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Sign The Current Call To Action GuestBook Back to Call To Action-Open Letter
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Jan Templeton 20/Aug/2002:10:57:48 Nice job.
Jennifer M. Arena 13/Aug/2002:22:14:38 Great job, my friend! Please keep up the excellent work! I myself have been batting the idea about of starting something like this -- and then I happened upon this site... Lauren, I want to personally thank you for taking the bull by the horns and posting this INVALUABLE information. To everyone else, I would like to suggest reading "The Doctor's Guide to Complete Vulvovaginal Health" -- otherwise known as "The V Book". Unlike many of the other sufferers of this mysterious disease, I am fortunate enough to have a team of caring doctors in the Greater Boston area. My specialist, Elizabeth G. Stewart is actually the author of this book which is packed-full of extremely useful information that can not only help you understand more about Vulvadynia, but more importantly, can perhaps help you to educate your own team of doctors about what we're all going through. It may be the only book of it's kind in print. It's well worth the $13.95 at Barnes -&- Noble. This is without a doubt the I myself have been batting the idea about of starting something like
this -- and then I happened upon this site...Lauren, I want to personally
thank you for taking the bull by the horns and posting this INVALUABLE
information. To everyone else, I would like to suggest reading "The Doctor's
Guide to Complete Vulvovaginal Health" -- otherwise known as "The V Book".Unlike
many of the other sufferers of this mysterious disease, I am fortunate
enough to have a team of caring doctors in the Greater Boston area. My
specialist, Elizabeth G. Stewart is actually the author of this book which
is packed-full of extremely useful information that can not only help
you understand more about Vulvadynia, but more importantly, can perhaps
help you to educate your own team of doctors about what we're all going
through. It may be the only book of it's kind in print. It's well worth
the $13.95 at Barnes -&- Noble. This is without a doubt the most challenging
aspect of my life and I will do whatev
Julie McDonald 13/Aug/2002:13:33:13
G. Romero 11/Aug/2002:00:23:27
Joyce 08/Aug/2002:14:18:54 I finally receieved my diagnosis a year ago after suffering for nearly seven long years. I am getting along alright most days with antidepressents and some estrogen replacement. It is time that doctors are educated concerning this condition. Most of them think it is "in your head," and they really know nothing about this painful condition anyway. I finally found a doctor at a university who is helping me. Drug companies need to fund research in this area. There are many suffering with this condition and related ones. Too many women are going undiagnosed. Soose 03/Aug/2002:22:18:34 Is there anyone who has the name of a good doctor who is humane in the Dallas area?Thank you,Soose
k morrison 02/Aug/2002:07:21:30 I HAVE BEEN SUFFERING FOR 2 YEARS NOW AND AM DESPERATE FOR A CURE
YOULANDA 01/Aug/2002:12:58:08 IT IS GOOD TO NO THAT GO MANY PEOPLE OUT THERE IS IN SUPPORT OF ONE ANOTHER I HAVE THIS VULVODYNIA FOR TWO YEARS IT IS THE WORST CASE THE DR HAVE EVERY TREATED I THIOUGHT I WAS GOING TO BE ALONE I STAY DEPRESS ALL THE TIME CAN NOT HAVE SEX WITH MY HUSBAND OR SIT DOWN FOR ALONE TIME I NEED A GOOD SUPPORT GROUP IN TALK WITH PEOPLE THAT OUT THERE THAT HAVE THIS CONDITION IF ANY ONE OUT THERE THAT CAN HELP ME PLEASE E-MAIL ME AS SOON AS POSSIBLE IN NEED HELP SO BAD WITH THIS THANK YOU
dcat 31/Jul/2002:17:36:24 I have had vulvodynia for a year and a half, 33 years old, unmarried. Been to the UCLA Pelvic Pain Clinic, headed up by Dr. Andrea Rapkin which was started specifically for vulvodynia, yet all she could offer me was Pamelor, another antidepressant. I really didn't want to go on those, but I may have no other choice. Does anyone else with vulvodynia experience a lack of pain once sexually aroused? This happens to me, and am able to have intercourse, but sometimes not for very long. Then, of course, it hurts more afterwards. I seem to have less pain when I am eating an anti-candida diet, but am even unsure of that. Please write to me at ddcat33@yahoo.com. Thank you.
Amelia Johnson 30/Jul/2002:08:41:25 Hello from California
Kristen A. Santamari Kristen A. Santamarias Page 26/Jul/2002:20:48:00 I have had pain for many years and could not get a doctor to acknowlede it. I finally found some one willing to look past the basic answers and is willing to send me for pelvic floor therapy. It is really all I can do because there are no drug therapies for me. I hope there will be soon.Kristen
katrina 26/Jul/2002:20:45:58 I have been suffering with a horrific problem for 30 years. I justrecently was given hope that it might have a name! It has become so badthat my husband has moved out and is considering divorce because I won'tcan't have intercourse. It hurts for days afterwards. It is alsoextremely painful when I have my period. I have burning, stinging,itching and pain almost all of the time. Pardon my words, but it SUCKS!I have tried behavior modification and I can now relax my inner muscles,but that isn't where it hurts the most. Something must be done. Researchneeds to be conducted and a cure that actually works must be found!
