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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 …

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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 …

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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 …

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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


Do we belong?

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Do we belong?

Post  Cait on Sat Sep 17, 2011 10:47 pm

Hello, I'm a transgender woman and I'm asking on behalf of trans women with vulvodynia whether or not we belong in a forum such as this. Obviously we wouldn't want to intrude if we're not welcome - i.e. if our pain is less 'legitimate' because we were not born with vulvas and we had surgery to create them.

~Cait.

Cait

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Re: Do we belong?

Post  Mette on Sun Sep 18, 2011 10:25 am

Hi Cait

I'm new to this forum as well, so I don't know what the general consensus is, but in my opinion pain is pain.
To me the worst thing about this disease is that it makes it difficult to have a normal sex-life, which makes it difficult to have normal love life. From looking around on this forum it seems that a lot of women feel that way. I can't imagine what that must be like for you. Trying to establish an intimate relationship with someone with all the prejudice and stereotypes on top of all the problems the rest of us are experiencing. I can only imagine the frustration you must feel, when you finally get the body that you want (I imagine that it is a very long and difficult process) and then you a still not able to live the life you long for because of this horrible condition.
I think we can all relate to the frustration that comes with the tabu of this pain condition. And just because you had your vulva created it doesn't mean that it is less real.

Did your pain come as a result of the surgery or did it emerge afterwards?
What kind of treatment are you trying to relief the pain?

best, Mette

Mette

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Re: Do we belong?

Post  Sarah001 on Sun Sep 18, 2011 7:51 pm

Hi Cait, my first thought was would anything we discuss here be relevant to you then I realised of course it would, some ladies here have pain provoked by surgery and therefore possibly nerve damage or scar tissue etc. Then there's the pelvic floor, surgery in the genital region could quite easily set off pelvic floor dysfunction in women born with vulvas and women who weren't. Then of course hormones, or spinal issues or hip problems etc etc so I don't see any reason why this forum wouldn't be a suitable place for you ladies. I'm sure the majority of women on here will agree with me and Sebby is our founder and leader but a bit under the weather right now or I'm certain she'd be welcoming you the same as she does everyone. So welcome to the forum and feel free to discuss anything with us.
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Re: Do we belong?

Post  Cait on Mon Sep 19, 2011 6:59 am

Thank you for your replies; I understand that my question was probably a little awkward and unexpected.
A little history wouldn't go amiss:
I had GRS (Genital Reconstructive Surgery) in November last year, to create a functioning vagina and vulva. I had problems after surgery with clitoral sensitivity, which meant that I couldn't walk without a lot of pain, even though everything appeared to be well healed. I also had pressure pain on the bottom of my outer labia which made having penetrative sex really sore and made wearing certain kinds of underwear totally out of the question.
The clitoral situation has vastly improved, though I still get the odd twinge now and again for no apparent reason.
The labial pain, while better, is still there and continues to cause problems during sex, though I can mentally master the pain sometimes. If I wear bikini-styled underwear, it starts to become uncomfortable after a couple of hours.
Then of course there is the regular dilation I have to do to keep my vaginal cavity from closing, which really doesn't bear mentioning, since that's often one big uncomfortable pain-fest.
So that's my story.
I'm hoping that it all just goes away with time. It's been nine months now and I hope it doesn't end up lasting a lifetime.

Cait

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Re: Do we belong?

Post  Sarah001 on Mon Sep 19, 2011 5:28 pm

I can't help but think there's going to be trigger points and restrictions in your pelvic floor, it must have been heavily involved in the surgery and quite possibly reducing blood flow to the area. Have you tried skin rolling the labia? It can help remove stuck fascia, trigger points and help reduce sensitivity to touch, it's always recommended for anyone with scarring in the area so it might help.
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Re: Do we belong?

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