Pain levels: measured from one to ten.
0-1 No pain
2-3 Mild pain
4-5 Discomforting – moderate pain
6-7 Distressing – severe pain
8-9 Intense – very severe pain
10 Unbearable pain.
The King of Pain. I claim the title. There are many other fellow humans who also lay claim to it. Chronic pain bestows the title, that’s all you need, chronic pain you’re royalty. In my case I’m referring to a constant; a 24/7 pain; a 6 to 10 vacillating roaming sometime screaming pain level, months on-end, no way to turn it off except by blowing my brains out.
I asked my doctor if he knew what the fifth vital sign was. He hesitated, surprised as if I might have posed a trick question. After racing through his memory bank for verification he answered, “pain.” The Veteran Administration in 1999 made pain the 5th vital sign with the pain scale from 1 to 10.
This is about my search, more so my wife’s tenacious search for an answer, solace and remedy in a sea of medical indifference/ignorance when it comes to chronic pain. It’s about a downhill journey mysteriously, convolutedly leading to the inevitable, the invisible, the misunderstood — and the preordained. I say preordained because at times I felt cursed. Thank you, thank you ladies; without the research, studies, treatments for female pain I wouldn’t have made it. For you female sufferers, you Queens of Pain, I owe you big-time.
From 1 to 10 what is your pain level? From 1 to 10 your happiness level, the sixth vital sign. Happiness level, why not?
I lie on a table with my legs spread, in an examining room within the urology department at the Northwestern University Feinberg School of Medicine.
“Ouch!” I flinch, it hurts, it hurts plenty!
Dr Schaffer, annoyed tells me not to move. He slips it up further.
Wow! That hurts. I flinch again.
“Don’t move,” he says.
“It hurts” I retort.
Leaning over me with his one hand on my penis and the other on the cystoscope he counters with an docthoritarian-docmissive reply: “If you would keep still it wouldn’t hurt.”
The chairman of urology department at the Northwestern University Fienberg School of Medicine tells me I’m the one responsible for the pain; well he’s certainly got the kudos to support his claim. What do I have? A nervous system that I relied upon my entire life to help me make my way thru the world’s slings and arrows, the Boy Scouts, the Marines. So far it has served me well. Until Dr. Schaffer?
Don’t move, I’m not, I say to myself, but give Dr. Anthony J Schaffer the benefit of the doubt, I say to myself, relax, breathe, don’t make a move.
Zip, farther up the urethra it goes, again it hurts, again I flinch; but barely, I manned-up.
Dr. verses Me.
This is where it all began, the first chapter in my pain cycle. Me, the patient, and Dr. Anthony J Schaffer, celebrated urologist who manages a teaching hospital, oversees research, fundraising, revered by his peers — we, Dr. Anthony J Schaffer and Howard have not hit–it-off. I’ve made a lousy impression on Herr Doctor. I’m a whuss. I feel pain. Worst yet I’m responsible for it; a haunting theme to return and bite me in the ass again.
“Prostate cancer.” Dr. Anthony J Schaffer breaks the news to me over the phone, I got it, that’s what he suspected when he first felt-up my prostate. The good news — it is not the supper aggressive form. I’m a 5 on the Gleason scale, which tells me I have a mildly aggressive cancer. The Gleason scale, from 1 to 10, gives a patient an indication of how much the cancer might have spread. In my case it’s taken its own sweet time, how much time that is no one can tell; likely, hopefully, it hasn’t got to my lymph nodes.
I chose to go for a radical prostatectomy over radiation therapy believing, given the same risk they both held, impotency and incontinence, I would get a thorough job by giving the surgeon a close look at the prostate and surrounding tissue.
During radical prostatectomy the entire prostate gland and adjacent glands are removed. There is a danger of damaging the nerves and blood cells responsible for seeing a penis thru to erection. I gave Dr Anthony J Schaffer carte blanche — spare nothing that might have any taint of cancer. I want it out, all of it, cut, cut, cut — as much as you deem necessary, leave no tissue unturned. Sacrifice my sex life for my life.
The other caveat; incontinence.
But not to worry says Nurse Marie, head nurse of urology, ballast and public relations advocate for Dr Anthony J Schaffer, her boss. From my office at work I talked to Nurse Marie on the phone, going over protocol, procedures, dates. When I brought up the question of incontinence Nurse Marie told me that under the deft hand and blade of Dr Anthony J Schaffer not a patient of his has ever experienced incontinence. And besides, Nurse Marie enthusiastically offered, if — if I should be the first he could fix that. It’s called Male Sling Procedure for Post-Prostatectomy incontinence, a procedure that Dr. Schaffer has developed and weaned his scalpel on; it’s one of his specialties. How did he come by his skill if none of his patients were incontinent, I asked, a reasonable question. Oh no, no no no, she answered, not on any of his patients, only on those incontinent from surgery performed by other surgeons, and believe me, there were many she said.
