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CommentsHi, I thought I would respond to your entry on the guestbook so other visitors would also see what is coming up. We are now creating a professional directory of service providers, a forum/bulleting board for professionals to discuss difficult cases which also will have live conferencing capabilities with scheduled conferences. On the patient side they will of course be able to access the professional registry but we also plan on a patient registry and a patinet forum/bulletin board where patients can leave messages for one another, or chat with each other or schedule conferences. I believe that you are absolutely correct that this would create a unique opportunity to collect information on vulvar pain sufferers and would permit us to do extraordinary research by sending out surveys electronically and quickly collecting data to answer research questions as they arise. Unfortunately at this time there are some problems with our server that we expect to have corrected by the end of next week. Many of the above referenced functions are already prepared to upload as soon as we are able to access the site to make changes. Good to hear from you again. Howard Glazer Ph.D.
Comments6/17/97 I would be interested in any new information. My address is TNRBBOYLE@world.net.att.net. I have been helped with estrace cream and calcium citrate and low oxalate diet. I would be interested in any biofeedback and/or physically therapy data. I believe my condition began after being on 10 rounds of antibiotics over just a 3-4 month period of time. I have also talked to many others who feel that their condition started in the same manner.
CommentsTo Dr. Glazer and all Vulvodynia Sufferes: I too am a long time undiagnosed sufferer of vulvodynia. I am now mostly pain free. I have already placed a post on this bulletin boad dicussing my situation. Although I have no formal medical trainning, I and another women are considering writing a book about Vulvodynia. Certainly there is a need out there for such a book because as far as I know none exists. Do you feel that bookwriting about medical issues is best left to doctors? Any imput on weather to prceed with the book writing from Dr. Glazer or any woman with this condition would be most helpful. I understand that another doctor who treats VV women is coming out with a book on Vulvodynia and he is going to claim that the lo oxolate diet and the calcium citrate program do not work. That's pretty scarey stuff since many women I have spoken to have become pain free or have had a considerable reduction in theri pain from using these methods. Any feedback on this matter would be most helpful. You can privately email me at sin1234567@aol.com Thank you -Shelli
CommentsI am also Howard Glazer -- Howard M. Glazer, to be precise. I'm 42, a copy editor for the Meriden (Conn.) Record-Journal, and holder of a lowly B.S. degree from Syracuse University. So I guess you outrank me on several fronts. Tried a new search engine today and your page came up. Good luck in your practice and research. Glad to see the name has served someone so well. Regards, Howard M. Glazer hmglaz@webtv.net
CommentsI am 48 years old with a long history of female health problems, including being a DES daughter and a diagnosis of having the HPV condition. For the last 2 years I have had the vulvar inflammation making sexual intercourse uncomfortable at best and impossible for the last 12 months. My gynoclogist has run out of ideas and next week when I go to see him I plan to hit him with the article I found on the WellnessWeb on Vulvodynia. I am relieved to find there is a name for this condition. It helps to know that I am one among many although I would not wish this off on anyone. I appreciate the guest book. Alot of the comments sound sadly familiar. sgrommet@insolwwb.net
CommentsMy mother, age 77, has been suffering from this condition for the last couple of years. It has taken over every aspect of her life, and has begun to limit her activities to a great extent. She consulted an expert at Johns Hopkins, but so far the various treatments they have tried have met with little success. Has anyone had experience with the use of antidepressants with this condition? Anne Hardman HardmanA@exmur.nia.nih.gov
CommentsSeveral women in the Boston area are suspicious of a link between pelvic surgery and a form of vulvar pain that may be a subset of Reflex Sympathetic Distrophy. We developed a nerve pain or causalgia following a surgery that causes severe burning in the vulvar area, including the I.T. or sit bones as well as bladder symptoms. Another term may be pedundal neuralgia. The pain onset was post-surgical. We have tried various medications and most of us rely on narcotics for relief of severe pain. The medical establishment seem reluctant to link our symptoms with post-surgical damage, however, we know our bodies and believe our pain is the result of nerve damage from hysterectomy or other procedures. We need to hear from you if you identify with us. Thanks. Tammy at rfcubi@earthlink.net
CommentsI'm a physiotherapist working in the UK. I have come across several patients who complain of feeling a very strong desire to urinate during intercourse which is so strong that they are put off sex a lot. Is this also vulvodynia? Nicky Mackenzie nicky@romsley.demon.co.uk
