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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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getting pregnant and vulvodynia

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getting pregnant and vulvodynia

Post  londonlady on Mon Jul 02, 2012 8:35 pm

Hi Ladies,

Before I started getting V about a year and a half ago, I sadly lost a baby at 16 weeks. She was a surprise baby when I was 23 and had just started seeing someone, but we both wanted to keep her and were excited about the pregnancy, so it was a massive loss which has left me wanting to be a mum much earlier than I had thought before.

I often think about trying for another baby. Although it is not the right time financially at the moment, I hope that in a couple of years it will be something we will do.

However, at the moment the only thing which seems to help me is a relatively high dose of amytriptaline, which is not safe in pregnancy. I tried reducing it recently but the pain was too much. although I am hopeful about physiotherapy, I really worry that I won't ever be able to come off it and try for a baby.

I wondered what other people have done when faced with this and if anyone can share any positive stories about trying for a baby with vulvodynia.

I know I should try and focus on the here and now but it feels like a weight hanging over me sometimes!



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Re: getting pregnant and vulvodynia

Post  Azraella on Wed Jul 11, 2012 9:28 pm


I am so sorry to hear about your loss.

I am 27 years old 26 weeks pregnant and have had V for four years now, tried many treatments including surgery..twice. I have not found ONE thing that helps with the pain.

My partner and I have been together for 6 years and sense I got V we have sex very little so I am oddly lucky to have gotten pregnant.

I worry all the time that I will not be able to give 100% into being a mom because I am in constant pain...I am very excited and happy, don't get me wrong but it is hard being in so much pain all the time.

But if I can do it anyone can do it! So please never give up on your dreams of being a mommy because of V. Good luck to you when you do decide the time is right.

Also I have never tried anitripdylin (mspelled) I wonder if when I have the baby if it is something I should try? My pain is constant and unprovoked, it gets worse after sex(like the next morning) and it is a STRONG burning feeling. Is yours anything like that? Just asking because I might ask my Doctor if I can try this medication after pregnancy.


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Re: getting pregnant and vulvodynia

Post  londonlady on Sat Jul 14, 2012 9:25 am

Hi Azraella,

Thanks for your message and congratulations on your pregnancy!

I'm sure it must be worrying thinking about being a mum and still being in pain, but I'm sure that you will do it! Pain can make me feel really anxious about not being able to do things but I am always surprising myself by doing those things anyway.

It could be worth trying Amitryptaline once the baby arrives (although I would think you probably can't mix it with breastfeeding, but I'm not sure). It has definitely helped me to live a more normal life with much less pain on a daily basis/when having sex.

It is actually an anti-depressant, but prescribed in lower dosages for pain relating to nerves (vulvodynia but also other types of chronic pain) which don't respond to other pain killers. You have to start it at a low dosage and then increase it slowly (i.e. each week) until you get to the dosage that blocks your pain.

It does have some side effects which I don't like: it can make you pretty drowsy and a bit foggy, and you get a dry mouth. some people also find it makes them put on weight, but I haven't had that, and have been taking it for about a year. You can't drink as well if you are taking it.

I found these side effects (especially feeling drowsy) were much worse when I first started taking it - but after about 6 weeks (which I know is a struggle!) they stopped affecting me so much and I could get on with my life almost normally. I take them at night so that I mostly sleep through the time they make me drowsy and just feel a bit more tired than usual in the day.

A physio also said that gabapentin could help - this is another drug which relates to nerve pain.

None of these pills are cures but they make the symptoms more manageable while I look for a way to tackle the problem.

Also, have you tried physiotherapy at all for your pelvic floor muscles? Mine is very tight with lots of trigger points (muscle knots) and I am seeing a women's health physiotherapist to learn how to relax it and essentially do some deep tissue massage to help.

Good luck - and take care in your pregnancy



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Re: getting pregnant and vulvodynia

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