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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Diane	CT	USA	2010-03-10 13:30:39
STEPHANIE and ELLEN: Thank you for your input. Maybe it was the vagisil but I had the irritation prior to using it, although it very well may have made it worse. The PT sounds hopeful, are either of you taking any meds as well? Also, I hope I'm not prying but are either of you in a relationship/married? I'm not married but have been in a wonderful relationship for 2 years and live with a great guy. I'm just wondering how you cope with that side of things.

Ellen	Iowa	USA	2010-03-10 12:49:09
DIANE, I'm so sorry you had to get HSV11 from your ex-husband. Not fun, and now vulvodynia on top of it. The Vagisil cream you used could very well have been the trigger of the vulvodynia. I know I can't use anything that has propylene glycol or parabens in it, and Vagisil does. My sister had her first experience with vulvodynia back in the early eighties when she was in her late twenties. Of course, then she was unable to get a diagnosis but she is sure is was something in the Monistat the doctor prescribed (you could only get it by RX back then) for a yeast infection. Then in 2002, she let down her guard and used OTC Monistat for a yeast infection and she got a horrible flare with it again and had to go on disability from her job for six months, and then could only work half-days for another six months after that. She is pain free now because she will not put any creams in her vagina or on her vulva. I researched further on my computer, and that is how I came up with propylene glycol and parabens as probable culprits. I, too, have a bad back, and see a chirpractor once a month (more if my back goes "out") I have had sacroiliac and hip problems in the past but not at the present. Don't really know if my bad back contributed to the vulvodynia or not. But I do know that NVA literature says they might be related. Keep up your faith. Brighter days will come. Ellen

Stephanie	NJ		2010-03-10 12:49:05
Hi Diane .. so your doctor diagnosed you had Vulvodynia. I know the ache you are talking about .. I have this as well. Physical Therapy has been helping me out ALOT .. also i just started using Valium suppositories .. they do great for me. Again, some things that work for me dont work for others. I do use the lidocaine when it is bad ( it does not cause me to burn more ).. but that is more for external tissue pain from after I pee .. then from the throbbing. Warm bath in Aveeno works for me as well .. calming. There is an AMAZING ice pack you can buy that is in the shape of a panty-liner that i just started using. I use it every night when I get home. Also, do some research online .. everyone's posts on here have been amazing .. i have taken a bit from each and tried a few different routes. And most important..no stress .... this definitely causes me to flare up! This is a great site - full of wonderful women that can give you lots of great advice .. also to help you move in the direction to find out what is helpful to you.

Diane	CT	USA	2010-03-10 10:43:09
ELLEN - I have had HSVII (thank you to my ex husband) for 10 years but only ever get outbreaks on my upper buttocks, never in genital area. Coinciding with my period Jan. 4th, I got an outbreak on my upper left buttock which resolved with my period. But I was left with constant irritation/stinging, especially on the left side. Prior to that, I had also been and still am seeing a chiropractor for low back/rt hip pain. Chiro says it is 'sacroiliac' issues. Anyway, when I was left with the stinging/irritation, I went back to my primary b/c I was concerned I was getting an HSVII outbreak in the genital area which I had never had. Turns out I didn't but I still stinging/irritation. I initially used vagisil cream here and there which did help but irritation kept coming back. Now it is worse, all the time. I don't know if it is related to the HSVII outbreak in combo with the bad back or what? All I know is I am not in a good place right now and I don't know what to do with myself. Thank you for your prayers...I am praying too...

Ellen	Iowa	USA	2010-03-10 09:58:31
LORI, That is really a nice idea - the prayer shawl. I can think of a lot of people I would make them for - if only I could knit. I don't know about taking up knitting. I still have a half an afghan made that I started so long ago I can even remember how to finish it. Yes, Lori, the Lord will get us through this. DIANE in CT, I know where you are at pain wise, as I was there three years ago. I cried constantly, and could not even wear underwear. You probably should not wear jeans even baggy ones until you have this under control. I wore loose fitting knit and corduroy pants from JCPenney. They are the Cabin Creek ones on page 110 in the Fall and Winter 2009 catalog. I just realized JCPenney did not send me a Spring and Summer Catalog, and I do not know why. Will have to check into that. I would not use any creams in the vulvar area or vagina. They have chemicals in them that cause a lot of problems. Both lidocaine and calendula cream burned me something awful. Do you know what started your initial flare with vulvodynia? It will get better, Diane. I will pray for you. Ellen

Diane	CT	USA	2010-03-10 08:07:26
STEPHANIE - all I have seen so far is my OBGYN who told me to use OTC 1% Lidocaine. I have not tried that yet as I am leary of putting any creams on after the pain I had with the Calendula. Other than that, she had no recommendations. She wants me to see a neurologist and is trying to get me an appt to try to determine where the nerve pain is coming from. I am on a waiting list to see a Dr. Elizabeth Stuart in Burlington MA, but that is anywhere from 2-8 weeks. I am also having an aching pain between my left labia and thigh that is like a toothache. How often should I be using the ice packs? and what other self medicines do you use for comfort? I have also been taking advil, I think it may help a little. I appreciate all the encouragement and any other tips.

stephanie	NJ		2010-03-10 06:44:47
Welcome Diane. I came across this site a few weeks back and it has been wonders. There are so many options to feel better. I had tried the Candella cream in the way beginning .. that does nothing. First, always try to wash after you pee .. to stop the burning. There are SO many different avenues .. physical therapy seems to help alot of us as it loosens up the tissue and nerve endings. Definitely keep up with the ice packs. What has your doctor told you to use in terms of creams .. to ease your pain! Keep that head up ... as we are all finding .. there are ways and we will beat this .. Praying for you ...

Diane	CT	USA	2010-03-10 06:11:02
I'm still new to this and have not started any type of therapy yet....but how does anyone function? I have a 10 year old daughter who misses her mom very much. I feel like I walk around on eggshells cause I'm so aftraid of the pain. All I can do is lie down. Also what clothes do all wear? For me, any type of pants besides sweatpants are painful right now. I wore loose jeans to the doctor yesterday and last night I was in extreme pain, had to use icepacks. I tried calendula cream and it burned terribly. Another night of crying. Please tell me this will get better.

Lori	VA	USA	2010-03-09 18:45:49
Ellen: I saw your post all the way down there about the prayer shawl. I prayer shawl is simply a knitted or crocheted shawl that is made while praying for the person who will be the receiver of the shawl. Alot of ladies in knitting guilds make these for people in nursing homes. Anyways, I found a really simple pattern for a triangular prayer shawl on DebbieMacomber.com website and I started one for myself. It is made with a real soft knobby yarn (Homespun) that is so cozy. This will actually be the first thing I have knitted for myself (I am always making something for someone else) If your not a knitter, youtube has some great demos to teach you how to knit. Ellen I'm glad to hear that prayer helps you...me too. God will get us through this! This too shall pass.

susan	florida	us	2010-03-09 18:45:41
Hi Girls. I did see Dr, Goldstein on 20/20 and I do hope he can help anyone that can afford to go to him and lives near him or can travel to him. If I could afford him I would go to him but I don't live there anymore and could not afford his prices. I just wonder when doctors charge so much is he just in it to become richer than he is or does he care about people who suffer as we do. I do hope all of you who get to him find that he is as great as he thinks he is. I am not having a great day by far so I am not going to sit for long. Take care and I hope everyone is having a decent day and evening and will post again. Fondly Susan

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