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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico


I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

6 years of "it's in your head"

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6 years of "it's in your head"

Post  thanatologist on Thu Jan 09, 2014 5:03 pm

Hi all!

I have been dealing with this issue for 6 years. I would go to planned parenthood and I would tell them sex was basically impossible, and they told me it was a lube problem. It was not a lube problem and I told them for 6 freaking years that was not the case.
I recently moved out of town and into a small college town where I am an undergraduate. I made an appointment with the school nurse and FINALLY on Monday, she confirmed I have vulvodynia and I was so relieved. (well, to know it wasn't just in my head!)
I have felt so alone and so crappy. I have a fiancee and we have been engaged for 2 years and together for 4. I have sex maybe once every few months with him. He is patient, loving, and caring, but I feel like an absolute failure and often wonder why he even stays with me because I am defective.
I started a regime of 2% lidocaine jelly and 10 mg of Nortriptyline. Has anyone else tried this combination? So far, that pill just knocks me out about 5 minutes after I take it.
Thank you for the support. This being such an unknown area in the medical world definitely sucks.


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Re: 6 years of "it's in your head"

Post  mary jane on Fri Jan 10, 2014 6:39 pm

it's rather infuriating to have doctors NOT listen to you and label you as "psychosomatic" (right, because chronic pain is impossible)
the amitriptyline/nortiptyline and lidocaine combo is standard therapy for vulvodynia....
I know what you mean by painful intercourse, but there is no reason to feel there is something wrong with you sexually... you have a medical condition, that is something different. If he does not understand, his problem... similarly you could have underwent surgery to leave you unable to have intercourse from the pain! these things happen unfortunately....

amitriptyline helps me, but I have pure nerve pain.... if you find the nortiptyline does not help you (you have to WAIT for it to build up in your system, it took me 2 months to get pain relief), then switch to something else....

if you are in the US, dr Fred Howard in Rochester is VERY good: https://www.urmc.rochester.edu/people/21596933-fred-m-howard
mary jane

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Vulvodynia sucks, doesn't it?

Post  Fingerscrossed on Fri Jan 10, 2014 10:02 pm

I had very similar situation to you, which is a bit eerie. I went to Planned Parenthood from the time I was 18-23 (moving to Kentucky for graduate school when none were available), and could not understand why getting a pelvic exam hurt so badly. They suggested that I was unable to relax, had me do STD tests (came back negative), and had me switch pills. I went to my undergrad health center where they suggested it might be vulvodynia, but really couldn't do anything about it. They suggested I dilate and use lidocaine, but it didn't help and only made me more upset.

I finally sought help last March after dealing with this issue for six years and was officially diagnosed with provoked vulvodynia and pelvic floor dysfunction by Dr. Robert McQuady at the Pelvic Pain Regional Specialty Center in Louisville, KY. I've been on amitriptline since that time, lidocaine as needed, and also baclofen, which is a muscle relaxer. I don't know if they've actually been working or not. I tried using Lyrica, but couldn't stand the symptoms. It made me so drowsy that I nearly fell asleep driving to my appointments and in classes. My doctor is two hours away (three with a time change), so I could not do weekly physical therapy sessions until I finished my semester classes in May. I did therapy on a weekly basis from May-August and had some improvement with the pelvic floor dysfunction, but nothing with the vulvodynia. So, I underwent a vestibulectomy on December 17, 2013 and am currently still going through recovery. I just had a checkup yesterday and he said everything looks good, but I haven't been able to test out my new parts since it's only been three weeks.

Throughout this time, I have been with a wonderful man. We've been together for six years now--1 1/2 years dating, 3 1/2 years engaged, and one year married. He and I lost our virginity to one another and for a time, I was able to have pain free sex, though it took many attempts over different dates for him to be able to actually penetrate me in the first place. I've never been able to use tampons or have pain free pelvic exams. My husband does get frustrated sometimes and we essentially are in a sexless marriage because it is painful for me, but he understands and wants what is best for me. However, I hope that the vestibulectomy will work as it is supposed to it and one of my barriers to a pain free sex life will be gone. Once I get the okay, I will be continuing physical therapy and maybe the pelvic floor dysfunction will go away.


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Re: 6 years of "it's in your head"

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