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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


Can anyone else not have sex AT ALL?

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Can anyone else not have sex AT ALL?

Post  searchingforacure_ on Sat Apr 29, 2017 7:04 pm

Hello,

I have struggled since I was 15/16 with vulvodynia and it was always annoying, but it never prevented me from having sex until about a year ago when I had a serious flare up. Since then, I haven't been able to have any sexual activity at all....if anyone else has gone through this, how did you cope? Were you able to find a partner still? I feel so hopeless...

searchingforacure_

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:00 am

I don't wish to dishearten you, but I am no longer able to have sex. Maybe someone else has found a way around the pain and can offer some useful advice.
I had to have a cervical smear earlier this year and I was crying out in agony.
I was given these things to try, they are like plastic penis' in varying widths, the first being about the size of a finger, progressively getting bigger, until "normal" penis width. You're supposed to lubricate them and gently insert them into yourself when you are relaxed and comfortable, so that you break away from that initial "freeze"\frightened of the pain response.
The theory sounds good, but I'm to afraid to try.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:45 am

My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  chancesunny on Thu May 04, 2017 9:18 pm

Physical therapy is key!!! I had pain during sex for 3 years and I also felt hopeless. After literally years of research and trying every kind of medication, I found a physical therapist who specialized in relaxing muscles by applying pressure with her fingers to my pelvis area. She also trained me on how to release my pelvic muscles which was exactly what helped me with my vaginal pain. The sad thing is that a lot of women don't like to have anyone touch them in the way that they need to get better. It is extremely painful in the beginning but it is so eye opening. I completely recommend physical therapy to anyone having painful sex. I used to not even be able to put a tampon in and now I'm having painless and wonderful sex. I do still have some pain time to time but I know what to do to release those muscles and calm myself down. I hold all of my stress in my gut so that's why the pain came on - I was going through a very stressful time at work. Good luck!

chancesunny

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I can't

Post  Gill on Sat May 06, 2017 7:56 pm

I can't have sex.

There are two main things I do to tackle it:

- My husband and I went to a great psychosexual counsellor who talked about 'other things' we could do in the bedroom, and that helped a lot. We've been together for 3 years since finding out.

- I keep on researching and going to Drs and reading forums etc. I had some improvement from PT, enough to be able to put in a tampon. Had partial vestibulectomy a few months ago (mine is provoked and localised, so am an excellent candidate), and had further improvement, but still not enough for sex. I'm not giving up hope yet; dr says it might get better with more healing. Otherwise hope to push for more surgery.

Gill

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Big fat nope to sex

Post  KaseyT85 on Wed Jun 07, 2017 1:52 pm

I used to be able to have sex, but now it is just too painful.
I am about to commence using the dilators for physical therapy to try and retrain the muscles.
Also, I have been diagnosed with a dermatitis in addition to the vulvodynia so I am using steroids, soap free aqueous cream in the shower and barrier cream.
I am hoping to see results over the next couple of months.

I would suggest trying to obtain a referral to a vulval clinic for them to review what might work for you.

It is a terrible condition, I wouldn't wish it on anyone. Not only physically, but mentally as well.

Best of luck Smile

KaseyT85

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Re: Can anyone else not have sex AT ALL?

Post  mary jane on Wed Jun 07, 2017 2:31 pm

Dora The Explorer wrote:My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

the ithcing sounds like neuropathic itch. Have you ever taken medication for this? They used to treat this condition with alchohol nerve killing injections

here is the link:

http://www.atlasofpelvicsurgery.com/1VulvaandIntroitus/9alcoholinjection/chap1sec9.html

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Re: Can anyone else not have sex AT ALL?

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