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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

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 …

Comments: 3

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 …

Comments: 1

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 …

Comments: 3

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: 4

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, …

Comments: 9

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 …

Comments: 0

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

Looking for Someone to Listen

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Looking for Someone to Listen

Post  Trying on Mon Aug 08, 2011 6:27 am

Hello everyone,

I've been searching online for some sort of vulval pain support group since I don't have any friends or family who want to talk with me about my vulvodynia, which is what the doctors have said I have. It's getting to be too much to handle on my own, and my ex-boyfriend of 3 years did not know what to do to help me either. I feel very alone and hopeless.

Since I first had my period when I was 14, I cried whenever I tried to put in a tampon. My sister/mother laughed at me, saying I must just "have the wrong hole". Ashamed and embarrased, I have avoided using tampons unless absolutely necessary, and have never once had a pain-free tampon insertion. However, I don't have any pain unless a specific area is touched, so I suppose I'm lucky compared to some women who have pain all the time. (Although "lucky" is a relative term.) Razz

10 years later, I saw numerous doctors after trying to have sex multiple times, with it ending quickly with nothing but pain and tears. A geneicologist finally told me I have vulvodynia, and for 2 years now I have tried numbing creams, antidepressants, acupuncture, and physical therapy, but to no avail. All methods seem to relieve about maybe 10-20% of the pain only, which is on a scale of about 8/10. This means I still can't have sex - all I feel is pain, no pleasure at all. My ex-boyfriend, who wanted a sexual side to our relationship, couldn't understand my problem. He tried to be very gentle and caring, but I just had no desire whatsoever, because everything ended in pain for me. We tried seeing a counsellor and trying alternative ways to be intimate, but in the end he needed my vagina to be a part of things or it just wasn't good enough. I never really had much of a sex drive before this, but now I dread the thought of anything and feel resentment and anger.

So after 3 years, I have broken up with him because I just can't take the torture anymore - trying to please him while not wanting anything and feeling constantly pressured to try again - because "this time it might be good". He's asked how he can help, and I don't know. Not having a sexual relationship doesn't seem like something any guy would agree to. All I know is that I feel extremely alone and hurt.

To add to this physical problem, it also doesn't help that at about the age of 16 I learned that my father is addicted to pornography, and my parents divorced. We had been a very loving, happy family before this - but afterwards it ended in ugly arguments and a broken home. My poor mother just couldn't take my father's lies and false promises anymore. That shattered my once-good relationship with my father, who chose pornography over his family. Since then, I have had a strong distrust of men as being controlled by their physical desires. Although this distrust started after my original discovery that I could not insert a tampon, I'm sure this mental issue doesn't help my physical one. Although it's definitely hard - sometimes I wonder if it's just all in my head, that I'm mad at men and I've done this to myself with my negative thinking. My boyfriend has told me to just relax more and maybe it'd be fine. It's heartbreaking. I hope it's not just in my head, but who knows.

So, this is where I am: feeling alone and depressed and like a complete freak. Breaking up with the man I love because I can't take the pain and guilt and anger and resentment and arguing anymore. No one seems to understand how I feel or what I'm going through.
I guess I hope by posting on this site I can finally find someone who can understand what I'm going through. Even if there's no advice, it'd be nice to know I'm not alone in my suffering.

Thanks for listening,


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Re: Looking for Someone to Listen

Post  Sarah001 on Mon Aug 08, 2011 12:08 pm

Hi and welcome. I think you should read a copy of "When Sex Hurts" which lists all the reasons for vulvar pain. As yours started from first tampon use it sounds like you might have a genetic overgrowth of nerve endings in the area which I believe they would use lidocaine on plus dilator work to get used to penetration slowly and of course pelvic floor therapy if those muscles are tight. It's a very good book that removes the mystery behind the useless non-diagnosis of "vulvodynia". Have you tried lidocaine at all? Also not all physiotherapy is created equal so it may be you didn't get to do the things you needed before, it really depends what your PT involved. There could well be a psychological element not just because of your recent family issues but also because your sister and mother laughed at your inability to use tampons so there could be some tensing up involved because of how worried you were about it with no input from family. I would start with that book though and see if there are treatments listed in there you haven't tried and go from there.

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Re: Looking for Someone to Listen

Post  Mouse on Tue Aug 09, 2011 10:31 am

Hi and welcome. How very brave telling your amazing story. I'm really sorry you have had so much pain and incredibly sad that your relationship ended.

It sounds like you have been searching for answers without a lot of support. When you say you have had counselling, do you have a supportive relationship now? For a lot of us that's the one relationship that helps the most. Have you been completely honest with your Mother and sister? This is a really difficult condition to cope with alone maybe you could try to gather some support from your family. There's a lot of information on vulvodynia available now maybe you could offer them some research to read. Do any of your friends know? Could your ex become a friend or is that too hard?

Unfortunately there are a lot of women on this site around your age who they are facing the same issues. Between us we've tried most things and we've got a lot of advice. I think Sarah's suggestion is great, reading and researching is a great place to start. I'm fairly big on lifestyle changes. Taking good care of yourself, making dietary changes (yes I mean sugar), exercise (if you can), face time with favourite people, good sleep, time in the sun, meditation, a supportive relationship with a therapist - anything really that nurtures you.

Good luck Very Happy


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Re: Looking for Someone to Listen

Post  Trying on Mon Sep 05, 2011 7:52 am

Thanks for the advice ladies.
I picked up a copy of "When Sex Hurts" and it is indeed an info-packed and very new, up-to-date book. I'm still reading through it, but it's nice to know that at least some doctors care about this issue and are working towards researching and understanding it more!

I've also made an appointment to talk with a sex therapist. There's only one licensed practicioner in my city, and it costs a whopping $170/hour! Even with my health insurance, I'll still be paying $120/hour, ouch. I'm still paying off student loans and don't have a lot of money, so it's pricey. I know it's important and health is worth the time and effort, but still.... Sad

Anyhow, hopefully the psychologist I see in a few weeks has some new input and ideas for me to try. I might also try some physiotherapy with a centre that's supposed to be familiar with vulvodynia. But again, the issue of location and cost make it difficult to squeeze into a busy/low-income schedule. I guess I just have to try and be positive and hope that there are small investments into becoming healthier.


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Re: Looking for Someone to Listen

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