Embarassing bodies TV programme

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Embarassing bodies TV programme

Post by Karyn »

Ladies,
I live in the US, so I don't have the ability to watch Embarrassing Bodies. We have something similar called "Hard to diagnose", or something like that. I may look further into it, as it would fabulous to get the word out about our condition, world-wide!
helenlegs 11 wrote:I have tried in the past to get 'our story' into the public domain by writing to daytime TV shows but only got a generic thankyou and nothing else
How surprising! Maybe including our new HOPE letter would be helpful? I mean, what could possibly be more embarrassing than all that comes with our condition? :shock: Affects bowels, bladder, genitalia, can't sit, etc ....
Best wishes and warmest regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Embarassing bodies TV programme

Post by helenlegs 11 »

jennyp wrote: and I am encouraged by the fact the programme now does "living with incurable conditions" rather than just the diagnosis side.

Anyone think one of the UK PN consultants would do a piece ???
Jenny
That sounds like they are open to more than the original idea then, so thats good. I'm sure we can 'manufacture' something if the response is positive.
Think I will ask Dr Greenslade how the 'Bristol Team' happened and what sparked the interest in PN that might be a good story too ? ? Speaking to him on the 6th.

Precisley Karyn, If these programmes exist we should try and make use of them, otherwise getter the word out there seems like an insurmountable task.
Take 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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little mo
Posts: 55
Joined: Tue Feb 01, 2011 3:09 pm

Re: Embarassing bodies TV programme

Post by little mo »

Hello Helen
I have applied twice to embarrasing bodies. the application form was three pages amd took almost 2hours to compleate.
I was attracted to appling because they promise if they accept you then you will be cured.....I have sent many emails also and have asked for the place that might have sent and I would be willing to pay the fee..but have not heard back from them...I don't want to despair you, and I wish you very much luck/...on the last travelling clinic they were a few miles from where I live in Kent...I could have travelled to them....but alas no .I wish you good luck in this case go for it don't give up ..just wanted you to not get too excited and then let down love from little mo
xxx
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