CommentsWhen a lady has vulvodynia, is it common for her to have a white (or sometimes yellow) stringy discharge from her vagina several times daily? It is like having ovulation every day. I also find the itching is acute when I lay down to go to bed at night. Anybody else experiencing this? indy@utkux.utcc.utk.edu
CommentsI am 26 years old and suffered with Vulvodynia Vestibulitis for 5 years. I was 19 when I started having problems. It took maybe 10 months before I had a confirmed Diagnoses. I went to 2 specialists and the second one changed my life. I was on anti-depressents on and off for 2 years. It took the edge off so at least I could work and fuction as a human being. After a year and a half of interferon treatments, I opted for surgery. I had a vestibulectomy with reconstruction, and it's 30 months later and I'm pain free. I'm living a total normal life right now, and everything fuctions normally. Not every treatment will work for everyone and attitude has a lot to do with it. I didn't try the oxalate diet because I basically ate a low oxalate diet anyway, except I eat chocolate once in a while. The interferon treatments helped cleared up my condition a little bit, but the surgery worked for me. I had a history of chronic yeast infections, I think that is what irritated me. Otherwise I had no other problems until I had yeast infections. If anyone wants to email me at Casucci26@aol.com...........Justine
CommentsDr. Glazer, my appreciation for your web site. I have been diagnosed as having a “variation of vulvodynia.” The reason I write is because I have seen no reports of symptoms such as mine. A brief history. I am in my late sixties. Menopause began in 1978. I did not wish to use hormone replacement therapy, so I put up with bouts of hot flashes (often preceded by 2- or 3-minute episodes of violent depression). Three and a half years ago, I began to experience mild symptoms of what I will now call vulvodynia; these usually appeared after sexual intercourse, particularly noticeable when I was in a car. This was not pain, as I have seen described by other commentators, but super-stimulation. The condition escalated until things became unbearable. At this time, before I was on any medication, I began to have have the sensations of ovulation, always on my left side. Also, one particular area of the vulva, also on the left side, began to be particularly sensitive. There were climaxes, when I was totally incapacitated, now with pain. My gynecologist recommended that I go on Prempro, partly because the hot flashes were radically exacerbating my problems. He also recommended Estrace. These medications did somewhat relieve the pain part, but the other condition remained. Amitryptilene (25 mg.) helped in a minor way, but yet another doctor recommended that I reduce the dosage to 10 mg. and use an ointment called Dovonex. I’ve seen practically no change. This doctor bid me goodbye by saying “Good luck!” Not very encouraging.
CommentsHi again. I have posted to this guestbook a couple of times previously and have another bit of information. I found on the Web a cushion which really helps a lot. It is called Comfy Cushion and you can find a description at http://www.compumedia.com/~camellia/desc.html I have had this cushion for almost a month now and it is very very good for what ails me. The depression in the center takes all the pressure off my painful area and enables me to sit for much longer than previously. The cost from the source is $50.00 however when I called them to advise them that I could not find a local dealer they put me in touch with their manufacturer's rep who brought one out to me and only charged me $40.00. So the price is flexible. If you cannot find a dealer call the 800 number at Camellia and they will help you to find a cushion. The only problem with it is that at first it is a little hard to sit on but after an hour or so for a few times it becomes incredibly comfortable. I am sure it would also help a lot of back problems. Incidentally, I had vaginal surgery (reconstruction) for my cystocele and rectocele a month ago and am slowly getting better. The cushion has make a tremendous difference and I would definitely recommend it for anyone who has the patience to "break it in". I use it in my car and when I return to work I will take it with me. Cheers. Ora Royce NEWARKMT@Worldnet.att.net
CommentsHoward, Excellent site indeed. Useful information and references for a problem that not enough physicians really know how to handle. Keep up the high standard.
CommentsHi me again. I am the one who left the extensively long message at the beginning of the web site that was when nobody was posting so I guess I figured I had the space(Ha!) Anyways I wanted to let people know that I am now seeing a practioner who is a chiropracter, nutritionist, and practices both homeopathy and applied kinesiology. I think the following information might help women who are reluctant to get surgery or go on anti-depressants and may prefer a more non-invasice natural approach. I am now using Pro-Gest all-natural Progesterone cream 2X daily, witchazel applied topically 2-3x daily, and a homeopathic remedy for sexual pain and inflammation 1x daily. I also steer away from coffee. In the past 1 1/2 months I have being doing this I am feeling 85% better. I even managed to have intercourse the other day pain-free for the first time in 4 years!! So if anyone would like to e-mail to chat about this natural approach please feel free! I am hoping so much that I am getting close to beating this terrible thing!!
