you are justified in all you are feeling but know when to take care of yourself and too and say "enough is enough."

Name:

Julie

Email:

Date:

26 Dec 2002

Comment

I want to give words of encouragement to all the women who have posted despairing messages in the past few days. I once felt the same way -- the first time I was diagnosed, and then a month or two ago, when I had a flare-up. It seems like NO ONE can help you, even the specialists. But it CAN get better. In my case, it was a matter of finding out what was triggering the inflammation in mybody and eliminating it. (Birth control pills were the trigger for me.) In my case, that eliminated 80% of the pain. The other 20% is going away slowly as I take antidepressants, SUMA, and undergo biofeedback. I know a lot of the women who post to the site have much worse cases than I do. But my doctor, who is almost exculsively a vestibulitis specialist, says 95% of his patients ultimately get their pain to a level they can manage without surgery. The remaining 5% have surgery, and only a few of those women don't improve. So I encourage you not to give up -- keep trying different treatments you read about on this site (you don't need to wait for your doctor's permisison in many cases -- that was one of my mistakes early on). Good luck.

Name:

Email:

Date:

26 Dec 2002

Comment

Merry Christmas all!All I want to say is we should all support each other, and not be CATTY. My goodness, I mentioned in one of my posts that it might be an STD, I was just wondering; trying to make some sense out of this darn thing! It seemed to offend some "ladies" on here, I am not saying anyone is sleazy. But my gosh ladies, we don't all find Mr. Right at 20, and you so called righteous women should not judge. Judging another human being is not right. And remember, as someone else posted, you can get an STD even if you have only had ONE partner. So again, to some of you "ladies" do not be so darn naive. How do you know, I mean really know, that your husband hasn't had 30 partners before you??? So GROW UP. This is the real world, not "Little House on the Prairie"Peace. :) Happy New Year to all....... and let's be kind to one another!

Name:

Joanna

Email:

Joannkwiecinski@hotmail.com

Date:

26 Dec 2002

Comment

I have been suffering from something that is causing burning or irritaion in various vulvar locations on an almost daily basis for over a year. I have been to several doctors who have prescribed several creams (yeast, estrogen, cortisteroids, ect..) and have taken several std tests (sometimes up to seven) and because my doctor can't or is unwiling to try to find an organic cause I have been referred to a therapist. I know my pain is real and I believe I may have vulvodynia, brought on by my first yeast infection over a year ago.I am now trying to live with the burning and irritation which is always present because I refuse to go to another doctor and be told there is nothing wrong with me. Can anyone tell me if the irriation or burning associated with vulvodynia can move from one side of vulva or from one part of vulva to another on a hourly or daily basis? It seems just when the burning stops temporarily in one area it will begin in another. Does this sound like vulvodynia or am I looking in the wrong place for an answer.Please help.

Name:

lbkreter@aol.com

Email:

lbkreter@aol.com

Date:

26 Dec 2002

Comment

lbkreter@aol.com

Name:

M1

Email:

Date:

27 Dec 2002

Comment

Joanna - Sometimes I feel as though I notice a similar sensation. I've really tried to pay attention lately and I do think It has to do with my own sitting positions, standing, and general movement - along with how much contact I have with my clothing (tight contact if I sit with my legs crossed causes specific irritation on the right lide, but that is the direction I cross my legs when I do.) One suggestion would be to try and pay attention to what you are doing, what position you are in and if that may cause irritation to the spot where you are experiencing the sensation.

Name:

Lynn

Email:

Date:

27 Dec 2002

Comment

Hi Brooke. I had vestibulits but I had surgery to remove the glands. I had surgery 2 years ago, so no more pain there. Anyways, I have problem with my nerves all the time but I only have a problem with them when I eat certain foods. Anyhow I went several PCPs to get a referrel to see a neurologist about this. It was hard to get the referrel because kept being told by different doctor's that food can not cause my nerves to act up. Dr. Glazier even told me that on the phone once. Anyways but I know it does because I can feel my nerves tingling and sometimes create pain when i eat certain foods. But I finally got the referrel I wanted and when I went to the neurologist, he too told me that food can not cause my nerves to tingle or hurt. But I know my body! Then he didn't run any test on me, he just asked me some questions about my life history, then he had a couple tools that that he tapped on me to see if I would get any tingling sensations -which i didn't (of course because I wasn't eating any food). Anyways he told me that I have no problems with my nerves, that i was stressing and then he gave me a prescription for antidpresents. I took them for 3 weeks but only so they could help me fall asleep at night. But I'm not taking them anymore. I don't want to rely on any medications! i just rather rely on my diet and my faith to feel good about myself. Anyways Doctor's don't know everything! They think they do, but they don'!!!

Name:

Nanci

Email:

brat@itis.com

Date:

28 Dec 2002

Comment

Hi all, I haven't posted here in a really long time and I've been doing a lot of experimenting with my health. I have had vulvodynia for 25 years. I had major reconstructive surgery for endometriosis in 1985. I know now that the two are related but the doctors have not agreed. Through all the years and all the doctors, acupucturist and gynecologists I have learned. I listened to everything they told me but I had to put every thing together myself. My condition is a skin condition. It is related to eczema. It is caused by a hormonal imbalance. That imbalance is caused by, believe it or not, STRESS. What helps? Relorcore by GNC. It relieves excess cortisol in the system. Also Sam-E by nature made. It relieves pain due to inflamation and helps regulate moods. Yoga helps me overall and daily cardio excercise is essential. Since the stress causes excess yeast in my system, I avoid alcohol, bad carbs and sugar. I eat meats, eggs, olive oil and vegetables. I limit starchy veggies. I have a very limited amount of natural sweets. I use stevia for a sweetner. After reading these posts, I plan to try the SUMA found at GNC. Some products that work for my relief are Astroglide lubricant and Aveeno soap. I insert one UAS labs chewable acidopholis tablet into my vagina each morning. (It appears that I am oversensitive to any yeast in my system. I had years and years of diet induced yeast infections before the onset of vulvodynia.) After sex, I insert one gel capsule filled with boric acid. With this lifestyle (which I am totally used to since its been about 2 years now,) I am able to spend most days totally free of pain and itching. Sex is comfortable and I can do it about 2 times per week. I still need a few days of recovery time after each occurrance. This is the best I've been in 25 years. I am still learning but I can't rely on the doctors to cure me. My condition only really matters to me. I am the one with all the knowledge about myself. The answers to my problems all lie within me. I just have to find them. Don't discount natural cures because the medical profession tends to downplay their significance. They just don't understand them yet. If the medicines of the East and West counld come together, we may be closer to a cure for this horrible condition. We need this website in order to stay informed. My doctor wanted me to have surgery. Now she sees how much better I am and supports what I am doing. I used to have tearing, bleeding and red raised bumbs on my vestibule. Since my self-treatments, I no longer have this appearance. I still occassionallly get a little sore after sex. She wants me to have a biopsy for lichen sclorosis but I won't do it because the only treatment is steriods and THEY DON"T WORK FOR ME. I feel that if I have to endure a cut in that area, I will not be able to get back to where I am now and I can't risk that. I have tried many cures, creams and pills but I'm not going to list those that haven't helped me here. Since everyone's condition is different, I can't say that they wouldn't help you. All I can say is know yourself and keep searching. There is an answer for you. When you find it you will know. May the source be with all of you in your efforts. Good luck. Nanci

