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CommentWelcome to the 21st vulvodynia guestbook and continued thanks to all the participants. Howard Glazer Ph.D. www.vulvodynia.com website owner
CommentHere is a site to read about the steroid ointments. I am not going to write something on here that I know absolutely nothing about. I used 2 of them and I DID become dependant on it. If I didn't use it I would become more iritated and couldn't understand why and that was one that was an even lower strength than the Clobetasol. Clobetasol is high potency.I used the clobetasol FIRST and then a lesser strength one because the doctor I started seeing afterwards who knows about v.v.s said Clobetasol (Temovate) is too strong for the vulva.He didnt want me to use it for more than 3 weeks but I did so anyways because I thought it would help since it DID make the pain less. AT FIRST. Here is a site so you don't think I am talking out my bum on the dependency thing. But everyone can feel free to use all the creams and ointments they want on their vulvas and inject whatever you want to into them. The only way a steroid ointment it will make vulvodynia go away is if you had nothing more than contact dermatitis causing it. It DOES start to make you feel better if you have v.v.s. but unless your pain is from dermatitis, its not going to cure you and your vulva WILL become dependant on it. Why do you think they try to only have you use it for a week or 2, a month at the most unless your doctor just doesnt give a darn. Why would you want to THIN irritated skin? I am not going to post much about the low oxalate diet and the use of calcium citrate as of yet because I don't want to jinx myself, but lets just say I am VERY positive this week, and thats how I feel even AFTER having a chemical burn brought on by a yeast cream and estrogen cream in a months time plus going swimming before my burns were totally healed. Shannon e-mailed me today and I need to answer her, but she commented on my being so positive this week and I can honestly say I have full reason to be. I have used in 10 months all the creams and ointments in the world and swollowed my fair share of anti-fungals and anti-depressants and the only improvement I have seen is right now after following Wendys advise. But hey, you all do whatever you please. There is a site below about steroid ointments for the person who didn't really believe that you become dependant.I saw a specialist at Shands (its like Mayo for those of you who arent farmiliar with it) and he told me NO SURGERY and not to have anything injected, it will work for awhile but after extended injections your vulva becomes immune. But I have seen so far reading on here that I am pretty much talking to myself. I personally will continue to take the advise of the ONE person on here that is better. And for everyone else who has talked to Wendy, like my Aussie friend Shannon, keep it up ladies!!!! I have noticed an incredible difference in just a week. Wendy told me it happens gradually. But I don't want to jinx myself any further. Steriod ointments:http://www.internationalrosaceafoundation.org/steroids.htmlNow for the lady having the pain in your ovary, GO TO YOUR DOCTOR AND HAVE THAT OVARY CHECKED! My mom had an ovarian cyst. They gave her oral BC pills and it disappeared. That won't always be the case but that is usually what they try first. And for the lady who is having the signs of menopause,(you didnt post a name) that is probably what is causing your vulvar pain. You might want to see another doctor if you told the present one about your menopausal symptoms and he/she just handed you a steroid ointment and pain killers. Menopause cant be controlled by steroids and pain killers.
CommentWell it looks as tho I didn't hit the send button or something on my last post. To the lady on clobetasol (Temovate), I know the other person who posted on it said she didn't know about becoming dependent. I wouldn't post something here that I knew nothing about. I WAS dependent on it. It has been proven that that DOES happen. You should NOT use steroid ointments/creams for an extended period of time. I didn't beome dependent on clobetasol bcause I used it for only a week. I became dependent on Valisone. Temovate or as it is chemically known as clobetasol, is one of the most potent topical steroids. I was supposed to be on Valisone for 3 weeks only but I wanted to believe it would help me because it helped some when I first started using it. When I discovered that it wouldn't and I started burning like I ahd before using it I got pretty upset. So whenever I started burning more I would use it to aleviate the more intense burning. It got to the point where I would do that for a few days and then it would feel some better and when I would stop using it i became much worse. I didn't understand why adn then I accidently came across a website explaining it to me. I didnt know the vulva could become dependent on it either. I will add a website below that will tel you I am right. Please becareful using that. It is NOT going to cure you. Unless of course you just have contact dermatitis. Just don't use it very long at all. But you wrote that you are having menopausal symptoms. You might want to go see a new doctor if the one you have now knows you have these symptoms and just handed you a topical steroid and some painkillers. And for anyone on the low ox diet and taking the calcium citrate with magnesium and the ox-absorb, I am not going to say I am better, I don't want to jinx myself, but I will just say I am VERY POSITIVE the past 2 days. And I will not stop this diet or my supplements. I have now been taking the ox-absorb yet because they are so darn hard to get ahold of except online. I felt just fine yesterday, I didn't want to chance it and wear jeans, but I could have. Then my baby wanted breakfast for dinner, hes 7 and thinks thats cool and I had some pancakes with alot of syrup and about 2 hours later I noticed more intense burning. I was ok this morning and then I went out for chinese food for lunch, I am burning more than I was this morning now. I guess it was the MSG because I had fried rice and meats and an eggroll( cabage), nothing that was on the high oxalate list. And I drank water. I think I remember reading MSG is bad for us. But I know that there are those of you who just want a cream or pill cure because changing your eating habits is too difficult for you or you just don't care, but I was ok until I ate things I shouldnt have. I will heal slower than say maybe my new friend Shannon :o) because I am still healing from a BAD chemical burn, but I have seen a tremendous difference just over 2 days. I can only imagine how I will feel after I start the ox-absorb. I will NEVER use another cream or ointment or use another anti-depressant. And for anyone who is worried about bacteria or fungus, read up on Olive Leaf, I take 2 in the am and 2 in the pm with my calcium citrate. Oh yeah, to the lady with the ovary pain, have that checked. It just may be a cyst. They usually try you on oral BC pills first because it can make them disappear. My mom had ovarian cysts. BS pills made the first ones disappear. She was 26 then. She got cysts on her other ovary at 43 and they didn't go away so she had her ovary removed.
CommentTo Marie: Regarding vulvodynia and hormone levels, if you have read past guestbooks I posted that I thought it was low estrogen contributing to my wife's symptoms. We went to a endocrinologist together and he took a blood sample and also a swab from her vagina. He said the swab would show estrogen in the tissue aside from the blood. Everything came back within normal range. I asked if he believed in optimum levels but he was disinterested in such thoughts. He was actually more interested in what the Estrace ointment my wife was applying vaginally might be doing to me. The same old sexist stuff. I still think hormones play a part in at least some of these cases. He also said if her periods were normal that was another indication estrogne was normal. Wish I was a doctor, very hard to question or challenge these Gods....
CommentMarie-You posed the question could our problem have to do with low estrogen. I personally was on ortho tri cyclen as my form of birth control, it is one of the birth control pills that have a higher form of estrogen. I wondered the same thing. I was having an abnormal amount of discharge for a time after this started and I actually had a doctor tell me that it could have been from too much estrogen. He gave me Mircette, an oral BC with LESS estrogen. I stopped having a perid during the 3 months I was on that. I went to another doctor, a female, who told me NO NO NO you dont need less estrogen, you need MORE, she gave me the choice of going back on ortho tri or trying Ortho Novum 777, I decided to try Ortho Novum thinking since it had a bit more estrogen than Ortho Tri that maybe my v.v.s. would go away. It didn't. I was on that for the past 6 months. I also had strange periods form that as well. It was practically non existant. I decided to go on the low oxalate diet and to start taking calcium citrate and STOP birth control all together for quite some time. I cant have intercourse so I dont see the need to stay on them at this time. Plus I had been on BC for over 7 years. Just in the past 2 days I have noticed an improvement. I am not going to get my hopes up too high just yet. But I am feeling very positive that the diet and calcium are positive for my body and that low estrogen is not MY problem. I know the older we get hormones play a role in our vulvas changing, but I am only 30 and have had maybe 3 or 4 yeast infections in my life and had bacterial vaginosis for about 8 months until they tried Flagyl 3 times a day. It was week and a half after I stopped the Flagyl and the bacteria was gone that my v.v.s. started. I found another forum the other day and was reading a post, I didnt look at the date and now cant find the post again, so I dont know how long ago it was written, but it said that the Vulvar Pain Foundation was offered $50 million to aide in the research of vulvar pain and they turned it down because they "don't trust the government", has anyone else heard this? It may have been long ago and old news, but I just read that. It kind of made me angry but at the same time I thought they may have had the right to think that. We all have been used as guinea pigs by countless doctors who know nothing about our pain and when you get the governments money involved, who knows where that would go. I am tired of creams ointments, pills, doctors. I am going to continue to follow the advise of Wendy, the ONLY person I know who beat this. And from how I have felt the past 2 days I think what worked for her is going to work for me as well. I ate chinese food for lunch and forgot I couldnt have it and ate some ice cream too and then a few hours later I noticed a change in my burning and redness. That has to account for something.
CommentI was 19 years old when I felt the first signs of vulvadynia. Seven months later, after many tests, cultures, and uneeded meds, I was finally diagnosed with vulvadynia in March 2003. I am now 20 and trying to cope with something that makes me feel so many different things, on top of trying to map out a good life for myself as I'm entering adulthood. I was in a sense relieved, but at the same time scared to death. I wanted to know some answers, and unfortunatly my doctor couldn't give them all to me; for lack of education with this condition. I felt very afraid, angry, betrayed by my own body, dissapointed, and not to mention, very very alone. Privates, for instance, have always been 'hush-hush', and an uncomfortable subject for others around me. Thank you for showing me that I'm not alone, and I'm not the only one who feels these things, plus many more undescribable emotions. I hate that this is an issue for us, but I am thankful for being able to share with eachother. Thank you again for your website that brings us together with our own similar stories.
CommentTo Marie: I've written in past guestbooks that I encouraged my wife to have her hormone levels checked. We went to see an endocrinologist together. He took blood and also swabed her vagina. He said the cells on the swab would show estrogen at that particular site. Everything came back within normal range. He was actually more concerned what the Estrace my wife was using was doing to me. I know how stupid that sounds. I was convinced her recurrent tear and labia shrinking were due to the lack of hormones. I have heard of the tern"optimum hormone levels" this refers to either estrogen or testosterone levels being in a range where they are of most use. Makes sense that if your estrogen is normal but low it may be a problem for you. You ladies are still doing your best to figure this mystery out, I just wish more was being done on the professional research level. Best of luck.
CommentHi, I haven't posted here for a while. I've just been reading and had to put in a few comments on the hormone issue. I've had this condition for 2 years now but am 80% better. I'll try to make this short and explain what started mine. I believe mine was all hormone related and started with yeast infections, bv infection that just kept coming back. I used many rounds of of yeast meds and they still wouldn't get rid of it. I finally TOLD my doctor to check my hormone levels and sure enough I was in meno. with a FSH level of 64. Level of 0-20 is normal and then anything over that means your ovaries aren't functioning and then producing low levels of estrogen. My estrogen level was 45 and should be alot higher at least 200. I feel all the yeast meds burned my skin, I have no pain during sex just burning on right majoria labia andd skin on my clitoris always feels stinging. It goes up into my pubic hair also, weird huh? Well anyways from all of my trial and error I finally am going to a natural doctor who has put me on compounded estrogen cream for my skin and compounded estodiol, progestrone and testosterone pills to take orally. Also I was always having my period just missed one month so you can still have your period and be peri meno. Miy skin has improved alot! The burning is down to aaa little bit at night andd alot more pain free days. This is after 8 months of estace cream and then switching to the compounded cream. I feel that it takes time for your body to adjust and for your hormone levels to get back to normal. I went from having to come home from work and juping in the tub because I was so sore to wearing pants anddd just being alittle irritated at night. I continue to put my cream on at night and nothing during the day. I am 44 but this all started at 42 as I have read in alot of posts it starts with women in their early forties or women on the pill. I think the low oxlat diet is a good thing expecially since it helps, but I believe mine is hormone relate, all of our beautiful bodies are different so it different things work for some. I was also uner alot of streee when this all started which I believe sent my hormones crazy and then my body started drying out and setting my vagina up for yeast and bacteria. Frank... I know your doctor says that your wifes levels were normal but my doctor believes that some women need more estrogen, mine doc. goes by how you feel....my level was last tested and I up to 149 and still am working at getting it higher. My compounded meds. can be adjusted so it works wonderful. I think it great that you are so supportive. If you are low on estrogen your whole body dries out and think about how delicate the skin is down there. My gums used to burn and my facial skin was so dry in the morning that I swear I was drying up all over, now my skin looks great!! My other doctor kept telling me that I was too young and it cound't be hoemones so I went a year trusting her with no estrogen in my body till finally I told her to check me, it still pisses me off the time I wasted with her. Just thought I put my 2 cents in here and I pray for all of you ladies out there that are suffering, don't give up! Oh, I also use grafefruit seed extact pills for yeast and haven't had any problems with yeast.
CommentCandi, You are giving out some great advice and you are on your way to beating this thing. No more cover-ups for you! No more guessing games and no more being used as a human guinea pig. Oh, and no MSG as it is a terrible irritant to those of us who are sensitive. With most women, this starts out from some form of trauma to the body. It can be many antibiotics which inevitably leads to yeast/candida, or even b.c. which can lead to cysts or just anything really that causes trauma to the body. The immune system is at risk and then most people find themselves deficient in their electrolytes: sodium and potasium, therefore, leading to sensitivities to many foods, headaches, and other problems. When this happens the body cannot absorb what it needs nutritionally and will then find ways to tell us it needs help: pain, etc. Many of the women that I have dealt with are vegetarians. Soy is a main staple. Soy is very high in oxalate. Most of these women practically live on Soy. This causes a sensitivity. In the case of VVD Oxalate is absorbed and not excreted properly. Most of these women eat the same foods over long periods of time. All of the high oxalate foods are not excreted properly and turn into oxalate crystals, get into the tissues, and end up in the urinary tract and in the urine as oxalate crystals - this causes pain, redness, burning, itching, swelling...It is not about what to put on top, what to cover it up. The body is crying from the inside out. If you want your body to change, you must change what you are doing since you are the only one that feeds yourself. The irritants must be eliminated. I do not have a problem anymore. I have had this since 1990 and was diagnosed in 1993 and healed myself. I have been free of this since 1997. I have been where all of you have been. But became desperate and realized the truth after so many doctors, meds, creams, humiliation, etc. I also had yeast for 10 years and now have beat that too. This is a journey and I wish that I had someone like me for guidance at the time. For those of you that I have talked with, and there have been quite a few, I am happy to help. I want to help you. These doctors do not know what this feels like. How can they? So they want to make us feel better and give us relief, but that relief is only temporary and can definately make things worse. I was on an endless circle, my cuboards were full of everything, it cost me a fortune, and I even had doctors telling me not to come back that it was in my head and everything they gave me made me worse. This is the only way out for those of you who have true vulvodynia. A very nice women came to my house yesterday and we tested her for 2 1/2 hrs. She thought she had vulvodynia. She didn't. She had candida, mineral deficiencies, including iron, low immune system and liver problems. This can all be corrected with the proper supplements and diet. And she also is a vegetarian who lives on Soy. What a wonderful person she is and look what she has to go through with doctors giving her everything to... I am sorry I am going on and taking up too much space...I wish all of you the best of luck on your journey and hope your road ends soon in health. I am willing to help those of you who are ready. Where else do you have to turn?
CommentTo Lynnze: You make some very good points with your post. Getting my wife to see this endocrinologist was a struggle, she doesn't like doctors. Once he said her levels were in the normal range that was it case closed. To be honest even if he said she could benefit from supplementation I don't think she would have gone for it and I would not have pushed her to do so. There is still bad press on hormone therapy; if it can be done naturally then that's an option to consider for us at least. She is also under a lot of stress with parents who are ill and the regular stuff children and finances. You touched on what I believe is true of women and men that there are optimim levels of hormones we need to feel and be well. Not all doctors are aware or agree with this, they see test results and if you fall in that acceptable range that's it. Hey best of luck and thanks for the thought.
CommentHi all,I met with Wonderful Wendy this week and wanted to let you all know about our meeting. She spent a lot of time with me muscle testing me for allergies to various foods. I have been thinking i have vvs from a combination of health problems including yeast and it turns out the test confirmed i have yeast in my system. it's strange though cause i don't get recurrent yeast infections, only if i am on antibiotics. Nevertheless, it is in the system. so i am starting a yeast free diet that i will stay on for 6 weeks then i will slowly add foods back. i am mostly using the yeast connection cook book by william crook. but i have to eliminate more foods as Wendy found i was allergic to them. Also i have been putting dead sea mud on the vulva for the past 2 weeks and found it INCREDIBLY AMAZING. What's interesting is Wendy found that i have a mineral deficiency and i think the mineral-rich mud is a great salve or mineral deficient people. It's so great to have this virtual community where we can exchange our knowledge and experience. i only wish we could have an in-person exchange like i had with Wendy because that is really the best. Maybe if everyone here could organize themselves by region and get together we would see more results toward health. Thanks again Wendy. It inspires me to know there is such a wonderful woman out there! Love, Mira
CommentHi Mira: You sound very positive so good for you. I would caution you that the only way to test for mineral deficiency is through blood or hair samples in a lab. Please don't be fooled by something called " Applied Kineseology ". This is a fradulent tactic used by some chiropractors to make money. No one can really test your muscle strength and related deficiencies or allergies by holding a food, vitamin or mineral near you. It is a scam....
CommentSusan-Just because you do not believe in a certain practice does not mean that it is a scam. I have been "scammed" by every doctor I have been to so far, taking my money and then handing me anti-depressants for vulvar pain.This includes the so called SPECIALIST in vulvar disorders. I also have tried muscle testing and scam or not, I tested negative on every single food that is high in oxalate and also on my wonderful anti-depressants that the medical community wanted to shove down my throat because they can't tell me what is wrong with me. This woman, Wendy, is one of 2 people whom I have met who are living pain free. Both women are practicing Applied Kinesiology. They were in pain until they started following this practice. Are you pain free? Obviously not. So I will stick to what I know. I have been dragged through the mud by the medical profession and used as a guinea pig and kept getting worse and worse from the drugs, creams and ointments they were giving me.I just got a chemical burn from estrogen cream that I was handed. They cut on my vulva for the sake of science. Yes, there are people out there practicing muscle testing just so they can sell supplements. Wendy however is not doing that. She is teaching those of us with an OPEN MIND who are tired of being used as guinea pigs,just as she was for 13 years, out of the kindness of her heart.She is not a doctor in ANY standard. She, if you have been following posts, just got a job working for the forestry department and is moving to the mountains on Tuesday. She doesn't sell anything. Therefore, she is not out to "scam" anyone. ALTERNATIVE does not mean WRONG. Just because it is not something you believe in does not mean that it is a scam. Native Americans have been following this practice in certain ways for hundreds of years. So I guess you are basically saying an entire race is wrong. But you go right on taking your anti-depressants and rubbing crap on your vulva and pray that your doctors will one day really give a darn about your pain and maybe they will whip up a miracle pill for you to rid you of your vulvar pain. Mira- you met Wendy. You were lucky enough to SEE for yourself that she is pain free. You do what YOU feel in your heart is the right path for you. And for those of you holding your breath for someone to shell out some grant money to aide in the research of our pain, don't hold your breath TOO long. You might suffocate. The VPF turned down a 5-million grant from the government in January of 2002 because, THEY DON'T TRUST THE GOVERNMENT. So there's how great your non "alternative" medical professionals are.
CommentSusan,I don't implicitly believe in any one system, applied kinesiology included. We are all in charge of our own health and have to seek out our own cures. meeting Wendy was part of the process for me to getting over this. I have been slowly figuring out what works and doesn't work for me. I don't really want to spend more cash on lab work. I already spend thousands on this and my other health problems. I know I have a mineral deficiency and a lot of food allergies. I don't need to see it on paper. I can tell because I have always had brittle nails and hair and because I have allergic reactions to many foods. My idea is that if you listen to your body and seek out help eventually you will find what works for you.
CommentSusan, I think that CANDI said it all. I feel sorry for you and wish you the best of luck in finding what works for you. I will think about you while on my 10-mile hikes in my thong, completely free of this humiliating condition.
CommentHi everyone. I thought that some of you may find the following interesting. It's from the Vulvar Pain Foundation website and is titled 'Seminar Attendees Report Recoveries'. A lot of the information backs up what Wendy has been saying. Happy reading! http://www.vulvarpainfoundation.org/vpfrecover.htm
CommentCan anyone tell me why it is necessary to take calcium citrarte with the low-oxalate diet? I've always been a big milk drinker, so do I need the Citracal? Thanks for any response.
CommentJust wanted to comment on the Applied Kineseology thing. I say do whatever gives you relief, hey the experts aren't much help. I'm no rocket scientist but I can't for the life of me understand how the A.P. can be for real. I have a old friend who has practiced chiropractic for years he told me it's all bull. That doesn't mean the person working on your isn't insiteful and picking up something the doctors are missing. If it's just vitamins and minerals what is the harm? Give it a try and post your results. Best of luck and keep trying.
CommentJeanne-It is the "citrate" in calcium citrate that neutralizes the oxalates.
CommentI remember when Chiropractics was considered a bunch of bull. Now more and more people are going to get adjusted instead of taking handfulls of pain killers to make the pain go away. New practices are usually always considered "out there" until more and more people get relief from it and then it becomes the "in" thing to do. You used to be able to count on one hand how many chiropractors were in the phone book, no they take up pages. When my younger brother was small he used to get high fevers all of the time and he went into convulsions once as we were walking up to the doctors office. He was given tylenol and motrin to take at opposite intervals and his fever still wouldn't break. My mom had heard that a chiropractor could make a fever break. She thought it was a bunch of crap, but was desperate so she took him. I was in the room when his neck was adjusted. He said it sounded like popcorn popping in his neck and by the time we left the office his temperature was back to normal. So everytime his temp would shoot up and she couldn't get it to break with fever reducers, off to the chiro we went. I used ot get chronic stiff necks until I had one so bad that it lasted for 4 days and I was in agony. I was in 7th grade, we went to see the chiropractor and I have not had a stiff neck since. But everyone thought it was a scam. I remember hearing they were people who flunked med school. I bet the man who invented penicillan was critisized at first too.
CommentMaybe I'm just crazy, but I don't think anyone should wear thongs! They seem really unhygienic to me, just the way wiping from back to front is considered to be. It just doesn't seem right to have something in direct contact with your vagina that is also in contact with your anus ...
CommentWendy -- For someone who is advocates alternative health, your posts come across to me as being a little sanctimonious and narrow-minded. These guestbooks should be a place for open discussion, and although you doubtless have a lot of valuable advice to offer, there is no need to arbitrarily belittle the opinions and suggestions of other users without good reason. It is important for women on here to feel free to discuss the treatments they have tried or have had recommended to them ? if only so that others can share their own experience (positive or negative) of that treatment. For years, I have been an advocate of homeopathy, and have learned from experience that you can ?lead a horse to water, but you cannot make him drink?: some people will be receptive to new ideas, and unfortunately, others will not. Some can be won over by convincing argument, others will simply come to you when they are ready. Frustrating as this doubtless is, it is a fact of life. Using emotional blackmail (implying that we are to be pitied if we do not unquestioningly follow your advice) is likely to further alienate the sceptics, rather than win them over. It is also rather similar to the didactic approach used by some members of the conventional medical profession, who many of us have come to distrust. Because you are only really able to help us on a one-to-one basis, it is inevitable that many of us will not make contact with you, and sadly will not ?hear? your message. Many will. But please respect those of us who do not by not forcing the issue. It would be wonderful if you were able to start your own website, or provide the pamphlet you are writing for your gynaecologist via e-mail. I, for one, would certainly check it out!
CommentJust a word on alternative approaches.....I saw a television program a few weeks back about the history of blood and diagnosing blood types. A few centuries ago, a common approach to many illnesses was to "bleed" a patient. Eg. a patient that was chronically ill already would be literally cut and "bled" to get rid of an illness. One particular patient was having so much trouble breathing that a doctor suggested what is now known as a tracheotomy - simply putting a hole in his throat to allow him to breathe - but the idea was thought of as totally radical. But I agree that everyone should be able to share ideas here and that no-one has the right to criticise or get angry at anyone else. Whatever works for each individual should be respected. Best wishes, Shannon
CommentNew ideas are usually always thought of as weird. And some always may be.I am tired of the normal approach not working so I am going the not so usual road for now. Can't hurt more than anything else I've tried.And it's actually not so unusual. I am trying a new diet, women do that everyday I am adding a calcium supplement, at 30 I needed to take calcium anyways and I am taking something that will bind with oxalates, if anything, it will keep me from getting a kidney stone. I met yet another lady yesterday who has e-mailed me and her pain started with a very bad bacterial infection as well. I will NEVER take another antibiotic or antibacterial again as long as I live. I need to get a good probiotic though. Looks like ANOTHER trip to the health food store. Hey I have a "radical" idea. I want a vulvar transplant! They can transplant my organs and turn men into women, so why can't they make an existing female part BETTER?!?! I even have seen scientists grow an ear on the back of a rat! They can do really strange things in the name of science but I want someone to get determined and throw some money our way. Oh wait, they did, but the VPF turned it down! I was hoping I was going to win the lottery tonight. $79-million. THAT would have given someone a start! G'day Shannon my girl! I am hoping to get my cookbook this week, keeping my fingers crossed. Then we can eat easier. I HOPE! Watch the food be totally gross. But I can't live on tuna and romaine lettuce forever! I have been officially off of caffeine for 2 and a half weeks! We need a support group. CAA- Caffeine Addicts Annonymous
CommentCandi ? I completely agree with you. Reading this website has shown me that antibiotics, steroids and surgery seem to cause more problems than they cure. And, as you say, the low-oxalate diet is not really so radical. Kidney patients have used this diet for years and I have seen the low-oxalate/calcium citrate diet recommended as beneficial in a postgraduate reference work for gynaecologists dating back to 1993. It makes you wonder why no-one tells us about it? I personally think that it?s because the pharmaceutical companies don?t really want us to hear about it. Here in Britain, at least, drug companies are desperately trying to have legislation brought it to ban the sale of homeopathic, herbal and other so called ?alternative? medicines (for want of a better word ? most of us on here know that most of these treatments pre-date all forms of so-called ?conventional? medicine) because they are supposedly ?unsafe? as it is not proven how they work! I suspect that it?s the fact that they do work, (often without any side effects, and for a fraction of the cost) which is urging pharmaceuticals giants to have them banned. If the story about the vulvar pain foundation (? I think) refusing government money to research this condition is true, then one reason might be that they feel when that amount of money is involved, pressure may be put on government by pharmaceuticals lobbyists, who may in turn put pressure (I?m thinking bribe) on researchers to reach conclusions which favour the use of prescribed drugs. I must add that since reading your posts in particular (for about a week or so) I have been on a combined low-oxalate/low yeast diet and have also been drinking a lot of chamomile tea and I have seen more improvement in my symptoms than with anything else. I hope my use of the word ?alternative? has not caused offence: please understand, I also think natural solutions are the way forward.
CommentI agree with those who feel this is a place to share information and experience not insult or belittle. I respect Chiropractors for their dedication and professionalism. I myself went to one for several months until it was discovered through an M.R.I. that I had a herniated disc and chiropractic could have done more harm than good. But if negative experience is the only guideline then how many of you ladies could recommend gynocology as a reliable and helpful science? My wife and I guess all here have had nothing but failure and disappointment with gynocologists. What will be the final answer? Will it be the last fifty years of artifical ingredients in your food, chemicals in your soaps, pollutants in your environment, genetic, hormonal or sexual disease variables? I think it will take more than the tireless efforts of the women here. I really think it will take the kind of research that has helped men with sexual dysfunction. The millions upon millions spent to help men that should now be spent to give relief and answers to you ladies. Best of luck to all.
CommentGERI: It is very difficult for me to go on here and read what all of the women are going through because I was there. I tried everything, took everything, applied everything and listened to all of my doctors for a long time. Then I tried different forms of alternative medicine and none worked either. I finally tried muscle testing when I was desperate and it is the only thing that cured me and helped me figure this out. I have helped many women and the ones that have listened to me are now doing great. I do not mean to sound self-righteous, but I have been doing this for 10 yrs., and I know that this worked for me and many others. Not everyone can do this. I have been to some N.D.s who did not know what they were doing. I agree that it is important for the women here to discuss their feelings and share. It is just hard to watch them suffer. I feel sorry for the ones who are suffering. I do not expect everyone to follow my advice. I agree that some will be receptive of new ideas and some will not. To me, this is not a new idea. This has been going on for centuries and it is just a way of life for me. I completely believe in chiropractic, but only if you find the right chiropractor for you. I have one now that I absolutely love, but 10 years ago I had one that made my back & neck worse. I will stick to what I am doing and will continue to help others when they are ready as no woman should have to go through this alone. You have a lot of good things to say, Geri, but I do not know too many women on here that are free of this nightmare, do you? You are absolutely right about the one-on-one basis, but I am trying to help on phone too. I have spoken to so many women now for hours at a time and there always is a pattern in which diet plays a huge role, and every one of these women have been to so many dr's and have tried everything. If I would have known someone who had gone through this and was cured, I could have avoided the years of agony that I went through. I am considering the website and my GYN is giving out my # as she sees that I am living proof. Thongs: My daughters used to tease me if they even saw a hint of a panty line and then I tried them and now I like them. I have not had a problem with them and I prefer to wear a pantiliner with them. If you find the right thong, it will not slide. You are exactly right about the fact that something should not come into contact with both areas. I appreciate your input. I sincerely wish you good health with all of your endeavors.
CommentFrank-Thank you for your last comment. I am not saying that we want money to be taken from research for "men's" problems and given to us but for things like Viagra it does make me a little ticked. I mean come on there comes a certain time in every mans life when IT just isn't going to work anymore. Devistating to every man, yes. We know that devistation, but vulvodynia comes at any point in our life. I am only 30. I was afraid of going through menopause because I was always told by older women that sex pretty much ends because it "dries and shrivels up" But our devistation with vulvodynia comes with PHYSICAL pain. Debilitating pain, it affects our ENTIRE life not just our life in the bedroom. I would never say take research money away from this or from that just from things that are only produced to make money. My stepdad (he's not quite 50 yet) is having some problems with his prostate and I am thankful that research has been done for his sake. And I am definately not limited to things like Viagra, look at Botox. What a waste of $$. Darn it who do we have to hold hostage in order to get funding around here?!?! :o) Geri-Thanks for the compliments. I totally agree with your view on why the VPF turned down the money. I thought out both sides of course and I personally don't trust the government in certain aspects either, yet at the same time I am in pain and there went our big shot and who knows when THAT might happen again. I really am starting to not like the word "alternative". It isn't really alternative. But NATURAL like you wrote. I am taking things grown straight from mother earth. Sorry to all if my post didn't make sense. I am still so darn sleepy. I haven't taken my elavil for 2 days and I haven't been sleeping well. I guess its like caffeine withdrawls. I will eventually get used to it.
CommentTo Candi: You are right that there comes a time when " Things Just Don't Work Anymore". I'm not there yet and almost wish I was. I've considered medication to kill my sex drive,just so I wouldn't feel so driven. I do think there are plenty of dollars wasted on stupid research. Here we have maybe thousands of women in pain not getting proper treatment and self medicating in some cases. Certainly alternative treatments are justified when you are in pain and not getting help from mainstream medicine. Good question, what does it take or will it take to get funding and research? They all laugh on OPRAH at the mention of vulva or clitoris. These words are more taboo than penis. Why? I think women are still not given the regard given to men and many women are to blame. Oprah is just one woman in a position to help a bit and there are plenty of others. Even female friends and relatives do not want to hear the details, makes them too uncomfortable. I say tell everyone you can think of the pain you are in. Annoy your doctors, clergy, politicians, friends and relatives. Let them know everything is not alright and STOP SUFFERING IN SILENCE. You women accept too much. There must be a better way to get recognition. I not only think of my wife and how she is in pain at times and how our sex life and relationship have suffered, I think of my daughters and wonder about their futures. Will they suffer from Vulvodynia because not enough was done right now?
CommentGreetings to all who visit this site. I just discovered it two days ago and find myself addicted to reading all the anecdotes. It gives me such sadness to read of the suffering, yet offers hope and comraderie and support, as I am afflicted with V V S and have been miserable for two years now. Until I checked out the internet I felt like the only person in the world with these symptoms and problems. I've never heard a word uttered from another woman regarding this issue. We should be shouting! Regardless, thank you for the opportunity to share in this forum. I have more to discuss in the future, but for now would simply like to address a post I just saw from Dec. 16, 2002 from Fran in Ireland: Fran, if you are still connecting with this guestbook and have yet to find help, I know of a doctor who recently trained at the University of Iowa Hospitals in the Vulvar and Vaginal Disease Clinic and then moved back to her homeland--Ireland. I know very little about her, other than having one office visit with her. She seemed very well versed and interested in this area of study. She did mention that her specialty is in dermatology, and that her work in the vulvar and vaginal diseases area of gynecology blended well with this. Her name is Dr. Lotery. If you wish to find out more about her whereabouts, please contact the University of Iowa Clinic I mentioned previously. Two numbers to try are 1-319-353-6223 or 1-319-356-2631. I wish you all the luck in the world.--Angelina
CommentI've been sitting here trying to think of something to write, but my mind is a blur today. I have had people reply to posts I have made, mostly positive, sometimes not and that is perfectly fine. People are entitled to their opinions. I for one am very outspoken and I find myself rewriting some of my posts just so I don't overly offend anyone because that's how I am. I have had people e-mail me and ask me how I have gotten so motivated lately. I am in pain 24/7 and have been for almost a year. It gets to me and sometimes like today I sit and cry all day long. I had a BAD reaction to a few things a doctor gave me and then to chlorine adn it got me down VERY low. I just keep thanking God that Wendy came along at that time. I have read many negative responses to things she has had to say and that is fine. Like I said, we are all entitled to our own opinions. But it just get a kick out of it sometimes because it is some of the same people who e-mail me or post something positive to say to me. Everything I am tryine and everything I am doing is because of Wendy. She never once tried to push muscle testing at me. I begged her to tell me what she meant when she said she tested herself. Then when she explained it to me I begged her to teach me. I live in Florida and she lives in Cali so unfortunately I couldn't go see her. We did it over the phone. s will agree on everything all of the time. But I just think that maybe some of you are seeing her all wrong. I have talked to her on the phone and she is just so bubbly and sweet and so motivated to help other women get to where she is. And it may not help everyone but she said to be before when we first met that even if she helps one woman it will all have been wirth it. And if I am one of those women and I can help at least one person then it will have been worth it and so on down the line. It's hard to really know how a person is coming across just by reading something typed in black and white. I am sure I come across as snotty sometimes when as I was writing I wasnt trying to come across that way at all. It all has to do with how you read something. Some people read Wendy as pushing her views, I read it as her being very motivated. And I am sure tha tI have read others posts in one way and someone else may have read them differently. I am just thankful that I have somewhere to go so that I CAN talk to women who understand my pain and my sadness and my anger anf all of the other emotions I know we all go through. And I am very blessed that I have made 2 new friends that I can relate to maybe more than others. Wendy is my support and my mentor adn most of all my friend. If I am not lucky enough to get better I will always be glad that I have her to talk to. She is just a wonderful woman all around. And I am glad I met Shannon. Shannon is my sister on the other side of the globe. We are so much at the same point right now and I am so glad I have someone to relate to like that and to share my frusterations an dmy feelings with, I am enjoying getting to know these two amazing and very different women. They are what keep me positive and keep me from sitting on my couch and crying for the rest of my life. I have written before that we have only ourselves to lean on and that isn't true. We all have each other.
CommentWelcome to the group Angelina! I am sure we all felt when we were diagnosed that we were the only one. I actually read it was RARE! I went to one specialist who alone has 400 patients with v.v./vulvodynia. THAT is NOT rare!I was just positively diagnosed April of this year but have been suffering for almost a year. I think I have had v.v.s for a shorter time than anyone else on here but I am not sure
CommentI have had vv for 5 years and finally found relief last year using topical Estrace cream. But now I'm 3 mos. pregnant and can't use it because of the risk of birth defects---argh! The pain is already returning since I've had to stop using the med. I'm wondering if anyone knows if I can request a c-section to avoid further trauma to the vaginal area? I can't imagine how bad the pain will be by the time I deliver and enduring hours of manual exams and tearing and scarring in the vaginal area may cause more vv problems that I've ever had. Anyone have any wisdom about this?
CommentTo Dana; Read past guestbooks, 14 on up. Several other women have posted on this topic of concern. Many doctors will not agree to a c-section because pressure from insurance companies. There is also the risk because it is a much more invasive procedure. Much to be considered, from what I remember symptoms did not get worse for those who delivered vaginally. My wife had three pregnancies and episiotomies, she did not have recurrent tearing of the vulva until seven years after her last delivery so maybe it won't cause you more harm. Best of luck.
CommentI agree that emails are very often misread. It is virtually impossible to imply a tone without adding a million emoticons and I get bored with the smiley face sometimes! I've had a lot of experience with email list discussions during my university studies and have gotten myself into bother many times by being too quick to shoot off an angry reply (and then regret it). Let me tell you, I am a VERY opinionated person and a VERY proud feminist but it's not place or right to tell someone else how to live. If someone does respond to an opinion or an email in a way that you think is negative, who cares. It's not about changing anyone's mind, it's about sharing information. I don't want to read any nastiness here, I come here for inspiration and guidance!! Let's support each other ok? Best wishes, Shannon
CommentThanks for your feedback, Frank. I tend to agree with your answer, although I do wish there was an easier way out/around painful childbirth and this dreaded vv condition. I'm glad to see you still here on this site! It's been almost a year since I last posted, so I will take your advice and read guestbook 14 through the more recent ones. Take care!
CommentGeri - I really enjoyed your post and your points about the government. It's hard not to be cynical and totally suspicious about this, especially after everything we've all been through. For example, the 'antidepressent' that I'm on - Endep - many doctors have told me that it's not even used as antidepressent anymore because it wasn't a very good one but that it's used for vulvodynia and phantom limb disease. But surely there can't be enough of us to justify the continued production of it?? After seeing a naturopath last week (who wasn't overly helpful), I've made the decision that I am never going to see another doctor, and will never, ever submit to another pointless examination. I'm doing this my way, with the support and advice of people that have been there. I am finally going to listen my body, because it's screaming to be heard. Best wishes to all, Shannon
CommentDoes anyone have any tips on how to choke down Grapefruit Seed Extract. YUCK!!!! I tried holding my nose, but that doesn't work and even in apple juice it leaves a horrible after taste.
CommentCandi- Thanks for explaining to me how the citrate in calcium citrate helps. I've been on the low-oxalate diet now for about two weeks but just started the citrate the other day. Haven't noticed any difference in the pain yet, but I' m not givving up. Looking over the list of high oxalates was like reviewing a list of everything I eat everyday! And giving up coffee was tough, not because I was hooked on the caffiene, but because it was such a relaxing part of my day. I drink alot of apple juice now.
CommentTO CANDI--Whenever I take Grapefruit seed extract I put in and empty gel cap(you can get those from a health food store) and drink a glass of water w/it. That way there's no nasty taste!
CommentKimB-Thanks for the advise. I wanted to get the straight stuff instead of the powdered caps because I figured it would be better, but wasn't prepared for the taste. So the straight drops in gel caps works well? I dread the next dose! Ewwwww! Jeanne- I have read that it takes anywhere from 3 months to a year to notice a change so don't give up. It's not an over night thing. I have been on the diet for about 2 weeks now. I ate some Chinese food last week and thought I was ok since I just stuck with meats and rice, but I guess MSG is BAD. I woke up in the middle of the night burning so much worse. That was on a Wednesday. The day before, Tuesday, I felt better than I had in almost a year. Now it's almost that time of the month and I always get worse about a week before. Still waiting on my Ox-Absorb. Just make sure when you add new supplements do them one at a time and let your body get used to one for awhile first and then another. Also with the medium ox foods, which you shouldn't try to add for quite some time, make sure you add them one at a time and eat that food for 3 days in a row so you will be able to tell if you have a bad reaction form it. My big thing was tomatoes and tomato based foods. I feel like I am going to starve! But I will be more ok with the whole new way to eat when I get my Lox Ox Cookbook, just waiting for it to be shipped. DON'T GIVE UP! All good things come to those who wait!
CommentCANDI--The gel caps work well w/GSE as long as you take it right away!
CommentDear Ladies,I have been seeing a health kinesiologist for vulvar pain. It is truly amazing. Health kinesiology takes into account the whole person, not just where the pain is. It seems to me that after 21 guest books and many unsuccessful treatments, orthodox medicine is not really the answer. How many chronic diseases do you know that are actually "cured" by orthodx medicine. None. The symptoms are merely managed, and the individual heals him or herself from it. So, my advice is to seek a health kinesiologist. Go to subtlenergy.com. This practice is way more integrative than even accupuncture. The practioner uses your body to let you know what you need to heal...whether it be nutrition, detoxing etc. There is no guess work or endless tests. Using your body's own energy, the practioner is able to tell you what your body is telling the practioner....that you need a detox, certain supplements, energy balancing. It took me a while to really look inside myself and face things in my life that were no doubt contributing to my problem. Clogging my liver with endless different drugs was not the answer. Stop and think and look at your life. That's how I found my way. stephanie
CommentSTEPHANIE-Just a few questions about your post that I am sure a few others will want to know as well. How long have you had vulvar pain and how long have you been practicing Health Kinesiology? Have you noticed much improvement or total improvement in your pain? I have recently just accepted the fact that all of the GYN's, MD's and dermotologists in the world can't help me. I have stuffed my self with pill after pill and applied topical after topical for almost a year. All I have had is negative reactions. I KNOW I eat badly and it's no surprise that it finally took it's toll on my body, right before my 30th birthday to top it all off. Not everyone will agree with you as to this "alternative" approach and everyone is entitled to their opinion, but it is really my last and only resort. I refuse to continue on the same path as so many who post here have. I can't go for the next 5, 10, even 20 years paying doctors who can't help me and KNOW they can't help me but just won't say it because I am a little chunk of their salary and somewhat of an experiment to the medical community. Thank you for posting and I am looking forward to finding out how much relief you have had in your pain since your break from the so called "normal" medical approach. Your post just confirms my feeling that I am headed in the right direction in becoming pain free. You are the 3rd person who has had success with this approach (or so I am assuming unless you post otherwise about your pain).If you haven't done so, you should scroll through this and the last half of the past guestbook and read Wendys posts. Also, is it ok to e-mail you at the address you posted above?