CommentsWow! after feeling so alone and desperate for three years, it is comforting to know there are other women out there who suffer from this horrible disorder. Try describing the mental and physical pain to numerous doctors, friends or family; almost impossible to comprehend..until now..we don't have to suffer quietly, feel embarrassed or ashamed. My symptoms and attempted treatments are similar to what others have described. Creams were costly and mostly, ineffective - antidepressants just made me feel "out of control". As a once confident and attractive 27 year old, three years of vulvodynia has robbed me of my sexuality, my self-esteme and the appreciation for those little things in life that most take for granted. I think this condition is more of a mentally destructive than physical. My friends couldn't understand why I wouldn't want to go out and/or date anymore, my co-workers would make fun of the way I would walk (because I couldn't stand the pain) Trying to explain to prospective boyfriends why I couldn’t have sex was hard. Most couldn't understand how I could have unexplained infections there, some left because they thought I had an STD. Some understood but eventually left me out of sheer frustration. BUT SOMETHING WORKED IN RELIEVING PAIN!! I gave up all creams, pills, lotions etc. I also gave up baths! NO BATHS only showers. I stopped using soap on my vagina when cleaning. (yes, sounds weird but a warm cloth with a bit of vinegar can do the trick) I ensured NO contact with even my shampoo would happen. Most importantly, I changed my laundry detergent! I use Ivory Baby soap. NO TIDE, No fabic softner, no bleach etc..and I wear a new, clean pantyliner every day! Within two weeks, my symptoms almost disappeared. Funny thing too, if and when I accidentally use soap down there or forget to wear a pantyliner, It flairs back up. Oh yeah, no spermicide either. I had sex last month for the first time in a year. I used a condom, felt a bit of discomfort for a couple days and was felt better. I know this problem is always with me because I can always feel it a little bit now but changing these few things have made a world of difference! This condition came out of no where. It is my goal in life to send it back there forever.
CommentsHello, my name is Jennifer and I have been suffering from vulvodynia for just over a year. The worst part of this whole nightmare was going to doctor after doctor in search of relief before I finally found some- one to diagnose me. I was fortunate in that it only took me five months to find a doctor who had heard of vulvodynia! I have been taking Nortriptyline (palomar) tri-cyclic anti-depressants (50 mg a day)since sept. '96 and have had a great deal of relief, though I am not pain free. I have also eliminated caffeine and junk food...I don't know how much that has contributed to my relief, but I sure do have nicer skin! I also try very hard to get enough sleep, as tiredness has a huge effect on my symptoms. On bad days (I still have 3-5 a month, just before/after my period) I sleep with ice between my legs (it's always the worst at night) and go without underwear. I NEVER wear nylon panties or pantyhose. I have also found bathing with Aveeno (oatmeal bath) helps, though it doesn't smell that pleasant. :) I am hopeful that this condition will abate with time, and I am very excited to see a community of fellow sufferers developing on this page! Thank you Dr. Glazer! Oh, for what it's worth, I am 27 years old, recently married, suffer from frequent bladder infections (though not so much in recent years), and had an eating disorder in high school. feel free to contact me at:
CommentsHi! What a great place this is! I'm so relieved to see so many people signing this web page! I'm 20 years old and it's also been great to see a few people my age with this. I've been looking on the net for new info every few months and I continue to find the same old stuff. It is very helpful in the beginning, but after a while it gets old. I am very interested in what Lisa's doctor (message from 5-16-97) will have to say about all of this. My gyn just attended a conference where the experts agreed that vulvadynia is a neurological disorder. We will all have to wait and see what develops from that though. My vulvadynia is one small component of a much larger problem that I have been experiencing full force for about 5 years. I have many of the same symptoms as the rest of you: frequent and painful urination, IBS, painful periods (I am currently in menopause through a Depo-Lupron shot once a month), fatigue, headaches, joint pain, sinus problems....the list goes on!!! For me, true relief will come when the docs can figure out the cause of all of my symptoms and then find a way to fix it. All I can say is don't give up, even in those intense moments of dispair. Keep looking for a good doctor to work with and find support!! There are many women here who seem to be happy to chat with others in the same position! Please feel free to e-mail me anytime at hookermf@flaglink.com during the summer OR hookermf@acs.wooster.edu during the school year. Take care, good luck, and thank you Dr. Howard Glazer for making this site available!
CommentsHi! What a great place this is! I'm so relieved to see so many people signing this web page! I'm 20 years old and it's also been great to see a few people my age with this. I've been looking on the net for new info every few months and I continue to find the same old stuff. It is very helpful in the beginning, but after a while it gets old. I am very interested in what Lisa's doctor (message from 5-16-97) will have to say about all of this. My gyn just attended a conference where the experts agreed that vulvadynia is a neurological disorder. We will all have to wait and see what develops from that though. My vulvadynia is one small component of a much larger problem that I have been experiencing full force for about 5 years. I have many of the same symptoms as the rest of you: frequent and painful urination, IBS, painful periods (I am currently in menopause through a Depo-Lupron shot once a month), fatigue, headaches, joint pain, sinus problems....the list goes on!!! For me, true relief will come when the docs can figure out the cause of all of my symptoms and then find a way to fix it. All I can say is don't give up, even in those intense moments of dispair. Find what works for you! Keep looking for a good doctor to work with and find support!! There are many women here who seem to be happy to chat with others in the same position! Please feel free to e-mail me anytime at hookermf@flaglink.com during the summer OR hookermf@acs.wooster.edu during the school year. Take care, good luck, and thank you Dr. Howard Glazer for making this site available!
