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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» 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

» 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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


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

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

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

At war with my own body

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At war with my own body

Post  DreamingClouds on Fri Oct 17, 2014 8:06 am

Hi all,
 As you can see I'm a new member. I found this forum looking up support groups and thought it might help to talk to people who get it where nobody I know might see. I'd been comparatively pain free for a while but it has flared up again and I can already feel myself sinking out of the little bit of positive I had built up. Sad

I first started getting a bit of the pain when I was 16, didn't really register what it was and I was treated for UTIs a few times. It kept coming back more and more often and by the time I was 18 I had a spot just under my vaginal opening which is absolute agony to touch. It's only fairly small, and sometimes it is only sore on contact (I think it's more I'm used to it than it isn't hurting at all), but other times the pain is unbearable agony that makes going to the bathroom, sitting, lying, walking, anything just sheer agony. I went through a year of different GP tests (UTI, yeast, STI etc, the anti fungal cream left me screaming) before being referred to a gyno. The first one was pretty awful and used a larger sized speculum despite me being in pain and a virgin (to "prove" I wasn't tight) and was generally not very sympathetic, all I got out of that was a confirmed PCOS scan and diagnosis and some not overly nice comments about how obvious it was I had it from my appearance. I didn't really want to go back after that but eventually saw another lady who had no clue, then finally after a lot of fighting saw somebody else. I was tried on tablets to try and block the pain signals (gab something and amitryptiline (sp)), birth control, steroid cream and topical lidocane, none of which helped, and to sum it up was eventually told I needed to exercise more to lose weight (i'm hardly large and even walking is agony) and that they didn't know how to help me. They also said I wasn't a typical case since the pain is permanently there on touch then flares up as generalised. :/

I'm now 21 and since then I haven't seen anyone. Being poked and prodded and given tablets that mess with my depression just makes me feel worse mentally and it takes weeks to see a normal doctor let alone get a referral so I have been trying to cope. That had been going better, car journeys in particular cause flareups but as long as I don't overdo movement and am careful I get bigger breaks than I would otherwise. I'm single now anyway but since this flareup started it's really hit me, I don't even dare try to date anyone and how much it hampers me has all come back. I don't really have a social life because I struggle to go out and fear it starting up when I do and my family that do know are the "just get on with it" brigade as though I can help being in agony or how bad it makes me feel. Being in so much pain its driven me to becoming suicidal in the past is bad enough. I just feel really crappy and need to be saying this to people who don't think I'm mad or judge me. Sad

EDIT: I should probably say what methods I am using. I'm only using 100% natural (mostly homemade) shampoo, soap, everything now. No SLS or anything else that may remotely irritate. Cotton underwear, doughnut cushion (makes it worse sadly). Healthy natural diet, vegan. Baths with oats when it flares up help a bit sometimes. Painkillers never made the slightest difference and I try to avoid that stuff anyway. Cool water rinse when urinating during flareups. Lots of water daily, no citrus anything. I think that is everything, not slept all night so my brain is kinda fried.


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Re: At war with my own body

Post  Sparkle on Fri Oct 17, 2014 11:55 am

Hello dreaming clouds,

Do you only get pain in one spot when touched or is it Ther all time aswell? Or a mixture on different days?

I get provoked pain but I can get an ache and pain all day if I wear too tight trousers or Ther is too much pressure (down Ther) im newly diagnosed but I will say since being diagnosed my symptoms have reduced with the methods I am using.
I use an organic vitamin e oil everyday and night on the area that gives me pain, I use lidocaine in eve after a bath. In the bath I am only using aqueous creme and vani soap to wash. And I wash my hair over bath not when I'm In Ther. I'm also taking vitamins, fish oil, magnesium and calcium citrate. I only wear leggings to work and at home a lose pair of shorts and no knickers. I wash my knickers seperatly and use non bio washing tabs and no softener. Since starting to do all this about 3 weeks ago my pain has reduced. It's not gone away though but I can feel it's getting better each day. Maybe you should (if u aren't already) use my methods and see if they work for u? I know everyone is different so I don't wanna get your hopes up but I got my ideas from different girls on this site. U just gotta find out what works for u.

I'm sorry you've had such rubbish doctors and feel like u don't want to see anyone else now and are feeling low at this point. It does help to talk to women on here who going through same or similar thing.
I would go back to your GP and ask to be refered to a vulva specialist or a gynocolagiest. I know waiting times can be long but best to get on the list as soon as u can. Not all doctors will brush u off u gotta keep trying different ones till u find one who listens. My gyno is nice she wants me to go on ami beg of nov so depending on how my symptoms are then I hope to start on a low dose. How did u get on with ami?

I hope you find your solution soon x


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Re: At war with my own body

Post  Sparkle on Fri Oct 17, 2014 12:00 pm

Also you need to try and work out why u get flare ups, that's a good step towards finding out what will help reduce your pain. Stress at work? Clothes u wear? Change in washing powder? It could be anything. Somthing has cause this flare up for u this time. My last bad flare up I worked out was stupid jeans I wore to work. Too tight! I was in pain all day and eve and next day. I thrown them away now lol and just wear leggings at work.


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Re: At war with my own body

Post  zarli on Sun Oct 19, 2014 1:06 am

Hi sweetie
I feel you need to make contact with Alana. She is one of the lovely girls on here and she would have great advice for you as I think by reading your story surgery would be something to think about. I believe yours can and will be fixed by going down the right road.
Kindest thoughts sent your way Smile


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Re: At war with my own body

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