Vulvodynia & Vestibulitis Helping Each Other A New Vulvodynia and Vestibulitis Support Group

Vulvodynia & Vestibulitis Helping Each Other
A Vulvodynia and Vestibulitis Support Group

Welcome to OUR page ladies!

The Cure?

I am a six year sufferer of VULVODYNIA, though much better at this time, knowing a flare up is possible at any time. I shall post my full story to show my VV woes. I have formed a support group here in South Florida and though it has been very interesting and helpful to us all, we all agreed that such a page as this, will be even more helpful. There are many pages for VV and Vestibulitis, but none are simplified and quick for just plain talk. SO…………..

This is a page only for communicating and helping each other cope and learn new ways (or old) to make us feel better. Not to cure, because this is only communicating with fellow sufferers. So, please keep that in mind when reading or writing on this page.

Please only give first name, state, country and e-mail address (which will not show on your post). Do not give telephone numbers, or home address, since it is an open page. I shall personally check the posts and if there is any unfortunate or harmful message posted, I must delete it. If you give the state/country you live in we can try to match you to someone in your neighborhood, for a possible support group. Please be informative and ask all the questions you still might have.

If you have a doctor or therapist that you have found that can help you with Vulvodynia/Vestibulitis, please post explaining where this person is and how you found him/her to help you. Other ladies in your area then will have a possibility to share in your good fortune. We shall place it in the Doctor Referral page as soon as possible.

	If you like the page and wish to communicate with other sufferers after your first visit, PLEASE CLICK HERE TO BOOKMARK THIS PAGE, it may not be listed by Google when you are ready to find us again
Vulvodynia

DEAR LADIES, I HAVE CREATED A NEW PAGE FOR YOUR PLEASURE, IT IS SO AMAZING THAT WE CONNECT TO EACH OTHER AND BECOME CLOSE AND DO NOT KNOW WHAT THE OTHERS LOOK LIKE. SO I MADE A GALLERY ( On top of the page ) TO PLACE YOUR PHOTOS ON AND SEE HOW THE PERSONS YOU HAVE CONNECTED WITH LOOK . Now you can put a "face on the case". and I shall place your photo in the gallery. I hope you all do so, it will really be great to know the face you are talking to. I hope you enjoy this new thing I thought of... <3......... Hanna

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Donna	NJ (Ocean County)	USA	2010-07-29 16:58:02
Having a flare up and my doctor is on vacation. I am going to his associate tomorrow. I was doing well thinking that there are good days and bad days. I was stupid and went to a waterpark twice in a week and I think the chemically treated water caused a flare-up. I read some of these posts and although it is helpful knowing I am not alone, I get depressed thinking this may never end. If it was another area of the body, one could talk about it opening and get sympathy and understanding. Because it is in a private area, it is taboo. My only peace is when I am asleep and believe me, I am grateful. If anyone knows of a doctor in NJ who is sympathetic to our situation, please let me know. Currently I am on my fifth doctor. He seems to be helping but is hard to get an appointment when there is a flare-up as he delivers babies as well. Thanks.

Charleen	alberta	Canada	2010-07-29 08:03:17
Hi everone hope all of you are having a less pain day.Laura the surgery i was talking about isnt vulvoectomeyits call a marring procedure the go under the vulva skin and cut all the nerve endings the dont cut out any skin but once its done you are numb in the whole v and it could make it worse and there is no turning back.Susan i hear ya yes the surgery is a last resort and you are right but when the meds stop working its so unbearable thats why i think of the surgery but i have not heard of this surgery in all the v stories i have read maybe my doc is a quack i dont know!!!! hes the one i told you guys about didnt even read my chart, The meds i am on now are working so please pray that they keep on working Teresa i have ic really bad this new drug i am on has sidefects of urine retenion i now have no problems with that it actually makes me normal and is helping with the pain its called noritriplyne, the constipation with any of these meds is terrible its a real battle trying to sta y regular, i dont eat cheese bananas white bread noodles or too much meat, that helps some.

susan	florida	us	2010-07-28 17:03:51
hello everryone. My pc is working again so I am very thankful . to Pat. I gather you went to cleveland ohio. I go to cleveland clinic all the time in weston florida. For our problem I see a dr, davilla who is a urgo/gyno. He is great. I have ic so he can take care of me as well as gyno. I also use all the doctors there and it is quite large but everything is under the same roof and that helps so much as each dr knows what is going on with me and everything that is wrong with me. Hope you get help and do hope every one is doing ok. To Charleen. I am not a doctor. all my drs that I have ever been to and that is many says never surgery. If you think we have problems now that way is not ever the way. I would never think of it,. Many years ago I spoke with a dr office in miami beach and he did that surgery but I don't know now a thing about it. I hope you find a better and I wish you the best. Must get off and hope all of us have a decent night and a better day coming. take care Fondly Susan

Thresa	ILL	USA	2010-07-27 15:03:21
My ickies are better.i must of went through a flare ugh but seem better now.My biggest problem is the urgencys.I still get vulvar pain but not as bad as I use to.I hope you back does get better.I have back issues at times too when everything is tight. I think all the treatments are helping little by little. Hoping your page gives me more insight to the urgencys . I hope all the women on the forum are finding help ful hints on how to help themselves cuz as we know Docs are clueless.Trial and error thats what I have been doing. trying different foods and different therapies.I really believe the Physical Therapy and relaxation is so important. The Elavil I believe helps re-lax me.I am unfortunately a hyper person and I can get anxious especially with this condition. I try to relax and when I do the pain is much more tolerable but in the beginning I would actually cry. 3 years now and I am still trucking along, but I believe we all will find that one or 2 things that might make a difference for us. Has anyone ever sat ona donut.my PT says it helps a lot and keeps you from sitting directly on the ouchy. I know this does help also but can't carry a donut with me all the time. Also very important my support group leader in Ill. rinses after peeing and let me tell you that really helps and is soothing.I use cool water. We need one of those Bodets I think they are called. haha But I don't know if I spelled it right. I can still ride my bike I ordered a seat called THE Spongey Wonder It works great. hope to see more women having pain free days Love to all Thresa