Belinda Fortner 23/Jul/2002:10:32:15 I have been suffering with vaginal problems for about 15 years. About three years ago I came down with what I thought was a UTI that never went away. The pain in the vaginal area intensified over the years until everyday I was experiencing pain shooting down my legs, burning, itching and severe stabbing pain. I recently (1 year ago) got married. I have not been able to have sex with my husband in over 6 months. I was having problems before we got married, but they would lesson in severity the come back until one day it never went away. I am so depressed. I have gained a lot of weight. I am fatiqued and don't want to do anything. The pain has been so bad in the past that I couldn't play with my granddaughter, it hurt to walk. My OB/GYN had never heard of vulvodynia. I was diagonosed with IC two years ago and with all the research I have done I know I have vulvodynia which is associated with IC, but no one will help me. I have been to numerous doctors from OB/GYN, uroligi
Blanca 19/Jul/2002:10:32:14 I recently diagnosed myself with this dissease by reading about it in a magazine. I have been suffering for about two months now and almost in tears constantly because of discomfort. I have an upcomonig doctors appointment and am praying my ob/gyn is familiar with this being that she is a women and a very nice person.I hope that soon something is done for us women who have to suffer from this and that we can find definite relief soon.BlancaMiami, FL
Dawn R 06/Jul/2002:06:05:26 I have not been "diagnosed" yet with Vulvodynia but am 99.9% positive that's what I have based on my symptoms and lack of relief from medications for yeast infection and inability of the doctors to diagnose anything. I have been to the GYN practically every month for the past year, sometimes twice a month. The past 2 months I have had the intense burning, stinging, inability to sit and even walk, forget the sex life. The drug companies and medical community (research) don't seem to care about this issue (could it be because they are governed mainly by men?????) and until we women scream loud enough, nothing will be done. If men suffered with this and were unable to have sex for months at a time, believe me....it would be addressed and research would be underway. I still am searching for a doctor in my area who has a clue about this disorder. I'm sick of spending money on co-pays and medicines that don't work. It's pathetic that the medical community is so uneducated. Makes m
Christina 01/Jul/2002:14:51:16 I was finally diagnosed about a month ago with this wonderful disease, it was really a relief to finally have someone tell me no you are not crazy, the pain is real. It took a year of going to my doctor and having her tell me that I looked healthy, until I switched and found a doctor who had a clue. I only have pain, which means I am pretty lucky compared to many of the women who have left messages, during intercourse. My poor boyfriend doesn't know what to think and I am terrified to even try anymore because the last couple of times the pain has been too intense. To top it off I finally told my mom and she pointed out that my grandmother has lichen sclerosis, which is a particularly nasty disease that can cause atrophy of the genitalia, these are both autoimmune diseases. I go to see a specialist in September, I am hoping she has some other ideas for treatment. Right now I am taking an anti depressant which is supposed to deaden the nerve endings and reduce the pain. Which i
P. Bass 30/Jun/2002:23:02:01 I have come across this website by accident and would like to help with some very important information. Please go to www.vulvarpainfoundation.org They will explain what can be done and how it has helped thousands of women.The real culprit is the amount of oxalate in the urine, which is an irritating material which has long been known to cause pain. It causes pain both in a solution and as crystals. It will burn without the presense of infection and that is why most physicians cannot detect the cause.The doctor that has helped everyone is Cliv C. Solomons, Ph.D. Scientific ConnectionsPost Office 460427Glendale, Colorado 80246-0427This foundation will go out of the way to help all who suffer from this horrible disease. I would not still be sane if I had not come across this information myself. Good Luck and God Bless all of you
vanessa gabisan 28/Jun/2002:17:50:30 I take no comfort in being diagnosed or hearing about other women's suffering. It breaks my heart that so many of us endure constant, debilitating pain. I have spent so much time, money and energy pursuing treatment that has been inadequate. I wish no one else had to go to the supermarket with a bag of ice in her underwear.
kate simon 27/Jun/2002:12:10:43 I am almost in tears reading some of these entries. Not only because I feel for these women, but because I am so relieved that I am not the only one. I, myself, went to a series of 4 doctors who sent me home with an "I have no idea" answer. Then I found a woman at the University of Virginia hospital who was conducting a study. That was 2 years ago and I have heard nothing of her since. I was successful in stopping the pain for a while, but low and behold, it is back again..... to the point that I am lying in bed with an ice pack cursing the world, crying and sweating.... If there is anything I can do to help this research along, I am glad to do it.... that is, on days I can function...... kate simon
Jennifer 25/Jun/2002:16:05:43 I am 26 years old and I have been having this problem for about 3 years now. I just recently found an OBGYN that told me I have Vestibulitis. That's after about 6 doctors. He can't really help me. I've tried everything and nothing works. I feel worse because of all the meds I've been on. I ask for someone's help and it's nice to know I'm not the only one. I just want my life back to order. i can't even have a physical relationship with my boyfriend. I have constant burning. I hope there is someone listening to all of us out there. If you are Please help all os women that have to deal with this everyday.
JoanB 20/Jun/2002:09:58:05 Yes i agree more has to be researched and done for women with vulvodynia and related diseases and suffering, as well as life-long hormonal balance that may be related in causing it all...Since being in natural menopause stage and having more problems after having life-long hormonal imbalance, i had a punch biopsy which showed i also have vulva Lichen Sclerosus. This condition can be relieved but not cured yet. We need more research done to help women with this disease as well as all related hormonal disorders. We ought to know more now than we did with my mother's menopause. We ought to be updating data and concentrating more on NHRT for women and seeing Natural Progesterone may be the mother hormone we all may be requiring...To better days ahead, J
Elizabeth 20/Jun/2002:04:35:42 Mine is a very long story, all of 15 years! It started with a vaginal problem that needed surgery, and thats when this terrible pain started.I was treated with alcohol injections, nerve blocks and eventually I had a Rhysotomy (a spinal operation to cut the nerves), but that left me with an prolapsed bladder, and colon and ileum. It ended with a total Colectomy and an Ileostomy, but I still had the pain. My rectum was removed 8 months ago, and the excruciating pain and discomfort spread to that operation lesion. I don`t know how to cope anymore, I have absolutely no more hope for the future. Please, if there is anyone who can give me advice on how to go on living with this pain: HELP me!!!!!!!!!
amy 19/Jun/2002:15:25:17 This is just unbelievable that there are so many of us out there with this awful pain and with no cure and no "solid" options for relief. This condition is devastating. Like all of you, every single aspect of my life is affected--sitting, standing, exercising, working...not to mention having sex, which is absolutely out of the question at this point. How are we supposed to function like this?!? It is nearly impossible to EVER be happy doing ANYTHING, with this pain constantly hanging over your head like a black cloud. I sure hope vulvodynia gets more attention by the research community in the near future. The thought of living the rest of my life with this pain is absolutely frightening. reebi 16/Jun/2002:19:22:47 Ok, so I have ny own story--but investors don't care. Take a look at this guestbook and the varying treatments we all have tried and count the money. We have been willing to spend, spend, spend to end this crap. Find a treatment, or better yet a cure and you will make money.
D 16/Jun/2002:02:17:05 Melanie, the only help I can offer is that I know what you're going through. I have much the same pain as you. I often suffer all day and night long. I have had suicidal thoughts but I try to keep my focus on tomorrow and hoping for a cure. I hope that you will check out other vulvodynia websites for support. Please go to http://boards.ivillagehealth.com/messages/get/bhvulvodynia10.html. It has helped me tremendously. I hope you get help and hope there too.
m.m. 12/Jun/2002:15:03:27
TALIA 09/Jun/2002:16:41:40 Have suffered for around 9 months with symptoms becoming gradually worse. I had my 20th birthday last saturday (without any sexual pleasure i might add). I am so ready to crack up. I drink a lot know to try and calm myself down although I didn't before. I am so worried that eventually my relationship will be ruined. My doctor is great even though it took five to get an answer!I have become tired ,moody and irritable.I used to do modelling and now I can not bear to try clothes on in a shop because I feel so un-attractive, unsexy and defective.Please somebody help!
