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» Vulvadynia
Yesterday at 11:53 pm by Linda Williams

» 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

» Constant pain, I want to die.
Wed Jul 19, 2017 10:55 pm by jungleclover

» What is Vulvodynia?
Wed Jul 19, 2017 10:42 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

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

» Surgery Success - Still early days, but going well so far!
Sun Jul 16, 2017 8:42 pm by sarahjane1332343

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 …

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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.

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: 20

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

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


New Vulvodynia Support Group in Dallas area

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New Vulvodynia Support Group in Dallas area

Post  Debbie627 on Mon Jul 30, 2012 8:59 pm

When I was officially diagnosed with vulvodynia 2 years ago, I had no one to talk to except my doctor. I tried to discuss and find answers through the various message boards, but found them to be too slow and in some cases outdated. I have 30 years in the computer industry and have pretty good analytical skills, so I set out on a journey to determine the root cause of my condition. I succeeded! Now I feel compelled to work with other women who have this condition to offer some hope, help and comfort.

As such I am starting up a new support group here in the Dallas area for women to actually meet face to face in a nurturing environment to discuss this condition. I believe through an open exchange of ideas and education, we all have the power to find the answers. We know the doctors don't have the answers...it's up to us.

If you live in the area and are interested in participating, please let me know.

Debbie

Debbie627

Posts : 12
Join date : 2012-07-10
Location : Dallas TX

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Seeking help in Dallas Area

Post  rl2091 on Thu Jan 10, 2013 5:25 pm

Debbie,

I also live in the Dallas area (Lucas/Allen), to be exact. I have also worked in IT for almost 30 years. I've been struggling with vulvodynia for almost 2 years. My ob/gyn struggled with it and finally sent me to a physiologist, telling me that we have to fix what's 'up hear' (pointing to my head) before we can fix what's going on down there. I then went to a doctor at UTSouthwestern, which only really sent me to physical thearpy. I've now have gone to a 3rd doctor, which did order blood tests (after my urging) that showed my free testosterone is below normal and my SHBG is way high. However, this doctor knows that is not good, but has no idea what to prescribe. I would like to know how you got help and what doctor you visited.

I'm desperate!!!!!!!!!
Roseann

rl2091

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Re: New Vulvodynia Support Group in Dallas area

Post  C'smom on Sun Aug 04, 2013 5:40 pm

We have also seen several doctors.  (Locally & out of state)  Last week saw a new dr.  I have some hope again.  She seemed to have a few more tools in her tool chest.  If nothing else works, we may fly to New York for a consult.  Would be interested in visiting with others !
We live in the North Dallas area. I am close to Allen, McKinney, Frisco and Plano.

C'smom

Posts : 1
Join date : 2013-08-04
Location : texas

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i live in abilene

Post  dewayned on Tue Nov 05, 2013 5:39 pm

i live in abilene , i want to find someone who knows what the heck they are doing , but no one in dallas seems to take my insurance . i found a place in midland a texas tech center where they are specialist in vulvodynia. i have an appt but not till jan, i have been dealing with this for almost 7 yrs and now my 15 yr old has it .... i am so sad for her . i pray it goes away. good luck starting a group . wish i lived closer .

dewayned

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Re: New Vulvodynia Support Group in Dallas area

Post  Alana3 on Tue Nov 05, 2013 6:06 pm

Sometimes you gotta go wherever even if ur insurance doesnt cover. My doc didn't accept my insurance but I'm cured don't let that good you back from a potential fix

Alana3

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Join date : 2012-09-25

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interested

Post  Willabel on Wed Feb 05, 2014 10:09 pm

Hi, I am Dallas, and interested in joining the group, thank you

Willabel

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Join date : 2014-02-05

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Still here for you

Post  Debbie627 on Wed Feb 08, 2017 5:22 am

I have to apologize to all of you. After posting my message about starting a support group in the Dallas area, I stopped looking at this board when I didn't receive any immediate responses. Please know I am still here for you and wanting to do this. Contact me directly at ddc627@gmail.com. We can meet and share experiences. I can share with you what I did and hopefully help you as well.

Debbie627

Posts : 12
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Location : Dallas TX

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Re: New Vulvodynia Support Group in Dallas area

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