New User name, not new to the board

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New User name, not new to the board

Postby Linds_1989 » Tue Nov 14, 2017 8:16 am

Hi, guys this is the 3rd time I've been on here with a new user name. I have been in here off and on for the last 2 years but when I take a break from coming in here I always forget my old username.

Anyway, I'm Lindsey and I have a question. It seems like since I developed PN or what seems to be PN 3 years ago it has gotten bad quickly over time. Is it normal for thungs to progress like that or does it seem to be slower for other people or their pain kind of level out?

So basically I had/have bladder pressure. Probably from my Lyme disease. So I had a cyatoscopy back in 2014. Gad some labia ringing on the left. Had polyps removed/burned from the neck of bladder..then began more pn like symptoms. Then a month later genital femoral hernia repair. Then tingles in my thighs began. Yes, now I know and have heard the dangers of mesh. I'm not exactly sure what caused what but I do believe the cyatoscopy is what originally messed with my nerves.

Make a long story short... I've tried tons if nerve meds,pt, blocks, and since its late I cant think of everything ive tried but its been a lot.
But now,I can't sit or stand for more than 3 mins. I cant walk well and if u walk/sit or stand too much I flare. Lately I have had a harder time walking. I wish I knew what to try next. Drs suspect that Lyme disease complicate my case adding more inflamation and such. But my thighs feel heavy and tight. Feels like its stemming from the PN. And I have the PN on the left and right side. So I have all sorts of female pain. I try to do what I can but it's hard.
Linds_1989
 
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Re: New User name, not new to the board

Postby Violet M » Wed Nov 15, 2017 6:00 am

Hi Lindsey,

PN can develop rapidly or slowly. Some people have pain that levels out, some people have pain that progresses. Do you have a pretty definite diagnosis of PN based on your nerve block results, clinical exam, PT evaluation, etc.?

Have you read the interview with Dr. Jarnagin on the homepage at pudendalhope.org? I wonder if the amniotic fluid injection would help your nerve heal from lyme disease damage.

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: New User name, not new to the board

Postby Linds_1989 » Fri Nov 17, 2017 7:13 am

Hey Violet,
I was diagnosed with it 2 years ago by Dr. Echenberg in Pensylvania. I have seen PTs who are familiar with PN but they never said you have it like Dr. E did. At the time he said it was mild but its changed a lot since then. I personally think my urethra has been poked too much from Cystocopies and what not and that is what caused it. Nerve blocks didn't work on me. Did nothing when Dr. E did it. And when my obgyn did it wasn't called a block, ibforget what he called it. Anyway, it only gave it a slight different feeling. Still had pressure in there. And it didjt touch the sensitivity around clitorus and that general area. I was actually going to ask about Amniotic injectable Allograft. Is it a steroid by chance? What makes it different from other nerve blocks?
Linds_1989
 
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