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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 4

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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

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

MAY HAVE FOUND A CURE- PLEASE READ

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


Do we belong?

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Do we belong?

Post  Cait on Sat Sep 17, 2011 10:47 pm

Hello, I'm a transgender woman and I'm asking on behalf of trans women with vulvodynia whether or not we belong in a forum such as this. Obviously we wouldn't want to intrude if we're not welcome - i.e. if our pain is less 'legitimate' because we were not born with vulvas and we had surgery to create them.

~Cait.

Cait

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Re: Do we belong?

Post  Mette on Sun Sep 18, 2011 10:25 am

Hi Cait

I'm new to this forum as well, so I don't know what the general consensus is, but in my opinion pain is pain.
To me the worst thing about this disease is that it makes it difficult to have a normal sex-life, which makes it difficult to have normal love life. From looking around on this forum it seems that a lot of women feel that way. I can't imagine what that must be like for you. Trying to establish an intimate relationship with someone with all the prejudice and stereotypes on top of all the problems the rest of us are experiencing. I can only imagine the frustration you must feel, when you finally get the body that you want (I imagine that it is a very long and difficult process) and then you a still not able to live the life you long for because of this horrible condition.
I think we can all relate to the frustration that comes with the tabu of this pain condition. And just because you had your vulva created it doesn't mean that it is less real.

Did your pain come as a result of the surgery or did it emerge afterwards?
What kind of treatment are you trying to relief the pain?

best, Mette

Mette

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Re: Do we belong?

Post  Sarah001 on Sun Sep 18, 2011 7:51 pm

Hi Cait, my first thought was would anything we discuss here be relevant to you then I realised of course it would, some ladies here have pain provoked by surgery and therefore possibly nerve damage or scar tissue etc. Then there's the pelvic floor, surgery in the genital region could quite easily set off pelvic floor dysfunction in women born with vulvas and women who weren't. Then of course hormones, or spinal issues or hip problems etc etc so I don't see any reason why this forum wouldn't be a suitable place for you ladies. I'm sure the majority of women on here will agree with me and Sebby is our founder and leader but a bit under the weather right now or I'm certain she'd be welcoming you the same as she does everyone. So welcome to the forum and feel free to discuss anything with us.
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Re: Do we belong?

Post  Cait on Mon Sep 19, 2011 6:59 am

Thank you for your replies; I understand that my question was probably a little awkward and unexpected.
A little history wouldn't go amiss:
I had GRS (Genital Reconstructive Surgery) in November last year, to create a functioning vagina and vulva. I had problems after surgery with clitoral sensitivity, which meant that I couldn't walk without a lot of pain, even though everything appeared to be well healed. I also had pressure pain on the bottom of my outer labia which made having penetrative sex really sore and made wearing certain kinds of underwear totally out of the question.
The clitoral situation has vastly improved, though I still get the odd twinge now and again for no apparent reason.
The labial pain, while better, is still there and continues to cause problems during sex, though I can mentally master the pain sometimes. If I wear bikini-styled underwear, it starts to become uncomfortable after a couple of hours.
Then of course there is the regular dilation I have to do to keep my vaginal cavity from closing, which really doesn't bear mentioning, since that's often one big uncomfortable pain-fest.
So that's my story.
I'm hoping that it all just goes away with time. It's been nine months now and I hope it doesn't end up lasting a lifetime.

Cait

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Re: Do we belong?

Post  Sarah001 on Mon Sep 19, 2011 5:28 pm

I can't help but think there's going to be trigger points and restrictions in your pelvic floor, it must have been heavily involved in the surgery and quite possibly reducing blood flow to the area. Have you tried skin rolling the labia? It can help remove stuck fascia, trigger points and help reduce sensitivity to touch, it's always recommended for anyone with scarring in the area so it might help.
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Re: Do we belong?

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