Jennifer 07/Jun/2002:17:06:44 I have suffered from vulvodynia for 6 years, and am 37yrs old. It broke up my relationship 4 yrs ago. I saw several Dr's without much relief, including physical therapy and drugs. I started taking Elavil, and the a urologist switched me to Desipramine. This was the drug that finally worked for me, at least to a point so that I only have occasional pain, increased pain during menstruation, and sensitivity as opposed to zero tolerance of penetration. I think the worst part is the time that it takes to find out what you have, and the lact of knowledge about this problem from most obgyn's. I also find it sad that most women believe that if it were a man's pain, we'd have more noise about it. Let's have a million woman march or something.
Terrell 05/Jun/2002:11:53:55 Someone must help the women who suffer from this! I have been suffering for about 9 months and am completely lost as to what to do. I wish more doctors knew how to help us!
Carol 02/Jun/2002:00:00:51 I was diagnosed with vulvar vestibulitis less than two months ago. Sadly, most of us who have this condition know more about it than the majority of doctors out there, as a result of the research we have to do on our own to understand what we're dealing with. Medical schools can't continue to ignore this disease in their training of future doctors, and as for the drug companies -- they need to wake up and smell the money they can make if they give this disease the attention it deserves and develop some viable treatments (and, dare we hope, a cure)!
c. Brown 30/May/2002:14:50:28 Please help all women suffering from this dreadful syndrome. Please help research and find a cure for this ongoing syndrome.Thanks!
Roxanne 24/May/2002:00:31:51 I have suffered off and on for 5 years. My symptoms include redness, horrific itchiness, burning, shooting pains in vulva and sometimes extreme touchiness with foreplay. I don't have pain with inercourse. I am just very sore and irratated. It never goes away, but does get worse around my periods. I have not gotten my dr. to figure out what this is, but will go to her now loaded with more info. Pay attention drug co and drs. !!
Brigette Ogden 23/May/2002:14:25:48 Searching...I was trying to think of anything positive I've gotten form dealing with this painful situation? I came up with I know myself better. I've learned to listen to my body and figure out how to help my body feelbetter. Setting my boundaries and getting my rest. Aveeno baths and Aquaphor Ointment. I've learned I'm more of an authority on my bodythan any doctor. I've said no to surgery and stopped seeing my specialist. My body rejoices at the thought of no more painful intrusions. Time to try something different. Reading the guest booksI cried, I laughed, I felt hopeless, I felt hopefull. My thanks to thewomen that signed. Thank you Lauren for your "Call To Action." I've been searching since August 2000. Searching for answers, relief, support, understanding, a cure.
Jenna Marshall 20/May/2002:01:40:23 Wow. I am scared at my possible future after reading all your entries and yet strangely grateful to realize I am not alone in this. I am 29 and about to be married and I haven't had sex with my fiance (without horrible pain) in 7 and a half months (but who's counting!). I went off the pill 2 months ago (after 10 years on it) and noticed a momentary improvement that has worn off. I am also on a anticandida diet (no sugar of any kind, no molds or yeasts. lots of whole grains, veggies and oraganic meats). my daily pain is 50% improved but I still can't have intercourse. mild improvements are not good enough! and I don't even want to go into how many doctors I've seen and how much money I've spent trying to solve this. my gynos have been CLUELESS and I am angry that this not being researched more. Please let me know what I can do to help.
Karen Crawford 14/May/2002:12:03:52 Just surfing and found the website--very helpful. I hope this helps get the drug companies going!
Reina 12/May/2002:04:20:16 Very nice web site!
JULIE SALYER 08/May/2002:22:44:15 I AGREE THERE NEEDS TO BE MORE RESEARCH AND RX'S FOR VESTIBULITIS AND VULVADYNIA JULIE
Hanna G, Helsinki, F 08/May/2002:13:19:17 I suffered from this disease for over 7 years before getting the right diagnosis! I am now 27 and it is really frustrating. I have seen numerous gynecologists, but so far received no help. One of my gynecologists suggested I just go home and eat a lot of yoghurt!!! The gynecologist that finally was able to give me the right diagnosis agreed totally with me that if this was a male disorder, there would have been a cure ages ago...
Susan Ludwig 06/May/2002:21:32:30 I to wish there would be more information for the drs on this. I have been struggling with several drs with no releif or end in site.
BB/Israel 30/Apr/2002:06:49:48 Good to know one is not the only one with this vague and frustrating problem. Do use Maelina Femine Care, like Chaela (19 March), but it hasn't stopped the burning. Haven't tried a low-oxylate diet because most of the high-oxylate foods are rich in anti-oxidents (black tea, tofu, soya...), which are important in preventing diseases like cancer. Do take calcium carbonate (500 mg. - maybe that should be upped?). Attacks may last several months, then there is a lull for a few months. I'm supposed to do a culture during an attack (so says the "expert" in Israel) but am loathe to visit my gyn., who usually decides I have either a fungal infection (there isn't a drug I haven't taken), or nothing. Doubt whether they'll come up with a drug because the problem is too vague; the least we can hope for is better pain relief remedies. BB/Israel
Laura 29/Apr/2002:00:05:52 I have had vulvodynia for 3 years. I am 24. I have sore skin that is red in places, itching, burning, and sharp pains in the nurves in the vaginal area. It all started with a yeast infection that never went away. Now I have chronic yeast infections and bacterial infections. I have found that the only meds that improve the soreness are boric acid and estrace. Although they are not a cure. I was on antideppressants(Amytriptaline and Nortriptaline), but felt that they weren't doing anything. Since I have been off of them all my pain has come back, so now I am thinking of going back on. I also heard that oxalate diet only works in conjunction with meds to releive soreness, but that it does help staying away from these foods. Also that calcium citrate has been working for some women. I wish there was a cure!
Veronica 25/Apr/2002:14:31:14
Dana 23/Apr/2002:13:17:22 Stacy: What were the foods that you were allergic to, and how did you find out? Did you do the low oxalate/calcium citrate diet?
