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Name: Howard I. Glazer Ph.D.
CommentThis 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.
CommentHere 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
CommentHi! 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......................
CommentAnyone 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!
CommentI 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.
CommentHas anyone seen Dr. Benson Horowitz in Hartford? Let me know how he is...
CommentPeople 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.
CommentI 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?
CommentHi!! 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!!!!!
CommentVery 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.
CommentBK, 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.
CommentI 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?
CommentTo 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!!!
CommentI 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.
CommentHey 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.
CommentHas 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.
CommentI 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.
CommentI 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.
CommentThere 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.
CommentSorry 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!
CommentTo 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.
Commentk
CommentM1: 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.
CommentI 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!
CommentThank 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.
CommentKaren - did you get the oral swab test from Dr. Ledger?
CommentM1-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.
CommentTo 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.
CommentHow 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!
CommentTo 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.
CommentI 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?
CommentIf 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
CommentThanks 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!
Comment22 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.
CommentS: 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.
CommentI 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!
CommentI 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!
CommentDoes Neurontin have any side effects? Does it make you sleepy, or gain weight?
CommentNeurontin does make you sleepy & I have gained weight
CommentJust 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.......
CommentHi 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.
CommentAnne, 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.
CommentI 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....
CommentNew 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.
CommentGwen: 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?
CommentIn 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.com Thanks!
CommentHi! 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.
CommentYou 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!!!!!!
CommentHi 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!
CommentTo 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.
CommentBeth - 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!
CommentCan 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.
CommentThe 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
CommentTo 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.
CommentI 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.
CommentHi--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.
CommentAllen - 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.
Commentp.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.
CommentI 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!
CommentI 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!
CommentIm really thankful that theres someone out there that cares ive been dealing with this problem alone in the dark for years if theres anything i can do to help vioce the fact that were out here and we need help im willing to do what it takes
CommentThanks, Sandy. That was very helpful!
CommentSandy, 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.
CommentSandy 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.
CommentSandy - 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.
Commenti 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!
CommentALLEN, 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.
CommentSandy 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?
CommentTo 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.
CommentTo 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.
CommentKaren 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.
CommentOne 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!!
CommentIn 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!!
CommentI 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.
CommentOne 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.
CommentI thought that i had systemic yeast for a long time so i went to a holistic doctor who put me on a no sugar diet no refined, no cane,no fruit, no juice, no carbs it lasted about 3 months i was very strong willed and determined to get better it was very bad for me i got very sick i lost to much wait throw up everything i would consume i couldnt eat for 10 days and was rushed to the hospital for an iv i recommend not trying this diet we need a little bit of sugar for energy and balance something that works really well for yeast infections is agresept d by this company called essentially yours when ever my symptoms came on i would put a little bit in my water and it seemed to make me feel much better im ready to get to the root of my problem and stop treating yeast symptoms or im afraid it will never go away
CommentDonna have you ever heard of N.A.E T.? It could be a way of helping you with strengthening your immune system.
CommentI 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!
CommentSandy- 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
Commenthi, 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?
CommentTo: S A N D Y I am very interested in what you said about the vitamin E capsules. Please elaborate on how you protect your skin from the oxalates in urine. Please be specific. I am suffering from this problem too and would lke some advice. Thank you.
CommentTrudy: 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.
CommentTO: 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!
CommentTO: 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!
CommentAnyone 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?
CommentTo: S A N DY Thanks 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.
CommentKaren 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.
CommentTO: 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.
CommentHas 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.
CommentHas 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.
CommentAgain 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.
CommentOpps. 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.
CommentTrudy, Im 22, and my symptoms started at 15. Two weeks ago I was diagnosed It took me seven years Im just starting my jorney to recovery I think the best thing is to stay positive Im so relieved there are other people that are going through the same pain i am im really looking for someone to talk to for support and things that seem to make them feel better
CommentTrudy: 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?
CommentTo 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?
CommentEmily, 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.
CommentHi 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.
CommentTo 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!
CommentI 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.
CommentI DON't think it's yeast. I think you've missed the point!
CommentYour 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.
CommentPaulette, 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 .....
CommentPaulette -- 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.
CommentTo 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.
CommentMy 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.
CommentTo 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?
CommentTo: Maria Eva. Thank you so much that is a huge part of the puzzle. I think you are totally onto something!
CommentTo: 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!
CommentSANDY -- 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!
CommentTo: 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.
CommentTo 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.
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CommentHere 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.
CommentTO: S A N D Y Just curious, was the swelling you were experiencing on both sides or just your left side??? I am on the thin side as well, during the past year I lost over 34 lbs, because I was so miserable and in so much pain, I didn't eat very much, hence the weight loss. Finally, did you take any estrogen supplements, please let me know. Thank you, Sandy, I think you are on to something important.
CommentOne 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?
CommentTo: 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.
CommentTO S A N D Y: To answer your question, I was extremely stressed out due to a family crisis. That is how it all started. I believe age, in combination with stress and or depression, mix in less estrogen, is a component in this awful condition 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
CommentTo 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!
CommentI 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.
CommentI 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!
CommentIf 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?
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CommentSandy, 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.
CommentI 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!
CommentTo: 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!
CommentHere 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.
CommentI 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.
CommentFor 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.
CommentMy 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!!
CommentI 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.
CommentI 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.
CommentSandy: 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."
CommentUsually 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 |