CommentI have had pain for 4 years and since health kinesiology, on and off pain but reduced 60 percent from original pain which was ungodly really. But, even with pain now, my vagina looks pink and healthy most days...but details and means to an end is not really the point. I have such faith in my path that any pain is just mildly irritating and doesn't deter me from any activities. My system is extremely toxic, I was not very careful with oil paints for about 10 years. But, mostly it's emotional toxicity. The day before the pain started I broke up with yet another "bad" guy. That was the last straw. I am a very intuitive person and new that when the pain started it was something other than a stubborn yeast infection. Yes, you are on the right path. Trust your instincts. You may email me if you want but only you can help you. Stick with your path and trust your intuition. Scrambling for answers from someone else will only frustrate you. If you have faith in what you are doing...the right way just appears.
CommentI haven't been on the Guestbook for a while, however I wanted to share with all of you some insights that I have had. I am one of people that has contacted Wendy lately, and I must say if you haven't you are missing out! She is a great resource and seems to have really beaten this thing!! My symtoms started over 7 yrs ago due to what I am convinced was a allergic reaction to a birth control shot I took over seven years ago. My symptoms started almost immediately afterwards! It has been hell since! In taking to Wendy she asked me a series of questions and I am now taking Olive Leaf pills and adding GrapeFruit Seed Extract to my water throughout the day. I am also taking Calcium Citrate with Magnesium and trying to follow a low Oxolate diet. It is to soon to say that I am pain free, however I truly believe that all of us suffering from this have expereinced some type of event that triggered this thing, and this has made our systems more sensitive to things like yeast (candida) and oxolates in the foods that we consume. I have found a web site that explains how a simple test that you can do at home will determine is you have a yeast problem in your body. It is as follows:This simple spit test can determine if you?re actually battling candida. First thing in the morning, before you put anything in your mouth, get a clear glass of water. Work up some saliva, and then spit into the glass of water. Check the water every 15 minutes or so for up to one hour. If you have a candida yeast infection, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or ?cloudy? saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If nothing develops in an hour, you are probably candida free.I have taken the test and I have Candida! I am not saying that candida is the only reason some of us suffer, but I know that it is a contributing factor. I also like some of you who have posted lately had a serious ovarian cyst problem and have just had surgery to remove a cyst on my right ovary that was the size of a hudge grapefruit! I know that this didn't help things. Since my surgery my pain has been out of control! They pumped me up with so many antibiotics my system is out of wack! I guess what I am trying to say is that all of us are unique and have different factors that are the underlying cause, however following a low-oxolate diet and taking the supplements that Wendy is recommending I am convinced will only help, and start the healing process. I also believe that each individual may need to add additional treatments based on their history. If you suffer from lower back pain, then you may need to see a chiropracter as nerve or muscle spams may be adding to the problem. If you have tested low for estrogen, then maybe using estrace cream may help you.After seven years of this, I am at a point where traditional medicine is not my answer! I am going to follow Wendy's advice and see what happens. I am optimistc, and know there is an end in sight! Best of luck to all of you!!
CommentI haven't been on the Guestbook for a while, however I wanted to share with all of you some insights that I have had. I am one of people that has contacted Wendy lately, and I must say if you haven't you are missing out! She is a great resource and seems to have really beaten this thing!! My symtoms started over 7 yrs ago due to what I am convinced was a allergic reaction to a birth control shot I took over seven years ago. My symptoms started almost immediately afterwards! It has been hell since! In taking to Wendy she asked me a series of questions and I am now taking Olive Leaf pills and adding GrapeFruit Seed Extract to my water throughout the day. I am also taking Calcium Citrate with Magnesium and trying to follow a low Oxolate diet. It is to soon to say that I am pain free, however I truly believe that all of us suffering from this have expereinced some type of event that triggered this thing, and this has made our systems more sensitive to things like yeast (candida) and oxolates in the foods that we consume. I have found a web site that explains how a simple test that you can do at home will determine is you have a yeast problem in your body. It is as follows:This simple spit test can determine if you?re actually battling candida. First thing in the morning, before you put anything in your mouth, get a clear glass of water. Work up some saliva, and then spit into the glass of water. Check the water every 15 minutes or so for up to one hour. If you have a candida yeast infection, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or ?cloudy? saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If nothing develops in an hour, you are probably candida free.I have taken the test and I have Candida! I am not saying that candida is the only reason some of us suffer, but I know that it is a contributing factor. I also like some of you who have posted lately had a serious ovarian cyst problem and have just had surgery to remove a cyst on my right ovary that was the size of a hudge grapefruit! I know that this didn't help things. Since my surgery my pain has been out of control! They pumped me up with so many antibiotics my system is out of wack! I guess what I am trying to say is that all of us are unique and have different factors that are the underlying cause, however following a low-oxolate diet and taking the supplements that Wendy is recommending I am convinced will only help, and start the healing process. I also believe that each individual may need to add additional treatments based on their history. If you suffer from lower back pain, then you may need to see a chiropracter as nerve or muscle spams may be adding to the problem. If you have tested low for estrogen, then maybe using estrace cream may help you.After seven years of this, I am at a point where traditional medicine is not my answer! I am going to follow Wendy's advice and see what happens. I am optimistc, and know there is an end in sight! Best of luck to all of you!!
CommentSu-You sound just like me! I am lucky enough to not have been suffering for as long as most women who post here have, but I know if I don't take charge myself then I will end up years down the road still on the wrong path. We are taking the exact same supplements. I just added the grapefruit seed extract 2 days ago. I add things slowly so my body can get used to one thing at a time. I stopped taking my BC's exactly a month ago so I am sure my body is going through shock. I don't normally break out but have had some bumps on my forehead this past week and my skin is definately oilyer. I have been Elavil free for 5 days now and have realized a huge change. I normally sleep about 10-12 hours a night ( I don't work, thank goodness) and wake up still exhausted. I thought it was because I was getting TOO much sleep, but my body just wouldn't allow me to get any less. I took my Elavil right before bedtime as directed. I went to bed last night a little after 1am and I woke up this morning at 6:15, that's 5 hours and I am still up. I feel a little tired and my head feels a little achy and heavy, but I have been on Elavil so long that it's no wonder. I am trying my hardest to choke down that grapefruit seed extract as much as possible, but oh my gosh what an awful taste! I thought about the caps but I strongly believe that things in liquid form are much stronger and work better. I was going to take KimB's advise about putting it in gel caps but am worried because it says to not use full strength on the skin etc. and what is going in the gel caps is full strength and I am afraid of what it might to do my stomach. After all I have been through, I am afraid of everything these days. I also read about the spit test on a site selling something for cleansing the body of candida. Boy that stuff is expensive! I will stick to by bottle of GSE! I know it works because Wendy used it.
CommentHello! Since for many of us, yeast seems to have marked the onset of our problems, I have been (trying) to follow a yeast-free diet for the last seven days. The highest oxalate-containing substance I eat (a lot of) is chocolate, which also features on the anti-candida diet, and I've cut that out, too.I've noticed that the pain (a mild burning) I experience when passing water disappears after a day or so on the yeast-free diet. If, in a moment of weakness, I reach for the bread and chocolate, I find that within a few hours my symptoms return.I have only been doing this for just over a week, but it's fascinating to see a link between what I eat and how I feel.
CommentSu--The saliva test you mentioned in one of your posts is very intriguing, I would like to try it. Where did you hear about it, and do you happen to know if it's reliable?
CommentHi ALL, Just wanted to give you my latest update. Since using the dead sea mud and taking minerals NAG and chamomile and going on a yeast free diet my vulva skin has been turning a normal pink. it's only a little red and has been only low grade irritation for the week since i've done all this. I think I found my solution. I have been trying all sorts of things for 2 years but I feel this is my solution. I feel confident about it especially since I had Wendy to help me confirm my allergies. I wish for us all that we will find our own remedies.
CommentMiri-I am so happy to hear you are doing better! I wish so much I could meet Wendy. I just love her to death. Keep up the good work!
CommentHi everyone,I have posted a couple of times in the past, the last time was a couple of months ago. I was suffering from dermatitis, which i found out from a biopsy and also yeast problems, and a sore red patch which never healed. I have also been taking grapefruit seed extract for the past three months and an amazing product called natures biotics. These are soiled based organisms, my burning has totally gone and the dermatitis has almost healed, but i noticed that i had one red swollen sore bit which was not responding. I had an appointment at the vulvar skin clinic two days ago and i told the doctor about the sore bit. She thinks i may have an abscess as my bartholins gland has a lump, she wants to open that part up to have a look inside or drain away fluid or whatever. Has anybody had this and has anybody any advice on how i can get rid of this naturally. Any advice would we greatly appreciated. Thank you, and my love to everyone
CommentDonna-It is so great to hear that someone else is doing really well. I just started taking grapefruit seed extract. YUCK! I have not personally had a problem with an abscess, but I have read that there can be a blockage in the glandular area from blocked pores. Probably from all of these ointments and creams we have used. I have read about draining the fluid. I don't know of any natural way to take care of this, sorry, I wish I did. I have also read that in SOME cases v.v.s is caused by the glands having a blockage and that once it is drained the redness, burning, etc. disappears. If you find out any info on a natural way to take care of this please keep us all posted for anyone else who might come across this site and has the same problem. Let us know how it goes if you have to have it drained by the doctor. Success stories are what keep the rest of us motivated.GOOD LUCK!
CommentTO DONNA:Hi, just wanted to ask, the sore patch you refer to, where is it located on your vulvar skin? I have one too that has not healed. I had a biopsy done, but they did not take that tissue. My biopsy revealed Dermatitis too. Pleaselet me know and what they prescribed to you to treat the dermatitis. I am in my 40's how about you?Thanks for sharing info.
CommentTopical Tacrolimus Effective in Anogenital Lichen SclerosusLaurie Barclay, MDJuly 22, 2003 ? Topical tacrolimus is effective in anogenital lichen sclerosus, according to two case reports in the July issue of the Archives of Dermatology. Six patients in one series and another patient with vulvar disease had complete and lasting resolution with this treatment."Lichen sclerosus of the anogenital area is a chronic inflammatory and fibrosclerotic disease associated with substantial morbidity," write Markus Bohm, MD, and colleagues from the University of Munster in Germany. "Topical ultrapotent corticosteroids are currently the treatment of choice."In this series, three prepubertal girls, two men, and one woman received once-daily treatment with 0.1% tacrolimus ointment, which was well tolerated without major adverse effects. All had complete remission that persisted for up to one year. "Topical tacrolimus is a promising novel agent in the treatment of lichen sclerosus of the anogenital area," the authors write, while recommending careful long-term follow-up and controlled randomized trials. "A major advantage over topical corticosteroids is the lack of skin atrophy."The authors report no relevant financial interests.The case report describes a 19-year-old woman with vulvar lichen sclerosus refractory to topical diflucortolon-21-valerate and to oral chloroquine with topical estrogen and/or 0.025% tretinoin.After six weeks of topical treatment with 0.1% tacrolimus ointment twice daily, pain and burning sensations had disappeared. She was able to resume sexual intercourse by 12 weeks of treatment and had complete resolution of visible lesions by 16 weeks. Treatment was discontinued after six months, and she continued to be asymptomatic one year later. There were no reported systemic adverse effects."Topical tacrolimus for the treatment of chronic T cell-mediated inflammatory skin diseases has shown significant efficacy and an excellent safety profile with few notable local adverse effects and a minimal risk of systemic adverse effects," writes Franz M. Karlhofer, MD, from Vienna, Austria. "Topical tacrolimus could serve as a potent, long-lasting, and safe addition to the armamentarium
CommentCANDI-I said to take the GSE in a gel cap w/a glass of water. There is no difference between putting the drops in the water and putting them in a gel cap along w/drinking the same amount of water. Your body doesn't know the difference. Your not supposed to put it full strength on the skin b/c of the acidity. Its a totally different situation putting drops of GSE on you skin full strength. By drinking the water w/the gel cap you are diluting it. I just don't want you to hold back on treating yourself if this is something you feel will help you-don't be worried. I had posted a couple of weeks ago that GSE can cause some of us sensative people to burn more. It did w/me but wasn't permanent, as soon as I stopped or lowered the dose the burning lessened(back to the way it was prior). I also wanted to add that I went to Chicago to see Dr McNett in May b/c I also have systemic yeast(Candida). I am taking Nystatin, along w/the yeast/sugar free diet and I am gradually improving, that includes the vaginal burning. Laurel was the one that mentioned him and she improved to where she could have intercourse. I am assuming she is doing very well b/c she hasn't been posting here. Just some more info to consider. I remember reading her post and thinking "I am going to go see that Dr. b/c I know it will help me" so that day I called and made an appointment. It feels really good to find people that will help you and I was lucky it was only 4 1/2 hours away(I'm in Michigan). I am just greatful for these posts b/c thats how I got on my road to recovery after 6 years. Take care.
CommentKimB-Yeah, leave it to me to not even think about the glass of water I was taking with a gel-cap. My mom always told me I was a smart girl, but I had no common sense. Hehehe
CommentI definitely fall into the "something significant happened to me right before I got this" category. The month preceding my first flare-up I was experiencing major relationship stress. I had been with the love of my life for just a few months but it was bringing up major things in me. My insecurities and jealousies were running rampant - I had never experienced any feelings that bad before and they were just taking over. About two weeks before this came on, I read some old love letters belonging to my boyfriend - letters between himself and his former flame. It gutted me. Even though I rationally understood that it was over, it still hurt. And it was so compulsive too, I just had to do it, but I had felt nauseous afterwards. Just like a food binge. Anyway, I confessed two days later and he was really understanding and we got on with things. But then the NIGHT before I got my first vulval infection, I got drunk and read his diary from a few years before that contained all his thoughts and feelings right after a breakup. It killed me. I was so sick the next day I could hardly stand and it was the day we were moving from London to Brighton (on the UK south coast). IT WAS THAT DAY THAT THIS STARTED. I can't ignore that and have spent the last three years working on those issues to get those horribly toxic feelings out of my system. You guys must think I'm a fruitcake for doing what I did but I just went a little crazy for a while. And if my story gives someone else a lightbulb moment, then I'm more than happy to share it. Ever since that time, my partner and I have brought everything out in the open and I even found the courage to share my feelings of insecurity and jealousy with him. Very scary at first. I am now at a point where I feel that those old feelings are all in the past. Now it's just the physiological reaction to those feelings that I have to heal. I've been on the low oxalate diet and have been taking Calcium Citrate for the past few weeks. Just yesterday I started taking Ox-Absorb and rubbing vitamin e gel (from the caps) on my vulva after urinating and there's definitely been a reduction in burning. I had a blow-out today though. I went to the movies after class and pigged-out on lollies (I think you Americans call them candy) and, that old burning feeling is back tonight. But it is good to see such a definite link between the sugar and the pain. I think setbacks are just as important as staying true to the diet because it reminds you why you're doing it in the first place. Best wishes, Shannon
CommentTo Shannon: I happen to think you are just fine. You are working through a very difficult time in your life and your reactions are perfectly normal. I believe we give memories both sad and happy their power and life. I make a conscious effort to remember the good more than the bad. Why torture yourself with unhappines? Strengthen your immune system and relationship by being a person who chooses to remember the good. Enjoy the present and look forward to the future. Sounds like you are on the right track. Best of luck.
CommentShannon- unlike you, there was nothing significant happening in my life when I first got VV. I was happily married for 14 years then, never had a urine infection, seldon had a yeast infection, and hadn't had sex for at least two weeks. I just woke up one day with severe VV. About a month ago, a year and a half after trying creams, shots, and surgery, I woke up and the VV was totally gone. However, later that day it appeared inside my vulva area. I am managing that with a low-oxalate diet and calcium citrate. It's only been about 3 weeks on the diet and just a few days on the caltrate, but the oain seems to be not as bad. My diet previously had been all high oxalate foods. I don't know how long the pain will be minor like this. I haven't tried sex nor wearing tight pants yet. And I don't want to because I know it's just not right down there. I'm 47years old and have had this for about three years. But I'm not giving up hope! Oh, and I no longer wash with any kind of soap down there.
CommentHi Shannon, I too believe the emotional component had an effect on me. Afterall this is a freaky thing to happen to a vulva and I think your system has to be extremely out of whack for this to occur. And I think the only way to reverse it is to eat extremely healthy and be extremely healthy. Up until now I thought as long as I did everything in moderation I was helping myself but now I see I have to be extreme about this to heal.
Commenthi marie- the bartholins gland is on the inner part of the labia situated on each side, hard to describe, if you go into google or yahoo search site and type in bartholins gland cyst or abscess you will get a lot of websites explaining indepth where exactly it is and what can be done. None of the specialists i went to noticed this until i pointed it out. As i said i have a small red swelling on the right side which is a bit like a spot but with no head. What you can do to tell if there may be a cyst or abscess is to lie with legs flopped on either side, feel the normal side with no soreness, my left side feels quite flat if i prod with fingers around that area, the right side feels differently, there is definitely something inside there, the doctor said it feels slightly larger that a tic tac. This area will also respond to no creams etc. As for the dermatits i have been prescribed trimovate and hydrocortisone. I would personally never again put any creams or steroids in this area as i believe that they make any skin conditions worse. Canesten cream first gave me the dermatitis. To help that i do not use any soap on the vulva., i use a wash funnily enought made my canesten, it is quite new, it is soap free and fragrance free, i mostly just wash most of the outside with this. I do not put my underwear in the washing machine, even soap powder designed for dermatitis irritated me, i now just handwash all underwear with a very small amount of dove extra sensitive soap, then i rinse, rinse, rinse, this has really helped. I have just recently stopped using sanitary towels and have gone back to tampons , using a lubricant made by durex which is exactly like female secretions. I do not use k-y jelly at all as this also irritates me a lot. Please let me know how you get oneLove donna
Commentforget to say i am almost nearly 34.
CommentShannon??Please excuse me, I have been meaning to respond to one of your earlier posts for ages. But I?m finding it very hard to condense four years of pain, and all my theories into something into one paragraph! I also find it hard, reliving it all. Still, I wanted to say that I think it?s entirely possible that the emotional trauma you experienced helped to bring on your symptoms, or at least weakened your immune system. I think the power of the mind is greater than we think. Whilst hunting around on the Internet for a herbalist recently, I discovered the UK Health Service now provide laughter clinics in some hospitals, as they?ve finally recognised that laughter can speed up a patient?s recovery (I?m sure they?re already do this in other countries) ?? and it seems to me that, if laughing can make you better, it is equally possible that negative emotion can make unwell in the first place.
CommentHi all. Thanks for the kind responses to my "confession". :) Miri, I really liked your point about something extreme bringing it on and something extreme being needed to get rid of it. I absolutely, 100% agree that my negative feelings played a very big part in bringing this problem on - that's why I posted them. My body literally went into shock at that time. But I also appreciate that significant events don't trigger it for everyone. Believe me people, my relationship is so healthy now and it's only because I let myself feel those feelings and my partner was willing to work through them with me. He knew that I was madly in love and loved me enough to soothe me as best he could. At first he got a bit tired of it (who wouldn't) but after I made it clear that the only way I was going to be able to deal with it, was to talk about it when I needed to, he let me do that and now I'm fine. Frank, you're right though and I don't dwell on negative memories. I understand why I went through that time, and I don't beat myself up for it especially because I've worked so hard to turn that negativity around. I can honestly say we have the healthiest relationship in the world now. Despite the vvs, we have a fantastic time together because we've refused to let it beat us. Best wishes, Shannon
CommentBy the way, can anyone who is on the low-oxalate, low yeast diet give me any advice on breakfast? I'm stuck! Toast is out because bread is high in yeast, so many cereals are full of sugar and yoghurt is dairy - which is bad for yeast isn't? Help?
CommentMy best friend was just dignoised with Vestibulitis and is about 20 wk pregnant. She is very depresed about this condition and has not found any treatments that wont effect her pregnancy.Can anyone provide me with any info that may help her or any ideas on books or anything that I can get her as a "pick me up" gift.
CommentSHANNON--I am on the yeast free diet and it you want toast get bread from a health food store. They have yeast/sugar free bread like Kamut or Spelt. You can find more things to eat at a health food store usually b/c they have food specified for certain diets.
CommentShannon, yogurt is a good thing when it contains live yogurt cultures (acidophilus).
CommentThanks Kim and anonymous. Much appreciated. :)
CommentYogurt should be unsweetened(plain) while on the yeast free diet
CommentShannon,I've been having brown rice cream for breakfast with hazelnut milk. It's not the most exciting food in the world but it fills me up. I can tell i will lose a lot of weight cause if i can't have sweet stuff i just don't want to eat:) How is your diet going?
CommentFor Donna:thanks for your info, I believe that my sore spot relates to the batholin (sp?) gland. I researched it on the web, and I am going to have this check by my gyn. I appreciate all the advice and will follow it. I hope by our following no soap, etc. it will help. I am 46 a lot older than you, so estrogen may not be part of your problem, as I believe it is part of my problem. I hope we both find solutions to end this misery.Thanks.
CommentJust a couple more food ideas--I slice up a banana and get real whipping cream(you have to whip yourself) and have a bowl of that for breakfast if I need something quick. I know some people cant or wont have dairy but for those of you who do it's a sweet treat. Real whipping cream doesn't have sugar. If you have time you to cook another good meal is eggs. I make eggs w/spinach and tomato(I'm not doing the oxalate diet) and a little cheese, or I put peppers in them. If I make fried eggs I put it on a slice of Spelt bread w/moz. cheese and pepper slices.
CommentShannon??I?m (supposed to be) on the yeast-free diet right now, and am finding it a bit hard to combine with the low-oxalate diet, as sometimes it seems as if there?s nothing edible left! So what I?ve done, is cut out my main high-oxalate culprit, chocolate, and other than that I follow the anti-yeast diet. They seem to cross over a little bit, and it still seems to ease my symptoms. For breakfast I?ve been having porridge made with water instead of milk. (But I have a feeling that the oats contain oxalates). Other breakfasts recommended on the anti-candida diet (I?ll leave it to you to work out which ones don?t fit with the low-oxalate diet, as I get a bit confused!) are: two eggs, any style except raw; bread (with no yeast or sugar) with butter and olive oil, brown rice kedgeree (with fish), wholewheat or rice and oat pancakes (no sweetenings); natural live yoghurt or ?virtually fat-free? fromage frais, to which is added a spoonful of cold-pressed flaxseed oil: blend well and add linseed and other seeds. (Taken from CANDIDA ALBICANS: THE NON-DRUG APPROACH TO THE TREATMENT OF CANDIDA INFECTION by Leon Chaitow). You can probably see why I went for the oats and water! All this is making me hungry ?? but unfortunately not for linseeds and yeastless bread ?
CommentMiri and KimB, thanks for the food ideas! I have been eating alot of tuna wrapped up in romaine lettuce leaves, one of Wendys suggestions.But I have no clue waht to eat since wheat is out and I lived on tomatoes and tomato based products. I dread the grocery store. I'm not doing the candida diet, but try to stay away from as many of those foods as possible. I just try not to overload on anything that feeds yeast.But if I was doing both diets, I would starve. I've been eating alot of eggs too, which I hate. Shannon, when you finish the time on the candida diet, you can eat vanilla yogurt, its much better than the plain. Vanila is one of the little extras on the ox diet. KimB- Is Spelt wheat free as well? And does it taste alright? If anyone else has any suggestions on food so we don't become annorexic I know alot of us ladies would appreciate it very much! I don't think I am ever going to receive my low ox cookbook. Shannon-Have you noticed any difference from starting on the Ox-Absorb? Mine is being sent tomorrow finally, so it should be here Monday. My next door neighbor works for a drug distributor so he is going to see if he can order it for me. The owner is really cook, he was dying of bladder cancer and was told to get his affairs in order, he heard about coral calcium and started taking it, it's 3 years later and his cancer is still in remission. I tried it for the v.v.s. but saw no results. Well ladies, thanks again for the food tips, now I'm craving bannas and whipped cream.
CommentCandi,Oh My God, you weren't kidding, that grapefruit seed extract is nasty!!! I wouldn't take it in pill form though as the nutritionist at my health food store said it is extremely acidic and would burn the insides unless it's diluted. so i'm sticking with the putrid water method:(
CommentMiri- I asked WEndy about it adn she said when she used it she would just put 5 drops in water each time and just drink it through out the day. It says 2-3 times a day but f you just use less each time then you can drink it more often than that. It's a little better than 10-15 drops each time. I just get a bottle of spring water and put it in the freezer to get it really cold and it's not as bad. You can still taste it, but it's not as strong. I was watching that show Fear Factor on Monday night and they were drinking blended worms and roaches and I was drinking grapefruit ext. and I was like, yeah I bet what I'm drinking is nastier than that even! Hehehe!
CommentCANDI--Spelt is wheat free. So is kamut, buckwheat, quinoa, ect. I'm not sure about oxalates on these though. I like the taste of them as long as I eat them w/butter or with a chicken sandwich or something. You can tell they don't have sugar in them. You will probably only be able to find them at a health food store, at least the sugar free kind. If you fry some chicken breast and have it with a couple slices of red pepper(I think thats low oxalate) and have w/some kind of the bread above it tastes good. The book I have is yeast and allergy cooking made east so all the grains are wheat free. I've tried the low oxalate diet but now that I am on the strict yeast diet I don't think I could try it at again at this point. I'm not really leaning toward it being my problem anyway. The diets that we try to help ourselves get better are alway hard at first, but after you stop eating a bunch of processed junk you don't really want to go back. I am past the point where I crave most things that I ate before. I can still have chocolate sweetened w/malitol(I know chocolate is a no for you oxalate girls). I thing if I couldn't have that then I would go crazy on my diet. I have to cook almost everything and it has to be from scratch and organic, but I do feel better the longer I am doing it. I only crave fried potatoes that I usually make w/my eggs. I'm also used to eating vegetables ALOT now and not so much fruit. It really isnt bad. The thing that helps me the most is my cookbook, I would be lost w/o that thing for all the food ideas.
CommentHi, I have had vulvodynia for 5 years now. If I had a dime for every remedy, or every medication I tried for a cure or just some relief, I would be a wealthy woman. My family Dr. who is an internist, has diagnosed me with Fibromyalgia. I also have Burning Mouth Syndrome and my Dr. said the vulvodynia and the BMS is because of the Fibromyalgia. So you see I am washed up. I pray for a cure every waking moment. If there is anyone who can shed some light for me, please write. Thanks
CommentLINDA-Isn't BMS a symptom of Candida(systemic yeast). I have Candida and went to a clinic that treats specifically for Fibro, but they also treat for candida. They have found that many of their patients w/Fibro are greatly improved or cured with Candida treatment b/c in some cases they are one in the same. Just wanted to know if that was something you ever looked into, ecspecially w/BMS and vulvodynia as your symtoms
Commenthello everyone!I am 22 and was just diagnosed with vulvodynia/vestibulitis last week, it has been about 1 year straight since I have been able to have sex with my boyfriend of 4 years, and it is certainly taking a toll on our relationship. My doctor prescribed elavil, I am suppoed to take 10 mg three times a day and increase it by 10 mg every 2 weeks until I take 40 mg/3 times a day. Does that seem like too much to anyone? Also, does it work? WIll it stop working eventually? My mother has fibromyalgia, and I am wondering if I may develop that eventually too, does anyone else have relatives with related disorders? I also have recurrent yeat infections, nothing seems to prevent them. In addition I have a herniated disc in my lower back from gymnastics, and Im wondering if this is related? I read before about someone inserting acidopholus pills in their vagina, has anyone else tried this?
CommentElizabeth- I just weened myself off of Elavil. It didn't do me any good. I have been reading that v.v.s. is a symptom of Fibromyalgia. But you can also suffer from vulvodynia if you have recurrent yeast infections. I'm sure your doctor has tried giving you a ton of Diflucan or something similar. that is taking its toll on your liver. Funny how most doctors won't tell you that though. I had one that actually did tell me. Try some grapefruit seed extract in your water. You can get it from your health food store. I got a 4oz bottle for $18. You can put even 2 drops in a bottle of water and just drink it throughout the say. I can handle the taste of 5 drops and so I drink that 3 times a day. It is the most horrible taste ever, but the more I drink it, about a week now, the less I notice the taste. It's natural and some people are just immune to anti-fungal medications your doctor will prescribe. Go talk to someone at a health food store. Also maybe you should try taking a probiotic by mouth. Make sure you get an acidophilus that is kept refrigerated and that also contains bifidus (some bottles may say bifidum, same thing). Just because you have yeast in your vagina does not mean you should treat ONLY your vagina. When you have a vaginal yeast infection it is because you have too much yeast in your system and then it shows itself in the vagina. You can also douche with the grapefruit seed extract. It may irritate some women, but I know someone who had bad yeast for years and she is very sensitive to anything touching her and it didn't bother her. Just follow the directions on the bottle, or the handout that you can get from the health food store. I have GSE by Nutribiotic. It comes with a little handout on how many drops to use with so many oz.'s of water. Try the yesst free diet as well. There are a few women on here that are on it and can give you some tips. I am only on the low oxalate diet and just try to eat as little foods as possible that will feed yeast. Just to be safe. I have had v.v.s. for a year as well and it is hard. Maybe you and your boyfriend can try some couples therapy. go to someone who is farmiliar with our condition. Your OBGYN may be able to recommend someone. Intercourse isn't the only way to be intimate. Just so little men care to see that these days. Can you imagine how they would feel if we just took off and left them when they got to the point where they couldn't have an errection anymore? But they don't think of that. Keep the faith, there are things you can do, but don't rely on only your doctor to make it go away. Do research on your won. Try natural forms of things. Your body will thank you for it. I won't tell you to stop taking the Elavil. That's not my place. But if it doesn't help your pain, like it didn't help mine then what's the point in taking it? And the makers of Neurontin are being sued so maybe you shouldn't try that. My doc wanted me to and I refused. It's an anti-epileptic, I dont have seizures. I know their reasoning behin all of these anti this and anti that they keep handing us, but for example, I don't have seizures NOW, but whose to say that I won't start having them if I take something like Neurontin and then stop taking it? Go to your health food store and talk to someone about your yeast.
CommentElizabeth-Also you might want to get some Olive Leaf. Here is a link so you can read about it. http://www.life-flo.com/oliveleafplus.htmlI take it in capsul form.
CommentI have read many of the past posts in the past 2 years of having this problem and some have them have been helpful, but after trying many doctors and different medications I have had to do a great deal of soul searching to try and figure out the cause of this problem. And like many of you, I am still searching. I have read that many of you have burning and itching. I do not have this. I just have pain, it doesn't burn or itch it just hurts. It starts at on point on the inside of the vagina and it travels down to the outside only on one side. Estrogen creams help greatly, as I am peri-meno ( I am sure this is part of the problem), but over time they do not help completely and more and I have had to use such a large amount that I have to take provera 10 days a month to protect my uterus. The one thing I have noticed that I have in commen with some of you is that this was all triggered by an infection. The infection was miss-diagnosed by 2 doctors each giving me different medications that served only to burn my skin. I even had one doctor tell me to use a vinager douche, boy what a big mistake that was. After the problem was properly treated, I would not heal until I was given estrogen. I then found that I cannot take estrogen orally and with the creams I do have some side effects. I do believe that my problem has something to do with lack of estrogen and nerve damage from all the treatments. Six days ago I started taking Elavil 25 mg. I already feel better, but the side effects may keep me from using this medicine. If anyone has any suggestions or insights I would be greatful to hear them. Thanks.
CommentP- The problem with anti-depressants like Elavil is, one medication dose not fit all. You may have to go try a few before you find one that is right for you. I first took Pamelor and the side effects were a nightmare. It had a complete opposite effect on me than what it was intended to do as an anti-depressant. I would zone out for who knows how long, I was incredibly depressed and I lost a ton of weight. the Elavil gave me no problems other than I craved sweets all the time and even though I took it only before bedtime, I was finding it VERY hard to get up in the morning. The only way I can describe it is that my brain felt heavy and so tired. It helped with the upset I feel because of the pain but didn't help wiht the pain at all. I have been off of it for over a week now. I'm through with taking any "chemical" drug what-so-ever. I supposedly had a bacterial infection for 8 months right before I got this. They tried me on so many different things. The pain I have started a week and a half after I quit taking the Flagyl. The doctor who did my biopsies told me that I may never even have had a bacterial infection in the first place, that there are wuite a few doctors who cant correctly read what they see under a microscope. He even asked if I had been on the Flagyl right before I got this. I didn't know enough a year ago to even ask him why he asked me that. Just goes to show that some doctors may suspect that certain drugs may be the cause of the onset of all of this, but by that time it's too late since they apparently can't reverse the damage that's been done. Heres an article I came across yesterdayhttp://www.messengers-of-messiah.org/pipermail/health/2002-November/000293.htmlNow if something as simple as Tylenol can damage our liver, then what is all of these medications our doctors are giving us doing? I know I have always taken more than what was directed on the bottle of Tylenol or Advil. I worked as a pharmacy tech for a long time so I knew that I could do that. I would just take as much as what a prescription strength would be. As far as your Elavil goes, if you aren't feeling right on it, talk to your doctor. there will be something out there that will fit you. i personally will never take another ANTI-anything again. I read somewhere not too long ago, and can't remember where, that they are now starting to link anti-biotics to ADHD in kids. They are seeing it more in children who had chronic ear infections when they were smaller and who were given oral anti-biotics. But there is way too much money being made for the production to stop. People will continue taking anti-biotics and anti-bacterials and who knows what damage is being done because of them. I think some of us are seeing some of the results of what they can do.
CommentHello, I have been wondering about this for many years and think I have finally found out what my problem is (in part). I am 30 yr old mom of three who has never had an intercourse experience that wasn't excruciating. My husband and I have been together for 12 years. It has been very difficult and I think very frustrating for him. I started my periods early ( 10 1/2 yrs) and from the first time I put a tampon in it was just horrible. At 21 I was diagnosed with stage four endomtriosis. Three C-sections later and MANY, MANY laparascopies later we finally opted for the total hysterectomy. I thought that this would greatly help the pain with intercourse. Unfortunately most of the penetration pain is still there. After reading about VS I think this may have been a large contributing factor from the very beginning at 10 years old. I am frightened to have sex and don't know where to go from here. The last time we tried to have sex I threw up on the bed because the pain was so bad. Talk about a damper on the romance. I just want it to go away. I am afraid my husband would not take "one more thing" about my health too well. I checked the list and we are hundreds of miles from the nearest VV specialist. ho hum. well thanks for having the list, shedding some light onto things and for allowing women to vent. I grately appreciate it.
CommentI think the thing that upsets me the most (after having pain 24/7) is the attitudes of men. I mean are WE not the ones suffering from the pain of a condition with no known cause or cure at the present time? They seem to act like sex is the most important part of a relationship. It isn't. It's just an added benefit. I was laying in shear agony all night long with menstrual cramps that hurt so bad that I swear I hadn't felt pain in my abdomen like that since going into labor with my son. I just quit my BC's a month ago so I guess they really DO help with keeping cramps at bay for the most part. As I lay there in pain I wished just for a second that only a single man could experience all that us women go through all of the time. PMS, Menstruation, CRAMPS, childbirth and even V.V.S. Then maybe they would think twice before getting upset when they cant have intercourse. Or just a little wish that they would not be able to get an errection for about a month and see how it feels to desire us and not be able to do anything about it and then I think we should gripe and complain that we can't have any because of their condition. Men can be so clueless. I thought marriage vows said for better and for worse, through SICKNESS and through health. I guess to some, those were just words. Thank God my hubby is satisfied with other ways to be pleasured. He feels more upset at the fact that there isn't a doctor in the world that can help me and that I have to rely on myself and my friend Wendy and her advise. For being the "stronger" sex, men can be so weak.
CommentOkay Candi you are right for how you feel concerning men. Sounds like you are married to a good guy and I'm happy for you. Let me just give you my thoughts on pain and sex and men. I've been through seventeen surgeries for abdominal blockages due to scar tissue and ruptured appendix over the course of my fifty years. I've have kidney stones and the pain that goes with them. No, men do not suffer month to month with menstrual cramps and no man suffers from vulvodynia. I'm not making a case for that, however just as we can't fully understand your pain you can't understand sex from our perspective. For me it is a very strong driving force even at fifty and with my daily aches and pains. Aside from the physical pleasure on my end I derive extreme pleasure from giving pleasure. That's where part of the problem lies, when my wife is sore, burning, itching and in pain which is often I am not just frustrated because I can't be with her vaginally. I am upset because her pain is stopping me from giving her pleasure, which fulfills another part of me. I wish she and all of you did not suffer and I wish we could all express the love and desire we feel. Maybe someday.
CommentFrank, You've got to be kidding. Trying to compare not being able to have intercourse to being in excruciating pain 24/7. And then telling people they don't have a right to their feelings. What are YOU doing on this website anyway?
CommentPlease someone help me,I feel like I am the only one who had used Crisco who was not helped. After about a month of using it everyday as a lubricant, I began to develop bumps on my vulva area (two very tiny ones) and I began to itch. Before my only problem was really the burning with only occassional itching but now I have itching everyday all day around the clitoris. I believe the oil caused an infection or irritation since I had not been using anything else different. I wonder if anyone else has had negative effectives from Crisco and if they have how long does it take to heal from it? It has been a month now since I stopped and the itching around the clitoris is still there. I do not use creams or ointments, I do not use soap on the vulva area (only warm water) and I use chlorine free water and tiolet tissue. I use only cotton pads and underwear, undyed and unscented, as well as unscented detergent rinsing everything two or three times. I have done everything. Could the itching be due to sugar and carbs like I have been reading? Could I have yeast at the clitoris? Please someone help me or I will think that I am crazy. Sharon
CommentKaren how did you read that from what I wrote??? No where did I say anyone wasn't entitled to their opinion and by the way that includes me. I in no way tried to compare 24/7 suffering to my sexual or emotional frustration. That would be cruel and insane; I am neither! I attempted to express the feelings of a man who loves his wife and is feeling the drive of sexuality and the frustration of not being able to either give her pleasure or relieve her PAIN. Reread what I have written but do so with love and kindness in your mind and heart, not with hatred. YOU ARE WRONG!!!
CommentTo Karen: I left out the most important response to your nasty post. I am here for several reason, they are. Gather and exchange information, give advice if appropriate from a man's perspective. Finally and most important I am not only a husband but the father of two daughters. I don't want them to suffer from vulvodynia in their lives so I am here for THEM.. Do I need to be a woman to care about my daughters?Do I need to be a woman to be compassionate? How many women do you know who do not suffer from vulvodynia but contribute here and CARE? Accept caring, love and thoughtfulness wherever you can get it and hope it spreads.....
CommentFrank-I agree w/what you are saying. I think alot of women just don't understand or don't realise that some men do want to be here to help, not for all the crazy things that some of them come up with. I think that some of us need to stop "blaming" men or saying Oh they don't know what it's like. Well no they don't truly know what it is like but there are problems out there that men can have(or women) that none of us can relate to. He does have a part in this whole thing, his wife is like us. I remember when I wouldn't post, sometimes its hard to write about this. At least he is compassionate toward women. I think things should go on a person to person basis not men in general. There are alot of Dr's out there that are total jerks, men and women, and like most of you I have been to tons of them that "blow me off" but I finally found a Dr and he is a man that believes me and is helping me. We need to stop being bitter to everyone that doesn't have vulvodynia. As far as Frank being here for his wife AND his daughters, I totally think that is a great thing to do. I wish that my parents or someone knew things to help prevent this horrible thing, like not using antibiotics countless times, or pads and tampons being bleached-who need those chemicals in such a sensative area, ect. I know that w/my daughter I am very protective of what I put on her, ecspecially when she was in diapers. I never put diaper rash creams on her b/c of all the fragrance and chemicals in them. Most parents are clueless to the problems that can cause. When she gets and ear infection I let it run its course-NO antibiotics. And guess what they go away on their own. These are the things I have learned from having this horrible thing. Knowledge is power and I have much more knowledge on health in general and how to prevent this problem from starting for my children, friends and family. Please stop being so hard on Frank, he is doing no harm to us. Don't read his posts if you don't like them.
CommentLook, I'm not trying to tick anyone off. I was just simply stating that I am so aggrivated with these men that some of us women have to deal with and it's rediculous. It makes us feel like we are not good enough for anything but to satisfy a man's penis. I DO NOT have a problem with men! Not all men are sex crazed jerks. sure intercourse is great, IF you can give and receive it. But it seems as though more women are understanding about conditions a man may than men are with conditions we may have. Go through and read stories through these guestbooks about women in fear of losing their significant others and tell me I'm wrong. Without women, men would not have been born and vise versa so I think men need to show us a little more respect than they do. I would LOVE to have a talk with a man who gets aggrivated with his wife because she is in pain and can't allow him the pleasure of her vagina. I mean, I can't reeive pleasure in any form most of the time. How do they think WE feel? WOMEN LOVE SEX TOO! We are not just on this earth to GIVE it and for procreation. I think any woman going through problems with their partner because of this should seek counseling. And if they can't respect your pain after that then there is no love from that person and you should not be with them. there WILL be someone out there to love them, pain or not. I know someone, who I won't name, who was in a very new relationship when her pain came on. She is STILL in that relationship now, years later. I can tell by what she tells me of him that he loves and supports her DESPITE the pain. I was married for many years before my pain hit and yeah it's frusterating and hard, on BOTH sexes. But that doesn't make us any less of women. I just get really upset when yet another woman is more concerned with what to do about her husbands feelings than her own. I understand that there are women out there that are just as disrespectful of their men, but we are the gentler sex and it seems to me that we are the more understanding sex. We are the nurturers so when there is somehting wrong with our husbands we instinctly move in to play nurse. Yes, I AM lucky to have someone who KNOWS that sex is not everything. And as long as he's pleasured in some form then he is happy. Sure I get frusterated, I'd LOVE to be able to feel love the way I used to in a physical sense, but I can't adn so be it. If he doesn't love me enough to respect me then he can move on and I can find someone who WILL love me for what I am on the inside and for my love and compassion and my fabulous butt! :o) Women that can have vaginal sex usually don't get very creative with their men because they don't have to. And when we DO get better, we will be the most experienced lovers! And hey, I am entitled to my opinion. I think all in all, most of us suffering from this condition are treated very disrespectfully. Like we can help being in pain. It's not a light switch! We can't turn it off and on! SORRY
CommentKimB-My post was not directed at Frank OR ALL MEN. It was in regards to men who see their wives and girlfriends suffering and in pain daily and yet get upset because they can't have sex. It IS rediculous. If a man wants ot post here thats perfectly fine with me. I never said otherwise. I am simply saying that I am so tired of hearing how we as woemn in pain are being treated by the men who are supposed to love us. I have a good man who supports all of my crazy ideas and will ask me if I tested myself on this or that and look at me and say well no wonder you feel more pain after eating this or that, you know to test yourself. So if your post was dirested at me then maybe you msiunderstood what I wrote in the first place. I'm not bitter towards men in any way. Just the ones who have no respect for the women they chose to be with just because they were unfortunate and now have a condition that they suffer from daily. It's insentitive and cruel. How many women have we seen just in the last 2 months, posting on here all upset because their men are upset that they can't have sex? I have frusterations too, but I'm not going to make my husband feel like crap if HE was the one that was sick and I couldn't get intercourse. And for anyone who is interrested, I just received my Low Ox Cookbook and there was a 4 page (front and back) packet from Dr. Solomons with info as well as a request form for a kit to order in order to participate in the Pain Project. It's a little steep, but may be worth it to anyone who might want to go that way. If you are interrested in a copy of the packet you can e-mail me at the above address and send me your address and I will be more than happy to mail it to you.