Stacy Steele 22/Apr/2002:18:45:49 I have suffered for 16 years with this. I am only 33 years old. I have seen so many drs and tried so many prescriptions, I have lost count. I have had numerous surgeries, no help. I finally found out I was highly allergic to 5 foods that I eat daily and since desensitizing myself to them, I am 80% better. I have also had alot of pain reduction in the past from Elavil.More studies need to be done and more research needs to happen. I feel like if this were a mans disease, we would know how to get rid of it, but since it happens to women, it is "all in their heads". Well, if a man wants to be intimate with a woman who has vulvodynia, it is a mans disease too! Stacy Steele Colorado Springs, CO Janette 20/Apr/2002:19:28:48 So now I can see there really is something wrong with me,not just fear of sex (hey, I used to wear the man out, so I have alwaysthought THAT was a ridiciulous attitude). Now I need to find a way todeal with it. He needs to read this web site so he can understand it'snot him, it's not me, it's not us- it's a piece of flesh that isn'tfunctioning right. Maybe there won't be answer or cure- but maybe nowdivorce won't have to be the answer.
Janette 20/Apr/2002:19:26:36 My husband thought he married a sex kitten; now I'm a frigid old maid.We've had intercourse maybe 6 times in the last three years- all with megritting my teeth in pain and hurt for days afterward. We have nointimacy, even hugging, because if he gets aroused, it always leads tome fighting him off, him being upset, me feeling guilty and angry andsad. I've actually told him to have an affair so he can get his sexualneeds taken care of, because I am not physically able to do it. WE'redrifting apart, and no one seems to understand. I feel so guilty aroundmy single, divorced or widowed friends when they talk about not havingsex-they think I must be really getting some now that my kids are grownand it's just the two of us. I think they're better off than me-atleast they can have sex if they have a man around-I have a man but can'tdo it. OK. So now I can see there really is something wrong with me,not just fear of sex (hey, I used to wear the man out, so I have alwaysthought THAT was a
Carol Ann G 20/Apr/2002:08:51:51 Dear All-Can i join your heartfelt plea to the medical and drug communities to do something about this wretched condition. I have suffered on and off for about 10 years now; it affects all areas of our lives causing loss of jobs, loves and sanity. Do SOMETHING.From the UK with greetings.
donna swift 16/Apr/2002:14:05:57 I have had vulvodynia for over 3 years. Despite going to doctor afterdoctor, it was not diagnosed for the first 18 months. I discovered whatI had when I stumbled on the vulvodynia.com guestbook, and found adoctor from one of the women there.I am much better but not "cured". My daily pain is at a low level, andsex is not possible but still quite painful. Let me share with you whathelped me.I started seeing Dr. John Willems at the Scripps Clinic in La Jolla,Calif. Part of this program is his recommendation and part is a resultof my own research and experimentation. My regimen:1. 25 mg of Atarax before bed2. Estradiol in Vitamin E oil applied twice daily to the painful area(Note: some people may be sensitive to Vitamin E)3. a Low Oxalate, low acid diet. You can search the web for this diet.I also avoided caffeine and alcohol (most of the time) 4. Kegel exercises several times daily5. Vaginal physical therapy with a specialist. Some women havebiofeedback instead. 6. Regular mild exercise, particularly focusing on the lower back,abdomen,and thighs. I use a large exercise ball.7. Relaxation and visualization exercises or meditation also help.It took about six months before I felt much difference, so be patient -and good luck.
Sheila F. Kies 15/Apr/2002:19:01:29 I'm 62 yrs old. My husband retired recently and we had these wonderful plans to travel. Right now we are supposed to be planning a trip to Colorado for early summer with our grandkids and a trip to Alaska for late summer. I've been a square dancer for over 20 yrs and have 4 young grandchildren who know that their granny will ALWAYS take them for walks. VV has put a screeching halt on my lifestyle. Surely, the medical field can do something for us. Please. Sheila
Cynthia Parker 15/Apr/2002:07:17:17 hello. I have been suffering this for 8 years. After seeing approx. 7 different docters over the years, and trying to deal with the unconcern of docters, family and partners, I have finally found a docter who has helped.Finally.Cynthia ParkerAustralia
Viki Scher-Ivens 12/Apr/2002:02:36:50 I have had this condition for 9 years. I have seen 6 specialists, bankrupted frm a lack of health insurance, and divorced my first husband over this. I would give up my pinky toes and any unneeded organs for a reprieve for even a little while. I've already spent thousands on remedies and doctors that didn't work. I would spend 10 times that on something that did.
Amber 11/Apr/2002:20:24:07 Hello, I just wanted to sign the guestbook to be heard as well. I am 21 years old and have been suffering from vulvodynia (actually I believe it is vulvar vestibulitis) for almost 2 years. I have been to 4 doctors and have yet to find one that can diagnose me - I live in Ohio. If anyone happens to know of a doctor in Ohio or even a support group, I would very much appreciate any help. Thanks for being here to support us and get the word out! Sincerely, Amber
Kathy Juergensen 09/Apr/2002:08:48:21 Hi, I was just diagnosed with VV 5 months ago. I have tried Amitryptilene and Estrogen cream. No help. I think through extensive research on the web, the only thing I have learned is that what helps one patient won't necessarily help another patient. Hopefully this letter will help. I also think we need to stop being afraid to talk about it. There are many women out there that are being misdiagnosed because no one talks about VV.
Laura 05/Apr/2002:00:32:54 Hi, My name is Laura. I have had vulvadynia for 3 years. It started as a yeast infection. I suffered from extreme burning, itching, soreness, and a cut like feeling. I was in college, so my doctor prescribed diflucan over the phone and I kept taking it along with other non helpful meds. It spread. I went for 6 months before I was diagnosed with vulvadynia. At that time I was treated for a bacterial infection and yeast. I was put on boric acid mixed with hydrocortizone which helped, but was not a cure, simply a cover up. I was also put on anti-depressants. I didn't think they were really helping, so I went off. I'm now with a new doctor and I've progressively been getting worse, so I am thinking of going back to my old doctor who initially diagnosed me. I find the best thing is to do as much as you can. Eat better..it will make your mind feel better...use the meds that work the best for you..this will help manage the pain..and help others..that will make your soul bette
Michèle Chappaz 04/Apr/2002:22:17:45 Have been in pain for about a year and a half. I suspect that it is a side effect from the medications I take for depression (they affect hormone levels). I eat right - organic, exercise daily, use relaxation techniques and have done my therapy. I will try acupuncture and pelvic floor exercises. I have been told there is some psychological link with incest and that makes sense but doesn't explain it all. What gets my goat even more is that the worst thing I could have done is to use yeast meds and that's what everyone told me to do this whole time. Does anyone know what they are doing with our tender genitalia? I urge you to research this disorder and support alternative therapies. Has anyone tried all natural unbleached, no pesticides, pads and tampons? Acupuncture? Healing herbs? Vitamins?Vulvodynia might even result from hypersensitity to all the chemicals in our new planet.These are all avenues worth researching and suggesting to patients.Michèle ChappazMontreal, Québec, Canada
Jaye 01/Apr/2002:21:18:37 This needs to be done. How many women suffer needlessly because their doctors remain silent or worse, are just ignorant to the symptoms and illness. Vulvodynia cause patients to suffer enormous physical pain, but also devasting psychological damage as well. Vulvodynia destroys the women and makes everyday life unbearable. It is sometimes impossible to remain in a relationship, or even maintain professionalism in the workplace. The greatest loss of all is perhaps the woman's self-esteem as vulvodynia makes women feel "broken" or that they are no longer a real women. I was undiagnosed for a year and a half and through it all I thought either I had cancer or some other horrible life-threatening contagious affliction. Some days I couldn't even get out of bed because of the pain or depression. My whole entire focus in life was on my vagina. I couldn't think about anything else because the symptoms were so distracting and demanded my full attention. I thought that I was "dirty" or that I thought that I was "dirty" or that I was being punished for something I had done. But NO woman deserves this, especially when treatment is available with proper diagnosis. So many gynecologists are ignorant to the symptoms. Finally, a therapist who was helping me through the emotional stress and strain, recommended me to a urologist at the Pelvic Pain Center at Graduate Hospital in Philadelphia. There I immediately received a correct diagnosis and now, one year later, my symptoms are under control and I am again enjoying a normal life. However, my gynecologist's good intentions were no help in acheiving this, had it not been for my therapist, I would still be suffering. More drug companies, gyns, and health care professionals MUST get involved in vulvodynia education. LIVES ARE BEING RUINED NEEDLESSLY.
