A sad day. Brave PGAD sufferer ends her life.

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A sad day. Brave PGAD sufferer ends her life.

Postby Sydneysufferer » Wed Dec 05, 2012 12:50 am

http://www.tampabay.com/news/health/med ... 264559.ece

Gretchen Molannen recently participated in a story about PGAD with Tampa Bay Times. It was the first truly compassionate story about PGAD I have read and I, along with many others, was very proud of Gretchen for telling her story.

Unfortunately she was not treated with much compassion from a disability judge who rejected her application for disability benefits. She couldn't afford to see doctors for tests or treatments and those she did see didn't know how to help her.

For 16 years Gretchen suffered. 16 years too long. But it should not have ended this way.

I have so much faith in the doctors already working with PN/PNE/PGAD patients and a lot of hope that others will get on board and make information about, and help for, these conditions more widespread.

My thoughts and prayers go out to Gretchen and others who are suffering right 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 » Wed Dec 05, 2012 1:39 am

This is a devastating sad, sad tale. So unnecessary! I just wish the clock could be turned back to help this lady. This world can be such a cruel place. This should not happen, poor girl.
Thank you for sharing Sydney, but what a waste. So upsetting, her family her friends . . . .sad news altogether!
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: A sad day. Brave PGAD sufferer ends her life.

Postby Violet M » Wed Dec 05, 2012 6:29 am

Thank you for posting this story. It's pretty depressing and incredibly sad though. I just hope that the judge who denied her benefits will get some feedback on this.

My message to any person with PGAD who is reading this story and is contemplating suicide is to please explore all of your options before contemplating ending your life. There was a time I did not want to live before I knew what my diagnosis was but now I am 99% cured of PGAD. You have options. Please talk to me if you need help -- send me a private message and I can give you information on treatments that have helped other PGAD sufferers.

If you are ready to give up on life, please seek professional advice or go to the ER -- there are people out there who can help you.

Violet
Last edited by Violet M on Thu Dec 06, 2012 5:35 am, edited 1 time in total.
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: A sad day. Brave PGAD sufferer ends her life.

Postby Laura » Wed Dec 05, 2012 7:01 am

This is so sad. :(
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby helenlegs 11 » Wed Dec 05, 2012 2:02 pm

Well said Violet,
Thank goodness we do have HOPE and the help and advice everyone here offers. I would say the same as you, anyone, ANYONE who is feeling remotely suicidal, down or depressed can message me any time. If I can help I certainly will.
We are all here to help one another, as much of the rest of society still needs to do some catching up to 'get it,' as we all know too well.
We also do need everyones help to get pelvic nerve and PN problems recognised and more mainstream.
Maybe people who haven't signed THE PETITION yet could do so. Even again? with a different e mail address?? Please :)
http://www.ipetitions.com/petition/requ ... g-for-all/
Take good care all,
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: A sad day. Brave PGAD sufferer ends her life.

Postby Anne smith » Wed Dec 05, 2012 10:27 pm

Oh dear
This is what we don't want to hear! Because we are busy working our way around this condition! Yes I do agree whole heartedly that the physicians that let her down need to know this!! I do a bad haircut(I hope not) and my client will let me know and I will move heaven and earth to make it right! Sadly our clinicians don't have that conscious
This without dought is a condition that being neurological and not entirely understood has no kudos in comparison of (curing aids) At times my own partner questions if my problem really exists! My god we have to be tough! And this poor lady was not tough for long enough!! Shame on you medical profession who swore an oath of paciant care after qualifying .
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby Sydneysufferer » Thu Dec 06, 2012 2:02 am

It's really heartbreaking stuff. I have told those close to me that I have PGAD symptoms and they are so understanding. But it's some members of the wider community who make opening up about it really hard.
A few women have talked to the media in a bid to spread awareness (i.e. it's more common than we think, that it's a hideous disorder that needs more research and so forth) but then they become disheartened after being ridiculed or having their story trivialised.
I have tried to talk about it subtly on my facebook page without divulging my own situation and even so-called friends make horrible jokes about it. The truth of the matter is, the more people talk about PGAD or other "below the belt" conditions, the more the rest of the world will see that more needs to be done. Unfortunately it's so hard to open up outside of speaking to your own doctor.
Some of the gals in the PGAD group are bravely talking to media in the hope that what happened to Gretchen will not happen to another woman. They want to spread awareness and get support from the public and health professionals. I take my hat off to them.
I'm still brainstorming ways I can help here in Australia. I trained as a journalist and wish to submit a piece for publication but I need to make sure I tell it right the first time and in a way that gets the right kind of attention.
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.
Sydneysufferer
 
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Joined: Mon Apr 23, 2012 3:39 am

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

Postby lightmail » Thu Dec 06, 2012 2:15 am

There is the reporters e-mail at the bottom of story. Let's all send an e-mail to this person. Maybe she will get our story out there. This is a great opportunity for us..Please...Robert
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby HerMajesty » Thu Dec 06, 2012 5:51 am

R.I.P. Horrible and so unnecessary. Not only do Doctors and beaurocrats not believe us; they don't even doubt their omnipotence enough to do a simple Google search and find out that Neurologists who are smarter than them know this is real. Our symptoms would be humiliating to admit even if the response were respectful; and what Gretchen got were jokes and accusations of deceit. Thank you Violet for describing your success: Please continue to repeat your success story often; it might be seen by somebody else who is close to the edge.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: A sad day. Brave PGAD sufferer ends her life.

Postby Violet M » Thu Dec 06, 2012 6:18 am

SydneyS, I haven't been on the PGAD forum for years so I don't know what the climate is over there towards women who believe their PGAD is caused by pudendal nerve entrapment. Back when I was over there I felt like one of the lone voices for women whose PGAD was caused by PNE and there was an uncomfortable amount of ridicule towards people who sought treatments that some members of the group did not approve of -- such as PNE surgery. I guess even within the PGAD support group community I felt very alone. The medical community had no clue -- I was deemed a psychiatric case.

I agree with you that if you submit your story for publication that it needs to be done very carefully. I wish you luck on this. Someday I would love to see a story that focuses on the medical aspects of this condition as much as the emotional aspects. Gretchen's story was well done but I saw no mention whatsoever of the medical aspects of the condition. That aspect always seems to be shrouded in mystery. No mystery in my case -- it was clearly a neuropathy caused by a damaged/entrapped nerve. That may not be the case for everyone with PGAD -- but I would not even get near the media unless the medical aspects were the primary focus.

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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