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This is the very first Vulvodynia Guestbook
CommentsWelcome to the Vulvodynia Guestbook. Your Comments and Questions are valued and will probably lead to interesting and helpful reactions from other visitors. For Technical questions or to report problems, contact the webmaster at DryDoc@Conch.net. All other questions should be directed to Dr. Glazer. CommentsHello, I thought I would put an initial note in the guestbook inviting all visitors to the web site to leave comments and open a useful method of communication amongst those interested in this field as practitioners or patients. This website has just been opened and I look forward to many additions to it, including a professional registry, in the near future. Howard I. Glazer, Ph.D.
CommentsHoward, Hopefully, this sight can become a home for the discussion of a multidisciplinary approach to the treatment of women with vulvodynia. I encourage professionals to join in on the conversation so that we might all share and learn from one another.Thanks for your concern and time,Dee Hartmann, Physical Therapist, Naperville, ILHealthyexp@aol.com
CommentsHoward, I am a Master Herbalist, hypnotherapist and meridian therapist who consults and educates clients about alternative therapies. Recently, I had two women clients suffering from vulvodynia. Quite honestly, I had no idea what to suggest. However, I have been experiencing some good results with a natural product called Noni, the juice of the Morida plant that only grows in Hawaii and other tropical islands. Interestinly, both women had very good results with the pain lessening substantially within a few days use of the Noni Juice. One client claims the pain went from a 10 to a 2. It has not eliminated the pain, but appears to lessen it considerably. Clearly, this may have been a conincidence and may not be repeated with others. I mention this only as something others may want to experiment with and try on a larger number of vulvodynia sufferers. Additionally, I am talking to some experts in Essential Oils. Since essential oils are stronly antibacterial, anti inflammatory and antifungal, they may be worth investigating. I'll keep you posted on my research. Robert E. Miller MHH, CT, CH rem@ptdprolog.net
Commentsi have fibromyalgia..was under control for three years, then in Dec. it came with a vengeance...have been treated for yeast,etc. until i finally read an article about fm that lists vulvodynia as symptom...any info would be helpful
CommentsWe do know that there are several conditions that have a higher than expected co occurence with vulvodynia. These include Interstitial Cystitis, Irritable Bowel, and fibromyalgia. Similarities in these conditions may involve autoimmune elements, smooth and striate muscle instability, etc. We do not really know why these disorders co occur at a higher than expected rate.
CommentsHi, My name is Valerie and I think this Guest Book is a GREAT IDEA!I have had vulvodynia for almost a year now and am just now finally getting some relief. I have been to 3 gynecologists, 1 internal medecine doctor, and a naturopath over the last year. What i believe is helping me now is taking 75mg Elavil daily. The side effects really bite - extremly dry mouth, constipation and drowsiness, but its worth it to be out of pain. My e-mail address for now is Wowiecakes@aol.com if anyone would like to e-mail me. I am currently the Support Group Leader for the National Vulvodynia Association for the state of Indiana. So far there are 5 of us here in Indy, but i am sure there are many more who havent contacted the NVA. Please contact them if you are in need of support.