Catherine 01/Apr/2002:18:50:50
Liza G. 31/Mar/2002:11:10:29
R. Sydney 29/Mar/2002:03:03:29
Janice Fratangelo 28/Mar/2002:20:54:19 If this were a mens disease, I think there would have been a cure 99 years ago!
Fiona Zahedi 24/Mar/2002:17:57:20 I discovered in August 2001 that I had hypoglycemia (another "nonexistant" condition) and followed a strict low carbohydrate diet. After 3 months i was experiencing vaginal burning which I assumed was Thrush. One year later, after countless thrush and topical steroid treatments I got rid of the pain, only for it to come back one month later. I am convinced that the condition cleared up of its own accord rather than via treatments and now that I have it again I find it soul-destroying. I shall be trying a dietary approach but due to hypoglycemia my diet is quite restricted already and I hate the idea of further restriction, particularly of nuts which have been a staple snack food for me. There must be recognition by doctors that thrush and steroid treatments are not the answer and something else must be found.
Demi 22/Mar/2002:14:31:32 I am a 46 years old married woman and I have had pain for 5 months and I still do not know what is wrong with me. I have had 9 examinations. I have been treated with everything under the sun, some I just stopped trying and gave up. Everything that has been prescribed for me topically has made matters worse! I currently have an appointment with a specialist in Philadelphia at the end of April. I have chronic pain with no relief, ever. It feels like diaper rash in my vulva. It swells up and it hurts very bad. I have been told that it looks normal but I know it is red. I get angry with the doctors for not seeing the redness that I know is there. They just keep saying "I don't see anything". I believe I have this syndrome that I have been reading about on the net for months. Of all of the doctors I had been to not one of them took vaginal cultures on me. I finally found a nurse practitioner who took the appropriate cultures and they will be ready in two weeks. All the swab tests were negative so they d
Chaela 19/Mar/2002:15:55:35 Hi Ladies,I was so moved by your letters. I wanted to respond with hopefully some help and encouragement. This will be a long letter but I want to tell my story too! I'm almost 23 and have just recently been diagnosed with Vestibulitis (a specific Vulvodynia which some of you might be aware of). I've been married for 6 months now and so at a time where I naturally wanted to be overjoyed and happy, I found myself very depressed and frustrated with this condition! About a year and a half ago my husband (then boyfriend) and I were having sex when it started to hurt extremely bad one night. I didn't tell him to stop and so for the next few days I was very sore from it. A couple weeks later I woke up in the middle of the night with blood everywhere and literally pulsating out every time my heart beaded. I went to the doc and he cauterized (froze the skin) back together. Apparently what had happened was that that painful night I had ripped the skin of my vulva and weeks later Ever since then sex has been painful, especially during penetration and I've been very sore for days afterwards.Finally a doctor told me that Physical Therapy should help. He said I was having muscle spasms.After only 2 months of Physical Therapy, once a week, and doing the exercises my pain with intercourse was gone! However, there was something else going on with me. I felt like I had a really bad infection. I got a referral to a specialist who told me I had Vestibulitis. Instead of using steroid treatments I found Maelina Feminine Care which has totally gotten rid of the raw, burning! You can find it at http://www.familyhealthnews.com Click on 'ladies'. I hightly recommend it and please e-mail me with any Q's.Bless you all!
Dawn N 18/Mar/2002:10:02:19 Hi, I have suffered from VV for 23 years. I have been treated for yeast infection, but no yeast was cultured. Elavil did not help. Estrace/clobetasol did not help. Now taking neurontin. Use Xylocaine gel for rare intercourse. I have seen many MD's and most know very little, if any thing, regarding vulvodynia! Very frustrating. If this involved a man's penis, I can't help thinking that we would have a cure by now. Drug/MD representative need to study this dreadful disease. Also, how about the teaching about it in med school. I have been reading alot of info regarding fibromyalgia--vulvodynia can be part of this syndrome. It seems, for me, that it is related. Good luck in everyone's quest for a cure.