Name:

confused

Email:

Date:

29 Dec 2002

Comment

I was diagnosed with vestibulitis a few weeks ago. Though I'm on the pill, being on or off made little difference to me. I know that everyone's case is different and that everyone responds differently to treatments, but I just had a question. My doctor prescribed a topical cream for me, doxepin hydrochloride cream or something. I've been using it for about two weeks now, but I'm not really sure what I'm supposed to be expecting to happen if it is getting better that is. The past few days, it has actually been really sore when I've applied the cream, it may be because I have my period but I am not sure. But I was wondering if there are others out there who have used creams and gotten better or worse, and what I should be expecting...any insight would help!Thanks

Name:

Email:

Date:

30 Dec 2002

Comment

Cream bases often irritate vestibulitis; my doctor always prescribes ointments.

Name:

http://www.reddINK.com

Email:

theautomann@msn.com

Date:

31 Dec 2002

Comment

I'm submitting this for a reason: Being head-injured, coma almost three weeks, find out what I found out when I went to Heaven. You'll be very surprised and enlightened by the Trinity's magnificent, mellifluous knowledge: With such a price-tag on our souls, human beings are clearly precious beyond diamonds; Declarations can never describe how effusively colorful and illuminating Upstairs was... and is forever. Sign the GB, too. God Bless You with discernment. Tell others about my killer URL -b9, the Catalyst4Christ

Name:

Anne Hillebrand, Orlando, FL USA

Email:

annehillebrand@att.net

Date:

01 Jan 2003

Comment

Please read:http://www.fibrofix.homestead.comNot a joke. Nothing for sale. Gives all details of treatment I have been using since October, 2000 to get complete relief from severe Fibromyalgia. Treatment is 3 prescription meds (no pain pills), one over the counter product, and simple lifestyle changes.Please help us pass the word along. We accept no donations.Sincerely,Anne HillebrandOrlando, FL1st of 5,000,000By the grace of my almighty God

Name:

kim

Email:

To M1

Date:

01 Jan 2003

Comment

I'm curious to know if the interferon shots you have a few months back did anything for you? To make a long story short, I have had my problem since Sept 97, in Dec 98 I had a biopsy done coming back positive for HPV(subclinical-my symptoms were burning w/intercourse).The Dr. treated me w/Aldara cream for 7 wks, and I was totally pain free. About a year later(oct 99)I had an abnormal pap smear and soon after the pain started to come back and gradually got worse. I am unable to use the Aldara cream again b/c it burns so much it kepts me up at night.(I am assuming b/c the skin became thinner from pregnancy/breastfeeding from 2000-02).Now I feel my only option is to try the interferon shots, if I can find a Dr. who will do it. It's very hard to find information on this. I would appreciate a response from anyone. Thanks.

Name:

lia

Email:

limay@att.net

Date:

01 Jan 2003

Comment

Hi. I've been reading recent posts and wanted to add some things. To EMILY who asked why you would need a machine for biofeedback, the idea is to stabilize the muscle, so... you insert the sensor and use the visual display on the machine to be sure you are stabilizing. The machine has a visual display with letter A-M, I think. I try to clench so that I stay on one "letter." I've been doing it for 4 months and seeing some improvement. Regarding TRICYCLIC ANTIDEPRESSANTS, I'm confused. I keep hearing that low doses are used for pain, but my doc did blood levels to get me into the "therapeutic range". It turned out that I was a "rapid metabolizer" of tricyclics. It took me to 300 mg of imipramine to get into the range. The doctor was pretty surprised. I think the imipramine is helping, too. Regarding SEXUAL SIDE EFFECTS on meds... I have no trouble on tricyclics, but SSRI's and Effexor do adversely effect my ability to orgasm. I take 37.5 mg effexor and my doctor believes if I scrapped the imipramine and went higher on the effexor I'd get better results. I feel like I'd be trading one problem for another, though. If my pain were bad, I'd have to do it, but the imipramine and biofeedback have got it way down. I'm also taking DHEA because my hormone level tested low. I've been on it a couple weeks. My doc says it could take months to see results.

Name:

Marisa

Email:

magongora@hotmail.com

Date:

01 Jan 2003

Comment

It's been ahrd to come to this website lately because everybody seems to be catty and practically attacking each other. We're supposed to provide support and helpful information for each other. Could everybody just chill out a little and not get so upset with each other? We should post what we know about our own specific situations and treatments that have worked, and people can take or leave the information, hopefully without judgement. EMILY: I am so sorry you are going through so much. Hang in there. It took me 10 years to find a doctor who could diagnose me and treat me with respect. You will find a doctor who will help you. At least you know what you have and that it's not all psychological. That's what I thought all along and kept trying to cure myself with therapy. However, I will say that therapy now is helping me come to terms with my sexuality and how not always having sex affects me and my relationships, and my image of myself. I'm not trying to say you're crazy (I'm a school social worker, so I strongly support everyone participating in therapy), just that what we're all going through is really tough and we need support. I looked through my health insurance book for sex therapists. I found a great lady and I went to her for several years. I took a hiatus and now I'm seeing her again. I've shown her the books about vulvodynia and educating her on my condition so that she can help me through this. Please consider seeing a therapist because it's hard for anyone in our friends and family to relate. They don't want to talk about sex and pain candidly and they don't want to know we're suffering. Sometimes they're the ones who tell us we're imagining it, that it's psychological. Hang in there, Emily, it will get better.

Name:

Maria Eva

Email:

evadlin@mixmail.com

Date:

01 Jan 2003

Comment

Maybe this year we'll be better...OJALA CARAJO!!!!Happy new year!!!