CommentsAs you can see this page is still under construction but I am excited about the possibilities. I am looking forward to a professional registry for those treating vulvovaginal pain, a forum to discuss difficult cases and a collaborative research proposals bulletin board. If you are visiting this web site and have any ideas, comments, or just want to say hello, please leave a comment so I know you were here. Thanks for visiting. Howard I. Glazer, Ph.D. howardg@mail.idt.net
CommentsI have been suffering from vulvodynia for 3 years. I was similar to the typical patient--I went to my gyn for treatment for 8 months (alternating antifungals with antibiotics) and when I didn't improve, and my main complaint was pain with intercourse, she decided my husband must be abusing me. I then went to 3 other gyn looking for a diagnosis, and finally after 18 months found a gyn who referred me to someone who knew what was going on. My pain is really no better, but knowing what it is, and that its not terminal is helpful. Sharon whitneyt@fiber.net
CommentsThis is apparently a problem, the cause of which has not been discovered. I believe it is caused by using a roller type chair (as used in offices) on carpet instead of a hard surface. Does anyone think this might be one of the causes? Those chairs get old and the seats, if thick padding, will deteriorate, becoming crumbly. Sitting on it for a while, you sink down to the hard base and the middle of the padding rises up and causes friction to the vulvar area. Has anyone else noticed this? Ora newarkmt@Worldnet.att.net
CommentsI have been going to a specialist for many years with chronic vaginal infections. For the last year or so I have had the same symptoms, but occasionally when I went to the doc, he said I didn't have an active infection. He recently diagnosed me with vulvodynia. He aked me if I had migraine head aches, back pain, irritible bowel,and if I am tired all the time. My answer was yes to all these things. He said the vulvodynia was a small part of what I have. He states that I have an Autonomic nervous system dysfunction. He put me on Elavil and wants me to continue on it for several years. Has anyone else had these same problems? My relationship with my husband has been strained at times because of this. I'd like to find an online group so that we can discuss this. If any one knows of one please email me at Sandbird99@aol.com Thanks
CommentsI am a 25 year old woman from Connecticut, who has been suffering from vulvodynia for approximately 4 years. I have tried many treatments including a low oxalate diet(no help!), topical Lidocaine regieme(little success), to homeopathic remedies and eliminating food allergies(the most success thus far!). It can be a very frustrating and depressing disorder but don't give up hope! I went through a very difficult time with my new husband, where I had fears he would go elsewhere. I also had intense feelings of inadequacy, that I was no longer attractive and dysfunctional in some horrible way. I worried that I would not be able to have children for some reason. Luckily, my husband has been wonderful and supportive most of the time, but unfortunately it takes more than that to get rid of it! On my current diet, I was tested for food allergies and eliminated all those food substances. At the same time I was taking small amounts of those allergic substances to desensitize my system. I was then also put on herbal remedies to help calm my central nervous system and fight off depression and anxiety. I am taking tri-salt combination powders twice daily to help buffer the effects of food allergy detoxification. I am also on a homeopathic suppository drug called Utilin, which is supposed to help heal my system in some way or another. I also take Lactic acid and some other homeopathic remedy called Female Tonic twice daily. In addition, the naturapathic doctor I am currently seeing believes that there are also chemical toxin causes. So I started using all natural products, everything from tampons, toothpaste, soap, laundry detergent to shampoo. All I drink is water basically, which has done wonders for my skin and body. I also began suffering from optic migraines last year in addition to my vulvodynia. I just recently went off my birth control to see if the hormones could be affecting me. This diet is not easy it's actually pure hell. Just imagine everything you could possibly enjoy from food gone! In my particular case I am not supposed to have tomatoes(my family owns an italian restaurant), dairy, yeast, alcohol, sugar, soda, citrus, pork, artificial sweetners just to name the hardest components. I am at the point where I am having doubts regarding the naturapathic approach. Some of the remedies have worked very well, where others I feel have been a waste of time and money. Keep that in mind all of this testing I have gone through cost anywheres from $350.00 to $500.00 a procedure and the medicine can be approximately $150.00 every month-not covered by insurance. Only my visits are covered after I fought with my insurance company and I still have a $20.00 co-pay every time I go, which is about every two-three weeks. There is definitely something in this naturapathic stuff I just want to see if anyone else is doing some of the same things with similar results. Because no one knows how to treat it and I can only trust my one doctor and that doctor is making an awful amount of money on me right now! So please anyone who has tried this approach or another which has seemed to work please contact me at MTS-13@worldnet.att.net
CommentsI am 32 years old and have suffered with recurrent vaginal yeast infections for the past 12 years. At times the doctors have said that they didn't see any abnormal amount of yeast in my vaginal area, but could see that my vagina was inflamed and irritated. My symptoms are constant burning, itching, and irritation, burning after urination, and at times a whitish film over the outer vaginal area. At times the irritation gets so severe that it is painful to walk. The symptoms flare horribly on the week prior to my menstral period. I have been on varous antifungal medications for the past four years (Nizoral, Nystatin, Diflucan, and now Lamisil). My OBGYN says that she's seeing the least amount of yeast in my vagina now that I'm on the Lamisil, but then I was on Diflucan for two years before that. The Diflucan worked well at first, but then it seemed to stop working as well. I am on a no sugar, low-carb diet, and have been prescribed Ampitriptalyne for the pain (25 mg - and it doesn't seem to help much). My question for the Doc's out there are this: When looking at a vaginal smear under the microscope, my OBGYN says that the yeast she is seeing look unusual. She has shown this to me, and the yeast (if that's what they are) organisms are still rod-shaped, but shorter. Some are straight, but others are curved, bent (at a sharp angle), or in a Y-shape. My doc says that she's seeing this in some of her other patients. Does anyone have any idea what this is? Is this some other organism, or has the yeast mutated? My doc is open minded, and would be willing to listen to other opinions. Also, she is hopeful that the new anti-inflammatory drug Accolate, which was recently approved for asthma patients may help with Vulvodynia inflammation. Please e-mail me with your opinions or just to correspond at Donnarie@juno.com.
