Log in

I forgot my password

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 …

Comments: 23

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 …

Comments: 0


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?

Comments: 0

8 years and struggling

Go down

8 years and struggling

Post  srbry on Sat Mar 03, 2018 2:18 pm

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 was embarrassed and figured it would just take a wee bit of time to have pain free sex, i figured it would take my body a bit of time to get used to it. After that I had a boyfriend at university and was with him for 2.5 years. Sex still hurt but it wasn't every single time at the same time. Sometimes it would be sore from a finger, and he couldn't even penetrate me, sometimes part way through penetration it would begin to really hurt, sometimes (very very very rarely) it would be ok but the pain would come on after. The pain is at the entrance to my vagina and it burns. It's near the bottom (just above the perineum) and the pain feels like I'm being burned or sliced with razor blades.

When I was at uni I went to the dr about 12 different occasions, had loads of tests done for STIs, yeast infections etc and they always came back negative. I was essentially shooed out of the door and told it was all in my head. My boyfriend was understanding and lovely but he was the only person who knew about this and it sometimes took a strain on our relationship. After me and him broke up I confided in my mum and told her the problem. She told to me to demand a referral to a gyno which i did and i'm currently being bounced around the NHS. I see a different dr each time and therefore have to have a new examination each time. Several drs have made me cry from being so insensitive (always female drs which shocked me) and last time I was at hospital in January a dr literally shrugged at me. I'm being referred to a neuro gyno and have an upcoming appt in April. I've had so many scans and nothing can be found for cysts / endometriosis etc. I've spent months with a psychosexual counsellor, I've had a few sessions with an acupuncturist and now I'm seeing a hypnotherapist (I've only had one session so I'll have to wait and see how that goes).

Emotionally I'm broken down. I worry about getting involved with any man because of this huge issue and my self confidence is very low. Yes I know that if a man doesn't accept it and deal with it properly he's not worth it - but that doesn't really help me. I ended up asking my best friend for a favour almost 2 years ago - I needed to have sex and he was single so could he help me. There was no way for me to track any progress unless I was sexually active so he's been a great help to me and is incredibly supportive. He recently sent me an article on vestibulodynia and said it sounds very similar to what I have. I've printed loads of info about it and will take it to my next appt with the dr as I think it's sometimes more beneficial to take your own ideas with you - from past experience. The pain isn't all around the "clock face" it's just at 5, 6, 7. Where it really just feels like I'm too tight. I've tried dilators in the past but found the whole process incredibly painful and anxiety provoking.

Does anyone have any idea if this could be vestibulodynia? Even though the pain is only nearer the perineum and it doesn't hurt to the same degree each time?? And does anyone have any hints and tips for how to make the process of using a dilator less traumatic and more useful? I find that drs haven't been giving me much guidance on this kind of thing. I just read a post below and have bought the Amy Stein book "Heal pelvic pain" as it was recommended, and will look in to doing more yoga, but if anyone has any more advice please please please please please help. I'm going a bit crazy. 8 years is a long time and is really effecting my mental health. Another issue with my life is I don't always stay in the same place. Last year I lived in Africa (with no access to a gyno) so my hunt for a cure was put on hold for a year. In june I'm moving to Vancouver (definitely more medical help available in Canada but also pretty expensive for a Brit on a budget). I know this is a long shot but if any Canadians happen to read this and could give me any advice on help to get while I'm out there that would be amazing.

I've read a lot of the stories below and I feel for everyone. I know exactly what it's like and just want it to be over. Thanks for taking the time to read this xxxx


Posts : 4
Join date : 2018-03-03

View user profile

Back to top Go down

Back to top

- Similar topics

Permissions in this forum:
You cannot reply to topics in this forum