Kathy	new port richey, fl		2010-07-27 15:03:17
Hanna , may I have Desiree's e-mail I would like to know of any PT's or Drs she would know of in the area

Laura	MI		2010-07-27 02:32:37
Charleen- The surgery you are describing sounds like vestibulectomy. I am considering getting one also. Try this website they describe it more detail and they also have a message board where woman post about the surgery and there experiences pros and cons. The part that scares me that it can make it worse. http://www.hisandherhealth.com/sexual-health-bulletin-boards

Charleen	Alberta	Canada	2010-07-26 08:12:13
Hi everyone I hope you are all having a painfree day I woke up last night with that terrible burning again, I use to be able to sleep without pain the burning at night scares me because its sign that my pain meds are going to stop working again i have been through so many and for some reason my pain meds only work for me for a short amount of time i worry that my doc is going to run out of pain meds dose anyone else here have the same problem? My gyn mentioned a surgery called the marring procedure they cut into both sides of the v under the skin and then cut all the nerve endings so that you will have no feeling at all in the v and uretha has anyone heard of this? i cant find it on the web nor have i seen it write about by any v suffer Iam considering it but really!!!! not sure, it could make it worse but my quality of life right now is very poor. Never in my wildest dreams would i have thought i would end up with vulvodynia this is such a nasty disease it only men got this then there would be a cure.Tracy i cant beleive how insensitive the school is and i cant see how your poor daughter is going to be able to sit on the hard seats.whats the big deal she would only be carring a pillow around its not like they be putting a special ram in for a wheel chair or anything its so stupid.My doc checked my pelvic floor and she said it was perfect has anyone else have this and the v?

Ellen	Iowa	USA	2010-07-26 08:12:05
Hi PAT and EVERYONE, of course!! I'm not surprised at all that an allergy to those glycol chemicals didn't show on the allergy tests because I am not sensitive to them either if they are put on my regular skin but it's a whole DIFFERENT story when those chemicals come in contact with the mucuous membranes of the vulvar vestibule or vagina!! So I think allergy testing would be totally worthless in our situations!! So the best thing to do would be to quit putting topical meds containg those glycols on the vulva or in the vagina. If you get a yeast infection use diflucan (taken orally) or the Monistat Ovules which you can get over-the-counter. They are little wax suppositories that don't have those chemicals in them and I can use them with no problem but do not use the cream that comes in the package with it. Also, have your doctor prescribe Cleocin Vaginal Ovules if you get bacterial vaginosis. I hope this helps. I wish I knew of a good doctor in the Buffalo area to recommend but I don't even know of any good doctors for this condition in Iowa where I live!! Ellen

AnneMarie	NJ	Atlantic	2010-07-26 02:38:20
Hello everyone, I found this site from a fellow sufferer...I am 63 and was diagnosed after several horrible months, with lichens scelrosus. Yhe diag. was given to me both by my dermatologist and GYN. Aftter tons of research I first used a testosterone compound, I felt better but I used it too often and got some terrible side effects. Then I was diag. correctly and my research brought me info. to use clobetasol 2x a day for 3 monts. It was a life saver. 2years later I have the Lichens under control and still have to use the clobetasol. I forgot to mention I also use Estrace hormone creme. At first I was using only on the outside of the Vulva 2x a week but I think I need it more ofte. My Gyn told me I could insert it up to 3 times a week. 1mg/ My dermatologist told me 2weeks ago that the Lichens is under control and what I am feeling now is vulvodynia and that is not his field. I am now having pinchy irritation in the vulva mostly when I sit. Thank GOD that deep burning is gone. I also have some pain in the Buttocks area. I dont get this every day but it sitll scares me that I will get worse. Sometimes I use Lidocaine and sometimes I use just A&D ointment. If I take a low does of zanax that also helps to calm the nerves down but I usualy only use that at nite. Does anyone have the Pinchy irritation?? Thank you all so much for listening and I hope someone can give me some imput and hopefully I have been able to give some information to others. Also, for my Buttocks I am doing some Physical Therapy and using a heating pad when the Butt cheecks hurt.

Pat	New York	USA	2010-07-25 05:54:50
Ellen- I wish I had read your post 2 weeks ago. When I went to my last gyno and told him about having a sensitivity to polyethelene glycol he said I may be allergic to he stitches used in my cystocele repair. He sent me for patch tests on my arm which included polyethelene glycol and other substances used in compounded medicines. Of course the patch testing came out negative. I then I did my own patch testing on my arm of all the internal meds I was given that burned. Only one gave me a reaction--lidocaine-baclofen-ketprofen. That was the last one I used just before I was diagnosed with lichen sclerosus. I know he won't believe me that I have a sensitivity when he gets the results of the allergy testing. Doesn't matter. I just got back from Cleveland Clinic where I saw a gyno who does beleive me. I most likely will be having surgery to release the scar tissue that is causing burning when I walk, sit and bend. She also said that my vulvar atrophy is most likely not caused by lichen sclerosus, but from contact irritation from using topical meds for a year that burned. She isn't sure I have VV either, but doesn't know why the nerves near my urethra are so sensitive. I wish I didn't live 3 1/2 hours from Cleveland. I would use them as my regular gyno. Does anyone know any good gynos in the Buffaly NY area? I think I need to switch

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