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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


out of ideas

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out of ideas

Post  cremeans24 on Mon Jun 30, 2014 9:57 pm

Hi there,

I found out while I was pregnant with my son about having vulvodynia. I always had trouble having sex but couldn't ever figure out why and it wasn't and still isn't anything I feel like I can talk to any one about. All I am ever told is that I just have a low pain tolerance and nothing is wrong because all test came back normal. In 2012 I got married to my husband after being together for a year and to this day we still have a little bit of issues because we didn't know what was going on but I didn't like sex at all I mean who would like pain that made you cry and so we were surprised when I got pregnant because we hadn't been really trying and not having regular sex but it was a really happy time for us and my son was born on June 13th of this year he is perfect but now I wonder where we go from here. About half way through my pregnancy we stopped being intimate because it hurt me so bad and I have had a history with depression and boy is it back now. I'm working with my OBGYN once i reach the 6 week mark to see if I can get back to a more normal intimate life with my husband, I guess what I"m trying to find out is did anyone else feel like less than a normal woman or am i just plain crazy. but i feel like I don't know what to do and I know my husband doesn't fully understand what I am going through and I'm just trying to find a way to feel better about myself and have people to talk to that understand and can help me through this time as i have no one in my life i feel i can talk to about this that won't essentially make fun of me.

cremeans24

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 2:47 pm

Did you have your baby yet or are you still pregnant?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 4:41 pm

Yeah my baby was born on june 13th. Overall once i had the epidural the birth was not as bad as the doctors thought but i did tear pretty bad and had to get more meds so i couldn't feel them stitching me back up. I couldn't get out of bed that first 24 hours on my own though they think that was the meds. But i will say the discomfort after birth was pretty bad and is just starting to lessen after two weeks but if i move too much i feel it.

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 4:56 pm

Supposedly after a vaginal birth (and the recovery), your vulvodynia becomes less intense.  Maybe wait and see what happens after?  Where exactly does it hurt? And is it all the time or just upon penetration?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 5:02 pm

Its only ever been during sex, or exams it is why i never really knew there could be something wrong because i had heard that for some women sex was always painful and i never had any abnormal results, utis or infections no stds so i just thought it was normal because no one had answers for me and i had never heard of vulvodynia before

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 5:33 pm

It sounds like you have provoked vulvodynia, like me.  Basically meaning that the only time you have pain is when you have sex.  And only in one spot.  I would go to a specialist and not your obgyn as their primary focus is babies and not really problems.  The good news is you can be fixed but you're going to be doing process of elimination- creams, pills, etc.  I had the surgery back in December 2012 called a vestibulectomy, but this is a last resort surgery and pretty much ONLY for provoked vulvodynia.  But they are going to want to try a less invasive treatment before they come to that.  You can also try women's physical therapy and see if it helps.  Some people claim acupuncture works.  But my best advice is to see a specialist who works closely with vulvodyna.  Where do you live now? 

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 6:29 pm

I live in michigan, and the obgyn only caught it after i went to her for being pregnant so im less than a year into this and couldnt do treatment while i was pregnant so i am just trying to figure this out as i go with help from someone who understands what i feel and i can stop feeling so hopeless

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 7:17 pm

Don't lose hope I suffered for about 7 or 8 years before I got my fix so totally understand.  Maybe try someone at the University of Michigan if you're close or if there's a Cleveland Clinic near by you could try them- I just went to the one down here in Florida for a second opinion on something irrelevant to vulvodynia, and they were great!  Keep in mind that this isn't a disease no one knows about, it's just difficult to find a doctor who's not an idiot.  I would google vulvodynia specialists + Michigan and see what comes up.  I actually did it and I saw there was a vulvodynia clinic! (see below) maybe go that avenue!  Very Happy 


https://www.google.com/?gws_rd=ssl#q=vulvodynia+specialists+%2B+Michigan+

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 9:11 pm

Thank you that helps

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Re: out of ideas

Post  Alana3 on Wed Jul 02, 2014 1:38 pm

No problem- let me know what you decide to do Smile But when you're calling around make sure they put some kind of emphasis on the vulva! I can show you my doctors website so you can get an idea

http://www.jaytrabinmd.com/home.html

Notice how vulvodynia is the first thing you see on the page.  My doc took a special interest in it and he's been my lifesaver!

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