Patricia S. 17/Mar/2002:19:11:58 I cannot live like this any longer. I was first diagnosed with VV when I was 21, I am almost 29 now and this is not going away. I am going crazy. I read that a study was done and 15% of women have some form of vulvodynia. So listen drug companies - you CAN make loads of money off of this! PLEASE HELP US!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Holly Heriot 11/Mar/2002:23:04:44 I have been suffering from soarness at my vaginal area for over 25 years. I was told to wear all cotton underwear, wash in detergents for baby cloths, no pantyhose, cotton tampons and pads, wash with just water daily, no bubblebaths.... I have jusr recently at thirty years old gone to my gynecologist for extreme irritation. I was put on an anti-yeast medication (vaginally) for seven days.... No help!!!! Certain areas are pain free, but there are still areas of itching, burning, "cracking skin".... Let's get this painful ( emotional and physical) female disorder treated!!!!!Holly Heriot
Elizabeth Tompkins 08/Mar/2002:19:02:55 I am 30 yrs old and just recently been diagnosed with vulvodynia. I must say that 6 months ago I started infertility injections of Repronex. About 1 month before starting these injections I had yeast and bacterial infection. I was treated and everything was good. I then started the injections. Immediately on day 3 of injections I had this terrible burning sensation. I thought I had another yeast infection. I treated myself with monistat. It got a little better but not much. It finally disappeared. I then started another round of injections. On day 3 I started burning again. My Dr. told me to continue using boric acid supp. because nothing could grow using those. I did as he said. I then had another bacterial inf. and used metro gel which cleared it up and I felt fine. I followed this by a 3 day supply of monistat which made the burning sensation return and it has not left in 5 weeks. I went to my gyn who cultured and found nothing. The only thing he found was abnorm Bonnie 07/Mar/2002:17:09:55 After growing up in a virtual prison, I finally - at 25 - have found out what sentenced me there in the first place: chronic vestibulitis. The guards preventing my escape were uninformed doctors telling me I was probably just having "rough sex." The bars on my window were my embarrassment of the problem and misery in thinking I was the only person on the planet suffering from it. In a sense, I have never seen the light of day (i.e. enjoyed a continuing sexual relationship - or even enjoyed sex period). I would very much like a release (even a parole!) from this unjust incarceration - and thus implore the medical community and drug companies to fight the good fight and help set us free. Now that I've milked the prison analogy for all it's worth, I just want to say how great it is to know I'm not alone and I hope there's hope for us all...
Deborah Jarol 05/Mar/2002:22:55:33 Thanks for putting this together. But after reading so many stories like my own, I have had VP for 12 years and it began with a bacterial infection after many years of yeast infections, I believe that there is only one reason why this has been kept so quiet, the DRUG COMPANIES KNOW THEY HAVE CAUSED THIS CONDITION EITHER WITH THEIR ANTIBIOTICS OR WITH THE BIRTHCONTROL PILLS. If this information goes public they will loose all of their profits. Imagine if you KNEW ANTIBIOTICS OR THE PILL COULD CAUSE THIS CONDITION, WOULD YOU TAKE IT? There is your answer girls, the problem is what do we do now?
Chrissy 05/Mar/2002:00:10:01 I have only just discovered I have vv after reading a magazine last week which refered me to this website. I am so glad this isn't just me. My boyfriend has been pestering me for 2 yrs to get this 'thrush' sorted out but I knew this was something more. From what I have read today, it would seem everyone had thrush at some point including myself. My advice to this is don't take antibiotics as I and many others has found this to cause thrush and it lowers your immune system. Eating natural yoghart(a spoon a day)seems to help with the thrush which I believe brings on the symptoms of vv. I am 27 now and I believe I have had this for about 6 yrs, getting worse in the last 2 and a half. Symptoms include redness, horrific itchiness, burning, a feeling of being cut on the inside, shooting pains in vulva(sometimes with orgasm), and sometimes extreme touchiness with foreplay. I've also noticed this usually occurs on and around my periods. Sorry to rabbit on. I hope something can be don
Jody Weatherwax 03/Mar/2002:21:13:53 I was recently diagonosed with vestibulitis and also just had surgery and I am waiting patiently for the pain to stop. I dont feel any better but I hope i time i will get better. I am going to marry my best friend at the end of the month and hope that we have a healthy sexual life ahead of us. Good luck to all.
Valerie Natoli Paque 02/Mar/2002:08:28:13 Please help to end millions of women's suffering.
JoAnn B 27/Feb/2002:23:44:24
Jennifer K. 27/Feb/2002:17:54:13 Medical attention from the drug companies is desperately needed for all women who suffer from vulvar pain. I started feeling pain when I was 16 and have suffered with constant, agonizing pain for 8 years. Please consider researching medications that will address this medical illness. Dove Helena Pedlsoky 27/Feb/2002:17:26:20 I have been suffering from a very severe form of this illness. I have tried so many meds and so many therapies, and I am slowly now beginning to see some results. I found that a combo of desipramine and celexa along with bio-feedback are slowly allowing me to have a life again. I want to tell everyone that there is hope--if i can improve so can you! How I would love for the medical community to discover a cure!
Mary Sponseller 27/Feb/2002:06:12:33
Glenda Tonkin 27/Feb/2002:01:02:02 I have had vulvodynia for nearly 20 years. I went to countless obgyns, was told it was all in my head etc. Six years ago a friend read about the Vulvar Pain Foundation in North Carolina. They introduced me to the low oxalate diet, topical estrogen, biofeedback that I still practice today. These things aren't cures but they do help with the pain. Biofeedback was extremely helpful to eradicate the pain in the vestibule that made sex so uncomfortable. The low oxalate diet usually gets rid of most of the burning and itching that come with this condition. This condition appears to get worse after menopause, at least it has for me. In the last 2 years I've added antidepressants to my regimen and have taken both desipramine and effexor. Both have side effects but are helpful in alleviating the soreness that I have when I sit for long periods. They also help with the depression that comes from dealing with chronic health problems. I look forward to retiring so that I don't have to sit all
Linda Caudle 22/Feb/2002:17:22:02 I was diagnosed with vulvodynia seven years ago after being diagnosed with everything else first. I was in so much pain that I had considered suicide. I went through painful weekly injections into the vulva, changed my diet, took over 40 different prescriptions and pain killers before I was diagnosed correctly in Detroit Michigan. I had successful laser surgery. I was 75 percent better after the surgery and it seemed like I just kept getting better, burning and pain was less frequent until I was just noticing a little discomfort once every few months. It's been seven years and I have not problems with vulvodynia. Before I found the right medical treatment I went through a year of the worst pain I had ever experienced. I am thankful each day that I am living a normal life again. I am also thankful for a very understanding husband who gave me the courage to go on each day.
Jessica Thompson 20/Feb/2002:23:50:59 I think this Call to Action is just what is needed!