CommentsI have had vulvodynia for 8 years--some years much worse than others. I am having tremendous success right now on Effexor (not Elavil), topical estrogen, birth control pills,and the low oxalate diet. There is a bulletin board on AOL, with key word Pen, message boards, women, vulvodynia as the path. Feel free to e-mail me with questions. Jodi Gehr J3Gehr @aol.com
CommentsHello, I am new to this bulletin board and very glad to see it. I have seen over 25 doctors including Mayo Clinic in Scottsdale to get a diagnosis. My initial symptoms began with a bladder infection, antibiotic treatment followed by 3 months of diahrrea, 23 lbs weight loss, severe fatige, shaky hands, kidney pain, vulva swelling, uretheral spasms and constant burning when urninating. I was tested for Intersticial Cystitis, Irritable Bowel, CT scan and they found nothing except a change in the lactobacillus rod shape. They were all connected instead of being seperate. No one could explain how this was important or what to do. I took Diflucan, Nystatin, no yeast diet, low oxalate diet, dring nothing but bottled water. I have been taking amitriptyline 40 mg/night with some relief. I think the diet and calcium citrate helps some too, but I still have discomfort and burning. I am also having accupuncture and doing visualization daily. The depression is difficult to deal with because my life has been so radically changed. I sincerely hope there is some smart doctor out there who will solve this painful mystery. I can be reached at JPCRAWF@aol.com or BRDRL@aol.com.
CommentsThis is a very good thing. I don't have an email address so will have to come back when I do.
CommentsI have new news on Vulvodynia. Dr. Benson Horowitz has done an intensive study on vulvodynia and will be publishing it in about 6 months. He has proven that the low oxalate diet is ineffective in the treatment of Vulvodynia. He states that vulvodynia is a symptom of a genetic disorder. This has been proven. The disorder can be manifested in 8 different ways. 1)Chronic Fatigue/sleep disorders 2)Irritible Bowel 3)Migraines 4)Interstitial Cystitis 5)Anxiety 6) Back pain 7)Decrease in autoimmune resistance 8)Vulvodynia The disorder causes and increase in norepinephrine uptake receptor. Tricyclic Antidepressants are norepinephrine uptake inhibitors. As such, they are the only true treatment for vulvodynia. You need to be on it for at least a month or two to see any change. When the symptoms are well controlled, it is possible to slowly get off the drug. You may experience one or more of the 8 manifestations of the disorder off an on throughout your life. But, you will know what it is and how to treat it should it recur. You will see this info published in about 6 months. If Elavil didn't work for you, there are other Tricyclics out there. You must find the one that is right for you and give it adequate time to work. He said the diet stuff is unnecessary. Hope this helps! Lisa
CommentsI started having trouble about a year ago and went through the usual, sorry I can't help you, etc. from my Primary Care Physician, another PCP, a Urologist, an OBGYN, and finally my OBGYN's Nurse Practitioner diagnosed a cystocele, (bladder hernia) after I told her that I thought I had something down there that was not quite right. It turned out that the cystocele did not show up before was because I was lying down during the exam and you have to stand up for the doctor to find it. Then she told me what to do while I was waiting to decide whether to have surgery. I was having a lot of allergy problems and deleting various foods from my diet ad nauseum, but she told me that I probably have a small leakage from my bladder and also she detected a small amount of fecal matter, all of which was