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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


6 years of "it's in your head"

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6 years of "it's in your head"

Post  thanatologist on Thu Jan 09, 2014 5:03 pm

Hi all!

I have been dealing with this issue for 6 years. I would go to planned parenthood and I would tell them sex was basically impossible, and they told me it was a lube problem. It was not a lube problem and I told them for 6 freaking years that was not the case.
I recently moved out of town and into a small college town where I am an undergraduate. I made an appointment with the school nurse and FINALLY on Monday, she confirmed I have vulvodynia and I was so relieved. (well, to know it wasn't just in my head!)
I have felt so alone and so crappy. I have a fiancee and we have been engaged for 2 years and together for 4. I have sex maybe once every few months with him. He is patient, loving, and caring, but I feel like an absolute failure and often wonder why he even stays with me because I am defective.
I started a regime of 2% lidocaine jelly and 10 mg of Nortriptyline. Has anyone else tried this combination? So far, that pill just knocks me out about 5 minutes after I take it.
Thank you for the support. This being such an unknown area in the medical world definitely sucks.


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Re: 6 years of "it's in your head"

Post  mary jane on Fri Jan 10, 2014 6:39 pm

hello.
it's rather infuriating to have doctors NOT listen to you and label you as "psychosomatic" (right, because chronic pain is impossible)
the amitriptyline/nortiptyline and lidocaine combo is standard therapy for vulvodynia....
I know what you mean by painful intercourse, but there is no reason to feel there is something wrong with you sexually... you have a medical condition, that is something different. If he does not understand, his problem... similarly you could have underwent surgery to leave you unable to have intercourse from the pain! these things happen unfortunately....

amitriptyline helps me, but I have pure nerve pain.... if you find the nortiptyline does not help you (you have to WAIT for it to build up in your system, it took me 2 months to get pain relief), then switch to something else....

if you are in the US, dr Fred Howard in Rochester is VERY good: https://www.urmc.rochester.edu/people/21596933-fred-m-howard
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Vulvodynia sucks, doesn't it?

Post  Fingerscrossed on Fri Jan 10, 2014 10:02 pm

I had very similar situation to you, which is a bit eerie. I went to Planned Parenthood from the time I was 18-23 (moving to Kentucky for graduate school when none were available), and could not understand why getting a pelvic exam hurt so badly. They suggested that I was unable to relax, had me do STD tests (came back negative), and had me switch pills. I went to my undergrad health center where they suggested it might be vulvodynia, but really couldn't do anything about it. They suggested I dilate and use lidocaine, but it didn't help and only made me more upset.

I finally sought help last March after dealing with this issue for six years and was officially diagnosed with provoked vulvodynia and pelvic floor dysfunction by Dr. Robert McQuady at the Pelvic Pain Regional Specialty Center in Louisville, KY. I've been on amitriptline since that time, lidocaine as needed, and also baclofen, which is a muscle relaxer. I don't know if they've actually been working or not. I tried using Lyrica, but couldn't stand the symptoms. It made me so drowsy that I nearly fell asleep driving to my appointments and in classes. My doctor is two hours away (three with a time change), so I could not do weekly physical therapy sessions until I finished my semester classes in May. I did therapy on a weekly basis from May-August and had some improvement with the pelvic floor dysfunction, but nothing with the vulvodynia. So, I underwent a vestibulectomy on December 17, 2013 and am currently still going through recovery. I just had a checkup yesterday and he said everything looks good, but I haven't been able to test out my new parts since it's only been three weeks.

Throughout this time, I have been with a wonderful man. We've been together for six years now--1 1/2 years dating, 3 1/2 years engaged, and one year married. He and I lost our virginity to one another and for a time, I was able to have pain free sex, though it took many attempts over different dates for him to be able to actually penetrate me in the first place. I've never been able to use tampons or have pain free pelvic exams. My husband does get frustrated sometimes and we essentially are in a sexless marriage because it is painful for me, but he understands and wants what is best for me. However, I hope that the vestibulectomy will work as it is supposed to it and one of my barriers to a pain free sex life will be gone. Once I get the okay, I will be continuing physical therapy and maybe the pelvic floor dysfunction will go away.


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Re: 6 years of "it's in your head"

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