PGAD - persistent genital arousal disorder

[Nesssieee]

Hello all

I was symptom free for 4 weeks!!! It's come back slightly today not too bad but annoying me. I'm so glad for the time I was symptom free. It gives me hope.

Hope all is well with everyone.

[Laurina]

Wonderful news Nesssieee!
Glad that you got a few weeks off! Can you identify what you did to stay well for 4 weeks?
Keep up the progress, even if you get a flare now and then.

[Nesssieee]

Yes it is wonderful news. A sign that my body knows what to do to get better it's back with a vengeance though not so good. My own fault really. I managed to get better by keeping constipation at bay and by doing stretches and the techniques you sent me Laurina. I haven't been very good this week so I think that's the problem. I'll get it back though and stick to it to give my body time to heal.

[Ruth212]

I'm experiencing great personal distress at the moment with my health. I received a dx of connective tissue disease and fibromyalgia. Due to a really significant flare and possible IC, I might have PGAD.

My symptoms began a month ago. During the flare, I would wake up in the mornings feverish, and all of my muscles would be tight and stiff. I experienced nerve pain in my low back, legs, and feet. Next, I had problems voiding, and I started having uncomfortable genital (pain/arousal/urgency) sensations. My pudendal pain appears to increase with other autoimmune flares, and it's more severe during my period.

I just started seeing a pelvic pain PT, and I have an appointment with a urogynecologist. I've also reached out to Dr. Echenberg and his staff.

I am trying my best to cope, but I am scared. I never know what the day will bring. Embracing positivity, faith and family, is my salvation. Please, help with guidance and information. Are there recommended clinicians within the Houston area? Thank you.

[Shaela]

I don't know if the doctors I'm going too are fully informed but all they do is prescribe me medications. I'm really open to try new things. Does anyone know if anyone actually got cured from physical therapy? I did a couple session with my PT its been okay, no traction but i guess i only had a few sessions, im just very skeptical about it. I asked her if anyone with pgad actually got cured from this, she told me a few patients told her it helped them cope with it allot but their pgad still remains but she isn't too sure. Did anyone actually get cured from this here? If so, how? Thank you!

[Laurina]

Hi Shaela,
I know one woman who went to physical therapy for a few months for PGAD and she has been symptom-free for 2 years. She never consulted a doctor about her condition as she lived in a very small town.
Also Stephanie Prendergast and Elizabeth Rummer, two top PTs in the US who treat all kinds of pelvic pain/incontinence issues have explained that they treated PGAD before it had a name. If the patient presents with tight pelvic floor muscles that is what they address first.

[Violet M]

Please, help with guidance and information. Are there recommended clinicians within the Houston area? Thank you.

Hi Ruth,

There are several doctors near Houston who treat people with pudendal neuralgia but
http://www.pudendalhope.info/node/58#TX but I don't know if they are experienced in treating people with PGAD.

You might also want to try seeing a physical therapist who specifically treats pudendal neuralgia patients for an evaluation. http://www.pudendalhope.info/node/63#TX I've heard Fatima Hakeem on that list is good -- hopefully the contact info on our website is still current for her. She may be able to tell you a good physician in the Houston area for treatment and diagnosis.

Dr. Lee Ansell and Dr. Ionnis Skaribas used to treat people with pudendal neuralgia but I don't know if they still do. I think Dr. Kenneth Alo still does.

Violet

[Violet M]

Did anyone actually get cured from this here? If so, how? Thank you!

I'm pretty much cured from PGAD. Used to have it constantly but since I had PNE surgery it has slowly faded away. But I wouldn't recommend that everyone with PGAD go out and have surgery. I think it's important to try conservative therapies including PT and not even consider PNE surgery unless everything points to a nerve entrapment.

Violet

[Ruth212]

Violet and Laurina, thank you both for the feedback. I have appointments this week, with various physicians. If I like them, I will forward their contact information.

I just want to know that this will get better.

Thanks again.

[Shaela]

Hello guys!

Did anyone here develop PGAD after an urinary tract infection? I got it right after it, I'm just wondering if anyone else here did too.