CommentSharon-You CAN have yeast at the clitoris. Yeast can spread through the entire vulva. Who suggested Crisco? Were you using it as a lubricant for intercourse or just for dryness?Replens is a product that is gentle. Just make sure to look at the ingredients as you may be sensitive to something in it. Also a product called Astro Glide. Crisco is for cooking. It could be a coinsidence that you started having problems at the same time as using it, but mabe not. Have you talked to a doctor? I had a burn a month ago and it was really bad and is still bothering me, but my swelling went away finally. things in our vulvar area take longer to heal since they stay moist. If you are just needing something for dryness, try some vitamin E suppositories. They are less harsh than just breaking apart a vitamin E cap and they won't clog the pores like the E oil in the oral capsules will. I know you are in agony. I have problems wiht pain in on and around my clitoris all the time. Thats where my pain originated. It is such a sensitive area with many nerve endings so it feels awful. I don't know what to tell you to do about the itching there. I wish I could help. But yeast CAN reach there. And we have the same last name! Just spelled differently! :o)
CommentCANDI-I was mainly referring to KARENS post not yours. Karen was rude to Frank, as other women in the past have been. It wasn't that long ago that someone else told him to stop posting here and he was perverted and got "off" by reading this. That wasn't the only time someone has said something to him. No I did not misunderstand your post, yours made sense, Karens didn't. I'm just sick of people and their occasional rudeness.
CommentTo All: Sorry to take up room here with this back and forth. I was not upset with anyones opinion towards how men are not understanding of a woman with vulvodynia. I simply wanted to give my thoughts on how strong the sex drive can be. We are jerks at times and inconsiderate. I've written here that I even considered taking medication to reduce my sex drive, it's a drag at times. Thank you for letting me voice my opinion too. Just as we can't understand your experience the same applies to you. Our society is sexist. Men who screw around are virile and women are called a lot of derogatory terms if they do the same. You are right that instead of thinking of themselves and their pain some women are more caught up in what their mates are going through. I don't trust my wife at times when she wants to have sex because I wonder is she really alright and not in pain or is she just doing this to please me! Trust me I have never given her cause to suffer in silence. I'll shut up now..
CommentThis is kind of a weird question, but does anyone notice a strong urine-like smell(w/discharge). It seems like the odor is stronger w/increasing pain for me. It's not actual urine b/c I can smell it even after a shower. Any thoughts would be appreciated.
CommentFrank- You said before that you "looked" and saw a tear on your wifes vulva. So there should never be a question of whether shes ok or if she is just trying to please you. I'm sure mine's wondered that before too, but through the doctor bills, medications and the painful biopsies I hope that took care of any questions. KimB-thanks. I know I can be opinionated at times, i just get so aggrivated hearing about men treating women negatively no matter what the situation is. But there are women out there that are just as bad. I know. My baby brother was married to one. And Frank, I am sure that there are women out there who fake pain for some reason or another. Attention mainly, but you yourself have seen her symptoms. I got into an argument with my husband not so long ago and I just didn't want to deal with it because I was having so much pain that day and he made a nasty comment about maybe I wasn't in pain at all etc. and me being a royal B sometimes told him just wha tI thought of that comment. Later on after we had cooled off he apologized over and over for saying that. If I didn't share EVERYTHING with him then he would have the right to wonder, but he's been there through it all and has seen the horrible symptoms I have and has seen the worst of my flare ups. I'm sure he didn;t WANT to but sometimes I just need an opinion and he saw me give birth so there's no embarrassment there.
CommentTo Candi: Since we are sharing so much I'll add this info to the mix. Yes I was the one who saw the small paper cut like tear, Not her gyn. Thing is do I say before we have sex I want to take a flashlight and get a good look. I still would not see raw or slighty inflammed areas, and that takes the intimacy out of it. I need her to feel confident enough to be honest and I do my best to convey that to her. She was raised like many women to suffer in silence along with all the other bull----. I used to go to church but after the " Obey Your Husband" sermon I told my wife I can't take it anymore. I don't want to insult anyones religion I just feel it's time to say enough and demand more respect. Lastly I have suffered with abdominal pain since before we were married and my wife knew I had this problem. She has been with me after surgeries and seen me through emergency room visits while I was doubled over in pain. Even though she knows I'm not a faker or liar there are times when she has heard enough about my tummy hurting. Same thing with guys on the job" Yea, Yea we know your stomach hurts". Even though your pain is real and your loved ones care they all have their moments of capacity when they just don't want to hear it anymore. Yes it is cruel and hurtful but it is human nature. I don't like it and when it is done to me I too spaek up and make my case. All I can say is please do not suffer in silence. Talk to your loved ones and let them know when you are hurting also let it be a reminder that others have legitimate pains and limitations. Thanks.
CommentI'm definately not one to suffer in silence. I don't do anything silently. That's the Sagittarius in me I guess. I was told by the specialists office that I saw in April to get my "positive" diagnosis, that he no longer sees patients with vulvar problems. I called there everyday for over a month telling those women I wanted to see him. finally he called me personally at home and offered a consult with my Dr. over the phone, I agreed and then asked my Dr. to talk him into seeing me anyways. I was seen! I get what I want when it's important and THIS is important. Don't EVER take the refusal of a few receptionists at the office of a doctor you want to see as the last word. By telling other women I have met along the way about my condition, I have learned of other women suffering as well. Seems as though someone I talk to always knows of someone else who had vulvodynia/v.v.s. And here I thought it was rare. Or that's what I read when I was first diagnosed with the possibity that I had this. It's not rare at all, just not everyone has a big mouth like I do. It's so sad that women still giggle at the word vagina. Or refer to it in some silly word. SHANNON-I am e-mailing you some recipes. Vegan ones first of course. And of course the desserts. But since you are trying the candida diet too just be cautious. I'm not farmiliar with all foods to avoid on that one. And theres NO chocolate cake!I am not sure what to think about my pain these days. I wake up in the morning with minimal redness and burning and then by 11am I am burning and so red, and that's before I even eat anything. I feel like screaming!
CommentI have tried steriod creams, steroid injections, anti-depressants, and physical therapy for last 2 years. I found the most relief with physical therapy but the vv is still there. Now i'm taking lidocaine and desipramine, but don't know if this will work. This is a really awful condition, and I think it's truly amazing that there appears to be no treatment that works. All of these experimental treatments have proven expensive, time consuming, and done nothing for me. Sometimes I wonder if it would be just easier to live with it and forget about the treatment. Half the time drs don't even know how to diagnose this, and haven't the hottest clue about treatment or realistic success rates. Unbelievable.
Commentcan someone please help me, no one answers my questions, maybe no one knows the answer, but if u please do, please answer cause im desperate....i get bacterial infections atleast once a month..which means i take antibiotics once a month which isnt good for my body...does anyone know how i can keep these bacterial infections away?..once the bacterial infection goes away,another one comes back...i dont have sex, i use cotton underwear and all that, im just tired of going to the doctor once a month and having to take antibiotics....i heard vitamin b complex is suppose to help but i have been taking it and it doesnt help at all... Please help!
CommentT.P.- If you are getting baacterial infetions then why are you being given anti-biotics and not anti-bacterials? What is the medication you are being given? Also anti-biotics strip us of the good bacterias in our bodies. Having been taking so many anti-biotics, you need to go to the health food store and get on a good Pro-biotic, one with acidophillus and bifidum, You want one that is kept in the fridge. Also try taing Olive Leaf, you can get that at your health food store as well. Here is a link about Olive Leafhttp://www.life-flo.com/oliveleafplus.htmlJust remember, natural products take longer to take effect, but you aren't seeing results from what you have been taking, so it won't hurt to try.I had a recurrent bacterial infection for 8 months, just before getting vestibulitis. I was taking Flagyl three times a day. I think that anti-biotics an danti-bacterials can definately be a cause of vulvodynia. Dr. Solomons from The VPF is now researching that possibility according to info I received yesterday. You need to replenish the good bacteria needed for your system. I don't think that yogurt is very strong in that way. Also you may want to try some grapefruit seed extracthttp://www.nutriteam.com/gse.htmLike I said, it takes some time to see resultsI take all three of those things on a daily basis. also on the Olive Leaf, you will start to have more energy.
CommentT.P.- One more thing. You may want to tell your partner to get checked for bacteria if you are presently with someone. It is NOT an STD, but CAN be transferred back and forth. I know that some believe that bacterial infections and candida cant be given to your partner, but they CAN. Men just don't show outward signs like we do. If you are involved with someone and you continue to get this infection then he should be treated as well, just in case. Also, my mom told me that she read in a magazine that if you have a bacterial infection, it doesn't always get washed out of your panties and so you could be reinfecting yourself that way as well. I went and bought all new panties and just wore an all cotton panty liner and slept with no panties at night. this was back when I COULD still wear pants. The good ol days.
CommentCANDI--Antibiotics ARE given when you have a bacterial infection. Like Flagy, Cipro, ect.
CommentI didn't say antibiotics WEREN'T given. I asked WHAT specifically she was given since she didn't say. Some are targeted at bacterias specifically some at fungus and some at viral infections. Whatever she's being given isn't working obviously.
CommentHello again,I was told by Candi that yeast could be the cause for my itching around the clitoris. Thanks Candi. I know some of you in the past have suggested a yeast free, sugar free, low carb diet with acidophilus. Could someone who has tried this tell me what to do and whether it was successful? I really want to avoid prescriptions if I can do this naturally. Anything that has helped would be appreciated. Is there anything I should use topically to help with yeast or with itching? (I have tried vitamin E oil and veggie oils and this only cause more irritation and bumps--not good). Thank you, Sharon
Commentcandi thank u very much for answering me, i will try all the things that you suggested. the antibiotics im on right now is called metronidazole , i take two pills per day for one week....whats the diffrent in antibiotics and antibactrials?
CommentT.P.-Metronidazole is FLAGYL. Unfortunately many of us had are problem start w/this antibiotic. My problems started after a bacterial infection that kept coming back and every time it did I was taking Flagyl for it. After a while the pain stayed constant(same symptoms as w/infection) and nothing would show up w/tests and here I am today six years later. If I would have known back then what I know now I would never take Flagyl again. It's not that the antibiotic is the wrong one, the reason its not keeping your infections away is b/c the bacteria is becoming resistant and at the same time wiping out all the good bacteria that keeps those at bay, like Candi said. I have a friend who got a bacterial infection she didn't take antibiotics and it cleared up w/in a week or so(like w/medicine) along w/increased probiotics. If I were you I would definately stop the antibiotics. Also you are setting yourself up for yeast sensativities or even systemic yeast which I now have(and am treating). Have you ever heard of Cyclic vulvodynia? That is a yeast problem, it doesn't usually culture. I don't know how long you've had your problem but I would definately change your treatment. CANDI-I was referring to this line that your wrote "If you are getting baacterial infetions then why are you being given anti-biotics and not anti-bacterials?" That didn't make sense to me. I thought that antibiotics were generally referring to medicines that treat bacterial infections. I never heard of someone calling them anti-bacterials, I've only seen that on soaps and mild things like that. I know that antifungals technically refer to the medicine as an antibiotic but generally they are referred to as antifungals. I just didn't really understand that specific question.
CommentSharon, I never used criso but i used vagisil and had the same reaction as u. i freaked and went to the doctor cause some of the bumps got big and hurt. she just told me that my pores got clogged. my clitorus eventually became very sore too. Since i've been doing the mud(see my previous post) and yeast free diet i still have redness on the vulva but the pain has diminished a lot.good luck to you.
CommentTP- Did your doctor do a culture for your bacterial infection? I had an infection and it took the 3rd doctor before it was diagnosed properly. By then all the wrong treatments caused me to spiral into the vulvodynia in combination with estrogen loss.Sharon- Try Replens for moisture problems. You can buy it in a tube that you can control the dose. So sometimes I use more if I need it. This way you can also use it on the outside. I have only found the tubes at RiteAid. All the other stores sell it in the individual applicators.
CommentT.P.-metronidazole is the generic of Flagyl, or should I say the chemical name. You just pay more if you get it by the "brand" name.Thats exactly what I took as well. 2 times a day for so long and then they decided to up me to 3 times a day and in a week I was fine and then a week and a half later, I got vestibulitis. That was almost a year ago. But even Flagy, even tho I was told it wouldn't cause a yeast infection, takes away good bacteria. That bacteria needs to be replenished. I think everyone should take a good probiotic. Even men get candida, it just shows itself in other forms since they dont have vaginas. They get sinusitis, diarrhea, skin disorders and many other things. If you want to continue on the Flagyl, which I won't say not to to anyone, I'm not your doctor, you can see if they will increase your per day doseage like they did mine. Just STILL get a good probiotic from your health food store to keep your good bacterias in check and also try some of that Olive Leaf. I will take both of those things until the day I die! Please keep us all posted as to how you are doing, just remember, things take time nd patience. Something I was just reminded of today by a special friend. My sweetie, Shannon.
CommentMiri-Did you get the dead sea mud at a health food store? I've never heard of it. I had a chemical burn from using Gynelotrimin, estrogen cream and then swimming in chlorinated water al in a month and a half period of time. I am still having bad effects from all of that. I am wondering if the dead sea mud would help. I just don't want to put anything harsh on my vulva and am pretty scared to stick anything natural there either. Had anyone peeled from a chemical burn? And if so, how long did it take to stop? Its FREAKING ME OUT!!! I used so many things in a years time and never had that happen.
CommentCandi,I would be hesitant to try something new if I were you too. maybe the tissue just needs a rest. But when and if you are ready to try another potential aid, I got the mud in israel but you can order it at www.ahava.com i believe. As I said, at first it was totally painful but after a week I hardly felt a thing. Email me if you want more details.
CommentMy specialist has today diagnosed me with vulvodynia following 7 months of weird symptoms (weird in the sense that I've never experienced them before and not that many people seem to be able to relate to them!) so it was very comforting to read the messages in this book. I have a couple of things in common with others. I had a bad bout of thrush (candida/yeast infection) last year, followed by a cyst on my ovary which burst, a tear in my hip flexor which required physiotherapy for some months, I then had a miscarriage at 3 months with a D & C. Since the D & C I've had a strep infection and what my gp thought was a UTI however all recent swabs/urine tests are completely clear. My specialist has suggested I try accupuncture/yoga/exercise. Basically stress management. Has anyone tried any of these and had relief? He hasn't mentioned low oxalate diet or other things I've seen on related websites. I am a Christian and would appreciate your prayers. Marianne
CommentMarianne-I felt the same way you do about not many people beig able to relate to what you feel. And then I started reading and researching and talking to everyone I come across. More people than you could imagine suffer each and everyday with this. It's just been instilled in us when we wee little that we don't talk openly about our vulvas except with our doctor. Not to mention, so many women don't know what they have and so they are scared to even say anything at all. I went to a specialist in Gainesvile Florida in april, when I was "positively" diagnosed with vestibulitis, and he alone has over 400 patients with vulvodynia/vestibulitis. Thats one doctor, one "specialist". So now imagine all of the other specialists and how many patients they have with this and how many OBGYN's who have patients with this in every state and all over the world. I've looked at many other sites online and this is the only one I came across that has alot of info and women write daily. There are more which have a lot of info but the guestbooks are confusing. Feel free to e-mail me anytime. It makes it easier to have someone to talk to one on one for support and just a friend to cry to when you get down, who understands your physical and emotional pain. My e-mail address is above. I talk to 5 women on daily basis. And I have one pen pal. She doesn't have internet access and has noone but herself. She is completely alone and in really bad shape. If anyone is interrested in becoming a pen pal/phone pal let me know and I will give her address to you.
CommentIm so glad i found this page. Im 22yr & 5mths ago i was diagnosed with vulval vestibulitius. Ihave suffered with this for 4 years. I always thought i had thrush & even the doctors kept giving me thrush creams. i now know it was never thrush. Im so upset & down that this has happened to me. i wish there was something that would make this go away but the hospital has already warned me it may never go away. I cant even have sex anymore with my very understanding boyfriend as i just cant take the pain & after pain. I constantly have very bad pain like its so very sore all day long. I been unable 2 lubricate myself which i think makes me even more sore. I sit down alday at work which doesnt help. I cry so much because im so down that i may never have a normal sex life - im so young to have this. The hospital have put me on steriod creams & amitripterline (sorry cant remember spelling) im now on 3 tablets a night which i have seen no improvements at all. Ive stopped bathes & now shower using no soap. Im so devestated. Pls someone tell me if theres any products that will make this better.I really need some VV friends who suffer with this condition. I need people who understand & also suffer with this - pls email me- jaynepengelly@hotmail.com
Commentcandi- im guna try the oil leaf plus and the pro-biotic, thank u.... would using the grapefruit extract make the vestibulitis worse? i dont have sex with any guys so i know im not passing it back and fourth...but i wash my underwear in hot water, my gyno also told me that girls put them in the microwave to get rid of the bacteria.To P: yes my doctor gave me a culture and i had one, i have one every month,,,it goes away with the antibiotics but then after a week or so i get it back again....im guna try the pro biotics and see if it works, thanks for all ur help guys
CommentFor Linda: Burning Mouth Syndrome I think is also called glossodynia. From what I have learned with my candida albicans its a pretty sure sign you may have it. I, too, have fibromyalgia, and v.v. I was finally dx'd with candida albicans due to my persistance. Essentially everything that has gotten me a little better (not cured by any stretch of the imagination) I have done on my own or demanded. These dr's love to come up with their own theories, and usually they do not work. They hate to hear our beliefs, yet we live this and are very much in tune with our own bodies and genitalia. Demand they listen or find a new doc! I also wanted to say for Candi that I took flagyl, 2 7 day doses in a months time. I felt great for 2 weeks, then, bam, vulvodynia! Probably caused yeast. The best thing seems to be if we have to take any type of antibiotic, ask for an antifungal along with it, its too late for me, but it may prevent the suffering I have had for 12 years. Also, they found that the antibiotics destroyed my intestinal lining which caused proctitis and colitis, and fibromyalgia and fatigue. I never made the connection, because the vulvodynia was always the worst symptom. I knew it extended to my anus and rectum but I thought it was all the nerves down there from the v.v setting that off. But its actually the colitis and proctitis that initiate the vulvar pain. You may want to check into that. The candida diet for the proctitis isnt that dissimilar to the low ox diet, so maybe if you have an intestinal disorder, the low ox diet helps both. They said I had IBS, when it was actually proctitis. Basically, smaller meals cause less pain, so try that. Best wishes to all! laurel
CommentLaurel-When they gave me the Flagyl, the last time I took it, 3 times a day, I questioned whether or not it would give me a yeast infection and asked for an antifungal, I was told it wouldn't cause a yeast infection and not to worry about it. I didn't think it sounded right but I was the good little patient and listened and believed every word. One of the 2 present doctors I am seeing, well, havent seen since February, asked if I had been on the Flagyl right before I got v.v. and I said yes, but that was the end of the conversation. He wanted to do a fungal culture and a week later I called and they said it grew nothing. I know better now about the whole vaginal yeast thing. I have to go for my pap in October and I dread even walking into the office. Not only will it hurt like heck, but I wonder what they will try to get me to use next. I'll pass on anyhting they suggest of course. I seem to be allergic to EVERYTHING.
Commentcandi: you are not alone! I am literally allergic to evrything, cant even use my gas oven. I have such heart irregularities and anaphylaxis that I never had before. I also notice yeasty foods like breads can cause my heart to pound. I went to an allergist who thought it was my digestion. Highly doubtful. i think these antibiotics destroyed my central nervous system or caused something to go haywire. I hate the feeling of complete agitation. Anyway, I believe I have a gluten problen too, probably celiac disease but thats the least of my problems right now. These docs are wrong. I just went for my proctitis b/x I went for 6 weeks in a flare up and was ready to kill someone (a manner of speaking of course). I mean I have had flares but this was so bad. Usually I am constipated but I had such diarrhea, I literally was raw inside. I was scheduled for a colonoscopy wheich I want so badly to rule out crohn's disease, but they said I had to have demerol and something else. Naturally I chickened out due to my heart and chemical sensitivity. I did speak to them again last week, and they said its cramping but I can opt for no meds. I think I will do that. But when I did go to see my gastroenterologist, I said I thought this was all due to taking too many antibiotics over the years and he said what did you take that you think pushed you over the edge. I said flagyl, and he just smiled and nodded his head, and said, yup, "that'll do it!" I absolutley would never take another unless I had to but if I was in dire need, Id get the strong dose of antifungal. No one ever found yeast with me either until I found my fibromyalgia dr in Chicago. They do a stool test for it, and if candida does not show up, it will tell you if its an atypical yeast, and what drugs you would be best suited to take. I take nystatin powder by paddock. I worked up to 1/2 tsp 3x/day (may cause diarrhea). its sugar free, and I have no side effects because unlike diflucan its swallowed in water so it is not absorbed into the bloodstream. Great Smokies Labs does the test, and if you cant get your dr to agree, they can get you the kit direct, but the test is probably 300.00. But its a good investment if you believe its your problem. I hope this helps you. Thanks for you story. I pray for us all! laurel
CommentLaurel-I thought you couldn't take Nystatin b/c you were resistant? How are you doing w/the vulvodynia part of your problems?
CommentDoes anyone know how to get rid of internal vaginal inflammation.....whenever i go to the gyno she says i always have it and i always have alot of white blood cells
Commentthis is a dumb question but does anyone think that doctors would prescribe pain killers for painful sex?
CommentThis is quite a long guestbook and I admit that I'm pretty overwhelmed with all of this information! I think I may have vulvodynia, since many of my symptoms are the same or similar, but I am not sure. I've been to 3 different doctors , 8 different visits , in the past 10 months. I'm at my wit's end at this point, trying to figure out what is wrong with me. I have been tested for all and any STD's which I thought it might be originally, but I have a tendancy towards constant yeast infections and a swollen vulva. I am also inflamed many times internally, on the left side of my vaginal wall. This makes intercourse sometimes painful - other times i am fine.... but it's making my sex life with my fiance change, and I am constantly frustrated - to tears! The doctors have told me that it is nothing - that nothing is wrong, and it is normal to have discharge, blah blah. But I just feel that it's something more. My question is if this condition can come up later in life? This came on to me about 2&3/4 years ago - and I had never experienced it prior to this. I'm also quite confused with all of the talk on the guestbook about dead sea mud and mineral deficiency, diet, surgery , steroids, etc...If possible, could a vv vet email me and give me some advice on the next steps I should take to help me get out of this hell?Thanks so much! :)J.
CommentI haven't visited this site for a while and am amazed at all of the new posts from new women that are suffering. It pains me that women are waking up every single day around the world with these bizarre symptoms (that most of us know only too well) and wondering what on earth is wrong with them. Even though I should know better, I am still AMAZED that doctors are still telling women there is nothing wrong with them. I think one of the reasons this is happening is because (as the beautiful Candi said) we are raised not to mention our vulvas or vaginas and to minimalise our own pain. And that, our private parts are dirty, disgusting and/or unclean. Well women, bring your vaginas out of the closet!! Fight for your health and your right to good health and a normal sex life. I urge all those that haven't already, to sign the Women in Pain petition that pledges to "stop the bias which prevents the ethical and equal treatment of women with chronic pain diseases?now". Please make your voice heard.http://www.petitiononline.com/winpain/
CommentI have had pretty severe symptoms of vulvodynia, without the tearing problem. I do not have interstitial cystitus, but found this web site, which explains a lot about pelvic floor pain. I joined NVA, and found Dr. Weiss (San Francisco) through them. I have seen him 4 times now, and ABSOLUTELY believe he has the answer to my pain. Maybe this can help others. To read more, go to http://www.ic-network.com/guestlectures/weiss.html
CommentJackie, are you menopausal or pre-menopausal? Vaginal and vulvar irritation can be the result of declining estrogen levels -- the skin atrophies. Maybe look into that before you conclude you have vulvodynia. (Read "Screaming To be Heard.")
CommentI have a few questions that I hope some of you will answer. I have vestibulitis and vulvodynia. All in all, my entire vulva is inflammed. I have no problems inside of the vagina, thank goodness. I have been checked for STD's and have had vaginal cultures for yeast that are negative. I know that's not the only way to check for yeast and that you can have it even though the culture shows nothing. I have never had my hormones checked, becasue I am told I am too young. Almost 30. I was on oral birth control for a long time and had been on antibiotics for long term too for an infection. I took a break from the birth control and stopped the antibiotics and I thought I had yeast, but so far everything I have been on is not working. Can anyone tel me please what tests I should request to be run?I read that hormones are hard to test because each woman is different and is there a way to tell if there is yeast even though a vaginal culture shows there isnt anything. And are there other things to check? I did all STD's including the new herpes test that is really expensive and 97% accurate. I am not worried about STD's though but figured I may as well rule it out. Who knows right?I don't use soap, I don't use detergent and I use Aveen soap on my body and I wash my hair so that shampoo doesn't touch my vulvar area. I can't wear panties cause th epain is so bad. The rest of my clothes I wash in arm and hammer. I had a biopsy and have used so mny creams and things that don't work. And most of them burn me. I just need to know what I should check for please if someone can tell me I would appreciate it. Thank you
CommentFor KimB: Actually I was resistant slightly to the nystatin powder, so Dr McNett prescribed Diflucan. It was a high dose daily and then after two weeks of making me so drowsy, I started to feel agitated and heart pounding. So, I emailed him to say I didnt want to take it anymore. I just have a really hard time with meds anyway with my chemical sensitivities. I asked him if I could continue with the nystatin that I he had precribed whilst awaiting my results from Great Smokies Labs, and he said that since my resistance was low, to try it and see, and it seems to be ok. And when I did the stool test, I guess you were supposed to be off any antifungals for a period of 5 days and I was only off about 3, so maybe that affected the result. BTW, how are you doing? laurel
CommentI'm trying to help my wife. 47 yrs old, with vulvodynia (6 years) and pain extending to the glutes and down the leg all on one side. We've done the Dr Elizabeth Stewart, Kellog Spadt and Dr Fred Howard thing to no avail along with, of course two dozen other Docs and Alternate Docs. We have two probable diagnoses. Deep seated candida and/or nerve damage (fall on the coccyx and tear in L5-S1).All else ruled out.Question. Has anyone been on the Pudendal Nerve Entrapment rout?Question. Anyone been on Marjorie Crandall's 10 steps?Question. Is there a recommended Physio/ART VV specialist in the North East US close to the Canadian border. We live in Nova Scotia.Two things that seemed to work for a while to kill the pain;1. Two hours daily oxygen and Trisalts.2. One low dose of Neutrocyclin (spelling?) from Dr Stewart (bad side effect stopped that cure)God Bless you ladies, every doctor should experience his wife going through this torture.
CommentI'm trying to help my wife. 47 yrs old, with vulvodynia (6 years) and pain extending to the glutes and down the leg all on one side. We've done the Dr Elizabeth Stewart, Kellog Spadt and Dr Fred Howard thing to no avail along with, of course two dozen other Docs and Alternate Docs. We have two probable diagnoses. Deep seated candida and/or nerve damage (fall on the coccyx and tear in L5-S1).All else ruled out.Question. Has anyone been on the Pudendal Nerve Entrapment rout?Question. Anyone been on Marjorie Crandall's 10 steps?Question. Is there a recommended Physio/ART VV specialist in the North East US close to the Canadian border. We live in Nova Scotia.Two things that seemed to work for a while to kill the pain;1. Two hours daily oxygen and Trisalts.2. One low dose of Neutrocyclin (spelling?) from Dr Stewart (bad side effect stopped that cure)God Bless you ladies, every doctor should experience his wife going through this torture.
CommentI'm trying to help my wife. 47 yrs old, with vulvodynia (6 years) and pain extending to the glutes and down the leg all on one side. We've done the Dr Elizabeth Stewart, Kellog Spadt and Dr Fred Howard thing to no avail along with, of course two dozen other Docs and Alternate Docs. We have two probable diagnoses. Deep seated candida and/or nerve damage (fall on the coccyx and tear in L5-S1).All else ruled out.Question. Has anyone been on the Pudendal Nerve Entrapment rout?Question. Anyone been on Marjorie Crandall's 10 steps?Question. Is there a recommended Physio/ART VV specialist in the North East US close to the Canadian border. We live in Nova Scotia.Two things that seemed to work for a while to kill the pain;1. Two hours daily oxygen and Trisalts.2. One low dose of Neutrocyclin (spelling?) from Dr Stewart (bad side effect stopped that cure)God Bless you ladies, every doctor should experience his wife going through this torture.
CommentLaurel--I am doing better, thank you. My feel better overall. I have more energy, feel more rested, my skin is clearing alot, and I have color back in my cheeks. The vaginal pain is better but not enough to have intercourse-yet. I did have some die-off(vaginally) a couple of weeks after I started the meds, I had horrible itching, etc & no discharge. I do get extreme fatigue sometimes but it only last a couple days which I'm am relating to die-off also(hopefully). I'm just wondering how long it may take to feel better. Do you think it could take 6 months or longer to be able to heal/have intercourse? I just don't know how long I should do this until I need to possibly try something else. I still think its the majority of my problem. How are you doing? Do you feel better overall? What about having intercourse, is that still working for you? Thank you again for bringing me closer to my cure, I never would have known to try Dr McNett if it weren't for you!
Commenti've had this condition for years and have tried MANY different treatments, mainstream and alternative. my most recent relevation was that i was going to try to cleanse my body, making myself more alkaline as opposed to having an acid state. so after about 3 weeks of various supplements, consisting of lymph support, candida clear, inner clear and 3 colloidal type drops - MSM with Vit. C, colloidal silver, and 1 other which I can't think of at the moment, i started to feel like i had a vaginal infection. now over the years i go between soreness/pain - 85% left sided and burning, which i feel like i'm infected. so i'm wondering did i somehow create a vaginal infection taking these supplements. oh how the mind gets to confused after years of this. anyway, i went to the dr. - sos you have bacteria - do you want the cleocin cream, i've used that countless times to no avail, no i don't want it. went to my gyn - just a regular gyn - tested me, no yeast, no bacteria - back to square 1. now my vaginal cultures for yeast are always negative, yet thru great smokies, etc... i've had yeast in my stool. given all your expertise, could i have been experiencing die-off when i began to feel infected? i swear i can't think straight sometimes. also, the longer i have this condition the easier i give up on "treatments". then i get mad at myself for maybe sabotaging myself, but i hurt so bad and i'm trying all this stuff by myself - trying to cure myself - but when i start burning i begin to freak out. the pain i can deal with, not the infection feeling. 1 other point, my pcp prescribed famvir - for virus and shingles - i do not have hpv or any std's. it hasn't helped, after 3 weeks i stopped that too. i don't think my supplements could cause a vaginal infection, yet i started to burn and feel infected. i'm tempted to try again. your comments are welcomed.
CommentHas anyone ever examined their own discharge? I don't want to sound gross, but I am talking about actually inserting your finger in and scraping the side of your vagina and then smudging it on a piece a paper or something. I have and every time a get some clumps of what looks like dead skin or pieces of white things mixed in with the mucus. Can anyone relate to this? I am wondering if I am actually seeing yeast cells because I thought the mucus should be smooth. I know that a yeast infection causes a cottage cheese-like discharge, but this ins't that thick. It is mostly smooth with these little things in it. Does anyone know about this?
CommentKimB - I too am taking diflucan. I just started it this week. I have 100 mg tablets. I take a half every other day for 1 wk, one half every day for one week, then a whole one every day for who knows how long. I feel like it is making me worse. Is this how you felt at first? I am just nervous that I'm allergic to it or something. I just don't know if it is die-off or I'm allergic. I want to keep taking it, but I'm scared! Please let me know if you felt the same when you started it. Thanks, Crystal.
Commenti always examine my discharge too, i noticed that since i had vestibulitis that when i urinate my discharge looks really clumpy in the toilet bowl which sounds gross sorry, it looks like tissue is coming out of me
Commenti always get bacterial infections when my bf ejaculates inside of me, he got tested for a bacterial infection and he doesnt have it, its just that my body doesnt agree with it...my gyno told me to use metro gel after sex,....but i dont have medical coverage and it gets expensive...does anyone think douching after sex would help keep away a bacterial?
CommentTo T.P.: It has been proven that the ejaculation of semen can alter the acidic balance of the vagina and make it vunerable to infections. Try having your boy friend use condons for awhile just to let you get your healthy balance back. Douching might further upset that delicate balance. You might also try some supplements to enhance the acidic condition, Grapefruit extract, acidophilous etc.
CommentAbout the discharge with white lumps? I had something like this after having a diagnosed atypical yeast infection (glabrata). The discharge continued even though wet preps showed few signs of yeast and cultures showed no growth. I finally treated myself with boric acid suppositories 2x daily for two weeks, then went on a no-carb diet for a month after ?-- and the stuff went away. I also started using estradiol cream at that time, too, though, so who knows what helps? (There?s a condition called cytolis, I believe, where the white blood cells break up as they shed? I was also diagnosed with this at the time.)About hormone testing -- most doctors argue that you can't test because normal hormones can vary so widely, but read Screaming to be Heard" for another opinion about this.
CommentWhen I used to regularly visit this and other vulvodynia sites several years ago, I remember people commenting on how skewed the comments were, because they only included failures. I'm just dropping back in to let people know that I am an almost entirly recovered example of what was considered a "fairly severe" case. I spent several years visiting many doctors, including specialists at 2 teaching hospitals. I couldn't sit for more than an hour or two before symptoms began to appear, and I was in significant pain at the end of the working day--if I made it 8 hours. Researching vulvodynia was my whole life.It wasn't until at least 2 or 3 years had gone on like, that other symptoms appeared, such as "burning tongue" and something I thought was trench foot (of all things). On the exact same day, both I and a relative of mine (a physician) stumbled on what appears to have been the answer--B vitamin and/or zinc deficiency. Within days of taking high potency B vitamin supplements my non-vulvodynia symptoms had completely cleared. These other symptoms had been around about 3 months. Within a few months, my vulvodynia symptoms were clearly improved. Within a year, they were almost gone. Today (5 years later) I work eight or nine hour days and only occasionally even notice discomfort. And I have almost always been neglecting my vitamins when I do. I'm a firm believer in controlled studies and the science over anecdotes, and only wish I'd had a doctor test my vitamin levels before plunging in. I realize that would make a more convincing case. Yep, I put myself before science?but I was desperate. And really, I had so many symptoms of vitamin deficiency by then. It?s hard to blame the doctors, since most symptoms appeared at the end. I had told them I was a vegetarian, though, and I think they should possibly have looked into that further.As for convincing myself that this was the cause, however, I've now gotten lax on my vitamins so many times in the last few years, and it correlates so closely to recurrences, that I am 95% convinced that this was the cure. I am about as skeptical a person as you'll find. I recognize the problems with anecdotal cases and I take a good deal of convincing. I've no idea how many other people have the same problem. And I'm a vegetarian, which increases the odds of deficiency in these vitamins. But I urge anyone who has the sitting/burning type vulvodynia to consider this--especially if you have any burning tongue or other skin symptoms. And especially if you are vegetarian. I did take vitamins before this, by the way. Just in low doses and irregularly. Maybe vitamins are taken more seriously now in treating vulvodynia--but they weren't when I had my problems.
CommentBonnie,I haven't logged on lately, and when I did today and read your message that you posted about a week ago I couldn't believe it! Everything you said is exactly how I feel!! I have been taking Olive Leaf Extract and Grapefruit Seed Extract now for about 3 weeks. I am also on a 100% low oxalate and low yeast free diet. I like you think that I must be going through some type of die-off effect because I feel worse now that I did before I started!! The burning and itching in my vluva area is so bad, I am about to loose my mind!! My knee joints are killing me, and overall I feel like crap!! I have done a lot of research the last few days and everything I am reading is indicating that especially Olive Leaf Extract can cause major die-off effect symtoms. In fact so bad, that some people have to stop taking it and give their body a rest before they go back on it? I figure that I have been suffering with vv for almost 7 yrs, that I can take it and am going to stick with it and see what happens? Your right about being confussed, not knowing what to do next, tyring to heal yourself, reaching a point of no return!! There is so much info lately on this web site with all the different things that we are all tyring to do to cure ourselves, that it starts to get overwhelming!! I have been talking to Wendy on a regular basis, and she has been very supportive and encouraging!! I am thinking of going to see her as I don't live very far away from her ( a short plane flight). I am so beyond what my mental state can handle, I am on the edge here, and keep telling myself that it's all mind over body! I am convinced that my recent bad attack of vv has been brought on by my recent ovarian cyst surgery which left me being pummped with morphine, antibiotics and got knows what else!! On another note, has anyone heard of using "ozonized oil" as a cure for VV? With all the research I've been doing lately, I came across this web-site that talks about it? Interesting enough, it also claims that yeast and other hiddin bacteria that aren't always detected my tests are the cause of all this, and that the ozonized oil has special properties that kills anything without any harsh side effects. You use it topically, and can also put some drops in water and douche with it? Everyone hang in there and God Bless!
CommentTo the anonymous person that posted the positive results they had with B Vitamin - thanks. I did some quick research on b vitamin deficiency on the net and I found an email from a person that said if they sat too long in one spot...like watching TV on a chair...they started to stiffen up and their neck and back started to burn. This would happen all the time and they were also a little more sensitive to pressures. Example, they would wear a shoe and their feet (both) were more apt to be numb. And someone replied that it sounded like B vitamin deficiencies - esp niacinamide. And someone else replied that it sounded like the symptoms they had with fibromyalgia. Ring any bells ladies? Best wishes, Shannon
CommentFurther symptoms of vitamin b defifiency are: depression, mood swings, anxiety, noise sensitivity, fatigue, digestive problems, constipation or diarrhea, decreased or increased appetite, CRAVING FOR SWEETS, neuralgia to neuritis, pain, tingling or achiness, cold hands and feet, heightened sensitivity to touch and/or pain, menstrual complaints, soreness of the mouth, dermatitis, acne, headaches, insomnia. Hmmmmm.....
CommentHi again all,How is everyone? I m going to have patch testing done, i have to go to the hospital three times apparently. I have felt a couple of bumps down there :O! That is kinda scary. My itch is still unbearable, however my doc says it isn't vulvodynia... its excema and i have it rectally now too. Any words of wisdom? I ve been suffering with this for nearly two years :( thank s God Bless Has Patch testing ruled out anything for anyone? Thanks for answering
CommentAny suggestions for brand of vitamin B capsules/tablesand dosages to take. I have some of those symptoms that you mentioned and I was tested (routine blood work) that turned up that I was low in vitamin B12, but haven't yet taken any supplements.If someone has suggestions on brand/dosage, i wouldappreciate knowing what you are taking.Thanks.
CommentTo Marie: I suggest Twinlab B-50 Caps. This is a very good quality, high potency, multi B capsule. Take vitamins with a decent size meal and drink plenty of water through out the day. A good source of information on vitamins and minerals is the Vitamin Bible by Earl Mindell. Expect to see your urine turn a bright greenish yellow, excess B vitamins are excreted through your urine. Good luck.
