National Vulvodynia Association seeks PGAD volunteers

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National Vulvodynia Association seeks PGAD volunteers

Postby Lernica » Thu Dec 13, 2012 8:58 pm

The National Vulvodynia Association recently sent the following message to its members:

The NVA was contacted by a Newsweek reporter who is writing an article on Persistent Genital Arousal Disorder (PGAD). She would like to feature the stories of women who suffer from the condition in her piece. (Interviews can be anonymous if preferred.) If you suffer from PGAD and are interested in speaking with her, please send a brief email to chris@nva.org.

In your response, please briefly answer these questions.

How did you discover that you had PGAD and how long have you been afflicted with the condition?

Are you involved in any support groups for women dealing with PGAD and other forms of chronic genital/pelvic pain?

It is only natural that such a condition would cause psychological and emotional distress. How have you dealt with this and do you find that doctors have been sympathetic to your plight?

Last week's tragic news that a woman in Florida suffering from PGAD committed suicide draws media attention to the disorder, but do you think that it will get the medical community to pay more attention to PGAD?

Have you or other women that you know with PGAD ever felt similarly despondent? How does one deal with those feelings?

Do you grant the NVA permission to forward your email to this reporter?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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Re: National Vulvodynia Association seeks PGAD volunteers

Postby helenlegs 11 » Fri Dec 14, 2012 12:43 am

Thanks for this Lernica.
I hope that EVERYONE with any PGAD responds. Although the P stands for persistent, this does not mean continuous.
Do you think anyone who experiences this problem which is possibly more like unwarranted or non sexual arousal syndrome as part of PN should get in touch? even if it is not their most prominent PN issue.
I realise that the lady who had featured in the article did have a dreadful PGAD and from what I understand little pain but I would think that your contact will also be interested in those where PGAD is part of their PN problem.
It would be great if people did become more aware of pudendal neuralgia often causing this problem and I'm sure this article will be able to spread that awareness.
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.
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Re: National Vulvodynia Association seeks PGAD volunteers

Postby Lernica » Fri Dec 14, 2012 2:41 am

I actually think that it would be great if a spokesperson from the PudendalHope Board would get in touch with the reporter (I'm not naming names, but of course Violet comes to mind!) I didn't read anything about the pudendal nerve in the recent coverage of the tragic suicide, so getting that fact on the record could do a great service to some PGAD sufferers.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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Re: National Vulvodynia Association seeks PGAD volunteers

Postby Violet M » Fri Dec 14, 2012 5:43 am

Lernica, I will definitely contact them. We need some positive stories about women who had good outcomes. Thanks for posting the info.

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.
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Re: National Vulvodynia Association seeks PGAD volunteers

Postby helenlegs 11 » Sun Dec 16, 2012 3:42 am

I did e mail the journalist who did the piece on the lady in question. Just to point anyone she may have come into contact with, in the direction of HOPE if they needed additional help and support. (who doesn't)
The journalist does seem to be taking a good deal of interest which is fantastic of course but agreed Lernica, the lack of PN mention, needs to be addressed. I would hope that people here do get in touch and tell the whole pudendal, PGAD story to put this right.
It is a good opportunity, but such a shame that it has to be on the back of such a tragic story.
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.
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Re: National Vulvodynia Association seeks PGAD volunteers

Postby catherine a » Sat Feb 16, 2013 12:18 am

I volunteered to be part of this National Vulvodynia Association study. I received an email back saying that unfortunately as I do not reside in the USA I can't be included.

Looks like they are are only looking for people in the US.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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