CommentsHello. I cannot explain how thankful I am for this website. I am 30 years old and have been suffering from this disease for 8 years. Like the others who have written before me, this problem has been devastating. My problems started when I was 22. The result of a routine pap smear had come back a class III. After more testing, biopsies, etc.. my doctor recommended laser surgery on my cervix. I was told that I would need about six weeks after the laser surgery to heal. Well, after that surgery I was never the same. I kept returning to my doctor over and over explaining that something was wrong, and that I had excruciating pain with intercourse. Over and over, she said everything looked fine and that nothing was wrong and prescribed antibiotics in case I was getting an infection. I went to doctor after doctor. I also had chronic yeast infections during this time - a result of all the antibiotics. One did find that my cervix had a slight infection from the laser surgery, however no one could diagnose the pain that I had with intercourse. One doctor tested me for HPV and found that I had it. She felt that my symptoms could be a result of the HPV and recommended interferon injections to the inflammed area. Well, the treatment did not work. I switched doctors again and have found an absolutely wonderful doctor who is up on treatment for vulvodynia. She is the one who suggested that I check the internet for info. So far, she has treated me with topical steriods and elavil. Neither worked. I seemed to have a high tolerance for the elavil and actually went up to 100 mg per day. Now, I am trying the low oxalate diet with calcium citrate. I've only started this within the past few days. Only time will tell. I am so glad that there are people out there who can relate to this disease. I searched and searched for many years for a doctor who would/could validate my pain. I was also told by one that "this was a psycological problem that I had with my husband." Well, I ended up at a psychologist who (thank god!) determined there was NO WAY this was psychological and sent me back to another doctor who finally determined what the problem was. In the past, I also have been depressed and ended up on Prozac. My marriage was almost completely destroyed by the physical AND emotional toll. I, too, became so afraid of the pain that came with intercourse - that I shyed away completely from any affection what-so-ever from my husband. After years of this, I became totally devoid of any libido at all. It has been only very recently that things in my personal life have begun to improve. And that is because my husband and I both now KNOW that what I have is a real physical problem. We are dealing with it the best we can. I am not who I was 8 years ago. I was a self-confident, vivacious young woman who enjoyed intercourse with my husband. I have a lot of anger regarding the loss of this part of my life. A lot of the time, this embarrassing, painful disease makes me feel like a freak. I can only hope that one of the treatments out there will work for me. I am so thankful that this information is out there. I have no idea if there was something about the laser surgery that is connected with my problems. It just seems very weird that this is when all my problems started. My doctor thinks there could have been some sort of nerve injury. I welcome any new information and would like to talk to others out there who have been through a similar senario. My address is ptstarr@horizons.net. Again, this is a wonderful thing! I have already learned so much from reading this material.
CommentsHi Dr. Glazer I was looking at the bibliography and I was wondering what's the best way to get a copy of a complete paper. Do I need to find a medical library in my area?
CommentsHello It is very assuring to know that there are physicians that care, such as Dr. Glazer, who put this web site up. I have vulvar burning and burning around the hymenal area, especially during intercourse. I have had this pain for a year and a half now and it seemed to come from "nowhere." I have tried many soaks. Recently, a nutritionist recommended for me to soak in food grade(available at health food stores)35% hydrogen peroxide, NOT the 3% kind. He said to soak in 8oz. once per day added to bath water. Baking soda and bath salts added are a plus. I have tried the last two by themselves with no luck. I noticed a difference IMMEDIATELY! In five days, I was able to engage in intercourse, even though I still feel I have a more healing to do. I had no pain whatsoever. I would suggest to wait longer than five days before attempting that. I did however notice alleviation the first times I used it. It is not recommended to be used externally for than 60 days and it's good to supplement antioxidants while doing this. H2O2 is a type of oxygen. Silver Creek laboratories makes it, but there are a few others. It is cheapest to buy this by the gallon, but 32oz. is recommended just so you can try it and see how you feel. Let me know!! misty
CommentsHoward, I have been a patient withthis disorder for sevenyears, only recently discovering that it has a name. Onset corresponded with early menopause; very low dose hormone replacement therapy has been in effect (i.e. Premarin .075 q2d and Provera 1.25 days 21-28). I have no history of depression, could possibly be a diet controlled mild diabetic. I am convinced that I know the onset of the disorder, but not the treatment. I strongly suspect that many women are intolerant of the "stay dry" lining on comtemporary pads. The are a synthetic substance and are the equivalent of wrapping the genitals in Saran Wrap. I suspect this becasue I can identify the onset of my condition. In 1990, I went to Russia. Because of relative scarcity of supplies for bathroom, I wore a pad during day hours for "protection and absorption." These pads were changed two to three times a day. With these precautions I got my first and my worst episode. Since then I have noted intolerance to pads, and over time it has been only miminmally helpful to wrap pads in Kleenex. This may be researchable proposition. Would be interested in your views. I might be persuaded to participate in a research program if I have control over any extraneous drug (other than the independent variable) that is involved. Geri Bishhop Ph.D. Clinical Psychologist 2636 Old Mill Stream Cordova, TN 38018-8520 901-754-6463 Home 901-757-1245 Fax 9901-388-1893 Office
CommentsFor those of you who have revisited this site lately you can see that many changes have taken place. We have plans for a professional registry and a chat/conference room as well. I have recently emailed all of you who left your email addresses on the guestbook. I am putting together a mailing list from which I hope to create a "listserve" for vulvodynia. A list serve is a mailing list you can join which allows you to both send and receive email to all those on the list. I thought this might serve as a good way to promote patient interaction and may serve as a means for data collection in the future. To those who expressed an interest, thank you.
