A sad day. Brave PGAD sufferer ends her life.

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Re: A sad day. Brave PGAD sufferer ends her life.

Postby Sydneysufferer » Sun Dec 16, 2012 11:13 pm

Voilet, I am sending you a PM now...
26yo/F/Australia
March 2012 - PN symptoms after long period sitting - PGAD and urinary frequency.
Ceased sitting - total symptom relief after 5 months
April 2012 - Initial palpation of pudendal nerve on examination led to some rectal pain.
May 2012 - MRI: entrapped left pudendal nerve superior to ischial spine and narrowed interligamentous space on right hand side w/ no definite entrapment.
October 2012 - Recommenced sitting and symptoms returned.
Exploring clinical options here and overseas.
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby helenlegs 11 » Mon Dec 17, 2012 12:21 am

There is Lernica's post
viewtopic.php?f=3&t=4180
which may link in very well with this one if anyone does want to help raise more attention to PGAD but didn't want to 'go it alone'.
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: A sad day. Brave PGAD sufferer ends her life.

Postby DoubleEdgedSword » Wed Dec 26, 2012 9:21 am

I sent my info to the NVA. Hopefully we can raise awareness about this and have it recognized as a real medical disorder, much like priaprism is in men.

I suspect that it's far under-reported because of the embarrassing nature of it, and it's a big step to take to let your doctor know about it.

Up until now, I feel the media has 'sensationalized' PGAD, making the women who suffer feel like freaks, while giving the condition the wrong kind of attention. The episode of 'Grey's Anatomy' that dealt with PGAD was particularly annoying, because it didn't explain any options other than surgery, and made it seem like that was going to cure the woman, when we know it's not always the case.

The consequences of having a disorder that you're too embarrassed to talk to your doctors about, of not knowing which options to try, of not knowing what might work for you and what might not, can be pretty daunting. Not recognizing it as a disability when people can no longer work, sit, carry on a 'normal' lifestyle, is just plain wrong. No wonder people get depressed enough to consider suicide as the only way out. Feeling alone or abandoned, like 'the system' has let you down, while in this situation could push some in that direction.

I hope that this woman's death will not be in vain, and someday soon those who suffer with PGAD will have a support system that actually works.. It's just so sad she saw this as the only solution to her problem. :(
On the road of discovery to see what is causing my PGAD.
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby catherine a » Thu Dec 27, 2012 2:03 pm

Hi Sydney Sufferer,

We are currently doing an article for Fairfax Media. Written by Bettina Arndt. It'll be in the Melbourne Age and Sydney Morning Herald. I am not featured myself as she is featuring women who have not been in the media before. (I've had articles in the Woman's Day and The West Australian.) One member here, Ness will be featured. We are hoping it will progress to TV once the story gets out in early January. 2013. Will keep you informed. Don't know who the other women are. hopefully they will learn of HOPE website and join up.

Catherine (WA)
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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Re: A sad day. Brave PGAD sufferer ends her life.

Postby catherine a » Thu Dec 27, 2012 2:16 pm

I posted this previously on News & updates. http://www.abc.net.au/catalyst/stories/3474801.htm (Australian Documentary) It's a start but we have a long way to go to get this recognised in all Med. schools around the world.
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.
catherine a
 
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

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