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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» 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


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

New Member, happy to see an active forum! My story..

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New Member, happy to see an active forum! My story..

Post  Jenn89 on Mon Aug 19, 2013 12:37 am

I haven't really done any research or looked into Vulvodynia much AT ALL since I was diagnosed with it almost 7 years ago. It's been such a long and frustrating thing for me to deal with, and I cry at almost all of my doctors appointments. At my last one, she thought it would be a good idea to see a counselor. I can't picture someone knowing nothing about my condition being able to help me, so I decided to go on a hunt for a site. I was pleased to see that this one seems to be pretty active.

As for my story, I don't remember ever having pain. I used to have trouble inserting tampons. I was finally able to insert one one day when I was about 16. When I went to take it out, it wouldn't come out and was extremely painful to tug on. I was at my boyfriend's (now ex) house at the time and I had to ask him to take me home. I had to tell him it was girl problems.
Then I get home and I have to talk to my Mom, who I don't really share information with anyway. Turns out, I needed to take a trip to the ER. Thank God I got there just before the last female doctor left. They had to give me a few shots of numbing medicine down there to soothe the pain. No Turns out my hymen was very thick and they referred me to see an OBGYN since I never had.
I saw my first doctor who referred me to another doctor, who referred me to another doctor, who referred me to another doctor and so on..... until finally one decided I would need surgery to have my hymen removed.
I believe my hymenectomy was in 2007.
After the surgery I remember being told to sit on ice packs, and that was very painful.
My doctors now think that the surgery was a trigger, but I was already genetically set up this way.

I've tried (I'll be making many spelling errors) lidocaine, halobetasol, compounded ointments, neurontin, an antidepressant, physical therapy, and I'm doing exercises at home. Nothing seems to help. I'm completely hopeless.
It's hard living as a 23 year old with this issue. It's not easy finding a man that will understand.
I ended up breaking things off with my then boyfriend for other reasons, but he was very understanding. And unfortunately I just found another guy who was EXTREMELY understanding, but things just didn't work out.

I guess I just need some uplifiting words and advice, but not lies. I hate when my friends try to say the right thing. They don't really understand. I appreciate their effort, but I guess I just need to talk to someone who's going through it.

Sorry it's so long. I hope some of you still take the time to read it. I really need some support!


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Re: New Member, happy to see an active forum! My story..

Post  Cat_in_Canada on Sun Aug 25, 2013 3:54 am

Hi Jenn,

Thanks for sharing your story. I understand how frustrating it can be to suffer from this condition. I've talked about my condition to two different psychiatrists. My current psychiatrist tries to be understanding, but I'm not sure if she really gets it. However, she is much better than the first psychiatrist I saw, who told me that my problem was that I was trying to have sex outside of marriage, and that once I was married and trying to get pregnant, everything would work out. I thought that was pretty unprofessional and offensive!

I have also had a tampon stuck inside me before. If anyone else has this problem, one thing to try before going to the ER is to drink a ton of water. For me, it is difficult for my muscles to remain tensed when I'm peeing, so that is how I got the tampon out! I don't know if that would work for everyone though.

It can be difficult to find a partner that is understanding, and I'm glad you have had some positive experiences. I think the most important thing in a relationship is to communicate what you are feeling, and to make sure that he understands that the problems you may be having with sex are due to your medical condition, not him.



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Re: New Member, happy to see an active forum! My story..

Post  tinkerbelle2 on Sat Oct 12, 2013 6:58 pm

Hi Jenn, I'm also quite new to this forum and delighted that people actually respond.

Sorry to hear you've had such a rough time. I'm 21 so not much younger than you, and it really is such an awful thing to go through. Things are stressful enough at our age.

How are things with you at the moment? I've tried most of the things that you have too and none have made any permanent improvements. Xx

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Re: New Member, happy to see an active forum! My story..

Post  Nelsonhs30 on Thu Oct 24, 2013 6:35 am

Jenn, my story is identical to yours! Also had the hymenectomy which probably triggered my vulvodynia. Hang in there! Something will work! I'm currently on gabapentin 1000mg and still waiting. Have you taking of surgery? It may be our best option, especially if nothing else was working for you. Stay strong! Personal message me if you ever wanna talk!!


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Re: New Member, happy to see an active forum! My story..

Post  mary jane on Thu Oct 24, 2013 8:22 pm

Jenn, what are your symptoms ?
So sorry to hear you have this, I know what it's like , I'm 26 and feels like I will die alone and in pain
mary jane

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Re: New Member, happy to see an active forum! My story..

Post  Jenn89 on Wed Aug 27, 2014 12:02 am

Wow. I feel like a horrible person! I was so excited to find a forum that was active.. Then i became inactive. I recently hit a milestone though so I thought of this forum and told myself I needed to catch up! Things are still pretty painful. Even everyday things like driving in the car or sitting in a chair get me. The dating thing is still rough. But i have to say, every person that I was saying & told, was so understanding. It's crazy. I've been so lucky! As for my milestone, well, I finally had intercourse for the first time at age 24.
It hurt.
We used lots of lube, it wasn't so bad going in, but he said I was so tense I was pushing him back out. So I had to remind myself to relax and took deep breaths. Every time he would "flex" I would feel tons of pain! So he tried to hold back on that. He coached me through it. Finally after only about 3-5 minutes I told him I had to stop. He pulled out and I just laid there. As I laid there I felt the blood leaving my face and I started to see stars. I was about to pass out. Ugh. I don't know if it was the anxiety, the pain, or both, but it was rough.
I think if I practice more, it'll get better.


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Re: New Member, happy to see an active forum! My story..

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