CommentsI have vulvodynia and interstitial cystitis for years now and I am very happy to see this web site. I have been to more doctors than I can count and had many very painful treatments over the years. In reading others comments I am disturbed to hear some of the others claim that the Low Oxalate Diet and Calcium Citrate doesn't work. For me this treatment has helped me so very much that I am able to function more normally than ever before. I had the pleasure of meeting Dr. Clive C. Solomons at a seminar for the Vulvar Pain Foundation and he is working to find out why some women are not responding as well as some of us others are. Perhaps they didn't give it enough time. I didn't feel much better until about 3 months on it and now it has been years and I would never go off of it, as it has given me back my life. I am a volunteer now for the Vulvar Pain Foundation because of the help that I have received from them I will be forever grateful. I think that your site is a very good thing and I do hope that the medicial community will learn more about this painful disorder and never again tell women that "it is all in their heads".
CommentsHi All I am putting this here because I don't know what all of us have in common, except we all suffer. I think it would greatly help if we knew some of the factors that are similar between us. I am twenty years old, I had a miscarriage, therefore a D&C on 04-94. My periods never fully reestablished to normal, being sometimes 50 days apart. I met a new person, got my first urinary tract infection, it went away. Then every- thing was fine for a year and a little more. Then, I felt I had a yeast infection and monostat didn't work, so I went to the doctor. Doctor gave me repeated antifungals, antibacterials, creams, etc. said that there was no yeast therefore, no problem. The pain has continued for a year and a half, and it goes away around my 20-23 day, then comes back with a vengeance. I feel intense burning during and after intercourse, semen is like fire. My mother and great-grandmother are very sensitive to certain toilet paper. WE MUST ALL HAVE SOME CONNECTION WITH ONE ANOTHER!! Does anyone have similar life history, such as reproductive area surgery, irregular periods, then recurrent vaginal infections, etc...I hope that the key is finding what we have in common. I wish there was a study group for people with this problem. I wish it would have waited five or ten years, so I could experience some of my young adult life being semi normal. When I was five, I used to have to take prescription propanol for migraine headaches. There is so much, so what caused this? M.B.
CommentsIt is truly a joy to see this website. I have suffered with vulvar vestibulits for six years now. It began after a botched hysterectomy and repair of rectocele, cytocele. Continuous yeast infex, due to heavy dosage of antibiotics exacerbated the problem. The doctor who did the surgery sewed me up too tightly, told me I was "just tight like a young girl" and sent me on my way with a recommendation for vaginal dilators. The pain was excruciating, so I went to another doctor for a second opinion. He took one look and told me what I had already known, that the opening was now so narrow that he had trouble inserting one finger to examine me. He told me the only way to enlarge that opening was with more surgery. So I had surgery again, with even greater pain afterwards. No one could see any problem, nor figure out why I was in so much pain. I have been unable to have intercourse for six years. I went to a specialist in Madison, WI who referred me to yet another specialist in Milwaukee. Both suggested treatment with cortisone injections to the area. Three treatments and no relief. In fact, it seemed to be worse! Both docs recommended surgery, but with my allergy to stitches, the extent of the scar tissue in the area and the large area affected, the chances for recovery or relief were only about 50%. In addition, it takes forever for me to heal, and I had no assurance that it would indeed heal in a reasonable amount of time. I took tricyclic antidepressants for two years with no relief. Two years ago I was diagnosed with Fibromyalgia. I have since read that many who suffer from VVS also have FMS, although I have seen no statistics supporting the opposite. I have just learned of the low oxalate diet and am anxious to try it. Anything once.... I remarried in the time between the hysterectomy and second surgery, never suspecting that I would be unable to consummate the marriage. I am tired of being told that "there are other ways to get satisfaction." It is not the same. Intellectually, I have become accustomed to the idea of being a sexless being, but my heart just doesn't seem to be getting the message. I am not currently being treated for VVS because no docs in my area seem to know what it is, much less how to treat it. I know this is long, but for six years I have lived with this in silence and I cannot begin to say what it means to me to have this opportunity to discuss, complain, sit on the pity potty, etc. Thanks.
CommentsHi, My medical history is similiar to others. I had two falls on my tail bone. One at the age of 14 and the other at the age of 19. At the age of 20, I developed a bladder infection and they gave me antibiotics which then caused yeast infections. I also battled during that time with starving myself. For the next few years it was a constant battle and one yeast medicine after another. I am now 27 and go to a natural doctor in Conn who treats it as an allergy.. I have tried Dr. Soloman but it didn't give me much relief. I found that giving up sugar and going to a physical therapist along with a restictive diet has helped. I'm interested in finding a connection between back injuries and pelvic pain. I'm also interested in finding as many women affected with this in their twenties because one magazine would not publish an article on this subject because it did not reach the "younger" group of women. I think this board is great but it is only the beginning . We need more research , money and voices to lobby!!! Please E-mail me anytime.