And I believed her. I wanted to believe her. I wanted to trust that I was getting the best care possible from the urology department at the Northwestern University Feinberg School of Medicine. Phew! Not one of his patients incontinent. That’s a load off my mind.
Radical prostatectomy. Successful. Almost died in recovery.
I woke after the operation feeling like shit. Kay, my wife sat next to me in a state of vigil. Am I suppose to feel this bad after surgery? Great view though, large windows, spotted a red tail hawk nesting on the rooftop, pointed the bird out to Kay. Now that’s a good omen. But not good enough.
I told the nurse I feel like crap, like I have the flu but a million times worst. On her way out of the room, without checking my vital signs, she offered “It’s probably the flu, it’s going around you know?” What? You’re going with my metaphorical diagnosis. I caught the flu during a radical prostatectomy? I don’t think so, I replied. I should not feel like this. She’s out the door before I finish my sentence. Gone.
I have never felt this bad, weird, like I’m sinking, going, expiring, dying! “Kay, I importune to my wife: “is there a doctor in the house? “
She got hold of the 2 residents who presided at my surgery with Dr. Schaffer. Kay’s a red head so you can imagine what took place. They got defensive, told Kay she was overreacting. She had no cause to get this upset. She was out of line. No reason to raise her voice.
Right, no reason at all except for major blood loss and shock. I was in extreme shock due to an excessive loss of blood during surgery. Either the nursing staff never read my vital signs or if read they did not recognize the markers for shock.
Dr. Schaffer and both residents were in on my loss of blood during the surgery yet never alerted the nursing staff or saw to it that they replenish the loss. No one would have discovered my condition if Kay hadn’t made a ruckus and got those two residents to my bedside. It’s call hypovolemic shock, a condition you can die from if your blood supply isn’t replenished soon enough. That’s what it felt like, I was on my way out.
While in stupor waiting for blood a nurse from the urology department came flying in to my room intent on demonstrating to me how to insert a catheter, how to empty, clean the bag, all the particulars. I’m required to employ this urine depository, a catheter, for the first week of recovery.
Me to nurse: “I’m in no shape to give you any attention, I won’t remember a thing.”
Her: “I’m sorry I’m scheduled to show you now.
Me: “Please later.”
Her: “I’m leaving on vacation today.”
Me: “Go. Have a nice vacation.”
Just before they release me an intern from the urology department sets me up with catheter and bag, the catheter in my penis, the bag attached to my thigh. There is one problem. My urine is supposed to pass thru the catheter into the bag. Instead it drips. Instead some passes thru the catheter into the bag like its suppose to, some bypasses the catheter, dripping out thru the penis onto the floor.
“What’s with the leak? I’m dripping.” The intern doesn’t know why. He unlike the Nurse Catheter Specialist On Vocation is not a catheter specialist; he’s never seen a leak before but this is only the third one he’s installed.
We get home. The leak is worst. Shit! Can’t we get anything right? I’m going to have to wear a diaper over a catheter? No way. I’m determined to get this one right.
Enlightenment in the ER
Once you’re signed out of the Northwestern University Fienberg School of Medicine there is no returning to the same set of doctors and staff. To the emergency room I go. Once there, my catheter is reinstalled. Still leaks. A resident from urology is summoned, the thinking being that if anyone can sort out the plumbing he can. He wants to take a look with the cystoscope. I mentioned my recent mishaps with previous cystocope exams. He replied confidently don’t worry, he was sure I’d feel no pain. To my amazement he was right. How did you do that, I asked. We apply a topical anesthetic. Is that a normal procedure? I asked. Yes he answered, it is.
Oh? Normal procedure? So Dr Anthony J Schaffer is a sadist; he got off on giving exams without applying a topical anesthetic? Maybe he doesn’t know better? Yeah, right, sure. Possibly the nurse screwed up? Somebody screwed up. Dr Anthony J Schaffer, read this! from Mayo Clinic’s web site: “Your doctor will insert the cystoscope. A numbing jelly will be applied to your urethra to help prevent pain when the cystoscope is inserted.” Come on Dr Anthony J Schaffer, what’s with you? Where is your head? Where is my numbing jelly?
As far as the leak goes the resident had no answer. I’ve got a leaker. Live with it. Wear a diaper over the catheter. It’s only for one week. That’s as incongruous as carrying an opened umbrella inside the home … unless there was a leak from the roof, which is, in case you didn’t get the significance of the comparison, like wearing a diaper over a catheter.
Was it lousy karma? Lousy care? Both?
1. Blood loss that could have proved fatal if Kay had not got the attentions of doctors who initially resisted her plea. 2. Short shrift out of my catheter tutorial. 3. Catheter conundrum — a drip no one could solve or explain. And 4. There were no beds available in urology. After surgery (discovered after the fact) I wasn’t placed in the urology section where I would have had the benefit of experienced urology nurse care. Instead placed in a wing of the hospital that had zilch to do with urology.