Name:

Marilyn

Email:

Date:

01 Jan 2003

Comment

I was diagnosed with lichen sclerosis. I agree that it is related to a hormone and acidic condition. I am 47 and for sure going through menapousal symptoms. I have never been plagued with yeast infections. I use all natural herbs so I am taking a combination of Dong Qiau, Black Cohosh and a few other estrogenic herbs. I also use the progesterone cream.My problem started just with a small amount of itching but now it is a chronic itch. The itching then causes irritation to make it sore and raw. I have not had the pain that everyone else has described. Can you tell me if there is any difference in my condition than theirs. You talked about the urine which I was very glad to learn that because it does seem to help when I wash after. I am going to start the vitamin E tomorrow. i

Name:

Marilyn

Email:

Date:

02 Jan 2003

Comment

I was diagnosed with lichen sclerosis. I agree that it is related to a hormone and acidic condition. I am 47 and for sure going through menapousal symptoms. I have never been plagued with yeast infections. I use all natural herbs so I am taking a combination of Dong Qiau, Black Cohosh and a few other estrogenic herbs. I also use the progesterone cream.My problem started just with a small amount of itching but now it is a chronic itch. The itching then causes irritation to make it sore and raw. I have not had the pain that everyone else has described. Can you tell me if there is any difference in my condition than theirs. You talked about the urine which I was very glad to learn that because it does seem to help when I wash after. I am going to start the vitamin E tomorrow. i

Name:

Rachel

Email:

rknap77@aol.com

Date:

02 Jan 2003

Comment

Has anyone heard of any connection between vulvadynia and possible MS?

Name:

Dee

Email:

Date:

02 Jan 2003

Comment

Hi Ladies. I'm going for an MRI tonight. The doctor wants tosee if I may have a pinched nerve. My problem is when I sit, wear jeans and sit, and the day after you know what. I just want to sleep because I'm so sore and swollen. Truthfully I think it's the glands,but at least having this MRI will either find something or eliminate another possiblity. I'm scared to death that it may find something else like a tumor or something because I get this strange lower back pain in one spot. I guess we'll see. I just wish they could tell you something about the results right after you have it done and not make you wait until the doctor calls. I guess what will be, will be. I jst needed to vent a little. Happy New Year everyone and I hope it's the year for most of you to find a cure for this. Best Wishes to all.

Name:

From Sue to Marilyn

Email:

Date:

02 Jan 2003

Comment

Hi Marilyn: I was diagnosed with LS in my early 30's and used Testosterone ointment to treat it. Years later, I saw a specialist who said I had Vulvodynia and not LS. Now I use Estrace cream at night and Emu Oil in the am. Emu Oil is an anti-inflammatory that I buy off the internet. It's less goopy than vitamin e oil. I also take black cohosh. My day to day burning and pain is gone, but intercourse is still very painful during and afterwards for several days. Good luck to you.

Name:

Lynn

Email:

Date:

02 Jan 2003

Comment

Hi everyone. Can someone please explain to me what is the "GENE" what kind of disease is it, what are the symptoms? And what is the "SUMA" for? I saw it in the GNC yesterday and the man told me that it's suppose to support your immune system. I'd like to here from any of you who has the GENE. I may have it and don't even know. So are one of the symptoms burning when eat certain foods?? I may need to ask my doctor about testing me for that. I'd like to hear anyone's comments. Thank you!

Name:

Lynn

Email:

Date:

02 Jan 2003

Comment

And there's something else I'd like to know. If I do have the GENE can I still get pregnant?? Please let me know. Thank you!

Name:

Lynn

Email:

Date:

02 Jan 2003

Comment

I called me Dr. Lab to ask if they test for "THE GENE" she wanted to know what gene was I talking about and I said that it has to do with inflamation inside from eating certain foods. she said she's never heard of that, so now what???? now what do I do?? I swear, this is ridiculous!!! I know i can just go buy some SUMA

Name:

Lynn

Email:

Date:

02 Jan 2003

Comment

I called me Dr. Lab to ask if they test for "THE GENE" she wanted to know what gene was I talking about and I said that it has to do with inflamation inside from eating certain foods. she said she's never heard of that, so now what???? now what do I do?? I swear, this is ridiculous!!! I know i can just go buy some SUMA from GNC, but I don't want to waist my money if i don't have THE GENE. Plus if i do have THE GENE, I'd like to know about it!!! Is there anyone of you live in AZ that can refer me to a Dr that can test for THE GENE???? Please let me know. Thanks!!

Name:

Jill

Email:

Date:

02 Jan 2003

Comment

EMILY: What treatments have you tried? Any medications? Have you seen a specialist? I don't know that you have to go to a physical therapist (although that is obviously preferable). But if you are going to try pt for vulvodynia you need to somehow learn whether you are getting a sufficient contraction and relaxation- it's 10 seconds on, 10 off, concentrating on relaxation. You should do this for 10 or 20 minutes two times a day (so 30-60 contractions). Do it while you are not doing anything else. Look at a watch. Pull in as hard as you can. I wish you the best.

Name:

stef

Email:

Date:

02 Jan 2003

Comment

Hi, does anyone have problems with yeast infections? I have a yeast infection for over a month now and i cant seem to get rid of it. Does anyone know if yeast infections get worse because u have VV? And if anyone can please tell me how to get rid of the yeast infection. I have been using creams, acidopholis, and no sugar. If anyone has any other Ideas, please let me know. Thanks :)

Name:

asister2

Email:

Date:

02 Jan 2003

Comment

Dear TooShyToSay,You know who this is. Your depair breaks my heart, but I understand where you are coming from as I have suffered the agony too as you know. Luckily for me, all I feel 'there' is a dull sensation these days, fire free for years now, and now able to go about my day, no longer in a dibilatated state. I love you sis and wish I could take away your suffering. Please hang in there and hopefully some relief will eventually come your way, possibly from fellow sufferers on this site. P.S. For my own personal input, my years of agony finally subsided eventually after treatment for a raging yeast infection brought on by overdoses of powerful antibiotics for a bladder infection I never had. Seems there was one other infection that was treated too. And after years of 'the fire', so far have not had a recurrence since putting an end to ANY mouth fluid coming in contact with my private area. Whether I had vulvodynia or not, I don't know.

