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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


I am so glad I have found this site :)

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I am so glad I have found this site :)

Post  miss.panda on Sun Oct 04, 2015 8:14 pm

Hi everyone,

I'm 25 years old and I have suffered from vulvodynia for as long as I can remember. I spent most of my teen years being told I had some sort of eczema/skin problems down there - I tried all the creams out there which would never work and doctors would never believe me that I hadn't tried to use them as I still felt pain down there after. I felt really embarrased and hurt by this so I stopped seeking help for a while. Eventually I decided to go back to my doctor where I was sent to a different hospital and I was evetually diagnosed with vulvadynia a few years ago. Everything fell into place and made sense which was such a relief - but I have unsuccessfully had any improvements since then. I've tried various meds including amitriptiline and gabepentin which didn't work - however I sometimes wonder if I didn't use them for long enough which is why they never worked. I'm currently seeing a psychologist/counsellor who has told me the pain will never go away and that I need to learn to live with it - do you ladies on here agree with that? Should I give up on trying to find something that will work? Or should I keep trying to find new things? Vulvadynia effects my life greatly - I've only ever had one boyfriend and sex was usually painful and since then I have totally avoided relationships despite really wanting a boyfriend as I just can't deal with the sex side to it.

Any advice would be much appreciated and I am so glad I have found this site where there are lots of others who also share my pain - I look forward to talking to you Smile

Thanks
x

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Re: I am so glad I have found this site :)

Post  Guest on Sun Oct 04, 2015 10:27 pm

Hello lils.panda:) I really don't want to believe your doctor, I think we will all get better if we believe. So I think you should keep trying. By the way, how long did you use Gabapentin?

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Re: I am so glad I have found this site :)

Post  sailor_moon on Mon Oct 05, 2015 10:38 am

Hi there,

That's terrible being told you will be stuck with this forever and to deal with it. Sad
I have been told that many times too...but I refuse to believe it, and my current doctor doesn't think I will be stuck with this forever, it's just trying to find a solution that's hard.

Have you had your hormones and PH checked over a 4 week cycle? Have you had a biopsy done? And regular swab tests? Have you been food and chemical allergy tested? Do you have any other health issues?

Sounds like you need to find a new doctor and different form of psychological support. All the ladies on here are very lovely and helpful Smile



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Re: I am so glad I have found this site :)

Post  miss.panda on Mon Oct 05, 2015 1:51 pm

Thanks for your replies door12 and sailor_moon Smile

I'm so glad you have both said that I shouldn't just accept my problem and not keep trying. Reading other posts on here has given me hope that there are other things I can try.

Door12: tbh I can't remember how long I used gabapentin for.....maybe for a few months? Is this something that you have tried that has been successful?

Sailor_moon: I've never had my hormones and PH checked - could this be something that effects it? I used to suffer from vulvodynia before I started periods so that could rule that possibility out? I have had a biopsy done and it didn't come back showing anything. I think I've had swab tests in the past but not regularly or recently. I have been allergy tested and it showed nothing. I suffer from various mental health issues (depression and an eating disorder) and I also suffer from IBS and eczema. Whats your story - what stage are you currently at?

Thanks both Smile
x


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Re: I am so glad I have found this site :)

Post  Guest on Mon Oct 05, 2015 2:37 pm

Oh hi again:) No the reason I asked is because I'm on Lyrica now and it's been 2 months and people say that pregabalin and gabapentin takes a few months to be effective. I'm a little discouraged to be honest learning that it hasn't helped you..

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Re: I am so glad I have found this site :)

Post  miss.panda on Mon Oct 05, 2015 2:48 pm

It was a good few years ago I tried gabapentin and I don't remember much about it but I think I was only on a low dose - I am thinking about asking my doctor to try it again and go on a higher dose or maybe try Lyrica as I hadn't heard of that until coming on here. I just want to find something that work Crying or Very sad have you tried anything else other than Lyrica? Thanks for replying Smile

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Re: I am so glad I have found this site :)

Post  x_chelss@live.com on Sat Oct 10, 2015 6:10 pm

I just replied to your private message, but don't ever give up on trying to get better. You should never learn or accept a life living in pain. Most girls do get better so you need to believe you will be one of those girls.
Look forward to your reply xx

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Re: I am so glad I have found this site :)

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