June 13, 2008

Online Support Group for Vulvodynia and Pudendal Neuralgia

I've been trying to drum up enough interest in a local support group, but the general response has been in favor of online meetings: saves money on gas and that way I don't have to buy any cookies for everyone.  

The good news is, there's no reason why this online support group can't include everyone.  I added a chat feature on the right column of my blog to facilitate online meetings.  It's not going to be as natural as it would be in person, but at least we can start building a stronger support network.  

If you're interested in participating in an online support group, please add a comment to this post and let me know.  


Anonymous said...

I would be very interested in an online support group. Sign me up!!!


Val said...

I would definitely be interested in an on-line group. I suffered with this condition for almost ten years before I finally asked my primary care physician for pain pills, mind you, I went to my gynecologist who then sent me to a specialist that I had to pay $2000.00 in cash in order to be seen and he said I was an "easy case" prescribed some estrace and sent me on my way. For a year or so I convinced myself the estrace alone was working even though I would sit in the stall at work when I urinated holding myself and putting cold compresses on/in my vagina with tears in my eyes praying the pain would go away. I even gave my GYN permission to do a biopsy of my majora libia because she was getting disgusted with me since there was no visible cause for my pain and when that came back with nothing I was so, disjected. I went to my primary care doctor who then sent me to a pain specialist and that is when I was diagnosed. I have to learn how to work and live and work with this without it taking over my life because the past ten years I've stayed closed to home since I don't know when the pain will be severe or what will cause it. Any suggestions from women who are going through this will be mor than welcome so, count me in.


a woman in pain said...

Dear Val-

I'm so sorry for your pain and struggle to be diagnosed. Thank you for expressing an interest in the support group.

I will post plans to for the first meeting soon.

Anonymous said...

Hi I left you a comment on another entry but I run a support group in Connecticut. I am in fairfield. We disbanded for the summer. It is kind of tough to rally the troops. Anyway, I was reading some of your entries and I really think you can benefit from what me and a few other girls have done. I will say it requires a huge amount of discipline but it worked for us. Check out my blog. It is Vulvadynia Solution. Let me know if you have any questions. No doctors helped me I had to heal myself. It took a year. It's be 17 months and I am totally pain free! Nothing. I am normal. Thank G-d. I urge you to have an open mind and check out my blog. Good luck. Laura

Judi said...


I'd be interested in participating. What do I need to do?


Julie said...

I'd like to participate in the next one. I hope I'm not too late.

a woman in pain said...

Hi Julie,

Of course you're not too late.

The next meeting is Thursday September 18th at 8:00pm.

Thank you for your interest

Anonymous said...

Hi, I know this is a bit after the fact, but I'm wondering if you still host these online chats. I'm a senior in college and have had this condition since I was seventeen. I've been making my way through your blog all morning and I'm so relieved to find something like this out there. Perhaps you'll have more updates on the support group idea as I keep reading, but please let me know.


Susan said...

Was diagnosed with Pudendal Nerve Neuralgia on 2 Oct, although back in July I was diagnosed with persistant sexual arousal disorder. They seem similar. It affects me every waking moment and makes me want to keep masturbating. Horrible condition. I would value online support and hearing from other people who are going through the same thing.

Anonymous said...

I am from CT and would like some feed back on a group support.