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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.html Now 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. Please let 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 Sclerosus Laurie Barclay, MD July 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 one Love 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.html I 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 yesterday http://www.messengers-of-messiah.org/pipermail/health/2002-November/000293.html Now 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 |
