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CommentVulvodynia guestbook 17 is now open. Please excuse the period of time during which the guestbook was unavailable for postings. I would like to make some suggestions to avoid such problems in the future. The vulvodynia guestbook was set up with the storage parameters of a guestbook which are fairly limited. The guestbook was for initial visitors to post entries regarding their condition and their experience in visiting the site. Ocassional posts from those returning were expected. However, the guestbook was not set up as a bulletin board for continuous interchange between visitors. For this type of interchange I set up the vulvodynia email lists which have archives to allow all previous posts to be viewed without taking up storage in my local server. On the email lists the storage is performed by the service provider, in this case yahoogroups.com. In order to avoid future episodes of overfilling the guestbook I would ask you all to engage in ongoing communications by using the vulvodynia email lists or the vulvodynia chat room. To join the vulvodynia email lists/chatroom just scroll to the top of this page and click on the left-side highlighted words "Mailing List" and follow the instructions. There are several hundred members of the email broadcast lists. The email lists also permit you to communicate privately with each other by exchanging email addresses. Once you have signed up on yahoo for the vulvodynia email lists you will also have access to the vulvodynia chatroom which permits realtime interaction amongst visitors. To access the chatroom just click on the highlited words "Real Time Chat" that appear on the left side at the top of this page. I hope that this clarifies the situation and continues to meet your needs. I thank you all for your continued participation in this website and welcome any suggestions you have.
CommentHello, all--I wanted to issue a call to action from this guestbook to respond to an episode of HBO's "Sex and the City" last night (6/3), in which Charlotte is diagnosed with vulvodynia. The issue was handled in such a cavalier way, basically suggesting that taking an anti-depressant for a week and screwing up your courage to look at your vagina in the mirror will take care of the problem. The most painful part--scenes from next week's episode, in which Charlotte and her ex-husband Trey have sex on the kitchen floor. I've written a letter at hbo.com (under "Talk to HBO) and I urge you all to do the same, insisting that if the show is going to raise an issue like vulvodynia, the least they could do is present it in a way that isn't insulting, misguided, and utterly upsetting from those of us who suffer from this terrible problem. Thanks so much, Holly
CommentHi, I saw the episode of "Sex in the City" too and thought the mention of Vulvodynia was a double-edged sword. On the one hand I thought "wow - finally this condition is getting some attention as a problem that does affect lots of women" and then I thought "but for people to think it's just a little itching that an anti-depressant will take care of and then you can go about your normal life" hurts us rather than harms us! I wish they would show Charlotte unable to have sex b/c of the discomfort or something more realistic. But all in all, I think HBO deserves some props for even mentioning it. After all, they show Charlotte's husband unable to "last" for more than a minute and make a joke of it! As far as writing to HBO though - I think it's a great idea. Maybe they'll at least put some info out there via public service announcements.
Commentdoes Johns Hopkins have info. on Vulvodynia?
CommentDr. Glazer, Thank you for setting up the seventeenth vulvodynia guestbook. I agree that we probably shouldnt clutter the guestbook with posts when we can use the list serves. I would like to say that I have noticed that there are many people who post regularly on the guestbook that I do not hear from on the list serves (I am on 2). I like to use the guestbook to ask questions from thease people, and share information in hopes that they will contact me off the guestbook. I also like to respond to peoples questions or coments left for me regarding something I posted. I think that there are people who use the guestbook who would not normaly spend the time to use a list serve, or who only have a computer at work, or who are too embarrased to have anyone know who they are but are seeking answers( I have noticed alot of posts that are anonomous). It would be great if the guestbook where set up in such a way that it could be used in this way without the problems you spoke of. Christina
CommentI would like to use the lists to communicate with others, but I do not now how to access them. Could someone help me with this matter. I have currently been suffering from Vulvodynia for 31/2 years. Thanks
CommentDon't know how well this will copy paste, but here is theinfo from Lauren that Frank mentions in the last guest book...this info kind of fits with my theory of the bacterial infection...and also, I wanted to mention that Jen had said that she thinks maybe it is viral...there are many reasons to think that by judging the way it behaves, also it could be prions, or some other microscopic thing we don't even know about. It is just hard to ignore that there is a subgroup of people that began this hell with a new sexual partner. Here's the article.... Bacteria Hide in Urine After Antibiotic Treatment NEW YORK, May 29 (Reuters Health) - Bacteria may be able to survive antibiotic treatment for bladder infections by reverting to an inactive state, according to researchers from the University of North Carolina at Charlotte. Presenting at the 101st meeting of the American Society &n! bsp; for Microbiology in Orlando, Florida, Hadley Hartwell explained that bladder infections caused by E. coli, a common bacterium, return in as many as 30% of women apparently cured by antibiotics. Until now, the reason was not always clear. &! nbsp; Hartwell, along with Dr. Todd Steck, studied the ability of bacteria to survive exposure to antibiotics typically used to fight bladder infections with a test that compares survival with the reproducing activity of the bacteria. According to their laboratory experiments, the number of &nbs! p; bacteria reproducing dropped to zero within several days of antibiotic treatment. Not all the bacteria were killed, though. The test showed that about 3% of the bacteria were still present in a dormant state after treatment with ciprofloxacin and about 7% lingered ! after treatment with trimethoprim-sulfamethoxazole. Even after a month of antibiotic exposure, 10 million of the original 1 billion bacteria remained, the researchers report. The investigators conclude that antibiotic treatment does &n! bsp; not successfully kill all the bacteria participating in the infection and may, in fact, encourage many of the bacteria to persist in a resting state. Current treatments for bladder infections, they sduggest, may, therefore, not be adequate and this phe! nomenon may account for many of the repeat infections.
CommentHi all. I'm glad to see we're up and running again. I saw Sex and the City as well and I really didn't know how to feel. I'm glad they brought awareness to the condition, but they did it the wrong way. They joked about it as if it was no big deal and as if it can be cured. But we all know better. I don't want to waist my time talking about that show. I've just been diagnosed with having a UTI. I'm a little worried now because the doctor has put me on "SULFAMETH/TRIMETHOPRIM" which is an intibiotic and I don't want to get any yeast infections. I'm worried you guys! I'm very prone to yeast infections though I havne't had one in 2 years. Please offer some advice if any. Thanks much! I'm going to stay away from sweets and milk for the next 2 weeks.
CommentI noticed a post concerning use of the broadcast email lists. If you scroll to the top of this page, on the left hand side, highlighted, you will see both "Real Time Chat" and "Maling List". Just click on them and follow the instructions. I would be happy to co-ordinate specific times for group chats on specific subjects, or to come and answer questions myself at specified times. The email broadcast lists are an ideal medium for ongoing communication, and now have over 800 members. I most certainly do want to keep the guestbooks active as they are the most frequently visited part of the website, BUT....for ongoing communication the email lists and the chat room are much better suited.
CommentI did not see the Sex in the City episode, but my sister-in-law watched it for me. Correct me if I am wrong...we don't know if she is just going to "just be cured". Most people in the beginning don't understand that this will go on--most likely forever--interfere with relationship, and send you into anxiety and depression. The only thing that seems very unrealistic to me is that the doctor new right away what it probably was, and prescribed the anti-depressants, which typically is prescribed by docs that are very familiar with chronic pain/vulvodynia. Rarely would a typical GYN get all of this. For all we know she will begin to get very upset in following episodes, and begin to behave like us, and share more and more vulvodynia info. Do you think I am way off base with this? I am very interested in your opinions.
CommentRegarding Sex and the City, I heard that next week Charlotte will be having sex on the kitchen floor. That seems very unrealistic to me since antidepressants don't work that quickly and any of us know that intercourse is extremely painful to downright impossible when you have Vulvodynia!!!!!
