New Vulvodynia Support Group in Dallas area

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I tried to discuss and find answers through the various message boards, but found them to be too slow and in some cases outdated.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

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

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.

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 .

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

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

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.