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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


Is this even vulvodynia !!!!

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Is this even vulvodynia !!!!

Post  Ouch123 on Wed Dec 09, 2015 11:57 pm

Hi all,
I would like to explain my symptoms and see if it fits.

I am burning from the top of my labia all the way past my anus, to my sacral region. The pain is sometimes a pinch in a specific labial area, but mostly its just all over. There is sharp pain in my "crack" between my anus and sacrael area, as well as labia and vaginal opening. I was diagnosed with herpes last month. I have never had an outbreak, they just found it on a blood test. I was told that although my herpes wasn't active, I had been exposed at some point. I suspect that maybe this is a herpes thing instead of a true vulvodynia thing. I don't know how long I had the hsv2 virus, maybe a long time. I don't know, my doc just sort of shrugged and said "they are both nerve problems".
Text book vulvodyna seems to be a little more localized than I am describing. I'm particularly interest to know if those of you with vulvodynia suffer sacral pain. Any insight.

Unfortunately, I cant take antivirals like Valtrex. I am in an unbelievable amount of pain. I don't really know what to do and I am extremely frustrated by the lack of urgency on the part of my doctors. I'm taking gabapentin, but I cant take it during the day. It helps me to get a little relief at night so I can sleep.
this seems like a weird place to say this, but, I really don't see a way to keep living. I see that people suffer with this condition for years. I am 50, no kids, no husband. I really just don't see the point. I am not depressed or impulsive. I actually work in the mental health field and feel like I have a pretty good handle on my own neurosis and mental health issues. I feel pretty sad about it really, I don't really want to die, but I don't see any way to stay living. I'm between an 8-10 on the pain scale all day every day (in tears from pain at times), and I have absolutely no chance of ever developing a meaningful intimate relationship.
Don't worry, I'm not on the ledge, its a decision I will make after I have exhausted treatment options, but at this point, I haven't been presented with any treatment options other than gabapentin. Sorry for the morbid disclosure....

Ouch123

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Re: Is this even vulvodynia !!!!

Post  PainBlogger on Thu Dec 10, 2015 9:07 am

It may be worth you getting a physio/PT who specialises in pelvic pain to assess you. I don't know where you are in the world so whether you'd need a doctor's referral. But various nerve issues or lower spinal issues could cause pain in the sacral region and around the coccyx. Pudendal neuralgia can cause vulval pain. There are other treatments other than drugs, especially if the herpes virus is not the actual cause of your symptoms.

I do get some sacral pain, but I have fibromyalgia so I get pain pretty much everywhere. There are a couple of books you may find useful reading: Amy Stein's 'Heal Pelvic Pain' and Isa Herrera's 'Ending Female Pain'.

I know at the moment you feel you've no chance of ever developing a meaningful intimate relationship, but, with all due respect, that's not an outcome that is set in stone. Try to take one day at a time. I hope your symptoms improve soon.

PainBlogger

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Re: Is this even vulvodynia !!!!

Post  Ouch123 on Thu Dec 10, 2015 4:24 pm

I just came from my new doc. She said my v was indeed atypical as i am not sensitive to touch. Its more a nreve thing. I dont really know if thats good or bad, but thats what it is. My guess is that its post herpetic neuralgia, which tends to resolve after a few months. I feel like i can cope a bit better if i know there is a possibility of relief eventually.
Thanks for your response

Ouch123

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Re: Is this even vulvodynia !!!!

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