CommentLynn: If you must take the antibiotic, please consider the following precautions: a reputable probiotic (usually containing a high quantity of lactobacillus *AND* bifidobacterium. Yogurt may cut it for some ladies, but I believe vulvodynia patients are already suffering from a weakened immune system, and need those extra beneficial bacteria. I would also approach your doctor and discuss the possibility of taking Diflucan while you're on the antibiotic. If this isn't an option, start supplementing your diet with garlic. I've read that 2-3 cloves a day should keep yeast growth to a minimum. These are all merely suggestions. I will certainly be following these precautions if I'm ever prescribed antibiotics again. Also, regarding the UTI--has your urine been cultured? I certainly hope so! That is the only way to correctly identify the bacteria causing the infection. Many urologists are no longer following the 7-10 day course of antibiotics routine anymore. Ask your doctor if you can come in for another urine test 3-4 days after taking your antibiotics. Otherwise, you may be taking them for longer than necessary. If you get a chance, read "You Don't Have To Live With Cystitus", by Larrian Gillespie. It's a very enlightening book, although she really doesn't discuss the possibility of yeast causing a lot of womens' woes. I think it's gonna take a few more years before that research takes place! Hope this helps. Jennifer and all: I watched the "Sex and the City" episode. I noticed Michael Patrick King wrote the episode. He's also one of the producers. The episodes always seem to follow a theme, and "taking a good look at yourself and accepting what you see" or "are you really what you see in the mirror?" seemed to be what he was exploring in this episode. I really don't have a clue where he may be going with the vulvodynia story, because I noticed the next episode has Charlotte having sex with her husband, as some other ladies have mentioned. Soooo, about the way the entire issue was handled...well, I can honestly say it didn't upset me much. Charlotte asks Carrie if she knows of a really good gyne, and Carrie asks, "Why?" Charlotte scrunches up her nose and says she thinks she has a yeast infection but it's sorta different. Then we see a shot of her face during the examination. The gyne snaps off her gloves and is very matter-of-fact. She says it's not yeast (this I think is realistic, how many of us have actually had an accurate yeast culture? Hands up? I don't expect many...) She tells Charlotte she has a whole file of women with the same symptoms. Antidepressants will help with the symtoms. She also wants her to keep a journal. The gyne is VERY matter-of-fact and not the least bit approachable or forthcoming with any additional information, such as support group, optional treatments, etc. I thought this part sounded a lot like what many of us have gone through! The scene in the deli where Carrie, Miranda, and Charlotte didn't offend me either, because it seemed Cahrlotte didn't realise the seriousness of her condition (due to lack of guidance from her gyne). Miranda and Carrie were kinda teasing her, but I think that's probably what friends would do if you weren't crying sand upset, I flet they were kinda trying to cheer her up because they felt the antidepressants would cure her and life would go on. Oh, and about HBO, they actually have a little blurb on the "Sexa and the City" web-site under that particular episode write-up about vulvodynian and how you can contact the NVA for more info, so I thought that was great that the NVA got through to them and made them realize that would be a very good PR move! Sandee
CommentTo Lynn: Please consider using some type of Pro-Biotic supplement. These are available through a good health food store. One such product is PB8 their site is www.nutritionnow.com . The anti-biotic kill bad and good bacteria, this product helps maintain the balance. Best of luck.
CommentHi, all--I have read with interest the discussion about the "Sex and the City" episode. I think my first reaction was a little extreme, but this is because I think the show is dippy and I felt that the way the issue was raised was shallow. Perhaps Charlotte will realize the seriousness of her condition later on, perhaps not, but I do think the omission of sexual issues just doens't fit with what 99.9 percent of women with vulvodynia experience. And kudos to HBO for putting up the link on their website, but I imagine there are some women who have painful intercourse and gyno exams but no constant itching and burning and won't be helped by it. I will be patient though and wait to see how it is treated in future episodes. Meanwhile, I've heard about using magnets for chronic pain help. Is this just for back pain, or has anyone tried it for v.v.? Thanks, Holly
CommentI am from Canada and I cannot find a doctor close enough to me that can prescribe Eastrace cream. I have heard many good things about it and would really like to give it a try. Does anyone know if you need to have a prescription for this cream in the United States? I live very close to the border so going over would be no problem. If so, how does one get a prescription when their OB/GYN and family doctor fail to give you one.
CommentSandee, thanks for your impression of the Sex and the City episode. Sounds like we kind of think the same way about it. Even on the off chance Charlotte is all of the sudden better, at least the name of the disorder is out, and hopefully if all of a sudden she is better, they will at least acknowledge that it probably was not vulvodynia and discuss a little how horrible it would be to suffer with that type of pain all of the time. Charlotte having sex next week does not mean much when it comes to the vulvodynia thing...how many times have people had sex when it hurts, just to bring some normalcy to a relationship....I did it for years! We have heard Frank share that his wife wants to have sex, even though she gets cuts, etc. So I still think that the show could go a variety of diffferent ways with this. I wanted to talk about the probiotic thing. I do not have a strong opinion about using them, but I wanted to share that two of the women with vulvodynia that went to Toth had an overgrowth of lactobicilli. One confirmed that she had taken tons of acidopholous. There is a condition, cannot remember the name, that entails TOO MUCH lactobiccili. I know this is probably the last thing people want to hear, that now you have to worry about too much of a good bacteria.
CommentStephanie--A prescription is needed for Estrace cream. :( I hope you find someone who can prescribe it. Note to all: I didn't see the "Sex and the City" episode but think it may not be completely bad--there are so many different levels of vulvodynia. Mine has been treated fairly successfully. By that, I mean that after lots of different treatments I'm finally at the point where I can usually have sex with very little pain, if any. I'd like to outline the various components of my treatment, but I also want to emphasize that I know these don't work with everyone. I'm well aware that many of you have tried everything I will mention and still aren't doing better. So I'm NOT someone who says, "Oh, here's the easy answer; it will definitely work." But maybe a few of you have vv that is caused by the same thing mine is caused by (whatever that is!), and perhaps these suggestions will work: 1. Medications: I'm on Serzone (antidepressant), Estrace cream, and Estrace pills. Word to the wise: Take Serzone at night; it can have some nasty daytime side effects (from fatigue to dizzyness.) 2. Cheap-o lubricant: I use plain shortening several times a day, and it has helped a lot. I used to have no problem with dryness, but when I got vv suddenly I'm VERY dry. I'm sure a lot of you know what I mean! Make sure you wear a pantiliner if using the shortening--it can seep through panties and pants. I find that shortening really stays there, unlike water-based lubricants. 3. I don't wear jeans, tight pants/shorts, or pantihose anymore. Skirts and loose pants or shorts are okay--skirts are definitely best. Thigh-highs are good, or, if you're really feeling risque, get some crotchless pantihose at a lingerie store. 4. God--I know not everyone believes, but I'm sharing what's worked for me--and just knowing He's there has helped, even though it may not help the pain itself. I hope this helps some of you. I know that many of you have tried treatment after treatment and haven't been successful. I've been fairly lucky, but I hope that HBO chooses to show a case that's really tough to heal, or even chronic. I'd prefer for America to see a bad case than an easier one so that they know how serious this condition can be. BTW, I signed up for the listserve the other day, and it's pretty cool, and easy to sign up for.
CommentOne more note: Instead of tampons or pads I use Instead, the little cups that fit over your cervix. You can wear it longer, and it doesn't dry you out, so it can be less irritating than a tampon. And it's made of good materials, no latex or anything. They have a website, www.softcup.com, and you can even request a free trial package. (And if you have a day with less pain, you can even have sex with it in!) It's been a lifesaver for me. If you've got specific questions, please e-mail me. I'll get them faster.
CommentHello everyone - This is my first post, and I actually don't have too much to say about my symptoms, as my symptoms have already been stated by the rest of you many times over. I have been in touch with Jennifer and have been to see Dr. Toth in NYC. I have not had any success yet, but promise to share every detail as soon as I do. I am posting this in response to Sandee, who on 5/25 complained about "pimples" along her jawline and elsewhere while taking antibiotics. I have the same problem with some antibiotics, especially if I have been in the sun. In my case, it was actually yeast, but on the surface of my skin, along my jawline and across my shoulders. The same thing happens to my sister. She told me what to do and it worked perfectly: Get Head and Shoulders shampoo in the NAVY BLUE bottle (not the regular stuff) get the plain shampoo, no conditioners or anything. Use it in the shower, lather up some in you hands, cover the affected areas, wait about 5 minutes, then rinse off. This always does the trick for me, hope it helps. I hope I can post some good news so share with everyone soon!! Christine
CommentSEX AND THE CITY: I have been talking and reading alot about the show since it was on Sunday night. I have been told it was a good thing that vulvodynia is finnaly getting some TV time, but thats all I know is how it made me feel. I went through a range of emotions...From I can't believe someone is finnaly going to talk about it to crying when they all started making jokes. Now its not that I can't take a joke and I often use humer in tough situations. But the fact that there was not one bit of concern, really upset me. There are so many levels of pain and different symptoms that women may have it is possible that Charlotte will be able to have sex next week. But they must also realize that they just gave her a life altering condition, a chronic pain illness. And as all of us know it can really get you down at times. Which is probably why I started balling when they were all making jokes and her doctor brushed her off. Anyway, I still don't know if it was good or bad. But I do know that I feel like I got punched in the stomach Sunday night. A blow that has put me in emotional downer and I had been doing pretty good lately. take care all
CommentI haven't read all of the posts and I can't comment on Sex and the City beyond I do not see it but at least they bring up the condition. Sometimes good comes out of bad, this mis informed mention might turn into something positive. Lastly Jennifer mentioned something worth looking into, the overuse of good bacteria. I have not heard of this condition in my reading but that does not mean anything. People often think more of a good thing is better. Use good sense when considering anything you read here. Jennifer sounds like a bright person and I'm sure she is correct. Take what you read here and investigate for yourself.
CommentCheck out the NY Daily News this Thursday June 7th - www.nydailynews.com. There's going to be an article on Vulvodynia. I don't know what section it's going to be in.