CommentHi,I was a vestiblitis sufferer from 1995-1999. I too started with yeast, bladder and bacterial infections. I too had been on numberous creams, antibiotics and other treatments; such as, interferon injections, and finally 2 surgeries to remove the irritated skin. The first surgery did not work (I was told the first dr. did it incorrectly), but the second surgery did. With other follow-up treatments, I was able to kick this horrible disease. I was doing great until about 3 weeks ago, and after I got my period, I started feeling like I was having razor burn between my legs. It then turned into what I thought was a yeast infection. It got worse as the days went on, and I felt my vestiblitis coming back on! I know the pain all too well. I was and am devistated. I went to my dr. who told me I did have a yeast infection. She put me on 2 doses of diflucan. It seems to help, and I thought I was rid of this again, but then I started to feel another yeast infection coming on. I then returned to my dr. who prescribed me 3 more diflucan. This has not helped me. I did have a culture taken of my vaginal area, and what I did come up with is that I do not have yeast, but rather a high white cell count. My dr. told me that because I am very sensitive to yeast that my immune system was up-regulated to an inordinate degree causing the high white cell count. He told me to start using an ointment called Topicort to reduce the swelling. I am very skeptical of using this because I have in the past, with no luck. My question to you all is has anyone experienced a period of "remission" as I have and then have your symptoms return? If so, does anyone have any suggestions as to what I can do to stop this irritation before I go down the long road that I suffered previously. /Thanks
CommentHi,I was a vestiblitis sufferer from 1995-1999. I too started with yeast, bladder and bacterial infections. I too had been on numberous creams, antibiotics and other treatments; such as, interferon injections, and finally 2 surgeries to remove the irritated skin. The first surgery did not work (I was told the first dr. did it incorrectly), but the second surgery did. With other follow-up treatments, I was able to kick this horrible disease. I was doing great until about 3 weeks ago, and after I got my period, I started feeling like I was having razor burn between my legs. It then turned into what I thought was a yeast infection. It got worse as the days went on, and I felt my vestiblitis coming back on! I know the pain all too well. I was and am devistated. I went to my dr. who told me I did have a yeast infection. She put me on 2 doses of diflucan. It seems to help, and I thought I was rid of this again, but then I started to feel another yeast infection coming on. I then returned to my dr. who prescribed me 3 more diflucan. This has not helped me. I did have a culture taken of my vaginal area, and what I did come up with is that I do not have yeast, but rather a high white cell count. My dr. told me that because I am very sensitive to yeast that my immune system was up-regulated to an inordinate degree causing the high white cell count. He told me to start using an ointment called Topicort to reduce the swelling. I am very skeptical of using this because I have in the past, with no luck. My question to you all is has anyone experienced a period of "remission" as I have and then have your symptoms return? If so, does anyone have any suggestions as to what I can do to stop this irritation before I go down the long road that I suffered previously. /Thanks
CommentFor KimB: It took me a little while to start to feel better. I used to have a discharge but the nystatin took care of it. However, I think the nerve damage is still there. lately when I take the nystatin I am burning more. I think its beacuse, theory of course, I have done all I can do and perhaps the yeast is gone or close. Now I just have diarrhea, so methinks thats the problem. I have always followed the candida diet, so i think ive reached a point where i am going to stay, and now I must find another alternative. I have asacol for the proctitis but have yet to take one, as my many reactions and this contains aspirin. i havent taken an aspirin since childhood so i dont know what to expect. i think it would help me though. I also found that my husband rubbing my lower back and buttocks towards the legs relieves pain. and inward only on the buttocks sometimes he is able to thwart a flare up. but I still do get them. i have noticed salt aggravtes as well as fatty foods. so by eating in small bites and small meals helps. somedays i feel good and we try intercourse, but its not an everyday thing! Hopefully over time it will. i looked up online the coccyx area of the lower back, its basically the tailbone area controls the genitalia, so my hubby has been working on that and the very inner thigh and that has helped. take care, laurel
CommentHi, I'm new to this list and I hope some of you will be able to answer some of my questions!! I have vestibulitis - my vestibule is very red and very sore to touch. I have never had intercourse without pain. I'm 24, I married my wonderful husband at age 22 and on our honeymoon we discovered our little problem: excrutiating pain during intercourse. I'm fortunate that I don't have 24/7 pain, I'm sorry for those who do. I have many questions: it seems like so many of you on this forum are dealing with yeast and oxalates. I know my problem has many causes and I believe my VVS was caused by topical yeast infection creams. My vagina flora has been out of whack and I'm really interested in some of the probiotics you have mentioned, although I'm not sure whether they would work for me. My doctor said I have lactobascillosis - an overgrowth of the good bacteria caused by a previous infection. I am sick of antibiotics and will never take them again! Also, it sound like most of you here developed this later in life and contribute hormonal changes to the problem. Even though I have primary VVS, I think hormones were a factor in my condition - I have PCOS so my hormone levels are all ready abnormal. An ignorant doctor treated ignorant me with BCP - I took myself off it and I think that may have played a role.I do believe diet plays a role as well. I'm a vegetarian, I eat a lot of soy, I also have quite a high-carb diet (rice, pasta, etc). I just don't know whether I have a yeast problem - I'm going to try the spit test in the morning! I do have a few 'anal' problems as well - I often have pain and bleeding with my bowel movements. I have noticed that I always have these anal problems after I've been to the pharmacy for a yeast infection cream (I'll never use these again!). What do you think about all this? Do I have psycho vaginal flora? I'm so thankful that our struggles have only made our marriage stronger - we fight this as a team and support each other when it seems to much to bear, and this may sound corny to some of you, but God has given us the strength to cope with this and he has been so good to us - he certainly knew what I needed in a husband! We will never give up, I refuse to just live with this - I WILL BE CURED!!! And one day I will discover why people like intercourse. At the moment the thought of penetration makes me sick from fear. Boo :)
CommentTo the person who posted anonymously about the discharge, I just went to the doctor last Tuesday for some peeling I have been having for months and she told me that most of our discharge is made up of shedding skin cells. I however had peeling of the vulva in sheets from a chemical reaction, but it is normal to see sin cells in your discharge. And girl, it's not gross at all. I know more about what my vulva and discharges look like now more than I ever did. Before this I never looked at myself. to the person who was wondering about die off, I think it was Su, I have read ALOT about die-off. I noticed a little itching a bit after I started the GSE and Olive Leaf as well, but not much. I don't typically have a problem with vaginal yeast infections. If you can go see Wendy, I'd definately do that. I need to give her a call soon. I wrote her a letter and need to send it. She sent me a little daily devotional book that is so sweet. She is so, so, so nice! I just wish I lived closer!I actually found a doctor that listens to me! She did a strep test last week and was surprised none of the other 9 doctors had done that and she sent me for a blood test. I kept telling these doctors that I have diabetes in my family and diabetes CAN cause vulvar problems and yet noone sent me for any blood work at all. My blood sugar is fine. As a matter of fact, the office called me Monday morning and told me I am the picture of perfect health. My liver and kidney enzymes are great, my blood cell counts are great, thyroid is great and my immune system is great. I said, well I wish someone would say that there's SOMETHING wrong with me so I'd know I had pain for a reason. She told me to stick with the low Ox diet and to stay off of my BC's for at least 3 more months and see if it helps. She also was shocked when I told her that I had been on flagyl for 8 months off and on because of supposed bacterial vaginosis. She said that they NEVER should have given me another dose after the second if it didn't work. I also had doctor # 9 tell me that I may never have had bacteria in the first place, that alot of doctors can't read what they see in a microscope correctly and that I shouldn't have been on Flagyl that long. But if that's part of the cause of this, then what can I do to correct it? I have NO signs of yeast and my lactobacilli are flourishing and no signs of bacteria at all. I noticed some changes in my burning and redness this week, less than usual, but I have been VERY swollen for days, hmmmmmmmm. I wasn't swollen when I went to the office last week. Then I ate 3 slices of pizza yesterday and today I am in much more pain. May I just take a moment to feel so sorry for us all. Who says we always have to be strong? I think we are the strongest women there are, living with pain daily. So we can throw ourselves a pity party once in awhile! About the vitamin B, which vitamin B should we try? I can't remember exactly, but I seem to recall that one of the certain B vitamins were a no, no. I certainly don't want to try the wrong thing. I was on a B-Complex when I had the supposed BV because they are supposed to help clear it up. It cleared up alright, and went into v.v.So if someone could clearify WHICH B vitamin we need, I'd appreciate it greatly.
CommentJust one more thing for Su- I have pain in my joints at times as well. It started about 4 months after the v.v. showed up. Wendy even asked me if I had some joint pain. I think she did when she had pain as well. Don't know why it happens, but apparently it does.
CommentTo Candi: I've been reading up on vitamins and minerals for thirty years. That doesn't make me any kind of expert but somewhere along the line I remember reading that taking large does of a single B vitamin can make you deficient in others. I don't know why or if that is even still accepted as a rule. Anyone out there know if i'm right? I would hate to see some of you have more problems if just taking a multi B would avoid them.
CommentSu, what is ozonized oil ? And could you post a link to the website you mentioned, where you read about it.Thanks much
CommentCandi - I also have joint pain (and muscle pain), which I am almost positive is caused by candida. When I first started treating myself for it, once I got better, I noticed also that when I would eat something like pizza, I would get discharge and burning. This is how I knew that my problem was yeast. I couldn't tell this in the beginning, not until I was on the diet for a while, because my burning was so bad that it didn't seem to matter what I ate, I couldn't tell a difference. BUT, once I got to the point where I wasn't burning all the time, I could definitely tell which foods I should not have been eating.
CommentCrystal-Did you have joint pain all of the time? Mine usually bother me when I first get up in the am and for a few hours after. the other day my wrists and ankles and fingers hurt so bad all day that I took some Aleve, even though I didn't want to and it still didn't help. So when you have candida it makes it worse when you eat things like pizza? I've been told that I don't have a yeast infection per se, but I'm convinced that I have yeast in my system. I think most people do, some just have more and some react worse than others. I don't think yeast is the root of my problem though. I never had yeast infections and I'm almost 31. I got v.v. right after discontinuing my BC pills and after ALOT of Flagyl for bacteria that I may not have even had. Usually when you get BV it returns every so often and it hasn't.Su-I have heard that we get worse before we get better! Just keep telling yourself that and stay strong! I KNOW it's probably a die-off thing that you are experiencing. The little buggers have to leave your bodies somehow and of course they will torture us to do so. :o)Instead of discontinuing the GSE and/or the Olive Leaf and then restarting, maybe try to either stick it out or use less. How much of each do you normally take per day of both? I've noticed some changes as well this week as well. I am so swollen and I have some itching and I never had itching before. And I have areas of less redness! So the bad comes with the good sometimes. I am thinking that my swelling might be from taking N-AG. It started right about the same day. Wendy tested negative to it, but I decided to try anyways because I tested positive, but she did at first too and then after a few days went negative. Looks like I can't handle it either. Only it stinks because I have noticed some improvement in the redness, but if it's going to cause more pain all in al then I'll just stick with the low ox diet, ox-absorb, calcium, olive leaf and GSE. I take olive leaf and only 2-3 drops of GSE in my water. And I ONLY dring WATER. I don't even crave sodas anymore. I had a root beer the other day when I was out, the low ox diet says its ok to have root beer, don't know why it's ok and other sodas aren't, but I felt so bloated afterwards. I am just used to ordering a soda when I go out to eat and didn't think twice about it. Does anyone know anything natural for gas pains? I think that pizza did me in in more ways than one! Have a great day ladies!
CommentBelow is the link to the ozonized oil I was talking about. The article on how it helps vv is about half way down. I think it is a company in Italy that makes it. I ordered some, and all the corresponse was in half English and half Italian. I am not going to use it yet, I am still staying strong with the GFSE and Olive leaf. Tracy: I to have had stages of remmission, then one day wake up and here we go again!! Frustrating is a light work to use!! The last time it happend to me, I was able to go back and realized that I was on a "natural Jucing" kick. My husband and I would juice about a dozen carrots a day, applies, citrus you name it!! Of course now I know that all that jucie was loaded with oxolates, sugar and god knows what else! The whole theory about what we are putting into our body is really clicking with me here? Candi: I also suffer from severe joint pain, especially my feet! I can hardly walk in the morning!! http://www.ossigenoattivo.it/../olioappengl.htm
CommentSu-Let us know how the oil works when you decide to use it. To anyone on the low ox diet, it comes in capsuls as well, but they contain wheat germ so your best bet is not to use it in cap form. Olive oil is an amazing thing. Even the bible, for those that believe this way, referred to the olive leaf on many occasions. I ate olives like candy when I was little. I was going to buy some, but wasn't sure if we could eat them on the low ox diet. I sure hope so since I'm taking olive leaf everyday! If anyone knows if we can eat them let me know.
Commentone more thing, I am almost totally convinced that N-AG caused my swelling this past week. I took one yesterday a.m. and then realized my swelling started the day after I took it for the first time. I didn't take my afternoon or nighttime dose and noticed my swelling is deminished this morning. It's not gone, but looks less. I'll let it go away completely and then try to reintroduce the N-AG and if the swelling returns then I know it was that, that caused it.
Commentthis is gross but i have thick clumpy discharge thats really sticky...i dont have signs of a yeast infection, i dont itch and im not red....but i take acidopolis three times a day, so i know its not a yeast infection....i know its not a bacterial infection casue i just got over it last week....does anyone have this problem or can give advice or knows what this is...
CommentTara, depending on where you are in your cycle determines what your discharge will look like. Plus you are getting over a bacterial infection. I have the same type of discharge sometimes. This may help to answer your question. http://www.everything2.com/index.pl?node=Normal%20and%20pathological%20vaginal%20discharge
CommentTo Candi, the phytoestrogens in soy can compete with your body's estrogen at estrogen receptor sites around the vulva -- which means your vulva doesn't get enough estrogen! And low estrogen can cause atrophy and burning/tearing. Try cutting out the soy for a few months and see if the burning goes away.
CommentJes-Thanks for the advise, but I think you may have me and someone else mixed up. I DO have peeling etc. and the doc said it is from a chemical burn, I used gyne-lotrimin cream then tried estrogen cream and had reactions from both then went swimming. I DON'T however eat soy. I'm a carnivore all the way. Alot of women on here DO eat soy since they are vegans. I get confused as to who eats what etc. But thank you for your help. I was so frusterated with the peeling and thought it was probably because of the creams and chlorine, but needed to make sure. Haven't had any in about 5 days so I need to just make sure I don't irritate myself at all. But my swelling returned. That may be from trying N-AG. It seemed to help some with my redness, but I am swollen badly so I'm not sure what to do. I'll go without it for now, until the swelling goes away and then maybe reintroduce it just once a day and see what happens. I haven't taken it since yesterday morning and the redness that had deminished is now back and I haven't eaten anything bad for me. It's so frusterating. Miri-Are you out there? Just wanted to check how you are doing! Joanne too?!?!?!
CommentJes- Are there any other foods I should avoid that may compete with my estrogen? Has anyone else tried N-AG? And if so did you have any side effects from it? I know Wendy got bad headaches, but I'll deal with a headache if it helps my vulva. I'm farmiliar with migranes and would gladly trade my areas of pain for a bit. Ya know the old saying, sex gets rid of headaches. I'll trade my vulvar pain for a headache and then just have sex to help my head. Oh wouldn't that be nice. I'm starting to forget what it feels like!
CommentI just wanna leave a little trick I use to sooth the pain, especially right after intercourse. I apply some aveeno lavender soap and gently wash the area with it. Not that I want to advertise aveeno or anything but I think there is something in the oatmeal that might have a calming effect on nerve?? Anyways it works on me, does not solve it 100%, but I would say calms my area a lot faster thatn before.
CommentHello,I would just like to say thankyou everyone who has emailed me with such great support. When i last posted here i was so very down & upset that ive got this dreadful life condition & thought i had no one there to understand me as i didnt really understand myself. I just want to say thankyou Dr Glazier for putting together this page so we can all help each other. My pain today is feeling better & im now on 40mg Amitriptyline a nite & the side affects (hot & cold flushes) are finally starting to calm down - at last! Ive stopped the steriod cream & ive found CAMOMILE AQUEOUS CREAM so very soothing & i apply every day now! Its made a big difference from the very sore & dried out chapped skin. Does anyone live in london area that is going to the Vulval Vestiblitus Meeting on Sat 6th Sept at Finchley Rd Hall. Im really looking forward to the day & meeting the doctors & other suffers for advise & help. Anyone who wants to attend should let me know & i will forward you the details. I beleive theres about 20+ suffers attending. Is anyone already attending?take care everyone X
CommentJayne-I'm so glad you are feeling better! And I'm glad you threw out the steroid ointment. It IS better to have support from others who can relate to us. Let us know how your meeting goes! Take care hun and God bless
CommentJayne, I used to live in London - in fact, that's where I was when this all started. Maybe it's something in the water. :) Anyway, I WISH I could attend the meeting. I would love to meet some fellow sufferers face to face. You're so lucky!! Anyway, please let us know how it goes ok? Best wishes, Shannon
Commenti have a question. when i have sex i missonary position with my bf, it always burns when i urinate after sex. a doctor told me its because ur urethra gets irritated from sex. Me and my bf tried having sex from behind, it still burns when i urinate...why does it still burn if the urethra isnt being touched in that position?
CommentTo the person that asked about burning when you urinate - it sounds like cystitis. I think the missionary position is bad for cystitis because all kinds of muck is literally getting pushed up inside your urethra. But I'm pretty sure this can happen with any position because there are just so many fluids sloshing around down there. I used to suffer from cystitis but as long as I urinated less than 10 minutes after sex (it's a pain but it becomes routine), I was fine. Best wishes, Shannon
CommentThankyou Candi & Shannon - its only 1 week on sat till the VULVAL VESTIBILITUS WORKSHOP DAY! Im so looking forward to getting some help - then hopefully what i find out will then help us all all over the world! I will be posting all the infomation for everyone who cant make it on Monday 8th Sept.XX
CommentThis is to Amy S about the inflammation on the inside of the vagina. I have this so bad. A biopsy showed athrophy and inflammation. Just to touch it aches all the way up my vagina. I went to have the spot cryoed (frozen) and it was too large an area. I am on a list to go to a vulvar pain specialist . Don't know when I will get in. I have none of the itching, yeast problems or bumps like all these post are about. I have tearing and pain with sex which I haven't had in a year. THis inflammation all started when I started using dilators to increase the size of the opening of my vagina. I have had so many surgeries there that it has shrunk. I don't know if you would even say I have vulvadynia or vestibulitis. I have been dealing with this for 17 years since I had a complete hysterectomy..... bad idea. Anyhow, if you get a clue on this I would like to know. Does your area bleed> The dr says just to rub over the top of the area makes mine start to bleed. It is really a drag. I have a very understanding husband!!
CommentI have no yet been diagnosed with vulvodynia however, i've been researching and am almost positive that i have it. I have been suffering with this problem for about 11 months now and honestly, it has made my life miserable. I have an appointment with Dr. Glazer next week. I"m sure he'll explain a lot to me....but i'd like to know where else i should start. This is making me so sad.
CommentJust wanted to give an update. I have had recurrent yeast infections since 1994. I posted a few years ago after it developed into VVS and I FINALLY found a diagnosis after so many doctors. So the latest is that last year I did go through 12 shots of interferon that were VERY painful, but in the end didn't work. I then had surgery and after surgery my doctor encouraged me to stretch the scarring out by have sex. At first it did hurt. And then sex got better. After a month and a half of having sex - I got pregnant! Oops didn't really plan that. But sex was better. So am I cured? Not sure. Can't get my hopes up too much, but sex is DEFINITELY better. No pain at all around opening like before with VVS. And not one yeast infection. Just not having a lot of sex due to pregnancy. I'm due this Oct so I can make up for lost time in the sex department after the baby is born (or I hope!) Take care! -Lucy
CommentLiz mack: i have inflammation too, i cant get rid of it, when ever i go to the gyno , she says im inflammed with alot of white blood cells, but nothing is wrong with me whenever i go
Commentdoes anyone get severe breast pain? i just get it in one breast and its driving me up the wall, the sonogram shows nothing!
CommentT.P- Have you noticed any lumps in your breast? I used to get a lump about 2 weeks before my period and then it would disappear once I started menstruating. Now My breasts just get really sore, like right now and then a few days after menstruation starts it goes away. Does yours come and go or is it constant? Is it localized to one breast or both or to certain areas on the breast?
Commentcandi, i just get the soreness in my right breast.my left breast is always fine. i never noticed any lumps, but if feels really sore that i actually went home sick from work cause of it. Sometimes it can feel like theirs a knot in my chest. The pain last for a couple of months then goes away for a couple of months, i just got it back again. I got a sonogram last year and the doctor said there was nothing there, but i made a doctor appointment next thursday, maybe the doctor will suggest another type of test.
CommentTP-id you have toe sonogram when the lump was there? It may just be a fibroid (Ibelieve that's what my doc called it).She just felt it and wasn't worried at all. I was 17 when I found it and didn't tell my mom for a month. Then I thought I had cancer and got scared so I told her and she took me to the doc right away. She (the doctor) told me if women didn't have lumps in their breasts, we would't have breasts. The older I get the les it shows up each month. I haven't had it in about 4 months now. I actually got worried that I didn't have it. It became a routine part of my cycle. My nipples were hurting this week though. For 3 days. It was awful. But then I realized it's almost that time of the month. Make sure to see your doctor when the lump is present and you can actually feel it. Usually from what I have been told, if it is cancer it doesn't hurt. But I've never had breast cancer so I don't know. Here is a site you can check out on breast lumps and bumps.But still if it hurting and you feel a lump right now, make an appointment since there will be something to see on the sonogram. It never hurts to be sure. Fibroids are common though. they can hurt slightly or severly they can come and go whenever they please. http://womenshealth.about.com/library/symptoms/blsymptoms_cysticbreast.htm
CommentWhoops, sorry. You already made the appointment! Let me know how it goes!
Commentcandi, i never noticed any lumps in my breasts, it just gets really sore on the bottom of my breast, feels like the muslce is really sore of something, it feels a little better today, but i will let u know what happens
CommentDoes vestibulitits make u more prone to bacterial and yeast infections?
CommentTo Tara, what does the Dr do for the inflammation? Any medication? When you insert a finger and push on that area is it just really horrible pain that shoots thru your vagina? Does your skin sluff off when touched and bleed? Something has to help this..it isn't normal. When I was in college in the early 70's I had warts. I wonder if this is the result of that type of virus? Just a guess, that is all any of my thoughts are on all this, as the Drs don't have a clue. I have been to so many that I can't even count.Any info you have would be appreciated.
CommentDoes anyone know what HTO ( hexadecyl tetradecanoyl octadecanoate) is?The VPF recommends it but there is NO info that I can find online about it. The article writen by the VPF doesn't explain what it is. Just mentions the name.
CommentLiz macK...my doctor doesnt do anything for the inflammation. i didnt no if u can do something for it or not. i get a really weird sore pain if i push up on my vagina with my fingers, or if the doctor puts her fingers in me. the only past i had is that i had trichominosis (spelled wrong) for like a year when i was younger and i didnt no i had it. I had internal sonograms for the pain but it always comes back negetive.
CommentI keep getting cottage cheese like discharge that keeps oozing out of me....im not itchy, and im not red.....can this still be a yeast infection? or what else can it be?
CommentKimB- I had a discharge like that when I had BV. It was caused from the Metrogel I was using. It caused the skin cells to slough off and then when it mixed with the usual discharge it became cheesy looking like that. It didn't pour out, but it was alot. Are you using anything vaginally?
CommentHello everyone, I am new to this guestbook. I am so glad that I finally found this. I hate to hear of everyone problems, but it sounds like a good network, that works well w/ one another. Let me give my history for the past year. October 22, 02 I had perineoplasty surgery. Because of giving birth 2x's previously, I had no hymen muscle nor was my sphincter muscles together the way they should have been. I had no control of my bowels and had many accidents. That was the reason for the surgery in the first place, to correct my sphincter muscles and correct my hymen muscle (HORRIBLE SURGERY!!!!!). Since then I've had nothing but problems. Due to surgery my sphincter muscles are still not working properly and the size of my vagina now is WAY to small. I tried the dilators (to painful). Since this my doctor quit practicing and I went to a new gyno, who had to give me numbing shot to even be able to examine me. She told me at that time that I was pre-pubertive in size and that my problem was so severe that she referred me to a doc at Vanderbilt. I have been going there since March, and every exam is very painful (turning bright red to even touch). They told me then I had vulvodynia, (IRRITATION all the time, even when wiping from urination, uncomfortable sitting in certain positions, and back pain. They put me on AmitriptyIene (25mg) in April and they were doing nothing for me. I went back in June and they told me to work my way up to 75mg and call them when I have done so. I called them last week, told them I was on the 75mg and that meds, still weren't working, still having all symptoms and more. They called back and told me the next step would be physical therapy and I said NO to that (they weren't even sure if that would work), and since has suggested I seek a 2nd opinion. I feel that since being on these meds, that they have completely changed me as a person. I've been having very bad mood swings, exhausted all the time (taking diet pills to even make it through the day, for energy. This past Saturday I had uncontrolabIe crying, Tuesday the same thing. For the most part my husband has been very patient through all of this, but like I said before, for whatever reason, everyone around me has seen drastic changes in me since all of this, and pretty much everyone around me is having a hard time dealing, because noone can understand why I am being the way that I am, so we have a little bit of frustation now and again, because I don't even have the answers on why I am being the way that I am. I have since decided to quit taking the pills, so I am now trying to wein myself off of them. I could go on and on, but I sure everyone has heard enough about me. I would just like to know if anyone has any suggestions for me. Good Luck to all of you and getting YOUR problems taking care of. Thank you for listening.
CommentMeesha-I am so sorry to hear about your pain. I am not farmiliar with your situation, but I hope that someone on here might be so they can give you some advise or even refer you to a doctor that may be able to help. Where do you live? I was on Elavil for about 3 months as well and weened myself off a month ago. I totally know how it was making you feel. I couldn't get enough sleep. I was craving sweets constantly so I gained some weight. I was on Pamelor previously and it made me depressed and just nasty to people and I LOST a ton of weight. there are many different types of antidepressants out there, it's just finding one that your body can handle. And it takes time becasue they take time to start working. Some doctors are using Neurontin (an anti-epileptic) for v.v. I recently heard that Dateline did a show about it though and said the makers are being sued. Not sure why though as I didn't see it. My doctor suggested it, but I didn't feel comfortable taking it. The specialist I saw in Gainesville,Fl. has over 400 women on Elavil (amitrip.)I know that it's just not going to help me. They make me depressed and then of course stress and all of that adds to the pain. Maybe try to see if your doctor will try you on somehting else. I am not one for medications anymore and am trying the natural approach. Low Oxalate diet, calcium citrate (which I think I may be sensitive to) Ox-absorb. But your pain is somewhat different because of your surgery. It definately wouldn't hurt to at least try the diet and see if it helps deminish some of your symptoms. ALos I am mailing my payment to the VPF tomorrow for my yearly membership. They enclude a list of doctors who are willing to work with us. Let me know where you live and as soon as I get the list I can give you some names. And hopefully someone on here can as well, it may take about 2 weeks to get my info. I just think that from what I've read of Dr. Solomons that he is great. The VPF runs off of donations and for such a small budget (about $400,000 a year from the paper I received) he has dome amazing research. The next step in his research is for those of us who acquired this after being on a long bout of antibiotics and antifungals. There are always new people posting here so if you don't get a response right away just keep posting and reading. Has anyone who was taking calcium citrate had any side effects from it? I missed my citrate yesterday and my burnig and redness was much less. I took it before bed ans got up this morning and was burning and more red. Maybe a coinsicence maybe not. I know some people can't tolerate it.
Commentim not using any medicines, but i know what u mean. When i had a bacterial infection awhile back, i used metrogel and got a cottage cheese discharge. But right now i get the discharge without using any medications.
CommentMy daughter is currently suffering from Interstitial Cystitis and Vulvoydia. While a holistic program is helping the IC it does not seem to be helping the vuvolydynia enough that sex is possible. This has been going on for years and we are ready for more intense treatment. Can anyone who has used Dr Glazers program or had the surgery please give me some feedback on either?
CommentChristine, tell your daughter NOT to let a doctor cut on her vulva! It is NOT a cure. And about 98% of the time the pain will move to another part of the vulva.Go here: http://www.vulvarpainfoundation.org/To become a member it is $40 and you will receive a ton of information as well as the low oxalate diet cookbook. The diet is followed by patients with IC as well. Try EVERYTHING else before surgery. I saw a specialist in April and he will do the surgery only if the patient requests it. HE said there are many problems wiht it. Of course the doctor I regularly see (or did) pushed for the surgery and told me noone he has performed it on had any problems. But he's a surgeon, he gets paid ALOT do do the procedure. Please tell her to research it and speak to women who have had it before going that route. $40 for a membership to the VPF is a drop in the bucket when you consider how much surgery will cost. The membership fee also goes to the research of vulvar disorders by Dr. Solomons. You will receive info on the Pain Project as well. I have some info that I received with my Low Oxalate Cookbook and if you would like a copy feel free to e-mail me and I would be more than happy to send it to you. I just sent my membership fee off today so I don't have the list of doctors or any of the other info they offer yet. What state does your daughter live in?
CommentTo Kim b--Can you please not go by the same name as I have been doing, its too confusing. Thanks :)
CommentTo Christine: Regarding surgery to correct vulvodynia. I have written in past guestbooks how my wife suffered from a recurrent tear at the six o'clock position of her vulva. Surgery to form a new scar did not help and the tear still occurs. I have read on this site how some women have had vestibular glands removed to relieve pain, some have had good results others still suffer. Doctors have performed cryogenic surgery, freezing of the tissue of the vulvar and caused more damage. Read past guestbooks, post specific symptoms and please don't get talked into surgery. Best of luck.
Commentkim b....sorry i am new to this, didnt no there was another kim :)
Commenthello all.i'm 21 years old and i recently self-diagnosed myself with vulvodynia. i have been suffering with this for about a year now and have been to multiple doctors who have all given me tons of useless medication. i am extremely depressed and im getting ready to complete my last year in college. i've been reseaching for about 3 weeks now and have come to the conclusion that i will have to try reccomendations for women who suffer from this rather than doctors who aren't helping. i started on paxil today for my on-going depression and anxiety. i'm currently planning out a strict diet that doesn't include sugar or caffeine. i am also going to try grapefruit seed extract, tea tree oil suppossitories, and calcium citrate. i guess i'm just writing to join in the community and possibly get some support. i want to rip my hair out every day. this is a complete nightmare.
CommentErika_ We have been suffering for the same period of time. It will be a year on September 17th. E-mail me anytime!My pain seems to be finicky lately. Yesterday was a really good day for a change and then today was just awful. Been wracking my brain to figure out what I did or didn't do differently as I have been lacking on my daily notes. The pressure you are under being in school doesn't help :o)Stress adds to our pain. Just be careful with adding in new supplements. Add only one at a time. Do one then wait a week or two before adding another so you know how your pain reacts to them. I cut out caffeine as well and it was hard at first but now all I crave is water. I put GSE in all of my bottles. Just 2-3 drops instead of the 5-15 drops 3 times a day like the bottle says. I couldn't choke it down otherwise. Now I can tolerate about 5 drops in a bottle and even though I can taste it, it doesn't bother me. According to the VP Foundation, the calcium citrate and Ox-Absorb shoule be timed according to your oxalate peaks. Unless you have your urine tested, you don't know when the peaks are. I am saving up for the testing right now, but I still take the Ox-Ab with each meal and take calcium citrate after breakfast and after lunch. Which isn't always at the same time everyday. So maybe the changes I had yesterday were because of the TIME I took my supplements. There have been many women who followed the suggestions of the VPF who participated in the Pain Project who are 100% better. Some are only 80%. But that's better than what I am now! I'd deal with 50%. But there is ongoing research. And the next step is following up on our complaints about antibiotics and antifungals being the cause. Antibiotics can eliminate "good" bacteria which decompose oxalate in the intestine before it enters the bloodstream.Dietary changes as well as trauma (birth of a child, rough catheterization, sexual intercourse and injuries as a result of accidents or surgeries have been related to the onset of symptoms as well.
CommentHi Ladies & Gentlemen. I am middle-aged, live in Sydney, Australia and have been following your correspondence for about 5 years. Some of you seem like old friends. Lynne, Frank & Laurel to mention a few. I have tried many of your suggestions and am very grateful for your ideas. I haven't written prior to this because I had nothing to offer. NOW I DO!!! I have been suffering from this horrible ailment for about 5 years which started on a trip to Darwin which is the very hot, steamy (but very nice) capital of the Northern Territory. The climate must have really set off what had been an occasion outbreak to a full blown, permanent condition. Doctors were useless and like most of you I've been through dozens. I won't bore you with all the remedies I tried, orthodox & alternative, because I have a file 2" thick. I will just say that I was finally diagnosed after a biopsy (which I insisted on) as having "mild dermatitis of an unknown cause". How helpful!!!What works for me is 1000 mg of glucosamine sulphate, taken with dinner at night. It's strange because I had tried the NAG but it did not do a thing. On one of my many recent searches I came across a website which stated 65% of women who have VV and take this stuff found an improvement. I have to stress that it is not a cure but it does relieve. Like taking an aspirin. If you don't take it the pain comes back. Also I noticed that several drinks & foods have to be avoided after midday or you will find the symptoms returning. So far I avoid chocolate (yes, sorry, too much caffeine), coffee, tea & even hot herbal teas. I have no idea why but they seem to block the effect of the glucosamine. However I don't seem to have any problem if I have these things in the morning. Also I noticed tummy liners like antacids and psyllium seeds have a blocking effect. No problem with achohol thankfully! I have many pain free nights now compared to one in a blue moon. I am a much happier person with a very pleased husband.I hope this helps a good number of you and I will be checking the site to see if there are any other success stories. Remember, get sulphate, not some other form of glucosamine and be careful if you are allergic to fish because if comes from sharks. All the best!!
CommentHi Carol Bondi. Well it's good to see a fellow Australian on the guestbook - I thought I was the only one! It's so fantastic to hear that you've experienced some relief. What is glucosamine? What is it for? How does it work? You say you have a very pleased husband - does this mean you're even able to have sex now? My partner and I had a little "roll in the hay" this morning and it was lovely but I sure do miss having "proper" sex. I've just found that beating this needs to be a full-on project. Because I'm juggling the final stages of a media production degree and a part-time job, I just don't have the mental space necessary to devote myself to getting well. I've really thought about this and know that I am not just procrastinating or making excuses. I've already cut out coffee which was huge for me and I notice that when I have had the odd cup, I've definitely been in pain. I had a huge blowout last week - coffee, chocolate, tomato, sugar AND spinach and I was in so much pain the next morning!! I'm kind of glad though because at least I was able to measure their effects. On another topic - can anyone shed any light on the Vitamin B factor eg. what type of Vitamin B would be good to take? Best wishes, Shannon
CommentCarol-Thank you SO much! I have been reading up on glucosamines and gluc. sulfate is the one most people use. I have been taking NAG as well and noticed some swelling so I discontinued it for a bit and then just cut my dose. The VPF has for the past year been using HTO also, but I can't find it ANYWHERE. There is also absolutely nothing online about it.I have been hearing a great deal about products made from shark cartilage and many studies are being done on sharks. They are the only species so far that they have come acros that don't get cancer.Thank you so much again for the info. And don't feel like you have to contribute something medical wise to post. Just pop in and say hi :o)We all need each others encouragement and friendship.
CommentShannon- Glucosamine is an amino sugar. It is the building block of joint tissues and other connective tissues."These amino sugars can form large molecular units which are incorporated into connective tissue, joint constituents and components of bone, skin and other internal organs." Many artharitis sufferers use this. It has an antiflammatory effect as well. Which may be why Carol has pain when she misses a dose. If you don't notice a difference in pain in about 8 days then glucosamine may not work for you. The VPF considers V.V. a Connective Tissue Disorder.When it's not caused by things like, chronic yeast infections, strep, surgical procedures etc. of courseThe supplements that Wendy told us about are used by the VPF. And hey, she's better right? And I'm holding ya to the diet when school is finished. ;o) Then you can have luvins with that adorable man of yours again!I had peanut butter cookies last night. But I have PMS and crave sweets SO bad now. I was good all week, I deserved them. For anyone who is looking for Ox-Absorb CHEAP, Ritecare.com has them the cheapest I have found. $28 includes S & H. I paid $38 to have them sent from a place an hour away. I need them cheap since I take 12 a day.
CommentHi to all you fellow sufferers. I have written in the guestbook a few times and just thought I would let you all know about a medication I have tried and been sucessful with. I was diagnosed by a Phila. specialist about 3 months ago with vulvodynia. The Dr put me on a drugcalled Effexor XR and it really seems to make me feel 100% better. He started me out with 37.5 mlg for about 2 weeks, then I went to 75 mlg for the next 2 weeks and now I am on 150 mlg. In the begining it felt a little strange taking the anti-depressent but now I feel great. Not only did it relieve all my pain when I reached the 150 mlg it also calmed me down a lot. I hope this helps you guys and I highly suggest @ least trying effexor XR for a month...you will see a great difference in your pain and you whole outlook! Take care everyone!
CommentYes please can someone tell us about B vitamins. I have heard good and bad things about vulvodynia and B vitamins. I think B2 was good and B6 was bad, but I don't know.
CommentB Vitamins: I could write for pages on B Vitamins but I'll be brief. Pick up" The Vitamin Bible" By Dr. Earl Mindell. A world of information in just a few pages. If you are going to take B vitamins do so in the form of B Complex. Vitamin B6 can be toxic above 500 milligrams, B3 also called niacin is a vasodialator, can cause something called a niacin flush bringing blood to the surface of the skin causing you to look flushed and bright red followed by burning or tingling sensation. Please use care and caution and moderation with anything new. Knowledge is power pick up the book. Best of luck.
CommentYou can look up all info about vitamins online. But there is not much as far as WHICH ones cause FLARE-UPS for us. There is a certain one that does. I dont remember if it was b-6 or not.It tells what they are usually used for etc. but us with VV can't tolerate certain vitamins. Like vitamin C. You can read all day about vitamin C, A, E etc. but as far as what causes flares a vitamin bible isn't going to answer that question. The question is what vitamin B or B's are safe for people with VV??? there was someone that posted that is taking a B vitamin, but she didn't specify and hasn't posted since.
CommentCarol-I went and bought some Glucosamine Sulfate today. I couldn't take the NAG either. I read today that they are different. I also take Ox-Absorb, 4 with every meal and calcium citrate. The glucosamine was EXPENSIVE! But everything I am taking is. I have come to learn to shop around for my supplements. Some I can even find online for a lesser price than at the store including shipping and handling and for the same brand even. Eventually we will get better! I just am a very impatient person. Better learn to change that huh? My year anniversary with v.v. is coming up soon. AGGGHHHH!
CommentI mentioned the Vitamin Bible and B6 toxicity in hopes of preventing somenone from overdosing and getting sick. At high levels vitamins can become very dangerous. I was not trying to answer which specific B vitamin was being referred to in the earlier post. There may be some ladies reading these posts who suffer from undiagnosed heart disease, loading up on certain B vitamins could prove very risky. Please take the time to learn about all the vitamins and their interactions with drugs and possible harmful doses.
CommentSorry to post again but I just had to. That unsigned post of Aug. 17 sounded too good to be true. The author claimed that a physician friend had stumbled onto the answer to the problem ..high potency B vitamin supplementation! All non-vulvodynia symptoms gone within days! Ladies I don't buy it. Not one word. Maybe if this person was living on rice and water but not in our society. We are bombarded with "Enriched" foods stuffed with vitamins to give them some value. I don't believe any health care professional would find fault with taking a multiple B supplement but I firmly believe taking specific high potency B's can be a problem. Please do not take this the wrong way but I would like to see some explanation of flare ups or cures attributed to B vitamins. Don't take anything you read here including what I have just written as accurate. Educate yourselves and protect yourselves from the quacks and golddiggers who prey upon your pain.
CommentCarol how long did it take before you started to notice the effects of glucosamine sulfate? Do you take only one pill a day and what is the MG?
CommentHi Folks. Thanks for your feedback. Candi answered the queries about what glucosamine was. How long did I have to wait? I was better the first night. It gets into the bloodstream very quickly. I still have outbreaks though (not many) which I attribute to the hour I took it. I think on an empty stomach is best. If taken with food it may not digest and do its work properly. So one in the morning, if you experience pain during the day, and one at least 1/2 hour before dinner. The mg is milligrams. My husband is happy because I'm not moaning all the time. Marital relations have not been effected by this complaint so I've been lucky there. I hope you girls improve, especially as the stuff is expensive. Everyone is different so it may take a couple of weeks for some. And yes, it does help the old arthritic aches & pains too! It's readily available here because we have so many sharks but I would have thought you could get it on the Net if not from your local health food store. Please keep me posted. Cheers.
CommentI wanted to make a correction: Glucosamine is derived from crab, lobster or shrimp shells. Anyone who is allergic to shell fish should avoid this supplement. Don't take my word for it, look it up on the internet. Shark cartilage is something entirely different..
CommentCan someone help me?...I am 32 years old, I was diagnosed with vulvodynia and vulvar vestibulitis almost 10 years ago (after going through about 6 doctors), the first 3 years I was in agony, chronic bacterial and yeast infections, swelling, rash, severe burning and bartholin gland ache which would radiate down my legs and into my buttocks (btw...I also suffer from hemerroids). I would go through times where I would feel a bit better, then it would come back. I took Elavil for almost 5 years and didn't really notice a big difference...I was also very very depressed. I have endometreosis and take Yasmin oral contraceptive to control cramping and pain associated with that. After several bouts with what I thought were chronic UTI's, I was diagnosed this year with interstitial cystitis on top of everything. I had a couple of tolerable years but over the last 4 or 5 months things have been going south again. Approx a month ago I broke out in a weird rash with pustules and had a couple of round bright red hot spots near the bend of my leg near the inside of my underwear elastic, I foolishly decided to go to to local express care clinic where they promptly told me that it didn't look like genital herpes but it probably was and gave me a scrip for valtrex. Without having my medical history they sent me off with that kind of diagnosis and it devastated me...I was severely depressed and almost suicidal because my attitude was...that's it i can't take anymore...not one more thing. Well I went to my gyno at the beginning of the next week and he told me it was not herpes and that it looked like folliculitis and he wasn't sure about the round spots (told me to stop Valtrex which wasn't doing a thing anyways) so he sent me to a dermatologist who said it was bacterial folliculitis and put me on 10 days of Dicloxacillin and 2 doses of Diflucan. Herpes culture was negative and I have not heard back from them about the bacterial culture (to isolate the exact bacteria). The bumps are gone now but I am left with the same bartholin gland pain and ache into my buttocks also my vulva is red and almost purple in spots and very sore. Vaginal culture came back with no infections present. I am so sick of these problems (as I know all of you are). Can someone get me started the right direction?...Suppliments, a good clinic in my area (central FL), advice....anything. I am back in a pretty bad depression right now and Im looking for hope. Thank you so much for reading my post.
CommentKathie_I emailed you just now.
CommentHas anyone tried estrogen cream? I tried it and had a reaction. The doctor said it can be compounded, but I don't know. What is it compounded with and how will that help to not have the same reaction?
CommentOh yeah is there a natural estrogen cream from a health store that might be better? It's just to use outside to thicken the skin. I had tried Estrace.
CommentHello to all of you. It has been a couple years since I have written in here. I am 24 and have been a sufferer since my first time having sex. Being a single felmale with this problom is so frustrating. My current boyfriend is now getting to the frustration part of it all and recently got mad at me for not wanting to have sex one morning, because I knew if I did I would be in pain all day. I don't understand why guys can't understand this. I am so frustrated and angry, back to the point where nothing can be done to fix anything so just deal with it. I have tried everything...meds, steroids, therapy and surgeries. I feel like I will never find a man who would be capable of dealing with this.
CommentJen-If you are with someone who can't be understanding of your pain or considerate of your feelings then he isn't worthy of your heart OR body!!! A real MAN would be loving and caring and care about YOU not your BODY. There ARE men out there, the right one will find you when you least expect it. Have you tried the low oxalate diet with calcium citrate and ox-absorb? The vulvar pain foundation offers testing of your urine for oxalates. They recommend that the calcium citrate be timed. IT is $350, but most insurance companies WILL reemburse you! Also a few posts ago glucosamine sulfate was mentioned. I just started that. Been pretty bad this week, being close to that time of the month and all. Don't give up, there are DECENT, LOVING, CARING, UNDERSTANDING men in this world. I'd give the current BF the boot, better to be without a man for a bit and feel good about yourself inside, than to be with one who brings you down sweetheart!
CommentTo Jen: Hope this post doesn't upset you but since I read and post here I'd like to give you my thoughts on your question. Men and Women are physically and sexually different and I don't say this to be sarcastic. I have had plenty of sex in my fifty years and the times I have had discomfort have been rare. On several occassions I have gotten a raw spot on my penis and the pain was enough to put my sex drive on hold. Not many guys experience pain like that and let's face it compassion comes with common experience and understanding. Most men such as myself are driven by testosterone and it makes us idiots at best and criminal at worst. Don't give up on love and most of all don't accept abuse of any kind. Let your b.f. read this site and understand that he may not want to go without vaginal sex. Best of luck and love.
