Health Organization for Pudendal Education

No, I didn't, but I remember a previous forum member who did.

Violet

Hi everyone,

In case you missed it, there is an important online survey which is running for women who have symptoms of persistent genital arousal. Please participate, as you will be contributing to meaning research on the disorder; this survey runs until March 2016.

http://pgad.sexlab.ca/

There is also a short video done by Robyn Jackowich, one of the researchers, where she explains the purpose of the study:
https://www.youtube.com/watch?v=mNDuaq8 ... e=youtu.be

Make you voice heard. You can make a difference!

I have had pgad on and off for almost 2 years. I can go 4months in between a flare but then it's back. PT helped me at the beginning so I'm going to try again. I am also starting a med for overactive bladder tonight. It usually seems like my bladder is involved. Mine is usually felt above the pubic bone. If I press on that area where my bladder is underneath I can feel the sensitivity/arousal of these nerves. My mind is also involved. The more I worry about it occurring the more likely it is to occur. Does anyone know anyone in the Nashville, TN area that treats pgad?

Hi Purple,

Sorry, I don't know any TN physicians for this but you could try calling a PT in Tennessee and they might be able to direct you to a physician. http://www.pudendalhope.info/node/63#TN
Maybe some of our other members will also be able to help you.

The pudendal nerve innervates the bladder sphincter which is one possible reason you feel bladder involvement but there are also other nerves in the area so hopefully you will be able to get this sorted out.

Violet

Hi Purple01,

On another healthcare provider list, I found the name of a pharmacist who is familiar with PGAD. It might be worth contacting her to see if certain medications are usually prescribed. I too had problems with my bladder soon after my symptoms started. Anyway, maybe this pharmacist has contacts, either doctors or PTs familiar with the disorder in your area:

Candace Brown, MSN, PHARMD, BCPP
Center for Sexual Health and Wellness
7800 Wolf Trail Cove
Germantown, TN 38138
901.682.9222 cbrown@whsobgyn.com

Please take the time to participate in an important PGAD Survey for Women who have symptoms: http://pgad.sexlab.ca/
Finally, there are some researchers interested in helping us. In the above posts, there are Youtube videos links explaining the purpose of this study. Please participate and help us all find better treatment for this disorder.

Hope you start improving soon.

My quality of life is improving. Positivity, daily PT (Amy Stein: Healing Pelvic Pain), and cardio, weekly intense PT (cold laser, ultrasound, muscle rolling, trigger point therapy), and adopting an IC diet have helped!

I accept my fibro (even in my pelvic floor), lupus/CTD...all of it. Each day, I live a better life.

I had an amazing Skype session with Dr. Echenberg as well.

I'm considering starting Lexapro, to cope with anxiety. I never expected PFD, PN...I have bad dreams and anxiety in the morning. My brain says "what's next?". This is probably normal and part of the healing process. I'm glad that I found this forum. It's helped to see, I'm not alone. Thank you all for your tips, book/website info, and just for sharing your stories. I was scared when my symptoms first started. Now, I'm empowered and active in my recovery.

Almost forgot, I ordered a DVD set from paindownthere.org (PT for PFD & PN), Desert Harvest aloe vera supplements (for my IC), and I'm getting an herbal tea made. Fingers crossed, this will enhance my recovery too.

Website correction: paindownthere.com

Hi Ruth,

Glad to hear you are figuring out ways to cope. I wish you all the best with your treatments.

Violet

Guys, im very new to this and need help with the following information as i believe i had undiagnosed pgad symptons, been feeling them for a few days and was diagnoywith vulvadynia 1 week ago, i cant afford the go bk private for treatment also so i will need to educate my gp

1) what Do you guys usually take for the spasms and pain
2) what topical cream do nost use and when?
3) what medication do you usually use at night to distract from the ache?
4) what can i take to my gp to provide more information
Thanks guys

Anisha_d87 wrote: 1) what Do you guys usually take for the spasms and pain
2) what topical cream do nost use and when?
3) what medication do you usually use at night to distract from the ache?
4) what can i take to my gp to provide more information

1. I used a lot of ice, including frozen ice balloons inserted vaginally. You can use a mixture of alcohol and water in the balloons to make them less intense. Or you can slide them in and out several times until you get used to the cold. Some people have good results with valium suppositories or valium pills inserted vaginally. B&O suppositories are good but are considered a temporary solution because you can't take them long term.

2. I found extra-strength vagisil more helpful than anything else I tried. If you want something to use internally you could get a prescription for 5% lidocaine or emla cream. Some people use creams with ketamine or gabapentin. I never tried them.

3. This link http://www.pudendalhope.info/node/20 has a list of medications people have found helpful. I used opioids for pain, clonazepam for spams (and to help me sleep), and an SSRI antidepressant to dampen symptoms of PGAD and urinary frequency. Some people find lyrica helpful. I did not try it because it became available after I was already starting to get well. For pain and PGAD, I know one person who has used suboxone successfully for several years. Suboxone has an opiod and naloxone in it so you aren't as likely to become tolerant to it.

4. You can go to pubmed and print out article abstracts on the topic of pudendal neuralgia or persistent genital arousal disorder. You are also welcome to print out anything from the pudendalhope.org website and take it to your physician. For PGAD, you can print out this newsletter.http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Hopefully these symptoms are temporary for you.

Take care,

Violet