Now for the good Karma.
1. The lymph nodes were clean, no cancer there. 2. I kissed my cancer ridden prostrate goodbye — 50% of it was malignant. That’s two positives I can live with thanks to Dr Anthony J Schaffer. I hold no grudge. Forget the lousy experiences had at the hospital, one of which almost killed me … well, that’s a hard one to forget. I’ll hang on to it for the time being. Super-pleased to be cancer free I slipped into a white voluminous balloon-like wraparound diaper that enveloped my ass, belly button, the fresh scar running just below the belly button down to the base of my penis, and the catheter protruding from my leaky penis. Adorable.
My penis either jinxed from the day it was born. Or after puberty cursed by God’s wrath due to owner malpractice.
My penis has given rise to — putting aside varying degrees of momentary pleasure — considerable trouble, fear, insecurity, confusion, anxiety and ultimately chronic pain, a punishment God or as I am tending now to believe more likely a Witch bestowed upon it. It’s cursed or simply unlucky. An unlucky penis, yes I’ll go with that. Don’t believe me? Wait. Read on. My penis can’t get anything right.
If appropriate to context or to break the monotony of calling a penis a penis I’ll begin to refer to it as one of the following: weenie, wiener, schmuck, cock, dick, pecker, prick, schlong, schnitzel, Wally and one-eyed Willie.
Attention Wally! Kegel inspection!
Back at the hospital examining room with Dr Anthony J Schaffer. Several months has gone by since the removal of the catheter. I’m still incontinent in spite of doing 300 Kegels a day for 2 months.
What’s a Kegel? When the prostrate is removed from the base of the bladder damage can occur to the urinary sphincter that is the mechanism to hold urine. A Kegel is an exercise to strengthen pelvic muscles so to regain the ability to contain one’s self. I was encouraged to do them several weeks before surgery, during the time I wore the catheter and after it is removed. I preformed then religiously. Fifty quick flicks, and fifty holding flicks one minute a flick; I’d kegel while on the potty, while traveling back and forth on public transportation to work.
Dr Anthony J Schaffer sat on a stool eye-to-eye with my one-eyed Willie. He wanted to see how well I executed a Kegel. After 2 months and still incontinent, he needed to be assured that the wimp who lurched when feeling pain during a cystoscope procedure could perform a proper Kegel.
“Go ahead. Let me see you do a Kegel”
“Yes sir.” I snapped.
It went something like this: I squeezed my buttocks, pulled in my gut, tighten down on my pelvic muscles and bravo, my penis gave Dr Anthony J Schaffer a node, that being a slight tilt upward toward him, indicating a successful Kegel. I actually gave him 5 quick nodes. My one-eyed Willie passed without fanfare.
As I tucked Willie back into my diaper laden jockey Fruit of the Loom underwear, I casually slipped an apology to Dr Anthony J Schaffer.
“Sorry to be your first patient to experience incontinence.”
“You’re not the first he said. There were others.” He sounded annoyed, like where did I get that naïve idea? From your f**king head nurse, Nurse Marie! That’s where. Of course that was said to myself.
Oh well, can you fault Nurse Marie for bullshitting me? She’s the loyal head nurse, marketing her boss, the hospital; that’s part of her job. What’s a little white-BS here and there, in passing, over the phone, to stoke up a fearful patient’s enthusiasm for surgery; nothing like frank dishonesty to build trust?
Three months, thousands of Kegels racked up, still incontinent.
Back to the urology department at the Northwestern University Fienberg School of Medicine. They want to take another look-see; the cystoscope once again and I’m on the phone again with Nurse Marie. She sets up an appointment for me with a new resident they brought in, Dr J. Quentin Clemens. Dose she do a sell job on him: superb reputation, highly sought after, how lucky the hospital is to have him on their staff, how fortunate I am to get an appointment with the Dr J. Quentin Clemens. I have the honor of being his first patient. Yippee.
Blood gushed forth from my schnitzel like from a faucet.
Astride the examining table I wear the typical patient examining gown. The nurse stands next to me all prepped, ready to go. Dr J. Quentin Clemens enters, introduces himself. The nurse hands him the cystoscope. He takes hold of my penis and inserts the instrument. I screamed, an actual all out scream, not a wimpy ouch as I had with Dr Schaffer. I shot straight up from the table to my feet. Blood gushes from my penis onto the floor — a lot of blood. Dr J. Quentin Clemens looks flummoxed. The nurse looks just as flummoxed. He stares at my pecker spouting blood, looks at the bloody floor, turns to the nurse, tells her to clean up and walks out of the room not saying a word to me. Come on Dr J. Quentin Clemens, I don’t even get a goodbye, it was nice to know you? Schmuck! (In this case I’m not referring to my penis.)