CommentThanks Frank and all for your advice about the probiotics. The doctor that prescribed it to me is not my vulvodynia Dr. I'm so scared to take this antibiotics. But I have to so can get rid of this UTI. But I'm going to go buy some PB8. Can anyone tell me where I can get it from? I have something else to say about "SEX AND THE CITY". I HONESTLY don't believe that Charlotte will ever experience on going pain since she was SUPPOSEDLY treated for the codition. Her doctor specifically said to her, " You have Vulvodynia. Don't worry about it. A lot of girls have it and complain about the itching, the burning etc.. I'll give you some antidepresants that will take care of the problem" Right there tells you that her condition is normal and isn't anything that can't be treated. Then after all that, she went and told her freinds what her doctor said about her having to keep a journal of her Vulva pain. All her freinds laughed (and so did she) as if it was really not all that serious. It was like a big joke to them. Well my opinion is that she is SUPPOSEDLY CURED now and I don't think that she will ever experiece any more pain. I don't know why the producers of the show picked our condition to make a big joke out of it. Perhaps someone, or so many people actually wrote the show and asked that they bring awareness to this condition. They probably got tired of getting letters and Emails and just finally decided to do an episode about it. Perhaps they think the codition is strange(which it is) so they made jokes out of it and at the same time, they brought a LITTLE BIT of awareness to it. They didn't take the condition seriously obviously. I AM SO SURE THAT CHARLOTTE WILL NEVER HAVE ANY MORE PAIN AGAIN! That's all that I have to say about SEX AND THE CITY.
CommentHi everyone. I've posted here many times before; but not recently...I have a very long story that I would rather not repeat. Instead, once I do repeat my point to my very long story, I will leave you with the dates that I have posted in the past if you'd like to read more. In summary, I began burning in March of 1994...After seeing specialist after specialist (for 4 1/2 years...); being prescribed you name it, I was on it...topicals and orals (steroid cremes, yeast cremes, antibacterial creams, antidepressants, anticonvulsants, Myofascial release, Biofeedback etc...etc...etc...Sound familiar?) I began seeing a GYN who does routine yeast exams when I see her and based on her findings (which are none in my case) never prescribes anything of the antibiotic sort. She explained the whole good bacteria/bad bacteria thing and how so many (of my ) Dr's were (obviously) dumfounded by my symptoms, and would prescribe 'stuff' anyways!!! Nobody (including my very own self) knew that this burning is directly related to an injury to my hip I had 5 months before my burning actually had begun! In December of 1998 (yes, 4 1/2 years later...), I saw a PT who confirmed that my body was out of allignment; thus making all my muscles in my hip and lower back area in spasm...thus causing burning in my vulvar. She has me do exercises to keep my hip/back in allignment and she does deep massage therapy and myofascial release. This makes sense but what I found out in April of 2000, makes even more sense. I began seeing a chiropractor who is licensed to practice Active release technique...This is NOT a routine chiropractic adjustment. This is a hands on manuever/massage technique. He confirmed that the muscles in my hip flexor were a 'mess'...scarring and adhesions...etc...The scarring has entrapped my genitofemoral nerve (which runs right through your hip flexor into your vulvar. He has been working at eliminating this scarring for over a year now. I have had more periods of being pain free for longer and longer periods of time...Initially, I saw him 2-3 times/ week for about a month and then for once a week for almost a year...Now I am able to see him every 7-10 days. I go even if I am pain free...and If I'm having an acute episode, I see him 2 times per week and it's usually gone within that week. This is it. This is my cure. I need to share it (again) with you. I will not preach, just advise...but girls, unless you KNOW for sure that you have bad bacteria and/or yeast and anything else surely abnormal down there, stay off the meds. Go get checked out by a Physical therapist and/or chiropractor. Honestly, I had no idea (obviously) I had hurt myself so bad...It is so hard to get 'caught up' in the gynecological aspect of this. I know...I have been there. Sometimes I 'go back'...Last week I was in the middle of a bad episode and convinced myself that I had an infection of some sort. NOPE...nothing. I am so thankful I have found the right doctors. Again, I do understand that some of you do have legitamite (sp?) abnormalities in cultures down there...But for those of you (and I know there's still quite a few) who have heard "There's nothing abnormal showing up; Everything's 'normal'....But I'll prescribe this and this..." PLEASE get help outside the GYN world. Here's a list of the past dates I posted if you're interested; feel free to e-mail me. I hope I've helped someone. 11th guestbook 3/28, 3/29, 4/1 (mary re ART) 13th guestbook 6/27 14th 10/9 and 15th 1/15/01, 1/16, 1/18, 1/29, and a couple more... Best wishes. Tammy
CommentI wanted to be clear that when I talked about the probiotics, I do not have an opinion one way or the other, I just thought I should share what I know. I went ahead and got a little info for you... "Cytolytic vaginosis (CV) is the current term for a condition of lactobacilli overgrowth. It is a little recognized but common cause of cyclic vulvovaginal complaints in women of reproductive age. CV is often misdiagnosed as candidiasis and most women have tried many antifungal medications both conventional and alternative, with little or no relief." The thing that is confusing to me is that I doubt that this condition is what started the vulvodynia pain in the first place, and most vulvodynia patients have a very low count of lactobiccili, but there could be a subgroup with actual overgrowth which is compounding the problem. I never really pursued reading about this so my knowledge is limited, but I figure if you are interested you will look it up for yourself.
Commentforgot to put the website I got that quote from http://www.vitanica.com/cytolytic_vaginosis.htm
CommentThank you Jennifer as well for your opinion as well. But I had to go take Franks advice and I just went and bought some PB8. I'm so scared to get a damn yeast infection! I came this far and I'd hate to deal with anymore pain. But I thank you again and I'm only going to take it for 10 days (which is how long I'll be on my antibiotcs) Bye now
CommentTo Jennifer: Thankyou for the education, I printed out the article so I could read it over more thoroughly. I'm willing to bet not many Gyn offices check for this condition. I thought I was pretty well informed on things such as nutrition, supplements and issues concerning my wife's gynecological health. This proves once again there is so very much to still learn.
CommentLynn, my gut feeling is that it is a wise decision to use probiotics such as femadophulous, or other lactobacilli products while taking antibiotics...the question in my mind is, "is it wise to use these on a consistant basis?" Many women do, and I think it is very interesting that the article states that this condition can mimic a yeast infection due to its cyclical nature. How many sufferers complain that they feel much better once their period comes? This same group has many times been told that their doctor did not find yeast. The conversatiuon Frank and you were having sparked me to share this info. I never read much on this, because I had a low to moderate lactobacilli count and I was much worse during my period. Glad you found the info interesting. I hope I did not cause you more anxiety about worrying about too much lactobiccili.
CommentI wanted to say that most of what I write about comes from reading Medical texts. I have one that I consider my vulvar disease bible (I will get you the name when I am home tonight). I get quotes and post websites from the internet for convenience for myself and everyone here, but I do not really take something as fact, or to heart unless I read in a medical text or from medline and even then in can be bad info. As you surf the web be careful. I think we tend to take anything in writing as fact (when I say "we" I mean people in general about everything from what the best type of corn syrup to use in pecan pie to vulvodynia) and people basically can write down whatever they want with no facts supporting it. I am especially weary of information that is followed by what product you should buy, which is seen a lot with herbal/natural remedies. Pharaceutical companies as well do this...there advertisements in magazines seem like informative help for what ails you, but in the end they are pushing their product. Medical Texts are based more on Clinical Observation and studies...going to a medical library for a few hours one day can be very informative (and stressful). Regular libraries will not have these types of books. It is a whole different world in a Medical Library.
CommentFrank, I have read your postings intermittently and want to say what a great guy I think you are. Hang in there no matter what. Your wife is lucky to have you. I too am fortunate to have a wonderful and supportive husband --even though we've not had sex for five years. To everyone else, I want to say that getting a custom-made cushion might be the answer to your problems. I am going to a rehab institute tomorrow and they are going to do a computer map of my derriere. I hope this will allow me to work pain free. (I've been off work for 3 1/2 months but am slated to return June 18th.) Unfortunately, I have a severely pinched inferior gluteal nerve as well as pudendal neuralgia --a douoble whammy that makes sitting an even bigger deal for me. BTW I wrote HBO about that Sex and the City episode (Executive Producer, Sex and the City, HBO, 1100 6th Ave., NYC, 10036). I hope everyone else writes, too.
