New User name, not new to the board

[Linds_1989]

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.

[Violet M]

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

[Linds_1989]

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?

[Violet M]

No, it's not a steroid. It's amniotic fluid and is regulated the FDA. The mechanism of action is that It is believed that the exosomes, tiny micro-vesicles found in the amniotic fluid, release micro RNA’s (miRNA) that target and mediate pain following injury or disease. http://www.pudendalhope.info/node/112/

According to what Dr. J told me in the phone conversation, a patient would be an ideal candidate for a therapeutic amniotic allograft injection if there exists tenderness along the course of the nerve at Alcock’s canal. Do you know if you experienced that in any of your previous pelvic exams?

Violet

[Linds_1989]

Violet, I hurt all through my vagina,left and right pn and thighs,sometimes legs. I'm not sure where the alcocks canal is on the body to know if I have tenderness there.

[Violet M]

Alcock's canal runs between some muscles that make up the walls of the vagina. Your PT should be able to press along that canal and at the ischial spine in the walls of the vagina and see if you have tenderness there. You can read more about the anatomy at the following link: http://www.pudendalhope.info/node/13

Violet

[Linds_1989]

I'm pretty sure it hurts all through there. I gave up on PTs.

[Violet M]

I gave up on PT before surgery but but my PT was extremely helpful in the diagnosis. So when you say you gave up on PT's, were you able to at least get a good PT evaluation to help you figure out the source of your pain?

Violet

[Linds_1989]

Well it was Dr. Echenberg in PA who officially diagnosed it based on his touch and feel methods. During exams.

[Violet M]

Well, he is certainly experienced and he should be able to give you an educated diagnosis. What about your PT's though -- are they trained specifically in treating PN?

Violet