Name:

Lynn

Email:

Date:

03 Jan 2003

Comment

Hi STEF, I sometimes have CANDIDA yeast infection. It's the VERY HARD and stubborn yeast to get rid of. I usually can tell when I have another infection and so then I just go refill my priscription. The Dr. prescribes me "KETOCONAZOLE" generic for NIZOROL. It's 200mg and is a 21 day supply. It works for me!! You should try getting a prescription. To 2SHYTOSAY. I just want you to know that you sounded like me years ago. I too wanted to just KILL MYSELF because thayt's seems like the ONLY way to escape this horrible disease!! But the only thing that kept me alive was my husband's prayers, his faith and my child. As much as I though about suicide, I thought about how my family would be so hurt if I left them alone. I always felt that I could be of no service to my husband, my child could not have a fun, cool mom because I was always in too much pain to enjoy life. But then as I the months and years went on, I just learned a lot about this condition and I learned that it's the foods that cause the pain. Food is the culprit! I use to think and feel that I was ABNORMAL. But then I realized that there's nothing wrong with me, there's nothing wrong with my vulva and I regret having that surgery because as I look back, I just don't think I needed it. Food is the culprit!! Being alergic to food is what cause my pain so I just learned how to stay away from bad foods. Sometimes I cheat, but for the most part, I do good. Anyways bless us all and I hope that each and every one of you (us) gets better!! To ASISTER2. Are you African American??? There's not too many of us on this site. I was just curious. As far as I know, it's me and another girl.

Name:

Emily

Email:

eroyce@smith.edu

Date:

03 Jan 2003

Comment

To Lia: About the biofeedback- does the focus on stabilizing mean that you wouldn't clench the muscles as hard as you could because you couldn't hold it for the full 10 seconds? If so, it makes sense to have the sensor so that you can stabilize. If the goal is to squeeze as hard as possible for as much of the 10 seconds as possible then it wouldn't make sense because if I'm squeezing as hard as I can then I can't squeeze any harder so what's the use in knowing how my squeezing ability rates. Is the total tab of $1800 (not including travel) for Dr. Glazer the going rate for other biofeedback specialists? I'm fairly certain it will be the treatment for me but I know I will just live with the increasing pain over paying that kind of money.To Jill: Back when I thought that if I could teach myself how to orgasm during sex then it could be worth the pain I bought a book on womens' orgasms. I was to the step of doing kegel exercises for 15min. twice a day. They gave me a weird feeling I couldn't describe. Then I read more and it said that some women report a "nervous" feeling and that feeling indicated a lack of tone in the pelvic floor muscles which could not be treated with kegel exercises, but instead had to be examined and treated by a gynocologist. It's the worse nervous feeling. Like acapella at the talent show and suddenly you forget all of your lines and the crowd is staring at you and you're so nervous you pee and they see and laugh and when you go to run off the stage you trip and they laugh even louder. Kind of like that. Plus it hurts, and makes the pain worse. That's why I want to get the test to see if I could really benefit from biofeedback and if so I would be willing to withstand any kind of pain if I thought that it would bring me some relief in the long run.Marisa: I was seeing a therapist long before I knew there was a problem with my vagina. I talk about the effects of vulvodynia with my current counselor and how I feel silly letting it upset me so much when I have so many other things going on in my life that others deem far more "devastating." She is surprisingly understanding, is always on my side (everyone needs that once in a while), and usually is more angered by things than I am which makes me realize just how unfair things are. She keeps my blood flowing. Otherwise maybe I would just give up. Sometimes it feels better to be furious with the world than it does to give up on it completely. Thank you for the concern and advice.

Name:

M1

Email:

medusa_m5@hotmail.com

Date:

03 Jan 2003

Comment

Kim: I would say that the interferon gave me some improvement - but definately not a cure. It has provided complete relief for others that I have spoken with. Why don't you e-mail me directly with specific questions. To the person who is asking about THE GENE - There is lost of information about it at the beginning of this book and in the last book (including the exact name of the gene - which you cannot get tested for at regular labs such as Quest Diagnostics or Smith Kline). I do think you have to see Dr. Ledger in NYC for the test. Maybe you can call his office for information. You should check it out - you may find it helpful.

Name:

Julie

Email:

Date:

03 Jan 2003

Comment

I just started reading a great book that touches on hormonal connections to vulvodynia (as well as intercitial cstitis and fibromyalgia) -- Screaming to by Heard by Elizabeth Vliet. Since birth control pills seemed to trigger my vestibulitis (especially high-progestin ones), I feel validated reading it. Anyone else who suspects a hormonal connection might want to try it. The author has a clinic in Texas, too, and takes appointments.

Name:

S1.

Email:

Date:

03 Jan 2003

Comment

For all the women who had this condition appear like a thief in the night, I would like us to all make a New Years resolution to get our hormone levels checked upon our next doctors visit. I too am reading Dr. Vliet's book. I had my hormones tested last month on day 20 of my cycle. My progesterone was 6.35 NG/ML. My estradiol was 74 PG/ML. My testosterone was 18 NG/DL. Dr. Vliet believes a woman should have an estradiol level of 300 pg/ml at Day 20. The vulvodynia patient she describes in her book had a level of 156 pg/ml on day 20. My level was half of hers!!!!!! Oh my god, how I hope this may provide a clue as to why I can't seem to shake this condition, even with healthy dieting, exercise and an understanding husband who has been there for me. Check out pages 316 to 319 of Dr. Vliet's book. Now that my focus has shifted from yeast to hormones, I think I may be coming closer to an understanding of what is going on with my body. I want to add that my condition may be irreversable unlike some fortunate ladies who stopped their birth control pills and returned to normal. You see, I had a tubal ligation when I was 31. We had our family, and I didn't want anymore children. My mother had her tubes tied back in '69 and hasn't been plagued with these symptoms, so I failed to make a connection. I was ASSURED by the gyn. who performed the surgury there were ABSOLUTELY NO SIDE EFFECTS. Most gyns. will stick to this assertion to this day. However, in Dec. I conducted a search on the Internet. There, amongst all the websites claiming the safety of this procedure was a website devoted to informing women of the hazards of tubal ligation. Declining hormone levels is one of the possible side effects suffered by the contributors of this website. I FELT LIKE I HAD BEEN PUNCHED IN THE STOMACH AS I READ ON...Now, I must go on. What was done is done, and I can't go back and erase the past. Since my surgery I have experienced many of the symptoms Dr. Vliet lists on the inside jacket of her book. Loss of sex drive, brain fog, weight gain, loss of energy, restless sleep, PALPITATIONS, joint pains, allergies, VULVODYNIA. Before the vulvodynia appeared in May of 2000, I couldn't figure out why I felt so weird. I wore a holter meter for my heart in spring of '99 because the palpitaions were freaking me out. NO DOCTOR I saw suggested hormones as a cause, even when I mentioned I felt my symptoms flare around the time of my ovulation. "It's just stress", they'd reply. I knew I wasn't like my old self, and it caused me to wonder what the hell was wrong with me. I'm seeing my new gyn next Weds., and although the typical HMO appointment only lasts around 15min., I hope to discuss these findings with her. If we can't rely on our doctors to order these tests, let's request them, INSIST ON THEM. We owe it to ourselves to know our pain and mental anguish is worth validating with legitimate blood tests. Also, request a copy of your bloodwork. Don't trust the doctors office when they phone (IF they phone) and tell you everything is at normal levels. According to the range on my paperwork, "normal" levels of estradiol range from 33-221 in the luteal stage, 50-480 in the midcycle stage--hello--postmenopausal women are listed as having levels lower than 55, and they think it's normal for a premenopausal woman to have the same levels? Well, maybe for some women--some very lucky women--they feel perfectly normal at these levels. But I bet if we started to compare our levels, there's a big possibility we may be on to something. God knows we can't rely on the NIH to fund research into this legitimate disorder that cuts to the very core of a woman's female-ness. PLEASE LADIES, GET YOUR LEVELS CHECKED AND POST YOUR RESULTS HERE.