CommentWhere has everyone gone? I just wanted to add that along with my low-oxalate diet, I am trying the anti yeast or candida diet and now I am convinced that that is the route of the problem. I have eliminated all sugar and dairy, except for eggs and american cheese (not too much cheese) which do not seem to bother me so much. Also, the melon that I was supposed to be able to eat has been bothersome. Very high in sugar and I was eating it on an empty stomach. The book says it is ok to eat watermelon, but wait 30-60 minutes after a meal. I find that is okay for me. I guess it is all in timing. Also, don't go for the aged cheeses! Use lemon or lime juices for zing to veggies and fish, etc. Those are okay to consume (avoid the peel and rind). Butter is okay if it is minimal. I have an anti candida book, which says Arrowhead Mills brown rice flour is okay to use and vegetable glycerine (Starwest Botanicals) in place of sugar in recipes. I tried that yesterday after ordering the glycerine on the web for pancakes and it was not bad at all. Of course, I will probably not make them everyday just to be sure. The flour I get at Wild Oats. The book has some great recipes for those who believe they have atypical yeast that does not show up on the lab tests. I cannot tell you how much I have improved over the last 2 weeks. I have still not found the right dosage with the thyroid meds, so I believe it is due mostly to the diet. Just thought I would share my last week close to pain free. Regards, laurel
CommentI've been surfing the web, and check this out.... http://www.newswise.com/articles/1999/5/VAGINOSS.UIC.html
CommentThis is for Holly who posted on June 5 who asked about magnet therapy in vulvodynia. I thought it was all a bit hippy but having read a lot on the net about the use of magnets in pain I am convinced there is something to it. And since I have started using them for myself over the past fortnight I can honestly say I think that is why I've recently managed to have sex with my husband for the first time in ages! Okay, so you may feel a bit daft with a magnet pinned inside your knickers...! I also have a magnetic bracelet which I have been wearing every day. Some may say it's pyschosomatic, but if it works, who cares?! If you are interested in looking into magnets further can I give you three bits of info which might fire your interest. One is this piece of research from Nashville - ************** Static magnetic field therapy for pain in the abdomen and genitals. Holcomb RR, Worthington WB, McCullough BA, McLean MJ. Department of Neurology, Vanderbilt University Medical Center, Nashville, Tennessee 37212, USA. Two adolescents with debilitating, medication-resistant, chronic pain of the low back and abdomen with intermittent pain of the genitalia were diagnosed with intervertebral disk disease at spinal cord levels that correlated with their signs. Both patients had undergone multiple evaluations by physicians of different specialties and both underwent appendectomy without relief of their pain. The history of the onset of pain was important in determining the affected levels. The pain of both individuals was mimicked and localized by percussion of the vertebral spines at the level of disk protrusion. This maneuver and careful review of the history were important in making the correct diagnosis in each case. In both patients, treatment with novel magnetic devices provided rapid relief that was sustained for more than 2 years. These cases highlight the need for careful evaluation and correct diagnosis of abdominal and genital pain in young patients to avoid costly and unnecessary medical intervention and the stigma of painful debility. ********** Interesting on two levels I thought. One is that the magnets can heal pain in the genital area but also it touches on the subject discussed on these pages about the nerves/pudenal nerve/old injuries being involved in vulvodynia. The second is on this site - www.medicinehouse.com/magneticcenter.html#Supplies. They mention only around 15 types of pain which magnets can be used for but two are interstitial cystitis and vulvodynia. So rare that people even know what they are! The third site you may want to look at is - www.tnp.com/therapy.asp?ID=1. It also has some very interesting info about the use of magnets for pain. I have been using a little one for the past couple of weeks and the inflammation I have had seems to be going down a little. I am going to buy a larger one which is said to be good for penetrating deep into the tissues. The company I am going to buy from says you use it for two hours a day max. If you want to try magnets, then there are few health warnings attached - don't use them if you are pregnant or have a pacemaker.
CommentGood advice from Jennifer. To Beth: thanks for the compliment there are times my wife would disagree. I may not be a prize but I do love her and intend on staying put.I wanted to mention that several days ago my wife was irritated and seemed to be getting a yeast infection, the clumps of discharge. I asked her to take the probiotics for a few days to see what would happen. Now four days later her discharge looks milky white almost exactly the same as when she was using the boric acid suppositories. I wish she would go in for a proper check of what this is. I wonder if things are getting better or if the lactobacillis is too much?
CommentHello Everyone! Laurel, I'm still here. I'm glad to hear you are doing good. I hope that the honeymoon was wonderful. I just got back about a week ago. I haven't had any good news lately, and I'm so tired of being negative. The next thing that my doctor wants me to try is biofeedback. Has anyone had any success with this? Please message back or email me. How's it going Lynn? I hope you are doing okay. I'll talk to you all later.
CommentDear Dr Glazer, sorry if we've been using this Guest Book in the wrong way. I have tried to use the email list and other chatrooms. Maybe I am just dumb but I can't figure them out and the system won't let me link my email address. I realise these Guest Books clog up your server. Perhaps the old ones could be taken off? Just a thought. Thank you for your ongoing work and concern in this area.
CommentI'm currently trying to figure out if I have vulvodynia. I've been to several doctors already and they are running out of answers. The waiting is driving me crazy because I want some answers. Has anyone been diagnosed with this condition, and then had a baby and had the condition worsen? Or in general does it worsen over time? It is not painful for me to have sex now, but I'm afraid that it may be in the future. Does everyone with this condition have painful sex or perhaps I have something else. My main symptoms are it feels dry/swollen/almost like a chafing when i'm walking or it feels like I'm getting a yeast infection. It changes almost daily. The area is red and somewhat tender. I just always have some feeling in that area. Has anyone gotten better with treatment? Does it ever go away or are the symptoms decreased? Thanks for your help.
CommentI was wondering if anyone ever goes to the chat room to chat? I have been in there many times and now one else was there. I was wondering if anyone would be interested in setting up a regular time to chat and share our experiences and possible ideas that might help someone else? I am new to this website and was wondering if anyone could tell me how the e-mail list works as opposed to posting in the guestbook?
CommentHi Stephanie C. Girl, I was so depressed today! I was at work crying because I was in a little pain again. The Dr. just told me that I had a UTI. So now I'm taking antibiotics. It's the 3rd day since I've been taking them, but I can feel that it's bothering me. I took Frank's advice and went and bought some probiotic stuff and I'm hoping that helps me to not get a yeast infection. Also my husband is getting upset at me always complaining about this condition. He says that he loves me and that's why he listens to me talk to him about it. But he's getting tired of me coplaining. I'm so depressed still! I'm eating Cookies & Cream icecream. I hate this having to watch my diet crap!!!!!!! It's driving me crazy! I've never tried Biofeedback but I'm thinking about it as well. I've never been in the chat rooms. I tried to a while back but just couldn't get through. I haven't tried after that. Does anyone out there lives in Arizona? I want to get as many people with this condition together so we can try to bring awareness to it in our state- we can put it on the news and go from there. If anyone's interested, please let me know
CommentAre there any other sufferers out there with no yeast? I had a comprehensive vaginal profile/culture (great smokies laboratory test) and it came back w/ Bacteria: Escherichia coli, gamma haemolytic streptococcus, and staphylococcus aureus; Yeast: No Growth! My doctor said she had never seen anyone w/ no yeast growth before. She put me on a homeopathic protocol including vitamin A & C vaginal suppositories and also a probiotic (one to insert vaginally and also another probiotic supplement to take orally). This did not elleviate my symptoms (itchy, burning, sometimes crawling feeling, painful sex, etc.) The next vaginal culture came back w/ Bacteria: gamma haemolytic streptococcus, alpha haemolytic streptococcus, escherichia coli, proteus mirabilis, and lactobacillus; Yeast: No Growth! I do understand that some of these bacteria are good, but in balance w/ yeast. On the commentary section of the vaginosis profile, it states that vaginal bacterial infections are often associated with intestinal bacterial dysbiosis. Failure to normalize fecal flora balance often impedes normalization of vaginal flora. So . . .I took a comprehensive digestive stool analysis (Great Smokies Lab) which came back w/ some normal bacterial flora, some imbalanced bacterial flora, a pathogen called Bacilllus cereus (a transitory germ associated w/ food poisening) and very small amounts of yeast (not Candida albicans). I'm thinking maybe it's lactobacillosis? I am so confused. I have my first appointment with Dr. Anita Blanchard, vulvular specialist, @ the Univeristy of Chicago next month. I was pretty excited to see that UIC has done research on bacterial vaginosis & lactobacillus viruses. Thanks Jennifer for posting that web address! Hopefully I'll get some answers. Thanks for listening.
