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CommentWelcome to the twelfth vulvodynia guestbook.
CommentTo Jen regarding neurontin -- I took Neurontin for almost a year. It didn't take the pain away, but seemed to take the edge off of it a bit. It made me more than sleepy -- it made me extremely groggy and confused. So I only took it at night. And my doctor suggested taking it a couple of hours before going to bed, which helped me wake up a little more alert. But I've been gradually weaning myself off of it and now no longer take it. I didn't feel it was helping that much and I was nervous about taking that serious a drug for so long. You can also try working up to whatever dose your doctor suggests. I made mine give me 100 mg. capsules, in addition to the 300 mg. capsules she initially prescribed, so I could gradually increase the dosage myself.
CommentTO LOIS- BOY DON'T I UNDERSTAND THE IRONY OF OTHERS COMPLAINTS (THOSE WITH SUCH TROUBLE AS WHICH EXPENSIVE CAR TO DRIVE)! I'M NOT ANGRY BUT I DO SIT ON THE PITY POT FROM TIME TO TIME. AND I HAVE ALSO DREAMED ABOUT MAKING LOVE TO MY HUSBAND IN A NATURAL STATE, YOU KNOW, NO PREPARATION, NO CRINGING FROM THE PAIN, NO JUMPING UP THE MINUTE IT IS OVER TO PUT A COLD WASH CLOTH OR ICE ON MY VULVA.. OH TO BE ABLE TO HAVE SEX LONG ENOUGH TO GET REAL ENJOYMENT OUT OF IT. MY HUSBAND IS SO UPTIGHT THAT HE IS CAUSING PAIN, HE ALWAYS GETS IT OVER QUICKLY. WE USED TO CUDDLE WRESTLE AND PLAY, BUT THAT IS ALL GONE. I HAVE BEEN MARRIED FOR 22 YEARS THIS JULY AND HAVE HAD VULVADYNIS FOR THE PAST 17 YEARS, BUT WAS NEVER DIAGNOSED UNTIL 3 YEARS AGO AND BELIEVE ME YOU WILL END UP KNOWING WAY MORE THEN THE DOCTORS YOU WILL GO TO SEE AND ALL BECAUSE OF THIS SIGHT. THIS WILL ALSO BE YOUR BIGGEST SOURCE OF ENCOURAGEMENT AND SYMPOTHY, AND YES SOMETIMES EVEN HUMOR. WE NEED TO STAY IN TOUCH WITH THIS SIGHT ALL OF US SO WE ALL HAVE SOMEONE TO LEAN ON WHEN THE GOING GETS TOUGHER THAN WE THINK WE CAN HANDLE. I HAVE CONSIDERED SUICIDE MORE THAN ONCE, BUT TRY TO HANG ON FOR THE BIG CURE!!! BE SURE NOT TO FORGET TO POST IF YOU FIND SOMETHING NEW THAT HELPS YOU, AND UNTIL THEN CHIN UP, KNOW YOU ARE NOT ALONE, AND KEEP IN TOUCH.
CommentI first told my story (bdewitz) in the second guestbook in July (??) of '97. I was still married for the second time, and still hopeful that there might be some relief for this wretched VVS. Since that time, I have been through my second divorce, and I have pretty much given up the illusion that I will ever have intercourse again. It has been nine years, and I have learned that it is relatively easy to live without sex, as pain is a pretty potent inhibitor. I rarely ever discuss the problem--no one seems to have any new information, and even my very closest friends are not terribly sympathetic. The pain every time I urinate, which is very frequently (it burns like fire) and the fact that it often hurts just to sit down, are not helped at all by their lectures about how I am lucky that I don't have cancer or some terminal or progressive disease. I have not been treated for VVS for many years now, as there is no one in my area that my insurance will cover who even knows what VVS is. If I could afford to pay out of my own pocket, I could go to Madison, WI, an hour away, and perhaps be treated, but all of my "disposable" income (anything left over after I buy groceries and pay the bills) goes to pay for my 18 year old son's mental health treatment, which of course, is NOT covered by insurance. (We all know the head is not connected to the rest of the body.) The quack who butchered me in the first place back in 1991 has long since retired, and I have let go of much of the anger that consumed me for years. My condition has remained pretty stable, although I have some new and very unpleasant things happening. A recent yeast infex that presented no usual symptoms caused such vaginal and rectal pain that my doctor had NO idea what was wrong with me until he physically examined me. Now THAT hurt. An excruciating, intermittent, pulsing pain in both the vagina and rectum lasted two days and sleepless nights, and finally subsided after taking Diflucan for two days. Can't help but wonder what role yeast plays in this mess, as I have had so very many infections over the years, and am now resistant to many treatments. A month on Diflucan finally cleared up a vaginal yeast infection that eventually attacked my whole system last winter. And although my second marriage never included intercourse, divorce was more a result of my ex's inability to deal with my son's mental illness than anything to do with an incomplete sexual relationship. The lack of intimacy surely did not help matters any, though. Enough rambling. Thanks for being here.
CommentSince you all enjoyed seeing a copy of my letter to my OBGYN, I thought I'd show you a copy of the letter I'm sending to my college health service, which has an online bulletin board for sex questions. Maybe some of you will want to write to doctors or educators who have made your search for answers more difficult, and if you do feel free to plagiarize from me all you want. Anyway, here's what I wrote: "Why is it that you've got dozens of archived messages from women who have pain during sex and not a single one of your answers mentions anything other than vaginismus or some sort of infection? Is your clinging to vaginismus just a sign that you believe women's pain during sex must be psychologically caused if you can't find an infection, or have you just never heard of vulvodynia and vulvar vestibulitis? How about lichen planus? Pudendal neuralgia, anyone? Is it because most of your students are white and you think white women are afraid of sex? What are you DOING? By the way, your response to a woman who write in asking is kegel exercises could help her realx in which you tell her they will do the opposite is TOTALLY off base. Why are you pretending to be an expert when obviously you haven't picked up a journal in the past ten years? You are probably doing more harm then good and should refer these patients to a vulvar pain clinic and not just the GYNs at Health Services who think incomplete or wrong information is better than admitting ignorance."
CommentHi Ladies, Well I have a request. I am asking for as many emails as possible with small bios and description of vulvodynia. What I am going to do with them is personally stand by the stagedoor of the Vagina monologues when Donna Hanover Guiliani is in it in May and see if I can get her to read the emails and I am also enclosing a newsletter and some websites. If she is intersted enough in being in a play about the vagina perhaps she might be interested in helping us. You don't need to use your main email address. In fact I suggest you open a yahoo or mail.com account. Lat names are not important. Please sign your first name and the state you live in. I think this could be the help we really need. having a warm body infront of her handing this packet to her adds to the emotional side of this disease. It is a strong way to get some attention and it might just work. Since I live in NYC I am going to do this. I hope I can have some help from you. I canmake no guarentees. But I will do my best and I will make sure this packet gets into her hands. PROMISE! Please send a short email detailing your experience to vulvodyniapain@aol.com I know you all know how to write since you left a post here. Thanks Ladies! Lauren vulvodyniapain@aol.com
CommentHi Ladies, Well I have a request. I am asking for as many emails as possible with small bios and description of vulvodynia. What I am going to do with them is personally stand by the stagedoor of the Vagina monologues when Donna Hanover Guiliani is in it in May and see if I can get her to read the emails and I am also enclosing a newsletter and some websites. If she is intersted enough in being in a play about the vagina perhaps she might be interested in helping us. You don't need to use your main email address. In fact I suggest you open a yahoo or mail.com account. Lat names are not important. Please sign your first name and the state you live in. I think this could be the help we really need. having a warm body infront of her handing this packet to her adds to the emotional side of this disease. It is a strong way to get some attention and it might just work. Since I live in NYC I am going to do this. I hope I can have some help from you. I canmake no guarentees. But I will do my best and I will make sure this packet gets into her hands. PROMISE! Please send a short email detailing your experience to vulvodyniapain@aol.com I know you all know how to write since you left a post here. Thanks Ladies! Lauren vulvodyniapain@aol.com
CommentHas anyone tried Neoronton to treat their pain? A doctor friend of mine suggested it as a new treatment for chronic pain that may be neurologicaly based. (His statement was that this may be "all in my head," not in a psychological sense, but a neurological one.) Anyone?
CommentHas anyone had any gynocological side effects from using Estrace or other topical estrogens? Several months ago, my gynocologist prescribed Premarin, which helped reduce the pain. But a few months afterward, my periods became really irregular and painful and I developed uterine polyps. My gyn said they weren't related -- that the topical estrogen doesn't get into the system. But I stopped using it anyway and few months later, things were back to normal. Recently, I saw a nurse practitioner that specializes in VV -- she prescribed Estrace which I know has helped many woman. I expressed my suspicions/concerns about Premarin, which she immediately dismissed. So thought I'd give Estrace a try. (At this point, I'll try anything.) It has helped the pain tremendously, but once again my periods seem to be affected and this time, my body thermometer seems to be out of whack. I'm constantly too warm and often sweaty, which is completely unlike me. (A bit like what I assume hot flashes might be like. I'd suspect I'm having early menopause, but this started a week or so after I started using the Estrace.) Anybody else have side effects like these? What did you do? kathy
CommentHello Is there any one that can HELP ? All that i have read leaves me to believe that I will have this PAIN for the rest of my life ! Is this true or can some one HELP ? It seemed to start after i had my 2nd child. I kept thinking that the doctor left something in the tearing ,or sewed the nerves together ? It`s been 2 & 1/2 years with this pain, countless doctors / specialists. numerous pills creams ect. They seem to pass me back & forth to a GYN to BOWEL doctors to surgery/ tests .I cant count the times i have been tested for ALL the kinds of infections...... H E L P ME PLEASE...I`AM GOING CRAZY ...............
