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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Returning Member

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Returning Member

Post  Coop on Sun Aug 28, 2016 10:46 am

Hi all,

I joined this forum a few years ago but left after I found myself getting a little too caught up. I think a lot of us can fall into the trap of seeing others find a cure & then getting hopeful that their cure will be ours but I think I started trying too many things all at the same time. Anyway I have decided to come back , as I think it will help me to talk about how it's making me feel.

I have had vulvodynia for 7 yews now. It has been a long, frustrating journey. There are a few triggers that I think may have started this. I think this started in a very typical fashion, I had a very strongly scented bath one night, and think it caused me to develop thrush. The I visited the dr to get some thrush treatments, they didn't help, I visited the dr again, and have to say I think she was a bit abusive. She was running late, and I was going to be late for work, so I acted a bit annoyed when she called me in: I told her off, so when she did a spectrum exam, she was a bit rough. Now you'll all know that when you have a spetrum exam, the dr is usually quite delicate, but this dr inserted the spectrum, opened it until I gasped, then opened it further. She then proceeded to twist it really agressively, until it brought tears to my eyes. I told her in a pained voice how painful it was, but she continued to twist. It was a horrible experience. Part of me has always wondered if that was the clincher that made me develop full blown vulvodynia...

It took me around a year to be seen by a specialist, she diagnosed vulvodynia and put me on amitriptyline, local anaesthetic, and change to toiletries. I saw her around 3 times before moving for work. When I moved, the new area I lived in didn't have a vulval clinic, so the dr passed me from pillar to post. I sawa gynaecologist, who didn't believe in Vulvodynia. She tried estrogen, thrush treatment. She did a biopsy and diagnosed 'contact allergic dermatitis'. I then asked to see a dermatologist to find out what I was allergic to. The dermatologist scoffed 'a biopsy can say dermatitis, it can't say it's an allergic reaction', but we ran an allergy test and tried steroid creams, but he said the pain I feel could not be dermatitis pain, so he referred me on to a leading specialist in london. She was fab - after 3 years of being passed about, sheconfirmed the original diagnosis, although said it was vestibulodynia. She gave an action plan, putting me back on steroid creams, local anaesthetic, amitripyline, and basically reassured me that we'd find something that could work.

She suggested I see a pain clinic, and that's where I am now. The pain clinic is trying me on some other anti-trycyclic anti-depressants, and also wants me to see a psychiatrist. The theory is that it can help to talk about our pain.

The pain clinic feels the pain might be linked to abuse I suffered as a child - when I was , a girl in our street (around 4-5y.o.) was sexually abusing other kids on the street. My sister came forward about it, and I was there when she met with the social services. When she was telling them about the stuff this girl did to her, I realised she had been doing the same stuff to me, but I hadn't realised it was bad. I don't remember anything she did now, I was too young at the time, but I do remember it happened. The thing is, I know I also made up some of the stuff she did, it was merely saying that some if the worse stuff she had done to my sister, she had also done to me. The best way to describe it is that she was grooming us, and she was just further along the path with my sister.

My parents took us on holiday, and when we came back, this girls parents had told the whole neighbourhood that my sister and I were the abusers, and suddenly we were ostracised. Not long after though, other kids in the street came forward to say this girl had abused them too, but my sister and I still found kids were wondering why 5 minutes earlier, my sister and I were so bad, and those friendships never quite recovered.

I don't think this is the cause, like I say, I don't remember it, but the specialist does want to investigate it with a psychiatrist.

The thing that I find hard is that I'm now at an age where I want to think about kids and marriage, but I can't until I'm better. I can't manage sex at all.... I've been with my OH for 8 years, and we are getting lots of questions about when to expect wedding bells and hints that 'my clock is ticking' (I'm 27!). It just makes me feel awkward having to evade these questions... I'm half tempted to say I can't have kids because of a medical condition, and we're waiting until I'm better before deciding whether yo wed (so I don't tie my OH to a childless future).

Coop

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Re: Returning Member

Post  Coop on Sun Aug 28, 2016 11:00 am

Sorry that did end up being a bit long... I thought it would be good to go into full detail, as my theory is that if it's emotional causes, and I put them out there, it might start my brain healing process...

I should have said my symptoms haven't improved, but I hope that might change!

Coop

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