CommentHey everybody, been reading these for several weeks, and I feel like I know everyone. Frank, I think you are great. I know women are rude to you from time to time, but it is wonderful how much you care. I would like feedback on something that is bothering me. I had not had sex in 8 mos, and then had a new partner. Immediate yeast infection. No sex with him for a month, and when I did, another yeast. It just kept getting worse and worse until I am in total agony. It just bothers me that I never had any problems until I had sex with my current boyfriend. I have been tested for every STD, all negative. Diagnosed with Vulvodynia after 7 mos of pain, and from what I am reading, that is pretty quick. Is it something I could have gotten from him? I just never had any problems until him. Very few yeast or bladder, and of course I have them all the time now. What do you guys think?
CommentMen can get yeast too. Candida can be in EVERYONE, not just women. Men just don't have the outward signs like we do. Maybe take him, if you are still together, to the health food store and get him a candida cleanse. He can drink some grapefruit seed extract in his water daily as water. Only like 2-3 drops in whatever he drinks. If you have intercourse when you have a yeast infection, you shouldn't. But if you do, then use a condom. He should also ejaculate about 10 times either manually or into a condom. I know someone who had problems with yeast and was told this by a doctor. Yeast isn't an STD, but it CAN be passed, just like a bacterial infection. Your vulvodynia is probably being caused by chronic yeast. You can have yeast in your system without having the signs in your vagina. Three things you should try, and it takes awhile to see results, is just like I suggested for your boyfriend, grapefruit seed extract in your water, a good acidophillus (one that's kept refrigerated and that contains Bifidum) and take some olive leaf capsuls everyday. You can do a candida cleanse as well. Some of us with V.V.S. can't tolerate some of the citrus in the cleansers.Just remember, these things take time and patience. Use a condom until you start feeling much better whenever you have intercourse. Also look into the candida diet. It's like other diets, hard and you want to scream, but do it for about 3 months or so with all of the other measures and see how you feel.
CommentTo Donna B.: Thanks for the kind words. Regarding your question I totally agree with Candi. The ladies here are still trying to connect the dots as to how or why they are suffering.There is another possible reason for the yeast infection, I read in the women's section of "Medscape" that there is a link between a man's ejaculation of semen and how it can alter the ph balance of the vagina. Maybe the volume or frequency of ejaculation is upsetting your vagina's healthy acidic environment. The use of condoms will rulke this out, also like Candi said having intercourse with a yeast infection is not a good idea. You really aren't lubricating properly with yeast discharge and the friction against your vaginal lining is probably causing some bad irritation. Best of luck.
CommentI thought of the yeast thing last year, and we both went on a anti-yeast diet, along with condoms. It didn't make any difference. I even thought I might be allergic to his semen, but it didn't make a difference. We went long periods of time without sex, and it used to clear up, but after a while it didn't make a difference. I am getting ready to go back on the yeast diet again, the Lifeforce plan, has anybody heard of it? It worked really great for me before, I just got lazy. Anyway, thanks for your thoughts
CommentHi. I have posted here ages ago but thought i would just update you. My name is Sharon and i am in the UK and have suffered from vulvodynia for nearly 4 years now. I wanted to email other sufferers here in the UK to swap stories, treatments and ideas. Are you still out there TEALEAF??? You answered my post back in July and i was trying to reply without success. Did you still want an email buddy? I have tried lots of treatments so maybe able to give ideas to others. If anyone is interested please mail me regarding this.Thanks Sharon P
CommentA vulvodynia specialist I am seeing has me taking a combo of glucosamine sulfate and condroitin sulfate as it helps with inflamation. Also am using a product called Prelief, which takes the acid out of foods (it's made by the makers of Beeno.) I gave up chocolate and my symptoms decreased dramatically. Also saw a dermatologist who specializes in vulvodynia, and she told me I did not have exema or psoriasis in the vulvar skin. I didn't know one could get that there, but evidently it's possible.
CommentDonna, Did you go on the pill when you started your new relationship? If you are, certain kinds have high progesterone and low estrogen which sets you up for yeast and bacteria. Yeast can't live in an estrogen environment. Also what age are you? Mine all started with yeast and I was only 41 and then after a year found out I was meno. I couldn't believe it because I was still getting my period. I am using a compounded estogen cream, it can be compounded with vit. e oil or ask for anything without alcohol in it. It feels wonderful when I put it on and has worked wonders for me. It takes time because its a slow healing process, I have been using it for a year now and only have mild flareups before my period, which I have read that thats pretty common. Also grapefruit seed works good for yeast too. I never had yeast or bacteria infections before all this started and I believe the whole cause of it is low estrogen. Good Luck to you.
CommentLynnze-I just went to see a new OB and we talked about BC's as well. I had been on Ortho Tri Cyclen and just stopped taking it right before the v.v. set in, but had just gotten off of Flagyl at the exact same time. I was told that if I get a normal period a month after going off BC's that my hormones are fine. I didn't really agree with that at all. I was put on Ortho Novum 777 in Feb. and in April felt better than I had in quite some time. Then got a yeast inf. and had a reaction to Gynelotrimin then estrogen cream. Been inflammed since. I am now off of BC's for the 2nd month after reading some women have been 100% better after about 12 weeks without the pills. It's almost that time of the month and the pain is much worse. I'm almost 31. I'm gonna give it another month off of the pills and see what happens and if no positive results then I'll go back on Ortho Tri like originally, since for 7 years I had no problems at all. Definately lack of estrogen can cause all sorts of problems. I had a bad reaction to the estrogen cream by itself. I called the pharmacy yesterday and the pharmacist said if I am sensitive to something in the cream then compounding it won't help. Do you agree? Did you try estrogen cream by itself? I'm wondering if I would be sensitive to vitamin e mixed with it. I have used vitamin E suppositories and they were ok, more gentle than breaking open a vitamin E capsule. I am just really leary of using ANYTHING on the vulva now.What does the condroitin sulfate do? I am taking the glucosamine sulfate right now. I'll probably just go back on the BC's in a month and stick to the VPF's suggestions since what they recommend is what helped Wendy. Plus the muscle testing for what I can and can't eat or take, which I'm sure some think is probably weird, but hey, I'm desperate and so far I have noticed that it works for me when it comes to things I shouldn't eat etc.But I DO cheat! I need better willpower. Before I never wanted to eat sweets, tell me I can't and it's all I want!
CommentHey Lynnze, I am 42, I had a hysterectomy 5 years ago, although I still have my ovaries. I have been looking for something soothing topically. I have been reading my nutrition book, and am seeing some good things about comfrey, lavender, and emu oil. Anybody else tried any of these? At this point I would probably try camel urine if I thought it would work!! I cleared up my last bladder infection with colloidal silver, don't know if anybody has tried this. I really don't want anymore drugs in my body, want to try and beat this naturally. I read about dead sea mud, and found the web site, but there are several kinds, does anybody know which kind has been helpful? Anyway, am so glad I found you ladies!! And you too, Frank! Keep in touch
CommentDonna B-I use Emu oil. It hasn't done anything for me but someone on here said it takes time, a little longer than estrogen cream would take, to help thicken the skin. I read estrogen cream can take at least 6 months to notice an effect. But like you said about the glucosamine, everyone is different. If you ever feel dry, As We Change makes a soothing vitamin E suppository. Its really light and won't clog your pores.
CommentSorry, that was Carol who said about glucosamines effects, that everyone is different.
CommentDonna, You might still have your ovaries but they might not be producing enough estrogen. I would get a FSH level test. That tells you if your ovaries are producing estrogen. 1-20 is normal and over that is meno. Mine was 68 and I was still having my period. I still have my period. I now take compounded Bi-est and testosterone. Its a form of estrogen made of soy and Yams but its identical to what your body produces. I also use the compounded form of estrace in a cream base without the propylene glycol in it. I believe that my skin got burned from all of the yeast meds. I used. Went a whole year tryng everything because my doctor never checked my hormones because she thought I was to young. As soon as I went on the estrogen my yeast went away. I believe the low oxlate diet is a good thing but I think you have to heal the skin first. I would definately try a new pharmacist, it has to be a pharmacy that specilizes in compounding. This cream made such a big difference and is the only thing that soothed my skin. I also believe you need the testosterone in it as it thickens and heals the skin. I go into the Yahoo group unde vulvar disorders and there is a lady named DTroll and she knows everthing about the cream. She is a saint and I believe I would have lost my sanity if it weren't for reading her posts. You have to join the Vulvar disorder group. I still use the cream and will never stop, just as a preventative. Also get your estrogen and progesterone levels checked too. My bible for two years was Screaming to be Heard by Eliazabeth Vliet. Long read but awesome book. Candi, check a different pharmacist, he doesn't know what hes talking about. I also was on the pill for eight years and then went off to get pregnant. never had a problem with the pill but coldn't get pregnant. Finally after many rounds of pergonal got pregnant and my son is 10 now. Just started having problems but I believe all those years of depleteing my body of estrogen set me up for early meno. Don't mean to scare you but I would try a new pill. In ivillage under vulvodynia message board and the birth control board there is a girl named Judie rae who has did alot of research in the pil after suffering from clitorial pain and atrophy. She knows all the pills with low progesterone and equal amounts of estrogen. In Screaming to be heard the doc. has a chapter on the pill and how some will cause vulvar burning and names the ones that you should avoid. I don't have my book here as I lent it out to a girlfriend. In the yahoo groups Dees pain started with overuse of steroid creams and horribly thinned her skin down to raw meat. The only thing that healed her was the compouned estace cream and also the Testosterone cream is a must to thicken the skin! I have alpplied my Estace in my tube with the alchol in it and it doesn't burn me anymore. Just had to see if it was the alcohol. But because you are irritated anything with alcohol in it will burn until it heals. I also changed my docor and now go to a preventive health care doc. Just don't give up, if you give in it will get worse. I know two years ao I was ready to lose it and I read everthing I could get my hands on and knowledge helped heal me and understand wht was going on. Don't believe that there is no cure because there is and I have read alot of success stories. I pray for all of you!
CommentTo Lynnze: I'm glad you have gotten relief by using a mixture of estrace and testosterone, I just wanted to mention what my wife tried. More than a year ago she saw a female gyno here in Ct. The doctor said to me " I am going to rebuild here vagina", and told me to mix equal amounts of estrace, testosterone ointment and Lociod a topical steriod. It contained alcohol and even though it burned my wife applied it twice a day for several months. This did nothing to repair or strengthen the skin that continued to tear. Obviously for women suffering from a loss of estrogen the regime you mention is a great thing, unfortunately for those who have normal range hormone levels the thinning skin and tearing remains a mystery. No doctor has been able to discover what the skin is lacking or suffering from. I can't understand this, with all the technology why can't a tissue sample be examined to find out what the cause of the thinning or tearing is? Anyway except for the discomfort there is little to lose and much to gain from trying the mixture and giving it a chance. Best of luck.
CommentHello everyone. Just wanted to keep you up to date on my progression. As most of you know, I have always associated vulvodynia with colon, yeast, and/or intestinal problems. Seems that when one hurts, either my vulva or my rectum hurts too. I finally got a competent doc to make the connection. This is definitely due to flagyll and antibitiotics destroying my insides. Anyway, I researched a drug that would perhaps help the proctitis/colitis first that I have instead of fruitlessly trying to find one for the vagina, hoping that it would trigger some kind of relief for both. Most people take a steroid for proctitis and that can aggravate both conditions. I knew I did not want to do that since I have an allergy to the steroids. So I looked up alternative treatments and found something new on the market called Asacol, or the generic is called mesalamine. It is also referred to as Rowasa, and has one other name, all are similar. It contains aspirin. I called my vulva dr and asked if I could take it. He had never heard of it since its relatively new, but said he'd call my pharmacy and talk to them and see what the exact dosage was. I have been taking it for 2 weeks and I can tell you this. Its made a world of difference. Both my rectal and vaginal symptoms are in check right now, even allowing me some bad foods here and there without incident. This drug cannot prevent flare ups that are bound to happen here and there, but this is something I consider a miracle drug. Maybe it will help some of you too. The purpose is to take two 400 mg pills 3 times a day. Right now I am on this for 6 weeks, but I think it can be a long term deal. I noticed a huge difference the second day and you all know Ive had this for 12 years. I never ever get my hopes high, but I am taking this one day at a time. I also want to say that I am chemically sensitive to everything and I havent had any side effects yet. I do want to warn people that if you have an allergy to aspirin DO NOT take this medicine, but the aspirin in it keeps all swelling away. I also wanted to say to Carol Bondi that I am so glad that you are finding relief from the NAG. Many women in the Vulvar Pain Foundation use that along with HTO, Ox Absorb and the low ox diet. I think all together have kept a lot of women pain free. But I do want to warn that I tried it and had a terrible reaction. NAG is derived from shellfish (crab shell I believe) and should know that any allergy to shellfish may cause anaphylaxis like it did me. Very scary! Most bottles carry the warning, but the bottle I got from Dr Solomons through the VPF did not, I had to call them and ask. Please be careful. And if anyone tries the Asacol, please let me know if it helps you too! Thanks and best wishes, laurel
CommentHi there. Thanks Laurel for your good wishes but it is not NAG I am on but glucosamine sulphate. I was interested to hear from one of our nameless friends that her VV consultant has put her on a combination of GS and condroitin sulphate. I'd be interested to hear how she is going. You are quite right about being careful though. Frank was absolutely correct in saying it is made from shellfish, not shark. I don't know where I got that from. I'm sorry, I did not mean to mislead anyone. Still going well, the odd outbreak now & then but basically much better. Maybe it takes time to get more & more pain free days. Hope it lasts & works for many of you. Cheers.
CommentCArol-You had it close, some forms of CONDROITIN are derived from shark cartilage. I read that it's best to take both glucosamine sulfate and condroitin sulfate together. http://www.vitasentials.com/cosamin_ds.htm
CommentCarol Bondi - I am the nameless friend you referred to. It"s too soon to tell about the supplements my urologist put me on, as it takes 3 months to get the full effect. It is useful in chronic pelvic pain. See the web site at http://www.algonot.com/
CommentThanks Carol for your input. I guess there are probably different kinds of glucosamine. NAG must be similar to what you are taking since it stands for N-Acetyl Glucosamine. Good luck and keep us all posted! laurel
CommentThis was posted today in the Yahoo group Vulvar Disorders:http://www.ixionbiotech.com/home.htmThnk you Lynnze for pointing me there. Still waiting on a reply from DTroll.
CommentTO LAUREL: Thanks for the post about Asacol. I have followed your posts with great interest ever since you saw Dr. Davis in AZ - I flew out there and saw him as well. I read about Asacol on line and it says it's for Ulserative Colitis - have you been diagnosed with that - or is your doctor having you try it for the symptoms you've already stated that you had? What was your doc's reason for having you try this med? I'd like to be able to explain to my doc . . . Thanks again for sharing your information!
CommentFor Laurel - Thanks for posting the info! When you say your symptoms are "in check" do you mean that you feel just fine now? Are you currently doing anything else along the the new medicine you are taking? Thanks!
CommentHey guys! Ya'll are so amazing. Things aren't going so well, I guess to say the least I found out the hard way that my bf didn't exactly care about me as much as I did for him. So needless to say, I start all over again...how frustrating. I guess it just seems so much more frustrating for me to be a single female with this problem. Who would want to deal with this crap? Guys really don't understand, hell, I don't understand. I have done my research, but as you all know, there is rarely an answer. Like others, I fight with the question of 'why me?' How imbarassing, telling a man about this!I really just wanted to thank CANDI AND FRANK. You both gave me alot to think about. Candi, you sound so much like me. Trust me, if one of my friends was going through the same thing, I would be telling her to leave the self-centered jerk too. And Frank, where do I start. You are so amazing and I wish there were more guys out there like you. Your wife is so lucky to have a man like you. You care so much about this, it just is so shocking. You really gave me a different perspective. Though we did break up, I realize that most guys have no clue what to compare this sort of pain with, so I may need to explain it a little better, and instead of bitting my lip and crying, tell them when its that bad. Sounds like common sence, right. I am just the sort of person who doesn't admit when I can't do something or handle something. So oddly enough, I would rather be in excrutiating pain than tell someone to stop, that way I am proving to myself and whoever gave me this that I can handle it!Anyway, just wanted to say thanks for listening and Frank, please tell your wife she is a seriously blessed woman to have you!
CommentFor Melinda and anonymous: I havent been diagnosed with ulcerative colitis, as I chickened out before the colonscopy, but Im pretty sure I have it. But Dr Davis said when he did the rectal, he saw proctitis and he looked up as far as he could. Since I do feel mine further up, Im sure over the years that it has turned into the colitis which is what happen when left untreated. If you look up diseases of the intestine, youll see that antibiotics are often to blame. Even neurontin can cause it! In any case, Im sure thats what I started with 12 years ago after the flagyll, and my vaginal pain was such a huge symptom, I didnt notice the rectum hurting. I cant believe it took me so long to figure that one out. Perhaps I could have kept it from spreading. I think that a lot of us have a form of it, cause when my intestine inflames it pushes on the vaginal wall and causes intense burning internally and the vulva. Maybe no one is making the connection. I am vigilant about listening to my body now and trying to make connections, and now I am keeping a journal. Its helping. Anyway, if I had to theorize (and thats all I can do), Id say that by taking the Asacol, perhaps it will keep the vulvodynia from flaring up as well. I did have a slight flare up this morning, but I did take my meds and it went away by afternoon. If Im in a flare up, I just eat in small amounts or maybe one meal, and eventually it will pass. You have to give your system enough time to excrete and recover, or its kind of like a cut that you might pick at and as long as you continue to aggravate it, how can it heal? For me, its that way with food. People with any kind of intestinal ailment must eat carefully, small bites,and chew very well. My vulvodynia is always food related, so for me personally i think the proctitis and v.v. are connected, my insides destroyed by years of antibiotic use. I may be wrong, but I never even knew I had rawness in the colon, not just the vulva. Dr Davis really did me a favor by finding it. I think you should just say, listen, Im at the end of my rope, can I try this medication? I called Dr Davis and even though he wasnt familiar with it, he was willing to give it a go. Dont let these doctors keep you from trying new things. It may not work, but at least you tried. Good luck and best wishes, laurel
CommentTo Jen: I'm happy you got some comfort from my words and the support of others here. Sounds like you are going in the right direction. Hey don't pin any medals on me just yet, yes I try to be compassionate and display concern and understanding to my wife but there is a lot more to me. We all do a balancing act between the good and the bad in us and I'm no different. I still have my moments of being a selfish, self centered louse. I have a really strong sex drive and it is sometimes very overwhelming. No I don't cheat but I do get upset at the whole thing, the unfairness. I miss the crazy passion, the sex without worry of causing hurt. Thanks for the compliments but save them for the good guy out there who you will someday find. The guy who will love you for who you are, not who he expects you to be. My best to all.
CommentLaurel-I'm not farmiliar with colitis. How do you know if you have that? I DO know that I was on Flagyl off and on for 8 months prior to this horrible condition. I hope that tonight I kept someone else from suffering like us. My baby brother (22) just recently broke up with his girlfriend of a year and I spoke with her tonight after my mom called me and said the poor thing called her and asked advise about bacterial vaginosis. Hse has had it off and on for years. I immediately called her and talked to her about antibiotics and what I believe it has done to me and to others on here. I gave her the website and told her if she ever has a question and I can't be reached, to go here and ask. When I was explaining to her what antibiotics can do to the intestines and that the good bacteria neutralizes oxalates in our system and the antibiotics deplete the good bacteria she said, oh I read something on the handout that came with my Metrogel or clindamycin that said something about oxalates. She then said that if it is known that antibiotics can cause problems like this then why do doctors prescribe them. Well, what else is there? I introduced her to the health food store and all of it's natural wonders that she can take to help keep infections at bay so she doesn't end up like us. Jen-You can be single or married and men will still react the same. I don't know what would be worse, losing a BF over this or a husband. Husbands are the ones that take vows, in sickness and in health. there have been married women on here that have lost their partners as well. I have read past guestbooks and there is always a loss on every one. It always makes me cry. I am so sorry for your heart being hurt sweetie. But there IS someone out there for you. And WHEN someone finds a cure for us then you can show off your new man to your old man and show him what he is missing!And for those that believe their pain is oxalate related I can't remember if I posted this site or not, its from the Vulvar Disorders group on Yahoo:http://www.ixionbiotech.com/home.htm
CommentHey Everyone - someone alredy mentioned it - but if you haven't done it - go to Salon.com and accept the free day pass so you can read the full article on vulvodynia that is there. It's pretty good - we whould all e-mail them and thank them. It was posted on Sept 4th.
CommentThanks to the person that posted regarding the article on vvs in www.salon.com It IS a fantastic article because it managed to address so many different aspects of the issue. I've sent an email to the author and the editor of the site itself and urge everyone else to do the same. One of the biggest problems we all face is the general lack of knowledge about our illness. So, take part in changing that - get involved and get heard. You can email the author at: bg@breakupgirl.net and the site editor from the site itself. This is a direct link to the article - I hope it works: http://www.salon.com/mwt/feature/2003/09/04/vulvodynia/index.html
CommentCANDI--What exactly did the girlfriend mean when she said she read something about Metrogel or Clindamycin and something about oxalates? Is there some specific relation that it stated? I just want to know if you had more info about some relation we may not know of. Thanks
CommentKimB- She didn't have the handout with her, but I will ask her the next time we talk. I was curious about that too. I was on all of those medications during an 8 month period and I never read anything like that on my info sheets.
CommentI got this reply from Lynn Harris, writer of the article "Trouble Down There" that appeared on www.salon.com....."Shannon, thank YOU. Corny as it sounds, it always makes a huge difference for us writers to know that our stuff isn't just floating pointlessly in the ether! And I'm glad you've managed to keep things at least under control (and the right guy to do so with!).Best regards, Lynn"..... I believe that every bit of publicity we get moves us one step closer to getting some answers.
CommentHello, I am doing better with my interstitial cystitis and my burning, but now I have more itching. This has been going on for about three months now. I have been using tea tree oil for about three or four days now, but I still have the itching. Can anyone tell me how to use the tea tree oil accurately, and what success they have had with it? Also, how long such I wait to accept good results? I am also taking acidophilus, but I have read that some have problems with itching do to too much acidophilus. So, how much is the rigth amount? And any other suggests would be appreciated. I am trying to get pregnant, and this itching is making it almost impossible, so please, please help me. I am so tired and depressed at times and just need your help. You are all in my prayers. Thank you so much, Sharon
CommentI have had vulvadynia for a long time and like many other's it seemed to have started one year after a series of 3 bladder infections , after the last bladder infection I took 2 weeks of antibiotics and had the worst yeast infection ever.Right after that I couldn't use soap in the vulva area and before that I never had any problems . The other thing I noticed was that my skin overall was way more sensitive and the skin on my face was more red and broken out. I never had any yeast or bladder infections after that but I started to notice a slight itching once in a while and a slight discomfort with intercourse and like I said my skin was just way more sensitive overall. I did see an acupuncurist who cured me for a while and the interesting thing was that I never told him about my vulva problem, he was just treating me for my skin on my face but when my redness on my skin cleared and was less sensitive the vulvadynia also went away .Of course at that time I didn't know that this was vulvadynia so when all my symptoms eventually returned I always assumed that it was all tied in together with my skin problems overall .Eventually my symptoms came back and I could'nt locate that herbalist/acupuncurist but some years later I found one who did cure me once again and my skin on my face also once again was less sensitive and not red.Of course this didn't last forever and the herbalist that I went to lost the formula he used for me at that time and some of the other things he gave me after that made my vulvadynia worse(bad luck or what) But my chinese doctor did tell me that he treated me for kidney yin deficiency and I know that translates into something to do with adrenal function and female hormones.The last several years when I was under alot of stress my slight itching turning into a real unbearable burning pain to the point of not wanting to get out of bed and I also couldn't excercise because my bladder would get really weak. I think that the stress definetly made my symptoms worse and also some of herbs I took for detoxing made me worse and at the time I thought that it was worse because it was detoxing but now I feel it was depleating the yin or water energy in my body. I have to say that I have tried out of desperation with this problem all kinds of diets , and fasts and colon cleanses and I think I was on the Body Ecology Diet for 7 years and I have taken all kinds of supplements and yet my symptoms got progressivly worse and worse but these last 2 months I finally tried something that has given me hope that I can feel normal again and most of relief from that awful burning pain.I bought some chinese herb pills called Zhi Bai Di Huang Wan they are for building up the kidney yin function .In China they use it alot for menopause and hotflashes but it has no hormonal properties so anyone can take it even men can take, it just helps build up the yin function of the body.From what I have read yin is the water in the body and yang is the fire and when we deplete the yin or water the body starts to get all kinds of inflammations because nothing is there to control the fire. Also the yin energy of the body seems to get depleted from stress like over work or emotional stress. Ive also noticed since taking this that before when I excersiced I would get really red and now my face doesn't get as red and irritated by my own sweat like it used to.I also noticed that sometimes it felt like my intestines would get sore once in a while and that went away, I think I had irritable bowel.Ive been taking these pills for 2 months now and I noticed that after a few days my pretty much constant burning subsided and then only came back for 2 days after my period. This whole second month I felt great and now I have just finished my period yesterday and I was worried that the pain would start but so far I haven't felt anything really.I talked to some students that are studying chinese herbs and they told me to stick with it because it takes a long time to build back up this kidney yin energy and I think that's why before when I was treated by those two acupuncurists and cured it only lasted for a short time because I didn't stick with taking the herbs long enough.I also discussed the fact that all this started after those bladder infections and they said that when women get low in the that yin energy they have more chance of getting infections down there because yin also translates as the mucus that lines the vagina and not only keeps in moist but also protects it from invasion from bacteria.Well I really hope this helps someone else also because 2 months ago I really felt like shit and now I feel so much better. I also didn't mention that I was diagnosed last year with chronic fatique and now I excersise every other day it seems to have given me my energy back also.These herbs you can get at any chinese store but I buy mine at a health food store , they sell the Plum Flower brand which I like because of some concerns out there in recent years about contaminants in the herbal pills from China. Good luck and praying for you all and I would really like to hear if anyone else gets the relief that I have.bye
CommentHas anyone ever had skin irritations generally in addition to the vulvadynia.
CommentI have had vulvadynia for a long time and like many other's it seemed to have started one year after a series of 3 bladder infections , after the last bladder infection I took 2 weeks of antibiotics and had the worst yeast infection ever.Right after that I couldn't use soap in the vulva area and before that I never had any problems . The other thing I noticed was that my skin overall was way more sensitive and the skin on my face was more red and broken out. I never had any yeast or bladder infections after that but I started to notice a slight itching once in a while and a slight discomfort with intercourse and like I said my skin was just way more sensitive overall. I did see an acupuncurist who cured me for a while and the interesting thing was that I never told him about my vulva problem, he was just treating me for my skin on my face but when my redness on my skin cleared and was less sensitive the vulvadynia also went away .Of course at that time I didn't know that this was vulvadynia so when all my symptoms eventually returned I always assumed that it was all tied in together with my skin problems overall .Eventually my symptoms came back and I could'nt locate that herbalist/acupuncurist but some years later I found one who did cure me once again and my skin on my face also once again was less sensitive and not red.Of course this didn't last forever and the herbalist that I went to lost the formula he used for me at that time and some of the other things he gave me after that made my vulvadynia worse(bad luck or what) But my chinese doctor did tell me that he treated me for kidney yin deficiency and I know that translates into something to do with adrenal function and female hormones.The last several years when I was under alot of stress my slight itching turning into a real unbearable burning pain to the point of not wanting to get out of bed and I also couldn't excercise because my bladder would get really weak. I think that the stress definetly made my symptoms worse and also some of herbs I took for detoxing made me worse and at the time I thought that it was worse because it was detoxing but now I feel it was depleating the yin or water energy in my body. I have to say that I have tried out of desperation with this problem all kinds of diets , and fasts and colon cleanses and I think I was on the Body Ecology Diet for 7 years and I have taken all kinds of supplements and yet my symptoms got progressivly worse and worse but these last 2 months I finally tried something that has given me hope that I can feel normal again and most of relief from that awful burning pain.I bought some chinese herb pills called Zhi Bai Di Huang Wan they are for building up the kidney yin function .In China they use it alot for menopause and hotflashes but it has no hormonal properties so anyone can take it even men can take, it just helps build up the yin function of the body.From what I have read yin is the water in the body and yang is the fire and when we deplete the yin or water the body starts to get all kinds of inflammations because nothing is there to control the fire. Also the yin energy of the body seems to get depleted from stress like over work or emotional stress. Ive also noticed since taking this that before when I excersiced I would get really red and now my face doesn't get as red and irritated by my own sweat like it used to.I also noticed that sometimes it felt like my intestines would get sore once in a while and that went away, I think I had irritable bowel.Ive been taking these pills for 2 months now and I noticed that after a few days my pretty much constant burning subsided and then only came back for 2 days after my period. This whole second month I felt great and now I have just finished my period yesterday and I was worried that the pain would start but so far I haven't felt anything really.I talked to some students that are studying chinese herbs and they told me to stick with it because it takes a long time to build back up this kidney yin energy and I think that's why before when I was treated by those two acupuncurists and cured it only lasted for a short time because I didn't stick with taking the herbs long enough.I also discussed the fact that all this started after those bladder infections and they said that when women get low in the that yin energy they have more chance of getting infections down there because yin also translates as the mucus that lines the vagina and not only keeps in moist but also protects it from invasion from bacteria.Well I really hope this helps someone else also because 2 months ago I really felt like shit and now I feel so much better. I also didn't mention that I was diagnosed last year with chronic fatique and now I excersise every other day it seems to have given me my energy back also.These herbs you can get at any chinese store but I buy mine at a health food store , they sell the Plum Flower brand which I like because of some concerns out there in recent years about contaminants in the herbal pills from China. Good luck and praying for you all and I would really like to hear if anyone else gets the relief that I have.bye
CommentSomeone recently asked about Tea Tree Oil. I have posted this before, but wanted to state it again. The ONLY thing that has ever provided any relief for me is Tea Tree Oil suppositories by a company called Thursday Plantation. I get them at my local health food store, but they do have a website. You can find it using Google. I buy two boxes at a time (12 suppositories). I use one each vaginally and anally at bedtime for 3 days, then I break a single one in half and use it the same way for the next 6 days. It is not a cure - but it gives me some serious relief and a well needed break from all the irritation. As an aside, I would love to know if the relief comes from the Tea Tree Oil itself, or the vegetable oil base that the suppositories are made from. After reading Laurel's above post, I just spoke with my doc regarding Asacol - she is looking into it for me - I'll post with any news. Best to all.
CommentHas anyone had success with vagina pain and biofeedback? Does this really help stop the pain from the muscles and nerves on the inside of vaginal wall? HELPPPPPPPPPP!!!!
CommentAnna,can you tell me at what dose and frequency you take your herbs? thanks
CommentReebi, I take the Plum Flower Brand and there are 200 small pills and the dose on the bottle is 8 pills three times a day between meals but I have upped the dose on occasion to 10 pills three times a day and sometimes four.It depends on how I feel and I was told by an herbalist that that was perfectly safe to do if I felt like I needed it. I think I said before that I was told by the herbalist that you have to take these herbs for a while to get real improvement but I noticed a difference in a couple days.well hope that's helps. bye.
CommentI forgot to say one more thing about the herbs(zhi bai di huang wan) that have helped my vulvadynia.I tried three different brands and I like the plum flower best but everyone is different, the only thing I would say is don't get it from the chinese stores in china towns because I bought some there and it had the unmistakable taste of an herb called dong qui and this formula is not sappose to have that herb in it. So I think when you buy these herbs from chinese stores you don't always know what your really getting.
CommentDOES ANYONE FEEL LIKE THEIR VAGINA ISNT CLEANING ITSELF OUT PROPERLY? I HAD A BACTERIAL INFECTION A MONTH AGO, I USED A CREAM CALLED CLEOCIN FOR A WEEK. ITS NOW BEEN TWO WEEKS SINCE I USED THAT CREAM AND THE CREAM IS STILL INSIDE OF ME!! DOES ANYONE HAVE THIS PROBLEM OR KNOW WHAT I SHOULD DO?
CommentTara, that isn't the medication. You probably have a yeast infection or some other discharge.
Commenti honestly know its the cream coming out of me,i feel like my vagina isnt cleaning itself out, its been over a week and its still inside of me, i even compared it to some of the cream i had left in the tube.
CommentHello fellow suffers. I have suffered with this problem for the past four years (but I was diagnosed with myofascial disorder of the pelvic floor-- I assume that it same since all of the symtoms sound the same) and also have done everything to try and help it and finally found a solution that has been working for me. I went to a yeast specialist (did not have yeast and was tested with all of the tests coming out really low), and finally ended up at a fantastic urogynocologist, who told me that she could give me that Elivil but that it would do nothing (am still glad to this day that I did not take it). I did the internal PT, but it seemd to get better, and then get worse. We decided that it might be coming from my back, so I found this absolutely FANTASITC manual therapist (Note, this is NOT a chiropractor) who preformed deep muscle massage, said that the vertabrate in my back were cutting off blood to the pelvic muscle, and the problem started to get MUCH better. We then added acupuncture to take care of the itch (although I do use the steriod creams as an asprin, but I am now weary after reading this website). It seems successful for the itch, (the acupunture) along with an exercise rountine in which I get to go running and everything that I could not do before! It has gotten so good that I can now take Aleve when I have a flare up or when I go on an airplane since it will act up as a reaction to the change in pressure over time. As far as intercourse is concerned, I have not had the chance to really experience if I can do this regularly (has nothing to do with this condition). According to my physical therapist (who is trained as a Russian MD and is getting his MD here), it will definitely flare at that time, but we will continue to work on it. According to him, I will have to "do it" and he will have to undo the mechanisms that it sets off, since it will certainly produce a flair up. My sister started to develop symptoms but she went right away to my PT, and she is now absolutely fine. He said that it was the same place in her lower back. He is in the Chicago area, and I will give his name and number for those of you who are interested. I do no know what I would without him. I am mostly pain free (well, at least 90%).I am not, however, all the way cured. WENDY-- Do you think that I should try the diet? I am one of those who HAS to have a drink when it is really bad (and it helps) and I also drink coffee all the time and do not notice that it makes a difference. I did the anti-yeast diet way at the beginning and it not help at all, and I did the cranberry and no tomato diet at one point and did not notice any results. What do you think? If you do think that I should do the diet, where can I find all of the rules of it?I am SOOO glad that I found this website!!! I would have loved to have know about it four years ago. Please let me know if there are any questions that you all want to ask me about this, since, I too, have been through my share of doctors..
CommentRachael-Wendy moved not long ago and hasn't been online. You can get some info about the diet from the VPF, there are some sites that come up if you just type in low oxalate diet in your search bar. But the VPF offers a Low Oxalate Cookbook and the second cookbook is coming out soon as well. You can become a member of the VPF for $40 a year and you get new info all the time. They are still testing foods and continue to add more foods into our diet as they are tested. Like any diet, it's hard, but I do know when I eat something bad, my pain becomes worse. Coffee is a big no, no. There is a coffee that is ok, for those of us on the diet however. I'll look in a bit in my cookbook and post it. I am not a coffee drinker so I don't know right off hand what brand it is. Also alcohol is a big no, no as well. I have gotten used to drinking only water. Here is a link to a site that has diagrams of what oxalate crystals look like in our urine. It definately helped me stick to the diet much better this week! Crystals are for necklaces and decoration, not for my urine! hehehe
Commentdoes anyone know what to do if ur vagina isnt cleaning itself out properly?
CommentCandi,Thanks for the info. So you really think that this will help me? I have a few questions for you. Are you affected by drinking alcohol (like does it get worse)? I read a study that I found on this website and it indicated that there are 2 groups of women who are mostly pain free---those that do the diet, and those that do the manual therapy/acupunture route. Do you think that there are just different causes for this problem? Also, I know from reading this that you have really struggled with this (haven't we all) and I really suggest the manual therapy (remember this is of your lower back, not touching the muscles that are irritated. According to my PT this is important because those muscles will not react well to being put back into place, but you have to increase blood flow for them to heal themselves). If you would like his name and number just let me know and I will give it to you. He is in Chicago.
CommentRachael-There are definately different causes of this. Some women have chronic yeast adn that can cause vulvar pain, some I think have problems with hormones and then there are those who have changed their diets and are just fine. I post on yahoos vulvardisorders group and there is a woman who suffered for 13 years and she was a MESS! Her vulva as she says looked like raw meat. She didnt know about compounding estrogen creams so she used Estrace and had a reaction to it like I did but she used it every 3-4 days for a few months then upped the usage and so on, she is pain free and has been for 4 years, she still uses the estrace and also a testosterone cream 2 times a week and that has worked for her. Estradiol, the main ingredient in Estrace, is proven to thicken and repair the skin. She did MUCH studying on it. It may not be right for everyone though. I don't drink. I havent drank since New Years Eve almost 3 years ago, so I don't know if it would negatively affect me, but I have read that it does cause irritation, just like soda is on the low list on the diet yet it causes iritation. I ate so many tomatoes and that's been the hardest part for me, everything I ate was tomato based. I HAVE noticed since being back on my BC pills that I have had some change for the positive. Some women though stopped their BC's and got 100% better. It's trial and error. I was on Ortho Novum 777 from Feb-June of this year and had the best few months of this whole ordeal. I wore jeans a few hours a day and had sex, not 100% pain free, but it was definately not awful, at least every other day. Then I read the thing about the BC's and quit them yet again and I got a yeast infection around that time too and then had a reaction to the Gynelotrimin and then tried Estrace and had a bad reaction adn then went swimming adn had a bad reaction. I'm recovering from all of that. The past 2 weeks I had the worst flare up ever just before my period and it has subsided and I can walk with out wanting to scream for th epast 2 days. I am working with a pharmacist about a compound for E cream mixed with testosterone (just a TINY bit added). I am totally against creams etc. anymore, but our bodies produce estrogen so I can't be overly critical about it. Just about the base it is mixed with. I am presently almost finished with an antibiotic as well, for a suspected bladder infection, but my bladder is still bothering me. I really wanted to cry everytime I take the antibiotic, but I can't let my bladder go adn I don't know what else to do for that. I take 1 per day and have 2 left. I want nothing to do with things like that anymore. The VPF offers a test for $350 to tell you if you have alot of oxalate in your system and when your peaks are. I will take the test by the end of the year. My med bills are outrageous, with insurance, so I need to take care of that before I take another test. You then become a part of the Pain Project and they work with you on what supplements to take and when to take the calcium citrate adn they keep you updated on new trials and keep up to date on your progress etc. I think if you have had every other test and found nothing so far, like me, then the oxalates may be your problem. It can take anywhere from 4 months to over a year to notice the program working. It is a slow process. The body has to heal itself. I am taking calcium citrate with magnesium and oxabsorb everyday. I also am on Ortho Tri cyclen, I wasnt excited about taking chemicals again, but after off adn on use, I do notice that I have more ok days when I am on them. I cant say that hormones are 100% of my problem, I forgot to take them right at the same time I finished a long use of Flagyl and antibiotics can kil the good bacteria in your system and good bacteria actually neutralizes oxalates adn when there is nothing to neutralize them, then they get into the blood stream and into the connective tissues. VVS from an over abundance of oxalates is in Dr. Solomons opinion is a connective tissue disorder. Thats why they say to try N-AG or glucosamine sulfate. I am not so good on remembering to take the glucosamine. I feel like a pill factory. Well, Ive taken up a ton of room. E-mail me anytime you want. The address is above. C~
CommentTo Candi: Just wanted to compliment you on getting fair and balanced informatioin out there. Even though you and others have had success with Estrace you added " it's not for everyone". I think that's great because you did not make absolute claims of miracle cures. My wife for one had used estrace along with other things such as testosterone cream to strengthen and repair thinning tissue. She did not get any relief from that use, probably because low estrogen was not the problem. I'm still annoyed that no test will reveal the reason for the thinning and tearing. Biopsy does exclude things like lichens and estrogen imbalance. Hey keep up the good work and my best to all.
CommentFrank-I personally have not had success with estrogen creams. YET. I cant use Estrace, it irritates more. I am taking it in a different direction and am going to find the right compound for me before applying ANYTHING else. Maybe it's possible that your wife had a negative reaction to something in the creams she was trying? I am fortunate enough to have found a compounding pharmacist who was beginning to study our disorder even before I contacted him and will be in contact with him a few times to discuss things before i settle on a compound. Estrogen is natural, but its the ingredients it is mixed with that arent. And I am not into adding pain upon myself. I did that long enough. I am surprised from all I have read and been told by others that it didn't help with your wifes tearing at least. How long did she use it before discontinuing? It takes a long time to repair the skin and should be used as an ongoing thing, not discontinued once the symptoms go away. It will be the last topical I use on my vulva. I will give it a year, as the skin needs to be repaired and it is slow to heal, and if I havent noticed a great deal of progress then I will discontinue its use. I am very big on not using any chemical produce again because of my experiences, but we all have estrogen in our bodies and I will just be cautious on what I will allow it to be mixed with. Some have had success having estradiol mixed in a base of vitamin E and some have had it mixed in a base of olive oil. The skin needs to be repaired on the inside as well, thats why I am doing the diet as well. As Wendy says, negative in, negative out, positive in, positive out. And I think that goes for ANY reason for the vulvar pain whether it be hormonal, yeast or oxalate related. I think the majority of us who post here live in the US and Americans are the most unhealthy nation of people out there. It wouldnt hurt most of us to change our eating habits. I have been feeling around a 6-7 in the pain level the past 2 days and last week I was at a 10+++. I have stuck to what I learned from Wendy this week more so that the past few weeks because the pain was so bad I didnt want to make it worse. I know alot of people dont agree with muscle testing, but thats perfectly ok. I do and will stick to it. I am too afraid to test myself on the BC pills, hehehe, mainly cause I have tended to notice a lessening in my pain when I am feeding my body that extra boost of estrogen. I take Ortho Tri Cyclen, it is one that is a higher estrogen and lower progestin. I think my body got so used to the hormones over the past 7 years tht it doesnt know what to do when I take them away. Now if I could just figure out whats wrong with my bladder...
CommentTo Candi: My wife used Estrace along with Locoid and a testosterone cream for about three months. Then she saw a endocrinologist who tested her blood and also took a swab of the vaginal cells. Estrogen levels tested back normal. My guess is that for some women suffering from the thinning skin and tearing estrogen is not the problem. Question is, what is the problem? I'm also concerned that in an effort to get relief some of the women here will over medicate with estrace and other hormones and steroids. I know if a man takes testosterone and his levels are normal to begin with, his testicles will atrophy because the body doesn't need them to produce that hormone. Do you know if a similar thing can happen to women taking estrogen? Do the ovaries in a healthy woman who is having somewhat regular periods and normal estrogen levels atrophy if she is taking estrogen? I get so frustrated with all this. The doctors don't know and keep prescribing all these meds, possibly causing other problems. My wife says she won't take anything else to treat this problem. I hate to think she is giving up but at the same time I don't blame her given the response from the medical community. I admire your perseverence and efforts. Stay strong.