Name:

S1.

Email:

Date:

03 Jan 2003

Comment

For all the women who had this condition appear like a thief in the night, I would like us to all make a New Years resolution to get our hormone levels checked upon our next doctors visit. I too am reading Dr. Vliet's book. I had my hormones tested last month on day 20 of my cycle. My progesterone was 6.35 NG/ML. My estradiol was 74 PG/ML. My testosterone was 18 NG/DL. Dr. Vliet believes a woman should have an estradiol level of 300 pg/ml at Day 20. The vulvodynia patient she describes in her book had a level of 156 pg/ml on day 20. My level was half of hers!!!!!! Oh my god, how I hope this may provide a clue as to why I can't seem to shake this condition, even with healthy dieting, exercise and an understanding husband who has been there for me. Check out pages 316 to 319 of Dr. Vliet's book. Now that my focus has shifted from yeast to hormones, I think I may be coming closer to an understanding of what is going on with my body. I want to add that my condition may be irreversable unlike some fortunate ladies who stopped their birth control pills and returned to normal. You see, I had a tubal ligation when I was 31. We had our family, and I didn't want anymore children. My mother had her tubes tied back in '69 and hasn't been plagued with these symptoms, so I failed to make a connection. I was ASSURED by the gyn. who performed the surgury there were ABSOLUTELY NO SIDE EFFECTS. Most gyns. will stick to this assertion to this day. However, in Dec. I conducted a search on the Internet. There, amongst all the websites claiming the safety of this procedure was a website devoted to informing women of the hazards of tubal ligation. Declining hormone levels is one of the possible side effects suffered by the contributors of this website. I FELT LIKE I HAD BEEN PUNCHED IN THE STOMACH AS I READ ON...Now, I must go on. What was done is done, and I can't go back and erase the past. Since my surgery I have experienced many of the symptoms Dr. Vliet lists on the inside jacket of her book. Loss of sex drive, brain fog, weight gain, loss of energy, restless sleep, PALPITATIONS, joint pains, allergies, VULVODYNIA. Before the vulvodynia appeared in May of 2000, I couldn't figure out why I felt so weird. I wore a holter meter for my heart in spring of '99 because the palpitaions were freaking me out. NO DOCTOR I saw suggested hormones as a cause, even when I mentioned I felt my symptoms flare around the time of my ovulation. "It's just stress", they'd reply. I knew I wasn't like my old self, and it caused me to wonder what the hell was wrong with me. I'm seeing my new gyn next Weds., and although the typical HMO appointment only lasts around 15min., I hope to discuss these findings with her. If we can't rely on our doctors to order these tests, let's request them, INSIST ON THEM. We owe it to ourselves to know our pain and mental anguish is worth validating with legitimate blood tests. Also, request a copy of your bloodwork. Don't trust the doctors office when they phone (IF they phone) and tell you everything is at normal levels. According to the range on my paperwork, "normal" levels of estradiol range from 33-221 in the luteal stage, 50-480 in the midcycle stage--hello--postmenopausal women are listed as having levels lower than 55, and they think it's normal for a premenopausal woman to have the same levels? Well, maybe for some women--some very lucky women--they feel perfectly normal at these levels. But I bet if we started to compare our levels, there's a big possibility we may be on to something. God knows we can't rely on the NIH to fund research into this legitimate disorder that cuts to the very core of a woman's female-ness. PLEASE LADIES, GET YOUR LEVELS CHECKED AND POST YOUR RESULTS HERE.

Name:

Stef

Email:

Date:

03 Jan 2003

Comment

thank u for answering. Can i be misdiagnosing myself...I feel like i have a yeast infection on the outside, i am all red and itchy..but at the opening of my vagina, im not red at all!! Is it possible that its not a yeast infection, or maybe i just have a constant yeast infection on the outside? thanks

Name:

LIZ MACK

Email:

Date:

03 Jan 2003

Comment

I HAVEN'T POSTED IN AWHILE. I TOO HAVE VESTIBULITIS AND I HAD SURGERY IN MAY TO REMOVE A BARTHOLIN'S CYST AND GLAND, AND VESTIBULECTOMY(FOR THE THIRD TIME). MY BEST ADVICE AFTER 3 SURGERIES TO CORRECT THE SKIN THAT KEEPS RIPPING WITH SEX IS TO " N E V E R" EVER HAVE SURGERY UNLESS ABSOLUTELY NECESSARY. I HAVE SUFFERED FOR 18 YEARS WITH THIS CONDITION AND I DON'T KNOW WHY I CONTINUE TO GET TALKED INTO GOING THROUGH SURGERY ONE MORE TIME. THE SKIN JUST DOESN'T EVER GET PLIABLE AGAIN. I USE ESTROGEN CREAM MANY TIMES A DAY AND I AM USING DILATORS TO STRETCH THE SCARRED SKIN. I HAVE ONLY HAD SEX WITH MY HUSBAND (OF 28 YEARS) 2 TIMES IN 2002! IT'S NOT FAIR, IT'S PAINFUL, IT'S FRUSTRATING, AND I BELIEVE IT IS NOT CORRECTABLE. I AM REALLY A VERY POSITIVE PERSON AND I FEEL I AM JUST FINALLY BEING REALISTIC. THINK REALLY HARD BEFORE YOU LET A DOCTOR CUT ON YOU. YOU ARE NEVER THE SAME AGAIN. I REALIZE EVERYONE HEALS DIFFERENTLY, BUT THIS CONDITION CAUSES SUCH COMPLICATIONS THAT IT SEEMS ONE SYMPTOM MIGHT GET CORRECTED, BUT YOU GAIN ANOTHER ONE IN ITS PLACE. I BELIEVE GOD DOESN'T GIVE US MORE THAN WE CAN HANDLE, SO I AM TO THE POINT OF JUST SAYING THIS IS MY LOT IN LIFE AND WE (MY HUSBAND AND I) WILL HAVE TO DO OUR BEST TO WORK AROUND IT. GOOD LUCK TO ALL YOU OUT THERE. IT ISN'T A FUN THING TO HAVE.

