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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 1


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).

Mark

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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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