causing me all kinds of pain and frustration. She instructed me to wash myself every time I urinate (I keep a box of diaper wipes - Baby Fresh unscented, hypoallergenic and alcohol free - in the bathroom as well as a jar of petroleum jelly,) and spread a small amount of vaseline around the area to prevent irritation. I tried that for a couple of weeks and it made a tremendous difference. Now I can eat normally, even tomatoes. The only thing I have to be careful about is pepper. So I don't eat pepper any more. But jalapeno's don't seem to bother me as much as the black pepper. Incidentally I am allergic to Vitamin E. That is something that makes my condition worse. I have decided to have the surgery and hopefully it will take care of the leakage. Good luck. Ora NEWARKMT@Worldnet.att.net
CommentsI've beeen battling vulvodynia now for about six years, although I had many of the other symptoms for most of my life - including chronic bladder infections and cystitis. After I'd been treated with accutane for acne caused by birth control pills, my symptoms became acute and I began the rounds of practitioners, diagnoses, diets, and frustration that others have described here. I became part of Clive Solomon's study of women who were passing high levels of oxylates in their urine and found some relief from the urinary tract symptoms of vulvodynia through taking calcium citrate (although I have to wonder about the possibility of my developing kidney stones from taking as much as 7 grams of calcium in supplemental form on a daily basis), but no improvement whatsoever in terms of the vulvar vestibulitis.
CommentsI am 25 and I have been suffering from Vulvodynia for roughly 9 years. All my life I have had bladder infections - and just general stinging and pain in that area. I have been to several Doctors and have tried cortizone shots in the glands of that area, steroid creams, the low oxylate diet with Calcium Citrate, etc. etc. I have had no relief. I was just recently married, and, although my husband tries to be understanding, we are both experiencing a great deal of stress and anxiety over this condition. I am regularly depressed, even as I am taking Prozac. It is extremely painful to have intercourse, but worse than that, my fear of the pain has caused me to shy away from almost all types of intimacy. I find it hard to be affectionate with my husband, and needless to say, this is causing a lot of problems in our relationship. I am desperate for help - not only for the physical symptoms, but for the emotional ones as well, as I feel the fear of the pain has emotionally scarred me. I would be happy to discuss this with any other sufferers out there or any Doctors. Thanks! Jstutzman@dow.com
CommentsI have had vulvar vestibulitis for two years (I am 23 years old). I have just had a vulvectomy and am finding that my symptoms of burning upon urination and sensitivity to touch are still ever present. Of course, with the surgery I had thought that this whole awful ordeal would be over. It isn't. I have just read everyone's comments searching for a positive ending and have found none. We are all suffering and are all trying to be patient. Our relationships are strained. Our partners try to be patient and understanding. I am afraid my engagement to my fiance may be jeoparized by this condition. I am not the same person I was when he met me. Thankfully, I have a pretty okay doctor, but the time waiting between doctor's appointments, dealing with the pain on a daily basis, trying to work fulltime with constant pain, and thinking about the future of my otherwise beautiful relationship with my partner is really burdening my spirit. Best wishes to all those searching for relief from pain - I hope your search is successful.
