Health Organization for Pudendal Education

Hi Folks
Most of the regulars here know me. I came on tonight looking for advice or info on how to stop a flare of my bladder issues and saw Bobby's post and the conversation that followed.
My top complaint is severe anal rectal pain brought on most likely by peripheral nerve surgery aimed at helping sit bone pain. Prior to Alll that my problems began with IC bladder issues similar to Bobby's I wontl bore you with details again but it's horrible urge to pee, loads of pressure. Im tight as a drum and at times not much comes out. I do pee so Im not retaining but I have a weak stream and constant urge.

This problem seemed to remitt a for awhile, while my rectal issues got debillitating enough that I am in the process of planning a pain pump trial. But in the past few months the IC issues came back big time..
I don't know why ..My meds have been basically the same... so its hard to say why they would cause retention/hestitancy /pressure now ,if they didn't before..I have dealt with bowel issues from the laxatives I take to combat opiod induced constipation, but the bowels calmed down a bit tho not as regular as I would like.
Also IF I try to add a new pain med to help (like say Lyrica) the issue gets worse..

I should I add that over the years we came to the conclusion I don't have classic IC but rather my bladder problems and my sitting pain/rectal pain all seem to come from nerve irritation--
either the Pn or others in this nerve-filled area.

I am unlike Helen for instance,in that I AM very anxious, I do unconsciously clench, catastrohize etc. but remember, I have been fighting pain without much relief for several years so anyone would I am scared and anxious.. I am high strung by nature tho, so I know theres clenching going on.

After years of this docs feel that my pain has gone to the CNS (its in the brain) Hence I am considering the above intervention.
I like most board members have tried just about all the stuff mentioned... years of PT on and off ...seen several practitioners and just had a well-known PT advise me to stop all pelvic floor PT for awhile to keep my central nervous system from getting more flared.
I read "Headache in the Pelvis twice.. back when I first had bladder issues in 2007 or so...
Bobby, all the terminology you use comes right from the book as I have a lot of it memorized by this time! I considered the course,but frankly haven't heard one real person say they got anything out of it. (We don't have that kind of money to waste, as no one here does I'm sure.
At this point my hubby and I have wasted a fortune on things that didn't help.. as I said I tried just about everything mentioned expcept PRF and a few others.

So I'm kind of a mix. I know it would help me to really relax my pelvic floor and Itry but yet I don't believe it would get me well, based on all the trigger point release therapy I had in 6 years. As the latest PT person put it, Ive been "massaged every which way".
I want to aproach the pain pump trial in a relaxed way ... and I so need to stop feeling this severe bladder urge -pressure. Could it be brought on by fear of more procedures?
What can I do to help it?
I will stay away from pelvic floor PT for now, (as Im sure my pain doc would agree ) but what about stretches etc.. I must admit I have not have the patience and attention span to do the breathing exercises or pelvic floor drops religiously as Amy S (a PT of mine mentions in her book. But I try to drop whenever I think of
it ..I am scared yes, but I also am savvy and I now know what may not help me.
Any advice folks, on what will help this danged bladder to calm down?
BTW I did the IC diet and it cost me 20lbs which my very thin body couldn't afford to lose!..I am very frail and need to gain weight..The diet prevented burning it seemed, but never helped with frequency... So as far as diet goes" been there done that"..it made me sicker.
Local urologist was no help ..when infection was ruled out this week, he said "its just IC" .. which he tends to refer out for ... My pelvic pain gyn retired and her replacement/partner doctor referred me out to pain mgmt awhile back, basically as wel,l so I need to figure out how to address the bladder issues. Everyone tells me to calm down and wait and see what happens with my pain management plans, but Im afraid of how this retention sensation will affect things and meanwhile its driving me crazy in addition to the horrible rectal pain.. I would so appreciate any advice folks... Thanks for listening.
Sorry for long post ..I am just too wordy!
Thx!
Kathy

Hello again
sorry for grammatical errors. I was rushing so that I wouldn't lose my post!
Thx again.

Dear Kathy; I have the same feelings you do, however, when you have this terrible horrible rectal pain - it is difficult to "relax", and the rectal pain rides over all other "pains". At my worst, I will put on a guided imagery CD and listen to that, or, I will plop my pelvis up on two pillows (sometimes with ice) - I was told by my PT that this will allow the pudendal nerve to relax and fall back down into the pelvis and it has helped for a while! But, when I am bad, I take my days in increments, and somehow it gets me through a funky day!
~Josie

Hi Josie,
Thx for your thoughts! I will try and see if it helps the PN. Frankym tho I know nerves are involved I have no proof its PN/PNE.. just various opinions of docs/PTs etc.
It could be Tarlov cyst, pelvic Congestion, Hernia etc,
But PN causing IC issues is the most likely root cause. I am waiting for pain mgmt to start a pain pump trial ,-- waiting for red tape and approval so we can get moving with as I can't function anymore, its unbearable. ..the same pattern each day, anal pain in the opening the inner area of the right butt cheek and surrounding areas kicks in as soon I get up and start moving around worsens as day goes on, by dinner time when hubby gets home its awful.
So I lie down alot with ice.
Can't figure out why Im getting worse each day. It would help so much to get out outside in the world but can't drive ...too painful and feel so bad asking hubby and son to drive me places.

Trying to figure out whether the meds I take are making things worse ( a condition called hyper algesia and not sure which med is responsible) Was hoping someone here had some advice. There are so knowledgeable folks who need to know more than docs when it comes to meds and these conditions
Hubby says just stop your suppositories and see what happmes, but I need them to stay sane!
Hoping new pain doc can help with this for the time being.. but they're all so busy...( Im constantly waiting for call backs).
Thanks for you kind reply! Hope you're having a good day!
Best Wishes, Kathy

Sorry for typos and grammar errors..
never seem to spot them until after after I hit submit

Ok , I think what Bobby mentioned makes sense for some types of pain in the pudendal . For example : Injury to the nerve of the penis. Because no stretching stretch this portion of the nerve. But if you have an injury to the sacrotuberous and sacrospinous ligaments , they can aggravate your problem .

Clearly . Bobby event was not a deeper injury . I think that if you got up to stretch the ligaments without stressing the nerve , could relieve the condition . The problem is that if there scar tissue pinching binds to the nerve when you lengthen , takes along the nerve , causing a stretch injury where the focal point of rupture is the nerve injured area .

Surgical Solutions , minimally invasive , could only remove the scar tissue , without those gross decompression surgeries . Unfortunately, our Western medical system is rotten . And the best part is that they offer us a kick Mule : either cripple you or heal you .

For me , warm compresses over the course of the nerve, with roffing ( tennis ball) , have made a big difference. I pass the ball around the buttocks gently, feeling the piriformis . The hope is that with time the muscles and ligaments become more elastic , freeing the nerve . Never , Never ! ! make effort to evacuate . This is worse than anything.

Hi bma and everyone
I agree so with last thing you said, bma......about never making an effort to evacuate...(Assume you mean.... Don't push when having a BM!).
I am on opiods (oral low dose methadone and anal hydromphone suppositories for crippling anal rectal pain. (as a result of an ill-advised surgery with Dr. Dellon.)
I also am a new pain pump patient with a small amount of morphine in my pump and another non-narcotic med..
The oral methadone is like putting cement in your colon, but we can't take it out of my regimen until God willing, I begin to see significant pain relief.
I have been struggling for awhile to find a laxative regimen that works without having to push..
I evacuate in time but unfortunately I get that painful 'build up' feeling that forces me to push a tiny bit to get things going.
Then...' boom'... I have to go multiple time in the span of day or two!
I try to impress upon my pain doc and my nurse that bowel issues only aggravate the PN badly ,and that their therapies aren't going to really help, unless they can get me "regulated".. Their is a new bowel regulator called Linzess I have samples of and want to try but my pain doc doesn't know much about it.
It was given to me by a gastro doctor but by his advice I can tell he doesn't seem to understand opiod induced constipation, and how important it is to be pro-active with laxatives while taking opiates.

