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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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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