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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


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

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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

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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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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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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

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Location : Dallas TX

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Re: New Vulvodynia Support Group in Dallas area

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