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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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New here/Advice about life with vulvodynia

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New here/Advice about life with vulvodynia

Post  blueberryrabbit on Mon Sep 08, 2014 3:06 pm

I haven't been on a website forum in years, but this is probably the only way I can really talk about this.

I'm 23, and I've had vulvodynia/vestibular pain/pelvic floor dysfunction since I was 15 (I've probably had it for much longer than that and don't really remember). I also have PTSD from being in a sexually and emotionally violent relationship for 5 years. I can have sex, but not without pain, and having flashbacks/panic attacks after awhile. I have moments where I can't walk, or really think about anything other than my pain. Bike riding, sitting in really uncomfortable chairs, or anything that requires a lot of pressure on my pelvic muscles is impossible.

I can't afford to go to a physical therapist (who can only be seen once every 6 months anyways- my insurance is funny like that), and medications such as Gabapentin make me sick. So all I can really do is find strategies to deal with my pain. I squat when I pee to prevent anything touching down there, and I try not to wear pants/underwear that prevents me from "breathing down there", haha. Ice directly on my vestibule helps when I'm in pain, but I feel embarrassed bringing ice with me to the bathroom when I'm not home.

I'm frustrated that I have to live with a pain condition, but the most I can do is try to accept it. I'm extremely worried that I'll never be in a relationship with someone who understands the physical and emotional intensity that I deal with. I've tried to explain my condition to other women, especially those of my friends who are "sex advocates", but they don't really understand that it exists anyways. I feel completely alone, and I don't want to acknowledge my sexuality, because I've given up ever really having one without excruciating in mental and physical pain.

Smile I appreciate you reading this and I'm hoping you all find peace and healing.


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Re: New here/Advice about life with vulvodynia

Post  RoseKa on Mon Sep 08, 2014 6:57 pm

Hi blueberryrabbit

Im sorry to hear what you are going through and while so young sweety! I hope you will get a lot of support and understanding from the members here. I know that this condition is a living hell at its worst, ive been there for a long time... im now on a journey to heal it one day at a time without medications then i found the other thread on here called "Pain Free With Dr Robert Morse" and have since been helped a lot for free on that thread by a generous and wise young man who has answered all my questions so far and steered me in the right direction. Im now in much less pain, i can put warm water on the vulvar without the pain increasing (it used to make it burn and sting so badly i would go into a fetal position and cry). Other benefits are that i sleep better at night and my high blood pressure is almost within a healthy range.... Me and my hubby think that if it continues to get better at this rate we might be able to have sex again soon, after a long time without it because i eventually couldnt stand the pain it caused

It is so sad to me that someone so young has to deal with this. I hope you can maybe read that whole thread. Maybe it will help. I dont think we have to live with this if we dont want to and choose to really do something about it... So far my experience is that we just have to do what it takes to help the body heal it and have patience while it takes care of the rest http://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse


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Re: New here/Advice about life with vulvodynia

Post  sailor_moon on Mon Sep 15, 2014 11:41 am

Oh you poor poor thing. I so feel for you.

I am only a couple of years older than you. I know how hard it is being a young person with this nightmare of a condition.

Can I ask what type of symptoms you experience? And do you have any other symptoms besides vulvodynia and your mental state?

I have only just gotten onto a great doctor after a year and a half...and after 12 other doctors telling me it was all in my head and needed antidepressants. It turns out I have an EXTREMELY rare hormone imbalance, one that goes undetected unless you pay to get a special blood test done. I am in the midst of other tests to put the pieces of the puzzle together so I can't say I'm cured yet, but its a great start after a year and a half, and $8000 down the drain on treatment that hasn't worked.

Have you seen a Gynecologist that specialises in vulva disorders?

Don't give up. Sad no one should have to live with this.


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