CommentHello Is there any one that can HELP ? All that i have read leaves me to believe that I will have this PAIN for the rest of my life ! Is this true or can some one HELP ? It seemed to start after i had my 2nd child. I kept thinking that the doctor left something in the tearing ,or sewed the nerves together ? It`s been 2 & 1/2 years with this pain, countless doctors / specialists. numerous pills creams ect. They seem to pass me back & forth to a GYN to BOWEL doctors to surgery/ tests .I cant count the times i have been tested for ALL the kinds of infections...... H E L P ME PLEASE...I`AM GOING CRAZY ...............
CommentIf there is anyone in Australia reading this guestbook who has vulvodynia please email me. I would really like to discuss doctors, treatments etc with someone in the same country. Also do any of you find that your vvd is affected by your menstrual cycle? I think mine is. And is that harder to treat than vvd caused by other factors such as oxalates (you can try the diet) or tense muscles (you can try biofeedback). Has anyone been successfully treated for vvd caused by hormone problems? What was the treatment? I would like to know all my options before I seek medical advice as I know that the wrong treatment can make vvd worse.
CommentI really enjoy reading your entries as you all offer so much support to me and I can relate to so many of your entries as I have experienced exactly the same thing! Thank you, Lois, (4/20 entry in previous guestbook) for the entry on the upset boss who had to drive the mercedes instead of the jag! I had a good laugh. Since I have been diagnosed with VVD, I often contemplate on how trivial my previous problems were (which at that time I thought were huge!) Obviously, your boss has never had any serious problems yet in his life! However, it's easy to be harsh when you compare your situation with other people but it's probably unfair as everything is relative to a person's experiences which in the game of life are very unpredictable. I am sure that most people at some stage in their lifetimes experience some sort of heartache that is prominent for them. I try and deal with them the best way I can. Lois, I remember (vaguely now) the days when I enjoyed spontaneous love-making with my partner. Now they are planned to correspond with when I'm feeling not as bad down there (which isn't often). To Tammy who posted on the 4/21, YOU ARE NOT ALONE. I am amazed that there are so many of us and we are now onto the twelfth guestbook which is why something must be done about it! If it were not for this site where we can share our experiences, I am sure I would be suffering much more stress. When I am down, I do try and think that I am not alone in this and that we are all there for each other. Although it doesn't always stop me from having a down time (I tell myself that this is normal when you experience illness/ stress). Only last night, I thought to myself that I would love someone to hand me a pill so I could never wake up! But this morning when I got up I thought that I was very stupid the night before. In my down moments, it is easy to think of a way out but then I am determined to not let this drag me down as hard as it is. So, yes, Tammy, I have considered suicide at times. Another thing stopping me is that my mother committed suicide nearly 4 years ago so I am determined NEVER to do it. It only leaves behind a trail of heartache and people close to the person feeling masses of guilt about what they could have done/or did not do to stop it from happening. I miss my Mum so very much as I know that she would have helped me cope with VVD. You can't relate to anyone else in the world like you can with your mother and I don't have her to turn to (although I often walk around at night talking to her as she has shown signs that she is there for me). If anyone else has experienced someone close to them suiciding I would like to correspond with you. Like Barbara, I have also experienced people close to me saying that it's not like I have a terminal illness so I should cheer up. At first, when they said this I got very angry but now I try and turn it around as they are trying their best efforts to cheer me up. They don't think of VVD as being that bad as they do not have it so they don't know what it's like! Last week at work, however, their comments rung home to me as I had a meeting with a work colleague who is losing her battle with cancer. I then thought that you need to make the best out of your life with whatever happens while you are here. There is always someone worse off than you and Barbara (4/22), my heart goes out to you and everyone else whose partner has left them because of any vulvo/vaginal problem. Barbara, I know you said that it wasn't because of this but you made me feel that I have not got much to complain about as you cope with a mentally handicapped child as well. I don't think men can handle times of crisis with all the emotions experienced that women can handle so much better unless they can fix it (just like John Gray's "Men are from Mars..." book) so they walk away. My partner feels very frustrated about my condition as he can't fix it! Good on you DK who posts here regularly for alerting medical personnel of this and other vulvo/vaginal conditions. It's people like you who inspire us to go on fighting. Thinking of you all...take care
CommentI really enjoy reading your entries as you all offer so much support to me and I can relate to so many of your entries as I have experienced exactly the same thing! Thank you, Lois, (4/20 entry in previous guestbook) for the entry on the upset boss who had to drive the mercedes instead of the jag! I had a good laugh. Since I have been diagnosed with VVD, I often contemplate on how trivial my previous problems were (which at that time I thought were huge!) Obviously, your boss has never had any serious problems yet in his life! However, it's easy to be harsh when you compare your situation with other people but it's probably unfair as everything is relative to a person's experiences which in the game of life are very unpredictable. I am sure that most people at some stage in their lifetimes experience some sort of heartache that is prominent for them. I try and deal with them the best way I can. Lois, I remember (vaguely now) the days when I enjoyed spontaneous love-making with my partner. Now they are planned to correspond with when I'm feeling not as bad down there (which isn't often). To Tammy who posted on the 4/21, YOU ARE NOT ALONE. I am amazed that there are so many of us and we are now onto the twelfth guestbook which is why something must be done about it! If it were not for this site where we can share our experiences, I am sure I would be suffering much more stress. When I am down, I do try and think that I am not alone in this and that we are all there for each other. Although it doesn't always stop me from having a down time (I tell myself that this is normal when you experience illness/ stress). Only last night, I thought to myself that I would love someone to hand me a pill so I could never wake up! But this morning when I got up I thought that I was very stupid the night before. In my down moments, it is easy to think of a way out but then I am determined to not let this drag me down as hard as it is. So, yes, Tammy, I have considered suicide at times. Another thing stopping me is that my mother committed suicide nearly 4 years ago so I am determined NEVER to do it. It only leaves behind a trail of heartache and people close to the person feeling masses of guilt about what they could have done/or did not do to stop it from happening. I miss my Mum so very much as I know that she would have helped me cope with VVD. You can't relate to anyone else in the world like you can with your mother and I don't have her to turn to (although I often walk around at night talking to her as she has shown signs that she is there for me). If anyone else has experienced someone close to them suiciding I would like to correspond with you. Like Barbara, I have also experienced people close to me saying that it's not like I have a terminal illness so I should cheer up. At first, when they said this I got very angry but now I try and turn it around as they are trying their best efforts to cheer me up. They don't think of VVD as being that bad as they do not have it so they don't know what it's like! Last week at work, however, their comments rung home to me as I had a meeting with a work colleague who is losing her battle with cancer. I then thought that you need to make the best out of your life with whatever happens while you are here. There is always someone worse off than you and Barbara (4/22), my heart goes out to you and everyone else whose partner has left them because of any vulvo/vaginal problem. Barbara, I know you said that it wasn't because of this but you made me feel that I have not got much to complain about as you cope with a mentally handicapped child as well. I don't think men can handle times of crisis with all the emotions experienced that women can handle so much better unless they can fix it (just like John Gray's "Men are from Mars..." book) so they walk away. My partner feels very frustrated about my condition as he can't fix it! Good on you DK who posts here regularly for alerting medical personnel of this and other vulvo/vaginal conditions. It's people like you who inspire us to go on fighting. Thinking of you all...take care
CommentLeanne I understand from your post in the 11th guestbook that you are in Australia too. Could you please email me?
CommentToday the show THE VIEW talked about vulvadynia in the Grill the Gyno segment. This Gyno validated publically the suffering of vulvadynia patients. Yeah!! Though they did not mention any contact numbers or websites for further info. I just sent them an e-mail suggesting they do so. Others may want to email them too. ABC THE VIEW. As a long term sufferer (10+ years), who had many of the radical treatments done, (Bartholin gland removal, vestibulectomy, lasered), I am so glad that this debilitating disease is now being publically discussed. It's not in our heads, it's in our bodies and shame on those medical practioners who dismissed us.
CommentJC: I was just going to post the same message you did about The View. I am also going to email them and urge other women to do the same!!!
CommentJC: What is the email address for THE VIEW? I will send them a message ASAP as well. Also, for the above post about hormones relating to VVD, I have recently (in the last 6 months) stopped the Pill, and I have had no symptoms other than right before my period every month. I have even had sex a few times with minimal discomfort...although I always use PLENTY of lubrication. As for treatments, I am not sure. Since I seem to be okay for the most part, I am not using much at this point, and I have not heard of much to help with the hormonal component. Other than stopping the Pill. I have a specialty doctor right now that suggests using Boric Acid Capsules, filled 2/3 full, right before bedtime. However, if you are really raw, this may burn in the middle of the night. This happened to me only once, though. My doctor says that it helps to balance out the PH in the vagina. I guess the VVD messes up the balance in that area. But I do not know if this relates to the hormones or not. Hope this helps. It does help me. Lastly, is there anyone from the Los Angeles/Orange County area that posts here? If so, I would really like to talk. Please email me. Also, if anyone else needs a friend, please feel free to email me as well. I could use the support myself!!! Thanks...take care.