CommentsMy vestibulitis came on a little differently than most I've heard of. I purchased some all natural lavender drops at a Health Food Store and used a few drops in my bath water, as the bottle recommended. Out of nowwhere I got a yeast infection and vestibulitus symptoms all at once. I couldn't figure out why at first because I have absolutely no history of female problems. I never get either yeast or bladder infections. I had the lavender drops cultured and the results came back that they cause hemolysis, meaning destruction of red blood cells. My symptoms are pretty bad - I can't wear underwear, have to sit on a donut cushion at work - symptoms go back and forth from stitching, burning pain to feelings of inflammation in the lips of the vagina. I'm on a trial of neurontin to help with the burning, it seemed for about 3 weeks that I was just slightly better, but this week I have been doubled over with stabbing pain - as though there are knives in the lips of my vagina and even on the clitoris. I am hoping that since mine came on from a specific cause so quickly and dramatically that it will leave in the same manner. My doctor is planning to start me on biofeedback, however at the moment I think I'm in too much pain to even do biofeedback. I can barely walk, the stabbing is so bad. Dr. Glazer, I would appreciate any feedback you might have. Marcia MMClassAct@aol.com
CommentsHi,My name is Shelli and I sufferred with undaignosed vulvodynia for many years.I was misdaignosed and therefore mistreated by the medical community. I diagnosed my illness by watching a televsion show on vulvodynia.Then I found out abou the Vulvar Pain Foundation and Dr. Solomons. After many years of sufferring I am mostly pain free. It's amazing that I had to find this out myself. Nevertheless I feel the following things helped me. First of all It had come to my attention that if there was any yeast component to this conditon that it would alway fight anything else I tried to do. I read through my reaserch that six months of an antifungal medication is enough to kill any fungus. So I had my VV doctor put me on diflucan for six months being sure to monitor my liver enzymes. I also went on the lo oxolate diet. In addition I had my urine teste by Dr Solomons. He had put me on 5 clacium/magnesium tablets daily. I found that anything over 3 tablets was acting like an irrtiant so I designed my own program.I take 3 calcium citrate tablets daily and two calcium carbonate with magnesium tablets. The calcium in the form of carbonate is not as much of an irritant and I am still getting the benefit of removing the oxolated from my body with the calcium. Staying off artificial sweetners is a must.Massage helps if it is included in your insurance program.Anyone interested in hearing more about my program can email me at sin1234567@aol.com Take Care-Shelli
CommentsI think this is an incredible idea. I have now suffered from vulvodynia for three years and it has had a devastating effect on my emotional life and self esteem. It has taken me three years of testing and doctors for me to start to believe that I do not have an STD or some other infectious disease. I always had a problem with yeast infections, but they never interfered with my day to day life. I still think yeast plays a role in this somehow. I have been put on Diflucan and tri-cyclic anti depressants - I have had some relief, but I still go through a flare up every month before my period, so for about 2 weeks per month, I have trouble sitting still and concentrating. I have noticed that stress exacerbates the problem, as does sitting. I do not notice it very much when I am walking around. I have developed some kind of nerve dammage, so in addition to burning, itching and rawness,I can feel the nerves moving over the whole area which makes it feel like I am itching below the surface. I am going to a pain clininc and a new doctor this week. I am finding it a big relief to read about others who have this disorder and will try some of the techniques mentioned here. Thanks. If anyone would like to share information, or just chat, my email is barbara.patterson@sympatico.ca.
CommentsI'm 36. I've had Vulvar Vestibulitis for three years. At first they said I was allergic to semen :( As soon as I stopped taking the pill my symptoms began to clear up. Then I broke up with the boyfriend. Two years later, I'm okay, but every once in a while I feel like I'm getting it again. It seems like most of the women who've written are on anti-depressant drugs. I take Effexor. I've wondered if you've linked VV to other physical/emotional conditions: colic, anorexia, Stephen Johnson's syndrome. It seems like we all have chronic bladder and yeast infections.
