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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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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