I walked back from the hospital to my place of work to sit before a computer. An hour later Kay picks me up from work to bring me home. I’m in exquisite pain; it’s as if a glowing red-hot molten steel poker was jammed up inside my dick right on up to its very head. Stunning pain; never experienced such pain levels before. It pulsated, turning off and on, three seconds excruciating pain, one-second hallelujah, three seconds excruciating pain, one-second hallelujah. I spent 2 days wrenching back and forth with this terrible pain, another 3 days as the pain tempered down to tolerable. In hindsight this was a rehearsal for the pain to come, the big numbers, the top 3, pain levels I will get to know.
Back to urology department to get a fix on what happened. Marie got me another doctor. She told me Dr J. Quentin Clemens was booked up solid for the entire month. Yeah, right, like they’re going to let him get near my wiener again. Another urologist from Dr Anthony J Schaffer dream team took several tests having no bearing on the bleeding pecker incident. What happened and why? Smoke and mirrors; the doctor deflected my question, would not cop to anything.
You don’t have to be an urologist/brain surgeon to figure it out. Clemens f**ked-up. He by carelessness or thru lack of experience broke the fresh scab located in an area that was recently healing from the surgery. He was so horrified, stupefied, embarrassed professionally he choked, panicked, was at a lost for words and fled. If anyone else has another fix on it be my quest. I do. I have another fix. Whoever requested the cystoscopy overlooked the fact that it was too soon to perform after surgery and that I was still healing. That decision for the procedure could only have been made by Dr Anthony J Schaffer. That could explain Dr J. Quentin Clemens dumbfounded mute reaction.
That’s it. Had it. Will never get near Dr Anthony J Schaffer and those clowns in his urology department at the Northwestern University Fienberg School of Medicine again. A comedy and tragedy of errors. The final cystoscope that broke the scab. Goodbye Nurse Marie and Dr J. Quentin Clemens. I’m taking my one-eyed Willie and wishing you a bloody adieu.
The further adventures of the two friends. PENIS and DIAPER TOGETHER.
Incontinence. It did define my life; put limits on the what’s and the where’s. This part I’m uncomfortable, reluctant to recite, my incontinence, how it has altered/hindered my life. It’s embarrassing, dumb, super-annoying and at times humiliating. It is not as a severe disability like loosing a limb; it’s a minor one; all I lost was the plug to my bladder and a life.
Why did I hold out for two years before I did anything about my my incontinence? Fear. How did I hold out, how did I manage dealing with it for 2 years? Logistics.
Every 1.5 to 2 hours out of my waking hours I have to change a diaper, no matter where I find myself. A twelve-inch by four-inch absorbent pad, referred today not as diapers but as Men’s Guards; touché, come a sudden awareness of eminent saturation and spillage, I dispensed with a wet one and slipped in a dry. I’ve done an exchange on Third Avenue in Manhattan during rush hour. In Chicago during runs along the lakefront. Always carried a 3-day supply in my backpack, several in my back pockets. On the alert whenever I travel, scoping and inspecting locations for the whereabouts of the best, well kept sanitary pit stops.
My life centered around my incontinence. Desperate ingenuity. I came up with layering, 3 layers for maximum snug; First layer: Fruit of the Loon jockey short underwear. I take a large but wear a size small to insure a good snug grip of diaper and genitals. Second layer: Over layer one goes a Hanes brief short underwear; snugger fit yet. Third layer; the pièce de résistance, a boxer brief underwear by Under Amour, the brand responsible for innovative sports-ware for athletes, providing the best in compression, security, functionality and style. Snug on top of snug, the snuggest of all. I’m all tucked in, ready to make a public appearance knowing I got 2 to 3 hours before wetting my pants. The third layer also gives me a dynamite secure tuck when performing a Kettlebell circuit.
Plenty of accidents, have a huge backup of underwear, have a tendency to get irritable, have revealed my diaper dependency to only close friends and some family, jobs I’ve had have been challenging, avoid large social gatherings, go thru 30 to 40 diapers a week, $90 a month.
Why did I put up with it for 2 frigging years totaling 4160 diapers. Why? When there were surgical options available to deal with incontinence. Why? Because I was phobic of all things surgical, all things hospital. But I could no longer put up with it. Eventually I had to take on my incontinence, get the leak taken care of and get a life.
My brother’s urologist recommended going with the Artificial Sphincter and John J Mulcahy M.D. for the job, professor of Urology Indiana University, Indianapolis, Indiana; he’s had years of experience with the Artificial Sphincter, great guy, personable, someone you can talk to.
The AMS Sphincter, a brilliant contraption.
A quickie on how the AMS Sphincter 800 works. It consists of 4 connected parts: balloon, cuff, tubing and pump. The cuff encloses the urethra. When filled with a liquid the cuff squeezes the urethra closed, thus keeping urine in the bladder. When you squeeze the pump in your right testicle the cuff opens moving the fluid into the balloon. This releases the cuff’s hold on the urethra thus urine can pass thru and you may pee. After several minutes the fluid flows from the balloon flows back to the cuff. When the cuff is full, once more it squeezes the urethra closed. It’s beautiful, brilliant; it’s been around for a longtime, high success rate. What more can an adult who goes thru 4000 diapers per year ask for?
Dr. John J Mulcahy installed the AMS Sphincter 800.
No problems, no drama, excellent post-operative care, an easy to talk to doctor, fit the recommendation to a tee. I’ve a restored confidence in the medical profession.
The devise was to remain deactivated for ten weeks after the surgery. I had to return to Indiana University, Indianapolis, Indiana to see Dr. John J Mulcahy for him to activate the device and show me how to open and close the cuff.
In the interim.
I had these awesome new pair of Nike running shoes, called the Goat; it has a waterproof rubber like exterior with a zipper, ideal for running in the rain and in snow. After 8 weeks of walking and healing I begin running again with my coveted Nike Goat running shoes, my proverbial diaper and for the first time tucked neatly in my right testicle, the AMS Sphincter 800 patiently waiting for its day of activation. Had a number of good runs before the big day.
The Big Day — Activation
First week in March I drive out to Indiana University, Indianapolis, Indiana to have Dr. John J Mulcahy activate the AMS Sphincter 800 and show me how to use it.
It works. Outstanding! At several pit-stops on the way back to Chicago I approached the urinal as if I was greeting a long lost friend; once again I stood before a row of urinals, once again I took a long substantial refreshing, honest to goodness pee. Bye bye diapers. Hello world.
Day after activation day: the Run.
First day out running with the AMS Sphincter 800 activated … actually all of me is activated, I’m running, yes running with my new exotic Nike shoes, the Nike Goat, flying, joy, what joy it is to run with out a diaper, to run knowing the cuff from my AMS Sphincter 800 is wrapped neatly around my urethra squeezing it shut, not allowing one drop of pee to pass. The earthen path has never felt so good beneath my feet. My crotch knows an airiness, lightness and freedom it has long forgotten.
Zap! Zap Zap Zap
Three quarters thru the run lightening strikes me right in the cock. Jesus what was that?! A sudden out of the blue sharp painful stab. It hurts enough to break my stride, almost tripped. What is that all about? Shit! I keep running. I’ve lived with injuries, bad knees, ankles, always ran thru them. So I continued to run while trying to ignore the nagging thought that the AMS Sphincter 800 might be f**ked. By the time I got back to the car I’ve ran thru 4 more of those sharp painful stabs all in the same place, in an area where the cuff wraps around the urethra. Dam it!
I had the best most lauded experienced surgeon install a tried and true medical device, the AMS Sphincter 800, they call it the Gold Standard — still something went extremely, ridiculously, insanely wrong. What? An unlucky pecker? A cursed smuck? What?
Later that day, after 3 hours at the computer working in my home office my smuck began to ache. The kind of ache I’d get if I just completed a marathon bout of 3 to 4 consecutive orgasms. A strained, heavy rotund ache, gradually building in intensity and weight over that evening. Not a pleasant feeling. I am alarmed.
Dr. John J Mulcahy promptly returned my phone call the next day.
He says: Lets deactivate the device for overnight. See how you feel in the morning.
I say: I can handle the discomfort. Things could improve by tomorrow. Yes?
He says: No. You could be doing serious damage. You should deactivate.
(Never found out what that serious damage could be.)
Two days later we talk again.
I say: no better Doc. I’m still running. Still those sharp pains.
He says: Try deactivating it for a week.
A week later
I say: No better. I can’t run, had to stop. It’s too painful. I still have that ache throughout my penis but worst. What’s going on? I was running before you activated the device, no pain then.
He said: I didn’t know you were a runner. You never told me.
I say: What difference would that have made. People have run with it before, yes?
He said. You’re going to have come out to see me. I need to take a look.
(Never found out what Dr. John J Mulcahy would have done differently if he knew I was a runner. He was surprised when I told him. I’m surprised that he’s surprised. )
I made an error in doctor-patient relationship when I told Dr. John J Mulcahy about the pain experienced with the cystoscope at the hands of Dr Anthony J Schaffer. I was apprehensive, just wanted to make sure it did not happened again. And it did not, no pain with Dr Mulcahy cystoscope exam, barely felt it. But the germ was planted. I was suspect, again a whuss. I should have not talked pain on my first visit to Dr. John J Mulcahy because lo and behold I’m talking pain to him on his watch and I need for him to take me seriously.
Assigned to hell. Pain 24/7 Deep. Intimate. Intense.
I went on a pain rampage, 24/7, pain level ranging from a 6 to a 10. It doesn’t get any deeper, intimate, intense than pain in your genitalia. At night in bed I felt the pain migrate from my schnitzel to my anal sphincter to my the coccyx, my tailbone; once at the coccyx, it set itself up for the grand finale, turning up the juice, culminating at the base of my spine to streak up sizzling through the vertebrate trumpeting terrible, agonizing pain.