Barbara Gatti 20/Feb/2002:11:38:14
Melinda Osburn 20/Feb/2002:01:55:37
Gloria Bauta 18/Feb/2002:02:45:57 Eight years ago, at the age of 13, I had a yeast infection. And then I had another and then another, and another, and another... I had at least 6 over the course of a year. Since then, I have had intermittent burning, stinging, and stabbing sensations in my vulva. Sometimes it occurs without any obvious provocation. It always occurs on contact, however. For the last 6 years, I endured excruciating vaginal exams at many gynecologists' offices. I was repeatedly told to stop exaggerating that all I should be feeling was "gentle pressure." In reality, the pain was unbearable. As I became a sexually active adult, I found that penetration during sex is also unbearable. Any contact with the area is intolerable. I can't even insert a tampon. After all that time, at the age of 20, I found a gynecologist that was able to diagnose vulvodynia. I was relieved and scared all at once. Finally, someone who knew it wasn't all in my head. But there was little she or I could do about --- Pardon for signing twice...But the more I read here, the angrier I become. I'm angry that we have lived so long with this problem, that there are so many of us in pain, and that all we are doing about it is signing petitions online. THERE HAS TO BE SOMETHING MORE! WE HAVE TO DO SOMETHING MORE. If any of you know of an active movement for research and a cure, please email me: sacredrain3@aol.com
GEORGINA HOPWOOD 17/Feb/2002:10:04:50 I have been in constant pain for the last 12 months,and have only just been told I have Vulvodynia. I am waiting to see a specialist, but have already been told there is no cure! I am very depressed about my future with constant pain and feel suicidal. I am sure many more Women feel like I do!
Rose Rainoldi 16/Feb/2002:09:25:04 I have been in some level of pain or discomfort for almost eight years now. I have never even found anything that helps to alleviate the symptoms of this illness. I sure hope that somebody discovers something so
Valerie J. 16/Feb/2002:04:17:56 Hi All, My name is Valerie, and I am 40 yrs. old, divorced with no children (just a very spoiled cocker spaniel)! I have had Vulvodynia since June 8, 1996. I live in Indiana (born and raised), and was the first support group leader for the National Vulvodynia Assoc. in Indiana. I just recently passed the baton on to one of my group members, after 6 years. I have been battling with several other health and emotional problems for the past 3 years (all related, due to, or because of, my vulvodynia). The worst has been the severe, debilitating depression and anxiety attacks, which put me in what I refer to as "the black hole" for the better part of the year 2000. The last 3 1/2 years have been the worst in the total of 6 that I have had this condition, with the year 2000 being mostly blotted out of my memory. Then, finally, last November, I started seeing a new doctor who put me on Celexa and Xanax for my anxiety and depression. Within 8 weeks, I started feeling like a real person
Chantal L. Ebright-M 15/Feb/2002:11:09:15 I am so grateful to finally find this site. See, I have dealt with this for nearly 10 years. I have been diagnosed with yeast infections by the dozens... though the cultures always came back negative, I have been told it was because I hadn't had enough partners, started sex too late in life (21 yrs.) and have been told to relax and not be so frigid. Though my husband will contest that I am not frigid. I start support in two weeks. I hope to find some help for this (for myself and my husband) and also hope that doctors become more alert to the symptoms and more educated and aware of remedies and hopefully, someday, a cure.
Meredith 15/Feb/2002:10:24:24 Ladies:I don't want to scare you but my mother has cancer of the vulvar. She too had burning, itching, pain in the genital area. Apparently, that goes on for years and doctors treat it with cream. Then she got tumors that had to be surgically removed. The cancer keeps spreading. Please be aware of this rare form of cancer and be sure to get checked regularly. Make sure you don't have this condition, which sounds an awful lot like what most have you have described.
Carolyn White 15/Feb/2002:03:05:43 I come from Sydney, Australia, and have suffered from V. Vestibulitis for 20 years. My problem began with a feeling of pressure on my bladder during sex, but alll my gyn could suggest was psychological counselling.As I'd had an active and enjoyable sex life for 20 years, I wasn't buying his solution, but this was something I was to hear many times over the years. I saw 4 GPs and 7 specialists in all, only 3 of whom really tried to help. I've also had 3 unecessary operations, including a vaginal hysterectomy. Many times I wondered if I really was losing my mind, but I always believed I couldn't possibly be the only woman in the world that this happened to, and somehow I'd find someone else who could relate to my symptoms. I've also had 2 children, conceived in great pain, but worth every bit of it. It has affected my marriage, but I couldn't think of starting another relationship with this, so I try to hold it together. I finally diagnosed myself after finding a web site on vu
veronica 08/Feb/2002:17:12:32 i have been diagnosed with vvs for about 3 months but probably had it for at least a year. I am so glad ther is a support system. I wanted to know has anyone heard of the Dr. Glazer with the biofeedback electromygraphy therapy? Has anyone done any type of physical therapy.One day God will come up with a cure.Thanks
Janet E. 05/Feb/2002:14:20:27
Jennifer W. 04/Feb/2002:13:52:36 I am 30 years old, and have vaginal pain for ten years. I can't believe I've spent a third of my life life this. Mine started with a bacterial infection, and subsequently going through a lot of problems with yeast infections. From then on the pain never went away. I am always red and swollen. It hurts to sit, to stand, to walk, to wear tight pants. Even my underwear barely rubbing against me causes excrutiating pain. No doctor ever diagnosed me. I found out myself on the internet. I am now on elavil. Althought the pain isn't quite as bad, it is still there. I fear that I will never feel normal again. I remember enjoying sex, and wearing tight jeans in my late teens, and it just makes me want to cry. This has caused me to become very depressed, and almost ruined my relationship with my husband. I just wish this disease would be taken seriously, and that a cure would be found. It affects every part of my life. Only the women suffering from this can truly understand th
raeLynn 01/Feb/2002:15:09:39 I keep being refferred back to thie direction of Vulvodynia by myself. I have not yet found a doctor that understands enough about it to help. I have had burning almost constant in the vulva area and sometimes to the rear some Doctors have suggested HSV1 in the area but have never had lesions. I am at a loss and my marriage has suffered a great deal.
Lori Flanagan 01/Feb/2002:01:42:45 It has been 5 years and at least 6 Gyns. Everyone kept saying its all in my head and that I just need to relax. BECAUSE OBVIOUSLY HAVING 2 X CHROMOSOMES MEANS I AM SO STUPID THAT I DON'T KNOW WHAT PAIN IS. I am also a medical professional, I am a veterinarian. When I do something so stupid as to poke my patients where it hurts they growl and try to bite me. I keep trying to convince myself to slap, scream and generally maul the next uncaring bastard of an MD that I see. I haven't quite managed it yet. The treatment women get from their doctors is ridiculous. Men can get their insurance companies to cover viagra and we can't even get a diagnosis, much less medical research or a cure. Lori Flanagan, DVM
Dennell 29/Jan/2002:21:16:59 I have had vulvodynia for a year now. Started as a yeast infection and quickly turned into a constant, severe burning sensation. First doc offered anti-depressants and when I refused them, he gave up on me. Second doc treated me with Diflucan for 5 months. When that didn't help he told me we would have to treat it with "pain management." For the past 6 months I have been seeing a Holistic M.D. - Dr. DeOrio in Santa Monica, CA. and through diet, acupuncture, self-heal creams and herbs I have seen a 40% improvement. Still 2-3 days per week the pain is severe enough to require pain meds. Now I have a new deal - swelling or bumps just below the clitoris. So off to another gyn, with little hope, but I don't plan on giving up. Guess what? Now my 83-year-old grandmother describes the same burning pain we all do. What is the world coming to?
