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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 …

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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 …

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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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Questions about amitriptyline and physio

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Questions about amitriptyline and physio

Post  Delilah1 on Mon Jul 15, 2013 3:23 pm

Has anyone tried amitriptyline or nortriptyline for a while (6 months or so) and your pain went away and then you slowly stopped taking it and the pain stayed away?   I've been wondering if this is all caused by muscles/nerves then why is it if you have a pinched nerve/muscle issue or alignment issue in your upper torso  you don't get a sore irritated, raw, red throat?  It's the same kind of body cavity-??  I still wonder if secondary V is caused by some kind of infection not identified yet.   People used to believe gastric ulcers were caused by stress and now they know it's caused by Hpylori bacteria.  They now believe IBS is caused by some bacteria.(still researching it)  Just wondering and wanted to share my thoughts.  thanks


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Re: Questions about amitriptyline and physio

Post  jen007 on Tue Jul 16, 2013 4:46 am


I had been taking amitriptyline for about 6 months a while back. It did help reduce the pain, but it didn't go away completely. I eventually stopped taking it. The side effects were bothering me a bit. They weren't really bad or anything. One was weight gain...accept for me it made me completely loose my appetite and I ended up loosing quite a bit of weight. You're more likely to gain though, I was like the only person who ever had that symptom that my doctor knew of. Also because amitriptyline is an anti-depressant I started to feel less like myself. Just more quiet and wanting to stay home and lay around. After I stopped taking it the pain came back about a week or so later. Its been over a year and I still struggle with the weight loss. I can't seem the gain the weight back sadly. I was small the begin with so now I'm even more tiny.

I hope I was of some help! Let me know if you have any other questions about amitriptyline!



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Re: Questions about amitriptyline and physio

Post  Kathy100 on Tue Jul 16, 2013 9:43 am

Hi Delilah1

I've been taking nortriptyline since December - I started on amitriptyline but couldn't take the side effects (I was zombie like, forgetful, made mistakes at work & had tingling in the legs on a 10mg dose). The nortriptyline helped a lot with the burning pain (and the specialist I was seeing said that it gave the nerves a break) - I'm now trying to wean myself off it and am down to 5mg a day. The main side effects for me were feeling tired, drugged, anxious and also, more seriously a drop in blood pressure. Like Jen I lost weight which I'd put down to the stress of it all which I haven't gained back but it could have been the tablets. Physio helped me and doing stretches to correct my pelvis (which is misaligned) is helping too. The V pain is still there but much less. From my experience taking it helped me with a break from the pain before I started physio but watch out for the side effects.
Hope this helps & good luck!


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Re: Questions about amitriptyline and physio

Post  Sarah001 on Tue Jul 16, 2013 4:41 pm

Hi Delilah, I take Ami which was originally prescribed for sleep issues due to my Fibro but the vulvar specialist upped the dose to see if it would help my pain and it didn't I'm afraid, I was woozy to begin with but I don't even notice it now (I still take it for sleep). I gained 5 pounds from the Ami then it stopped (until I started on the Lyrica and I ballooned! Rolling Eyes ) and the only symptom I have now is a very dry mouth at all times which has damaged my teeth from lack of saliva but luckily my dentist has put me on a prescription toothpaste to help my teeth.

As for the nerve question, the redness in the vestibule is more likely the muscles being affected by the nerves and clenching and spasming. If your throat did the same you'd be an emergency situation so it would never get to the raw red throat stage! Some trigger points cause weird sensations too like some of mine make me itchy when I press them and on me the referral patterns are often unexpected and odd. Nerves can cause pain anywhere along their course and upset the soft tissue along the way. physio has helped alot of ladies on this forum so it's well worth giving it a decent try but make sure you do the homework or it will fail. Good luck.

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