PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
helpmeplease2013
Posts: 15
Joined: Wed Jan 30, 2013 1:55 am

Re: PGAD - persistent genital arousal disorder

Post by helpmeplease2013 »

Hi Everyone,

I have read some info in other topics, but I looking for anyone's opinions/referrals. Does anyone know of any Doctors that deal with PGAD in the USA -Doctors people have had success with? I am desperate, I will go anywhere. If someone has been to a Doctor that knows PGAD and what to do -please, please send me their info.

Thank you so much,

Jenny
Laurina
Posts: 62
Joined: Tue Dec 13, 2011 12:24 am

Re: PGAD - persistent genital arousal disorder

Post by Laurina »

Jenny,
I have several contacts throughout the US - doctors, physiotherapists who have treated PGAD with success. Could you share close to which major cities do you live? Would you be willing to travel anywheres in the US?
L
helpmeplease2013
Posts: 15
Joined: Wed Jan 30, 2013 1:55 am

Re: PGAD - persistent genital arousal disorder

Post by helpmeplease2013 »

Hello Laurina,

Thank you for your reply, I appreciate it very much. I live in Canada but will travel anywhere in the US, as I really need help. I will take all the information you have!!

Thanks so much Laurina.

Jenny
Laurina
Posts: 62
Joined: Tue Dec 13, 2011 12:24 am

Re: PGAD - persistent genital arousal disorder

Post by Laurina »

Hi Jenny,
I also have a list of Canadian providers who have helped patients. It might not be necessary for you to go to the US. I shall send you a private message. Just look above where it says User Control Panel and you should see 1 message next to it.
Laurina
helpmeplease2013
Posts: 15
Joined: Wed Jan 30, 2013 1:55 am

Re: PGAD - persistent genital arousal disorder

Post by helpmeplease2013 »

Laurina, I cannot thank you enough for your response and help.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PGAD - persistent genital arousal disorder

Post by helenlegs 11 »

Hi Jenny,

You could also take a look at the newsletter that Violet has recently added to the home page. It gives such a lot of good info on the topic.

Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Laurina
Posts: 62
Joined: Tue Dec 13, 2011 12:24 am

Re: PGAD - persistent genital arousal disorder

Post by Laurina »

Thanks Helen. That is such an excellent issue of the newsletter, very sensitively done and worth reading!
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Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: PGAD - persistent genital arousal disorder

Post by Violet M »

Laurina,

I would be interested to know of providers in Canada who treat PGAD -- in case we have Canadians asking for help in the future.

Thanks,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: PGAD - persistent genital arousal disorder

Post by DoubleEdgedSword »

Happs, I'm glad that your mixture of meds is working for you. Hope you continue to get better. It's nice to see that some folks do improve. Please let us know how you're getting on.. :)

Jenny, Dr G and one of his residents prescribed the cream for me. I've just started using it (I'm stubborn about 'giving in' to my pain!), and it really helps a lot, and works quickly too. Within a few minutes of applying it, it starts to take effect.

He also suggested I go up to 90mg of Cymbalta from 60mg. I was given that by my own doc last year for depression, and it's made a difference. Increasing the dosage hasn't made my side effects much worse either, so I'm grateful I have these two meds in my arsenal to help with the pain!

Dr G also suggested I give Topamax a try, but since I'm diabetic and there are drug interactions with what I'm already taking, I decided not to pursue that option. He's reasonable about listening to reasons why I didn't want to try it, so that makes it easier for me not to stress about my decisions. :)

I'll be seeing Dr G again on Friday. Perhaps he can let me know what, if anything, would be contributing to the pain I'm having, and let me know if he still thinks I'm a good candidate for his botox study.. They've ruled out impingement and Tarlov cysts.

As far as why stress seems to make PGAD worse, I don't know for sure, but we all 'hold' our tension somewhere. For me, it's my jaw. I don't grind my teeth, but clench them, especially since one of the strange side effects of Cymbalta is excessive yawning. If I don't clench, I start to yawn!

I also hold stress in my neck and shoulders, as many people do, and also in my PC muscles.. My current bout of PGAD started after a traumatic dental appointment 2 years ago. Learning to get rid of the stress is a work in progress, but since my arousal has become more manageable, I find the techniques I'm learning are more effective. I'm hoping one day that my PGAD will disappear again, as it did the first two times I had it..
On the road of discovery to see what is causing my PGAD.
ZPC2THLgate
Posts: 3
Joined: Mon Jul 01, 2013 10:27 am

Re: PGAD - persistent genital arousal disorder

Post by ZPC2THLgate »

I had a few similarities but not sure I can explain the reasons.





























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