As a nurse, I have been asking every doctor I work with if they have experienced PN in their careers. Only 2/10 had even heard of it. Even my experienced OB had not. All the stars have certainly aligned for us to be unfortunate enough to be afflicted.
Love to all
cari
WE ARE A RARE BREED
WE ARE A RARE BREED
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: WE ARE A RARE BREED
Hi Cari,
Hugs to you from another nurse. I have no clue how you get through 12 hour shifts with PN -- you are pretty amazing!
I had to go through a few docs before I finally found one who knew about PN and it was actually a PT who first diagnosed me. We just have to keep trying to get the word out, eh?
Violet
Hugs to you from another nurse. I have no clue how you get through 12 hour shifts with PN -- you are pretty amazing!
I had to go through a few docs before I finally found one who knew about PN and it was actually a PT who first diagnosed me. We just have to keep trying to get the word out, eh?
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.
Re: WE ARE A RARE BREED
Sunil - out of all of the posts you've written, this was the very best one. Thank you so much for sharing your logical and inspiring thoughts with us!sunil wrote:I have written topics in here about hope and facing the truth but what else can we do? This is life and how people are, we can not change them but we can change ourselves and that's where hope starts.
Hi Cari,
When I first began to research my symptoms, PN(E) was labeled as "a rare condition". Since finding this forum and communicating with other Hero's all over the world, I've come to the conclusion that we are not a rare breed. It's the doctors who are aware of our condition and treat it that are rare.
Warmest of 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.
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: WE ARE A RARE BREED
So true Karyn, I don't want every doctor to be an expert, just to be aware would be enough, then they could refer to the experts. One dayKaryn wrote: I've come to the conclusion that we are not a rare breed. It's the doctors who are aware of our condition and treat it that are rare.
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.
Re: WE ARE A RARE BREED
Yes I agree with you, we are a rare breed and seem to be some of the unfortunate few who have this horrible condition, but on the other hand we are still lucky that we live in these times with this condition. Even though this condition is often misdiagnosed, and we still do not have effective drugs to deal with this type of pain; we still are better off then people in the old days. I'm reading this book and this gal loves riding her horse and I think omg what did people do such as cowboys if they got pn? Or maybe people didn't get this condition then. Maybe bodies were tougher than because they were less sedentary compared with people now. Who knows, just some of my thoughts.