CommentsSome of you may have noticed references in the guestbook to a "listserve" A listserve is a mailing list that allows all members to send out an email that goes automatically to everyone registered on the list. This would allow anyone to ask a question or make a comment and immediately send it out to a large number (hopefully) of other sufferers. It could also serve as an extraordinary resource for rapid data collection to conduct research or to make listmembers aware of new information. If are interesting in registering for the listserve we hope to have it up and operating as soon as possible (several glitches are being worked out) I can add you to my present list of names and email addresses which I am preparing in advance of the listserve. If you would like me to add you to my present email list for later inclusion in the listserve please email with your name (or whatever identity you choose) and your email. Thanks
CommentsPlease include me in the listserv. I have had vulvodynia for 21 years. In retrospect, I think I had slight nerve damage to the perineum during childbirth, causing mild pudendal neuralgia (one spot sore to the touch only, still the same now). I then got persistent yeast infections, partly from taking antibiotics, and from constantly using yeast medications I developed an extreme local sensitivities to most substances, including soap, anything supposed to be soothing, and even water (except distilled). (This is is in retrospect; at the time I had no idea what was happening.) I also got several other infections. I have had no infections for 10-12 years now, and the inflammation has largely calmed down, with flare-ups. For the last 8 or so years, my symptoms have been mostly urinary discomfort, sometimes intense. I've never had a UTI, and my bladder is fine (no IC). Seems to be a nerve problem. I'm 47 and am a DES daughter. I'd also be interested to see a listing of practitioners who do biofeedback for vulvodynia.
CommentsHello I got my first bladder infection, then yeast, and now I burn on the area in which I urinate. My hormones are off balanced, I have trouble gaining weight. I asked my doctor if the hormone imbalance could be related, all of them have said no. If vulvodynia is neurological, then why isn't it hormonal. After all, in order for electrical impulses to reach synapsis, they require hormones to do this. I read this from Paavlo Airloa, Every Woman's Book. If the hormones are off balanced, isn't the neurological systems? system? I used to smoke a lot of marijuana, ACTUALLY, when this started, and that does affect the neurological systems; it affects moods. Does anyone know anything about DLPA or D-L phenylaline and chronic pain? I know it does something with the noreperipherine, and people take it for depression. It's an amino acid. This "thing" does seem to follow my menses. Also, there are very few listings or articles that state that women have dealt with this more than 10 years; with the exception of a few, why is that? This started when I turned 19 years old. Any info. would be helpful because somewhere we have a link.
CommentsI have had the symptoms for about 10 years!!! I've spend thousands on doctors with zero results. Like others, my marriage has been strained by this condition. I only became aware of a name for this condition a couple of days ago when I happened to read a little blurb about it in Ladies Home Journal. After having read some of the comments and info on this website, I am gratified to see at least that I am not a freak of some sort and that there are other women out there who suffer the same problem. After having spent so much effort without any results, I simply gave up on trying to "get fixed" several years ago, although my husband constantly nags me to go to the doctor, saying I'm not trying hard enough. Now that I have some useful information I am encouraged to try seeking medical treatment again.
CommentsI am 53 years old and have been suffering from vulvar pain, itching, stinging, burning, small ulcers, fissures, and white patches for the past two years. This condition started right after I finished a course of Amoxicillin 500 mg for a sinus infection. A couple of days after the pills ran out, my husband and I had intercourse, and for the first time in our 25-year marriage, I felt pain. We tried a few more times, and each time the pain was worse. I saw an OB-GYN at my HMO who said I had some sort of vulvar dystrophy and that I needed hormone replacement therapy. Since my menopause had been relatively easy (just occasional mild hot flashes), I turned down the hormone prescription. Since then, I have seen several doctors and had three biopsies for cancer (all negative). The third biopsy came back with a diagnosis of lichen sclerosus. I immediately researched everything I could find on this progressive skin disorder, including looking at pictures of it on the Web. I'm not convinced this is what I have--the pictures don't really look like what I see with my mirror. I just started the low oxalate diet after reading about it in a Harvard medical book and seeing some information on it at a University of Michigan web site. I've also bought a special cushion to sit on at work that has the center portion cut out. In addition, I've started laundering my all-cotton boxer underwear in Woolite rather than Tide and putting them through the rinse cycle twice. It's too soon to tell whether any of these measures will help. Interestingly, I've had three other sinus infections that were treated with Amoxicillin since that one two years ago, and each time the itching, stinging, and burning have been much worse after finishing the medication. Even lowering the antibiotic dosage to 250 mg instead of 500 mg didn't help. My husband has been very supportive through all of this, but he's probably very tired of hearing about it from me. We haven't even tried to have intercourse for the past year. I hope the low oxalate diet helps. I know the condition always seemed to flare up after I ate spicy foods or junk foods like potato chips. This web site is a wonderful idea--it certainly helps to know you're not alone!
