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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


Vulva Specialist Given Up!

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Vulva Specialist Given Up!

Post  Sarah001 on Mon Dec 12, 2011 6:26 pm

As some of you know I've been seeing a Vulval Specialist who is also a Vulval Dermatologist and I've been back today for an update, my medications aren't working well despite being on nearly the full dose of Lyrica and 50 mg of Ami and she's admitted she doesn't think she can help me anymore. Apparently if meds are going to help they normally do so at much lower doses than I'm on and if they don't help she refers people elsewhere. Because I have a joint condition that affects pelvic stability she has decided to send me on to a gynae who has a team of vulval specialist physios working with him. Unfortunately it means I have to travel alot further which will require me to get a lift from someone (don't know who I can talk into that!) and I still have my appointment next week with a WH physio who is a bit closer to home so I'm feeling good in one sense that I'm going to get more help but terrified at the same time that I'm going to prove beyond anyone's scope because of my other problems. I told her I didn't think meds would help me but wanted to give them a try and she basically said she'd never seen a case as severe as mine that was also so resistant to medication which is scary. Fingers crossed someone out there can help me and I'll update when I get my appointment. Feeling a bit scared right now! pale
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Re: Vulva Specialist Given Up!

Post  skippypie23 on Mon Dec 12, 2011 8:03 pm

I'm so sorry Sarah Sad I've had so many doctors just misdiagnose me or say they don't know what I could have and give up, so it's at least a positive thing that you have been able to find some actual specialists.

I was thinking that perhaps medicine may not be the way to go for your body, and that you should look into some possible natural cures along with physiotherapy? I am currently looking into the raw food diet (a little harsh i know) and the yeast diet. It may have to do with your body's acid levels or your reactions to different foods. I'm actually going to try getting a food allergy test to see if I am allergic to yeast or anything else. I don't know if you have already considered these things.

Please don't give up; we shouldn't have to live like this or put up with it at all Razz


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Re: Vulva Specialist Given Up!

Post  lolainslacks on Tue Dec 13, 2011 12:02 am

I'm so sorry Sarah, that must have been such a blow to hear. Do not give up though. Just because this one person doesn't know how else to help you, doesn't mean there isn't anyone who can. I know this may not be a helpful suggestion, but have you tried acupuncture? I haven't yet ztried it but at my last gyn appointment she suggested it as an option. She told me that apparently there are many women who have been completely cured by acupuncture. I know it seems like an impossibility, but it's worth looking into I think. Wishing you all the best.

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diet

Post  Melissa777 on Tue Dec 13, 2011 2:59 am

you know- i think diet elimination is KEY
I tried the yeast diet for a year- did nothing for me

so im starting to think- this isnt yeast related, its pH related. I think the raw food diet makes sense... but its hard- start out slow and do it in baby steps

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Tue Dec 13, 2011 12:26 pm

I came out of the appointment thinking at least I'm being referred on but on the way home started to worry about what if the next person can't help me either? Pain meds were supposed to be a last resort for me that I got talked into trying earlier because of the amount of pain I'm in so it's like I've had the rug pulled out from under me. Some of you members who've been here a while will already know about my other complications and diet isn't going to give me new ligaments so diet just isn't the answer for someone like me, I've already done the low ox diet with no help and the anti inflammation diet too which works on the principle of removing acid from the body and that didn't help either. Mine's definitely musculoskeletal and revolves around the pelvic problems I've had for many years and obviously an unstable pelvis along with a pelvic floor hanging on for dear life is going to be difficult if not impossible to rectify because treatment for one makes the other worse. I'm literally pinning all my hopes on the new physio I'm seeing next week (snow permitting) which means if she sends me on my way I'm going to be devastated. I'm sure my resting tone is up again because I've had the worst year of my life and so much stress I'm surprised I'm still ploughing on every day. It's a very worrying time and I can feel depression lurking over me.
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Re: Vulva Specialist Given Up!

Post  naomi on Tue Dec 13, 2011 5:47 pm

sod that sarah! theres no way we can give up now...we've come too far!!

I know its a blow when they pass you on to a new specialist. I think after my 10th I was thinking "shite!" but if I dont keep plodding onto the next then theres just no point in fight it and trying to get better.

have u spoken to alana (not sure what alanas nickname is on here, or if she is still on here re: ketamine. she uses this orally (i think) and has given her so many more days of less pain. She said its not the answer but is helping so much with pain relief.

hope ur ok chick! xxxxxx

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Fri Dec 16, 2011 5:47 pm

I'm crossing everything the new physio I see next week will be good, she's had some rave reviews from various people I know but none of them had V so we'll see. Nervous...
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Re: Vulva Specialist Given Up!

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