CommentsI'm 36. I've had Vulvar Vestibulitis for three years. At first they said I was allergic to semen :( As soon as I stopped taking the pill my symptoms began to clear up. Then I broke up with the boyfriend. Two years later, I'm okay, but every once in a while I feel like I'm getting it again. It seems like most of the women who've written are on anti-depressant drugs. I take Effexor. I've wondered if you've linked VV to other physical/emotional conditions: colic, anorexia, Stephen Johnson's syndrome. It seems like we all have chronic bladder and yeast infections. Wendyell@AOL.com
CommentsI am interested in new information on thi subject. Please send to trishyn@aol.com
CommentsDate: 6-8-97 Time: 4:00 PM Comments: I am 19 years old and have gone two painful years with undiagnosed vulvodynia. Just recently my gynecologist diagnosed me with this disorder. I have had chronic yeast infections since birth (hereditary) and began taking birth control pills two years ago because my fiance` (who is still today) wanted to engage in sexual activity. After the first month I began to experience slight pain upon sexual intercourse. After three months, sexual intercourse was completely impossible, and still is today (two years later). I went to a numerous amount of physicians only to hear it was yeast infection, a bruised pelvic bone, or "just in my head" because I was nervous. I went through much emotional distress, anxiety, and hopelessness. My family and I have spent over $2500 dollars on doctor bills and laboratory tests. I had everything done on me, including numerous pap smears, pelvic exams, two ultrasounds, an upper GI, an IVP, and a Barium enema. Until three months ago, when my doctor finally diagnosed me with vulvodynia, I was hopeless and felt I would never have sexual intercourse again (much less have children). Today I am almost through with my prescription of Zovirax (which has helped some) and seem to be improving slightly. It is still impossible for my fiance` and I to have intercourse. These two years have been a huge burden and stressor to our relationship. Although, he has been extremely sympathetic and understanding, we continue to have problems. We hope to marry next summer, but without being able to engage in sexual activity I see no reason to even plan a honeymoon. I struggle with this disorder physically, mentally, and emotionally. As a young woman, I feel it is affecting me in ways that will change my life. I would appreciate all the information you can give me on counselors in my area that not only deal with the depression associated with vulvodynia patients, but also with strained relationships. I live in the area close to Louisville or Bowling Green, Kentucky. I would appreciate all the information you can provide me with. This web site is a wonderful idea. Thank you. Please e-mail me at: bscott@scrtc.blue.net Sincerely, Natalie Scott
CommentsI've had vulvar vestibulitis for about five years now. At first I was told that it was simply a yeast infection, as I was always on the yeasty side. But after a year of this, I switched to a different doctor. It took almost three years to get diagnosed. Like the other comments before mine, I was told I needed psychotherapy and that I had STDs that were just undiagnosed. If I hadn't been all the way through college, I may have switched to medicine, just to solve my own condition. Almost two years ago, I had an operation for it, but it didn't help at all. Intercourse is extremely difficult and it's put strain on my relationships (Now I just tell them right off the bat!) This website is a Godsend as many women don't even know what they're suffering from. I was lucky when I entered "vulvar vestibulitis" in the search engine. Thanks Dr. Howard for this site:)
CommentsHi, I am the support group leader for the NVA (please look under Dr. Glazer's Hot Links) for the Boston Area. I have had vestibulitis for about 4 years. I am 31 and married for about 4 years as well. I think one of the best things I did was to get in touch with a support group that deals with vulvodynia. It is another great place to exchange information about this syndrome and to learn about doctors that specialize in treating it. Unfortunately there are not enough doctors out there like Dr. Glazer who are knowledgable about this condition although the numbers are improving! It is important to try to be as informed as you can about all the different types of treatments available to you. The NVA and other organizations are excellent sources of information. Support groups are also available through these organizations. Dr. Glazer, I think this is a wonderful web site. Is there any way one can find medical journal literature on the net or are they not published that way? Also, I think I read about some of your credentials. Did you list all of them? Thanks, Kathleen Guinta Guinta1@aol.com P.S. If anyone would like to contact me for more information regarding the NVA please feel free to e-mail me.
CommentsThis website will soon have several additions including 1) a professional registry for service providers specializing in treating vulvovaginal pain 2) A case history Form for professionals to discuss difficult cases 3) A listing of current research projects which I am involved in 4) a Bibliography of the medical literature. All the additions are completed and await changes in the server that hosts this website in order to upload them. Have patience. Thanks for the very kind entries all of you have made. Howard Glazer Ph.D.
