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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0

Confused and Looking for Answers!!

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Confused and Looking for Answers!!

Post  Kate1981 on Tue Sep 11, 2012 4:34 pm

Hi everyone

I was diagnosed with vulvadynia (vestibulodynia) 6 weeks ago and im finding it all very difficult to deal with and understand. When I first had sex I was very tight and it hurt which I imagine it does for everyone. As time went on I had normal painfree sex with the same partner for the next 5 years. During my second relationship of 10 years I noticed I got occasional burning during sex and an uncomfortable feeling for the rest of the day but by the next day I was fine. Sometimes it hurt upon initial penetration but then I was ok. Ive never been able to use tampons so I assumed I was just small.

I started seeing a new partner a year ago and this is when the intense pain and burning started. The first time we had sex after 3 days i had an intense burning sensation to the right hand side of my vulva and into my vagina. Initially I thought STD and went to the sexual health clinic all tests came back clear said it was a uti and gave me antibiotics and within 9 days the burning disappeared. For the next 6 months I was fine had amazing pain free sex. I then had a routine smear test which caused pain in my urethea causing another uti so was back on antibiotics. This cleared and I was fine once again. 1 month later we were away on holiday and had lots of sex. The last day of the holiday the burning started once again and it was also hurting to urinate so thought it was another uti infection and was given another lot of antibiotics.

I was then fine again up until 6 weeks ago when the burning started again and this time it hasnt stopped. It has been so intense and I also have a stabbing type pain up into my vagina with a kind of throbbing sensation. I havnt been able to work or leave the house. I went back to the sexual health clinic and was tested once more this time they tested for herpes as well through blood all tests came back clear. I have no marks or anything to see just maybe a slight redness just inside. The doctor at the sexual health clinic said straight away it was vestibulodynia. He performed the qtip test and I jumped every time he touched the area just inside the vagina.

I have read and read about this condition and I am totally devastated at the thought I may have this forever. I have been put on amitripline initially on 10mg but now taking 30mg a day. The pain has massively improved however the burning still remains but not so intense. I am so confused do symtoms come and go? Was the slight burning and uncomfortable feeling I sometimes had with sex be a sign that ive always had it? Im so confused!!!! Sex doesnt usually cause me a lot of pain or discomfort its just these 3 occasions its caused this intense burning and pain a few days later. Is this usual for v? The doctor who diagnosed me also said my vagina was very small so could this be the reason for the burning? At the moment sex isnt even a possibility but I am scared that I will never be able to do it again because of what it may cause afterwards.

I have ordered some dilators to see if that helps. Ive also been referred to a vulval specialist clinic where hopefully they may give me some physio. I also suffer with IBS mainly constipation and im wonderring if this is related. I also have a lower back pain and restless legs but only in my right side the same as my vulval pain.

Any help or advice would be massively appreciated as im going out of my mind.

Wishing all of you suffers some painfree days and positive treatments


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Re: Confused and Looking for Answers!!

Post  scrumptuous on Wed Sep 12, 2012 7:27 pm

Dear Kate,

I have only just joined the vulvodynia support group, this evening, after coming across the site. I am 55 years young and have lived with vulvodynia for 21 years. Can I immediately reassure you, that yes you will be able to accept living with this condition and manage to continue with your life. Following a gynae operation 21 years ago, I developed severe pain and burning. As mentioned by previous members, I was constantly told there was nothing wrong, but I knew that there was. I like you attended the GUM clinic (I have been with my husband since I was 15) thinking it may be herpes, as you try to search for any answer. All my swabs and tests always came back negative. Years ago, very little was mentioned about this condition and I spent the next ten years having injections into the area (anti-inflammatory, which were very painful) and many operations removing skin from the vulval area. I actually had a right sided vulval skin graft at St. Mary's Manchester, because this was the only treatment offered to me. It was'nt until many years later, that a Consultant at Hope hospital actually told me that cutting away the area only temporarily relieves the condition (after weeks of recovery from the surgery), as the nerve endings re-grow and so the condition returns. It would appear to target certain types of women. I was also diagnosed with fibromyalgia, IBS, litchen planus, thyroid antiboidies and am definately a person that worries. When my stress levels rise, I definately suffer most. This aside, I have been married for 36 years to a very understanding husband. As like many of the other women have mentioned, it can have a massive impact on your status, as a woman and your sex life, but if you cannot cope with full intercourse, then there are many other ways to be intimate and still feel close and loving. I myself still needed to fully make love and would consentrate on the nice feelings at the time. Yes, I knew that the following days, I would be extremely uncommfortable, but I also knew that this would then return to a level, which was acceptable and that is how I coped. You will find your own coping strategies. May I say that over the years, I definately have more better days and manage to live an active 'normal' life. I would advise you to only shower and not bath, as I never use soap, talc or anything else in the area. I also stopped using tampons and even found that certain tiolet papers were better than others (I'm not sure if there are bleaching agents in some of them). I gave over using any sort of creams, as I have found that my own body eventually returns to a copable level. With any diagnosis, there is always anxiety and fear of loss of control and in the early years, I did question why me?, but now I am aware that I am not the only one, there are many other women like us. Never feel that you are on your own and believe that the situation will greatly improve, it just takes a little time.



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