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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


New Member Here - I have VVS

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New Member Here - I have VVS

Post  srslyskwrrly on Fri Mar 27, 2015 1:59 am

Hey everyone,

I am so glad to find a supportive online forum for those of us with Vulvodynia! I was diagnosed with Vulvar Vestibulitis about 14 years ago and back then there just wasn't much information to be found about Vulvodynia issues. Today I am glad to see more medical research is being devoted to it and far more information is available online. Moreover, it is a comfort to now be able to access forums like this and see how we are absolutely not alone in our experiences. It's also fascinating to see how varying and personal the experiences are from person to person.

Anyway, as I mentioned above, I have lived with a diagnosis of VVS for 14 years (since i became sexually active) and I believe I have had it my whole life - likely from being born with neuronal proliferation (NP) or physical trauma suffered during an exploratory medical procedure at age 4 where doctors were attempting to figure out why I had chronic UTIs at the time. I will spare a super-long narrative about my experience here, but in short, it was a rough, confusing and humiliating road to diagnosis and eventually successful treatment (as I am sure it is/was for many women), but I ultimately found that, for me, taking 75 mg a day of the anti-depressant Desipramine is what has worked to take a big edge off the pain for these past many years. While I absolutely recommend people explore Desipramine as an option, I must advise (as I'm sure many of you already know) that anti-depressants don't always work for everyone and Desipramine comes with its own set of delightful side effects, with the most common and annoying being constipation and dry mouth. My other go-to is to always have lubricant readily available during sex. Of course, that is something people have to explore to find what brand or formula works for them, but I am happy to provide a recommendation for anyone who asks.

I have joined this forum today because, for a number of personal reasons, I am currently weaning myself off Desipramine and will need to find alternatives to manage the pain. I have explored the forum a bit and found some interesting leads that I will definitely follow up on. I look forward to finding more information and also to being available to offer up advice or support to anyone who asks for it.

Wishing everyone here the best on your journeys,

Srslyskwrrly

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srslyskwrrly

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Join date : 2015-03-26
Age : 33
Location : CT

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