CommentHi to all! I caught "THE VIEW" this morning too. I did not catch all the email address, but it is abc.com/theview I think. Yes, I was so excited to hear this young Dr speaking about the long-term serious pain we suffer. He also stated that there is no cure. He also mentioned the trips we all take to the Dr where in time, they (Drs) hope we just don't come back cause they can't fix the problem. I almost jumped up and down to hear VVD and VV on TV. Also, if you get to THE VIEW'S web site they said that if anyone had anyquestions for this Dr (can't remember his name) that you could email him through THE VIEW SITE. I plan email THE VIEW myself tonight, maybe this is the break we have been waiting for. All take care and hang in there! There is hope! There has to be! Vernie
CommentI am twenty-six years old and have had vulvodynia since I was nineteen. Although we share a number of symptoms I don't think we all have the same thing. I saw Dr. Willems in San Diego and did the estrace treatment. I know women it helped; I wasn't one of them. Ditto for the diet, ditto for the tricyclics. In my case I think the problem is yeast, even though I frequently don't culture for it. My symptoms began with a course of antibiotics; they always return when I take antibiotics. Two things made me painfree -- I don't think either alone would have. The first is a long term use of diflucane. The second was physical therapy and biofeedback. I did this with a wonderful practitioner in Sacramento named Risa MacDonald.
CommentHello! I just went to THE VIEW site, but had problems getting into the "Ask your Guest" site. Maybe they are just busy. The name of the gyno is Dr Nicholas Tarricone. I'll try later to email. Does anyone know if you have to register befor emailing or commenting? Anyway, I could not get through to leave a message. It could be me, I'm not real good at this computer stuff yet.
Commenthttp://www.abc.go.com/theview/show_recap/health/health_0426.html this is the view segment
Commenthttp://abc.go.com/theview/main.html this is the page you use to send the view an email click send email
CommentHi to Trace (above post 4/26)...I sent you an email last Thursday but it obviously didn't reach you. I have forwarded it again today and look forward to hearing from you.
CommentHi Leanne. I still haven't received your email. I don't know why as this IS the correct address that I'm giving. I guess the Xoom server must be down. Try trianek@hotmail.com - that's one of my alternative addresses. I look forward to hearing from you.
CommentHello I am from Sweden and I just wanted to say that we "vulva ladies" exist all over the world. I have and an operation for my vestibulit and I am feeling much better. Keep on fighting, ladies!
CommentI didn't see "The View" but I did link up to the website. Gee, he says there's no cure. I want to contribute something on behalf of all of us, but what do I say -- that I've been to a zillion doctors over the past 12 years, been given upteen pills, perscriptions, treatments, and here he says there's no cure! I am absolutely devastated and angry because I'm positive that most of these doctors we've been going to thinking "he" might be the one whose going to make us better knew there was no cure. I'm sorry. It was just upsetting to read what he said.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forward on vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentWow! I guess I don't quite have the mechanics here down. Sorry to bombard the list -- I only meant to send once. To Lois: no, there is no cure. But there are lots of treatments that work for lots of people and, with luck, the symptoms can be managed. I went from doctor to doctor for six years until I found Dr. Cox at student health in Santa Barbara. He told me that he thinks any number of irritants can trigger the disease, but for most women, particularly most young women, the problem is yeast. I'd not been treated for yeast since it never showed up in my cultures. But a hefty three month course of diflucan took my pain away completely. Whenever I have a flare-up another dose resolves it. I do know there are resistant strains of yeast and I've been lucky not to get them so far. While traveling among doctors I met women who were entirely improved on the diet, others on estrace, and my group leader on Elavil, though none of these worked for me. Does anyone have experience with capsuican?
Comment
CommentHello everyone! I had suffered from Vulvodynia for 5 years due to a misdiagnoses and laser surgery that damaged my vulvar tissue. I tried topical creams, elavil, difulcan, changing detergents, oxilate diet and physical therapy all which resulted in failure.I felt so depressed because I could hardly have intercourse with my husband. Plus it wasn't something I could really dicuss with people because it's not a disease that a lot of people are firmiliar with. Finally last August I had surgery and have been 100% cured ever since. I had a procedure done where I had the damaged, painful vulvar tissue removed and new tissue grafted from the vaginal wall. I can't remember the technical name of the surgery so I hope you understand my explaination. This surgery worked for me because they knew the cause and my pain was only in the area where I had the laser. I never thought I would see the day where I would be pain free again but it happened so PLEASE don't give up hope!!!
CommentHello. A year ago I was diagnosed with VV. As all of you know it's a horribly depressing condition that can lead to all sorts of life problems. I was very lucky to have a mild case--NOTHING like some of you have spoken of. In fact, reading your letters often makes me feel like crying; both for how aweful I feel for you and how lucky you make me realise I am. One of the most depressing things about this disease is that you feel SO alone. Like you're the only person on Earth that could possibly have such a ridiculous and debilitating condition. And how do you find others to talk to? It's not a lunch-room conversation topic generally! I felt lost until I found this web site and people to talk to, and share ideas with. And after reading so much about VV I was dis-heartened to notice how FEW people seemed to be saying they were "cured" or even that they had improved significantly. I made a vow that if I ever got better, or God willing, became cured, I would write and tell you all. Just to give you some hope that there ARE people out there who *EXIST* who've gone into remission. (I hesitate to say 'cured'). There IS hope. We DO exist. I'm living a virtually normal life now, only a year later. Like I said...i was blessed with a mild case, and lucky enough to be diagnosed immediately. Many of you have sustained damage from misinformed health practitioners which complicates the whole issue. I was fortunate. It came on suddenly as a result of a bad yeast infection. In fact, like many of you, I thought it simply WAS a bad yeast infection until I had run the full gamut of yeast cures with ever increasing pain. I had the wonderful fortune to stumble across a fabulous GYN who actually diagnosed me correctly after doing cultures for EVERYTHING and finding nothing. (Her name is Ellen Paige and is in Tucson Arizona if that helps anyone out there.) She handed me an article and started me on topical Estrace cream. I then went to this and other web-sites and found out much more about this horrible condition. With my GYN's help and advice I took control of my own treatment and started a course of calcium citrate, st.johns wort, and n-acetyl glucosimine as well as the estrace cream combined with just a little hydrocotrizone. She said to use the Estrace cream sparingly but put it everywhere I felt pain, including internal to the vagina if I felt pain there. I did this in the morning and before bed at night. If the pain was especially bad I mixed just a little hydrocortizone with the Estrace. While many doctors warn against using hydrocotrizone as it can thin the sensitive skin, my doctor told me that using a NON-prescription strength *very sparingly* could alleviate the swelling and would not cause thinning of the membranes. I am taking about 600-800 mg of Citracal just before lunch (ON an EMPTY STOMACH), and 600-900 mg of st.johns wort (on a FULL stomach), and 600mg of n-acetyl glucosimine (NAG) per day. The citracal supposedly helps with dispersing the oxcylates in our chemistry (and works much faster on an empty stomach. I found it can alleviate severe burning in about 15 minutes!) The st.johns wort increases the body's tolerance for pain, and has that added "side effect" of being one of nature's "happy drugs" which helps with attitude (and attitude has a LOT to do with healing). The NAG helps repair smooth muscles, membranes, and connective tissue, and VV is essentially a connective tissue disorder. This condition is definitely (in my opinion) related to hormone levels. I was improving slightly with the above treatment but becoming depressed with the slowness of it all until I began to correlate my pain to my menstrual cycle. I seemed to have much more pain just before and during my period. So I stopped taking the birth control pills I'd been on for TEN years. Two months after stopping the birth control pills (and continuing my treatment) good things started happening. The daily pain became bearable, sitting was no problem as long as i got up to walk around every once in a while at work. (And not wearing underwear helped a lot also). As time progressed and I continued the treatment there were whole stretches of the day that I had no pain at all. Things just kept getting better and better. Intercourse was not an option until a few months ago, and then it was painful...but bearable. Eventually, slowly, as long as we didn't do it very often, it became enjoyable again. It's taken this full year, but my symptoms now are barely noticeable. I've weaned myself off the NAG and i can even go without the calcium citrate and st.john's wort for several days. The Estrace I now use only once per day and if I skip a day there are no ill effects. I've had no side effects from this course of treatment. Now I notice there is about a day of annoying pain when I ovulate, and there is some discomfort just before and during my period, but it's NOTHING like it used to be. During those times I use a bit more Estrace mixed with a bit of hydrocortizone to reduce the swelling. It has not affected my period or caused other side effects as of yet. I also find that if the pain is annoying enough to keep me awake at night, about 400mg of ibuprophen takes the edge off enough so I can get to sleep. I did much experimenting with different diets and foods and found no correlation between pain and food. I know a lot of people find certain "trigger foods" that cause them problems, but with careful eliminating and reintroducing of food (and keeping notes) I haven't been able to find correlations for me. My current theory is that this condition is mainly hormone driven (again...for my body this seems to be the case, all our bodies are different), and my long use of birth control pills threw my body's natural balance off, causing long term damage. I expect to need to use the Estrace cream and vitamine/herbal supplements on at least a maintenance level for the rest of my life, and i'm afraid of what will happen if I ever decide to get pregnant (with all the hormone changes that includes), but I'm grateful that at least for now my life has settled down to a more "normal" level. I hope you all are as fortunate in the future and if anyone wants to discuss ideas/treatments etc. please feel free to email me at christen@noao.edu. Support hugs, and best wishes to all of you. Keep optimistic and hopeful (as best you can). It IS possible to live a normal life again. Don't give up!!! Jenna
CommentLily: Glad to see a fellow GAUCHO on this guestbook!!! I also saw Dr. Cox at UCSB student health center. He is one of the greatest specialty doctors around. Unfortunately, you have to be a student there to see him. There was word in 1995 that he was tempted to go into private practice. Although I know he is reaching the ideal population there at the university, a small part of me wishes he could go into private practice. I would make the trip from Orange County to see him...he is THAT GOOD!!!!! He has many great qualities most women with this disease need...but the greatest gift he can give is knowledge. That is soooo important in anything, but especially with this condition!!! The fact that he is active in research is AWESOME!!!! I truly believe now, after such an experience with him, that I need to stay connected with doctors that are affiliated with a university-based research team. Currently, I am seeing Dr. Ostergard in Long Beach, CA. He is affiliated with UC Irvine. In fact, Dr. Cox is the one that referred me to him!!! Anyway, I agree with what you said about the irritants and yeast thing. It may or may not show up on the slide or under the microscope, but it usually is a contributing factor to this disease. Almost anything can set it off. Did he ever put you on Gel Caps filled 2/3 full with Boric Acid Powder? Curious to know if he did, and if it worked for you. I would like to talk to you via email...can you email me at the above address?? That would be great. Thanks. Sheri
CommentAlthough I don't know anything about Vulvodynia, I do know that I lived with a tampon inside my body for the last ten years. Two months ago I started bleeding after my period. I asked the doctor to find out why. During the Pelvic examination he discovered a tampon lodged up behind the neck of my uterus in a fold of skin (making it nearly impossible to see). He said he could tell it had been there quite awhile. Many of the symptoms you woman are describing is what I experienced long term in varying serverity and duration. I did not develop "Toxic Shock" and die although the tampon did perforate the vaginal lining and probably would have had major complications in the next 30 days. The major symptoms were mental confusion, anxiety and panic attacks.. I also experienced extreme fatigue and lower body weakness. My whole gastrointestinal system was affected with daily nausea and I had major spasms and contractions every where in my pelvic area and could not distinquish the origin. I developed chronic constipation (not diarrehea) and never vomited. Please take this in consideration if you have not already done so and find a doctor who will do a very thorough examination. I hope I can save a life or two or at least save someone from chronic misery.