CommentFrank- From what I've read a womans estrogen levels can test in the "normal" range yet there can still be a lack of estrogen to the vulvar area. Just something I read awhile back, I'm no doctor. Also using E creams topically doesn't cause much systemic absorbtion, not enough to cause a problem in the least. I don't know about the ovarian atrophy, I am not of age yet to need oral estrogen. Also 3 months was definately not enough time for the estrogen to work on the skin. It can be if the problem is minimal, but the VPF suggests 6 months before noticing a real change in most. and then after that 6 months we are to cut back the use over time until we need it only once or twice a week. I definately dont blame your wife for shying away from medications. I hve as well. They either dont work or make me worse. I take my last antibiotic for my bladder today, thank God, and it hasn't even helped. I am not so sure about the hormone tests. I know they have to do it at certain times during your cycle and some women need more estrogen to feel normal while others need less. I don't think its a one test fits all sort of test. I came across a woman on another site who was told her problem wasnt her hormones because she was too young and because she still had her period regularly. When they tested her, her estrogen was so low that she wasnt even close to the normal range. So hving a normal period means nothing. Thats what they keep telling me also, my hormones are fine becasue I have regulr cycles. Well, no I don't. Not to ME. I, not to be gross, used to bleed regularly for 4-5 days and they it would taper down. Thats how it was until a year ago when I got this, now I bleed for 1-2 days then it stops. To ME thats not "normal" from what I am used to, but since I do have a flow they tell me my hormones are fine. so who knows
CommentI am 46 years old and in 1991 I was diagnosed with pre-cervical cancer. The Gyn doctor at the V.A. hospital said it was due to HPV. I was given a complete hysterectomy in 1991 due to the pre-cervical cancer and a complete because there was a history of ovarian cancer with my mother. At the time of the hysterectomy the doctor found that both ovaries had large cyst on them. I have had laser surgery, podolyphyn treatment, surgical excision of the hpv warts and nothing seemed to work. In 1996 I was diagnosed with squamous cell carcinoma insitu of the right side of the vulva. The Gyn-oncologist at an Air Force Medical Center did laser ablation to remove the cancer. I was released from the hospital the next day and went back in 2 weeks for a follow up. When I went back I was admitted to the hospital for a month. The following day after admission I had to have a vulvectomy done on the right side because of severe infection and tearing of the vulva. In 2000 I had to have a revision of the vulvectomy due to having lost about 90lbs. In February of this year I had a yearly appointment with the V.A. GYN. I was found to have VIN III or Squamous Cell Carcinoma insitu again this time on the left vulva. From 2000 to 2003 I have been having increased pain in the vulva and of the vagina. It hurts having intercourse, urinating, wiping myself after urination. I can just be sitting at the house or work and it feels as though the left side of my vulva is getting numb or a pins and needles feeling. The left vulva actually goes numb.In July of 2003 I was diagnosed with VIN III or squamous cell carcinoma of the periclitorial left and right. 99% of the time it feels as though I am sitting on a golf ball or a ping pong ball.The GYN Oncogolist wants to wait to see if this new treatment that he is doing for the VIN will help the vulvodynia.He said it probably wouldn't. It would more than likely make it worse. I have had the treatment once that was about 3 weeks ago and he was right the pain is just worse instead of better. The new treatment is this he paints my vulva area with a chemical and then the next day he puts a projector light on me for 16 minutes and 40 seconds. Does anyone have any ideas. I can't get out and walk like I want to, to finish losing weight. I can't sit for very long because it hurts, and it also hurts during intercourse.
CommentJust wanted to let everyone know that I found out some info regarding oxalates and antibiotic use. As many of us know antibiotics seem to be a huge trigger for our pain. I was confused as to why alot of us became oxalate sensative, I didn't think oxalates were my problem b/c I never thought that had anything to do w/my symptoms. I thought the majority was yeast, which I still think was alot of the problem(but that's also antibiotic related). When I was searching for info on oxalates I came across some very interesting info. There is a bacteria called oxalobacter formigenes that, research says, our body gets sometime between the ages of 9 months and 8 years old. Researchers do not know how we This bacterias function is to aid in the digestion of oxalates. Chronic and/or strong antibiotic use kills this bacteria, and the body cannot reproduce it. The funny thing is, almost all the info I found on this had to do w/kidney stones. They are saying that oxalates are what form kidney stones and in studies that they have done, ecspecially on cystic fibrosis patients, all the people w/recurring kidney stones did not have the bacteria o. formigenes and this was the reason they kept getting them, b/c they didn't have the bacteria that breaks down oxalates. There are other studies on this, like the one done w/lab rats where they fed the rats a high oxalate diet but supplemented w o. formigenes and urine tests showed normal oxalate levels. This bacteria is not yet available b/c they are still doing studies. It is going to be considered a probiotic, just like lactobacillis/acidopholis which we can currently get at health food stores. I was so excited to hear that once they come up w/this bacteria for the publics use we can reestablish this bacteria in our bodies and not have to remain on the diet. There is a company called IXION that is doing studies on this right now and they mention vulvodynia along w/other oxalate related conditions such as chronic fatigue, fibromyalgia, kidney stones, etc. in which they mention using o. formigenes as the solution. Once I read all this info it all made sense, now I understand why oxalates bother so many of us, I just had no idea it had something to do with a bacteria thats supposed to be there! Keep your eyes peeled for this probiotic to be available to us. Hope I explained it okay. Be happy! :-)
CommentBy the way I forgot to mention that I also found somewhere that it said oxalates, when building up in your tissues and cells, cause nerve sensativity and connective tissue problems. This article specifically stated that. Now I understand why I am so sensative down there to touch, ecspecially the clitoris, it never used to be that way.
CommentThank you everyone for your helpful comments. I am a dentist who specializes in gums and oral conditions. I have been suffering from a vaginal condition since May 1997. It first started with unexplained blood on my underwear (not at the time of my period) and coincided with the stress receiving my mom's diagnosis of terminal cancer. I have been to countless MDs, had multiple biopsies (one doctor biopsied the WRONG area), and tried countless creams. I have had several diagnoses that turned out not to be accurate. Last spring I noticed I had mouth lesions that turned out to be oral erosive lichen planus. I also had a biopsy that the pathologists determined looked like erosive lichen planus. I have in my vagina (and cervix according to my OB/GYN) red areas with peeling epithelium. As a result I get bleeding. I have seen "desquamating" tissue at the entroitus (vaginal opening) which, to me, looked like erosive lichen planus. It hurts so much with urination and intercourse. I truly believe that herpes, a food allergy, soap allergy, or vulvodynia is not the culprit. I have also been told by my doctor that yeast gets superimposed on the sloughing epithelium and proliferates. That explains the intense itching I get on occasion and the relief I feel when I take oral diflucan or use antifungal vaginal creams. I just finished a 2 week stint with oral prednisone, and I am hoping for the best. I have been suffering for so long, but I do feel confident that my condition is due to erosive lichen planus, a skin condition that doctors believe may be autoimmune. I have read a lot of thoughts in these books, and what I feel other women are describing is what I am also suffering from. Any thoughts? Has anyone ever heard of this skin disease from their doctor? Please feel free to e-mail me. Thank you!
CommentTo Lisa: I don't know if this will be of any use but here goes. I have a friend who has suffered with uclerative colitis for several years. The bleeding and inflamation was so bad the doctors were going to remove his colon. He was taking high doses of prednesone to reduce inflamation and this was no longer working either. Finally one of the doctors suggested trying a very serious medication. I don't know the name of it but it is given to transplant patients to prevent regection by doing something to the immune system. He has his blood checked weekly to monitor possible liver damage. I believe there are more serious side effects. I don't know how the doctors would decide your quality of life versus the risks involved. I wish more was done to relieve your pain. My best to you.
Commenti need ur help! i dont have insurance so im guna ask u guys if u know what this is. ON the outside of my vagina, i keep getting irriated,burning and redness...it comes and goes,,, does anyone know what this could be?
CommentKim,What an interesting study! Where did you find it? Can you give us the link? Also, how can some of us get tested for oxalates? Is it something that our doctors can test for or it is more specialized than that? The whole connective tissue thing makes sense because that is the PT that I do, he says that he is restoring the connective tissue, from my back, that he feels has been damaged. Interesting if this is the reason. I am on day one of the diet and am already annoyed!
CommentHi Candi- how are you? Just wanted to let you know of my progress. I've been on the low yeast diet for 2 months now. I started off yeast free but it's so dang hard! Anyway, I definitely see an improvement. I stay away from sugar foods, milk products, soy, caffeine, chocolate, preservatives and artificial colors and flavors. also I'm taking GSE, NAG, chamomile pill and a supplement called fibroplex which has magnesium and B vitamins. I still have some symptoms but it is less severe and the other symptoms like proctitis are gone. I have decided to keep this diet for a year because I believe it was years of poor eating on a sensitive system that caused it and it's going to take time and patience to reverse it.
CommentGabby,How could we possibly know what you have? You haven't given a medical history or a sexual history, not to mention the fact that we can't see you and none of us are doctors. Get yourself to a public E.R. or a planned parenthood. They'll see you for free, or close to it.
CommentRachel--Here are some links you can check out or another way is to do a search(I used Google) and type in oxalobacter formigenes+antibiotics or something like that. Some that I found were www.biospace.com/ccis/news_company.cfm?CompanyID=3421&SR=21 under Ixion Announce An Agreement In Principle with Q-Med AB or www.cpet.utl.edu/sciexpl/med029.htm or www.knology.net/~kwpoore/kidneystones/stonesmain.htm or www.pubmedcenter.nih.gov/articlerender.fcgi?artid=124017 or www.ixion-biotech.com/home.htm?http://www.ixion-biotech.com/kstones.htm and click on oxalate-related under target diseases
CommentI've had pelvic floor dysfunction with pudendal nerve involvement (burning in and around the urethra) in varying degrees for at least 10 yrs. I have finally found a good Urogynecologist, Dr. Karen Noblett, at the University of California at Irvine Medical Center, Women's Health Center. She has recently recruited a great Physycial Therapist, Julie Sarton, DPT, who specializes in treatment of this type of problem.From Julie's perspective, it is essential that all women with these issues receive a full musculoskeletal assessment as there can be multiple contributing factors that have led to the problem. She does both internal and external physical therapy work. She uses internal electronic stimulation, but that is only part of the treatment. My pelvic floor muscles are tighter on my left side than my right. I have a pseudo right leg shortening, and my pelvis is a little out of alignment. I have a lordosis, and my sacrum lacks mobility. I have an inflammatory component (I sometimes get itching). I started taking Elavil (to try and break the pain reaction cycle) and Atarax (antihistamine to control the inflammatory component). Today I had a bad reaction to Emla, an anisthetic cream we started trying to also help break the pain reaction cycle. It may take a long time before I see dramatic improvement, although at least so far my musculoskeletal misalignments are improving. And at least I have found someone who understands the problem and knows her stuff.While I commend all professionals who recognize and treat this type of problem I caution you, Dr. Glazer, that your approach to treatment seems very limited. I don't fully relax my pelvic floor after a Kegel contraction, but that doesn't explain why my muscles are tighter on one side than the other. Your treatment won't help me increase my sacral mobility. The pudendal nerve arises from parts of the sacrum. If my nerve is partially trapped, your approach won't free it. You won't treat the inflammatory component, if it exists, with what you are doing. In fact, internal stim (if that is what you are doing) may make the itching worse (as it sometimes does with me).Again I would commend you and thank you for taking the time and making the effort to try to help us and educate others!But I would refer you, and others, to the Interstitial Cystitis Network listing of Physical Therapists at:www.ic-network.com/md/ptlistings.htmlI'm an occupational therapist, and based on my personal and professional experiences it is the underlying issues that must be identified and treated in any situation. I don't think you are identifying and treating ALL of the underlying issues.Thanks for listening!
CommentDoes anyone know any good specialists or doctors on Long Island that focus on vulvodynia? I have to find a doctor!
Commenti have two question that i hope someone will answer for me. First one is, i get yeast infection alot, ive been taking large doses of acidopolious and it was helping for a couple of months, now my body get used to the acidopolius and the yeast infections are coming back, so what should i do?My second question is....did anyone use or hear of boric acid capsules that you insert in the vagina? and does it help and is it worth it? thanks
Commenti have two question that i hope someone will answer for me. First one is, i get yeast infection alot, ive been taking large doses of acidopolious and it was helping for a couple of months, now my body get used to the acidopolius and the yeast infections are coming back, so what should i do?My second question is....did anyone use or hear of boric acid capsules that you insert in the vagina? and does it help and is it worth it? thanks
CommentTo Thp: You can overdo even a good thing like acidophilus. Boric acid capsules put together by a compounding pharmacy and inserted twice a day will help to make the vagina acidic and repress the overgrowth of yeast. Problem is, why is the yeast overgrowing in the first place? Check your diet for excess starch and sugars which fuel yeast. Be aware of your clothing, do not wear tight fitting synthetics, allow your self to breathe. Go to the library or a book store like barnes and nobles and read up on anti yeast diets. A combination of things will help to combat yeast infections. Lastly if you are in a sexual relationship have your partner wear a condom for a few weeks to see if it helps prevent infection.
CommentTo Frank B.: I have a suggestion for your wife, you don't have to try it, but here it is. Try using povidone iodine prep solution on the tear. You can get it in a medical supply store. It is used in all hospitals to prep the skin before surgery or any invasive procedure. It kills everything, bacteria, viruses and even yeast. I was tearing just above my urethra and I applied some of this solution and it went away and never came back. I believe I was tearing because of the HPV virus. It won't work to kill the virus on intact skin. The solution has to gain access into the skin to kill the virus. It is used in many gynecological procedures so it is totally safe for mucous membranes (except the mouth, it is poisonous if taken internally). You can try it if you want.
CommentThanks for the suggestion. I know what you are talking about, I have been painted up with that stuff during surgery. My wife won't try it and I won't suggest it, no offense. I really don't think it would help because her skin and labia has changed somehow. This is so more complicated than a simple wound that doesn't heal properly. Something caused the skin to thin out and tear in the first place. We need research to find out why and correct it. I appreciate your thoughtfulness but at this point she no longer puts any creams, medicines, soaps or anything else on that area.
CommentTo Frank. B, I was reading what you wrote about your wife and I think I can relate when I went to my doctor I always try to explain that the skin down there is just more thin and sensitive to everything and things like oil and creams really do nothing.I wrote an e-mail earlier about my positive reactions to herbal Chinese medicine. Before when I was treated I felt like my skin overall became less sensitive.My Chinese doctor explained that when the body is low in yin energy that the skin gets thin and easily irritated by everything.I don't know if you understand the concept of yin and yang but one time someone explained it to me its like when you have an electrical wire and the yang is the electricity and the yin is the wire or the buffer that contains the yang energy and if the yin energy gets too low then the fire or yang energy is not contained and all sorts of inflammitory symptoms start to manifest.Its the same reason why when women go through menopause and there estrogen goes down (estrogen is a yin hormone) they start to get hotflashes and dry thin skin.Im very far away from menopause but my doctor when he said that I had weak kidney yin function he meant the certain aspects of the adrenal hormones.Did you know that even though most of the estrogen in a women comes from the ovaries that 20% still come from the adrenal glands not to mention other anti-inflammtory hormones.So now I have noticed that if I take the herbs for building and stregthening the yin of the kidneys/adrenals my sensitvites go down considerably.well I don't know if this helps you are not just thought I would put my own imput. take care, Marilyn
CommentCan someone please suggest a good specialist on long islandpreffrebly nassau county, please answer i need to find a doctor
CommentTo Marilyn: I agree totally and would like to add that stress and ilness can deplete the adrenals. My wife has been under a lot of stress for years and that can take its toll. Things like parents who are ill, the death of a child and financial problems have certainly compromised her physical and emotional health. Our attitudes are very different, I change what I can and do my best to accept the things I cannot. My daughter passing away was unavoidable because of a genetic disease. The illness of aging parents is a fact of life sad but true. I choose to accept things such as these and still remain passionate . Maybe that's why I'm still hopeful and wanting to stay intimate. Although the stress and strain of life may play a part in all this I still believe the medical community is letting all of us down. Let them do research and eliminate other causes. Let them discover the reasons and treatments without experimenting on the women suffering with nothing more than guess work. Sorry to get off track, thanks for the thought.
CommentHi Frank,its really interesting what you say about your wife and stress being a component in your wifes illness.I have been under some really stressful situations in my life(who hasen't) but I realized some time ago that my health problems always got worse after these events. I also noticed over a period of time when I was working too hard and getting stressed out was when my health really took a turn for the worst.Since having vulvadynia symptoms I went from a slight once in a while itch to a full blown burning pain which made me feel like I couldn't even walk and the interesting part was that during that decline in my health I was living with an alcoholic and what made it worse is it wasen't by choice I had to live with my mom for a year because I lost everything due to illness and her boyfriend was an alcoholic.Try staying positive and getting well in that situation.Well as you heard I didn't and I was really trying so hard .I think stress definetly plays a role.Now I try to not get so emotional because I really feel that we do have a choice in life how we want to deal with things and sometimes I think we just have to except the way life is with all its happy moments as well as its sad.But knowing now what I know about my body and how I have a low tolerence stress level. I think twice about the way I deal with situations and the kinds of enviroments that I put myself in .Its nice to hear that you sound like such a supportive husband I think it is really important for your wifes healing to be in a good calm supportive enviroment.I hope she knows that she is lucky that your there for her, because alot of us with illnesses like these lose the ones we thought we could count on.I had a boyfriend of 10 years who left but now maybe because Im better and a little more aware I don't hate him I did before but now I realize it is so difficult to be with someone with these problems.I could be very irritable and unhappy to be around just because of the way I was feeling about myself but my boyfriend took it as I didn't love him and I know now he felt lonely and I didn't really talk alot about it and when your in alot of pain you just don't think about anything else and your relationship can get very distant.well take Mariyln
CommentEstrace cream thickens the mucous membranes. However, this cream contains estrogen and it needs to be prescribed by a physician and used under their direction.I "hear" a lot of intensity when I read these postings. I "see" people trying anything and everything, whether it might be right for them or not.This is not a good thing.Dr. Glazer, as a psychologist I think you need to intervene. Your role in all this could be to perhaps try to calm the panic and encourage people to just find a practitioner who can do a more thorough assessment. Each person's situation is individual and people should not just run out and try something that helped some other random person.One suggestion may be to CALL ONE OF THE PHYSICAL THERAPISTS ON THE INTERSTITIAL CYSTITIS WEB SITE(PLEASE SEE MY PREVIOUS POSTING, TOWARDS THE END). They can then refer you to a urologist or urogynecologist or gynecologist who diagnose and treat these conditions. You may or may not have pure "vulvodynia". If you have PPO insurance you may even be able to see the physical therapist directly for a consultation, but I would think they would prefer it if you saw a physician first. IF YOU DON'T LIVE NEAR ONE OF THE PHYSICAL THERAPISTS THEN ASK THEM IF THEY KNOW OF EITHER A CLOSER THERAPIST OR A CLOSER UROLOGIST, UROGYNECOLOGIST, OR GYNECOLOGIST WHO TREATS THESE TYPES OF ISSUES.Please don't just run from "cure" to "cure". You are not really helping yourselves by doing this.
CommentHERE'S THE INTERSTITIAL CYSTITIS (they treat vulvodynia too) PHYSICAL THERAPIST WEB SITE AGAIN:www.ic-network.com/md/ptlistings.html
CommentTo AnnMarie: I agree self medicating is dangerous but my wife was prescribed all the meds she took by licensed doctors. The nature of vulvodynia treatment by doctors is to prescribe several different topical creams, hormonal creams, pain killers, possible surgery and antidepressants. Since there is do definitave cause or cure it is all guess work until the patient moves onto another doctor. Doctors do not like failure and when a patient seems to be untreatable she becomes a sore spot. This is the reality I have witnessed first hand and it is what I have read here for years now. The alternative would be to have doctors tell patients with vulvodynia " Sorry but there is nothing we can do to help you, please leave!". Until then doctors will continue to play a guessing game with these women possibly doing more harm than good and yes out of desperation the women suffering will self medicate and try all sorts of remedies some potentially harmful. This is what happens when money is not spent on research. A sad comment on our medical community and society!
CommentTo Marilyn: Once again I've posted way too much here and i'll back off for awhile. Before I do I want to make clear that while I love my wife and want the best for her own household is anything but calm. My priorities for myself and those I project on her are; first take care of yourself so that you can do for others, then if you are married put some time and effort into that to keep it healthy, along with that relationship would be responsibility to children, they did not ask to be here so we must do our best to care for them and help them develop. I'm far from perfect but these are my standards and my wife has different ones so life around here consists of a lot of yelling and time lost to arguing. See I'm no great guy. Like most men I think i have the answers and like most women my wife doesn't want me to solve anything, she just wants me to listen and shut up! To any guys reading this believe me you are not going to cure anything, learn to take a step back once in a while. Like I said before I'll shut up for now and allow the women who need to open up and share to do so without my presence.
CommentHello,I have written here before but I have received little or no response from others. So, if you have any advice I would please ask you to email me. I have been on the sugar free, bread/rice free diet (except brown rice which I was told was okay to eat) for a month now. I just began to take acidophilus (11 billion), vitamin E 450mg, and omega 3 (salmon oil) everyday for about two weeks. I have also been spraying with tea tree oil on my vulva since my main symptom is itching around the clitoris and the outer major labia, as well as the pubic hair area. My burning has been greatly helped by going to a chiropractor since this was nerve damage, but the itching began when I began to use vitamin E oil, and veggie oil for a couple of months. I do believe this caused me to develop a fungal, yeast, or bacterial infection there. Anyway, I do not want to use prescription creams, so can anyone tell me what they have used for itching and how it should be applied. I have heard of Emu oil, but it is like vitamin E oil I think I should avoid it. I know that tea tree oil, which I have been using for two weeks now, is supposed to be good for fungal, yeast, and baterial infections and that only 2% of the population has an allergy to it. It seems to help me, but I still have itching everyday, especially in the morning and at night. Do you know how much tea tree oil should be used, how it should be applied, and how often? I do not want to over do it. Also, any other suggestions would be great. I did not want to take Diflucan for several months because I wanted to use things that are more natural. Thanks for you help and please respond. Sharon
CommentTo Frank I guess I was really trying to say in my last e-mail that this illness can really cause alot of problems in a relationship.For the person with the illness it causes them to become irritable and unhappy which really stresses a relationships and that's what it sounds like your dealing with.Even though you don't think your a great guy the fact that your helping your wife by looking for awnsers on this website I thought was a real positive thing.By the way has your wife ever tried any alternative therapies ? Like acuputure or naturalpathy.And to the AnnMarie who wrote earlier I don't know why your getting so bent out of shape about women trying alternative things.My own M.D referred me to a naturalpath for some of my odd symptoms and my sisters husband who is a back surgeon refers people to Chinese acuputure doctors when they don't really know what is causing their pain and want to try something less drastic to see if it works and sometime it works.I think alot of M.Ds nowadays are more open minded about their patients trying alternative things because alot of them just don't know what is going on with alot of people and that is something my own M.D admited to me and why she asked me if I wanted to see a Naturalpath.Isn't it really the job of the doctor to help the patient feel and get better by whatever works?Whether it is drugs or acupunture?I personally feel it is better to see a natural doctor and try less drastic measures first and then resort to something more drastic like drugs or surgery later if all else fails.well take care.Marilyn
CommentAfter having excruciating pain in the vulvar area for 2 years with no help from several doctors on the east coast, I was finally directed to the Vulvar Pain Foundation by one of them. It was through this foundation that I learned of Dr. Paul St. Amand and the guaifenesin/salicylate free protocol.I have been a patient of this doctor for almost 5 years and happily I now have NO vulvar pain. It is a sad fact that most of us with vulvar pain have fibromyalgia. The vulvar pain is so horrible and all encompassing that we do not even realize the myraid of other symptoms that we have in addition to the vulvar pain.There were only 2 things that helped me on my journey to wellness. 1. The low oxalate diet which mercifully brought pain levels down somewhat and 2. The guaifenesin/salicylate free protocol. It was faithful adherence to this protocol which kicked the vulvar pain for good. I now have my life back thanks to Dr. St. Amand and this treatment.This protocol takes time and patience, and sometimes you have to get worse before you get better. But, the getting worse is evidence that the protocol is working. If you want to get rid of this pain permanently, following the protocol is the only way to go.For more information, you can take a look at http://www.tristateguai.org or contact support@tristateguai.org
Commentfollowing a low Oxalate diet and a anti yeast diet, what is there to eat? anyone have any suggestions, i feel like im starving myself!
CommentI feel cursed with this, i havent socialized in so long , i havent dated in over a year, vulvodynia is making my life fall apart! I feel like a new person but in a bad way
CommentTo Marilyn: My wife did not try alternative treatments because of the nature of her symptoms. If she had itching or burning or pain I think she might have been more open to the idea ,but because it was thinning and tearing she felt it was something best diagnosed and treated with mainstream medicine. Of course the medicines and even the surgery to form a new scar did nothing. I have watched my sister in law spend thousands on homeopathy and naturopathy along with chiropractic treatment such as applied kineseology. I frown on a lot of this because most of these folks promise the world and fail to deliver. I don't mean to insult all these folks and I'm sure they help many sufferers. There are crooks out there who prey upon the desperate. I agree with alternative treatment when other things fail or when suggested by a reliable source but vulvodynia is still not getting the proper attention and study. By the way Sharon Larson vitamin E and vegetable oil probably caused the yeast infection as you believed. My wife reached a point where she just stopped applying anything internally or topically. Also Vitamin E is sold here in increments such as 200, 400, and 600 IU or international units I have read that it is best taken with selenium of no more than 200 mcg or micro grams. We have tried to use it to heal the tear my wife gets and also as a lubricant but it hasn't helped. Best of luck with your answers.
CommentWell, just wanted to give some of you who were following Wendy's advice an update. I went to see her last week. She and her husband had some business in Scaremento Ca. I live about 3 hours away and decided to make the drive. It was very interesting. She did some testing on me using positive and negative engery. It's something she learned quite some time back, and I was very opend minded to it since I have been suffering from vv for almost 8 yrs now. According to her testing I have a major yeast problem (which I knew) and need to stick to eating foods low in oxolates. I have been on a yeast free diet for almost two months now, and try my best to stay away from high oxolate foods. I have been using GSF and olive leaf extract. Taking calcium citrate with Magnesium and have added Dong Quai (per Wendy's testing) which is a Chinese herb that helps to balance female hormone levels. I have to say I feel better today than I did two months ago. I am still not 100% pain free, however have more good days than bad. I also added NAG's, but seem to be having really bad headaches, does anyone know if NAG's causes headaches? I am going to stick with the program. I have to believe that I am feeling better because something I am doing is working. Am also finding the info lately about Fibromalysia very interesting. I was diagnosed with it about 7 yrs ago, but the symtoms just disappeared one day. With this recent terrible flare of of vv, they have come back. Major joint pain, lower back pain, ankle pain, burning sensations in the legs....ringing in my ears. I really think they are related. I also have to agree with the recent posting that not everything that works for one, will work for another, however everything that I am doing is natural and won't hurt you to try it. Will keep posting as to how I feel. I hope soon I can post and honnestly say that I pain free!!!!!!!!!!Thanks to everyone for their postings and advice, it is truly theraputic to log into this site and read all the messages!
CommentHi Frank, I definitly agree about some of the alternative healers out there.Ive had some really weird experiences with some of them and had I not been in the pain I was I would not have ever spent one minute around such strange people and your right alot of them are out to take advantage of people who are sick and suffering.I did eventually find one Chinese doctor who cured me of this problem twice and I felt wonderful but then after several months my symptoms would return so I have to keep up with herbs has given me in order to feel well.I guess thats alright though since most people take drugs everyday I just take herbs instead.I think Chinese medicine is a different than most alternative things out there it is based on some science.My M.D acually has a backround in traditional chinese medicine and my Chinese doctor is an M.D in China.And to the female who asked about a good oil to use down there I have to say that I have used jojoba oil and I like that it is sappose to be the closest thing to the oil fround naturally in the skin.well bye. Marilyn
CommentFrank, I hope this won't upset you but I just wanted to say how sorry I was to read about the loss of your daughter. It's always refreshing to read your perspective on the guestbook. You're so honest about your own failings and seem uninterested in playing the victim. I'm sorry that you're being tested again so sorely with your wife's present health problems. It's little wonder she's suffering physically after suffering such an incomprehensible loss. But please know that you're in my thoughts, and that so many of us are glad you're here. Best wishes, Shannon
CommentWOW I'm so far behind on reading posts! GEEZ! I'll be here forever. There was someone who got my e-mail addy off of a post, but I don't know if it was from this site or not. It was deleted somehow. It was subject: bladder infection and the person wrote from a hotmail account. Could you plz write me back?!?!?!THANKS!
CommentRachael- The vulvar pain foundation tests for oxalates. It is $350, and some insurance companies will reemburse you for the test. Or at least some of it. Your doctor can have you tested as well, but the difference is when your Dr. has you tested they usually have you combine all of your urine in a 24 hour period where as the VPF will send you a kit with instructions and then they will send you a chart of your peaks and a supplement plan to go with the low oxalate diet. You then become a part of the "Pain Project" they work with you on taking the right supplements and at what time of the day etc.I am saving my $ right now for the testing through them. I want accuracy not just someone telling me I have alot of Oxalates. I know that's part of my problem, the majority of it I'm sure. I was taking Flagyl like candy for months for BV and then BAM, I got VVS. I have the order form from the VPF for the kit. I am not very tech intellegent, but my hubby is and I think theres a way to scan the darn thing and then e-mail it. If you want I can see if he will do it for me and get you a copy. Let me know
CommentMiri-I've been just awful on the diet. I never did know how to diet correctly, mainly because I never dieted before. I think though that you will have to stick hard to the diet for quite sometime, but then you can go to ore foods. Wendy eats whatever now. That skin is just damaged from the oxalates and it has to heal. I wouldn't go and eat tomatoes all the time again though! Or at least I won't. I have a soft spot for the little buggers! heheheI am so glad you are feeling better! Now if I could get motivated and stick to the diet. You'd think the pain itself would be motivation enough huh? ;o) I just like food too much these days. I was annorexic for most of my life, until I got pregnant asn was told I would kill my child and myself if I didn't eat. I discovered that food is GOOD. TOO good. Now I eat and eat and eat. I started taking a multi-vitamin today. My aunt is a nurse and she said some women she has come across have acquired vulvar problems just from a vitamin deficiency. You take one a day so you cant really overdose on any one vitamin, plus I eat horribly so it will probably be good for me. I assume. If anyone knows anyhing negative about us taking multi-vitamins let me know!I have the bottle, I havent taken one yet.
CommentTo Shannon: That was so kind and thoughtful, thank you. My honesty gets me in trouble at times but that is who i am. Yes the loss of a child is tragic but what we do following such an event can be even more tragic. We have choices to make, to mourn and move on to enjoy a better future or to die emotionally along with our loved one. It hurt to lose her and all that might have been but we could do nothing to change it. We did have another child, she is not a replacement but she is a joy! I'm not the kind of guy who hangs out with the boys and I'm not a sportsperson, I love being intimate with my wife so yes this illness bugs me. Still, we have our moments of closeness and things could be so much worse I'm thankful for what we have. My thoughts and prayers go out to all who suffer, to the young women here who have not had a chance to enjoy their sexuality, to the more mature ladies who deserve better than to be in pain. When someone here gets upset with me I know it's partly my fault and partly the pain, let's hope the pain will soon be a thing of the past. Bye.
CommentI am so depressed, i dont no what to do with myself anymore. I keep getting constant bacterial and yeast infections wich trigger my vestibulitis. Diflucan doesnt work for me anymore, my body got used to acidophlois, creams make me irritated and cause my burning to worsen. i get this thick yellow discharge that looks like i have a really bad infection. I try to follow a diet but it still doesnt work. I dont know what to do with myself, i cant live off these creams everyday for the rest of my life!!! i was thinking about getting off the birth control to see if that helps, does anyone think that the birth control can be triggering yeast infections? i need some advice
CommentTHP-Certain types of Bc pills CAN trigger yeast infections and some women have discontinued taking the pill and within about 12 weeks have had their v.v.s. disappear completely and then reintroduced the BC's and the v.v.s. returned. What type of BC's are you using? I suffered with bacterial vaginosis for about 8 months right before I got v.v.s. I believe this started because of all of the Flagyl I was taking. I was just told by my doctor, NOT the one who prescribed the Flagyl, that you should never use an antibiotic for over 2 weeks, if it's not working then it won't work and something else should be tried. If you are using the Diflucan for yeast then what are you using for the bacterial infection? I was never given Diflucan for the B.V. so if that is something they are using then I'm not farmiliar with that. Creams irritate me so much as well. Things that would never have bothered us before become irritating to us because of the condition of our skin. Have you done a yeast cleanse yet? They sell them at health food stores. On the package it says to use it for a month, but I know of someone who used one for 3 months straight and it was fine.Some of the herbs contain vitamin C but the lady I talked to at the health food store said its such a minute amount tht it wouldnt cause a flare, but thats up to you. Go to your local health food stores and talk to the people there and before you buy anything decide which person you felt knew more about your condition and how to help you choose a course of action and stick with that person.Don't be embarrassed. That's what they are there for. Grapefruit seed extract drops in your water are good also as well as using Olive Leaf Capsules. They take time to work, they arent a quick fix. Herbs in general take longer to start working, but they are natural and obviously chemical meds have done negative things to our bodies.Plus if you follow the directions with the GSE, you will more than likely want to puke. Just put 3 drops or so in a bottle of water and do that throughout the day everyday instead of 5-15 drops 3 times a day. the taste is just awful. Let me know which BC pills you are taking and I can check it out for you, typically the ones higher in estrogen are better. Ones like Ortho Tri Cyclen, Ortho Novum 777 and Ortho Cyclen are some of the higher estrogen ones. Or you could even go off for 3-4 months and see if it makes a difference. My doc said it takes 12 weeks to notice a difference once you discontinue using them,if you suspect they are causing a problem. I was off for 16 weeks and what I noticed was the pain right before my period was much worse when I was OFF of them. E-mail me if you want, I talk to a bunch of women on quite a few sites so I can try to get some info for you about the yeast and bacteria. I dont have a problem with yeast but I did with bacterial vaginosis and it is frusterating. It was the Flagyl tht made it go away, but I believe it was the Flagyl that caused the v.v.s. Maybe even try a new doctor. I also remember reading up when I had BV that you should take one of the B vitamins, I believe it was B-12, but I don't remember and to also take an antioxidant, and Olive Leaf is an antioxidant. Look up the benefits of GSE and Olive Leaf online.Just remember, it takes time to get rid of these things and like one doc told me, the bacteria is determined to stay, but we have to be more determined to make it go away.
CommentTo thp: Have you and YOUR PARTNER both taken medication to treat the bacterial infection? If not you are reinfecting over and over again. Also make sure your partner practices good hygene, if he loves you he will. The mouth contains over 600 bacterias alone, brushing, flossing using an antiseptic mouth wash such as listerine does help to kill these bacterias. Cleaning the hands and under finger nails may sound insulting or trivial but it is you who are suffering, insist on cleanliness. Make a list of all the things that come into contact with your vagina through washing, clothing and any other thing you can think of and eliminate anything that may contribute to the bacteria. Good luck.
Commentcandi- im using yashmine birthcontrol. The only reason why my doctor put me on yashime is because i had a hair problem (its suppose to slow down hair growth) and becasue i had my period for like 3 months straight. But when i got the vestibulitis, my gyno said i was on a good start cause BC helps vestibulitis. But everyone seems to have their own opinion. Im guna try and get off of it for awhile and see if i see a change. Candi ur such a big help. IM guna try everything u said. I take vitamin Bcomplex. Also for my bacterial infection i take antibiotics or creams, for the yeast problem that i just got back ive been using creams cause the diflucan doest work.Also to the other girl that wrote, i use hypo allergenic soap and laundry detergent. I only wear cotton underwear, and i try to stay away from sex as much as i can!
CommentTHP-I just read a site about Yasmine. It said tht Yasmine contains the same amount of estrogen as it does progestin. Some women can handle that. I am wondering if some of your problem may be because of the BC's. I would definately either go off for a couple of months. At least 4, or try one that is higher in estrogen. Either Ortho Tri Cyclen, Ortho Novum 777 or Ortho cyclen. After I have my pap in a few months I am going to probably switch to Ortho Cyclen. I just recently heard about that one and I believe it's higher in estrogen than Ortho Tri. Also since you are haivng sex, even just sometimes, your partner can also have a problem with yeast and/or bacteria. Sometimes when a woman has recurrent bacterial infections the doctor will request that the partner be treated as well. And YES men can get candida as well. They just don't show signs like we do. Your partner can do a candida cleanse as well. If I remember the percentage right, I think it was 80% of the population has some kind of candida overgrowth. The best kind of soap to use is Aveeno. Just plain ol Aveeno. It has a weird smell, but nce it is rinsed off it doesnt leave an odor on the skin. Arm an dHammer dye free, scent free laundry detergent is good also, and when in doubt, rinse your clothes twice! I always run an extra rinse cycle. And be careful about letting shampoo run down when you are in teh shower, and NO baths! When I started getting the BV infections I asked why I could get those and I was told, hygeine! I said NOOOOOOO, I am very clean, I bathe daily and wash myself! And she said, well, hygiene doesnt mean you are dirty. I shower sometimes twice a day so I knew that wasnt the case. What she meant was taking a bath can cause all sorts of ickyness to go up inside of the vagina. You wash with soap, it goes up, you may shave your legs, guess what will go up there! Ewwwwwww, you wash your hair....And no soap should ever be used on the vulva. It WON'T cause you to smell badly just washing with water. as a matter of fact, it is the soap that causes a bad odor of our genital area. It causes bacterial problems and the bacterial infection is what causes bad odor. Trust me, I was freaked at first about not using soap to wash myself, but after I realized I had no smell just washing with water, I was perfectly ok with it. Not to be gross or offend anyone, but I have heard it said by younger guys (of course) for years, this little saying. IT always grossed me out, but now it makes me snicker. If it smells like fish, eat all you wish, if it smells like cologne, leave it alone. I never really got it, but now I do. Natural smells are healthy, trying to cover up a smell by using scented things is NOT, because you are trying to cover something rather than make the problem causing the smell to go away.True?Sorry ladies, didn't want to offend. But leave it to a guys gross saying to make some sense.Just remember, it takes time and determination to get rid of the infections.
CommentTo Candi: I promised to shut up but I just have to comment on your post. You are a riot and I mean that in a good way. I haven't heard that exact saying but for what it's worth I for one love the natural scent of a woman. If women would stop buying into all that advertising junk and just trust nature a bit more they would save money and feel better. There is a big difference between body odor from not washing and body scent. I guarantee that if men used scented products on their genital area we would be having all sorts of skin problems. Great post!
CommentFrank-I have 2 younger brothers, so over the years of living at home with them, I have heard it all!I was siting watching tv the other night and this commercial came on about some cleansing film! It looked like some little square piece of see through paper that you stick inside and its supposed to take care of vaginal odor. I would have pooed my pants if I could wear them!
Commentcandi- how old are u? im 23. I am guna follow your advice cause u seem to know what ur talking about. It wont hurt to try. You always have alot to say which is good. I will keep u updated. I agree with you on the washing with no soap. WHen i first got vestibulitis i didnt use soap, i just used water, ahh i didnt feel so clean but it didnt have a smell! IM guna try going off the BC pills, im kinda scared to though cause my vesbibulitis burning used to be sooo much worse, its still bad but not as torturing as it used to be. The only thing that got worse was bacteria and yeast, but thanks for the advice!!!
CommentAnnMarie-i was just scrolling up and came across your post. I must have missed it when I was updating on what I missed. It is not Dr. Glazers place to intervene. I respect him as a medical professional and as someone who offers his site to allow us to discuss our problems and to exchange info, but he is not our doctor. I am sure there are those who have seen him and will see him, but he can't tell us what we can and can't try. That's what our own doctors are for. Not all of us need physical therapy as a form of treatment just like not all of us need estrogen creams or candida medications. We all arent suffering because of the exact same cause and it is up to us as to what we want to try and what we don't. I got v.v.s. after discontinuing my BC pills after 7 years and after long term use of Flagyl. So for me PT isn't going to reverse the effects of what caused this. I follow the VPF's suggestions becasue from the studies I have read by them, I believe my cause for pain is oxalates. Caused by long term Flagyl. PT isn't going to repair my skin or cut down on oxalates in my system. Some of these women have candida, diet and medications prescribed to them by their doctors and if they choose to follow the natural route, is what's right for them. Can PT rid them of candida? Please dont take this as me being bitchy towards you but we all have different problems causing this and it is not a one way fits all sort of condition. Yes there are those that choose to go overboard, but we sit here and discuss what we have used and the reactions to it and what WONT work and what CAN work according to our personal problems. If someone chooses to not listen or follow advise then that is their perogative. You mentioned estrogen cream, yes I am going to try that for a few months in a natural compounded base. Estrogen is a natural hormone in a womans body, and vitamin E is in foods we eat, so the estradiol can be mixed in an E base. Estradiol has been studied extensively and has been proven to thicken and heal the skin. there is a woman named Dee on the Yahoo Groups vulvardisorders, who was in pain for 13 years (or maybe longer) and she has been using Estrace cream for years and is pain free. She took med classes and studied up on hormones before she tried using anything. She was a wreck, and now she's not. You can knock all things for everyone. If someone chooses to overload on something after reading post after post then thats up to them. Follow advise given by poeple who have used certain things or dont. For some PT may be the answer, but for some it isn't and even Dr. Glazer would probably agree with that. Take a look at the rest of his site, if I remember correctly Estrace cream is one of the things he says to try. Personally I'll follow the advise of those who are living pain free over those who arent and so far, the low oxalate protocol along with the supplements given by the VPF and Wendy along with trying the estrogen compound in natural base is what I am going to do. As NOTHING else has helped ME. I prefer a doctor NOT intervene here unless they have found a miracle cure for us.Just MY opinion
Commentcandi- i have two more question... where can i get grape fruit extract drops and would the grapefruit extract cause my the vestibulitis to act up , like cause me to burn more?and another thing, i take probiotic,whats ur view on that?
