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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

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.

Comments: 1

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 …

Comments: 0

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!!!

Comments: 6

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


New here/Advice about life with vulvodynia

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New here/Advice about life with vulvodynia

Post  blueberryrabbit on Mon Sep 08, 2014 3:06 pm

I haven't been on a website forum in years, but this is probably the only way I can really talk about this.

I'm 23, and I've had vulvodynia/vestibular pain/pelvic floor dysfunction since I was 15 (I've probably had it for much longer than that and don't really remember). I also have PTSD from being in a sexually and emotionally violent relationship for 5 years. I can have sex, but not without pain, and having flashbacks/panic attacks after awhile. I have moments where I can't walk, or really think about anything other than my pain. Bike riding, sitting in really uncomfortable chairs, or anything that requires a lot of pressure on my pelvic muscles is impossible.

I can't afford to go to a physical therapist (who can only be seen once every 6 months anyways- my insurance is funny like that), and medications such as Gabapentin make me sick. So all I can really do is find strategies to deal with my pain. I squat when I pee to prevent anything touching down there, and I try not to wear pants/underwear that prevents me from "breathing down there", haha. Ice directly on my vestibule helps when I'm in pain, but I feel embarrassed bringing ice with me to the bathroom when I'm not home.

I'm frustrated that I have to live with a pain condition, but the most I can do is try to accept it. I'm extremely worried that I'll never be in a relationship with someone who understands the physical and emotional intensity that I deal with. I've tried to explain my condition to other women, especially those of my friends who are "sex advocates", but they don't really understand that it exists anyways. I feel completely alone, and I don't want to acknowledge my sexuality, because I've given up ever really having one without excruciating in mental and physical pain.

Smile I appreciate you reading this and I'm hoping you all find peace and healing.

blueberryrabbit

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Re: New here/Advice about life with vulvodynia

Post  RoseKa on Mon Sep 08, 2014 6:57 pm

Hi blueberryrabbit

Im sorry to hear what you are going through and while so young sweety! I hope you will get a lot of support and understanding from the members here. I know that this condition is a living hell at its worst, ive been there for a long time... im now on a journey to heal it one day at a time without medications then i found the other thread on here called "Pain Free With Dr Robert Morse" and have since been helped a lot for free on that thread by a generous and wise young man who has answered all my questions so far and steered me in the right direction. Im now in much less pain, i can put warm water on the vulvar without the pain increasing (it used to make it burn and sting so badly i would go into a fetal position and cry). Other benefits are that i sleep better at night and my high blood pressure is almost within a healthy range.... Me and my hubby think that if it continues to get better at this rate we might be able to have sex again soon, after a long time without it because i eventually couldnt stand the pain it caused

It is so sad to me that someone so young has to deal with this. I hope you can maybe read that whole thread. Maybe it will help. I dont think we have to live with this if we dont want to and choose to really do something about it... So far my experience is that we just have to do what it takes to help the body heal it and have patience while it takes care of the rest http://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse

RoseKa

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Re: New here/Advice about life with vulvodynia

Post  sailor_moon on Mon Sep 15, 2014 11:41 am

Oh you poor poor thing. I so feel for you.

I am only a couple of years older than you. I know how hard it is being a young person with this nightmare of a condition.

Can I ask what type of symptoms you experience? And do you have any other symptoms besides vulvodynia and your mental state?

I have only just gotten onto a great doctor after a year and a half...and after 12 other doctors telling me it was all in my head and needed antidepressants. It turns out I have an EXTREMELY rare hormone imbalance, one that goes undetected unless you pay to get a special blood test done. I am in the midst of other tests to put the pieces of the puzzle together so I can't say I'm cured yet, but its a great start after a year and a half, and $8000 down the drain on treatment that hasn't worked.

Have you seen a Gynecologist that specialises in vulva disorders?


Don't give up. Sad no one should have to live with this.

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Re: New here/Advice about life with vulvodynia

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