CommentGlad to see a new guestbook. Problem was I was still on the 16th! A message for Lynn. Please try the anti yeast diet. I fear that you will have pain from the cookies and cream and don't want to see you suffer. I know it is hard to follow all of these strict diets, but the fact of the matter is that we do not have that choice. And yes it is very hard to see everyone around me eating whatever they want, but you will never get better if you eat chocolate and God knows what! Please don't give up. I am confident that all of us together will eventually find a cure. Get rid of the sugar too! You have come so far with the surgery and you can make thast recovery! Hi Steph! I have included my email address if anyone needs questions answered or needs some moral support. For Stephanie C, you should tell your gyn that the estrace cream is to be used topically and that may help you get the prescription you need. That is what I did. If that does not work, I find that the ingredients in the Vanicream are very close to that of the estrace. In fact, I have had better luck with the vanicream. Your pharmacist can order it if they do not have it in stock. The estrace contains estrogen I believe, but I have found that it does not help nor hurt me. Talk soon, laurel
CommentThis is for Sabrina. The symptoms you were talking about are basically the same symptoms I've had for the last 20 yrs and more so for the last 11yrs. I to can have sex at times where it doesn't bother me to much, but low and behold that one time that we do have sex and I'm in pain with burning and itching and swelling again. Sometimes I think it's my own secretions, sometimes my husbands semen, or maybe just from the friction, who knows? I just recently had a complete hysterectomy with bladder suspension surgery. I had both a prolapsed uterus and bladder. Also had cysts on both ovaries and one on my uterus. Luckily the pathology reports came back ok. I had urine leakage and it was aggrivating my vestibulitis. I just had the surgery 3 wks ago, so hopefully this will help some of my problems with the vestibulitis. I'm not fooling myself into thinking this will cure my vestibulitis, but I hope it will help some of the symptoms. I already notice I'm not having as much burning and not as much pressure form the swollen vulva glands, since I don't have my uterus sticking about an inch outside my vagina. I am now on hormone replacement therepy, since I know longer have ovaries. I notice I'm not as dry as I was before and that seems to help with some of the irritation. On my own I am using Bag Balm on my vulva. You can buy it at Walmart in the pet supply dept. It's in a green square can. It seems to help with the irritation. It was origanally made for use on dairy cows udders or teats. My husband kind of brought this product to my attention. Alot of people use it for excema and other skin irritations. I have posted in the past. My 1st posting is around July 4, 2000, if you want to read it, it goes more into the problems I've had over the years and some of the different treatments I've had. Will post later on to let everyone know how the hysterectomy went. It has now been 3 wks since the surgery and I am up and around and doing real well. Ready to go back to work. Suppose to be off 4 to 6 wks. See the dr next wk for my post-op ck. Take care everyone and hope we all have better and pain free days ahead. Chris
CommentThanks Laraul. I just feel so bad you know? I'm getting frustrated with this whole thing! I want you all to know that once I make it to the big times and become a celebrity, I'm going to let the whole world know about our conditions and bring awareness to it. Are anyone of you part of the vulva pain foundation? I have a question- What are they doing to raise money and bring awareness to the public about this condition? And why is everyone so HUSH HUSH about it? It's out there and it's time that we all let people know what's going on with us women! I'm going to make copies of a flyer and post it up everwhere go. The flyer's going to say " VULVODYNIA/ VESTIBULITIS"- IT'S TIME FOR WOMAN TO STOP HURTING AND FOR US TO FIND A CURE! WWW.VULVODYNIA.COM. That's what I'm going to do this weekend. Everywhere I go, I will post on buildings and walls and all that. Does anyone else have any suggestions? Please let me know.
CommentHas anyone had surgery and found that the vestibulitis came back?
CommentHi Lynn. I just wanted to urge you to join the VP Foundation. They are a great source of info and support. Joanne who is founder and runs the foundation is extremely busy, but she still finds the time to contact me personally (as do I) to say hello or let me know what is going on. They are doing the best that they can as far as funding is concerned, and no one wants to get the word out about vulvodynia or vestibulitis more than she does, but it is vey hard. She urges people to order the cookbook and she and other members walk for the human race, to raise money and awareness. I donate for that and periodically send money just because. Still, it is difficult to get the word out, but I feel confident in the next few years we will see a lot more on the subject, but have to sit tight for the time being. I know that she has solicited companies to support the cause as well. By joining the foundation, you can get all of that info in the newsletter (magazine) as well as the things she sends out. There are so many members now that it is hard for her to do all of this with the few volunteer workers in the office. And just mailing out all of the issues is an expense in itself. Joanne sent some a letter requesting that we write something on behalf of the foundation to get a grant. Hopefully that will be approved. Lynn, I think that you would be fabulous in giving her ideas and spreading the word to those out there (especially those who have no web access) and have no idea what the heck is causing their suffering. Please join if you have not, I mean all of you that read these comments. They truly are a wonderful organization and there is no way I would be at the point I am at today had it not been for them and Dr Solomons and his wife Ruth. Sorry to go and on. And a very HAPPY 70th BIRTHDAY to Dr Solomons! regards, laurel
CommentHello everybody. Lynn, I know it is very difficult dealing with this. My husband listens to me, but I don't think he understands me. When you start a conversation with your mate and it ends up with vulvodynia. I hate that! We are all here to listen to each other, no matter what. Try to hang in there with the diet. You have come too far to turn back now! Do you every post your email address? I tuly understand that you want to shout this out all over the world. I DO TOO! Laurel has really said some very comforting things since I have been on this website. We are all in this together. I may be in a conference in Phoenix in a couple of months so post your email address so that I can tell you more. Stay STRONG!
CommentThanks Laurel, I've been wanting to join but I never got around to filling out all those papers. But I will do that eventually and then I'll let you know when I'm in. Thanks!
CommentDid anyone else read the Vulvodynia article in today's NY Daily News? It's available to read online. Also, on June 13th, the Chicago tribune will be running an article on Vulvodynia in their women's section. That article will also be available online. At least Vulvodynia is starting to be acknowledged as a real disorder.
CommentLynn, There use to be a support group in Gilbert, Arizona for vulvar pain thru the VP Foundation. I think you said you live in Phoenix I might be wrong about that sorry if I am. Lauren is right maybe if you join the Foundation they will let you know where the support group is. It is nice to have support and be able to talk to women with this condition. So good luck on starting one or joining one....... Mary
CommentThe NY Daily News article was pretty good. Here it is for those interested http://www.nydailynews.com/2001-06-07/New_York_Now/Women/a-113916.asp
CommentDoes anyone else suffer with a rash on their inner thighs with their vulvodynia? I have had mine virtually constantly since my vulvodynia started. I think it's probably yeast infection but cannot find anything which will get rid of it. Siometimes it's just a few spots, other times (like today) it is hundreds of sore spots and angry red areas. I'm guessing it's yeast because it started when I had had the undiagnosed thrush for two weeks which then turned into vulvodynia. Please help! Have tried creams, tea tree oil, Hibiscrub, oils, powder etc.
CommentYou are welcome Lynn! Thanks for the article Jennifer, and for the kind words Stephanie C. As for kate in the uk, yes sounds as if you have a nasty yeast. You know each time you get a yeast infection, it worsens if the yeast has not been eradicated from the previous times, and voila, vulvodynia over time. So kate, I suggest you go on the strict yeast diet. There are many books available on the subject. But, along with that, you need to be prescribed either Diflucan or Nystatin (which some have had a problem with). Many see results in a month, depending on the degree of severity. Please try, but the meds alone won't help if the diet is not adhered to properly. Then, you will be able to wean foods back into the diet, provided they are allowed between the low oxalate and the yeast diets. You have your work cut out for you, but it can be done if you have the will. I cannot tell you how much improvement I am seeing by following all of these measures. By the way, although meats are allowed on both diets (except for ground beef on the yeast), I find that ground beef in general as well as chicken irritate me unless consumed minimally. I am telling you, hamburger just sets me off! The chicken is a little less irritating and I cannot figure that one out, perhaps the skin or what is being fed to the animal, organic meat or not. Thought I'd share. Take care girls and guys-laurel
CommentThanks Jennifer for posting that web address on the New Times article. I just read it and I feel so much better knowing that somone actually spoke the truth about our condition. I've made a print out of that article and I'm going to make lots and lots of copies and distrubute them out to public places and try to bring as much awareness and support for all of us. As Stephani c says, "We are all in this together" and I want to help out any way I can.
CommentJust to give credit where credit is due....thank you LS for letting us know there was an article printed by the Daily News in the first place.
CommentKate, if it is a yeast infection inside your thighs, then I have some suggestions...after bathing dry the area well by patting with a towel, and then use a blow dryer on cool to completely dry the area. Some people suggest corn starch powder, in place of talc powder to keep the area dry during the day. Also, do not where skirts/dresses. This is just something I have come up with myself, no one ever told me this, but unless you are very thin, and keep your legs parted when you sit (somehow I doubt that) your thighs are constantly touching getting hot and moist, so cotton trousers, and no pantyhose (but panties are fine) make sense to me. Having said all of that, I am pretty sure they can try to culture your infection, but you need to be off of antifungals for at least two weeks to get accurate cultures (I think I would go to a dermatologist for that). I think Sporonox for a week is probably your best bet, along with Nystatin cream to apply topically. Not sure if Sporonox is called the same in the UK. It is a Janssen product http://www.janssen.com/ which is approved for toe nail fungus, but testing is being conducted for vaginal infection, and other uses (of course it is already being prescribed for vaginal infection. And it is very possible that in the UK it is already approved for that). It is thought to have a much broader spectrum than diflucan. There is a black box warning, so be sure that you are not taking any of the meds that are contraindicated with this drug. I know many people that have taken this drug, and had no side effect at all, including myself. Good Luck, Jennifer
CommentJennifer, thanks for the acknowledgement. I've also heard that the Chicago Tribune and the Chicago Sun Times will each have an article on Vulvodynia sometime in the upcoming week. It's about time that things are starting to happen for us..
