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Yesterday at 2:57 pm by amyhp

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

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Sun Aug 13, 2017 4:27 am by Hopeitworks

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» 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
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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 …

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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). …

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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


Flares? What are they?

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Flares? What are they?

Post  BpCookie on Thu Apr 04, 2013 4:18 pm

Hi dahlings, I read about women having *flares* all the time but in truth I'm not sure what a flare is. My burning pain is pretty constant, with an a few hours here or there with out any pain and my pain lvls fluctuate but I have only had a hand full of days with out any pain. (except for two glorious months when Lyrica actually worked). So when you talk about flare ups, what does that mean? Do you have days, weeks or months with out pain? Did you always have flares?

Thanks Smile

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Re: Flares? What are they?

Post  ringostarr26 on Thu Apr 04, 2013 7:33 pm

I actually had 3 years pain free!! don't ask me how because i have no idea! But after being diagnosed it took two years to get in under control where i would have weeks without pain and then 3 years pain free. Now I'm in a flare and it's been awful for over a month. what a drag. Sad

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Re: Flares? What are they?

Post  sassy26 on Thu Apr 04, 2013 11:01 pm

I was first diagnosed with vulvodynia in my teens and dealt with it for about two years. It went away all by itself for the next 2 1/2 years. I was able to have pain free sex and felt like my normal self again. Just this past week ive been feeling that familiar burn and it scares me to think that it could come back again. I hope this is just a flare and that I will still be ok.

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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 12:55 pm

I think it means different things to different women, I know some women on here have minimal pain daily and a flare is when that increases so they feel it all the time, for me it's when either my pelvis misaligns badly and increases my constant pain to a shocking level or when clothing irritates me and drastically increases pain so it's as variable as our symptoms. Didn't you say once you had a tight pelvic floor bpcookie? I seem to recall a conversation about it a while ago but I may have mixed you up with someone else!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 3:16 pm

Sarah hun, I have a bit of tightening on the upper left side. I went in for pelvic floor therapy one time and then my health ins. company refused to pay, so I never went back. I see women talk all the time about having back problems also, just like you had mentioned about your back being out of alignment. I've been meaning to see my chiro because my back has been horribly painful lately. I've had chronic back pain for 6 yrs and its only getting worse. My PS told me not to see my chiro just yet because I have been having different procedures done by my PS and if I do have pain relief, they want to make sure it was the procedure and not the chiro. *shrug*.

What you are saying about flares make sense. I don't have flares, not yet at least.

Ya know, since women speak of flares, I'm wondering if the vulva pain is connected to a Autoimmune Disorder. Like perhaps our body is attacking our good vulva skin cells? When I was seeing a vulva specialist and my vulva pain was resistant to all of her treatments, she wondered if I had an autoimmune disorder. Just a thought.

Have a good Friday. hugs
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sassy and ringostarr

Post  BpCookie on Fri Apr 05, 2013 3:20 pm

Hey girls, I'm so sorry about your flare. It must be so disheartening to go so long with out pain and all of a sudden *bam* the pain hits again.

Big hugs to you both
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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 5:31 pm

Do you know what bpcookie, I think once your nerve procedures calm down if they don't work you should definitely go back to the chiro and get your alignment sorted out plus you could always buy Heal Pelvic Pain by Amy Stein which tells you how to treat your own pelvic floor so it might work out combining the two if your insurance won't cover the pelvic floor part. Obviously your nerve procedures might help and this might not be necessary and I'm crossing my fingers for you!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:22 pm

Thank you Sarah Sweetie!!!! My entire back is screwed up. I have arthritis in my neck and also a thinning disc, I have scoliosis in my back, I injured my tail bone when I was a teen, something is wrong with my hip and leg and on top of that I have a burning bush, LOL. Im a freakin mess. I most def. need to see my chiro. and soon. He is fabulous and I could really use one of those hard core back massages (actually its more like back torture massages) but I still love em.

Anyways, take care dahling. hugs
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Re: Flares? What are they?

Post  Alana3 on Fri Apr 05, 2013 10:29 pm

Have you tried acupuncture? So worth it

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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:56 pm

Alana hun, no I haven't tried acupuncture for the vagina thing just the back pain, but it didn't work for the back pain. So have you done it for the vagina pain? If so, how do they do it?
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Re: Flares? What are they?

Post  Alana3 on Sat Apr 06, 2013 4:05 am

For hip back shoulder and vag. Didn't Work for vag (well the vaginismus it did) but no vulvodynia.it helps me more now but it works wonders I couldn't even turn my neck the other day and now I can Smile idk my lady researched everything tho not to say your person didn't but I throw so many things at her and she def helps me if not im very relaxed at least lol

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Re: Flares? What are they?

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