Name:

AS

Email:

Date:

03 Jan 2003

Comment

Thanks for the comment on the surgery. I was actually going to look into that more. Also, I had read earlier that some people have tried capsaicin. It makes sense because it depletes substance P in nerves which causes pain. So I decided to use. It was the most excruciating pain I have ever felt. So if anyone is considering this, I don't reccomend it. In theory, the things that should work are Tricyclic antidepressants and neurontin. But I don't know if these things work in reality. I am going to be a pharmacist in a few months, and I work in hospitals and pharmacies and I have never heard of this condition (besides the fact that I have it). Shouldn't more medical or health care schools talk about it, especially since so many women have the condition. Anyways, I'm sure most of you already know, but you can actually go to www.nva.org and get a lot of good information. Bye.

Name:

M1

Email:

Date:

04 Jan 2003

Comment

A QUESTION FOR S1 - Did you have blood work done to test your hormones or oral swab tests? Would you please list all the hormones for which you had your levels checked. I've been checked, but it is always only for estrogen. Since your now know that your levels are so low - what will you do?

Name:

AJ

Email:

T o L i z M a c k

Date:

04 Jan 2003

Comment

Please stop posting all in caps! It is very difficult to read and against the rules of netiquette. Thank you.

Name:

Reebi

Email:

atelier27@aol.com

Date:

04 Jan 2003

Comment

Hello all,This is my first post. I developed VV about a year ago, although I had some mild symptoms of it many years ago--they fortunately went away. I have what they think is IC or at least some kind of urinary dysfunction and a pelvic floor dysfunction causing (or creating nerve pain). I have been scouring the research and web sites looking for info and leads for treatment, but it is contradictary and confusing. I think for me, like many of you, mine is a multifaceted problem. I have a good gyn in Philadelphia, Susan Kellog-Spadt who knows a lot about this stuff, she is just a little harried sometimes and I have to force her to slow down when dealing with me. I have only seen her twice. I have an obsessive need to know all that I can about this. Since we are posting to this forum most of us still have problems. I am looking for women who have been cured, I mean 100% cured from this thing. Anyone know them and how they can be contacted? Perhaps previous participants of the disscussion board who you might have contact with? Forgive me if this stuff has been asked before. I have poured thru many of the previous guestbooks, but not all.I had so many things going on at the time of my onset it is driving me crazy trying to figure it out and I have lots of weirdo symptoms in addition to the vestibulitis (abdominal pain/bloat, rectal spasms, hip/back pain/bladder pain, frequency, tingling in vulva and buttocks/lower back etc).I was taking natural hormones to try to regulate my erratic periods for about 5 months prior to onset, I had a new sexual partner (I'm gay, not that that makes much difference, except that it is a little annoying to me that the gauge of severity for this illness in the medical profession is pain on intercourse, trust me I can't have sex either), I used a different lubricant and whammo the yeast infection from hell. I used monostat 3 and the external creme that came with it--big mistake. I got a nasty rash that I thought for sure must be herpes--it wasn't. Whether the rash, swelling pain was from the yeast or the creme, I don't know, probably both.I have gone thru a litany of treatments for the yeast and while I think I no longer have it (cultures negative), here I am.I couldn't tolerate elavil. I have been on estrace and atropine for about 3 months and while the skin elasticity has gotten better, everything else is the same. I am willing to try most things if they seem reasonable, but I don't want to do too many things at once so I know what's helping.I am starting PT for the pelvic floor stuff. I'm a little hesitant about any vast dietary changes, because I don't think a diet related problem would have such a sudden onset, and I have a hard time believing that leafy green vegetables are bad for me, but that's me. It's late and I just wanted to talk to others who understand. Saying some prayers for you...and if you could say some for me too, thanks

Name:

M1

Email:

medusa_m5@hotmail.com

Date:

05 Jan 2003

Comment

Hi Reebi - I've seen Susan Spadt on and off for two years now. I do like her and her willingness to try just about anything I ask for - but I must say I am no better either. Unfortunately, it seems that anyone who has actually recovered 100% doesn't post here anymore. I did PT at Graduate as well, but after a few weeks, even the Therapist said that she didn't think that that was my problem. If is already hasn't been done - ask to have your muscle tone checked with this little machine they have first. Hang in there!

Name:

suzanne

Email:

birds68@netscape.com

Date:

05 Jan 2003

Comment

I was diagnosed w/ vulvar vestibulitis four years ago. I have seen about 11 doctors that each diagnosed me with the same crap that there was no cure and use the xylocaine 2%. I have spent about 4 thousand dollars over the last 4 years on docs that claim to help. They put me on everything- diflucan 200mg for 1 month, herpes medicine, estrogen creams, boric acid etc. I live in Brooklyn and have seen the all the posh doctors of NYC that do not take my self-paid insurance. I prayed for a miracle last year. In May my friend recommended to to her doc, he prescribed amoxicillin 600mg for one month. He said he had seen it before and could cure me. I thought bullshit but gave it a go. I month later I was cured. Yes I still have chronic yeast infections and of course recieved a wicked one after all that amox. But AVC cream and Mycolog cream both by perscripion works. I suffered and read all the shit. I suffered teribly from the pain and mental stuff that goes along. I spent sooo much $ on the dr.'s. And god answered my prayers when i believed it was incurable as the11 docs told me

Name:

reebi

Email:

atelier27@aol.com

Date:

05 Jan 2003

Comment

Hi MI,Thanks for the info on Susan. I am not counting on any miracles from her, but she is far better than my other gyn, who knew what vestibulitis was--a little, but was a bossy so and so. She is about to set me on a course of injections, not interferion, but a homeopathic substance called Traumeel. She said I should have no side effects and the needles are thin like acupunture needles. Have you tried that? Do you live in the Philly area? Have you seen any other local docs who you liked?