CommentHere's a press release that I just read. www.nva.org/press3.htm.
CommentYou can learn more about the media coverage of Vulvodynia by going to www.vulvarhealth.org or www.vulvodyniasupport.com They both have information on what papers are printing articles. The women who created these sites have compiled a joint press release and been in contact with many newspapers, websites and television stations. I also want to add that Dr Koop has added some information to his site. Read it at http://www.drkoop.com/dyncon/article.asp?id=9321
CommentI've finally been diagnosed with something...vulvodynia and vulvar vestibulitis. For the past two year's doctors have been telling me that nothing is wrong with me and that I think about my vagina too much. At least now I don't think I'm crazy, but now I don't really know what to do. I've been put on anti depressants and I have a numbing cream, but I want to get to the root of the problem and correct the problem. I'm twenty years old and I've been depriving my poor boyfriend of sex for a year and a half. Any suggestions?? Natalie (Ontario Canada)
CommentHey everyone, I tried to submit this earlyer but the list serve was bussy being updated. But I saw that I actually saved it so I am sending it again. I have been resting up so I haven’t been on to see whets new in a while.From what I see I have new reasons to not like talk show hosts. It seems to me that they rarely talk about anything too serious anyways. To Lynn, I am sorry if I confused you or anyone about my religious rant post:). I am a Christian myself and I actually welcome anyone’s prayers or support. However I have noticed that not everyone else feels the way you and I do. I thank you very much for your prayers and for your husband’s prayers. I find it comforting to have that support during times like this. When I typed that I had just read a bunch of posts from much earlier (earlier then your post too) where people where upset that people were saying things like blessings or I will keep you in your prayers. I was saying that when people say these things they are wishing well, and that it is not meant to be offensive in anyway. I was also saying that there are so many other things out there worth getting mad about that we should let things like this pass. In other words if you don’t like it and it is not meant as an attack ignore it. There are as many people on this list who appreciate that kind of support, as there are who dint. Maybe I wasn’t very clear when I wrote that. I typed it immediately after I read these things and I may have still been a little irked:) I am thankful for the support everyone has given me. Jillian, I have been tested for Herpes, Syphilis, Gonorrhea, HPV, and HIV and just about everything else under the sun. I tested negative for everything. I have had only one sexual partner and that is the man I married (so I would hope I would be clean or someone would be in trouble :) ). As for my recovery, I think I am doing pretty well. I did break a couple of stitches the other day, but I called the office and the nurse there didn’t think there would be any problem healing normally still. My biggest problem has been constipation. I have already had to use a fleet once. I was ready to use one again today even though I am taking 6 stool softeners a day. I didn’t have to though. Just after breakfast today I began having really bad abdominal gas pains. They got worse while I was using the bathroom. I was able to make a bowel movement, and the stools were not to hard (I hope I am not being to graphic), I was just having a hard time of it. The gas pain was incredible! I haven’t had that sort of problem with my IBS in a year. I am sure it is the Morphine from when I was in the hospital slowing down my colon even more. They warned me that could happen. But WOW the pain. The last time I had that happen last year, I had to have my husband stay home and be late for work to make sure it wasn’t my appendix or something. Fortunately I still had some Dicyclomene left that the doctor prescribed for my IBS last time I was having that kind of pain. I almost passed out! I was sweating cold, and my muscles just felt so weak. I really hope that crap isn’t coming back and that it is just the narcotics. Otherwise I am recovering pretty well. Josh(my husband) whent out and got me all sorts of crafts to keep me occupied that I can do lying down in bed or on the couch. He dosent want me breaking any more stitches. Josh has been an absolutly wonderful husband. I am truly blessed. I had my post op on tuesday and the doctor said everything is looking great. She wants to see me again in 3 weeks to determain my exact back to work date. She told me that she might want me to stay home 2 weeks more because I stand up all day at work and because my glands were 4 inches deep, and I had alot of scar tissue. She told me that the LS she found in early stages shouldnt need to be treated untill menopause if I dont breast feed if I have a baby. She also told me that because of how much scar tissue and how deep my glands were and all she wants me to deliver babys by cesarean. She told me she would type up a letter for my OB when I decide to get pregnate. I had some of the stitches removed because they were not disolving as quick as my body would like. I must say it feels much better to have those out. I'm now alowed to go out and visit as long as I stay reclined (still cant sit), and limit it to 2 hours max. I'm going crazy stuck inside. Christina Bunny Thanks everyone for your support Christina
CommentHi Christina. I am so so happy to hear from you. I know I don't know you personally, but you're always in my thoughts because you went through what I've gone through-making the hard decision to have the surgery or not and then to have it and deal with all the restrictions, that is just too much! So I think of you and wonder how you're doing and if you feel better or not. Now that I know that you're doing fine, that makes me feel better. I hope I don't upset you or offend you in anyway. But I'd feel guilty If I allowed you to thank me for praying for you. I don't pray Christine. I don't feel good about praying because It seems that whenever I pray, things will end up being worse. I stopped praying months and months ago. But I was saying that I have my husband pray for you. He prays 5 times a day and I asked him to pray for you each time. And he does. I don't believe that praying works for me. But to others (like my husband) praying is a very powerful tool. Take care and be sure to post often so you can let us know how you're feeling. Thank you to the girl whom originally informed us about the article in the paper. I'm sorry I don't remember your name. And since I'm thanking people, I thank Laurel, Stephanie and all the rest of you who offer your advice and support. You all teach me a lot about our conditions and I really do appreciate everyone's input.
CommentI have suffered from VV for over 6 yyears now and while I'm able to pretty much keep the symptoms under control,the price I pay for doing causes more mental anguish than I can bear.Then for the tv execs at HBO to have the nerve to portray the condition as they did really gets me peeved. If any of you get the chance you should go to the women's health board on MSN and read the harsh comments left there by women in response to a post left by a fellow VV sufferer. It will shock and sadden you.I didn't leave a message in response to them,but now that I'm thinking about it, I am about to pop back over there and do so.
CommentTo Rose: I have just posted a response at MSN. I mentioned ignorance and indifference in the attitude of some people. Until more people understand the illness that is the kind of response you will see. They either cannot or do not wish to educate themselves on Vulvodynia, all they see is their favorite show under attack. Ignorance is bliss, obviously they are insensitive and self centered. The Word is getting out on Vulvodynia, as it is spoken more and more it will be better understood. Collect your thoughts and post a response or post something to inform . Good luck .
Commenthello. i have similar symptoms and stories to many of you: i'm 32 and i've had this stuff for about 8 years. i took desipramine for several months and then went off it and continued to be pain-free for about a year. thensuddenly the pain came back. this was about 2 months ago, and the desipramine is not working this time. ( i should mention that my live-in boyfriend and i broke up also about 2 months ago, and i was very sad and anxious.) here's the other thing: one doctor told me my vaginal pH was too low (3.5, and it should be 4.0). then i read on the internet about cytolytic vaginosis. i decided to try baking soda baths and they helped A LOT, but only for about a day. so i tried douching with baking soda a couple of times. now i just feel really raw down there. has anyone had any experiences similar to this? it is making me really sad. i was planning to go to mexico in august to teach esl, and stay there for a while. but i'm afraid to go if i'm still in pain....
CommentHas anyone ever heard of a relationship between vulvar vestibulitis and blood in the urine? I have had a variety of tests and ultrasounds to determine the cause for blood in my urine, but everything has come up negative. My doctor sees no sign of infection and I'm starting to think it's my vestibulitis. Thank you.
CommentTO JILL: Yes, I've had blood in my urine from Vestibulitis. It wasn't visible to me, but my Gyn. saw it in my urine test. I then went to my Urologist who checked my urine again, and this time there was no sign of blood. It all correlated with my burning pain. Hope this helps. Sue
CommentHi Frank, could you tell me what is that web address for MSN? I'd like to check out what was commented about the Sex and the City. Thank you very much. Also I just want you to know that I'm doing fine. Those Probiotics you suggested must be helping me because I'm not feeling any worse or anything. I'm doing just fine(as long as I stay away from the bad foods)
CommentTo Lynn: I'm very glad the probiotics are helping, remember what Jennifer said and just don't overdo them. I just typed in msn.com and the site came up, then I chose the Women topic and then boards and Womens Health. I eventually got there. The comments on Sex and the City and Vulvodynia are around page six I think. I posted there and at one in the morning last night I posted something on the most current page one. I hope you continue to feel well, take care.
