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» Vestibulectomy
Yesterday at 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

» 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


Lost and depressed

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Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 1:24 pm

I have completely reached the end of my tether with this...

Four years ago, I was given a bath bomb. I had a really lovely bath, which turned bright blue with all the dye in the bath bomb. The next day, my bf and I were n bed, and it was like being with a cheese grater. Of course, I thought it was thrush, I tried the creams, they didn't work, went to the Dr, they gave me more creams and pills, went back to the Dr was given more thrush treatment... 6 months later they spiced things up with eumovate (steroid) cream, then they went back to the thrush treatments. After a year, I was referred to the vulva clinic, after 15 months, I finally saw a specialist an was diagnosed with vulvodynia. The Dr told me that on average it lasts 18 months, an I though 'great, only 3 more months of this hell'.

My first appt with the vulva clinic, I left with emulsifying ointment, anti-depressants, anaesthetic, instructions to cut out just about everything, and a whole lot of leaflets, and I was pretty happy that it would be over soon. I was referred to a physiotherapist to teach me pelvic floor exercises, an given cones to help stretch my muscles. Nothing helped.

I saw that specialist for 2 years before I moved to a new city 300 miles away and was referred to a new gynaecologist. This came with a whole new set of tests. I was told I had thrush again, I had swabs taken, and I was told that I had a collection of lumps around the vestibule which she thought were warts. Of course, I'm sure most of you have jumped on any new possibility that it might not actually be vulvodynia - I went to the sexual health clinic for tests, knowing that if I tested positive for anything, it would mean my boyfriend had cheated on me, but at least I'd be clear of this hell. It wasn't warts. It also wasn't thrush.

Six months ago, I thought perhaps it was a hormone defficiency, so I started to take herbal supplements for menopause (I'm 24), and waited until I went back to the gynaecologist. The gynaecologist decided to try me on estrogen supplements, which were horrible - I took them for a month and nothing helped, but coming off it again, I started to feel really depressed and tearful.

Five months ago, I decided it was an allergy to sulfates, and cut out everything that contained even a hint of them.

About 4 months ago I returned to the gynaecologist, and she said we had two options -steroid cream and come back in 3 months for a biopsy if that didn't work, or just go for the biopsy. I decided I had had enough and opted for the biopsy. I hadn't realised it would be a deep tissue biopsy, so I had only arranged to leave work for an hour, and had to go back afterwards (ouch!) but I didn't mind because it was finally going to give me some answers! Three months ago, I got the answer - contact allergic dermatitis!

I was so pleased I had an answer - there it was, finally, in black and white, it's not vulvodynia! There's a cure! I was so relieved, but I was trying so hard not to get my hopes up. I applied the cream every day for 2 weeks, then stopped for a week, applied it again for another 10 days before I got concerned it was causing everything else to feel swollen. I switched to a non-steroidal herbal equivallent, used that for 3 weeks, but that hasn't worked either.

I stopped using it 2 weeks ago now, and just feel really helpless. I finally had an answer and a way forward, but now it's back to this in-explainable pain, and I have no idea where to go next. The only light on my horizon is an allergy test next month, but I've stopped using everything I can possibly think of, and I'm just back in this horrible situation again.

I'm still with my boyfriend, and we've been together for nearly 4.5 years, but we haven't been together for 4 years now. I'm 25 in 6 weeks, and I'm starting to reach the age where I'm thinking about the possibility of getting married, having kids down the line, but I just don't know how I'm supposed to be able to do that! I can't get married because I can't consummate it, and I definitely can't have kids. Although I love my boyfriend, this is not fair for him - he's young, and should be able to enjoy his life, and I can't escape that horrible feeling like I'm just holding him back, and he's only here out of obligation. I can't speak to anyone about it, because it's impossible. I told my closest friends about this problem 2 years ago, but they haven't mentioned it since, and I think they have assumed it's all better now, because why wouldn't it be.

My current job has me 300 miles away from home, and I've been so lonely, that when I came off estrogen, it threw me into depression. I started to get out from under my cloud, but the failure of this latest cure just has me spiraling back down to my lowest ebb, and I have no one to help support me through it - even my boyfriend is 300 miles away. All I want to do is cry, I haven't got a clue how to go forward, and I'm just drowning in it all.

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Re: Lost and depressed

Post  Sarah001 on Sat Jul 20, 2013 5:24 pm

If it is contact dermatitis have you tried any anti-histamines? I would have thought if it was allergy based that would be the place to start if you haven't already, I'm not sure which one would be the best for it as they all work better for different problems but it might be worth a try? There are also anti-histamine creams but I think I'd start with tablets. Also I think I would look up all the ingredients in a bath bomb if that started it and see where else these things could be, it might lead nowhere but it's something I would do just in case. When I went to a GU clinic to get checked out the dotor there was telling me about a lady who had contact dermatitis behind her V and they just couldn't figure out why because she'd stopped using soaps etc and finally it emerged her husband was reading a newspaper before going to bed then he'd touch her and she was allergic to the newspaper print so it could be any number of things causing your symptoms. If you haven't tried anti-histamines though I would at least give that a shot.
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Re: Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 6:52 pm

Sarah, thanks for the suggestion, that is an unusual but good idea. It's definitely not newspaper ink, but over 4 years, I can't think of anything I haven't stopped using for at least a little while... I wondered if there was a chance it's something I'm eating as well. But also can't help but shake that feeling that, while the biopsy found a problem, maybe there is more than one.


I meant to say in my post -I'm sorry for the incredible length, I'm so frustrated it kind of ran away with me! My one bit of advice for others would be to ask their gynaecologist whether they think a biopsy is something they will be offered eventually. Despite the pain and intrusiveness, I wish I had had mine 3 years ago - it would have saved me so much time, money, energy and tears chasing false possibilities.

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Re: Lost and depressed

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