Log in

I forgot my password

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 Here

View previous topic View next topic Go down

New Member Here

Post  Shortbird on Thu Sep 15, 2011 8:39 pm

Hello everyone,

Finally after about 15 years of suffering from this condition I have found a support forum. Very Happy

As far as my story goes when I suffered the symptoms of the condition it didn't even have a name and the doctors knew nothing about it, hence I had years and years of tests, swabs, you name it, I went round thinking I must have the most horrendous infection.

I have to say for much of those years it was something that I put up with and learned to live with because nobody knew about it back then but not now, after a few bad attacks I decided enough was enough and having read the book by Howard I Glazier I realized that I need to be relentless in my quest for finding relief from the acute, burning and raw pain I feel and I also had the realization that I was not alone. I am having a particularly bad attack at the moment and feel drugged up to the eyeballs and a bit depressed as the pain is relentless which is why it's nice to actually write it down here.

I have since had a skin biopsy which was the most painful thing I have been through and completely knocked me off my feet for a wee quite literally but I needed to do that for me to be referred to a specialist.

I have been on various drugs and at the moment have just started a course of Pregabalin (75mg), strangely enough this has coincided with this very bad attack and I ended up at the doctors in tears because sometimes I just don't feel I can function day to day with the pain and now the drugs I'm taking. The doctor has prescribed me a mixture of Ibuprofen and Cocodamal to try and ease the pain, she is also going to talk to my specialist about a pain clinic and pelvic exercise, I may even increase the dose of Pregabalin.

So I continue on my road to try and find some relief from this condition, I just want to add that most of the time I just feel a mild burning but this attack has made me remember how bad this condition can get at times, I guess the other frustrating thing is that I don't know what has caused it.

Anyway just wanted to tell you a bit about my story and I'm looking forward having a look around the site getting and hopefully giving some helpful advise.

SB

Shortbird

Posts : 5
Join date : 2011-09-15

View user profile

Back to top Go down

Re: New Member Here

Post  Sarah001 on Fri Sep 16, 2011 11:47 am

Hi and welcome, you're in good company here! I notice you don't mention having your pelvic floor checked out so that's a good thing to do next, in my opinion it's something every woman with V should have done. High resting tones and clenching the muscles through the day are things we V sufferers often find.

I'm on Pregabalin and I know a few others here are too, I'm finding it helps a bit for a while then stops working and I need to up the dose then it does the same thing again and stops after a period of time so I'm not convinced it's going to be the answer for me. I'm also on Ami which didn't help much at all and I stopped the dose increases at 50mg because I was sure it would be pointless to keep adding more. I have seen a few women online say Pregabalin made their V worse while they were on it but I don't know why so if it doesn't calm down it might be an idea to swap it for something else.

Anyway, have a look around and feel free to chat to us about anything.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: New Member Here

Post  Shortbird on Fri Sep 16, 2011 5:39 pm

Thanks Sarah, so nice to know there is somewhere to come for support and I actually feel much better today

Shortbird

Posts : 5
Join date : 2011-09-15

View user profile

Back to top Go down

Re: New Member Here

Post  Aussie on Thu Sep 22, 2011 3:12 am

Is Pregab Lyrica? If so Lyrica made me flare like crazy. (bladder and v) the week after I got off it pain shot down a few pegs, I now take no medication for v, I hated that drugged feeling and it was doing nothing for me for the pain.

Claire

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

View user profile

Back to top Go down

Re: New Member Here

Post  Shortbird on Fri Sep 23, 2011 8:25 pm

Hi Aussie,

Funny you should mention that because my pain has been really bad since I have been on Pregablin, wonder if I should stop taking it or at least maybe call the specialist on Monday Crying or Very sad

Shortbird

Posts : 5
Join date : 2011-09-15

View user profile

Back to top Go down

Re: New Member Here

Post  Aussie on Mon Sep 26, 2011 1:56 am

I weaned off over a week. My Neurologist said that Lyrica would make my bladder symptoms worse but eveyone eles said the opposite. I wish I had listened to him in the first place....

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

View user profile

Back to top Go down

Re: New Member Here

Post  Shortbird on Mon Sep 26, 2011 2:29 pm

Hi,

I am waiting for my specialist to call me back today (still waiting)...I need to talk to her about this and also if she can put me forward for the pain clinic and also the pelvic floor, I have just been thinking that in all this time I have never been referred for any of these.

My pain is slightly better today, I went and bought a water spray for after I have gone to the loo which is lovely, takes the burning off for a while, I also took advise from another poster who said to imagine fresh blood cleansing the nerve endings (sorry can't remember who it was) but it actually does ease things a little.

I am also very nervous as I am going on a date on Saturday for the first time in years, my brain keeps telling me that I must be an idiot for even contemplating this with all my issues but at the same time I don't want to stop living my life, I guess all these things go through your mind which doesn't help if I'm honest. Question

Shortbird

Posts : 5
Join date : 2011-09-15

View user profile

Back to top Go down

Re: New Member Here

Post  Sarah001 on Mon Sep 26, 2011 6:37 pm

Glad to hear the water bottle is helping, just be careful not to overwash the area though, I found rinsing after every pee was too much and made me even more sore so I just rinse after a few now.

As for the date, it's only the first one so no reason to wonder where it's heading, some of the girls on here have started new relationships despite having V but I have to admit I'd be like you and wondering if it was worth the effort. However saying that I don't think all men would run a mile about it (unlike my ex) so it's probably worth at least going on the one date, let us know how you get on! Wink
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: New Member Here

Post  Shortbird on Sun Oct 02, 2011 2:52 pm

Update

Well there is good news and bad news.

The bad news is my date cancelled on me which was a kind of a relief in a way and I noticed that my pain did get better once it was cancelled, maybe there is something in that. Shocked

The good news is I spoke to my specialist who has now written to me and has referred me to the pelvic pain clinic and also for pelvic floor physiotherapy, I spoke to her about my concerns about the Pregabalin but she advised that I need to be on it for at least 6 months, after that she has recommended SSRI Fluoxetine, has anyone tried this and has it improved things.

I actually feel quite positive now that things are finally getting sorted Very Happy

Shortbird

Posts : 5
Join date : 2011-09-15

View user profile

Back to top Go down

Re: New Member Here

Post  Sarah001 on Sun Oct 02, 2011 7:01 pm

You do sound like a clencher if the anxiety about the date was making matters worse! Still at least it's one less thing to have to worry about right now. Good luck with your appointments and let us know how you get on.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: New Member Here

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum