Health Organization for Pudendal Education

Hi everyone and happy holidays. My computer only allows me to type a few line so Ill try to shorten my story..I am trying to live with severe anal rectal pain that is a fairly new development.My issues began with IC/ bladder (feeling of constant need to pee not being emtpy etc) over 5 yrsago ...had whole nine yds of treatmentts many meds not tolerated or didnt work. Those problems were a walk in the part compared to what came later. By 2009 sitting pain began gradually in sit bones then perineum. I began standing most of the time and drove only necessary meanwhile pursuing treamtments.with no luck( the PTs I saw blamed my pain on a thin butt maybe a small part but trust me, not the cause suspect nerve blocks and minor surgery (labaral tear repair) added insult to injury.. As time went on standing became harder but walking was ok.
By 2010 sitting was horrible soon driving became impossible..Potter MRIs did not show entrapment, but the controversials varices many of us have... had them embolized on one side in2011...no change. Im skiping many details due to space , but in June 2011 had periperheral nerve surgerry on inferior cluneal and PCFN nerves bases on a nerve blocKthat gave a few hours of sitting ability.. I have been going downhill steadily siince.. by Labor Day I began noticing pain in anal rectal area, horrible with sitting saw surgeon in Nov, he called it "collateral sprouting" .. bascally meaning nerve regeneration and told me to do mild exercise, hot tub pool and "relax" Right! In the past month it's worsened further, I can't stand or walk without rectal throbbing.It feels like someone kicked me there and it throbs like a migraine the moment I stand up .Sitting is not possible as I would be right on the spot.. so I am in bed, on and off all day. Guys what can take for this. I tried anal suppositories (dilaudid) help a tiny bit but less so each day. I have been on Nucynta for a long time (i tolerate it ok but not helpful) I have trouble emtyping bladder with many opiates so have avoided them
all pain.. Pain doc offers methadone. scared to try it .. as Im on the Nucynta (cand the supps too (docs don't advise me about interactions..) also on normast sachets for 20days and starting ketamine
cream...Pls guys what helps anal pain Ill do it...I need relief Im going crazy with the isolation and pain!

Hi folks
Im just continuing my post. My computer only allows mw to type a certain amount of info and then it bounces me, hence my quick story and typos. ( not sure why)
...I am not myself, have been tolerating this level of pain for so long due to my urinary issues with many of the pain meds and anti cholinergic drugs...
I have been on remeron for depression but had made me feel worse (tho the doc who gave it to me says "thats not possible" ...It has made me gain some needed weight so I keep it at a very low dose.
Pls anyone what helps with anal pain? I have never felt any pain like it. I am considering finding a rehab center for chronic pain patients as I don't know how to cope ..my strength and health fade more each day.. As mentioned walking was fine until the past 2 mos and my anal area thobs so even shopping and mini chores are hard.. it is horrible for hubby and family .. all I do is cry.
Hbbby believe my nerves are truly regenerating.. and that things just have to calm down over time. He has found info online to support this.
any advice pls give me hope this Christmas. Any meds that helps those of you with this pain?
! so kindly ask to not reply with anything of an unencouraging nature .. I am sorry if this sounds selfish .. but trust me I couldn't handle it right now. Thx for any suggestions and I wish you the best

When I complain to my physical therapist of the rectal pain she says it is the periformis muscle going into spasm. She has me doing stretches and they really are helping. I lay down and put one ankel on the oposite knee and lift the knee which stretches the seat area . Also lay down and pull your ankels up and grab them flop your kness out to the side and pull up on the ankels(like a baby) This is helping me I do them before I get up in the morning and again in the afternoon or anytime I feel the spasm start. Aso squatting helps to stretch this area out too.
The physical therapy has helped me.
I hope this can help someone
Sue

Have you tried Valium supporisities? Does pelvic floor PT help at all or does it just make it worse? What about trigger point injections if this is muscle spasms? Do warm epsom salt baths help? What about ice packs? What about a chiropractor, a very gentle one, to see if maybe your tailbone is out of alignment as I know that will cause rectal spasms. What about a TENS unit?

kathyd,

First wanted to say, I am so sorry you are struggling with this. I do, too, on and off. It is always unfortunately present in some shape or form during the day.

I wanted to ask you why your surgeon said it was "collateral sprouting". Collateral sprouting really is just regeneration of the nerve. However ,if the nerve is "sprouting" and now it's causing PAIN... I would question your surgeon to the possibility of the nerve "sprouting" off into another scar... aka neuroma.

This is what happened to me with my initial injury (I think). My PN and branches were damaged by childbirth/episiotomy (presumably, and most likely), and when the nerve tried to regenerate, it regenerated, or sprouted, into SCAR, forming a painful painful neuroma. This neuroma along with some "sprouts" were removed over 8 weeks ago during my surgery with Dr. Aszmann.

Another question I would want answered is, "why is there pain now... a few months AFTER surgery.... instead of weeks after?"

Huge hugs to you, dear. This is so hard.

I truly understand your frustration and pain.

Praying

A's Mommy

Hi A' s mommy
Thx so much for your informative and kind response. Would it be ok if I PM you with a little more detail? (when on this site my for some reason the system only allows me a certain amount of typing space and then it bumps me..

We can't understand why the anal pain appeared 3 mos after surgery and what you describe is what I feel..
Pls excuse my ignorance but neuroma is another word for scar tissue right?
Thanks so much for your kind thoughts.
I hope that you are seeing some improvement since your surgery.
I will pm you if thats oks
My prayers to you as well!
Kathy

Hi NYT and Sue.
Thanks so much for your replies and suggestions It means alot to know you guys are there. My family
I will write more later when I can focus better and tell you more about what Ive tried.
Thx so much!
best wishes
Kathy









I will continue to do the stretches you mentioned. My new PT a very known one has suggested I do those as well. I had pt with several folks in the past but it was before my sitting pain was a true issue and it didn't help with the IC .. other than to relax me at the time,
Just started with my new PT ...she did some poking around and found much tightness both interally and externally.. and found much tightness and things to work on..Its hard to know if my pain was worsened by PT..It has upped so much in the past 2 weeks that I literally can't stand up without pain immediately.. so it makes sense that anyone poking around in my rectal area could excite already revved up nerves. I want to do PT if it can help,esp with a great PT but part of me thinks I should just
I should just leave things along for ah
I am also very scared, due to all the failed therapies and of my future.. that I know my severe anxiety isn't helping.. My central nervous system needs to calm down somehow. I must admit I have never religiously done relaxatio stuff (like tapes, deep breathing) I haven't stuck with this things,
as part of my just didn't think it would help, but I know I feel better when Im on a PTs table or at my osteopaht docs table.. they say they feel my body releaseing and relaxing.
Ice is my constant companion!
About the valium supps, I am using Dilaudid supps now and am not getting much relief.. I asked my doc about the valium supps, maybe they will work better than the diladid? I am also rubbing on a ketamine topical cream but it will take a few days to know if that will help.
Coolness feels better than heat right now, tho the surgeion advised hot tub every day..
The pain doc over the phone said I am probably in severe muscle sap

Guys
sorry for such a disjointed post.. I accidentally hit send before I proofread.. Thx!

I had my PN damaged by a botched hydrodistention of the bladder (bladder blown up under general anesthesia). My principal complaint is also anal pain which in my case is mostly burning/twisting at this point (9 months after the procedure).

I find that pulling my knees up to my face helps. Both knees. I discovered this without any PT guidance. The PT I saw never even mentioned this exercise.

Other than that, I can recommend cold packs. Lyrica 800/1000 mg/day helps but I am still bed ridden. Narcotics not helpful as they cause constipation, which is not a good idea when you have PN.

Best wishes.

Bathsheba

Hi kathyd
I am so sorry about your pain! You are talking to a lot of people who truly understand. Firstly I will say ( as you do not want to hear negatives that it is possible to function and get used to a certain degree of pain! I think you should try with your doctors guidance other more tipical neurological drugs( all of Whitch are discussed on these forums )
What I find intereasting is the use of saposatries??? I have been researching the incedance of ostomys paciants who suffer rectal pain years after surjury! And the argument of nerve regeneration has always been of great intereast to me! The reasearch carries on! But these people in most cases don't have rectoms!!! So what on earth do they think a rectal suppositorie is going to do for p.n.e suffers?? The ignorance of this condition makes my blood boil( and we all know that's not good for us) hang on in! You will find the resiliance with the help and experiance of the people on this foram and the ability to take your health into your own hands!
We are all behind you. Anne smith