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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

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New member

Post  meghan on Wed Jun 15, 2011 3:14 pm

Hi everyone I am newly diagnosed with vulvodynia even though I have been experiencing symptoms on and off for three years. Does anyone have any suggestions for finding a good Dr? I live in California.

meghan

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Re: New member

Post  noni on Wed Jun 15, 2011 10:50 pm

You have a few options:

1. Get referred to a Pain Clinic
2. Get referred to a Vulvar Clinic (usually headed by a Dermatologist)
3. Look into physio for Pelvic Pain

Your already past all the horrible stuff! Being diagnosed starts you on the road to recovery...its a long process but you just need to find what will give you relief

PS: Try meditation? Accupuncture???

I dunno...anyways take care!

Oh and welcome Smile
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doctors in CA

Post  annaCA on Wed Jun 22, 2011 5:12 am

I was having trouble also finding a doctor in California. I subscribed to nva.org and within 48 hours they emailed a list of doctors in my area and told me their specialty (pelvic pain specialist, physical therapy, holistic medicine, urology, etc.) and how many patients they see with vulvodynia per month. It helped me a lot and was worth $45 to have all the information. I picked the doctor with the most experience.

I hope you find a specialist! I was lost without one and my mom finally convinced me it was worth the money. I wish more OBGYN knew about the condition since I believe it is more wide spread than anyone thinks.

annaCA

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Re:new member

Post  ria on Wed Jun 22, 2011 4:22 pm



Hi Meghan,

So much information on here from the Ladies, I hope you find a good consultant. Sorry I cant help I live in the UK.

Take care

Ria
Very Happy Very Happy Very Happy Very Happy

ria

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Re: New member

Post  Sebby (Admin) on Fri Jun 24, 2011 5:38 pm


Welcome to the forum Meghan

joining the NVA (National Vulvodynia Associationn is a good tip for our USA members


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Re: New member

Post  jules on Sat Jun 25, 2011 12:58 am

Welcome! Another option for you is to go on Facebook (it is public) and look up Vulvodynia group. There are over 500 members. you can tell them you're looking for a specialist in CA and see if anyone knows of one. I live in MN. too far for you. :-) i was given a list of 6 doctors in Mn from the NVA (after paying 45.00). I picked one closest to my home. i was not impressed w/ her. you can also ask your doctor to refer you to a pain clinic. The pain docs know how to treat nerve disorders w/ meds. nerve blocks etc. I went to 7 doctors before i landed at the pain clinic. the pain docs have helped me the most.

jules

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