Name:

reebi

Email:

atelier27@aol.com

Date:

05 Jan 2003

Comment

Suzanne, Thank you so much for your post. I like others think there isn't any one thing that causes it and for me I believe it is multifaceted, particularily because of the nerve pain in my hip. I do however harbor the suspicion that there is a bacterial componant to this--for me. I have symptoms of IC and mt gyn thinks so too, even though I haven't felt the need to go thru the bullshit of a urologists painful procedures to tell me what I know already. I know this is a Vulvodynia board, but IC is often related. I am in the process of getting samples tested by Dr. Paul Fagazzotto. He believes IC is bacterial in nature, that the bacteria is "layered" and difficult to culture for and is a gram positive strain, which isn't part of what they include in a standard culture, because it grows in a different medium! His treatement is long term antibiotics with yeast protocols, some women are on antibiotics for 6 months to 1 1/2 years as new bacterias become visible from the layering. I don't know what to believe, but the only people out there who say they have been cured of it have used his or a similar treatment. The IC started at the same time as the VV for me and with a combo yeast/double UTI. From what I understand Enteroccus and yeast like to cohabitate which makes treatment tricky. I am willing to give it a shot. I know I felt better on the antibitics--as far as the IC goes anyway and had symptoms again right after stopping them. I also am apt to trust an 89 year old man who is still healthy and working hard to help people and only charges a donation of $25 to do a complicated culture work up. The trick for me is to convince my doctor to prescribe long term antibiotics and diflucan. I'll keep you posted on the culture findings. Have you or anyone else heard of this doctor or treatment?

Name:

reebi

Email:

atelier27@aol.com

Date:

05 Jan 2003

Comment

Suzanne,Sorry, I forgot to ask...what was your doctors name and location?

Name:

Lynnze

Email:

Date:

05 Jan 2003

Comment

To SI, I just went out yesterday and bought the book "Screaming to Be Heard" By Elizabeth Lee Vliet. What an incrediable book that is. I haven't been able to put it down. I have had this burning in my pubic hair and on my labia for about a year and a half now. My experience started with a bad yeast infection and couldn't get rid of it and when I did it came back. Used tons of cream and kept asking my doc. why I was getting these after 15 years of never having them. She said alot of women get them and I'm just one of them. I asked her for six months if it could be my hormones and she said, "no you are too young". Finally I said "Please check them" and so she did and sure enough my FSH level was 68! I was so upset because she never listened to me. Normal levels of FSH are between 0-20. So she put me on Estrogen and my burning went away for two months and then it came back but not nearly as bad. Before I could barely get thru the day and I'd have to run home and sit in a tub of Aveno to feel better. I'm still thinking I don't have enough estrogen, but she says hormones have nothing to do with it. I still do not agree and this book explains and make so much sense! There is a article on a vulvodynia patient and it fits alot of you to a tee! You have got to read this book! Loss of esrogen can cause all sorts of pproblems, UTI 's depression, ect. If you have a low estrogen level mucus membrans dry out everywhere, including mouth, vagina nose Etc. Anyways so I'm reading this book and they tell you to keep getting your levels checked which I insisted after three months and my doc. doesn't believe in, but I insisted. My esrogen level is 49. My doc. said oh its still a little low and didn't change me to anything else. So I read in this book that levels of estogen below 50 have a dramatic increase in sexual problems such as burning, decreased lubrication, painful sex and difficultly geeting an orgasam! Thats where I'm at here! My doc. made it sound like that was ok because all my other syptoms are gone except for the volvodynia which there is no cure except for elivil. Make a long story short, I'm only 43 and you should all get you FSH levels checked, progesterone and estrogen levels checked. Even if your 19 Emily all women can be low on estrogen and not know it. Get them checked at certain days on your cycle, as the book will explain because they do flexuate, If your doc. won't check them find one who will. I only missed one period so you can still be in meno or estrogen depleted and still have your period. Now I am having my period after 6 months without and had it twice last month. My NEW doc. thinks my patch dosage needs to be raised, The bummer is I have to wait three weeks to get an Ultasound to check for fibroids which I'm sure I don't have before she'll up my dosage. I also put on Estrace cream at night and it does sting for the longest time but I hung in there and now I feel like its not stinging and actually makes me feel better. I also understand it takes 6 months to a year for your body to adjust to meno so I'm trying to be patient, I feel 75% better since I wnt on HRT and will not give up till I feel normal. One note I did not have pain during sex as alot of you do just after but the patient in this book did. Pleas I urge all of you to go out and buy this book, you won't regret it! I switched docs. because my doc. who I had been seeing for the last ten years has a waiting room full of pregnant women I felt I needed a new doc. that specilizes in womens health such as hormone replacement because I jus felt my other doc. was too busy delivering babies and wouldn't listen to me. MI, this book will tell you what test to ask for!

Name:

Emily

Email:

eroyce@smith.edu

Date:

05 Jan 2003

Comment

To Lynnze: I am interested in what you said about the connection between low estrogen levels and a drying up of mucus membranes. I'm pretty certain that I am low on estrogen after 2 years of depo and then two kinds of progestrone birth control pills. I'm further convinced since estrace made such a difference initially. But I also must have the most mucus in one body possible. The acupuncturist I saw a couple of years ago gave it a fancy term, but basically said I had a fluid filled head and that fluid seems to go everywhere. Pleasant I know. I'll just have to get my hormones checked and then see. I am home from school now and only have a primary care physician here. I have an appointment with her tomorrow, mainly about IBS that has gotten just too out of hand to bear with anymore. Can she do the tests and will it be covered by insurance? Haha, I don't know why I'm asking since I will see tomorrow anyhow.

Name:

M1

Email:

medusa_m5@hotmail.com

Date:

05 Jan 2003

Comment

For SUZANNE and REEBI - Thanks for sharing your information!!! Suzanne: Would you please tell us the name of the doctor that finally helped you and share his contact information - is he in NYC? Did you ever culture positive for anything, or did you just decide to try the antibiotics? And, a very important question - how long were you on the drugs before you saw any improvement? It is so great when someone posts their success - thanks so much!!!Reebi - I'm in Philly. Susan had me use the Traumeel vaginal supossitories last fall. For me, they did nothing, but if you think you are up to the injections - I would probably go for it. I definately believe that different things will work for different people. I do not believe that there is a single cause for everyone's symptoms. I did interferon injections last spring and summer and the needles were painful as hell - but it wasn't so bad that I regret that I did it. Even though it didn't work - I had to know, I had to try! Susan Spadt is investigating, taking women VERY seriously, and willing to look into information when you bring it to her - and I think that's so important! Please feel free to keep in touch with me at the e-mail address above - I love to know how your treatments with Susan go. I think it is good to have someone to compare notes with.Now, I don't remember who talked about Dr. Paul Fugazzotto, but there is information about him at a site called IC Hope, run by Catherine Simone. She was an IC sufferer who has recovered and I just read her book called "To Wake in Tears" where Dr. Fugazzotto is discussed. I was thinking about contacting him myself as I have also been told that I have IC (not sure if I believe that). If I do get a culture done, I will certainly share the results here.