CommentDear Trace...I have forwarded my email to your alternative address.
CommentI am 23 yrs. old. I had a baby three years ago. I have been suffering from painful sex for about 4 yrs now. I have had the same partner for 6 yrs. We both have been faithful the 6 yrs we've been together. I am not sure if is suffer from VVD or any of the others listed by many of you, however for the first time in 4 yrs I am not alone! I I have been to my gyne(currently looking for new one. Any suggestions in Chicago?) Anyhow, when I first addressed this to my Dr. she said 1. It's because I just had a baby 2. I don't use enough lubrication(believe me I have had to change the sheets afterwards) 3. The best on is " It's psychological!" For a while there,I thought so myself. Now I know that it's far more than that. I also have an extremely low sex drive. It was'nt always that way(from what I can remember.) My boyfriend has been pretty supportive, but this has taken a huge turn for the worst in our relationship. I have had many recurant yeast infections, I feel the burning and "tearing" during and afterwards. When I pee after and then on for a day or two, I have to blot dry. I have spurts of itching on pubic area, inside and around the opening of my vagina. I would love to talk to anyone as I am new to this. I plan on finding and talking with a new Dr. I will definitely tell her about this. I need help. My relationship is suffering big time. I don't feel lkie a good partner and like I am weird. Anyone can feel free to e-mail me. I encourage anything. Thank you all for being there. This is a great site and I wish you all optimism! :) :) Angie Angie613@hotmail.com
CommentHad my follow up visit with doctor "vulvur specialist". Unfortnately, in fact I could tell he was also disappointed that the cortisone cream did not improve this spot (size of a pin drop). He prescribed Estrace -- and we will see. BUT -- this pain was so intense he couldn't even touch the area. He put a cream to numb the area and waited about 15 minutes and when he came back he was able to examine me. I felt nothing. The cream, which he gave me a prescription for, is EMLA. Let me tell you. I had several hours where I did'nt feel anything and it was heaven. The Lidocaine he game helped some but this stuff is incredible. It's Lidocaine + Prilocaine. Well, I'll try the Estrace, the Premarin and a different antidepressant "Desipramine' which treats depression, compulsive orders and "bed wetting??? I'm sure I fit somewhere in there. Just wanted to tell you about EMLA.
CommentFor those of you that read the entries on this site and feel "there is no hope" - just wanted to tell you it isn't so. For about six months I have been following this site as well as others, including the one for Sweden wich is where I live (I've seen some other swedish girls are posting here too). And I have to say: there are so many women getting better! Even some that have been ill for ten or fifteen years or more! I know that some of you (my heart goes out to you) have gone through virtually all of the treatments with little relief, but for the most part I think finally most women find something that helps them! Whether it is accupunture, estrace, homeopathy, long-term yeast treatment, the diet, treatment for dermatologic problems, antidepressants, CORRECTLY AND EXPERTLY PERFORMED surgery or biofeedback (wich seems to be helping so many)... finally many many women find out what is their cure. This condition is not hopeless! The key seems to be to find the right doctor, or find a support group or support site that can offer suggestions for treatments that might help. As for the site in Sweden, is has existed for about a year and during this time many of those who have been writing in has gotten much better due to suggestions from other sufferers, several have been cured. It is wonderful to follow their progress. For myself, I have had some minor problems that seems to have diminshed considerably thanks to this and other sites. I am 95% and getting better! Organization and putting pressure on politicians and institutions for funding research, as well as working for a bigger awareness of this problem and informing sufferers that there are infact treatments out there will surely help even more women in the years to come. Everyone on this site should be proud that by sharing what they know and working for change they DO make a big difference.
CommentFor those of you that read the entries on this site and feel "there is no hope" - just wanted to tell you it isn't so. For about six months I have been following this site as well as others, including the one for Sweden wich is where I live (I've seen some other swedish girls are posting here too). And I have to say: there are so many women getting better! Even some that have been ill for ten or fifteen years or more! I know that some of you (my heart goes out to you) have gone through virtually all of the treatments with little relief, but for the most part I think finally most women find something that helps them! Whether it is accupunture, estrace, homeopathy, long-term yeast treatment, the diet, treatment for dermatologic problems, antidepressants, CORRECTLY AND EXPERTLY PERFORMED surgery or biofeedback (wich seems to be helping so many)... finally many many women find out what is their cure. This condition is not hopeless! The key seems to be to find the right doctor, or find a support group or support site that can offer suggestions for treatments that might help. As for the site in Sweden, is has existed for about a year and during this time many of those who have been writing in has gotten much better due to suggestions from other sufferers, several have been cured. It is wonderful to follow their progress. For myself, I have had some minor problems that seems to have diminshed considerably thanks to this and other sites. I am 95% and getting better! Organization and putting pressure on politicians and institutions for funding research, as well as working for a bigger awareness of this problem and informing sufferers that there are infact treatments out there will surely help even more women in the years to come. Everyone on this site should be proud that by sharing what they know and working for change they DO make a big difference.
CommentI haven't written for a few months, but I have great news to share,I hope it will at least help one other person from this terrible problem. I have suffered with vestibulitis for at least 10 years, not knowing about the condition. My doctor wanted to send me to a sex therapist to deal with the problem that she thought was mental. After seeking another opinion about my endometriosis, I happened to mention that I had painful intercourse, and wondered what else I could try, and that is when I was finally diagnosed. After about 6 months of trying Diflucan and estrace, and cortizone. I finally decided to try going off the pill which I have been on for about 10 years for treatment of the endometriosis. With in 2 or 3 weeks I began having relief, that was in november and for the last few months I have had virtually pain free intercourse for the first time in many years! I am so thrilled (and so is my very patient husband!) to not be suffering anymore I am sure it is not the ultimate cure, but maybe one of you out there has a similar situation. My doctor said it seems to be different for everyone. One other thing I mentioned before when I last wrote, my doctor mentioned that I should stay away from ALWAYS brand pads (since I realize a lot of women cannot use tampons with this condition) they have a lot of chemicals in them that aren't particular good for you skin. I have actually noticed a big difference since discontinuing use of this brand. I really have to wonder if they could have actually been the cause of vestibulitis for me, It is hard to say if it was and irritant to the problem, or the cause. I stopped the pill and the use of ALWAYS at the same time, so it is hard to tell which it was. Any one else had this experience? Someone else wrote they thought I may be on to something. I really may be worth looking into, if enough of us turn out to have been using the product..I am just testing the waters on this, I know we would all love to know what is causing this. Good luck to all!! Kelli
CommentSherri, My doctor has prescribes boric acid, except it was special made as a suppository. I think to some extent, its helping. I also bought a cream at the store called Vaginex. Although I don't have iching, it has helped with my pain. Also last week I went to see a urology specialist, in hope that he could pin point exactly what was wrong with me. The word vulvodynia is a vague way of saying " yes you have vagina pain" Like we didn't know that already. He did a urine specimen, which is common in his field. I wasn't expecting him to come back and tell me that I had a big time bladder infection. I ended up with a shot in the butt, and 3 weeks of antibotics. What puzzled the doctor was I didn't feel that I had a bladder infection. I didn't have the burning when I urinated. I did however started having incontienice, and urgency. I would feel like I didn't need to go to the bathroom, then within seconds, it hits without warning and I could never make it to the bathroom. I am still in pain with the V V, and will be tested for IC in two weeks. My pain is not as bad as it was prior to antiboitics. My doctor asked what type of lubrication I used and I told him KY jel. He told me that it is the worst possible lubricant that a woman can use, and that it should be taken off the market. He told me to use just regular cooking oil. I haven't has sex in a long time and I decided to try the oil. I was surprised that I was able to let my husband penatrate, BUT, I couldn't have an orgasm. I would come so close and then the feeling stops short of an orgasm. This was frustrating and I never had problems with orgasms before, I am use to multi orgasms. Did you feel a difference using boric acid? The Vaginex does help soothe and promotes healing of the skin. My doctor said that I must be in bad pain to not know I had a bladder infection. I had several infections going on in my bladder. I must of had this infection for a long time. I would recommend that all you women make sure you get a urine speimen, when you see your doctors. When you are suffering pain from vulvodynia, you won't feel the bladder infection, it only adds to the pain. This was a reality check for me, and none of the doctors I've seen prior to him even did a urine test. My pain is less now, but uncomfortable, and constant. I still have a long way to go, before finding what will work for me. You are the second person I have heard that was given boric acid. I really do feel my best when I first wakeup in the morning, due to the boric acid I insert at bedtime. I think it does have something to do with your ph balance. I don't think it puts it back to normal, I think that it shocks the ph that is unbalanced, making your body work harder to rebuild a healthy p h balance. Who would of thought that you would put boric acid in your vagina? Its nice to know that I am not the only person that boric acid is being prescribed for this. Take care. Terry
Commentjust was wondering what happened to ALLY/Sue???? haven't seen her/them post a message in a while...geeeeeee-hope she/they are ok!!!!
