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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 to forum but not new to vulvodynia

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New to forum but not new to vulvodynia

Post  Nelliewelly on Thu Aug 14, 2014 2:31 pm

New to forum. Based in UK (south east). Just come from another gynae appointment- you have to laugh or you'd cry. Gynae suggested injections to turn off ovaries then hysterectomy. I am 40 and had 2 major vulvodynia flares lasting months-years since I was 20. This is third flare caused by a dreadful routine cervical smear by professional nurse (?!?!) in December 2013. I try to stay positive, don't we all? But, get fed up with lack of support/advice. I would like to hear from anyone in UK who sees a specialist - i can only only find Dr Wendy Reid but there must be more than one. I think I need to take control of this as am slipping into depression and I need to find a way to deal with this. The previous occasions I had these symptoms I was told I had thrush (yeast) and uti and took tablets and thrush treatment and eventually it went away - frustrating as I never tested positive for thrush and am sure those creams did more harm than good. I believe I had vulvodynia then but this was never diagnosed. I think there are so many things to try that I need to be more proactive and research more than I have done. Just wanted to post here as I read forum all time and am hopeful that we can all find some respite from vulvodynia. I believe there are lots of triggers and lots of treatments but 'one size' does not fit all. Anyway, just wanted to finally post a 'post'. H xx

Nelliewelly

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Re: New to forum but not new to vulvodynia

Post  Alana3 on Thu Aug 14, 2014 3:41 pm

what in the world would that do?  Great treatment for endometriosis but certainly not for vulvodynia.  Do not go thru that.

Alana3

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Re: New to forum but not new to vulvodynia

Post  Nelliewelly on Thu Aug 14, 2014 6:21 pm

Thanks for reply. I won't be turning my ovaries off any time soon. Googled all his advice/medications when I got home and thought this is JUST WRONG. I am however now determined to find a decent specialist who is not so dramatic with diagnosis. I was so shocked he suggested it that I didn't ask what effect it would have ... He gave a big old smile and ushered me out of office!! I laughed all way to car park.. and also ran a little a bit as was slightly panicked!! I think he thought it might be hormonal so I would think blood tests first.... I might add he did not examine me or seek any detailed information about my symptoms. Scary and funny at same time. H x

Nelliewelly

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Re: New to forum but not new to vulvodynia

Post  Alana3 on Thu Aug 14, 2014 8:27 pm

That's horrifying! I'm glad your smart enough to not do that as it is a very VERY wrong diagnosis!  Find a specialist and I think it'll help you loads Smile hope you're feeling OK today!!!

Alana3

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GUM Clinic

Post  bearferret on Tue Aug 19, 2014 5:35 pm

I know it may not work for everyone but I went to the GUM clinic, really embarrasing, but wow was the doctor understanding. Amitryptilin in v low dose for three months and I'm all better, well almost not quite the same sensation down there, but no pain.

Have you tried Amitryptilin? It an anti depressant that you take in a much smaller dose and it retrains the nerves. Worked wonders for me, but the I have a new boyfriend who has been great and understanding so some of it could be his help.

bearferret

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Re: New to forum but not new to vulvodynia

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