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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

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: 6

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: 1

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


Hi from the newb

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Hi from the newb

Post  ButterflyLiz on Fri Nov 18, 2011 10:49 pm

My name’s Liz, I’m 26 and I’ve had vulvodynia for 10 years – looks pretty scary when I write it down! For a lot of that time it has been manageable and there have been times when it seems to have almost gone away completely…almost but not quite.

This year has been a challenge. In January I had a mega flare-up, worse than anything I can remember. We’re talking stabby, burny, electric-shock hell. It blindsided me – things had been ticking along reasonably smoothly on the vulval front up until then and all of a sudden I couldn’t even get out of bed, let alone drag myself into work. Things did calm down, albeit slowly, and my pain is back to more of a normal pattern now, but it left me really scared.

Once the physical pain started to subside, I started to have panic attacks, which I’ve never experienced before, and generally felt stressed & anxious all the time. It didn’t take me long to realise that this was a reaction to the sudden onset of the horrendous flare. I went on a three month course of antidepressants which helped me a lot but I’m still way more anxious than I used to be about all things vulval.

In a way though, it was a bit of a push to me to accept this condition as part of my life and make the necessary adjustments, which I had been struggling to do. I am fortunate to have found a wonderful consultant several years ago who has helped me enormously (not least of all by putting me on pregabalin – lifesaver), but I think on some level I still wanted to pretend that I didn’t really have this. Now I’m having CBT to help with the anxiety, physio sessions & seeing a neurologist next week, after being on his waiting list since January! I’m also going to the VPS conference in London in December with my partner. Is anyone else going? I’m really looking forward to it.

Anyway, so glad to have found this forum, not sure why I haven’t looked for something like it before.

Best wishes to you all xx
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ButterflyLiz

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Re: Hi from the newb

Post  skippypie23 on Wed Nov 30, 2011 1:14 pm

Dear Liz,

You have clearly been extremely strong and constructive in dealing with this. And it's truly wonderful that you have found a consultant who can actually HELP you! That's a huge deal!
I haven't even been able to find anyone who even considers vulvodynia when I bring in my research and describe my symptoms.
You mentioned pregabalin; does Lyrica help with the vulvar pain or is it mainly for anxiety?

It's awful how much this condition can affect you on a psychological level. Sometimes I feel like the pain is being caused by my fear of hurting, if that makes any sense. I really hope you keep getting better, and please keep us updated with your progress with the neurologist!

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Re: Hi from the newb

Post  ButterflyLiz on Sun Dec 04, 2011 8:21 pm

Hi Skippy,

Thanks, yes, I guess we tend not to give ourselves enough credit for how strong we actually are to deal with all this crap! And then it comes as a surprise when it all gets too much…

Anyway, I agree, I’m very lucky to have a knowledgeable and compassionate consultant. It’s nothing short of tragic that the same can’t be said for every woman with v troubles. My heart really goes out to you. Is there any option for you to try and see someone in the UK? I’m not too sure what the options are there.

The lyrica is 100% for the pain. I’ve been on it for about 3 years now and it slowly but surely reduced the severity of the pain. For about a year or so I was *almost* back to normal & could have sex if I was careful. It was when I came off the lyrica for a few months that I had the wicked flare-ups so I’m well and truly back on it now!

It totally makes sense that it feels like the pain could be caused by your fear of it hurting. It’s likely that to some degree your pelvic floor muscles are unconsciously tensed all the time against the pain, which actually will increase the pain, so re-educating your muscles down there to be relaxed all the time will probably help (I’m in the process of doing this). However, I don’t think that this is the full story. It seems like most women need to approach treatment from several different angles at once.

Thank you, I have had a really good few weeks pain-wise and will post something more detailed soon. All best wishes to you, and feel free to ask if there’s anything you wanna know.

xx
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