Name:

Lynn

Email:

Date:

05 Jan 2003

Comment

Hi all! I have a couple things to talk about this evening. First of all I'd like to know what does IC stand for and what kind of disease is it? Second of all for the person who asked about if anyone of us had any successful surgeries, well I had one that was 100% successful! I had a Partial Vulvectomy 2 years ago. I had vestibulitis and now I no longer have it. I don't know what caused the Vestubulitis, but as I look back, I think it may have been eating too many oxolate and yeasty foods. If I would have know more about it then, I probably would not have had the surgery. Anyhow the only thing I regret about the surgery is now my Perinium is very sensitive. So when I have sex with my husband, we have to be very careful to NOT poke the Perinium, otherwise it will hurt. But for the most part, I am thankful that I can have sex again. I do not hurt during intercourse. The only time I hurt is if he pokes the Perinium-so we have to be very careful once he starts to stick it in. And about getting our hormone levels checked, I think that's a good idea! I've been trying to get mine checked for 3 years now but all the doctors I've ever gone to see, they all refused to do it. They all said that either they don't check hormome levels or that I was too young to have any hormonal issues. Finally I did find one that ONLY checked my (I don't remember the name of it) hormone level that fluctuates daily. That was SO NOT WORTH the visit!!! But since I already paid for the visit I may as well taken the stupid test!!! And thanks to the person that suggested the book "Dying to Be heard" It sounds very interesting! I think I will go purchase it this week. But I have a question, what if we do have hormonal issues, can they be cured? Can we go by some estrogen herbs to make it better? Has anyone had any luck with hormonal replacement? Happy New Years to us all and I hope we all gets cured this year!!!!

Name:

Lynn

Email:

Date:

05 Jan 2003

Comment

Hi it's me again! Ihave a couple other questions. They may sound silly but I'm only asking because I don't know the answers. I'd like to know how does yeast, oxolates, acid and estrogen rid itself from the body? Does it come out through urine or bowels or both or can it sweat out through your skin or what?? I'd like to know?? Thank you!

Name:

Lynnze

Email:

Date:

05 Jan 2003

Comment

Emily, Yes your insurance does cover the costs if you have half way decent coverage. Ask for for a baseline estradiol,progesterone,testosterone,DHEA and a FSH level done. Make sure its a blood serum test and not a urine or saliva test. You are supposed to do it at a certain time of your cycle but I'm sure your doc. will explain that. I am now on the combi patch and feel sooo much better! I use the estrace cream and have been for about two months and am finally seeing some improvement but I've read that it takes sometimes six months for that cream to heal your skin. Stress also plays a big role in making your ovaries stop producing estrogen, I was major stressed out lost 15 lbs. on a 5'5" frame, weighing only 105 after, and I read in the book estrogen in stored in body fat. I lost all mine and my skin shrivel up, gums in my mouth burned,nose membranes burned and my body ached all over. Vagina dried up and burned also and now since I've been on HRT all that is gone except for some slight pubic hair burning and some on my right labia, but not all the time. Mostly accures at evening. My hands and feet were also freezing all the time. I'm going back in three weeks for my exam and I plan on getting re-tested to see how my levels are and to hopefully get a higher dose on the patch to get rid of the rest. Good Luck Emily and my heart goes out to you for having to suffer so long and at such a young age. Get the book too! P.S. never tried natural herbs because I was so desperate and wanted to get something done soon and didn't feel like experimenting anymore.

Name:

Marisa

Email:

magongora@hotmail.com

Date:

05 Jan 2003

Comment

EMILY: Dr. Stewart of the V Book defines vulvodynia as "spontaneous, generalized pain in the vulvar area," and that there may or may not be pain with intercourse. Then there's vestibulodynia, which is a specific kind of vulvodynia. It's "pain on touch in the vestibule. It almost always causes painful intercourse. Also called vuvlar vestibulitis." She says she uses surgery (such as cutting off nerve endings or doing nerve blocks) as a last resort after major medical efforts have failed. She does say that the surgery tha works is vestibulectomy, the removal of a section of the vestibule. She says clinicians say it is useful only for women with vestibulodynia (vestibulitis) not women with vulvodynia. he recommends it to women who cannot have intercourse at all. She adds it has a 60% or higher success rate. I have always told my doctor I'm too scared to do it. It's not high enough a success rate for me personally. I'm very glad that some women have had great success with it. I'm just worried because I've also read posts by women who have not improved or gotten worse. I hope all this info helped. Good luck.

Name:

Marisa

Email:

magongora@hotmail.com

Date:

05 Jan 2003

Comment

NICOLA: regarding the interferon shots. Your doctor is totally right. they are extremely painful. However, you survive. Personally, I think that although my doctor is the sweetest, maybe he should have waited longer for the cream anesthesia to take effect.I won't lie, it hurt like hell, and I cried. The first time, I bled a teensy bit afterwards and was miserable. Lots of chocolate that night. The second set, 6 weeks later, just as painful, but I didn't feel so bad later. However, when I went in for my third treatment, I was ready to back out. He noticed that there hadn't been much improvement, so that was enough for me to totally back out. Dr. Stewart in the V Book says she did not have much success with her patients with this treatment. Hope this helps.

Name:

reebi

Email:

atelier27@aol.com

Date:

06 Jan 2003

Comment

Lynn, IC stands for Interstinal(sp?) Cystitis. It is another mystery illness that creates probelms with the bladder. For me it is like having a constant urinary tract infection with abdominal pain. Like VV, for me, it flares and recedes, but never completely goes away.

Name:

Liz

Email:

cotton_candi_chic@yahoo.com

Date:

06 Jan 2003

Comment

Hi. I'm 16 years old, and I have been complaining of vulvar burning since march of 2002, almost a year. My doctor has diagnosed me for UTI's, yeast infections,and i did have a few of those, but after all of that cleared up finally i told her it just burns. She gave me a topical cream,metradinazole, and it clears everything up, and then I have sex and it hurts really bad for the next couple days, so i abstain, i have abstained for up to about 2 weeks, had sex and it hurt just as bad. Sometimes i have a little clear discharge, but not often. I looked with a mirror to see if there were any sores or anything and there appeared to be tiny cuts. Ive been tested for STDs, bacterial infections, all of it, and they are all negative. The skin is dry, red, it burns to urinate and have sex, like it cracks or something,I dont know. Nothing cures me, it always comes back even if i have consecutive symptom free days. I go tired of it and looked up vaginal burning on the net and found out about vulvodynia and vulvar vestibulitis. Im ma