CommentIn respone to Kellie's post on 4/28 - did your doctor reccommend a different type of pad to use? I can use tampons most of the time but I also have been using ALWAYS pads. Have you tried another brand that hasn't caused irritation?
CommentMy daughter, too, was a patient of the wonderful Dr. Thomas Cox in Santa Barbara. Under his care she ended a three and half year nightmare, becoming painfree for the past three years. She used the 2 week regime of boric acid suppositories, but got no relief from them I still think they're worth trying if yeast is an issue for you. I've read reports of women for whom they've been the answer and Dr. Sobel published a study in 1997 suggesting that they may be more effective against the t glabrata strain than topical or oral azoles. My daughter improved on diflucan and biofeedback. I want to mention that she'd tried biofeedback for a year or more without result, so we had it on our done that list, but it turned out she hadn't ever done it properly. When she changed physical therapists the improvement was dramatic. She also responded to massage and ultrasound. Unfortunately she relapsed this Christmas after treatment for a persistant UTI and is no longer getting the relief we'd come to count on from diflucan. So we are back at the beginning again.
CommentHello, I have posted to this site a few times and read it almost every day. I have been living with Vestibulitus for about 2 years now and have been on many different treatments with no luck. When I was first diagnosed with it I was put on 25mg of Elavil and Steroid cream. I became painfree for a couple of months but after trying to work out the pain has returned and has not gone away since. I am starting to lose hope and am becoming very depressed. I have also thought about suicide during those really rought nights. Last night was a bad night. Couldn't walk and the pain was extremely horrific. My fiance has been absolutely wonderful during all of this. He tells me that it is "Our" problem and that he would never leave me. He is a godsend to me. Without him I know this would be a lot more difficult to accept. Still, I feel like a horrible lover and I feel terrible that he has to suffer through this as well. My wedding isn't until next year in June and I pray to God every day that I will be able to get control over this by then. After reading through the guestbooks, I am starting to think that it may be worth quitting my birth control pills. I have noticed many women feeling better after going off of them. Can any of you that have had this experience tell me what brand of the pill you were on? I am currently on Estrostep Fe. I started taking this around 2 years ago because I am iron anemic and was losing large amounts of iron through my periods each month. Since then my anemia has gotten better but now that I look back, it seems as though this may have started around the same time I started on the pill. I am also interested in trying acupuncture or some type of massage therepy that was mentioned earlier on. I currently live in Michigan and have no idea where to find reputable acupuncturists or other specialists. Does anyone know of any good specialists here? To Karen (above), I noticed you mentioned Dr. Sobel. Is this the same Dr. Sobel who works out of a clinic in Detroit MI? I am currently seeing him and have heard nothing about him. He currently has taken me off of everything except the Elavil for 6 weeks. I am still in pain. I go back to see him in a few weeks and plan on mentioning going off of the pill. I'll let you know if there is any improvement. If anyone needs to talk or just wants some support, feel free to email me at the address above. It helps me immensely to talk with others who know what I am going through. I am praying for you all and hope one day that we will all be cured. Hang in there.
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND I STRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. I AM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND I STRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. I AM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND I STRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. I AM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentHave anti depressants worked for anyone? I have heard that they can make you put on a lot of weight and after that it's almost impossible to lose it. But I've also heard that when they're prescribed for pain relief they're in a much lower dosage and with fewer side effects. Is this correct?
CommentI haven't written in the guestbook in a while, but I do read the new entries on a daily basis. Someone asked about the side effects of the tri-cyclic antidepressants. I am currently taking Elavil and have been for about a year and a half. My pain is pretty much under control now, so I am slowly having the dosage lowered and I hope to be able to stop taking it in the next few months. Supposedly, it can repair damage if taken for an extended period of time, and so it may not need to be taken forever. I am a thin person, but when I first started taking the Elavil, I gained 10 pounds in three months. That concerned me a little. I didn't mind the ten pounds, but I was afraid that I would continue to gain it at that rate. However, in my case, I stopped gaining weight at the 10 lbs. so it did not become a problem. I don't know if that info. will help anyone, but at least there is a chance that weight gain will not be a permanent problem for everyone on the medication. I have not been taking the pill, because for about two years my husband and I couldn't have sex anyway. But for the past year or so, my pain is much better. Now I wish that we didn't have to use condoms because they seem to irritate me. I have heard so many conflicting things about the pill and vulvodynia that I am scared to start taking it again. Does anyone have any info. for me about whether or not it had a bad effect on them? Most women seem to say that it made them worse. Is there anyone out there who didn't become worse? Also, how about the depo- provera shots? My doctor suggested that they might be a good alternative to the pill. Has anyone become worse after the shot? Someone also asked about massage therapy. My husband is currently attending the second best school of massage therapy in the U.S. He is looking into how massage may help vulvodynia. As soon as he finds out anything, I will post the info. here. I wish everyone the best and hope that someone can find a cure for this horrible disorder v-e-r-y soon.
CommentFor those of you looking for an alternative pad to ALWAYS. I switched to a bladder control pad called POISE, it seems to hold the moisture away better for me than the regular sanitary napkins. I have also tried GLADRAGS which is a cotton flannel pad. It is very comfortable, however you have to wash them yourself, which I find disgusting and also I have had some accidents (bleed through) kinds of experiences with them. Thank you to all of you who mentioned weight gain from Elavil. I have been on Paxil and not noticed a weight gain. However, I have just started on Elavil too for pain management and the doctor never mentioned weight gain. I have put on about 6 pounds inexplicably and thought I was going crazy. I am a former anorexic/bulimic and putting on weight is terrible for me. I really appreciate the mention. I will have to work on another alternative. Also, I think that I have found that Diet Coke flares my condition. I don't drink it often, but I have noticed this in the last few weeks. Anyone else notice that? Thanks again.
CommentI have suffered with vaginal pain for most of my life. I have tried many things including a change of diet. I now live in Denver, Co. and am looking for a gyn who can administer the Glazer Protocol. Please advise. Patricia Stewart
CommentLois: I just read your entry in the guestbook and wass wondering how to administer EMLA. I talked my doctor into giving it to me, but he had never heard of it. DO you just rub it inside the vagina or what? And then do you remove it soon. I need an answer by tomorrow if you can possible e mail me or write it into the guestbook. I am desperate with the pain.
CommentDolores, In case you're checking here. I'm emailing you right now.
CommentHello everyone, I haven't contributed to this guestbook for a couple of years now, but I thought I would drop a line in now. I have had vulvodynia for 4 years now. It started when I was 18 and 2 weeks after I went on the birth control pill. Two weeks after the pill I started itching, burning, etc. I eventually went off the pill, but did not improve. The pain started in and eventually it became 24/7 pain. I have tried almost everything out there from anti-fungals, anti-dep, anti-inflammatories, etc..including the surgery. The surgery was the worse mistake of my life. I am so much worse now. My doctor said I would be 75% better at least...Wrong!! I am 75% worse now. I have these scars inside me that burn and ache all the time on top of my vulvodynia pain that never went away. They are like little pits inside me. I am so scared and depressed now. I am only 22 and am engaged to be married next year. I like Heather that posted earlier pray everyday that I will be better by my wedding. I don't know what to do anymore. I have seen about 25 doctors. Most of them have no idea how to even say vulvodynia. Does anyone know of any doctors in Kansas City or around here that might be able to help me? Or any doctor that could do reconstructive surgery...I would be willing to travel if a dr could get these scars better. I am a mess. The doctor that operated on me sewed my uretha to my vaginal wall. Well I guess it could have grown back there..can't prove she did it. She shouldn't have been cutting up there anyway...Well I am sorry for rambling. If anyone has any ideas please feel free to email me. I would really appreciate it.
CommentI need HELP. I have suffered with vulvadynia for 3 years and have taken elivil, neurontin, effexor, not to menetion a few others. I am sticking with the Low Oxalate Diet, but I still have pain almost every day. My problem is not with painful intercourse. I do not have a discharge or infection. My pain in the form of burning is in the labia. Sometimes it moves to the rectal area or just around the vaginal opening. I need someone who has these symptoms to please give me some advice. I have read many stories and my heart goes out to every one of you ladies. Mine seems to be a mild case compared to others, but believe me, I am in pain all the time. I love to walk for exercise, but it seems to make the buring worse. I can feel perfectly alright one moment and then the burning will start. IS THIS NORMAL FOR VULVADYNIA?? I have had my urine tested for oxalates and have tried the calcium thing, but it never really helped. I do stay on the Low Ox Diet, but whether I eat the right things or not, it seems I still have this burning sensation. If anyone out there can relate to these symptoms, please write back on the Guestbook. I am hesitant to give out my E-mail address right now, but I am desperate for some advice. Thank you in advance for your help.