CommentTHP-Im no expert, specially on yeast, I am just passing info I have been given from others who those things have worked on and from my experience with BV. After the final dose of Flagyl I havent had BV again and that was over a year ago. But I have v.v.s now so.....If you are afraid ot go off BC's completely, and I have had more burning around PMS time when Im not taking them, then try another type. Something higher in estrogen like one I mentioned before. Personally I think your bf should be treated for bacteria and yeast as well since you keep having recurrent infections. It wouldnt hurt him to try. He can use olive leaf and GSE as well. You can even douche with the GSE, but it has caused some burning for some and I am not really big on douching with ANYTHING. But I have read, dor those who DO douche with things like GSE and baking soda etc. that it is best if you use a bulb syringe (the things you suck boogers out of your babys nose with) It is not a long stem like a douche bag has so the fluid wont reach up as high and also squeeze the bulb very gently that way it wont push the infection up deeper inside and cause infection to our other womanly parts. ;o)Like Wendy says, negtive in, negative out, positive in, positive out.Now if someone would kick my bum into shape so I'd do better on this diet....
CommentTHP-We must be on at the same time. You can get GSE from your local health food store, I get one by Nutrabiotics. You get like 4000 drops so it will last a LONG time. It hasnt made my vv worse, and it didn't make Wendys worse either and we are very sensitive ladies to everything. I also believe in taking a probiotic, especially if you are taking so many antibiotics. Just make sure to get a good one, they are more expensive, but you get what you pay for. They should be ones that are supposed to be kept in the fridge and that contain acidophillus as well as b.bifidum. They say you can eat yogurt, but theres no way of telling how many live cultures ae in it, especially since you dont know how the yogurt has been handled by the store. You may want to go on the candida diet for a few months as well. You cant eat all sorts of junk while trying to clear your candida. It wont work.
Commenthi everyone. Its so good to read about others who suffer from this HORRIBLE, devestating condition. I first stared to experience pain and vulva pain when i was 16. I'm now 21 and still battling. I' ve done the anti-deprssants, fungal creams , antiboitics, steriods, the lot. I'm currrently taking the oral anti-fungal nizoral. about 6 months i have been taking it, and it seems to have decreased the pain somewhat which gives me a little bit of hope. I've also started using dilaters. I would love to here from anyone that has tried nizoral and dilaters and how it affected you - wether it helped at all. This condition is terrible and i really wish there was more research being conducted RIGHT NOW. This bullshit curse needs to be eradicated. no body can understand what it's like unless they too suffer from the condition. It's lonely and tiresome. I reckon were all sick to death of doctors and medication & especially the lack of research and understanding. Bless you all- I hope we can eventually beat this and stop suffering in silence.
Commenthi everyone. Its so good to read about others who suffer from this HORRIBLE, devestating condition. I first stared to experience pain and vulva pain when i was 16. I'm now 21 and still battling. I' ve done the anti-deprssants, fungal creams , antiboitics, steriods, the lot. I'm currrently taking the oral anti-fungal nizoral. about 6 months i have been taking it, and it seems to have decreased the pain somewhat which gives me a little bit of hope. I've also started using dilaters. I would love to here from anyone that has tried nizoral and dilaters and how it affected you - wether it helped at all. This condition is terrible and i really wish there was more research being conducted RIGHT NOW. This bullshit curse needs to be eradicated. no body can understand what it's like unless they too suffer from the condition. It's lonely and tiresome. I reckon were all sick to death of doctors and medication & especially the lack of research and understanding. Bless you all- I hope we can eventually beat this and stop suffering in silence.
Commentcandi- i just wanted to let u know that i havent had sex in 6 months. but the yeast and baterial still comes back atleast once a month
CommentI was interested in knowing of anyone has used Progestin cream for vulvadynia symptoms. Let me know if you have.Thanks.
CommentHi Rachael:This is my second day of using progesterone cream. I had my hormones tested and found out I was dangerously low in progesterone. I hope it will help, but I dont know yet
CommentI LOVE THIS PAGE. KEEP IT UP.
Commentwhat can be done for buring vaginal pain? i tried elavil anti depressants and i was on it for a long time but it doesnt work with my body. Does anyone have any other suggestions to get rid of the burning?
CommentThis is a post from another siteGuaifenesin for V V Hi,I used to write into the vulvar pain groups. I can't remember if this is one of the groups I used to write to or not, but I had to let you all know my good news! It's been a long time since I did but I wanted to let you all know that I joined the Vulvar Pain Foundation and I started using guaifenesin for my fibromyalgia. I started hearing some very good results people were having with guaifenesin with their V V problems. I got all the info about the oxalate testing and I got the Estrace (and I'm sure those are good things, too, but I didn't do them) and then I decided I would just go ahead and give this GUAIFENESIN a chance to work before I spent all that money on the other testing, and I decided to wait on using the Estrace, too.I had had so many different kinds of tests done on me already and spent a TON of money on doctors until I finally got the diagnosis of fibromyalgia, and I really didn't want to spend any more money right then.I started realizing that the guai protocol was helping me after 7 to 8 months on it (I didn't keep a journal, darn it, or I would know for sure when) and I started being able to go off of some of the standard FMS medications. I started getting some more energy and my husband I started having intercourse again, and I noticed that it didn't feel like I was being sandpapered anymore! This is big because I had suffered from painful intercourse for over 20 years! Once a year at least I would get up my nerve to see a specialist about it and I would be told that I was too small down there and that having a baby would open me up and then sex would be more comfortable (did NOT help); or told that something horrible must have happened in my past to make sex painful for me (absolutely had NOT happened); some told me if I just had sex more often it would quit hurting (WRONG, made it much worse!).The doctors always (except for one who had been to a Vulvar Pain Foundation meeting) looked at me like I was the only one on the planet not enjoying sex.It was so humiliating.When my husband and I realized we could have intercourse without it hurting me so bad we overdid it for a while. Then I started getting incredibly itchy in the vulvar area and I got very scared, afraid that I was going to end up worse than before, but I kept taking my Guaifenesin and after a month or so of being very even more careful (using lots of vasoline when we had sex...I know, that's not what's recommended by doctors but that was the only thing that didn't make problems worse for me). I made sure that I ALWAYS urinated right after sex, and when I was on my period I started only using Kotex pads (in one V V group they had recommended that and I thought it was strange but I would try it and it really helped me not get so irritated in the vulvar area during my period. Plus, I started not wearing underwear as often as I could to let the vulvar area get as much air to it as possible.Anyway, I got better!I was reading some of the posts on here where people were asking about guaifenesin and the protocol and so I just had to let you all know that it has definitely helped me. I have been on it for 3 years now! I am sooooooo much better fibro-wise and in the V V department, too.Make sure you use plain guaifenesin, not the kind with pseudoephedrine in it or decongestants like that.Before I started using the guai I have to tell you for a good while I didn't think I wanted to live anymore because I was in so much pain all the time, but now I can truly say that the Guaifenesin protocol turned that around for me. I thank God that I found out about it.I know this sounds like a commercial for the guai protocol, LOL. I just HAD to tell you all that it can work! There are several VERY good guaifenesin support groups online, too, that are tremendously helpful.Love,queenie
CommentCANDI WHAT IS guaifenesin and fibromyalgia? im interested in trying anything that will help!
Commentwhat happened to everyone?
CommentSWEETS-Some of us have other conditions along with or causing our v.v. FMS, and IC to name a few. I have been wondering if my joint pain and fatigue was related to my v.v., but when I looked into FMS the tender points on the diagrams were always in different areas, but Su who posted a few days ago had her symptoms come back and her points and mine are pretty much alike. I also have TMJ as well as most of the other symptoms on the following site http://www.fmnetnews.com/pages/basics.htmlIt will be easier for you to read about it there otherwise I'll take up alot of room. Following is a few sites in which the lady whos post I put above sent me last night. Dr. St. Amand who works with the VPF has FMS! As well as his wife. http://www.fibromyalgiatreatment.comhttp://www.fibromyalgiatreatment.com/Research_Genito.htmI havent read these yet, but she said they would be the ones to go to for info.
CommentHi Candi: Did you have a hard time getting diagnosed with Fibro? I'll be seeing a Rheumatologist soon. I have lots of joint pain, as well as muscle pain. A different Rheumy that I saw said that Fibro doesn't affect hands and feet, but I've read about lots of women on another site that have terrible pain in those areas. The high humidity really makes me hurt. I just wish I could get a proper diagnosis already so I'd know what I'm facing and then go from there. I have TMJ also. I DON'T have fatigue though.
CommentHi everyone: There's a short article in the lastest issue of "Woman's World" magazine about VV. It's titled, "Breakthrough Cures For The Worst Female Pain." The minute I saw the title, I knew what it would be about. It doesn't mention anything new though. It talks about Estrace cream, lidocaine, biofeedback and surgery. At least the subject was mentioned.
Commenthow come good vestibulitis specialists dont take insurance? does anyone know any good long island gyno's or specialists that take insurance? please im so desperate..... andy good recomendations?
CommentSweets, check out this website for their medical directory. http://www.vulvodyniasupport.com/support.html
CommentSweets: The "Experts" can charge so much and not accept insurance because they are treating a illness with unknow causes and no real treatment. These doctors take advantage of those who are suffering in pain, those who are emotional desperate. They offer no guarantees, just tests that lead to nothing but more money spent!
CommentSweets-I went to Shands (its like the Mayo clinic) and saw a specialist and they took my insurance. It depends on the doctor. Don't give up. Besides, it doesnt take a specialist to treat you properly. The doctor I am seeing is wonderful and shes no expert. We just work together. And she doesnt take my insurance. I pay for her because she cares and doesnt treat me like crap. Like the specialist did. The ONLY reason I even saw the specialist was because the doctor before my present one was baffled at my pain. I was the only patient with vestibulitis he has that has pain from the clitoris on down AND my pain came literally overnight and he wanted to make sure I had a correct diagnosis. I personally only use my doctor these days to write my scripts and to do my yearlys. I do research on my own and talk to women on other sites who are suffering and who are pain free. First have all of the typical tests done, there are plenty.I still don't know if I had all of them. I still need to have my oxalates checked. Only do a biopsy if your doc thinks its necessary cause it hurts like the dickins.Have STD's checked, have your blood cells checked, thyroid, blood sugar, immune system, bacterias, strep (I just found out you can get the strep virus here), yeast and NOT just a vaginal swab, maybe KimB can steer you in the right direction for the correct yeast tests?, hormones...I am sure there are some I am leaving out if anyone else can help please do. Find out what is positive and what is negative and then go from there. Ask questions here if in doubt as what to do after that. I'm a huge supporter of Dr. Solomons and Dr. St. Amand of the VPF, but I feel my problems stem from oxalates and I am being told by a few to talk to my doc about FMS, because I have joint and tendon pains and fatigue so that and my urine oxalate test is next on my list. I just have tht need to have tests so I know what to rule out. Certain things make me feel in less pain and then there are days when nothing sems to help. I just want to be able to rule out everything. So far I am told I am the picture of perfect health. Yet I have pain.....
CommentHello to all the new ladies! I haven't posted in about six months. Just trying to get all my highly anticipated trips back home out of the way before I tried any new meds. I am very cautious about taking medications now...I wanted to let all the new ladies know I have suffered with this condition for three years now. Three long years of wondering what the hell is wrong with me. My vulvar symptoms began immediately after my period when I was finishing up a course of Keflex for a minor bladder infection. Like many ladies here, I was able to enjoy YEARS of painfree sex and delivered three healthy babies vaginally with rapid recoveries each time. Yeast--what's that? I never suffered from any sort of vaginal infection in my 35 years. Then this damn disorder took control of my life. Sometimes I have very good days, others are so irritating that I just want to scream. I'm over most of my depression, though, because I am in an incredibly loving relationship with my husband of fifteen years. It still sucks to not have the hot and heavy sex that so many people seem to take for granted, but I must be thankful for the fact that we can have sex at all. I wanted to comment on the alkaline nature of semen. My hubby actually let me test his with a PH strip--holy cow--can you say way over 8??? Since that discovery he has willingly withdrawn before he ejaculates. This has helped me control my suseptibility to bacterial problems. All I can say is I am hopeful we are all on a path towards an acceptance of our condition and are on our way to finding what helps for us. We are all individuals but it certainly helps to have the support of each and every one of you. Take the best care of yourselves--because you all deserve it! S.
CommentDoes anyone else drink water from a water cooler everyday? I was fine until I started my job 3 years ago. After the first few months on the job I developed it. I have noticed the bottled water from this cooler sometimes smells like chlorine. I wonder if this could be an irritant?
CommentMy pain started shortly after I started working at an office 3 years ago. I drink water from the cooler many times a day- everyday. I have noticed recently that the water really smells of chlorine. I am wondering if this could be the cause of my pain. Anyone else with similar thoughts???
CommentCat-I definately wonder if it can irritate. I will only drink Zephyrhills Spring Water. It is bottled about an hour from here and I know a microbiologist that works for them and says the water is the best. I went and got filters for my entire house as I don't even want to shower in chlorinated water adn I noticed I would become worse after showering and no soap touched me so it had to be the water, I now dont get worse afterwards. I like you never had yeast or anything else in 30 years adn then BAM after taking an antibiotic I got this literally overnight.How did everyone elses pain start? Did anyone else just wake up one morning in pain and it not go away? I was ok one day and the next there was pain. I noticed some improvement over the past week with the Estrace cream and then had irritation more today, but I am close to that time of the month and always get worse. I am going to be really good on my diet from here on out. I need to take care of me and not worry so much about everyone else that I neglect my needs. And for sure stress doesn't help, as I am under a TON.Anyone have a Valium? hehehehe
CommentHi Delores,Thanks for your response. I, too, am trying the progesterone cream. I also use Effexor xr, combipatch, glucosamine, and lorazapam as needed for severe days.I have had real improvement over the past 6.5 years. It takes so much time, but I believe that my situation is multi facted.Foods do bother me and I believe that my hormone imbalance is part of the problem.Let me know if the cream has any affect on you. It has made me feel a little nauseated. I am SENSITIVE to almost every medication. May be this will be the last component to unlock this horrible affliction.Rachel
CommentFINALLY . . . a GREAT article in SALON magazine. i was so thrilled i personally wrote the author a HUGE thank you email. Trouble down thereIt can keep you from having sex, wearing jeans, even riding a bicycle -- and 16 percent of all women will have it at some point in their lives. So why is there no cure for vulvodynia? - - - - - - - - - - - -By Lynn HarrisSept. 4, 2003 | Leslie tried creams, topical acid, surgery, horse tranquilizers -- even denial -- but for more than 10 years, nothing would stop the pain. She ended a relationship, stopped having sex, filled in the gaps in her social life with gay men. Why? Because Leslie (not her real name), a 34-year-old corporate lawyer in Manhattan, suffers from, arguably, the most uncomfortable kind of discomfort: genital pain. In her case, vulvodynia -- literally, pain in the vulva. "People are talking and learning about it more now, but I feel like I'm on the forefront of this shit," sighs Leslie who, with the right combination of doctors, therapists and treatments, finally has the condition under control. "Twice now I've brought it up to someone who's said, 'Oh, I know someone else who has that.' There are all these women fumbling in the dark." According to the latest estimates, in fact, 6 million women are suffering from vulvodynia right now. "It's the condition that everybody thought nobody had," says Christin Veasley, director of research and professional programs at the National Vulvodynia Association (NVA), a nonprofit organization created in 1994 to improve the lives of people affected by the condition. And yet while vulvodynia plagues millions of women, it is a misunderstood and understudied women's health problem. An interesting comparison: In 1992, the National Institutes of Health funded 60 studies on endometriosis, another painful women's health disorder that affects 5 and a half million women, compared with only six studies they have conducted on vulvodynia -- ever. The latest research, done at Boston Brigham and Women's Hospital and published in April's Journal of the American Women's Medical Association, found that 16 percent of women will experience chronic vulvar pain, described as a burning, stinging or stabbing sensation, either constant or on contact, ranging from annoying to disabling, and lasting three months or more. This "lifetime cumulative estimate" means that 14 million American women, of all races, will experience vulvodynia of some kind at some point -- 5 percent of women before age 25. Vulvodynia strikes white and African-American women at similar rates, but for reasons yet undetermined, Hispanic women are 80 percent more likely to be affected. And yet even though the condition is so widespread, roughly 30 percent of women will not seek medical treatment for vulvodynia, even when the pain is keeping them from having sex. Many assume from the burning and itching that they've got the yeast infection from hell (as do some doctors even when there's no yeast present ) and -- futilely -- wind up mainlining over-the-counter Monistat. Some, depressingly, may not realize that intercourse is not supposed to be painful. And there are likely a handful who are so freaked out by vagina pain to begin with that they just keep walking around with their deep, dark, painful secret. Those who do seek treatment -- generally those in the most pain -- typically see five doctors before getting a proper diagnosis and worthwhile treatment options. Readers with total "Sex and the City" recall may be thinking, hmm, vulvodynia, isn't that what Charlotte had on the season premiere a couple of years ago? Yes. Problem is, on the show, Charlotte was told that her condition was not serious, "mostly just uncomfortable," and was sent off with some pills to "get it under control" -- which apparently worked by the following Sunday. The subject of another high-profile case study was much less fortunate. In 2001 Susanna Kaysen, of "Girl, Interrupted" fame, published "The Camera My Mother Gave Me," a spare, graphic account of her own battle with the debilitating vulvar pain. Kaysen writes (brace yourself): "Some days my vagina felt as if somebody had put a cheese grater in it and scraped. Some days it felt as if somebody had poured ammonia inside it. Some days it felt as if a little dentist was drilling a little hole in it." Even when the pain fades temporarily, she knows it'll come back, especially if she has sex with her then-boyfriend (who totally doesn't get it). The constant presence, or threat, of pain thus transforms -- narrows, disfigures -- her entire life. "My vagina had died," she writes. "I'd forbidden it to express interest in any person or activity, because I knew if I indulged it it would start up with that zing, sting stuff again. Exiled, starved, and in solitary confinement, it had eventually succumbed." Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn't so much lost or won her battle; rather, she's signed a treaty, with massive concessions. "Celibacy is a great cure!" she said wryly in a recent phone conversation. "I wasn't interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire." For Phyllis Mate, 54, executive director of the NVA, a mild form of vulvodynia started in her 20s and became such severe knifelike and burning pain in her late 30s that she could barely walk. She wound up in bed and on Percocet for months; her doctors were baffled. "It was the first time in my life I thought about suicide," she recalls. "I remember saying to myself and my friends that if I had to live like this for the rest of my life, I'd rather be dead." Mate still cannot wear pants or pantyhose, ride a bicycle, or sit for longer than about 30 minutes at a time without pain. But -- with the help of anticonvulsant medication -- the pain is not as constant as it used to be. "Now I have weeks where I'm doing pretty well and then weeks where I am doing very badly," she says. Is no one helping these women? Well, some doctors are trying. Complicating matters, however, is the fact that the term "vulvodynia" describes a condition, not an illness -- it's the symptom, not the cause. It means your vagina hurts like hell, period. It's kind of like when you have "conjunctivitis," which is basically "inflammation of the stuff covering the eyeball" -- could be allergic, could be viral, could be bacterial, depending. As for vulvar pain, doctors struggle with diagnosis and treatment mainly because vulvodynia is what you have when you don't have a specific infection or other vaginal disease. It's often completely invisible, too. "It's a rule-out diagnosis," says Dr. Elizabeth Gunther Stewart, a coauthor of the Boston study and author of "The V-Book: A Doctor's Guide to Complete Vulvovaginal Health." "There's a long list of physiological, gynecological problems -- like skin disorders and infections -- that can cause pain but aren't vulvodynia. People recognize that it exists but are still not very good at treating it. We're just getting started in terms of giving women what they need." Here's what doctors do know. Vulvodynia generally shows up in two forms. There's Vulvar Vestibulitis Syndrome (VVS), which is pain around the vaginal entrance only upon touch or pressure (sex, gyno exam, even sitting), and there's Dysesthetic Vulvodynia (DV), which is diffuse, unprovoked pain. Its various causes appear to include irritation or injury of the pudendal nerve (one of the main nerves in the genital region), allergies or chemical sensitivities (reactions to irritants either external, such as detergent, or internal, such as the salts called oxalates in urine), abnormality in the pelvic floor muscle (such as "hypertonicity," or excess tension at rest), and genetic susceptibility to certain types of inflammation. Depending on what they think is the cause, doctors may try topical anesthetics or estrogen, tricyclic antidepressants (for pain, not depression), specialized physical therapy, or even surgical removal of troublesome nerve endings. Pam Fischer, 50, a registered nurse in Naperville, Ill., finally found several likely culprits for the burning and itching that was so intense it kept her bedridden -- "totally overwhelmed, just hoping it would calm down" -- for weeks at a time. It turned out she not only has several allergies, but also fibromyalgia, a chronic pain condition that affects muscles and soft tissues -- including, in some cases, the vulva. She now carefully selects only hypoallergenic products and takes the drug Guaifenesin -- an expectorant used to liquefy mucus that also appears to have the effect of flushing pain out of tissues. The pain's not 100 percent gone, but at least the mystery is. "It comes and goes, but I know the reasons for it," she says. Unfortunately, some treatments have their risks and downsides. For Leslie, surgery -- removal of inflamed glands near the vaginal opening -- had the opposite of the intended effect. "The doctor fucked up the nerves in the area and didn't treat the underlying condition. That's when it started hurting all the time," she says. For Christin Veasley of the NVA, surgery eventually reduced her pain by about 80 percent, but only after seven years of everything else -- topical and oral pain medications, diet modification, etc. -- failed or made matters worse. At one point she almost dropped out of college, not because of the pain, but because of the pain killers. "I couldn't sit through class because the meds knocked me out," says Veasley, now 28. Highly specialized physical therapy has proven, in some cases, to be an effective and welcome alternative to treatments involving knives or drugs. Dr. Howard Glazer, a clinical psychologist and clinical associate professor in obstetrics and gynecology at Cornell University Medical College/New York Presbyterian Hospital, uses surface electromyography -- the same technology used in electrocardiograms -- to read the "electrical signature" of the pelvic floor muscle with a device like a little metal tampon. Once he is able to interpret a particular muscle abnormality, he can work with the patient on extremely precise inner exercises to correct it -- which, he says, leads to pain relief in 80 percent of his clients. Call it very personal training: These are subtle and specific movements, says Glazer, not just the "kegel" exercises forever enshrined in women's magazines. Along similar lines, electrical stimulation that relaxes and strengthens the pelvic-floor muscles has really worked for Leslie. "My muscles in that area are always tense, like a fist that's always clenched," she says. She has an at-home electrical device that she's supposed to use for 20 minutes a day (and, she says, an "amazing" physical therapist -- trained by Dr. Stewart -- who yells at her weekly for not using it enough). "It's a little probe that you insert vaginally, and it gives off a current for about 10 seconds, then nothing for 10 seconds, then current for 10, etc.," she says. "I saw something similar in the 'Jackass' movie -- I think Steve-O attached it to his balls." Even though treatment techniques have expanded and improved, fundamental misunderstandings and misguided, incomplete approaches persist. "It's not a gynecological disorder, it's a pain disorder," says Glazer. Sure, vulvodynia shows up below the belt, but it has more in common physiologically with pain syndromes than with other genital problems. In fact, Phyllis Mate got relief only when she finally consulted a pain specialist. "He knew nothing about vulvodynia, but he knew something about pain," she says. He recommended a cortisone and lidocaine injection that would anesthetize her pudendal nerve. The procedure reduced the pain by half, she says. She then started on the anticonvulsant medication that she's been taking for the past 12 years. Mate got lucky, apparently. Usually, when it comes to vulvodynia, "The pain management people have never heard of it," says Stewart. So when it comes to funding and other attention from the medical establishment, vulvodynia can get lost in the shuffle. At the National Institutes of Health, it's currently categorized with Child Health and Human Development, which does include women's health research, but which also leaves vulvodynia to compete for attention with everything from autism to teen pregnancy. The National Vulvodynia Association is working to support the National Pain Care Policy Act of 2003, which would establish a National Center for Pain and Palliative Care Research at the NIH. "There's no central institute that funds pain disorders," says Veasley. "This would be favorable for all pain conditions that aren't getting enough attention." The act was referred to a House subcommittee in May, and on Aug. 5, Sens. Tom Harkin and Russell Feingold participated in a congressional briefing to make the case for drastically increased funding for the study of vulvodynia. Physicians must also remember that when it comes to chronic pain -- especially the most traumatic kinds in the most sensitive areas -- some of the pain becomes psychological. "The people I see have not been helped by a variety of treatments with a variety of practitioners and they're very demoralized. By the time they come to me, they've got several things going on, not the least of which is the pain," says Dr. Leonore Tiefer, a clinical associate professor of psychiatry at the NYU School of Medicine who treats vulvodynia patients -- and often, their sexual partners -- in her psychology practice. Sometimes the pain can mess with your head even after it's gone. "Women come to me pissed off at the world," says Glazer. "And at the outcome of treatment, when they report little to no pain, they may also report little to no sex. As a means of coping, these women have buried their libido, have redefined themselves as asexual. Only in the past few years have we begun to look at sexual rehabilitation as part of their treatment." Both he and Teifer work to reintroduce patients to their sexual selves, to warm them up to be active again. Leslie credits her psychologist with getting her to recommit to addressing the pain in the first place. "I had gone radio silent on the whole thing, hopeless. I decided I was just not gonna talk about that part of my life," she says. "I got very discouraged. I felt like I was taking all these drugs, using all these creams, schlepping down to Philadelphia all the time [to see a specialist], and nothing was working. I didn't want to deal with it anymore," she says -- not even in therapy. When talking about being single, Leslie recalls, "My therapist would say, 'But you're attractive and fun,' and I'd say, 'I think it's about my mom.' Finally I said, 'Well, there is this one thing ...,' and he was, like, 'You've gotta be fucking kidding me. You have to take care of this.' He pushed me until I did." After over 10 years of trying -- and not -- Leslie has finally succeeded in controlling the pain with a combination of neurological pharmaceuticals (again, for pain), loose clothing, and physical therapy. Leslie is now back to dating and having sex. For her, the reacquaintance has been welcome, and the incidental or anticipated -- but mostly bearable -- pain worth it. "I didn't resist going back to sex," she says, "though it is something I'm thinking about when I'm on a date with someone I like. In those situations I'm always thinking, Will it hurt? As a result, I tend to use alcohol as a bit of a crutch, not only because it numbs the pain significantly, but also because it reduces my general skittishness." She's found that she's able to talk about her condition with men, who have been "wonderfully understanding," and, more important, with women. "I recently talked to a woman [with vulvodynia] who was really discouraged," she says. "I sat her down and said, 'You're not alone.'" About the writerLynn Harris is a writer and comedian based in Brooklyn. She is co-creator of the website BreakupGirl.net Related storiesMedical gender warsFirst came the whining feminists. Next, the inevitable male backlash. Health research has become a casualty of the battle between the sexes.By Cathy Young09/20/00 "A razor in my bladder"Interstitial cystitis causes excruciating pain -- but some doctors deny it even exists.By Nancy Evans04/26/99
CommentTo Candi - I wrote you about the bladder infection, I keep getting them and I refuse to go on antibiotics; I was told about colloidal silver, and it cleared it right up. But don't get anything less than 50ppm, anything less is useless. I also found this ointment at a horse show, of all places. It's got comfrey, calendula,plantain,goldenseal root, oil of lavender, and vitamin in an olive oil base. Doesn't cure it, obviously, but has cut my pain by about 20%. Is Wendy gone from here? I would love to talk to her, seems we live close to each other.
CommentCAT - Chlorine in the water kills your good bacteria from your body. This can lead to yeast problems.
CommentI have to agree with Candi on the whole NOT using soap down there at all!! I used to take two baths a day and wash the hell out of my vagania! Always worried about the smell. Since I have been trying Wendy's advice I have stopped baths all together and only rinse with water. I have to say that I no longer have a bad smell down there at all!! I really think the soap can cause bacteria to grow which can caus the unpleasant oder!! Gee........what a way to have to figure that out!! I have to say it's been exactly 2 months since I started this new protocal which consists of the following:1. GSE all during the day in my water2. 1 Olive leaf extract and a probotic pill in the morning3. 1 Olive leaf extact and a probotic pill in the evening along with 4 calicum citrate with magsensum pills4. One tablespoon of an oil called (Woman's Oil) in the evening which is an omega fatty acid along with a soy free compound to naturally balance hormone levels in females.5. A small amount of Estrace inserted vaginally and a small amount of the cream applied topically at night before I go to bed. 6. Low oxolate and low sugar & carb diet (OK, I cheat once in a while) so sue me!!7. Chiropractic adjustments for my lower back on a regular basis, which I am sure is a contributing factor since I have had two car accidents in the past 7 yrs which damaged my mid and lower back. I am a firm believer that for some of us with vv, nerve damage can be a contributing factor.So, with all that said I am very happy to say that as I type this message I feel about 80% better!!! It's a miracle! What can I say? I have to beleive that what I am doing is helping! Just wanted to let everyone know I think I have found what is going to work for me, and after over 8 years of this "bull shit" it's about time! No doctor I have seen during that time was able to treat me or do anything for me at all! I really hope that this message will inspire some of you to try and find what will work for you, the key is to stick with it for a while. Nothing is going to work overnight!
CommentI have to agree with Candi on the whole NOT using soap down there at all!! I used to take two baths a day and wash the hell out of my vagania! Always worried about the smell. Since I have been trying Wendy's advice I have stopped baths all together and only rinse with water. I have to say that I no longer have a bad smell down there at all!! I really think the soap can cause bacteria to grow which can caus the unpleasant oder!! Gee........what a way to have to figure that out!! I have to say it's been exactly 2 months since I started this new protocal which consists of the following:1. GSE all during the day in my water2. 1 Olive leaf extract and a probotic pill in the morning3. 1 Olive leaf extact and a probotic pill in the evening along with 4 calicum citrate with magsensum pills4. One tablespoon of an oil called (Woman's Oil) in the evening which is an omega fatty acid along with a soy free compound to naturally balance hormone levels in females.5. A small amount of Estrace inserted vaginally and a small amount of the cream applied topically at night before I go to bed. 6. Low oxolate and low sugar & carb diet (OK, I cheat once in a while) so sue me!!7. Chiropractic adjustments for my lower back on a regular basis, which I am sure is a contributing factor since I have had two car accidents in the past 7 yrs which damaged my mid and lower back. I am a firm believer that for some of us with vv, nerve damage can be a contributing factor.So, with all that said I am very happy to say that as I type this message I feel about 80% better!!! It's a miracle! What can I say? I have to beleive that what I am doing is helping! Just wanted to let everyone know I think I have found what is going to work for me, and after over 8 years of this "bull shit" it's about time! No doctor I have seen during that time was able to treat me or do anything for me at all! I really hope that this message will inspire some of you to try and find what will work for you, the key is to stick with it for a while. Nothing is going to work overnight!
CommentDonna-thank you. Somehow my e-mails got deleted and I had read it very quickly and couldnt remember the e-mail address it was from. I keep hearing alot about colloidal silver lately for bladder infections. I didn't know what to do as I didn't want to take the antibiotics. I was on my last one the day of your e-mail. :o(Wendy actually called me a little bit ago and I wasn't in. They have been doing some back and forth from old town to new adn she is so busy. I'll be calling her back soon. Shes such a sweetheart. I'll check adn see when she will be back online.
CommentSu-That's so great! I felt so guilty when I heard Wendy on my machine. I've been under a ton of stress the past 2 months and haven't been watching my health so much. I was doing really great with the diet and supplements adn only cheated once a week with a cookie or some vanilla ice cream (which vanilla ice cream is ok in the low oxalate cookbook) Then I got a bladder infection and have just been grumpy and not sticking to what I know I should. I met a woman named Suzette who is a fellow member of the VPF adn she also thinks I may have FMS. She is doing the guai protocol and is a ton better, when the FMS is treated so is the v.v. SHe also wants me to look into my other symptoms as being FM, it would make sense though becasue of all of my other pains. I just thought it was my waterbed, but then after getting rid of it and the pain remains and sometimes is so awful I cry, I think I may truely have the big F. I get the frequent tension headaches and fatigue and TMJ and joint adn tendon pains. I'm too young for this!!!!!! It's true what my mom said, it's all downhill from 30. :o)It's too bad that the women that get well disappear instead of sticking aroud for advise. But hey, who doesnt want to forget about this pain. It sucks!
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CommentDoes anyone know of any support groups or clubs i can join for vulvoynia?
CommentMy turn. I am newly 40, and have just been diagnosed. I went to nutritionist three days ago to be put on a low oxalate diet. I, too, am on the Amitryptaline (sic?) and have creams that I rarely use- only on extreme days. (Estrace and Clobetasol)I have a question. Does anyone else have a salt craving? I don't mean a LIKE of salt, but an actual craving? To the point of shaking salt on your tongue a few times a day? The nutritionist is going to send me to an endocrinologist because she seems to think it could be hormonal. I'm wondering if this is familiar to anyone.Any idea if a high salt diet has an effect on this disease?Thanks for this site and all of your help!Christine
CommentDoes anyone think that if u have a high count of white blood cells in your discharge, that it causes pain? whenever i go to the gyno she tells me i have inflimmation and a large count of white blood cells.
CommentTHP-A high blood cell count MAY very well cause vulvar problems. I was just sent by my new doc to have some more blood work done that none of the other incompetent doctors I've been to had done and one of the things she had checked were my red and white blood cell counts. You can tell alot by that. Mine were normal though. I dont know if there is anything to help with that, as I am not overly farmiliar.
CommentFor Christine: A salt craving signals a possible thyroid problem (maybe hypothyroisism). Trust me, I have it! It may be lack of iodine ergo a thyroid. Too much salt dehydrates and aggravtes v.v., be careful! laurel
CommentHi all. I am 22 yrs old and live in Australia. I am currently under the treatment of Dr Reid and Marek Jantos. I have generally had great success with biofeedback therapy - although i seem to regress after incidences of stress in my life, which is very frustrating. I have had 3 operations - 1 to remove excess mucus glands, which worked wonders, and the other 2 were CO2 flash pump lasering to try and remove the angry blood vessles around the vestibulus. These operations i have felt no difference with. The doctors recommendation is that i have my Bartholin's glands removed. I am extremely apprehensive to have invasive surgery. Has anyone had this surgery? What are the effects (in terms of lubrication ability afterwards)? Did it work? I have had vulvodynia for 4 and a half years now :(
CommentTo Clare: If you do not get an answer to your questions please start reading past guestbooks. Many others have been pressured into various surgeries promising relief from pain. Removal of the vestibular glands is also very popular with the doctors. Don't get pressured into surgery, there are no guarantees and you may have more problems.
CommentClare-I agree with the post above. I was told by a specialist NOT to even consider it. Research and join other sites and groups. I read and post on Yahoo Groups VulvarDisordersI have not talked to one single woman who was pleased with the surgery. There is something causing this and sometimes when the gland is removed the pain moves to other parts of the vulva. Parts which cant be removed. I have pain from the clitoris all the way down. Read the Vulvar Pain Foundations site. I just became a member and received alot of great information from them and have been miling it to others as well. Surgery and injections are temporary fixes and when the skin is sutured to other skin, sutures can come undone. The specialist I went to told me a few horror stories and if you think about it, his discouraging it is a loss of money for him so it CAN'T be so good. Plus I heard the pain is just awful.Do some research on your own before deciding that way out. Because you are letting someone pretty much deform your vulva as far as I'm concerned just to take a chance. It's not a sure thing hun, plain and simple.
CommentHi,I've been suffering with vestibulitis for over 2 years. I'm finding the recent discussion about bacterial infections really interesting. I also had 8 months of bv before my onset of vv. Question... I've heard a lot about grapefruit seed extract for yeast. Can it help with bacteria also? What about olive leaf? Also, I'm on the guaifenisen protocol and it's not helping me. I've given it about 7 months. But I have corresponded with women who were helped by it. I think it's worth a shot if you have any fibro symptoms (I did). It's explained well in Dr. St. Amand's book "What Your Doctor May Not Tell You About Fibromyalgia." While you're on guai you have to stay away from herbs and plant extracts in topicals (like make-up) and supplements. That's hard. If I do go off guai, I want to consider a natural approach to fighting bv.Lia
CommentHi Just been reading the vulvodynia web site. It makes me realise how far I've come and how not alone I am, and yet how alone many of us are with no doctor support or understanding.I have had swelling. Now abated with severe treatment after just over a year. Had it much earlier in life too for many years, so my research and action was much more aggressive this time around. I write anyway just in case for the gentleman who wrote in '00. So related to your wifes case - no sleep, no abatement from pain and so forth. I so hope your wife is feeling a little better. Here's what I did to grab a few hours sleep. Slept with ice wrapped in a cloth over the affected area. Used an eczema cream from my naturopath with albizzia, calendula and myrhh - sometimes forced to combine this with a cortisone cream. A bath with One tablespoon, soda crystals, one tbs sea salt, one tbs epsom salts and a few drops of tea tree oil. Another remedy that sometimes worked was a sanitary towel ( I have handmade ones from a New Zealand company washed in soda crystals only) soaked in a seasalt solution. I also used the aneasthetic gel - is it Lignocaine in your country - forget what it's called here. Long termI have had all the mercury out of my teeth and a major detox to remove the heavy metal, live on a low carb diet, don't drink, smoke, alcohol, caffeine or do sugar and had to give up high stress work and working late nights. I did do low oxalate for a while, but mainly get away with the occasional high oxalate food now, due to my discovering Calcium citrate which works brilliantly for me and gave me a home business to boot! I wish her so well. I can now wear undergarments and occasionally trousers, sleep most nights, go to the gym (not bad for someone who couldn't walk at all) and am now working part time again. My husband has been a tower of strength whilst I went through the detox and major diet change, and I wish you both so much love in your pathway to wellness. My first husband was not, and it makes such a difference. Go well
CommentLia-I have read that you may have to up your intake of Guai until you find your point of pain reduction. Just a thought.
CommentHi everyoneits been a while since i last posted & im feeling a lot better. Ive been on Amitryptaline now for 3mths & am now taking 100mg a night. Finally its working.Ive been upping my own doses. didnt take the doctors advise of taking 2 tablets for 2mths! there was no point waiting for nothing. After the horrible side affects - feeling very hot & cold all the time - its now stopped. Im really noticing a difference. The pain feels alot better & im now able to lubricate myself where as before i couldnt which was really getting me down. Ive been using aveeno in bath twice a week & showering the rest of the week. Ive also been using aquaous creams & E45. Im back to Paddington hospital in a couple of weeks. At the workshop i attended last month was very intresting & so glad to know im not alone. good luck to everyone! theres hope for us all.
CommentThere was some discussion before about B vitamins after someone posted about her feeling better after taking a B. It was questioned as to which B she was taking, but she never came back on. I was reading through my VPF things a few days ago, and Dr. Solomons recommends taking B-Complex as well as DRY E. Never heard of dry E myself. I also have been haivng some irritation on my lips for the past few days they are dry adn burning so I was looking up the best thing to use , besides chapstick, I hate the waxy feeling, and it said that chapped lips can be caused by a lack of B-Complex. Mine arent chapped really, just raw right where the top lip touches the bottom plus I have a habit of biting my bottom lip. I'll be getting B-Complex the next time I go to the store. Just thought I'd let everyoe who was wondering about the B vitamins know what I found. Just don't get it in a yeast base.
CommentTo Candi: I've been taking dry vitamin E for years. The brand I use is Twinlab, "Super E Caps Plus Selenium". For anyone interseted there are two different kiinds of vitamin E one is d-alpha tocopheryl which is natural and the other is syntheticdl-alpha tocopheryl, they are supposed to be the same but I use the natural one. Some people who don't tolerate oils and fats do better with the dry vitamin E.
CommentI believe it is Twinlab that the VPF recommends for vitamins as well. I always thought vit E came only as oil. Why Dry over oil? Whats the difference?
CommentTo Candi: My understanding is that there is no difference between the two in terms of benefit to the body. Both are fat soluable in the body. Some people probably have a problem with oils, digestion, etc so it is offered in the dry form. Selenium is a trace element that works with vitamin E , do not exceed 200 mcg of selenium. Vitamin E however is supposed to be relatively harmless even in high doses. I think the average dose is 200 to 400 IU.
Commentive read about calcium citrate tablets- does anyone know where i can get these in england? & what dosage to take? can you get these from a chemist? thankyou X
CommentVVS and LP sufferers!Hello, I am a 23-year-old girl from Finland. I am suffering not only of VVS (for 9 months now) but most likely also of LP (Vaginal Lichen Planus). I get very severe stinging and itching waves, and the entire inner vulvar area is sore and bright red. I have lost the outer skin layer of the inner labia, and, thus, the skin is very thin and sensitive (I can not even slightly touch that part). I am so scared, humiliated and in pain that I am sometimes even scared to go outside from my home. Is there anyone who has both of those deseases? Please write to me or to this website all of you who share the pain with me. Best, Marjaana
CommentAbout specialists not taking insurance: I disagree that it?s because ?take advantage of those who are suffering in pain.? Doctors who are in-network with insurance providers must conform to rules those providers set regarding time spent with the patient and treatment. Many doctors won?t accept these constraints on their practice. The best doctors I have seen have been out of network with all insurance companies; they both spent 4-plus hours with me and did exhaustive testing which revealed problems no other doctor caught. Thank god doctors like this exist.
CommentJAYNE- im not sure what stores u can get them at, but i know u can order them over the computer. maybe drugstore.com has them, u can check
CommentI have had VV for over 5 years and feel it started from the on slaught of antibiotics. I have also had a bladder that all you had to do was look at it and I got an infection. Well about three months ago after trying doctors, antidepressants, biopsies to see if I had some veneral disease. I have also been to a natural path and spent lots of money there as well as use no perfume soaps. No fabric softeners, no bleach and no sex, except for painful sex. I went to an acupuncturist. He is not just any Chinese doctor. He is also a herbologist. I was quite certain it would never work. But since I was desperate I have tired everything else what did I have to lose. I kept my cyncial attitude going just incase it didn't work so I would not be disappointed. Well, I am here to tell you that I am better, noteable better. Not just a little but enough that I can have intercourse with my husband. Not with free abandonment but it doesn't hurt like it did and it is getting better. I think the cure is from the herbs and the needles too. But the herbs are the biggest thing. So ladies find a wonderful Chinese doctor make sure he makes his own tea and drink away. I know it will help. The tea tastes terrible but I don't care. I will drink anything to be free from pain.Best to you and if you need some more info please email me at my address. As I will forget to check here and I would hate to have someone out there that had a question and it went unanswered and they continued to suffer. You have nothing to lose. Best wishes Lyn j
CommentHi Lyn its really interesting to hear you say you have had positive improvements from acupunture and herb. I also have had the only real improvements in my health and vulvodyina when I was seeing an herbalist/acupuncturist.When my first chinese doctor left I went to several others which I didn't get at all the impovements that I did from the first and finally some years later I found another doctor who was really good and my vulvodynia went away but then later when I wanted the same formula again he forgot to write it down so what he gave me didn't work as well and then I started getting the problems again.So its been frustrating to say the least to know that you could be well but you don't seem to get the right thing always.Recently though I have been taking some Chinese pills on my own and that has really turned my health around alot. Whats funny also is that the herbal pills I buy are a good brand but the other day I was lazy and went to a health food store near me and bought the same formula but a different brand I could taste the pills didn't seem as strong and sure enough I started not feeling so great so I ran to get the herbs I usally do and doubled my dose and by that evening I was already feeling much better so herbal quality matters alot also. I wanted to tell you that if you found someone good like your doctor stick with them becuase trust me Ive been to alot of chinese doctors and I even have some friends that are herbalist/acupunturists and alot of them aren't that good. Its best if you can find one from word of mouth.Well best of luck I hope everything keeps going well for you.Baukti
CommentTo J.S.: You are fortunate to have a good experience with "Experts". The one I saw in CT. Charged $300.00 for a half hour visit and resolved nothing. I have read on this site of other women spending close to $900.00 for a visit in Manhattan. I believe many of these doctors are indeed taking advantage of a desperate situation, there is no need to charge that much money other than GREED!!!