The sounds of pain. Penis and anal pain makes for agonizing moans. Spinal pain makes for agonizing screams.
This spine pain shows no mercy. Recalling it, 2am in the morning, impossible to sleep, I can see myself as if impelled by a spear jammed thru my back into my spine, my spine arching like a taut bow, pushed forward by the thrust of of of of pain, driving me me me, as if possessed by a lunatic, crazed, pace back and forth along a narrow apartment hallway trying to muffle my scream so Kay could sleep. I want out. Adrenaline glands stuck stuck stuck on overdrive, an adrenaline flood screaming fight, fight, fight, flee, flee, flee, my spine burns burns burns pain, pain, pain, get the hell out of here, vacate, vacate, vacate, I want out, out, out of this body. This is no way for a body to treat its soul tenant. The pain fed off me, lived off me. Nothing remained of me. I became pain itself. I no longer existed. Kill me. Put a stop to me. This was a peak pain experience, level 10.
Three visits to the emergency room. Didn’t accomplished a thing; one of hospital’s ER staff thought I was drug addict looking for a fix. I looked like a drug addict.
This Doctor That Doctor
A desperate shuttle from doctor to doctor, an internist, gastroenterologist, proctologist, 2 urologists; from test to test: colonoscopy, ultra-sound, x-ray, MRI. Nothing. Clean bill of health. The gastroenterologist removed a polyp. None of the doctors offered up any recourse once they ran me thru their specialty.
Dr. John J Mulcahy, oh yes, he had a look. Everything one-hundred percent; the artificial sphincter in working order and a healthy urethra.
Removed the Artificial Sphincter
I had Dr. Mulcahy remove the AMS Artificial Sphincter 800. (yes back to ‘male guards’ again) He told me that I would most likely still experience the pain once it was removed. He was right. Still pain. No relief. How about that? How did Mulcahy figure that out? With a knowing smirk on his face he did offer up a possible reason for the pain. More on the smirk to come.
A dead end to end it all.
Four to six hours of sleep a night, a bowl of cereal in the morning, one can of soup a night, that’s it, everyday, once in awhile a salad, did discover when taking valium for an MRI the spinal pain subsided, stocked up on valium, developed apnea, eventually my body called it quits, gave out, overwhelming fatigue, depression, ached all over, on hot summer nights I slept with a thick wool blanket, felt like I was living in a cave, ventured outside of the cave two to three times a month, a dash back to the cave, felt I was a cave living within a cave, hiding out, peeking out, holding out, feeling any better a friend, family asked over the phone, always the same answer, wished they would stop calling, when my wife Kay came home from work she’d coerce me into playing scrabble with her, could barely hold myself up at the table to play, was coming close to cashing it in, was ready, cashing me in. I’m not good at this.
If not for Google I’d be an afterthought.
Then one day, not soon enough, but soon enough, Kay hands me a print out from a web page she found on Google. There in print, the name of my pain, an acknowledgement, a description of what I have suffered thru.
“Urogenital and Rectal Pain Syndrome”
Title of the paper: “Urogenital and rectal Pain Syndrome” Below the title the author’s name: “Ursula Wesselmann, MD, PHD Department of Neurology, The John Hopkins University School of Medicine, Baltimore Md.”
Kay found me Dr. Ursula Wesselmann: specialist and principal researcher, the go-to name in pain mechanisms and reproductive organs with a devotion and focus on the neurophysiology characterizations of the pelvic organs. The next sentence reads: “Pain syndromes of the urogenital and rectal areas are well described but poorly understood and under-recognized focal pain syndromes.”
A phone number beneath her name! Oh the powers to be I beseech you: is this real or a cyber mirage. Terribly excited. Desperate. Could my pain have met its nemesis by the name of Dr Ursula Wesselmann.
Believe it or not, she, Dr Ursula Wesselmann answered the phone. Her staff must have been out for lunch and this doctor has no problem answering her own phone. How bout that? Stunned as I was when I realized that I had the real HER on the phone I managed to succinctly describe my chronic pain and made an assertive request for an appointment.
She was booked up for 3 months, possibly she could get me in sooner but why don’t I go to one of the pain clinics in Chicago? In fact Chicago has a great one, the Rehabilitation Institute of Chicago / Chronic Pain Care Center.
Out of six bona-fide medical practitioners, doctors that I ran my penis, anal spine-pain thru not one was familiar with the idea, concept, subject of a Urogenital and Rectal Pain Syndrome. And not one directed me to a pain clinic. Chronic pain wasn’t on their radar nor was the possibility, the likelihood of a pain clinic existing within the city they practice in. Where is their head? Wherever it is, all that remains visible is their own specialty.
Retrieving my life from chronic pain.