CommentTo "viewer," Unless you are in third grade, there is really no excuse for such an immature and disparaging message. Just to recap and, I hope, finish this whole ugly name calling thing, we had a woman who gave some advice, a woman who disagreed with that advice, and the whole thing spinning out of control. I was watching Ally MacBeal and reading this page and I thought the whole thing was funny so I made up the name Ally and hoped my two cents would make everyone relax and see how silly it was to be fighting over B vitamins. I have no idea who Sue is, no idea who Gayle is, and no idea why you as a third party find it necessary to revisit this topic. Will you please let it die or will you be tempted to have yet another last word?
CommentI have been suffering with VVS for about 2 years now - since my husband and I got married. We have never been able to have sex yet we were longing to have children. Considering the fact that I could be wrestling with this medical concern for a while (like years), we tried our own "science experiment" and injected semen into my vagina on the day I was ovulating. I never, in a million years, though it would work but on our second wedding anniversary I took a pregnancy test and discovered I was pregnant. Although we have yet to have intercourse we have a very intimate and satisfying sex life. We will continue to look for answers, ask questions and search for results but we thought we'd like to get our life on the road while we were at it I'm not getting any younger. Has anyone with VVS delivered vaginally? Did it make your condition worse?
CommentHi! I have lichen schlerosis. I have read several of the guest pages and empathize with all of you. No one,,,,I repeat no one derserves this kind of pain and torment. My "pain" seems to come and go in cycles. The older I get the more severe the pain,,,sorry to say. I am also bi/polar, I take lithium everday and I refuse to take anti-depressants any- more. It is not worth the side effects. I did try testosterone cream....burnt like hell....My herbologist hase me on two different viral elixers, and it seems to work....If I don't wait too long to start taking it, after a breakout it works better. The elixers are put under the tongue, and that goes straight into the system. For more info,,,,please contact me I have been ashamed to say anything about this affliction before now....Try to keep the faith, and keep your mind occupied. My worst fear during a breakout in knowing that I will have to go to the bathroom. I have overcome a lot of adversity in my life...I take my meds,,get good sleep, and try to eat right and drink lots of water, (that dilutes the urine, and doesn't burn as much... God Bless our significant others.... There is some reason for this pain, I just hope that we can all overcome this terrible this trauma, and have inner PEACE. Thanks for this place to vent...
CommentI have a friend that was recently diagnosed with Vulvadynia. As a child, she was a competitive gymnist until she grew and could not retain the small frame that gymnists must have. Since it might have to do with muscle structure and function, do you know if there is a high incidence of Vulvodynia with gymnists or other athletes on stringent excercise regimens?
CommentHave found your page interesting and made a copy to show my doctor. It just blows me away how few doctors do not even recognize the WORD..VUL.!!! Must say on your survey YOU DO NOT APPROACH AT ALL THE age of us past menopause. You ask many questions of those still having their M. cycles. nothing of those past menopause. THIS IS SO TRUE OF MOST DR. they have no knowledge of women in that age bracket. AND I MUST SAY SEX IS STILL WONDERFULL THEN TOO.I could find no help locally after visiting 5 dr. here in Ohio, so I lived in our Motor Home in Colorado for 5 months so that I might visit a dr. in Denver. I found low ox. diet helped me the most. JEEZ why don't dr. find out about this painfull problem!!!! thank-you for the wonderfull web page, for a time I wondered if I were the only one with this problem. The first 2 dr. I went to told me I had vag. herpes, all test showed this not to be true!!!!! if I had not had such a wonderfull marraige this could have caused a divorce. WHEW>>>>WHAT DUMB DR. CAN PUT YOU THRU>>IT IS SHAMEFULL TO THE PROFESSION!!! thanks again marty
CommentTo Sam: I haven't heard this theory before, but my daughter, too, is a vvs sufferer who used to be a competitive gymnast.
CommentLadies...I suffered from what my MD said was VDyn for 2 1/2 years. Given the history of the onset of my condition, and after long research, I refused to believe that I had a condition that has an unknown cause and unknown cure. I also refused to accept my MD saying..."I just don't find anything wrong...you have VDyn...sorry about your luck." Even though I am a medical professional, I sought out an "alternative medicine" option. After describing my symptoms and the history of their onset to a reputable naturopath, he nodded and smiled and said, "You have the symptoms of a systemic yeast infection." I had mentioned systemic yeast to my MD at the beginning of all of this and she told me that I would be alot sicker if I had systemic candidiasis, so we did not pursue it at that time even though I have white patches of skin on my face that have been diagnosed as a yeast infection. My naturopath took a blood sample and sent it to a naturopathic lab to do a test that "has not been cleared by the US FDA." The test was created by a naturopathic lab and identifies "Candida Immune Complexes." I don't clearly understand it, but the lab report does say that elevated results, along with clinical symptoms, indicates a candida (yeast) overload. My naturopath tells me that a candida overload will result in burning of mucosal tissues of the vagina. My VDyn started right after I had a severe (and my first ever) vaginal yeast infection, and I have had recurrent yeast infections ever since, as well as an increase in the white patches on my face. Dr. J started me on a 21 day treatment of Nystatin, and some other naturopathic treatments. I have just started the treatment, this is day 2...but I would urge all of you to find a reputable naturopath and question his/her knowledge about VDyn and systemic candidias and treatments. If nothing else, the naturopath has given me HOPE and encouragement that there is more to this than "I don't find anything, there is no cure, sorry about your luck." I live in the Corvallis, Oregon area and will glady refer you to my naturopath if you are close by. Good luck, ladies...there is HOPE. Judy
CommentAnyone ever use Ultram for the pain associated with vulvadynia? Can you take Ultram and Antidepressants also? Just starting this regimen. Please respond if you take Ultram.
CommentMary, I too suffer from the on and off again type symptoms that you describe above. I can feel good one minute and the next minute be in so much pain that I can't walk. Just the other day I was feeling really good and decided to go see a movie. 20 minutes into the movie I was in excruciating pain. I'm not sure if this had any effect but right before the movie I took an Excedrin for a headache I had. Later on I was reading the ingredients and found that there was caffine in them. I used to drink pop all of the time, but now I stay away from it. I am also currently on birth control pills. I am wondering if this has any effect on me as well. I go to see my doctor in a few weeks and plan on asking him although I am starting to lose faith in doctors. It really is starting to seem that they have no idea what to do for us.
CommentI have just started on 10mg of Amitriptyline per day. Can you still take other medicines with it? I mean things like pain-killers (Act 3 or Panadol) or evening primrose oil? I'm not sure.
CommentHI there fellow sufferers!! Can someone please tell exactly what "the Diet" is?? I have had this for 5+ years and just been diagnosed this December, just got married, etc, you know, such a sob story. My mother in law told me she just met a person with this and the diet plus diflucan once a week has worked for her. I really want this to go away, just like the rest of you. My doctor wants me to have cortisone injections, which I really don't want, so PLEASE someone tell me EXACTLY what this DIET is. And I do pray everynight for God to cure me, and now that I know all of you are out there, I will also pray for you! Who ever knows of this diet email me at the above address THANK YOU SO MUCH!! I do NOT want a shot in my vagina!! ~Tammi
CommentTammi, check out www.branwen.com/rowan. You'll find info about the low-oxalate diet on that site. Sue
CommentThanks SUE. I checked out that web page, and I am going to try this diet, and also have another chat with my OBGYN about weekly diflucan. Again, thanks for your quick response! ~Tammi
CommentTammi, good luck with the diet. Hope you find relief quickly. Sue
CommentHello! I am new here to this website, but not new to Vulvadynia. I have been suffering for over 13 years, but have had it my whole life. I have suffered every pain from itching (liek right now) to severe burning, to barely able to sit. My husband and I went our first two years of marriage with NO sexual relations. I had a vulvectomy in 1996, and have been better, but nothing like I was 6 years ago. I am fortunate that I have been able to have a beautiful girl (now 2 1/2) and another due in 5 weeks. Sex is a thing of the past now - we only did it once a month to try to conceive. My biggest problem is that I am pregnant and unable to take most medications. The only thing I can use is Estrace, which seems to do nothing for the constant itching and burning. Drives me nuts!! The Low Oxalate diet is wonderful - you all should try it - but it's really hard for me with all these pregnancy cravings. I just wanted to meet some other women who understood what I am going through. No one else does. Please check out the Vulvar Pain Foundation. I have gotten a great amount of information from them. Juls
CommentJust let me tell you how cool, or should I say comforting it is to know that there are others out there like me. I can't tell you for how long I have been ashamed and felt "dirty" for doctors always telling me I have nothing wrong with me, but I was feeling this way. Not to mention they said I was "nuts". But now it is a thing of the past since I know what is my ailment. So, if anyone knows of anything besides the diet and creams, let me and everyone else know! Thanks to everyone for being here, I think it helps us all to know that there is someone else who actually knows how we feel, I will check here daily if you just need to vent. ~Tammi
CommentI was diagnosed with vulvodynia in 1997 at age 22. Although it took about a year (and almost robbed me of my sanity) to be diagnosed. I also, saw many doctors and specialists who could only tell me "maybe you need some help..., psychologically". I couldn't believe how degraded I felt. I knew that the burning, itching, and swelling was not in my mind ( I couldn't even think about having intercourse). However, I started to think, maybe I am crazy (afterall, I couldn't see any symptoms). I demanded and took every STD test in the book (countless times), continually jumped from doctor to doctor, and met with tons of doctors who couldn't find anything wrong with me. Oh, and of course they threw me on Prozac because they thought I was depressed (well, I was but because no one could help me). Finally, I recieved the diagnosis of vulvodynia. At least now I knew I didn't have an STD, mental health disorder, or anything to be ashamed about. I just couldn't believe that no one could help me or the ignorance of the medical community. I don't know what definitely caused my symptoms to occur, but as a teenager I also had recurring "yeast infections" and irritations but they never lasted for years. The only thing that I can contribute to causing my vulvodynia was the Lower GI test that I had performed on me a month before this all started. At 25, I still struggle with vulvodynia daily (as does my fiance). I am lucky that he was/is supportive of me. After the many unsuccessful treatments, crying spells, and diets, I have found that my symptoms get terrible if I eat anything mixed with soy, or soy bi-product (especially before my period). I have been soy free for about half a year and my symptoms have become almost non-exsistant. I am not a doctor but hey try it, it may work for you. Also, have you noticed that soy is used in almost everything nowadays? Isn't that funny, considering that vulvodynia is a relatively new disorder.