CommentsI've had vulvodynia and fibromyalgia for 2-3 years. Right now, I'm finding quite a bit of relief from using Estrace cream. I urge everyone to join the Vulvar Pain Foundation and the National Vulvodynia Association. The information I've gotten from these groups has been invaluable. I also encourage everyone with vulvodynia to look into fibromyalgia as well as these two disorders are so closely related. Some symptoms of fibromyalgia may include difficulty sleeping, fatigue, and muscle pain. Here are some web sites to get you started: http://www.sover.net/~devstar/ http://www.shaysnet.com/~wmson/ http://www.primenet.com/~camilla/ http://prairie.lakes.com/~roseleaf/fibro/index.html
CommentsAlthough I have not "offically" been diag. with Vulvodynia, I share many of the same symtoms with the other women. About 5 months ago, I developed a bacterial infection and was treated with flagyl. After the course of antibotics, my pain (a feeling of steel jaws on my lips) did not go away. After and exam, my doctor determined that my vagina "appeared perfectly normal". My pain continued and I switched doctors to only find out that I still had a bacterial infection. Another round of anitbotics, Clendamycin ?sp was prescribed. That failed. Then after a culture, amoxicillin sp? was prescribed. That cleared up the infection. Of course after 3 rounds of antibotics, a yeast infection followed.. Three different anti-fungals were prescribed including: Diflucan, Nizoral, and finally Sporanox. My estrogen level was checked and found to be low. In addition, my B-12 and B-50 levels were very high! (Due to taking B complex suppliments) Additional estrogen/testostrone was prescribed. Elavil at night. After these infections, I still had a slight irritation really on only one side of the vulva. The irritation would come and go and change from day to day. Nothing prescribed helped, such as xlocain sp?, hydrocortozone, Nystain cream. Sea salt baths seemed to help some. I also noticed that my pain is worse in the afternoons than in the mornings (due to sitting all day). Donut cushion helped some, but threw my back out. I did find some relief using pure aloe vera from my plant. Sometimes I used it at night and by the next morning, wonderful! I do think that contact and friction make the matter worse. Of course intercourse is becoming rare although on good days a little astroglide lub. makes it almost wonderful. However, payback is always there after sex. 2-3 days of inflamation. I've tried taking a sea salt bath after intercourse, icing the area after the bath. After that experiment, I experienced less irritation after intercourse. I have to say that I have been referred to a specialist, Dr. M. McKay at Emory in Atlanta, GA. It seems she is one of many leaders in this field. I have begun to reasearch all her papers she has written on the subject. Hoping to understand this disease and cope with it. Researching is a wonderful way to feel in control! You feel like you are actually doing something that might help! If I do have vulvodynia, I plan to seek counseling in order to deal with it more effectively. Some of you may think that I haven't experienced the "worst" of it, but I tell you the depression is "a creepin on me" and I have to fight it every day. The Elavil I'm taking hopefully will help in that respect too. 50 to 60 mg. seems to be the dosage recommended for pain relief according to Dr. McKay's research. I have read all the posts on this page and see a lot of people who have given up on the sex. Please remember that there is more than one way to have sex. Many pleasurable zones on our bodies and many things we can do to our partners and they can do for us. Even no sex, but just hugging and cuddling naked! is a form of intimacy! I know vaginal sex is missed, I miss it, but some things I have to accept and find ways to deal with the hand delt to me! Marriage counseling is recommending in order to deal with the chronic pain issues and sex issues. I too worry about the strain on my relationship, but my partner and I have agreed that we will "deal" with changes. So, hope this helps someone. p.s. A summary of treatments, etc. Antibotics Anti-fungals Cortozone creams Estrace cream Sea salt, baking soda, and boric acid baths (tablespoon) Drying w/ hairdryer after showers/baths and applying corn starch Only skirts with thigh high or knee high hose No underwear at any time! Heat seems to aggravate it so loose clothes/skrits. Even a fan blowing on the area helps. Pure Aloe directly from the plant helps Hydrocortozone cream, other over the counter ones too-no help Benadryl 50 mg. no help and I'm sure there's more, but can't think of anything else. I think the most frustrating thing is how many different things we try and nothing seems to work consistently! Please excuse my misspellings...hooked on spell check. Looking for relief,
CommentsWonderful to see this site, especially the bibliography. I'm 27, have had vulvodynia for 7 years, lost my marriage and several relationships (and a good part of my mental health) to it. I'm a doctoral student and comfortable reading the medical lit and frustrated beyond words at knowing more than the gyns in my area (central Oregon) about it. Please add me to the listserver. Also, I've been diagnosed with subclinical HPV, and I'm curious about the tests of the HPV vaccine going on at Rochester -- anyone know when some of us may get to try it?
