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PGAD treatment in USA

Posted: Tue Jun 18, 2013 5:11 pm
by helpmeplease2013
Hi there,

I have had PGAD for 5 years and am looking for someone who has successfully treated it. If anyone has any information, I would greatly appreciate it.

Thank you,

Jenny

Re: PGAD treatment in USA

Posted: Sun Jun 23, 2013 1:09 am
by Violet M
Dr. Beco and Dr. Bautrant have treated it successfully surgically. They are both in Europe though. I am essentially cured of PGAD after having surgery from Dr. Bautrant.

I know two people who I have communicated with by phone or email in the last year who had surgery from Hibner and one is cured of PGAD although that was not her primary symptom. It had essentially gone away after pelvic floor PT before surgery. The other person I have spoken with is not cured but she now has it only about once a month for a short period (after certain activities) instead of constantly.

Violet

Re: PGAD treatment in USA

Posted: Thu Apr 10, 2014 7:55 am
by Nicwill7
Hi Violet,
I have pgad and its been a torturous ride for the past 2 years.
For some reason when I was hit with this , it also like disconnected me in the sense that it is very hard to achieve orgasm.. it takes a long time and is an arduous process. I wonder if you know of anyone that had this same experience? PGAD coming on with the disconnection as well? Before PGAD, it was so easy and automatic... so you can imagine how its a double edged sword when the pgad comes on strong and I need relief and then its like i have to enter into a marathon with myself. :/
Secondly, do you think surgery could help me even if its more the brain that caused this over having the pudental nerve entrapment? ( I think that is what its called).
Any information on anything that can push me closer to a cure, would be greatly appreciated.
Love,
Nicole

Re: PGAD treatment in USA

Posted: Thu Apr 10, 2014 10:12 am
by Rosemary
This article was in one of the papers here in the UK yesterday which is about treatment in the US.

http://www.dailymail.co.uk/health/artic ... oused.html

Rosemary

Re: PGAD treatment in USA

Posted: Thu Apr 17, 2014 11:33 pm
by Violet M
Hi Nicole,

You might want to check out our newsletter on PGAD at this link: http://www.pudendalhope.info/sites/defa ... ne2013.pdf

If your PGAD originates in the brain pudendal nerve release surgery won't help. The trick is to figure out what is causing your PGAD. The history and physical exam are very important in the diagnosis of pudendal nueralgia and pudendal nerve entrapment so it's important to see a physician who is knowledgeable about pudendal neuralgia and knows the correct questions to ask, how to do the exam, and what diagnostic procedures to try. I don't know much about PGAD that originates in the brain so I can't tell you how that is diagnosed but PGAD due to pudendal neuralgia occurs in as many as about 1/4 of PN patients based on Dr. Beco's experience.

You might also want to find a pelvic floor physical therapist who can check your pelvis for possible musculoskeletal anomalies and pelvic floor tension.

Hope you can get this sorted out find some treatments that help.

Best,

Violet