CommentHi, just joined the list. I"m 38, two kids(High risk pregancies, preterm labour, early deliveries) I've only had the pain for a few months, and already I've felt like I've tried so many things with very little results. I have cried tears for us all, and especially those of you whose pain is worse than mine. My history: Many vaginal and yeast infections, Cervical LEEP in March 1999, bleeding complications from that, pelvic pain constantly since then, and vulvar pain beginning with the new year 2000. I had already tried the antidepressants for chronic pain last summer, even before my VV started for the pelvic pain with terrible results. I did the opposite of the expected side effects. I quit sleeping and lost a great deal of weight. I'm guessing its a yeast sensitivity, but diet and a 3 dose dulfican for 3 months try didn't work. I'm going herbal, and have an appt soon with an acupuncturist. My VV doesn't seem to be muscular. The skin, looking normal just burns and stings ALL the time. Careful with the xylocaine, I peeled skin just like a bad sunburn trying that. I have a tube of Emla, works, but only for a couple hours, so I choose now when to be relatively norrnal for a short time.Just today I have a bottle of boric acid suppositories from my gyn to try. I have only heard once a day, my script says 2 times a day for 2 weeks. Does anyone know what a normal ph of a vagina is and how one can check it? I also had my gyn try a candida blood test, not for antibodies, but for titers. Anyone heard of that? My best to you all out ther, and hope more of us can say we are pain-free soon. C
CommentHi, I have been suffering with VV since 1994 when I had a partial hysterctomy. I had acid put on the vulva 3 times, had three laser surg. with Dr. Baggish, and after my set of three surg. with Baggish I was unable to even think about making love for years! The condition was so much worse with each surgery. Why I ever went threw with the third I will never know. I wanted to die many times over. I lived on pain killers for a year after Baggish. We all know that there are diffrent causes for this condition and perhaps for some one else his Surgery may have worked. After years of being tourtured I joined The Vulvar Pain foundation and started an non evasive methods ONLY. I will not let a doctor use me as a guinea pig again! I did manage to get to a point of almost being pain free after 3 years of a low oxalate diet, calcium citrate, Nag. and taking low dosages of Elavil. I felt I was almost normal and cured. So why am I back looking for help? You are never cured with this condition and when you start feeling better keep doing what works! I feel I relapsed because slowly I introduced foods back into my diet that I would never have thought of eating before and a bottle of citrate and NAG sit almost full after three months. I also wonder if this also has something to do with yeast! I am taking Diflucan 1 tablet every three day's. I was wondering what doseges others have taken and for how long. I think this may also do in some part to yeast because I have recently started making love to a wonderful man and while using condems I had minimal problems and now with out condems I am having big flare ups. I have tried the Estrace and find that I get urilogical problems with usage. I wonder if anyone else has found this to be true in the begining. I am so frustrated, but I was better for a while and hope to be again. Everyone who has given up hope - PLEASE keep trying! I know so many times I just wanted give up. Ironically the man I am Dating is a Uroligist for children and he did not even know of this condition until he met me. This shows how few doctors are getting the message about us and our condition! If anyone has any info. about the Diflucan dosage that helped them it would be deeply appreciated! Marie
CommentI wonder how many women who suffer from this have had problems like bulimia/anorexea, rosacea (or other immune problems), low self-esteem, etc. I believe these contributed to this for me. I have successfully ended my struggle with bulimia (many years ago), but (among other normal stressors) have been struggling to help my special needs child with difficult and challenging behaviors. I feel like my inability to really handle the stresses (even though I appear to to others) causes me to internalize my stress which triggers this. I am not saying this is a psychological condition, because believe me, the pain and discomfort is very real. I am saying that there is definitely a mind/body connection and all the drugs in the world will not be effective if I can not allow myself to find some kind of peace. Is there anyone else out there who thinks this is a contributing factor? I am really intense, worry constantly, but on the outside people think I am really funny and laid back. I find that during periods of great stress, I am in more pain.
CommentI have read so many theories on this site: sugar (apparently a "modern invention" even though you can get sugar just from firing carbon atoms at ice blocks), soy, sports, God, etc., and while I completely understand the need to attribute this disease to something other than believing the world could be so drastically unfair (remember religion is the original opiate of the masses), please remember that correlation does not imply causation. Otherwise you'll drive yourself crazy trying to figure out why.
CommentHi there again! To SUE or anyone who knows: What is the outcome of cortisone injections???
CommentTammi: I don't really know anything about the cortisone injections because I've never had them and don't know anyone who has had them. It just sounds very painful to me. Sorry I can't be of more help. Sue
CommentHi everybody. I haven't written in this guestbook since september of 99, and at that time I was at a point where I never thought I would get better. I had been suffering from this horrible condition for 2 years and I was so frustrated, in so much pain, and was so upset I didn't know what to do next. I decided in november to take a chance, go to NYC and see Dr. Glazer and Dr. Rodke. I got an appointment for the beginning of January and I sort of felt like this was my last hope. I wish that I had thought to see them sooner. I have seen them 3 times so far this year, and in those 3 times my condition has improved at least 85% and it keeps getting better everyday. I have also NEVER met a team of such wonderful medical professionals. They actually spend time with you and answer your questions. They don't rush you and they give you information without you even having to ask them for it! They are absolutely wonderful and I would recommend anyone who hasn't seen them yet to give them a chance. They devote every Thursday to helping Vulvodynia sufferers. The actual appointment does cost a significant amount of money, but I believe it is worth it. The amount of care that you get from everyone in this office makes it worth while. I truly believe that they can help everyone suffering from this condition and even if they can't make everyone 100% better, I know that they can help. If anyone has any questions, please feel free to email me...I would love to help! Thank you Dr. Glazer and everyone at Dr. Rodke's office...I finally feel good again!
CommentI am wondering how often and for how long women have had to take a course of diflucan and after how long did you get some form of relief. I live in Canada and I cannot get my family doctor or my gyn to prescribe estrace cream or anything else that will help with the burning that I am experiencing. I seem to be one of the "lucky" ones who only has burning and stinging on the exterior, but none the less, it is still very frustrating and I wish someone would come up with a miracle cure. Any information on diflucan treatment would be most appreciated as well as treatment with boric acid (can you do both treatments at once?)
CommentThis message is in response to Tammi, who was asking about cortisone injections. I tried the cortisone injections last year. They did not help me at all. But, I would not speak for everyone, because the doctor I went to had one patient who did get releif. I had it done as a same day surgery procedure with a spinal block. There was some pain and swelling afterward but I guess it was worth a try. It hurt a lot less than the vulvar biposy I had. To me it was just one more thing to try to get rid of my pain, I had nothing to lose.
CommentI just wanted to express my thanks to all who have contributed to this site. I have recently been diagnosed with both vulvodynia and VVS and am in constant burning pain. My heart goes out to all of you that are suffering. Like many of you I have been undiagnosed for years. I recently saw Dr Stanley Marinoff in D.C. and he suggested that I have probably had this disorder since the first time I had intercourse-20 years ago!! I am currently taking elavil-25mg./day and have yet to feel any relief. I am scheduled to see Dr. Glazer in a week and hope and pray that he can offer me some relief from this misery. I am curious to know if any of you have a history of allergies and asthma as I do. Also, can anybody suggest the name of a physical therapist who practices biofeedback and the Glazer protocal in the Pittsburgh area? I look forward to hearing from any of you; your comments and support mean more than you will ever know.
CommentHello everyone. First I'd like to thank everyone for sharing their experiences with VVD. Until finding this site, I honestly had no idea that I wasn't completely alone on this. I have only been experiencing symptoms for about 9 months, but they have been intensely physically and emotionally devastating. I don't really know who I can talk to about this, as people either tell me "it's in your head" or frankly, they don't want to hear about my "vaginal issues!" I am 21 and have been dating the same guy for 2 years. We have not been able to have intercourse because of the pain. He has been very understanding, but in reality, a 21 year old guy in his sexual peak can be understanding, but still craving sexual activity as well. I have feelings of sexual inadequacy because I can't offer him the enjoyment of actual intercourse even though I am emotionally ready to take the step with him. Hmm..I'm babbling. I suppose I just need to vent some emotional heartache with people who might understand and sympathize with me! Because I am relatively new to this, I am easily discouraged. I have seen over 15 gynos or Nurse Practitioners and have been misdiagnosed and put on tons of medications that have not helped. I have recently seen an infection specialist and been put on Pamelor, 25 mg (anti-depressant method). I haven't seen any fellow pamelor users and was wondering if anyone out there has tried it and if so, what have the results/side effects been? Do the anti-depressants take a while to actually start working? I am eager to saturate myself with knowledge on every aspect of VVD so I can be better informed to speak to my doctor! Regarding a question I have in terms of symtpoms that I would REALLY like some feedback on: Currently i have constant burning, itching, and sometimes I feel a sharp, piercing twinge of pain in the vaginal area (seems to be triggerred more when I am partaking in physical activity like running, dancing, anything that causes sweating-as a dancer this has stopped me from the ability to dance completely-again, rather upsetting!) I also have a symtpom that is hard to explain but I shall do my best--it leads to more discomfort than pain and it feels like my labia, when i walk or dance, do not adhere to each other in a "closed" fashion, and I feel like there is constant air or rubbing of the labia back and forth which is very unsettling. It has discouraged me from a lot of physical activity that isn't essential. Does anyone know what I'm talking about on this one? It feels as though moisture or SOMETHING is stopping the labium from sticking together and blocking out air into the vaginal area. Maybe this is unrelated to VVD, but if ANYONE recognizes this symptom, it has been the most perplexing and emotionally disturbing since I don't know how to explain it to a doctor! I appreciate you all taking a look at my comments. Sorry for the verbosity! I would be very grateful for any feedback on the guestbook or to my personal e mail listed! Thank you all and take care!!