Commentshi! thank you for this web site. i am new to the internet so i hope this gets thru. i have been suffering from volvodynia for about 4 years. i went from doctor to doctor without proper diagnosis. when i was finally diagnosed and after trying several things that did not work, i saw a doctor that recommended laser surgery to the affected area. unfortunately for me,i went thru with this surgery that just made my condition 1000% WORSE. TO THIS DATE I AM STILL IN SEVERE PAIN. I'VE SEEN A NEUROLOGIST AND SHE HAS STARTED ME ON DESIPRAMINE AND NEURONTIN. AFTER MY SURGERY THE SKIN THAT WAS LASERED WOULD NOT HEAL. IT CLOSES, BUT IF I TRIED TO HAVE INTERCOURSE WITH MY BOYFRIEND IT WOULD TEAR OPEN AND BLEED. WE HAVE NOT BEEN ABLE TO HAVE INTERCOURSE FOR OVER A YEAR. I HOPE THAT THIS WILL HELP ANYONE OUT THERE PLANNING TO HAVE SURGERY. IT DOESN'T WORK! I AM ALSO ON ESTRACE CREAM TOPICALLY TO SEE IF THE SKIN TOUGHENS. HAS ANYONE ELSE EXPERIENCED LASER SURGERYAND IT'S CONSEQUENSES.IS THERE ANY ONE WHO KNOWS WHAT MIGHT HELPHEEL THE LASERED AREA? PLEASE E MAIL ME AT FOURQUET@MAIL.GTE.NET .
CommentsI am 28 years old and have suffered from vulvodynia for almost 3 years. I went from one doctor to another (trying anti-fungals, topical steroids and a partial vulvectormy) with no success. Just when I was coming to the "end of my rope." I came across information about the Vulvar Pain Foundation and Dr. Solomon's research. I know from reading other people's letters that many of them have had little or no benefit from the low oxalate diet and calcium citrate. I am not one of those people. I am SUBSTANTIALLY better after 6 months (It took 2-3 months to see improvement, but after 2 years of pain I am much more patient.) using this and the Estrase cream. I would encourage people to check into this treatment option. I credit it with (literally) saving my life. You may e-mail me at tracy_herson@stservices.net
Commentsthank you for this website...i was beginning to think maybe i was losing my mind. ..in 1990, i first approached my gyn about this problem...he told me that after my 6th miscarriage, after my dad died, after finding out my husband was type 1` diabetic, that i was simply showing signs of stress, that there was no infection and i just needed to calm down...it is 7 years later & several doctors later & i am still going crazy after each session with my husband...by process of elimination i have given up on tomatoes, citrus, cafeine, and a few other items...what can one do to relieve the burning and speed the healing???
CommentsHeh, Dr. G! It's your old friend Marcia Powell in Houston. I'm the one that wrote you (and e-mailed you) the four page letter after reading your study that was out on the net. You e-mailed me that there was a 40% overlapping rate between IC and vulvodynia and to try to fight my insurance company over the approval of biofeedback. Well, it's been over a year and I'm still fighting. Lost the battle with CIGNA and switched carriers in January, so now I'm battling NYLCARE. Keep your fingers crossed. I was so happy to see your web site. This is "exactly what the doctor ordered"! We, the sufferers, needed one place to gather. I would love to see more practitioners out here, though. They're as lost as we are when it comes to the diagnosing and treatment of vulvodynia. Dr. Glazer, I myself was considering creating a website containing a questionnaire. Who is gathering information on all of us? Let's see, we have how many doctors in probably every city across the world treating a handfull of people. These handfulls add up, but who's compiling our backgrounds. There has got to be something that's linking us all together. I'm in contact (via e-mail) with several women in the U.S. and abroad and we have discovered some strange similarities. I would love to discuss these with you. Maybe you could use this information when creating a Patient Profile? My concerns about Vulvodynia? In the next 10 years I see the rate of divorce increasing and the rate of births decreasing. Vulvodynia = Painful Sex. Painful Sex = Single Women and No Children. Would you want to lead a celibate life? What about if you were only 21? Check the ages on these women! It's sad -- very sad. My thoughts about your web site? Again, congratulations on finally creating something we all need. Support is great -- a cure would be even better. No, I take that back! Relief would even be O.K. Hope to hear from you! powell@nol.net P.S. Months ago, I wrote ABC News a very informative letter. Heard back yesterday that they've forwarded it the producers at Good Morning, America. Maybe that would help get the word out. WE HURT!!!!!!
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.
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