Commenti cant go a week without getting a bacterial or yeast infection! ive been taking grapefruit seed extract, oliveleaf, acidopholis, vitamin B, probiotic.......AND NOTHING HELPS ME!!!! ugh i dont no what to do with myself anymore. I never use soap when i wash myself and if i do i make sure its hypoallergenic. I used hypoallergenic laundry detergant and i dont have sex. what is wrong with my body, im so scared!!!!!i also watch what i eat, i try to follow a low oxalate diet and an anti-yeast diet.......what else can i possibly do?
CommentTo THP, Wow I feel your pain..... I haven't been on in a while so its takes me awhile to catch up but I feel so bad for you. Calm down and hang in there. I think I read way back that you are on the pill. Because of a three month period and hair growth? That right there sounds like a hormone problem. I would get off that pill and get your hormones tested. It doesn't matter that you're so young. The pill can cause yeast and then if theres not enough estrogen in the pill that you are taking it causing dryness in the vagina and then sets you up for bacteria and yeast. The doctor put you on the pill because for some reason you were having a three month period because your hormones were off. If you did go off the pill sometimes it can take three months or more for your body to get back to normal. Young women can have hormone problems also. Get a baseline estrogen. progestone and just see where your estrogen level is. Thats if you are sure its not a std and you've tried everything else, what have you got to lose? Demand it from your doc! I know, I had the same thing and I about went crazy until I went on some compounded natural estrogen and progesterone and all my yeast and bacteria went away. My vagina was dried up and need that estrogen that my body wasn't giving it. I am 44 but it started after I got a bacterial infection and then constant yeast. I had no clue wha estrogen can do for your body until I researched it for two years and am feeling soooo much better, Just slight irritation before my period and then I also use my compounded Estrace cream. I'm so sorry to hear of your pain and hang in there hon, it will get better. Lynnze
CommentTo THP: No doubt you are very frustrated and with good cause. Have you tried a course of boric acid suppositiories. Maybe you need to force your vagina to be acidic for a few weeks by using this method. Sounds like you have covered many of the common sources of reinfection. Have you had your blood sugar levels checked, how is your general health? Sometimes other illnesses contribute to the reoccurence of infection. Best of luck.....
CommentTo THP,Not sure whether this will help but i also suffered infection after infection for the best part of 3 years. My GP's would put me on topical creams and tablets etc and i would be fine while i was on them and then worse when i finished them. I was diagnosed with thrush and gardnarella so many times i thought i was keeping Canesten in business! When i started going to see Dr. Reid he began trying to treat the infections and after a few months he found that the cause of them was excessive mucus glands on my cervix - i had about 3 times the normal ammount and that was causing a very unhealthy environment. I had a day surgery operation to have the excess ones lasered off - sounds painful but it is a yellow laser so it never breaks the skin - it just stung a little for a day or two. I havn't had an infection since and that was over 18 months ago. Apparantly it is really hard for doctors to see past the infection to the underlying cause. Hope this helps.
CommentTHP-Sweetie you just started taking those things. They are NATURAL and they take TIME. I know from someone who had the same problem that it will not work overnight. It's frusterating I know, but you have to be more determined than the infection!All women are different, but it helped my friend and others she told about it all and it is just going to take time before it will work. Go and talk to someone at your health food sotre and see about things you can use to cleans your system. Just make sure the person you talk to knows what they are talking about. I did a candida cleans myself and I don't have a problem with vaginal yeast. I agree with Lynnze about the BC's but I told you that already. They maynot be the right ones for you also if you were having abnormal periods you should definately have your hormones checked. Your doctor pretty much has to test you for whatever you want to be tested for. Its your money not his/hers and itsYOUR body.
CommentTHP-I just posted on another site for you to see if anyone knew of anything else you may try. Just remember, you have just started the GSE, OliveLeaf adn probiotic. Herbs take alot longer than chemical drugs, but in the long run your body will be healthier for feeding it things that are natural. I will let you know as soon as I get a response from those ladies. I started on Estrace cream at the same time you started the above items. I am not bette. HAd 3 great days but am back to a flare adn cheated on my diet last night and ate ketchup. It is determination and time that will heal.
Commentthp look into colloidal silver. It might help.
CommentTHP-Someone sent this to me today for youI always love this site:http://www.gentlebirth.org/archives/vagInfections.html#VaginosisIt's a group of midwives giving their "cures" for infections for their pregnant patients. They are usually natural cures so it works for everyone. Don't let the talk of pregnancy throw you off.Good luck!Lynn
CommentSu here, it's been about 10 days since I posted and have to say I continue to get better!! I agree with Candi that the herbal approach takes time, but in the long run is worth it! I have come to the conclusion that Estrace cream is a key for most of us. For everyone who has used BC's, regardless of your age, they cause hormone imbalances, they aren't natural for your body. You put that together with antibiotics, yeast and/or bacterial infections, foods high in oxolates and you now have vv! It't now been about 3 months since I have been taking the GFS extract, olive leaf, a probiatic, Calcium citrate with magnese, and using the estrace cream. I can totally relate to the young lady who just posted that the skin on her inner labia lips was peeling off. The same thing happened to me!! The skin was all white and raw!! My inner clitoris was all red and hurt like hell! I just stuck with the program which included douching with the GFS extract several times a week. You can't believe the stuff that was coming out of me! It was this thick green stuff! I called Wendy and she said that it most likely yeast and other infections cleansing itself. The roller coaster ride has not been easy, but I can now sleep throuhg the night without waking up in pain, work full time, and actaully be nice to my husband and family! ( I still haven't tried to have sex, am worried it will bring it all back on!). I know how frustrating this is for everyone. Not knowing the exact combination of what will work for you, how long to try something before giving up and trying something new....I just want to give all of you my support and tell you to hang in there. I really believe that the first step for everyone is to take the GFE extract and Olive which will help your body get rid of any yeast and other infections. From there add the estrace cream which will help re-build healthy vaginal tissue. Any sign of raw or peeling skin is a sign of weak tissue which most likely can only be repaired with a hormone cream of some sort.
Commentguys thanks so much for the responses i am really impressed and thankful...first off..candi ur right i just started the GSE and oliveleaf...thanks for the post on the other website. I heard about boric acid , i just dont feel so safe inserting something into my vagina everyday, and i dont no what will make my vestibulitis worse. but i guess i have to experiment. Is topical cream a steroid cream? cause my doctor said it will make my hair growth worse. I got some hormone tests done in the past but they all came back negetive. I had a low blood sugar problem cause i was eating to much sugar at a point and then my blood sugar crashed..but thats fixed, i eat healthy now. Thanks for that link and what is COLLOIDAL SILVER? I dont no what i would do without this site, i feel like i have so much support and girls that understand what im going through!
CommentTHP-You mentioned eating alot of sugar. I have always been told by my mother that a lack of protein can make you r hair fall out. I used to be anorexic and instead of eating unhealthy, I didn't eat at all. My hair was very thin at that time. Diet plys a role in our lives more than we know. Su-E-mail me when you get a chance ok? I can't seem to find your e-mail addy.My AOL stuff is a mess and I haven't had time to organize yet. Thanks hun! And I am really happy that you are feeling so much better! Wendy is awesome!
CommentLynnze u mention that if theres not enough estrogen in the BC pill that it can cause vaginal dryness....i have vaginal dryness alot, can it be from the pill?
CommentHi guys me again. I noticed a few of you were mentioning problems with labia skin rawness and peeling. I too had this at one stage and it turned out i had an alergy to an antibiotic in certain creams called Neomycin. Might be worth a check of any creams, antibiotics etc that any of you are on for this drug. I researched it and its quite a common allergy for people with pre existing sensitivities (man i can't spell ..hee hee).
CommentClare-Thank you! I have felt like such a freak for SO long because whenever I asked if anyone else had this problem noone else had. Everything makes me peel now. Since June anyways. At the beginning of all of this I was ok when I tried to use creams etc.I am using Estrace cream now and am not sure it had that thing in it you mentioned. I wont try to spell it heheheI'll look and see. Its not an antibiotic cream though. I was thinking it was either the propylene glycol of the alcohol
CommentTHP-More advise from other ladies for yor bacteria, also I mentioned your BC pills before. Low estrogen can cause drying. Either stop taking them for awhile or try to get one higher in estrogen. Ortho Tri Cyclen, Tri Cyclen and Ortho Novum 777 are good estrogen ones.I use ortho tri------------------------------------------ There were 2 people whose advise was the colloidal silverMaybe she should try Colloidal Silver for 10 days. It acts as an antibiotic. Get one that's broken down the most and follow the instructions on the bottle. Available in health food stores. It cured a urinary tract infection, maybe it will work for bacterial vaginosis too.Lynne (NJ)
CommentFor anyone who has e-mailed me this week adn i havent gotten back to you yet, I will tomorrow I promise. Things have been crazy at home and I am so forgetful. Does alzheimers come along with v.v.?
CommentI was told by my vulvodynia specialist that should go to a dermatologists that specializes in the vulva since yeast or infections may not be the problem. My burning has improved but the itching and discharge had become worse the past 4 months. Can anyone please tell me of a good vulva specialist in Texas, preferably West or Central Texas? I would be willing to go as far as Houston, but since I live in West Texas, going to a good doctor closer to me would be more convenient. Please, help for I know of no one and I fear doctor's treatment of me since this all happened-some don't really care. Thank you, Sharon
CommentTHP, Yes the pill will cause dryness. Lots of those have high progestrone and low estrogen. Try to ge a pill with more equal amounts. Don't ever gp on the Depro shot either, I''ve heard horror stories about that shot as it is all progestrone and no estogen. Candi, Hi... seen you post with Dee on Yahoo vulvar disorders board...isn't she wonderful? I swear she knows more that a doctor...she saved me from going crazy. I never posted there but read everything she wrote. Are you going to get the compounded estrace cream? Its the propylene glycol that burns some women in the regular estrace cream, I use my compounded cream and it feels wonderful but took me a year to get the burning gone. I read that web site on bacteria infections and it was so informative... great site thanks! Good Luck to all of you! Oh, I wnated to say that when I first got this, two years ago, that I went to Vulvar specialist. She was well known in Michigan, but ran tests and cultures and then there was nothing and she just wrote me out a script for elivil. I felt like a zombie on it, a burning zombie so I quit. She never once mentioned the estace cream or hormones. Feel like writing her a letter and telling her how much better I'm doing without the elivil. I know it helpd some but just couldn't handle it. Good luck to all of you and don't give up!!
CommentCandi- about that link that u posted to me,,,,its says to douche with hydrogen peroxide.....i would be scared to try that, it doesnt sound so safe. Have u tried that?
CommentWhat is GFS extract and what is it sappose to do and how do you use it?
CommentTHP- I think you mix it with water, but I will look to make sure. I have heard of plenty of women that have done that. I think our bodies produce somehting like that naturally. It wont hurt. Ive douched with vinegar before. Ill look real quick and see how its done an dwhy exactly. I dont think it will hurt at all!here are some sites: I have heard about this for years! Pay attention to the strength tho!!!!!!!!http://www.h2o2-4u.com/house.htmlhttp://www.oxygentherapies.com/id6.htmThis is a good article: http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml
CommentGSE is Grapefruit seed extract, I buy the drops by nutrabiotics Here is the site wiht all of the benefits:http://www.nutriteam.com/index2.html
CommentHello everyone, It has been a really long time since I have posted or read any of the guestbooks. I had pretty much just given up being cured. I just figured I would just work around my pain. I have vestibulitis, pain with sex only. Which is horrible, but I feel lucky in a way after reading about all the women that suffer every minute of every day. I can choose not to be in pain by not having sex, not a choice I like to make but it's an option, of course my husband has been supportive but it still take a toll on your relationship. Anyway, I really just had a question for those of you that have tried acupuncture. How does it work? Do they stick the needles in the vaginal area. Do you tell them this is where the pain is located?Please advise because I think I might try this.Luck to all & thanks for the support.Stephanie
CommentCandi- i read what u linked and it sounds safe. I wil try it. i just remember hearing that its so bad to douche and you should never do it. I also heard that ur vagina gets used to you douching so it stops cleaning itself!! i duno if thats true or what.
CommentTHP-You should only do this everyday for a week and then maybe once or twice a week. It is not good to douche regularly. When you go to the doctor they tell you not to as when you squeeze water up in ther it can push infection further up. I read about a year ago that you should, if douching, use a bulb syringe. One of those things you suck boogers out of a babys nose with. It is not as long as the thing on a douche bag that you insert adn to also squeeze very gently. I am not saying to douche, it is your own preference. I am just passing on what others sent me when I asked for you and info I have read. I douched with vinegar mixed with water when I had BV, ir thought I had it. I just followed what I read and only did it for 2 weeks. You dont want to wash away your natural libricants. And it can irritate you if you do it often. I also did it standing up in the tub so it would all run out right away. I would try to just use as many oral things as possible, natural things of course. But I talk to many women who do a douche of some sort every now and then with natural things like GSE and hydrogen perixide. It is always YOUR decision.
CommentSTEPHANIE- I have been wondering the same thing and just never asked or looked it up. Here is a site I just found with a diagram of points. I think I'll pring it and keep it with my info just in case. If you DO do the acpuncture, post and let us know if it helps. I know people that swear by this for other ailments that have tried everything else out there. GOOD LUCK!
CommentWHOOPS I forgot to post the link http://www.acupuncturetoday.com/archives2001/jul/07vestibulitis.html
CommentHello,Has anyone been treated with Dr. Glazer's EMG protocol for dyesthetic vulvodynia? He has a study that claims great results for my type of pain and I would love to hear from ANYONE who had this treatment. The NVA site lists him as a resource and I am contacting them with the same questions. Perhaps Dr. Glazer reviews this guestbook for questions and I would love to hear from him or some one on his staff. Thank you anyone who responds with information.I have had this condition for 4 years and have tried many, many remedies.Thank you,Jean
CommentHi everyone,Have not posted for a few weeks, last time i did i was almost better apart from a lump which i was supposed to get removed as mu gynae thought it was a bartholins gland cyst. Went for surgery on the friday to find out my gynae was off , another one was standing in for her, she said she could not feel much but was really rough with me and said it could be scar tissue, i thought this strange as i had an episiotomy 11 years ago, she said she would have a go but it might make things worse. I got out of there quick. I did not trust her. I will have to make another appointment when my other lady comes back. Since that day i have been in a lot of pain. Also i seem to be having problems with my bladder now, i am up during the night 2-3 times, and it is not comfortable i cannot explain the feeling, it is like a stinginess. Has anyone got any idea what i can take for this. I would really appreciate any advice. Also i have found a great way of disguising the taste of grapefruit seed extract, i have found that if you add it to herbal peppermint tea you can hardly taste it.Love donnaxxxx
CommentTo Donna M: If you have been reading this site for a while you know my wife's story of recurrent tear and the failed surgery to correct it. Her thinning skin is right where her episitomies were done. She had no problem for years, then started to have this thinning and tearing problem. I think you did a very smart thing to get out of there. My wife also gets bladder infections and it's possible that is what you are feeling. We had sex for the first time in over a week several days ago and she got a bladder infection. She is taking Macrobicid to get rid of it. I've pleaded with her to use gse and cranberry juice extract in the form of tablets to prevent these reoccuring infections but she just is not into supplements. she got a bladder infection when we went on cruise last year and the doctor onboard said the physiology of a woman makes getting a urinary tract infection very easy. So much to do to avoid these problems. I feel like she blames me for this problem but I'm doing my best to not pressure her for sex and to keep myself as clean as possible to prevent any infection when we are intimate. Best of luck with your health and treatment.
CommentDonna M- Have you been checked for bacteria in your urine? IC is something that goes hand in hand with VV for some. I have read about something for IC called Elmiron and have read from some that it works, but after a few months on it. Just be careful if it IS a UTI (stinging up there is a sign of both I do believe) that you are not on antibiotics for too long. And take preventative measures against a yeast infection starting before you take your first antibiotic.
CommentHow do you handle the sex in your relationships? For those long-suffering ones, have you made some sort of peace with it? For the new-comers to this horrible problem, just know that your relationship can stay strong, that you can be intimate, or that you can find someone to "put up" with this condition if you're not currently in a relationship (I've read many women's stories about getting married even with this condition--something I'd never have thought possible years ago when I first experienced this and thought I was the only abnormal woman in the whole world). I know sex should be the least of our worries, especially when so many are confronted with daily disruptions and pain because of vulvodynia, but it seems to be what we, as women, associate with femininity. I know that each relationship is different, and I've certainly never been in anyone else's shoes but my own, but I'm at least thankful that my husband doesn't "expect" sex from me since this condition has disrupted that aspect of our lives (by sex, I mean full intercourse--even though we are intimate quite often). We just find other ways of pleasing each other and enjoy a great relationship (of course, this all came after years of struggling with this condition and maturing, etc.). That way I don't get sore for days after, tear delicate skin, suffer from bladder infections brought on by intercourse, etc. (although that's not the way I "pay" for it, but some do). He feels that a short time of enjoyment for him (which he says he can't fully enjoy it anyway if he's constantly worried about hurting me) is not worth the days and days of suffering for me (during or) afterwards. Now, when I'm having a really good stretch of time, I DO want to try things out, and we do. But, just knowing that I don't have to do something that makes me so uncomfortable, helps me be a happier person and wife. I've enjoyed reading these guestbooks. It seems that lots of women present so differently, but does anyone have a theory to the underlying cause--what "allows" our bodies to become susceptible to things that cause our problem? Although I don't have vaginal yeast infections, I've come to the conclusion that Candida is the underlying factor, at least for me. It allowed chemical sensitivities to set in, which made me intolerant to so many things....and it affects the mucousal areas of my body--vulvo-vaginal area (intense itching, burning, stinging in regards to exposures to certain chemicals)--and throat (post nasal drip when inhaling chemical fumes). Even with avoidance (as much as anyone can in this world today), it's left me with a HIGHLY sensitive vulva (from constant tensing against pain, I also started suffering from pelvic floor problems)......I'm praying that one day, with Candida treatment, that maybe the high sensitivity can gradually be de-sensitized. I wish everyone peace.
CommentThank you Frank and Candi for advice, i have got cranberry juice extract capsules, i will start taking them everyday, i was put off them as i read that cranberries are high oxalate, not that i am following the diet, but i wandered if my waterworks where in some way connected to high oxalates, sometimes you get a bit paranoid after reading something, but i am going to give them a go. The doctor will be my absolute last resort, i have decided i am not going to my gp unless i am dying. And i would only take antibiotics if it was absolutely necessarry. Frank, it is a pity your wife wont try any natural products, maybe she has just give up. I sometimes feel that way, your whole life starts to revolve around this pain and you just want some normality , like other people, they go to the doctor and hey presto they are better. I am also lucky my partner is really understanding and it is a shame as this all started after we had only been together for a few weeks. I have got up today and i am feeling a lot better just now. I think stress makes things worse as i started a new job about five weeks ago, plus i have another two jobs it was so stressful for the first four weeks but last week i found i was coping much better. One positive thing about this horrible illness you find out if your partner really does love you, so i am a very lucky girl. Will post again after few days off cranberry extract.Love donna m xxx
CommentTo Casey: I may not know exactly how women suffering from the symptoms of vulvodynia feel but I certainly can relate to what your husband is going through. I am constantly torn between the desire to be sexual with my wife and the guilt of hurting her. We are lucky to have had years of pain free relations. Part of what really stinks about this is that I am a considerate lover and always wanted to give my wife pleasure when we were intimate, now it is a situation of how much pain I will cause. I think about this all the time and it is a no win scenerio. I go very slow and gentle and still she tears. When I ask if I hurt her she will say you did not hurt me it was the vulvodynia. I love to kiss and hug and yes there is always the thought it will lead to sex but now i'm happy to just kiss and hug the hell with the sex. Not that I don't think about it but I know what the results will be. We do argue a lot about all sorts of things as do many couples, I sometimes wonder if we argue more to avoid the closeness and possibility of sex. I miss the passion, the worry free sex, the feelings of accomplishment by having given pleasure in return during those intimate moments. I'm grateful for what we still have and I hope research will prevent others from suffering in the future. I pray my young daughters will not develop vulvodynia.
CommentFrank: Gosh, this is uncomfortable to talk about, and I almost didn't want to answer, but then I got to thinking about it.... First, I won't pretend to believe that what works for one will work for everyone, but, well, here goes...... You mention kissing and hugging leading to sex. Well, can you (for awhile--maybe a looong while) change your concept of "sex" to just not include penetration? I think it's easier for women, of course, since I think that most men think sex=penetration. I used to also....til vulvodynia entered our lives. Like you, we fought early on, mainly because we were dissatisfied with ourselves (and immature at the time) and didn't know how to handle it. The arguing helped us to avoid the intimacy, too. But, lack of intimacy is deadly to a relationship. Finally, after accepting vulvodynia (I had an "injury"--doctor induced--inside my vagina that made penetration next to impossible without great pain for several years before I had a secondary experience with vulvodynia involving sensitivity to chemical products which seemed worst to me since it affected every waking moment as opposed to "just" having pain with a particular act), anyway, we had to expand our sexual definition. Once we did that, we could be intimate again--only not in the traditional sense. Both partners CAN be satisfied and without the pain of intercourse (at least for me in the first case of VV). What's funny is that now, after many years, penetration is bearable (not good, but certainly not like it used to be), but yet we don't always choose to go that route in our intimate moments because we enjoy ourselves regardless. I think we have a much stronger relationship than most, either inspite of, or because of, this condition, although it took work to get to this point. He said it was no different than if he'd become paralyzed from the waist down and couldn't perform sexually; he said he expects we'd have adjusted to that condition just as we adjusted to the one we ended up with. You mentioned that you "go very slow and gentle and still she tears", then why do it at all? I think in your previous email you wrote something about "a week since we last had sex". Yikes! I don't know about the other ladies with this, but that sounds like too often with all the pain and tearing that goes on. Of course, everyone is different.....maybe she enjoys the actual act and doesn't mind suffering for it afterwards--I might've been that way for awhile, too, but I hurt too badly to even try it (like the vagina was glued shut), so maybe I'm mis-speaking here. Anyway, I've written enough and probably over-stepped my bounds. I apologize if I've offended you by assuming too many things in your private relationship with your wife. I wish you all the best.
CommentHi! This is my first time that I visit these kind of pages.I?m 21 years old girl from Finland. I have been suffering from vestibulitis and vaginism for about 8 years but it was diagnosed just about 4 months ago. It seems that in Finland is only one doctor that knows about these kind of deseases. This deseas has destroyed my 6 year long relationship and it has defected in many ways in my wellbeing. So all I ask is someone to talk to or to write with. Please contact me and I will be happy to tell more about my story.
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CommentCasey-Thank you for your post! I have a wonderful relationship like that as well with the man of my dreams, but there are times when I wonder if it will always be so good. Will there come a time when he can't deal with no penetration? But I can't live life worrying. I know that if he was going to find someone else who could give him just that he would have walked away a year ago. Sex doesnt = penetration and love doesnt = sex. Too many people dont know the difference. I think in the long run, our relationship will be stronger than most because we have to abstain. We find other ways to show our intimte feelings and I think that makes us better lovers. He could find someone that can give him sexually what I cant, but he wont find someone who feels for him the way I do. I make sure I do things to please him in every aspect of our rlationship. And thought we are under stress aside from all of THIS I hink all we are going through in life TOGETHER will make us a strong couple.And Frank-I wish it had only been a week since I had "normal" sex! It's been since April!!! And I did eal with some pain afterwards, but it was worth it. April was a good month. 80% better and only some irritation the next day. Donna Marie- I dont think I suggested cranberry caps, not if you have vulvodynia/vestibulitis. They are fine as long as you arent sufferning from painful vulva. Berries are high in oxalate. They are fine for people who arent suffering like we are. I used to take them all the time before this and had no problems. Now I wouldnt touch one if you paid me. I think Grapefruit seed extract and Olive leaf would be better and some have suggested Colloidal Silver, I personally h ave never tried that. But some swear by it.
CommentTo Casey & Candi: I knew I would sound like a jerk mentioning " The Week", so many women here have gone without sex for months or years. I really wanted to address the intimacy issue. I'm not old fashioned and enjoy every form of intimacy. My wife does want to have vaginal intercourse and says the tear doesn't bother her that much. She is either very brave or is forcing herself for other reasons. I'm a very open minded and out spoken guy so I welcome her honesty. A big part of my frustration is giving her sexual pleasure. There are times when her clitoris is raw or inflammed making any contact anything but pleasurable. Sorry to turn this into my frustrations I just wanted to express my thoughts so that some of the women here involved in relationships might better understand the inner thoughts of their partners. You women are suffering with physical and emotional pain and the men who really love and care about you have issues to deal with also. Certainly there is no fair balance between the two. I have also thought what if I was the one with the physical problem and it does help to put things in that kind of perspective. Sorry if I offended anyone.
CommentFrank-Has your wife had oxalate testing? Oxalates can cause the clitoris to become raw and inflammed, I KNOW! It can cause tears to the skin as well. I am starting to have some small tears around the B gland on both sides. I guess the longer the VV the more sensitive the skin becomes. From what you have said about her, she probably may not be interrested in the testing, but hey, its a thought!
CommentTo Candi: To answer your question, no she has not. With the exception of this site not one doctor has ever mentioned oxalates as a possible problem. You are right that she would not pursue this issue. I honestly do not think that after years of the same diet she is suddenly so sensitive to oxalates that just the skin in one spot of her vagina is tearing and thinning. I don't know why the raw areas appear and then go away with no change in diet. I still believe the labia shrinking have something to do with hormones. She did say one doctor tested her for lichens. Believe me I have gone over the different scenerios hundreds of times and I'm at a loss. Why can't some doctor test the affected skin and determine what is missing or what is causing the problem with the tearing in that one spot? How many different things are causing the redness, itching, etc. It is business as usual for the doctors even the Experts, prescribe several courses of antibiotics, anti yeast medicines followed by several hormone cremes then anti depressants and finally surgery of some kind or go see another doctor. What if the oxalates really are not the trigger of pain and avoiding them is not helping? I know many of you are sure they hold the key to this mystery and I hope you continue to get relief from the symptoms but what my wife is experiencing is something beyond diet for sure. I do appreciate the suggestions, that is a big part of why I still read and post. Nothing anyone has said is taken lightly, I respect the time and effort and thought that goes into all these posts. Thank you again!
CommentI have yet to go to a doctor who suggested oxalates as my problem. As a matter of fact, I just had to explain to one about calcium citrate and how it binds with the oxalates etc. I DID have one that said not to bother thinking that a low oxalate diet etc would help me, at that time I didnt even know what he was talking about. To admit that oxalates can cause vulvodynia/vestibulitis would mean having to admit that the scripts they throw out like candy for antibiotics and antifungals are the cause. How much money would be lost then?Oxalates can cause tearing, burning, iching etc. Some women have problems in just one area, then they think if they have the dreaded surgery then their problems will be gone. Too many times after the surgery skin that was never affected before then becomes effected and they are back to where they started with the horrible memory of a painful surgery to add to the mix. If something that effects the skin negatively no longer has that sin to effect, its not going to just disappear, it is going to attack somewhere else.I THINK some of my problem has to do with oxalates from too much Flagyl, but I dont know for sure. I was told i dont need my hormones checked becasue I have a period every month. I dont know about all that! I have joint pain and other symptoms of FMS as well. Whether its that or not, I dont know. As far as I know there is no test for FMS. Oxalates can cause joint pain, but I have fatigue, TMJ, back pains etc. So my next topic of discusion with the doc is whether or not she thinks I have FMS and then I go from there. The Guai treatment isnt something that thrills me since guai isnt natural, but it has been very successful. It is used for women that are having a hard time conceiving as well. So I'll stick to the diet and everything I am presently doing and just add guai if need be. I cant go for 20 years like some with this pain. With any hope at all that compny Ixion will have a breakthrough and hopefully some of us will be helped. God willing
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CommentHi guys - i hope you are all doing ok. I don't want to start a major oxolate war here but i just wanted to voice a few of my concerns about the diet. I'm no doctor (obviously!) so don't take this as an advocacy. As far as surgeons and physicians losing out on lots of money for treatments and prescriptions - i think that depends on your doctor. One of my doctors, whom i go to for biofeedback therapy, told me not to bother bout low oxalates as it has been disproven. Now he has never once tried to get me to go on medication and has actually gone out of his way several times to reduce the costs of my therapy - so i see no sinister motivation for him to dissapprove. Also - from the information i have been able to get about the diet, it seems that testing is far from extensive and they fail to take into account (or at least publish) other factors in these women that may be effecting the results - i.e How much water have they consumed in the test period? (something that would be vital in dealing with a urinary based problem). I don't deny there is a corrolation between oxalates and pain but i just believe there needs to be more thorough testing before it is embrassed. Who knows if it isn't the other way around - pain causes an increase in the body's oxolate production - much the same as stress and cortisone, and, as some suggest, the real reason some people have success is because they restrict their diet so much they actually exclude a food allergy that causes sensitivity.I'm not trying to say i have answers - i'm like the rest of you, all i have is questions. But i believe it is issues like these that cause some people apprehension about the diet. But good on all of you who are doing well on it!Oh and also...why is it that the organisation that proposed and supports this diet is the only one for vulvodynia issues that charges money for the good information... that just seems wrong.
CommentClare-Oxalates arent everyones problem. And maybe it can be related to some food allergies.They suggest introducing a new food for three days in a row to see if it causes a negative reaction. They also dont limit it to food intake, they suggest researching herbal supplements before taking them as well. Cranberries contain NO oxalates yet they are bad on the oxalate list. The diet isnt just limited to foods that are high in oxalate content. Oxalates overtake the system when certain good bacterias are killed off. Oxalobacter formigenes to be exact. Some people are sensitive to oxalates some are not.Just like some women get yeast infections when taking antibiotics adn some do not.The foundation charges money for testing, just like every other doctor and every other lab, because they run off of donations only. It is in our benefit that they dont take government grant money. When the government becomes involved sometimes we arent treated so well.Supplements go through the roof, we are test subjects and not humans. The VPF will give you discounts on supplements and they also have a financial program for those that cant afford the oxalate testing and they also will let you pay what you can afford for memberships as well. They work closely with those women AND men who are part of th ePin Project. You don't have the testing and then are forgotten about.They contact you, if your supplements arent working you can contact them adn they will help you in every way posible. What other lab can say that? Do you know how many times the specialit I went to see and paid $300 to has contacted me? NONE. I commend the doctors that work for the VPF. They also dont limit vulvar pain just to oxalates. Have youeven read any of their information? They work in treating FMS which is a cause for vulvar pain and IC which is a cause for vulvar pain as well. I personally have spoken to 5 women so far over the phone who are 100% pain free because of the VPF (low ox diet etc.) there are also many other women who write letters that are published in the newsletters, there are volunteer leaders who are 80%-100% pain free who volunteer their time to us in hopes to help us get better There are thousands who are pain free because of this protocol in which your dotor and others tink is crazy. One of my 2 leaders didnt have oxalates as her problem, hers was hormonal, none of the doctors she went to even considered this because she was "too young" the VPF helped her along the way and she found her cure through them and their recommendations.WE all have different opinions. I personally think that biofeedback is silly. Unless you have problems with your muscles then whats the point? I cant have sex becasue a penis hurts, yet i am supposed to stick someting inside of my vagina and squeeze?? My muscles are fine. I have talked to 3 or 4 women who are taking Guai as per Dr. St. Amand with the VPF for FMS, their FMS pain as well as their vulvar pain is GONE.Your doctor is not right saying that the oxalates causing vulvar pain has been disproved, because it hasn't been. And there ARE other organizations that charge money for their RESEARCH. The NVA charges as well. Everything they charge for goes to the research of vulvodynia/vestibulitis, IC, IBS and FMS. I would rather pay a $40 a year membership to a group of doctors that is trying to find a cure for us than to some doctor or organization who doesnt care and just hands us creams and pills to try to cover the pain. If oxalates werent an issue then why are so many people affected by kidney stones? Dr. Solomons is working with a company called Ixion right now who is studying oxalates and trying to manufacture a supplement similar to a probiotic to aide in replenishing the bacterias in our systems that have been killed off. Asking why an organization charges money for their information is like asking why doctors charge you or why surgeons charge you or why labs charge you etc. They cant do research for free can they? Just like a surgeon isnt going to give you a heart trasplant and say, no charge.I had a doctor tell me the same thing. Oxalates arent a cause of vulvar pain. So after thousands of dollars in appointments and tests and creams and pills, what am I left with? FMS and oxalates! And 2 nasty scars from 2 biopsies that showed I have irritation. Do these 2 doctors have a cure? How many people have they made well? My FORMER doctor says, oh just lop out the vestibule. Ill take my chances on an organization that was started by women with vulvar pain!!! The VPF was started by women like us! I thank god everyday for these women that they had the determination and drive to start the VPF and that these wonderful doctors cared enough to research our pain. They run off of about $300,000 a year.THATS IT! All of that is donations and membership fees. It is just like any other organization researching a disease of condition, but since it affects you then it is WRONG for them to charge money? How do you think cancer research was started or AIDS or MS or any other organization? They all start out being funded by the kindness of peoples hearts. Cancer just effects more people than vulvar pain so they are granted millions. There was a start to that biofeedback you are trying as well. And I am sure when it was first being studied, people had to pay a great deal for the device or were turned away because it wasnt ready to market yet. Oh and one more thing, the VPF supports the use of biofeedback. They dont say that oxalates are the be all and end all of vulvar pain. They also only suggest the oxalate testing when everything else has been exhausted. There are many causes and if you dont feel that it is your cause then it shouldnt matter to you whether the VPF or the NVA charges for their research. I will gladly pay my measley $40 a year and buy my $20 cookbooks. Thats a small price to pay for doctors that are working towards a cure for some of us. So far 8 doctors and a specialist I have been to have done nothing for me but managed to make my pain worse. I wish you and your doctor luck. I changed doctors because mine had the same closeminded mentality as yours. I thank God that the new one I have is interrested in the info I give her and is wowed by the research of Dr. Solomons, Dr. St. Amand and Dr. Wellims. As is my pharmacist who passes on the information I bring him to other women who come for their typical creams etc.I am proud to say I help support them and their research. WIthout money and people like them there wouldnt be research and we would still be sitting helpless like women did a hundred years ago. -I don't deny there is a corrolation between oxalates and pain but i just believe there needs to be more thorough testing before it is embrassed (thats what the present research is for that you dont understand having to pay for.) -...pain causes an increase in the body's oxolate production (pain causes an increase in histamines which affect the vulva) Thats why when some of us are in a bad flare we take antihistamines. I know I personally didnt wake up one day with pain literally overnight from a food allergy. I was on a ton of antibiotics and if you have read the research by Dr. Solomons, then it would have been brought to your attention that the bacteria that "neutralize" oxalates are destroyed and that they cant replenish themselves like lactobacilli can. I personally also dont take the word of a doctor, even if he does cut his rates for me since I am there all the time, I do my own research and I encourage ANYONE to do the same.Doctors have hundreds of patients, not just us. And I think that if you really took the word of JUST your doctor, then you wouldnt post on this or any other site. You would go to your appointments and do ONLY what HE tells you to do. Your being on this site shows that you are interrested in things other than what he has to offer. RESEARCH. Maybe you can teach your doctor a thing or two and help another woman in the long run. Doctors arent Gods. And health research isn't ever free.
CommentCandi - i never meant to offend you or anyone else! I merely wanted to voice a few of my concerns in support of Frank B and his wife. I never said that i believe the low oxolate diet is a waste of time - i just wanted to share my experience with my doctors and raise some of my questions about the research with the group. Because, as you so kindly pointed out, we are all in this group for new ideas and support. I respect every person who is trying things that work for them. I never claimed to know all there is to know about the diet - but i believe in asking questions about any treatment - even my own biofeedback (which i am sorry didn't work for you). I believed that this was a forum in which we could express our ideas - i never expected to be blasted out of the water for inquiring about some controversial content. Thank you for pointing out where the money goes and your own experience with the diet - i will take it on board, much as i had hoped people would consider my own experiences. But i guess not. I didn't realise i had to agree with everyone on here.
CommentTo C andi: I just wanted to commend you on being so positve and proactive in your approach to vulvodynia. I would be happy to see serious well funded research being done but I don't believe it is happening at the present time. Without women like yourself it doesn't look like much progress will be made. I have said that I don't think some of these things would help my wife specifically that doesn't mean other women would not benefit from them and why not try? We have been through so many different opinions and thoughts concerning possible causes and treatments now is not the time to give up listening. No one is forced to change their diet but those who are suffering might want to give it a try. I believe as do others that vulvodynia is a combination of several different illnesses with different causes and one day different effective treatments maybe you are onto a very good treatment for some. Thanks for caring enough to post here and share what you have learned.
CommentI want to share with you that I am doing so much better.I presented with vulvadynia symptoms almost 7 years ago.It was burning in the labia and the interior of the vagina.I was so desperate and in such pain. All I could ever think about was the pain. My life revolved around my burning and the changes it caused for me as well as my family.I began by contacting the Vulvar Pain Foundation. I was educated on the Low Oxalate Diet and sent my urine specimen to Dr. Solomons. According to my test, I had a high oxalates and was prescribed Caltrate. I have always been constipated and this made it worse. It really didn't help my buring either. After a while on the diet, I would have a day or two of feeling good. I think that my break through came with the discovery that I was low in estrogen. I was 38 years old and supposedly not menopausal. My doctor ran a test for hormones and found that I had low estrogen... MENOPAUSE! He prescribed the Combipatch which is a clear band-aid type of patch that you wear on your skin. It dispenses the hormones through the skin. I began to feel better. I still had burning, but a little better. Then I was prescribed Effexor XR twice a day 37.5 mgs. This also helped. My doctor also prescribed Lorazepam 1mg as needed. This is what really helped with the burning. I began taking NAG N-Acytl Glucosamine (from Dr. Solomons) 1 daily. It helped also. Drinking large amounts of distilled water helps also. If I have a flare, I try to eat a protein breakfast, eggs, toast, etc...and take my meds. I use Desitin Cream for sore or raw feelings. I rinse with warm water several times a day, use Dove sensitive soap on my body (only water on the vulvar area) and wash my clothes in All Free Detergent. Victoria's Secret white cotton underwear seem to work the best for meThey are sooo soft and don't rub or hurt me.I have been able to have chocolate and coffee recently. Not excessively, but I can enjoy them.I hope this helps someone. I am grateful to God for answering my prayers and the prayers of my family and friends for my recovery.I still have vulvadynia, but it is much more manageable and it doesn't take over my life like it used to.Best of health to all,Rachel
CommentHi everyone: I wondered if anyone else is taking Bextra. It's helping my joint pain, but my Vulva is burning like mad and I'm wondering if it's from the Bextra or menopause. I know my estrogen is low. Also, has anyone gotten through menopause without having to use large amounts of estrogen? My mother had breast cancer, heart disease, stroke, etc. and I'm afraid to use a lot of estrogen. I'm using Estrace cream on my vulva. I had been using it once a day and now I started applying a little bit 2X a day like when I first started using it. If that doesn't work, I'll have to find yet a new Dr. b/c my current Gyn. is only interested in delivering babies and expects me to find a specialist. What I need him for I really don't know!!!!
Commenti want to share something with the women on this message board. I dont mean to be highly gross but i find this to take out alot of stress about the sex thing. Well I cant have sex at all, and my and my bf tried having anal sex. It wasnt as bad as i thought it was. But it made me feel better, cause it was a way i can please him and myself... Dont think its the end of the world if u cant have sex, cause theres always other ways. And we should be more open to other things so we can please ourselves, instead of feeling sorry for ourselfs. Also another way ( a substitute for sex) is to close ur legs tight together , and put lube between ur legs, and the male can penitrate in and out of your legs, it really works best from behind...just some advice ladies, sorry if i was to graphic
CommentTo EAV: Many of us have problems with skin irritation, burning and itching. Anal sex may be acceptable for some healthy women but is a definite no no for us. Most of us have suffered for qutie some time and have discovered works and what does not. Please be careful in your activity, the rectum is not a replacement for the vagina.
Commenti went to the allergy doctor yesturday, he did this weird test on me, he took a pen cap and rubbed it on my arm and outlined it with pen, it stayed red and inflammed and raised the whole entire day!!! he did it so lightely, it just proves how sensitive my skin is. It makes sensce thats y im so sensitive in the vaginal area.
CommentIs there any chance of getting my entry in the third guest book removed. My 11 year old son is now surfing the internet and it would be very embarrasing for me to have him read what I wrote for the benefit of other women. Thank you in anticipation of a favourable response.
CommentOctober 2003 I finally found your site relating to vulvar vestibulities syndrome after reading an article in Woman's World. I have had this condition for ever and my doctor and gyn continually told me I had no yeast infection, needed hormone replacement pills or creams, but nothing worked. I finally gave up and fully resigned to the usual, sometimes a mild vinegar solution to relieve itch, other times acidophilus, sometimes other vaginal creams, sometimes antibiotic creams, everything. Sex has always been dependant on how I was feeling, nothing I took for granted. The article relates to the medical journal Obstetrics and Gynecology reports suggesting a topical anesthetic lidocaine as well as biofeedback to relax muscles, and also estrogen creams. I would like to read more about the study. Does anyone know how to find the information.please email me if any further information is av |