CommentI was diagnosed with Vestibulitis in September 1997. I had surgery for the condition in September 1998. It has not improved, and most days symptoms are worse than ever. There is constant burning, itching, and discharge. Like most, I have been to several doctors, including a specialist in the field of Vestibulitis. His suggestion, "more surgery". No way. The first surgery took four months to recover from, and cost me my career. Never again will I have surgery for this condition. I try new treatments, relying mostly on cortisone creams and estrogen creams. They seem to bring the best relief. Thank God that I have a wonderful understanding husband that does not rely on intercourse for our times of intimacy. However, it would be wonderful to be that sexually active again. If anyone knows of a treatment, or has a real success story, please e-mail right away. I would love to find another specialist in the Dallas area that really is enlightened on the newest treatment and has a sympathetic ear.
CommentThis may seem like a rediculous question, but has anyone suggested or tried Preparation H? It reduces pain, itching, and burning in an area of very tender tissue. I am personally afraid to try it first, but wonder if anyone else has?
CommentJust wondering if anyone else caught the 11 p.m. (EST) NBC news - they had a segment on "vaginismus" which they described as a muscle spasm making penetration painful/ impossible. I was surprised I never saw that word on this page. They interviewed 2 women who had the problem and were seeing 2 doctors on Long Island (I think) who treat the problem both as psychological and physical. I thought they alluded a little too much to women who have a history of abuse or are otherwise uptight about sex, but at least the problem is getting some nationwide recognition.
Commentjust wanted to clarify...vaginismus is actually a different condition to vulvodynia, although maybe the conditions do have some shared features. vaginismus occurs when the muscles in the vagina spasm, making any sort of penetration impossible, and yes, frequently occurs in people who have been sexually abused. vaginismus is considered a psychological disorder. it is pain, rather than muscle spasms, that leads to people with vulvodynia not being able to have intercourse, although of course sometimes pain can also lead to tight muscles, due to anxiety. increasing people are becoming aware apparant that vulvodynia is a disorder with a physical cause. treatment for vaginismus often involves systematic muscle relaxation, which can also help with vulvodynia. certainly, we hurt more when our muscles are tight, and some behavioural techniques like biofeedback can teach us how to relax our muscles at crucial times. undoubtedly some people with vulvodynia also have vaginismus, but they are not the same thing.
CommentI was wondering if anyone out there seemed to have pain worse after lifting and holding a child. I was feeling pretty good for about a week and just this week I babysat for my 1 year old granddaughter, well after only 2 hours running after her and lifting I had a relapse like no other time. I have posted in the guestbook a couple of times before and I always got alot of info from you fellow vulvodynia sufferers. I also wanted to say I have been taking low dose Elavil for about 10 months, I think it has helping, but I also have put on about 20 pounds. I am not sure if the weight gain is from the Elavil or is from the hormones I take. I take Prempro. I go to my gyn. next week and I am going to ask him about the weight gain. I can live with the extra pounds for now as long as the pain is under control. Good Luck to you All.
CommentMy current gynecologist, who was treating me for vulvodynia, was killed in a tragic car accident. I'm looking for another physician who specializes in treating this disorder. I live in the Philadelphia, Pennsylvania area. If you know of someone, please e-mail me at the attached e-mail address.
CommentWould someone be kind enough to advise me per my email how I can access the current Guestbook. The latest I can access is 11 but it does not show recent postings. Many thanks
CommentHello, this is my first time leaving a message here, and I am looking for as much knowledge and advice as possible!!! I am 25 years old, and have had Vulvar Vestiblulits for 3 years now, but have just been diagnosed and began treatments recently. I have been through it all, like many of you. It began after a Kidney infection when I was given antibiotics. The burning/pain continued, so Dr.s thought I was having re-occurent bladder infections, and IC (Intersticial cystitis). Guess what, more antibiotics. Then came the yeast infections, at one point I was colonized with yeast. The yeast was cleared, but the burning/itching/pain continued. The cultures were negative, but I was still treated for Yeast. All the while I know SOMETHING IS NOT RIGHT HERE!!! Eventually I didn't know what was going on???????? I was tested for every disease and infection known to man, and the cultures and pap smears all came back negative. I was biopsied, given steriod creams, yeast creams, hydrocortisone creams... The list goes on and on. Once my GYN figured out what she was doing just wasn't working, she referred me to a vulva specialist. The specialist then diagnosed me with CYTOLIC VAGINOSIS/Vulvar Vestibulitis. I am wondering who else has had this diagnosis?? He says there is no yeast, or other disease, but too much of my good bacteria. The PH is off in my vagina, and it is causing cell breakdown. He tried baking soda douches and polycitra to alkalinize my PH, but that wasn't too effective. Now he has me taking 1 gram of SULTRA 3 X a week for one month to normalize my flora. Has anyone out there tried this treatment as well??? I rarely can have comfortble sex with my husband and feel like that that part of me is slowly dying, which makes me very sad!!! I am determined to kick this thing. I am tired of raking out money and trying expensive treatments that don't work. I am hoping to talk with women who have been in similar circumstances, and what treatments they have tried, and which have worked or not worked!!!!
CommentHello all, I am hoping for some information and knowledge from you out there!!! I have had VV for 3 years now I am currently 25 years old. Just recently I have been properly diagnosed and started to be treated!!! I have CYTOLIC VAGINOSIS. Had anyone else out there had this diagnosis? My Dr. says I have too much good bacteria, and that my vaginal PH is off. I feel swollen/burning and rarely have comfortable sex. We have tried baking soda douches, but that hasn't helped. Now I am taking 1 gram SULTRA (a triple antibiotic) 3X a week for 1 mo. to try and get my flora normal. Has anyone out there tried this treatment too??? I have been through it all and never diagnosed properly until lately!! I would like to have as much knowledge as possible of possible treatments out there. Please lend a helping hand!!! Thank You, CG
CommentTo Rebecca: Hi there! Thanks for your response about the cortisone injections. My doctor wants to do it this May 26, but I see you wrote you had a spinal block?!?! Does that mean totally numb and you can't drive home afterwards? I live in Florida and my doctor is 1 hour from where I live and I will be by myself that day, is this ok? I am not too sure I want to do this, but I am willing to try, what If I don't do it and it would have helped?? You see, all of us are so scared not to try something and then scared to try it at the same time! Well, let me tell ya, I have been reading the older guestbooks (and if you haven't, you should read them) and there are some things there that may help. For example, I have switched to Tide Free to wash my underwear, PJs and anything else that touches my vagina, including towels. Then I dry them with no dryer sheets. Another thing that doctors told me to try was Dove soap when I take a shower, but that did not work, so I switched to Ivory. Now, I use nothing but hot water and my hand to wash myself, making sure to get in all the creases!! Let me tell ya, I have been experiencing somewhat euphoria with this new "cleansing method" You may think it is gross, but I do not feel dirty, I feel clean! Now this is something you all can try with no drawbacks , surgeries, etc. Just buy some Tide Free! I also drink lots of water all day long, and make sure to blot very dry when I go to the bathroom. Another suggestion is when you go #2, wipe (from front to back, like we ALL KNOW) but also use a Kleenex wet wipe, which you can find on the toilet paper ailse. This makes sure you are super clean! i have been doing this for about a week and a half now, and I feel better! I am hoping this will also help someone else out there too!! I have tried other things people write, and thought I maybe could help someone else too!! There is one drawback, though, Now that I am feeling about 85% better, I am afraid to have sex with my husband due to the fear of going back to where I was 2-3 weeks ago! Oh well, maybe next week! He has waited this long, why not longer?? hehehehe AND REBECCA-- Let me know about the injection!! Exactly what happens?!?! Thanks! PS- try praying too, I have been doing alot of that! ~Tammi
CommentHi, I am being treated for VVD with a tricyclic anti depressant. I have been experiencing tiredness (as my doc told me I would), but I am also very constipated. Is this normal and if so, any suggestions on how to regulate myself again? I have been reading about women gaining a lot of weight on the anti depressant method-is this because of water retention/constipation or increased appetite? What causes the weight gain, exactly? Maybe someone has asked their gyno?! THANKS!
CommentThis is just to apologise to anyone who might have sent mail to my xoom account. There seems to be something wrong with it as nothing is coming through. So if you think I haven't replied that's why and in the future please send any email to trianek@hotmail.com. To the person who posted a while ago - I've just started taking 10mg of amitriptyline and so far have had no side effects except dry lips and a strange taste in my mouth. But even that has decreased now. I'm hoping that I won't put on any weight and because of that I'm working extra hard at the gym and staying away from fatteni |