CommentI've posted a couple of times before here, but not for quite awhile. My 27 year old daughter is the sufferer and has had vulvodynia since she was 20. It disappeared for three years in the middle there, only to reappear a year and half ago simultaneous to a new sex partner. We live in California, but she went to see Dr. Toth at the end of April. He found an overgrowth of lactobacillus -- she'd taken some orally on advice of a local doctor to try to control severe vaginal strep -- and also Chlamydia trachomatis. I wanted to post this primarily because she had been tested for chlamydia on many other occasions and had always been told she didn't have it. Her partner had taken all the usual tests prior to starting sexual relations and he also came up negative. So it's scary to me to think that one or both of them have it, after all. She will finish oral antibiotic treatments on June 19th. Has finished a course of Zithromax and is now on Augmentin. She's still having up days and down -- at present the results are inconclusive. One other thing I wanted to add -- she's a grad student and the doctors in student health have told her on numerous occasions that they are seeing SO much of this these days. There could be lots of reasons of course, including just greater awareness, but this could also support the STD theory.
CommentI have extreme burning during sex and left very sore after, also it hurts inserting tampons. Any suggestions, as it's too painful to have sex!!
CommentLook at this guys. Lauren sent this out to her mailing list http://womenshealth.medscape.com/38647.rhtml?srcmp=wh-060801 I went ahead and just copy pasted for everyone below, so you don't need to actually get onto the site.. WESTPORT, CT (Reuters Health) Jun 04 - Researchers from Vanderbilt University, in Nashville, Tennessee, have evidence of a potential link between Chlamydia pneumoniae and interstitial cystitis. In a presentation at the American Urological Association meeting in Anaheim, California, Dr. Jenny J. Franke reported that 14 of 17, or 82%, of patients with biopsy-confirmed interstitial cystitis had tissue cultures positive for C. pneumoniae. In contrast, only 1 of 6, or 16%, of control patients without interstitial cystitis were positive for C. pneumoniae. "Our institution has investigated the association of C. pneumoniae and interstitial cystitis using two separate techniques. Previously we used polymerase chain reaction (PCR) and our current study used cell culture. Both techniques have shown a statistically significant correlation between interstitial cystitis and urinary C. pneumoniae infection," Dr. Franke said in an interview with Reuters Health. This implies that C. pneumoniae may be involved in the pathogenesis of interstitial cystitis in certain patients, the researcher said. "A patient's genetic susceptibility and C. pneumoniae strain virulence may play important roles and require further investigation." She cautioned that the findings need to be validated by similar studies at other institutions, with evaluations performed following response to appropriate antimicrobial therapy. I was suprised to see the post just before this saying that Toth found Chlamydia in a second patient, what I mean to say is I was aware he had found it, but shocked at the timing of the post, and me coming upon this article. Just in case any skeptics are thinking that Toth probably always finds Chlamydia, that is not the case at all. I know 6 people that have gone to Toth, and two have grown Chlamydia in cultures he has taken.
CommentLynn: I'm sorry I missunderstood you, thank your husband for me for keeping me in his prayers:) Its good to find other people out there that understand what I am going through. My friends and family are very supportive, but they dont really know what I am going through. Diana:: Thank you fro posting those web sites that will tell us about vv articals in the future. That is very informative. Jill: I have vestibulitis, and I have had blood found in my urine during a UTI. My doctor also diagnosed me with Atrophic Vaginitis. Blood found in the urine is a symptom found with that problem. Hope that helps. Rose: Thanks for mentioning the MSN board. I will be sure to log on to that and express my oppinion. Christina Bunny
CommentHi Frank, I just want you to know that I've just spent the last 2 hours reading those post on MSN. I've read your post and others and thank you for REPRESENTING for all of us women. I've made about 6-10 post so you can go read them if you'de like. I'll talk to every one later. Christine, I forgot to tell you that after I had my surgery, I was always constipated! But I eventually got over it about 3 months later. But now I've been constipated again for the past 2 weeks.
CommentTo Lynn: I read your post and you sure didn't hold back. My wife read mine earlier and she read a little of the one Rose wrote but it got to her and she started to cry. We have had such a strong sexual relationship before this started and it is a lose. I think when people grow old together there is a suttle change in lovemaking. This is very sudden and depressing. I can accept as fact that we may never have the physical part like before. I miss it but I have memories and hope for the best. I think my wife feels less of a Woman because she cannot make love like she once did. She knows I have a strong sex drive and I think that adds to her feelings. Hey sorry to get so deep with my thoughts, we are going through some tough times.
Commentdoes anyone else's vulvodynia feel like this -- sort of like you've been slapped in that area; not exactly a pain or a burning and certainly not an itching but more of a tingling but not exactly a tingling....i would love to hear from somebody who has the same experience, maybe we could compare notes and come up with some answers...
CommentJennifer -- any idea what the difference between c. pneumonae and c. trachomatis is?
CommentOkay, I too, am sorry that I have had to use this website to respond after difficulty in getting in the chat room. Perhaps my browser cannot support it. But I just wanted to say that due to the thyroid and the fibromyalgia, I have had constipation for years. Not only is it bloating, but painful as well to the v.v. And this is my theory. My pain USED to be the entire vulva. Eventually through all of my diets like the ow oxalate, it is resigned to the left side, unless the flare up is so severe it would be both (but that is not often) sides. My pain is largely up inside of the vulva, so it is not visible to the eye. Now, it may take me up to 2 weeks to move my bowels, and what a terrible feeling that alone is. Thus, the stool inside of me (obviously the left side) is building up and pushing on something in there. Ergo, Pain! I notice a relief in pain almost immediately after going to the bathroom. And the stools are hard (sorry to be graphic), so it is possible that just by going I am injuring the tissue inside. I have been using the vanicream in the vagina and the rectum, and it does help. I have just started to take mineral oil orally for the constipation, that is until the meds clear up the IBS. So, if there are some of you out there who can make that same connection, please let me know. Afetr feeling well for a couple of weeks, I have had some pain the past 3 days. I know as soon as I can get myself to go (and it is extremely difficult), the pain and swelling inside will subside by the next day. But, eventually the cycle wil start over again. That is just a theory for those who have pain up in their left side.
CommentJennifer, I wanted to know if I could trouble you into making a list for me here that I can print out that will show the various tests that I should be asking my OBGYN to have performed on me by the lab when I go to see him for my annual. Like I said before, he saw all kinds of flora a few years back, but tests came back negative. But, I know there is some kind of yeast in there and I want to know exactly what it is I am dealing with. And if you could help, I would appreciate that so much! And I remembered that when my son was born 5 years ago, he had thrush about a week later, and I recall the nurse saying it was a yeast carried by me that he got during childbirth. But I have not had a yeast infection in about 10 years, so I was definitely not treated for one at that time. But, I had spent a good part of my teen years on antibiotics for a nasty strep infection that took me years to get rid of because I built up immunity to all the anti's. Then, I had a bacterial infection in my early 20's that set this whole thing off chronically. So, I don't doubt there is something in the body that is there and does not want to leave. Any info at all that you can provide will be most helpful. I think my gyn will be educated by this too, so it could help others! Thank you in advance, Laurel
CommentExcellent question Karen. I was thinking late last night that I probably made it sound like these Chlamydia's were the same thing, and they are not. Bacterias are such a weird thing. C. trachomotis is the bacteria that is consistantly talked about as Sexually transmitted, and many times leads to PID and infertility. C. Pnemonia has recently been implicated in heart disease (the more you let me talk about infection, the more you will see that doctors should not be dismissing an infectious theory for any disease out of hand) I found this website, and I only read the first paragraph, but it seems to explain the heart attack connection... www.heartinfo.org/news98/clmydpneu120898.htm. They are now treating heart attack patients with zithromax in the hospitals, especially when they are young, and seem to not have typical risk factors. The discovery of the C. Pneymoni in the Urinary Tract is very interesting to me, only because I like the idea that scientists are looking at bacterial infection more and more as a possible source of these problems. I have said before that I and a couple of doctors that I know feel it is possible that sexual transmission of bacterial disease could be a starting place for other, what seems unrelated diseases (scary, right) remembering that this is just theory, none of that is documented anywhere. I think that this would explain a lot why certain diseases are on the increase. If they are contagious and not being treated, eventually the numbers would go up in alarming rates, but this is a tangent that I probably should not go down. Anyway, this leads into Laurel's question about what tests to have ordred at you nest GYN appointment. The truth is you need a lab that can grow anaerobes, aerobes, yeast, Chlamydia and Ghonnerrea and micoplasma and then have them report everything that grows, and then I can send the result to Toth if you want for an opinion, but I think you will have a lot of trouble finding a good lab. Where do you live Lauren? If your cultures usually go to Labcorp or Smithkline, they will just report back normal flora, they won't even report back what did grew, so you can at least have that interpreted by Toth! Actually, it is worth it to have your doctor do the micoplasma/ureaplasma urealyticum culture, she will need to find out the labs that do this, and have it sent there, mine came back positive from one of these specializes lab, so I trust it a little more. There is a good chance she already tested you for Chlamydia and Gonerrhea, but it is worth it for me to say here, that that is a specially ordered test that is NOT done in normal cultures at your yearly appointment. It needs a special type of medium to grow. Lauren I don't think I was very clear, because I don't have much faith in the cultures done by commercial labs, and I don't want you to pay for a bunch of tests that will not result in anything. Of the stuff I mentioned above...mycoplasma, gonnerrhea, chlamydia, anaerobes and yeast, what have you already been tested for?