The Rehabilitation Institute of Chicago / Chronic Pain Care Center
Medication trials, and in particular for me, pelvic floor treatment: this is the initial part of an interdisciplinary chronic pain rehabilitation program at the Chicago Pain Center. The total program runs for 1 month, five days a week. Includes: individual psychological attention, biofeedback training, therapeutic recreation, vocational rehabilitation, relaxation training, occupational therapy, nursing care, clinical care manager, supervision and oversight by a physician with a specialty in physical medicine and rehabilitation; they’ve got me covered.
Pain loves company.
I’m placed in a group of 10 to 12 fellow chronic pain patients. They all suffer from either a back, spine, hip or shoulder trauma. I’m the only one with chronic perineal pain. What we do have in common. We have succumbed to chronic pain, we’ve surrendered. We have no life. We’re hoping the pain center will change that. I have my life riding on it. I’m sure my entire group has.
The daily litany at the pain center: what is your pain level and breathe, remember to breathe, slowly exhale and inhale slowly, concentrate on your breathing. Breathe. What is your pain level today and breathe.
Pain trumps Modesty
Pelvic floor treatment; no one else in the group gets it. I do.
A certified trained MPT (Master of Physical Therapy) specializing in chronic perineal pain, in my case one MPT Amy Ross, an All-American apple-pie looking, young woman from Wisconsin puts a, her finger up my ass to massage the, my anal sphincter; in doing so she examines and treats any tightness and tenderness she finds by gently stretching the connecting muscle. You’d think, I’d think that I’d have reservation about receiving an anal massage let alone from a young women from Wisconsin. I don’t.
Kay occasionally sat in with MPT Ami Ross and I during therapy.
Picture this: in a small room Kay, my wife, sits on a chair 3 feet from Ami who sits on short stool while she moves her finger slowly, carefully, circling and probing my anal sphincter. Her head tilts slightly as if she was concentrating on the inners of a combination lock, feeling, reading the various degrees of surface tension to find the unique combination of numbers to release the tension. I lie on a table on my side with my back to them my pants pulled down to my knees. On one occasion Amy timed and counted how many anal contractions I could do in one minute, an indication of increased elasticity and progress; when she announced my number Kay chimed in that she best me with six more contractions. Kay, my lovely wife could not resist the chance to compete, quietly doing a set of contractions of her own. Her anal sphincter was obviously more flexible than mine.
I am internally, eternally grateful for the research and work done to understand and treat female chronic perineal pain. Very little if any was done for males but what ever was done for women can be applied to my chronic perineal pain. Ami Ross began her career as an MPT treating female patients. Over the last several years the number of men she has treated has increased; male chronic perineal pain is on the rise. I had six sessions with Ami. After that it was up to my snitzel to behave and leave my anal sphincter in peace.
Chronic perineal pain plays out between the anus and scrotum in men or anus and vagina in women. It is also known as urogenital and rectal pain syndrome. The perineum is the place where most muscles of the pelvic floor attach and therefore has many sources of referred pain. That said …
Penis to Anus: Excuse me Anus. You’ll need to tense up for now. I have a big bundle of pain just for you.
Anus: Listen here Penis, where do you get off passing off pain. What do you want me to do with it?
Penis: Pass it on, Dude pass it on.
Anus: I’ve got enough troubles of my own Penis. You ever hear of hemorhoids?
Penis: Sorry guy, I got totally slammed. Got more pain than I can handle. There’s no stopping me. Tense up, Spasm-up. Seize-up Anus. Here comes the pain.
Wham, boom-bam, slam-a dam-do!
Anus to Tailbone: Excuse me Tailbone, you gotta brace yourself now. I got a shitload of pain I’m sending your way.
Tailbone: Anus, can’t you keep this pain to yourself? And where did you get all this pain from, eh? .
Anus: From that schmuck back there? Don’t give me a hard time. Get a grip Tailbone. Tense up, Spasm-up. Seize-up. Tailbone, here it comes ready or not!
Wham, boom-bam, slam-a dam-do!
Tailbone to Spine: Listen up Spine. I’m passing you a lot of of pain. So don’t say I didn’t warn you.
Spine: Swell, that’s just swell of you. Thanks for the warning. Where in the Pelvis did you come by this pain?
Tailbone: From that a**hole down there. Quick. Get a grip. Tense up. Spasm-up. Seize-up. I’m sending.
Wham, boom-bam, slam-a dam-do!
Spine goes bonkers, sends the pain up to the brain, the brain goes double, triple bonkers. All organs now in concert, a Pelvic Pain Concerto, prestissimo purgatorio.
That is the journey my pain took, in that order. At night in bed lying on my back I felt the pain make those very moves from one juncture to another. Dr. Mulcahy would disagree; he saw it taking a different direction.
Who to blame? Tight Ass verses Tight A**hole verses Penis
With a sympathetic, condescending smirk Dr. Mulcahy asked me if I ever heard of a “tight ass” His exact words. “You know what a tight ass is?” he asked me. That’s what he suggested, I might have, a tight ass, take Valium, that might calm things/you down.
