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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

Heya,

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


How to go about dating when you have vulvodynia?

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How to go about dating when you have vulvodynia?

Post  kate-123 on Fri Dec 13, 2013 10:54 am

I'm new on this forum and I've never really spoken to anyone about my vulvodynia. I was only diagnosed about 2 months ago. I've been experiencing excruciating pain during sex for almost a year now. The first time it was painful I went to the doctor straight away and she said it looked like an ulcer. I had to ask her to test for STIs because she wasn't going to. All the tests came back clear. At the time I was also looking into possible autoimmune conditions but the specialist I saw only ended up diagnosing me with post-viral syndrome. Anyway, painful sex continued. I spoke to my doctor and she did an examination and more tests but couldn't find anything. I asked her for a referral to a gyn and had to wait about 6 weeks before I finally got an appointment. She initially thought it was thrush and I had to do a horrible 4-week treatment for it. I went back after the treatment but still had the horrible pain so she diagnosed me with vulvodynia. She put me on an increasing dose of Endep (which I hate - makes me like a zombie) and we will reassess in January. She said I would probably need physio after the Endep as well. I went to another doctor for a second opinion and she read it straight out of the textbook. She gave me a topical local anaesthetic to try if I ever want to have sex.

I could usually have sex once with bearable pain, but amy more than that pretty much had me in tears - felt like I was being stabbed, and lots of burning and pain for a day or two afterwards. It destroyed my sex life and I now haven't have sex for almost 5 months. Vulvodynia is so depressing, just knowing that there is no known cure and it could stick around for years. I'm single and I want a relationship. But I am now absolutely terrified of having sex. I feel like vulvodynia is manageable when you're already in a relationship and can be open and honest about it, and have enough trust to be able to work around it. How do you bring it up to a potential partner? I don't know whether I've been cured, and I don't know when or if I will be cured. Has anyone had any experience with vulvodynia whilst dating/looking for a relationship? Sex is an important part of any relationship and I'm nervous about how to bring it up...

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Re: How to go about dating when you have vulvodynia?

Post  21andcounting on Fri Dec 13, 2013 4:24 pm

Hi Kate,

I'm new to this forum as well. It sounds like you had a rough road towards getting your diagnosis. Most doctors I've seen before my current one have been completely oblivious to vulvodynia, it's insanely frustrating. I wish I had advice for you about talking to potential partners, but I haven't exactly figured that out myself. My method has usually been the whole "it will be different this time" approach, going for it, then having to make them stop and explaining why then. So my advice to you would be not to do it like that! It usually doesn't end well... Have you ever been to a vulvodynia specialist? I was also given the bandaid approach (the numbing cream) by my usual GYN, but once I met my specialist she really got me on track with different treatments that were much more effective. In my opinion, figuring out exactly what is going on with you and coming up with a real plan of action is the first step before being ready to seek a relationship.

21andcounting

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Re: How to go about dating when you have vulvodynia?

Post  Mark on Fri Dec 13, 2013 4:32 pm

Welcome to the group  Very Happy . Sorry to hear about your experience with v.

I don't know whether I could or should offer you any advice, being male, but I guess my experience is relevant because my wife has acute v, and has done since long before we met.

Are you single currently? I'm guessing so, based on what you've written. If so, I'd advise being upfront with any potential dates. That's what my wife did when I first asked her out, and the honest and brave way she dealt with what must have been a very difficult conversation for her is something I'll always admire.

As for sex, I came onto this forum to ask for advice myself when my (now) wife told me about her condition, before we'd even been out together. Several people said to me that vulvodynia makes you think differently about sex. Being crude about it, penis-in-vagina sex can be painful for some people who have v, and for others it can trigger their symptoms for several days. Rather than having it as something you tolerate up to once a week I think it would be better to avoid it. If you make yourself do something that hurts you, there's a risk you'll resent the man because you'll know it's just pleasure for him with none of the pain.

Unless a couple are trying for a baby, PIV is the least satisfying kind of sex anyway as most women don't climax from it. Most of us guys would happily do other things but don't always feel confident enough to ask. Ironically, we're having a baby now, and even that we did without PIV, as it triggers an 'episode' for my wife so the NHS gave us assisted conception.

I believe that some women's v extends to the clitoris, in which case oral or handjobs can also cause pain. If that's the case then it may be harder for you to have sex without your symptoms being triggered. If that's the case I don't know a solution other than continuing to look for a sympathetic doctor who can solve your symptoms (some women are successful in this).

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Re: How to go about dating when you have vulvodynia?

Post  mary jane on Sun Dec 15, 2013 3:05 pm

you could do what I did and simply mention this on a dating site with your profile
I did an experiment on myself and wrote "I have a medical condition and can't have intercourse"
I still had people interested...however in my case, I also can't be very active, walk for long, sit for long, as I have bloody pudendal neuralgia symptoms, and the mere act of dating is pretty exhausting...
but yes. with me, I'd rather be very upfront with it so I don't waste my time having to explain I can't function sexually in my 20s.
also, NOT a good idea to say this in the midst of passion!
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