So they leave it up to me... but it's such trial and error. (I have been struggling with this for 18 mos.). Prior to opiod use I kept my bowels in order with no problem..

I have a question for anyone who takes narcotic pain meds..

MUST you take a laxative preventatively with EVERY dose of your opioid pain med?

I was told this by the first doctor who RXed me Methadone...It make sense, so Ive been doing that ever since.

But lets say you just had a large evacuation or several episodes ie, (the "runs" ) It seems like taking another laxative then--- if it happens to be time for your next opiod dose--- would be a overdoing it, as it only creates diarrhea / many bathroom visits...further irritating the PN.
But if I don't take anything along with my opiod dose, I can feel the stool back-up starting (that tight feeling). That could also be the messed up muscles from all the pooping ..
Sorry to be graphic! I do try to take gentler laxatives at that point.. but nothing seems to work well enough to give me one "normal" effortless BM a day (my goal) This way the PN could calm down... along with the central nervous system.

Pls folks I have begged my docs for guidance in dosing laxatives.. but no luck.
Is it advisable to take a laxative with every dose of opiod?...Or have other dosing strategies worked better?
I realize we're all different, but just want to check how other folks "time" their laxative dosing.
Please could other patients who take opiods weigh in on how they time their laxative dosing?
I really don't know where else to turn, and so appreciate any advice that worked for you.
Thanks and my best wishes to all!
Kathy
PS ...sorry is this goes a bit off topic from this thread.

Hi Kathy,
It is ccertainly a roller coaster of a not so fun type! I did start timing laxatives (Senna not the full blown regular ones) with the drugs. I only take drugs (oxycodone and/or tramadol) generally every few days but recently almost daily. I take a senna nightly and then 1 more at night if I take 1 or more of the drugs. Probably the only way for consistent results is eating and doing the same exact things every day but that will never be the case for me. It has been fairly helpful and less rocky. Ialso recently went to miralax twice a day.
Janet

Hi Janet
Thanks for responding. It sure is a roller coaster ride, and hard to know what the next turn will bring and why.
Thank for describing what you do...
Like you said, it is hard to follow the pattern at exactly the same time daily although if I find a regimen that works better, I will follow it as best I can!
I take Miralax too, and according to a study I read it seems to have better results with opioid constipation than stronger stuff like lactulose ...(the latter can cause cramping I hear).
Anyway, I have to keep increasing it the Miralax.
and add stronger stimulant laxatives to the regimen as the Miralax takes too long to work for me...It all works eventually, but when you start to have the awful backed up feeling I add more laxatives into the mix.. I take a small amount of oral methadone, and I use dilaudid suppositories when needed.
The first doc who Rx'd the methadone sad always stay "ahead of the methadone" by being proactive with laxatives (but its hard to find a 'norm' and not overdo!)
I am titrating off the methadone and am having more trouble with constipation now at my low dose, than last year when I was at much higher doses..
..maybe its part of the titration down process....Arrgh so much guesswork!
I wish the pain docs would get involved in helping us with laxative and bowel management... as keeping constipation under control is so important with nerve issues.

Janet, thanks so much for giving me your thoughts. Hope you are doing well.
Kathy

Kathy: gosh, my heart goes out to your right now. So, i go to all the same md's and pt's that you go to. But i actually go to two PTs at different places for a variety of reasons - but one is that they are good at different things. Anyway, since i think you go to Beyond Basics -- i want to share this trigger point that i dont think they do (or at least they havent done it to me) that i learned somewhere else and it helps with the IC symptoms. Do you use the "magic wand"? If so, the IC trigger points are at 10 and 2 -- if they are tight they squeeze the urethra. I have been working on these and they help. Just thought i would share -- hope it helps.