He insinuated/suggested that I very well could have been the tight ass who was responsible for the tight a**hole. My psyche was the possible source of the referral pain; the supporting evidence he drew upon, I’m sure was my disclosure to him of the pain I experienced during my first cystocope with Dr Anthony J Schaffer. Dr. John J Mulcahy was not about to give me the benefit of the doubt given Dr Schaffer’s status as a doctor, my status as a person, my status as a cry-baby Once again a doctor points the finger my way.
All coincidental says Dr. Mulcahy.
The fact that the initial trauma, the acute sharp pain, the initial stab of pain, first occurred when the devise was activated and I went for a run; the fact that it occurred right where the cuff embraced the urethra — all that coincidental says Dr. Mulcahy. He looked me straight in the eye and said with conviction, “yes it’s a coincidence.” The device, the artificial sphincter had nothing to do with the chronic pain.
Coincidental my tight a**hole. Dr. John J Mulcahy, you’re a highly respected surgeon and urologist; don’t use your credentials to bullshit me. It’s my body — I know where the pain began and where it resides. He was not about to suggest that the AMS Artificial Sphincter 800 possibly have kicked off the pain cycle; medical paranoia; might leave him open for a lawsuit, that’s understandable. No matter. I’d without reservation recommend Dr. J Mulcahy and the Artificial Sphincter to anyone that wanted to control incontinence. It’s a sane solution, it works and Dr. John J Mulcahy is one of the top specialists to install it.
The injury not found but the pain knows, the pain lives on.
No one else, as far as I know, has had my experience with the AMS Artificial Sphincter 800; checked on google, called the manufacturer; possibly I’m the only one to have it removed. What ever happen to me was a fluke, a happenstance, not part of the norm, but know, no doubt, that it happen with a — from a — devise that a surgeon installed. The invisible wellspring of pain, a mystery for the ages to reveal. Or possibly Dr. John J Mulcahy knows but is not talking. The injury not found but the pain knows, the pain lives on.
As it was the Chronic Pain Center would not have treated me unless the artificial sphincter was removed. They believed that the cause of pain could only have originated from the device as I was running. They had to know if I’d feel pain once it was removed. So did I. Chronic pain was the answer.
Medication Trials. Reaching somewhere into the confines of my penis, amid cellular activity, looking for the on and off button.
Concurrently along with pelvic floor treatment are the medication trials. I believe that all or most of my chronic pain group experience medication trials.
My first drug Gabapentin (Neurontin) is a broad-spectrum analgesic, it cover a range of problems: migraines, seizures, depression, complex regional pain and then some; has minimal side effects if any.
The next day on a minimal dosage of Gabapentin all the exhaustion, fatigue, body aches gone. The pain level dropped to a 5 or 6. I gradually increased the dosage to maximum but the pain level plateaued and began to climb back up. So keeping the neurotin on a minimal dosage, because it effectively dealt with my fatigue/depression, I was then put on nortriptyline, part of the class of drugs known as tricyclic antidepressant. It often is used with neurotin.
Once again I’m indebted to the female gender for my recovery. First as previously described the pelvic floor treatment originally developed on a women’s behalf. Then a thanks for postpartum depression a woman might have gone thru after giving birth. A tricyclic was given to treat depression. But as you would have it, the tricyclic also suppressed any pelvic pain a woman was experiencing along with depression. Nortriptyline is a class of tricyclics that somehow blocks the pain message to the brain. It works for a woman. It worked for me. After reaching the maximum dosage I felt no pain — zero pain level and I remained at zero.
The Final Treatment
On my last day at the Rehabilitation Institute of Chicago’s Center for Pain Management I was given a certificate, call it a diploma, stating proof of proficiency. Proficiency at what? I was surprised, amused when I first read the certificate. I “successfully” graduated from the Rehabilitation Institute of Chicago’s Center for Pain. I’m an alumnus of pain. What it was, my diploma, was the final act of therapy from the Chicago’s Center for Pain — it brought on a big warm grin that percolated throughout my psyche, confirmed my pain experience and my victory over it. I covet the certificate. It reads as follows:
This certifies that
has successfully completed a course at the
CHRONIC PAIN CENTER
REHABILITATION INSTITUTE OF CHICAGO
THE PAIN TEAM
My Pain Team.
The therapist, nurses, doctors that were involved in my treatment sat around a table with me at the far end, the center of their attention. A staff nurse, vocational therapist, recreation therapist, physical therapist, pain psychologist, attending physician, biofeedback therapist: each in turn told a Howard story, some part of their experience with me in relationship to their specialty. They then congratulated me, handed me the diploma, a t-shirt and sent me off into the sunshine pain free. I was beaming as I left the pain center hosting within my crotch a male guard, a diaper, it super compressed beneath 3 layers of snazzy super snug underwear, the diaper securely in place, hugging, smothering my genitalia for dear life.
♦ ♦ ♦
EPILOGUE TWO Male Pelvic Pain: It’s Time to Treat Men Right.