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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 …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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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.


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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!
mary jane

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

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