SHIRONNE 27/Jan/2002:00:20:26 HELLO LADIES I HAVE DISCOVERED THAT MY SYMPTOMS WERE DUE TO A MEDICATION I WAS TAKING FOR HIGH BLOOD PRESSURE. THE MEDICATION WAS CALLED ZESTORETIC. I JUST WANTED TO LET EVERYONE KNOW THAT ONCE I STOPPED TAKING THIS MEDICATION AFTER ABOUT 1 1/2 MONTHS MY SYMPTOMS DISAPPEARED!!! PLEASE LADIES IF YOU ARE TAKING ANY MEDICATIONS FOR WHATEVER HEALTH CONDITION CHECK AND SEE WHAT THE SIDE EFFECTS ARE. I FEEL SO RELIEVED AND HAPPY THAT BY DOING MY OWN RESEARCH I FOUND RESULTS BY MAKING A SIMPLE SWITCH OF MEDICATIONS. THANK YOU ALL FOR YOUR SUPPORT AND GOOD LUCK.
Susan Philipps 24/Jan/2002:17:32:55 I have suffered from Vulvodynia for the better part of one year, and like so many others, wandered thru a lot of doctors before someone became interested.I am post menopausal, and have suffered from Crohn's disease for many years. I would be interested to know if there is a connection between the two. I also have rosacea. Anyway, I began using an HRT patch instead of taking pills; I take approximately 1600 mg of Calcium citrate daily, have sitz baths with epsom salts or baking soda AM and PM. Once a month I have a vitamin B-12 shot and I also take 1000 mg of N-acetyl glucosamine daily. My condition has improved greatly but I have reached some sort of plateau and am still searching for more answers. Oh yes, I also have 1% cortisone cream which I try to use sparingly.During the past year I have experienced the burning, itching, rawness, and urgency associated with this very difficult condition. Some of these symptoms have gradually disappeared but some remain. There are not-so-good
jennifer 24/Jan/2002:14:30:20 thanks for the site it is comforting to know that i am not the only one suffering from this . my problems began a year and a half ago with frequent pain while having intercourse and urinary problems its been a long year but i am finally getting answers i was first diagnosed with intersticial cystitis which is a chronic inflamation of the bladder but was still getting frequent bacterial infections itchiness swelling around the entire vulva and unable to have intercourse i think there should be more research on this vulvadynia because i literaaly thought something was really wrong with me i have suffered from severe anxiety and depression i am only 27 and was told by one dr that i was going through menopause . anyway very nice to see this site hope we all get some help in response to the helping of the inflammation and the pain i take baking soda baths and also fill a small balloon of water and freeze it and insert it inside the vagina for a few min it brings down the swelling good luck everyone
Mira 23/Jan/2002:00:42:16 I am surprised at the similarities many women on this message board have. Why didn't my doctors figure this out? I too got these symptoms after using CLeocin for vaginitis. I went to 4 doctors this year and they couldn't help me. It turns out that while trying to figure out what was going on they found a vulvar lesion. This sucks!
Karen Esther Smith 19/Jan/2002:23:23:58 I suffered with severe pain for months and saw about 8 doctors before being diagnosed with vulvodynia. Knowing the name of the disease was no relief, however, because there is no reliable cure. If 15 percent of women have some level of this disease, and women who suffer from extreme pain, like myself, are considering or even committing suicide because of it, why is it not important enough to find a cure for? Why is the time, effort, money, and medical and scientific talent which should be spent on our disease being used to enlarge women's breasts, grow hair on bald men, change people from one sex to the other, etc.? This disease is important. Lives are being ruined. Relationships are being ruined. We are women who just want to have normal lives, have happy marriages, raise children, and work. Please help us to find a cure for this so that we can have happy, normal lives.
Judy 16/Jan/2002:13:55:27 I have had pain with intercourse since about July of 1998. For a year I was told by the gyno that I kept getting infections and was treated, but the pain didn't seem to go away. Finally in July of 1999 my doctor said she saw no sign of an infection, so nothing more was done. I happened to see my regular doctor about 4 months ago about another issue but brought this up. I am glad I did, since she is sending me to the UofM hospital where they specialize in this sort of pain. Wonder why my gyno never mentioned this to me......
Joelle Williams 09/Jan/2002:21:28:58 I recently read an article in the November Redbook by Michele Chabin. I couldn't believe that what I was reading sounded exactly like my symtoms. I have suffered from this condition for 4 years now. I have been to two different gynocologists and three urologists. This past summer, I even had my uterus wall scraped and my urethra enlarged because everyone thought this pain was a result from my bladder. I waited a month (advised by my doctor) to wait for the wall of my uterus to regrow and he said everything should be back to normal. Has it? Of course not. Fortunately, I have a very patient and loving husband who has stood beside me through this entire nightmare. Thank you for having this information available to me. I am from Birmingham, Alabama and did not see a doctor for Alabama. I was wondering if you have found one for the state of Alabama yet? If not, my husband recently took a job in Georgia and we will be moving as soon as our house sells. I will definitely get
nicola 07/Jan/2002:20:23:55 I live in South Australia, and when I diagnosed myself after desperately searching the internet my doctor told me that the specialist in my state was the useless dermtologist I had already been seeing for months. You would think being a woman she would be more caring but she was so offhand with me I will not return to her.I am getting a lot of relief from the low oxolate diet and the tricyclic drugs stop the burn8ing after urination but I too want something designed specifically for this condition.
Heather A. DeSpain-B 05/Jan/2002:14:07:53 It cut me off- i am 22. i have read about 7 and 9 yr olds having this condition- what do you tell them? How do i even think about having a 6+lb infantcome out of there, when something as small as a penis hurts? this is an important issue. and it is more popular sadly than most think. To all of those who don't suffer, and don't choose to help when you do have the resources- think about this...- don't take it for granted when you and your other make love.- don't take riding a bike up to the park for granted.- don't take wearing jeans for granted.my quality of life isn't where it should be. this isn't just about me--it effects everyone around me. My husband has has to deal with my insecurities of not feeling like a real woman... my spats of depression which is directly caused from this.help! this is for real. and it effects more people than you think.Heather A. DeSpain-BrissonJeffersonville, Indiana USA
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