Health Organization for Pudendal Education

Hi friends.
I have learned much from the experience and wisdom of you folks.
My pain issues started with what I thought was IC 5yrs ago, and over time and parade of docs PT, the whole nine yds.
sitting pain developed first in buttocks, thne peri/labia and most recently anal rectal..
I haven't been able to drive for about a year due to sit pain in these areas ...it happens on contact so even a quick errand etc, is out of the question. Over time I noticed peri and now anal pain with standing in one place as well.
My main issue now is horrific rectal/anal pain as soon as I try to sit even to eat. As I walk around the house the rectal pain increases, and I have to lie down. This is a new development.
I had peripheral nerve sugery 4 mos back with no improvement yet . I haven't posted about it as I wanted to give things time to heal first. Now I have this rectal pain, with sitting standing and even walking! Walking had always been fine
My bladder issues are variable , the sitting/standing peri/anal pain is my main concern. I spend alot of time in my bed with ice. I am a wife and mom, and I can't take care of my family, My daily function seems to keep going down.
Pls folks any recommendations for a med or treament I can try. I have a pain mgt doc now but are going slow as my pelvic tighten with many meds making hard to urinate! I have had this occur with many meds so I am afraid to try new ones..
Shortly after I try a med the pelvic flr tends to react but it may be a "mind -body" things (my body reacting to past experience with meds that are anti=cholinergics)
I had heard about a doc in Michigan who is doin interstim to the pn.. I know there are things to try besides the PN surgery. Also Im thinking about rectal suppositories? I just need some relief from this agony.
I feel that all the things Iv'e tried thus far have put my nerve into such trauma that the fibers are firing like crazy..so I want to avoid any more surgery. I'm very scared that my system has gone thru so much pain over 5 yrs esp in the last few months that further interventions will only fire things up more. How can we turn it down and get some function back? much more to tell you but my screen won't let me add more text.. Any suggestions from you great folks would be appreciated!

Your rectal problems are exactly like mine. Makes getting around tough. I mostly am laying down. I have only had this for 4 months, wish i could help, maybe others here can help you. I hope you find relieve soon...Robert

I don't know a huge amount about katamine but this post is worth looking at http://www.pudendalhope.org/forum/viewt ... 1a2#p19182
Do you take any muscle relaxant meds?
Sorry kathy it sounds like you are in a great deal of pain. I hope you can get something to help you and soon.
Hopefully others will have some advice, I am just clutching at straws here but it could be that your muscles have gone into overdrive and things need to be calmed down.What about physio?
Take care
Helen

are you having trouble with constipation

if yes, do whatever necessary to take care of that

constipation is my biggest problem related to the PN damage, and I strongly suspect it will make the symptoms you are describing much worse

likely you are in spasm all the time..if you are not on some kind of muscle relaxant, it probably make sense to try that

feel better!

kathyd wrote:I had peripheral nerve sugery 4 mos back with no improvement yet .

Hi Kathy,
What kind of peripheral nerve surgery? I too had severe anal/rectal spasming and pain. Also felt like I had something stuck up my poop-shoot.
I was never constipated, but my colon just didn't work right. I used to get horrible internal hemmi's and would frequently bleed rectally from all the spasm. I tried various muscle relaxers and anti-spasmodics, to no avail. The only thing that helped me was decompression surgery. This was one of my first symptoms to go away. I had many medical professionals suggest I "eat more fiber" and my problem was a "mind/body thing".
Have you been diagnosed with PN(E)?
Best regards,
Karyn

is it great that the surgery worked for you..lots of folks here with mixed results

I suspect you did have constipation due to the spasms because the spasms alone would not cause bleeding..just the difficulty to pass stool is my guess..also the internal hemis were likely a result of the constipation

anyway, the important thing is that you are relieved from those issues which I know are real life changes

stay well

kathyd,

I have some suppositories from a compounding pharmacy made of Lidocaine/Valium. I use them rectally and they do work well for the pain.

Valium is also a goody for the bladder issues. When the pelvic floor is in spasm, and the nerve is irritated, the bladder doesn't work properly. Valium will help relax those muscles and help you pee easier.

There are other doctors out there doing the neurostimulator to the pudendal (an interventional pain mgmt doc). I found one in Denver who agrees to do it, I am just sticking with physical therapy before I try anything invasive.

I think if you can get your meds sorted out, you will get some relief.

Please let me know if I can help in any way! I've had so many of the same issues, and have two small children to care for. I have had to have babysitters much of the day because all the lifting, bending, reaching etc flare up my nerve.

cari

Yes, Pn Person - "constipation" sounds like a very good explanation. One I've heard many times. Until I informed these various medical professionals I had liquid diarrhea for months and months or super soft stool. Then it was written off as IBS. Constipation is not the only way you can have internal hemmies. Chronic, severe sigmoid spasms will also cause them. As Cari pointed out, an irritated nerve will wreak havoc on your pelvic organs, resulting in dysfunction.

i hear ya

the nerve damage has also caused me to be in constant spasm

horrible related issue which just causes more issues

also hear your frustration with doctors attributing the wrong cause to the problem..sooo annoying

it is just not a common enough condition do be diagnosed easily, but as we all know, it is way more common than documented cause of all the misdiagnosis

This is my problem, too. For me it's tied to the sacral roots--S2, S3, and S4. Any pressure on the back of my sacrum or buttocks (left side) and the nerve goes crazy. I can feel the pain in a direct line between the sacral roots and my rectum.

I'm getting more and more interested in sacral nerve stimulation. And I wish Dr. Possover was in Orlando and not Zurich. :/ I would love to go to him for a consult with the potential of getting his LION procedure done.

C