CommentLaurel, I too notice that my symptoms are much worse when I am constipated, and unfortunately, since I am on so many meds, it happens frequently. I have been using Doxidan for a couple of months. In the beginning it helped immensely, but now less so. I think I will switch to mineral oil since it must be better for the body than even more meds. it seems natural that if one is constipated, it will put harmful pressure/tension on the pelvic floor muscles and surrounding tissue. Pain free days to us all!!!
CommentForgot to mention that constipation can be a side effect of many meds. It is definetly a side effect of narcotics, and especially for people that just had surgery...anesthesia slows down the body systems and it can take a while for the intestine to wake back up. I think I have mentioned before that I started having constipation in my 7th year if vulvodynia, along with colon pain, and when I finally had a laproscopy done they found tons of adhesions (from infection) and on my left side the colon was adhered to my ovary. Now that it has been separated, my digestives problems are 95% resolved. It is also worth mentioning that if you have had surgery in the past, you can develop adhesions from the surgery that can leave your digestive system screwed up too.
CommentLaurel, I thought I would type it out a little clearer...I am concerned with... Mycoplasma/Ureaplasma Urealyticum Chlamydia Yeast But, in general I beleive that standard treatments for these will not cure vulvodynia. The thing is if you have an infection of one of these things, you at least have to have the standard treatment, and many people are not even getting these diagnosed. Lastly, I would want to know the anaerobes and aerobes, but I do not think that any standard lab will give this to you, they will just come back with normal flora. When I was in my late teens I had strep throat 4 times. They wanted to take my tonsils out. They called it four times, but thank goodness I insisted on seeing another doctor, and Infectious Disease doctor, and he concluded that I was not getting enough of a strong enough med, and he gave me a new script of antibiotics and I have never had strep throat again. I never had a minute of vaginal discomfort or yeast infection during these months of antibiotics, and I had sex almost every day! I am convinced something significant entered my body, something pathogenic to cause such a screw up in my vagina. I tend to not think it was simply that I became unbalanced.
CommentThanks for the info Jennifer. This whole thing is not only frustrating, but so complicated! I am in Massachusetts. I am so close to NH, that my doc is in Salem, NH. I have been thinking about calling Dr Stewart in Boston, and I know that must be some waiting list. I will do it though tomorrow, but I do not know what she will be able to do for me. I have managed to get better educating myself since few docs can offer any new info! I believe the lab is Quest Diagnostics. They are the ones who said my 3 thyroid tests were negative, but my new doc found it on lab tests in the Boston area, so that tells you the faith I have in them! I have been tested for chlamydia (i had it in the early 90's) but that was supposedly negative. I am not exactly sure what I was tested for, but the bacterial infection I had that I feel brought it on wasn't gonnorhea, but I think the name had a similarity. I do have a mild form of HPV, and those are way up inside. I guess there are only a few (but there nonetheless). You know in the late 80's my behavior was less than desirable, so I really can blame myself for a lot of the infections. Here I am 30, married, and alive thank God. But, this is one of the worst things a woman has to bear. It pains me to think that people are getting this each and everyday, all races, ages, and they have no idea what a long haul it will be. Thank our supportive spouses for sticking around and helping us through the loneliness and sad times. Jennifer, do you still have all the symptoms? Or do you consider yourself near to cured? How long have you had this? You seem to know your stuff. Sounds like Dr Toth takes the time to sit and talk with you. Gives me the strength to call Dr Stewart. I hope that I can get these labs approved? Would Dr Toth really look at them? Thanks a million for the reply. I will take this info to my gyn and see if he will do it. If not, I will hound my primary. I am sick of being sick. Lynn is right. Time to take action, and I have gone from shy to persistent (nice way of saying bitchy) with doctors and will continue to do so until this can be eradicated for all of us. I am thankful for all of the help and ideas that evryone on this site has. And for Frank, I am praying for your family. I hope things look up soon. Talk soon, Laurel
CommentLaurel, so did I hear you right? You had an STD and then all of this vulva pain crap began? Don't blame yourself...thank goodness we are all alive!! I lost many friends to AIDS. Nothing to be ashamed of, I know you have heard me rant about how I cannot stand the prude uptight group of people that cannot bear to think it might be an infection. Having said that I hope if I have a daughter ever, that she has three types of vibrators and doesn't let a man near her until he has been tested for everything by Toth, and then when she is married they have my permission (just kidding, sort of). You know the gay population embraced each other, and came together when they fell sick, the heterosexual population points fingers, and tries to feel superior to the the next guy. There but for the grace of God go I...plenty of people were just lucky, not careful or prudent! So, we have to know what STD you had? And, I am curious to know what your doctor feels about my list of tests. Is your doc a GYN? There is a possibility that he won't even know what Mycoplasma's are, which makes me sick! And, Laurel don't waste your time fighting if he is ignorant, go to a doctor that knows already. Well, in the end I will admit that there is no way that I can know what is wrong with everyone, and I know the infectious theory helped me, but there is no guarantee it will help others. Most of the people who went to Toth are finishing up their meds within the next week or so, so we will start to hear if they are improving once their bodies have had time to recover from the medication. This will be important information for everyone.
CommentSorry Laurel...I am 95% better! I no longer have daily pain. My feeling of rawness and less elastic is gone. I do get some irritation/twinges fduring my period, but it is very mild, nothing to talk about. The redness on my vulva is gone also. I can have sex with no problem, although I usually need a little lubricant just to be safe. I do not feel like I did before I came down with vulvodynia, but I am amazed at how well I have done after this last IV. I thought for sure the tissue would have had permanent damage, I had had biopsy saying I had sclerotic cells, and that I had what looked like the beginning stages of Lichens Planis or Lichen Schlerosis, I don't remember which, I would have to look at my records. I would bet if I had a culture today it would not show that. By the way SMithKline said I had HPV, and found nothing else!!! I had expensive tests done that showed I did not have HPV, and experts at analyzing vulvar tissue told me I had the schlerotic cells, eosinophils and beginnings of the lichens whatever. The labs are crap! This is part of the reason I don't think everyone should go running to have tons of tests.
CommentTo Laurel: Thanks for the good wishes, I think we will be fine. Still this is difficult on a relationship. I agree with Jennifer that the labs are not 100%. Still I would like to have some testing done concerning my wife. I have had two sex partners in my life and I married the second. I'm not complaining or bragging, my wife said I was her only lover and I think there might be more than one cause for similar symptoms. Could be bacterial for some and genetic or hormonal for others. I hope someday to get an answer to why after eighteen years of frequent sex together with no problems other than an occassional yeast infection she starts to get raw areas and the tearing? Maybe I did pass something to my wife from my first sex partner but that would have been many years ago, why would the symptoms be so severe now? I have thought maybe her immune system is a little weaker . Sure would be nice to have medical experts rule these things one way or the other. The only event I recall having a possible impact on this starting is my wife stopping the birth control pill. Now maybe that has nothing to do with all of her symptoms but it could be to blame for some of them. I see no reason to make any judgement on women who are sexually active and get this terrible disease. The same way I don't think God punished gays by giving them aids. There are diseases that need to be cured plain and simple. Certain sexual practices put us at more risk so education is important. I have two daughters and I hope they learn to respect their health and understand their bodies. Hopefully they won't have to suffer from Vulvodynia.
CommentThe Chicago Suntimes ran an article regarding vvd and Sex and the City. If you would like to read it go tohttp://www.suntimes.com/output/health/vul11.html
CommentThanks for that article Diane.
CommentFrank, I agree that your wife would have been sick when you started having unprotected sex, not years later. The only possibility for infection for her, might be during a birth of your children, I don't remember if the vulvodynia started right after a birth? Also, Allison, who posted a couple of weeks ago used to get cuts like your wife, and she seems to be "cured" with the diagnosis of a pituatory tumour, and medication to help that.
CommentJennifer Could i ask -- i went back and read your posts but i don't think you say what treatment you did to make you 95% better. thank you!
CommentTo Jennifer: I remember that post her tumor caused symptoms like breast milk to form, an endocrinologist discovered the problem. My wife does not displ |
