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,

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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ANNEMARIE	NJ	usa	2012-02-03 15:08:53
Hello everyone, HI Charlene, is that you...Yes I do remember you from Sheila, how did you know it was me??? I was hoping you were doing better than from long ago. I am not having as good a day as I have been but then we all know here, that this will happen. YES Charlene, this is a much better site to be on. I feel at ease and free to speak. Im not sure what you are using or doing at this time. I am now on neurotin 3x a day and that helps with the pinch in the skin of the vulva and the female Physical Therapist That I have seen has helped. My husband sat thru one of the sessions to learn some of the things that can help me at home and he has to do it for me. I can sit lots longer now without any problem but, OF COURSE, it is still there. I hope all of the women here can continue to share with me also.

Jane	Virginia	USA	2012-02-03 11:49:29
I am so sorry Jennifer, I did not mean to post in your name. To everyone, the post of 2012-02-03 07:34:02 was my post. Apparently my hands were ahead of my mind.

Charleen	Alberta	Canada	2012-02-03 10:28:45
Hi Hanna Thresa Susan Susie Jane Ellen Anna Maria all you wonderful ladies Thanks for posting even though you are sooo much better it sure helps the rest of us who are still suffering,just the fact that you are living a almost painfree life is sooo incouraging to me,i have been getting better but sooooo very slowly. Ellen I have the biodentical cream have been using it for 4 days now I am putting it on my inner thigh as close to the v as possible,i sure hope it works, even if it dosent i think i will stay on it any way as it is safer and it actually costs less than the hrt I was on 67.00 a month my hrt was 110.00 monthly.Thanks ellen for helping me out with the formula as my doc didnt have a clue she lets me try anything I want because she has been with me since this horrible condition started and knows how bad off i was.Anna marie and all the new ladies welcome to this site,it is a blessing to so many ladies.Anna Marie i know you through sheila glad you have found this site,there are so many precious women here to help you and many others.Have a great weekend everyone.

Jennifer	Virginia	USA	2012-02-03 07:34:02
JENNIFER: Nice to meet you. I am new here, only been posting since the first of January. You are so right, there are Many causes of this disorder and you need to keep looking until you fine the one or multiple causes and the one or multiple treatments that help. I suffer from nerve damage but a combination of medication, topical cream, physical therapy, diet and exercise has me at 95 percent. I am able to ride a bike and my horse again. My last spot on the clitoris is almost gone. I know what you mean about the pain being on one side or the other. At first mine with all over and as my treatments started working, it was only on the left side. One thing that you reminded me of was the need to have your yeast cultured to identify yeast that does not show up on a slide your doctor looks at during your office visit. According to the handout my vulvar specialist gave me, these unusual yeast include Candida Glabrata, Candida Krusei, and Saccharomyces Cerevisiae. I was negative for these. In the three months leading up to my condition, I was treated for a series of yeast and bacterial infections. The last medication I was given for a bacterial infection that you insert vaginally burned me and it never stopped. Over three years later, a lot of heartache and tears, I am still dealing with it. But I have to admit, I have learned a lot. One of these is the need for a healthy fresh diet and excerise (as I was able to tolerate it). Nice meeting everyone here. ELLEN, glad things are working with the new does. Take care everyone.

AnneMarie	NJ	Atlantic	2012-02-03 04:27:38
Hi Sally, Usually when I get that pain from a bowel movement it will last for the day, and I will take a tramadol for the pain and most of the time by the next day the pain is gone. I do believe that the female PT that I saw has helped me a great deal.

Sally	NY	USA	2012-02-02 16:50:36
Anne Marie and members...quick question. Some of us have pain with bowel movements. I was wondering if that pain lingers. Mine lasts a long time..days and days.. It feels like hemorrhoids, but my dr. said it is the V V. Does anyone else experience this anal pain? Boy, it is bad when you are in a general flare..which I am at the moment. (DARN) Jeans...I found some at Marshall's last year that gave me NO problem whatsoever. They are by a brand called 17/21. Plenty of room in the crotch. They are low rise but so stretchy that the "waist" area is very roomy. Just wear some long shirt or sweater over them, and you are good to go. Unfortunately, , I've worn these jeans to death. Thus , I went on a quest to find new ones. I thought I had found the perfect pair..stressed tested in the dressing room..but NO! Now I'm suffering.

Jennifer	CA	USA	2012-02-02 14:07:57
Sorry, got cut off in last post (so if anyone is editing this they can paste these together if they want) 5 doctors, accupuncture, yeast diets, too many supplements to count I finally found a physical therapist that specialized in pelvic pain. She found my pudendal nerve inflammed (which is common for vulvodynia pain, especially when it is only one side or the other) and my muscles tight, but she couldn't get me to make any progress. She referred me to a doctor who found that my uterus had tipped ALL the way backwards and was pressing on my rectum and pelvic floor and, eventually as it turned out, the glands in my vagina that caused me to make SOOO much discharge. I had the hysterectomy and that cured my discharge and the feeling that my vulva was ON FIRE (extreme heat feeling). Still not done though. Vulva still red and irritated and still have pain/sorness in vulva. (but can wear pants and work without crying!!!). So, I and the doctor thing it is still YEAST that keeps me so irritated. GOing on longterm yeast meds and using desitin to help the irritation from die off. - Please everyone go to a Physical therapist that specializes in pelvic disorders - Please get checked for endo, scar tissue, adhesions, uterus pressing on nerves - if you had an injury/surgery/birth that started that go find someone that specializes in pudendal neurolgia to help you!!!! - if it was an infection that started this you need to find some long term therapy to fix you and keep moving doctors till you find one. - if was an infection, get checked for celiac. this is a HUGE factor for WHY we are prone to get this mysterious yeast or bacterial infection. You might be depleted of nutrition. - Keep trying different pain meds to help you through this process. getting you out of pain will help relax your muscles and help your brain stop over reaction to nerve pain signals I am 70% better and on the road I HOPE to 100%

jennifer	CA	USA	2012-02-02 14:07:45
So happy to see posts again. I have suffered for a little over a year. Started with a yeast infection, over the counter monistat 1 day BURNED but worked. Then two days later burning was back. Diflucan 1 day, 3 days, 3 again, metrogel, etc.. you guys know the drill. All of it just left me with Swollen almost purple BURNING vulva with lots of discharge. My discharge problem was off the charts acutally.

Hanna	FL	USA	2012-02-02 10:34:03
Anne Marie, I have written you 3 times now, to the e-mail you are posting, if this is not a correct e-mail, post again and put on the right address. OR, write to me: hanna4vulvodynia@aol.com//////////////// Painfree day to all

Minnie	NJ	US	2012-02-02 10:28:42
A word about jeans -- though I might inerject here that I've been wearing either pj bottoms or baggy sweat pants for the past 2 week without panties, LoL -- I have a small jean boutique in my closet. We probably all do, right? The quest to find a pair of jeans we can wear for more than an hour or so without crying. I actually do have one pair that fits the bill, even if I do look a bit ridiculous in them. I tried on a pair of Levi's low rise skinny jeans, and to my surprise they are the most comfortable jeans I've ever owned in my life. They feel like I'm not wearing jeans at all, best of all, the crotch has ample room in them and has never bothered my "lady stuff". I usually wear them with long shirts over the top, so they really don't look all that bad, and they're not skin tight, just, well... skinny. I guess it's the concept of me being in my 60s and wearing skinny jeans that takes some getting used to. Other than that one pair (haven't been able to find another) I have the usual collection of jeans in several sizes and brands, enough to outfit half my neighborhood, at least....

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