CommentsFirst, I have to say thanks for this wonderful site. I have had vulvar/vaginal iching and burning for the past 18 months.My doctors treated me for bacteria and yeast.Most of the time my doctor couldn't find anything but redness and inflamation.I also took Zorvirax for Herpes.After, my doctors told me to go off all treatments to see what happened I started looking for ways to help my self.I have found it EXTREAMLY helpful to soak my underware in a my homemade formula ;-) which consists of a 9 QT bucket filled with cold water.In the water I place the amount of Liquid Clorox 2 that i would use in a regular was of laundry.That would be about a cap and a half of the concentrat stuff.I also add in a shot ;-)(about a cup) of Baking Soad.I mix it up and allow the chemicals to disapate throughout the water than put in my underware and let it sit over night.I run it through the washer the next day using only baking soda to wash it the first time and only water the second time.I follow the same procedure for jeans or anything else I wer that could touch my genitals.I use only white bath towels that I wash after each use.I use my little procedure on the towels too! :-)I usually just use the hair dryer on cool setting to dry my genital area.I always wash my jeans,paints,underware etc..after each use.I have mostly elimated polyester slacks from my wordrobe.I have also been taking Acidophilus nightly with a bit of Dannon yogurt.After i followed the Acidophilus and washing my clothing well my symptoms DISAPPEARED!! The symptoms came back when I stopped being so clean with my clothing.I have found that some pads cause symptoms to increase.I have also discovered that some condoms cause a problem that lasts for days. Lifestyle Ultra Sensitive along with Astroglide have worked well. I found that my symptoms lessen when I removed my morning Orange Juice from my diet.I have honestly been testing this and that to see what helps.If your suffering try my plan....it's worth the time. :-) Oh..one more thing when symptoms are flaring try a soak in the tub with 2 packets of Aveena .Use the hair dryer on your genitals afterwards.AHHHHHHHHHHHH,relief.The Aveeno oatmeal soap is soothing too. ummm!Good luck!And don't stress! :-) If anyone would like to share information send e-mail to : fun4you@hotmail.com
CommentsYour web site is great. I would be interested in your listserve with you get it going!!
CommentsThank you, thank you, thank you, thank you! I have had what I think is vulvodynia for 8 years (the last 5 having been okay most of the time) and I've been following all the new articles and information and attention to this. Thank God. I was already somewhat better when I began reading about this - one of the worst things about it was feeling so alone, or crazy. Women don't have to feel this way anymore! Bravo for your efforts and continuing awareness of this ignored disease.
CommentsI have been suffering from vulvodynia for the past 8 months. I feel fortunate that I was diagnosed so soon. I'm sure information such as this web-site has helped bring attention to this matter. When I first went to the doctor, he continued to treat me for bacterial and yeast infections - same medication over and over again. Then he decided I must have a cyst. I did have one area that hurt worse than others. This area was removed - no help. I now wish I would have seeked a 2nd opinion. The surgery and the days afterward were VERY painful. Then the doctor treated me with more of the same medication and then with steriod injections directly in the vulva area - OUCH!! I suggest questioning your doctor if he/she suggests this. I switched doctors a few months ago and I intentionally sought a female doctor. I felt she would be able to empathize with many of the emotional problems that comes along with a problem like this. She checked me out, tried a few antibiotics and a acid wipe. When I continued to experience problems, she did some research and told me that I had vulvodynia. She has put me on a low oxalate diet and calcium citrate. My condition has improved. I'm able to have sex with the help of lidocaine and a lot of lubricants. I am still experiencing quite a bit of pain around my period and I don't know what else to try. I have experience back pain (worse at different times of the month) and I have periods of extreme fatigue. My doctor hasn't connected the 2, but I've noticed several comments that include these same symtoms. I'm also going to try Estrace cream and/or vitamin E oil. I guess its just trial and error! I'm a Christian and find that prayer is a tremendous relief. My best advice to all sufferers is to ask the Lord for help and to see this condition as a path to increase your faith, to help others and to learn about yourself. My next tip is to find a good doctor. Keep trying until you find one that understands you and is willing to atleast listen, do some research and try new things. I'll keep you all in my prayers! My husband and I are trying to get pregnant and I'm concerned about taking too much medication. If there are any women out there with this condition who are trying to get pregnant, please e-mail me at jusntime@ntwrks.com.
Comments
CommentsHi. I wrote a little while back. I just wanted to forward on a place that makes this great soap which I have found to be very gentle and non irritating to this condition. I have tried dozens of soaps and everything has aggrivated the condition. I have found when I use this soap sparingly and rinse quite well, I have no problems. It is from a place called Lush Times in Vancouver, Canada. They make all fresh handmade soaps. This particular soap is called Honey Waffle. It containes Vegetable soap, propylene glycol, honeycomb, ylang ylang, geranium oil, benzoin, crocin. It has a slice of pure BC honeycomb running through the middle. If anyone want's to try it, they have mail order (which I use all the time) 1-888-733-5874. |
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