Pain in the Pee Pee

Apologies in advance for the length of this post. It’s taken me awhile to regurgitate all this info. And I’ve blocked some things and left others out. Additionally, rather than a multi-installment drip-drip-drip of medical posts, I thought it might be most impactful to pack it all in one. So, this is this is about 2.5 years of pain and attempts to get to the proverbial “bottom” of it via the medical-industrial establishment, all in about 3,000 words.

In roughly spring of 2016, approximately midway through my very expensive 13 month coaching agreement with Melissa Ford (I called it “Getting a PhD in Me”) she called me on my shit. I was whining and bitching and complaining about my constant fatigue and brain fog once again. There was also some intermittent “pelvic” pain that began early in 2016. I kept waiting for the coaching to “kick in” and fix it. She said, “Well, you can continue to come in and complain to me about it every week if that helps. Or you can get powerful and find the solution.” Uh, whelp. Ok. Maybe I should actually take advice from the person I’m paying to GIVE ME ADVICE!

Thus began a several year odyssey of chasing down the source of my pelvic pain. Additionally, I had very little energy, needing a daily nap of at least 30 minutes to function. My brain was foggy and my muscles were hard as a rock throughout my body, as if I was flexing all the time. It felt as though I was sitting on a pair of lacrosse balls, so rigid were my glutes. As things progressed over the next 18 months or so, more generally the pain manifested as though somebody had a hot poker inserted in my urethra…and my anus. Think urinary tract infection 24/7. Squatting was painful. Squatting and twisting – excruciating. I had a sense that the pain was emanating from somewhere deep within me, yet I couldn’t pin it down. I was depressed, yet would put on the happiest face possible when working, seeing as it is difficult enough to get a natural expression out of people in front of a camera. Of course, I continued my regular workouts, thinking that getting stronger was the answer. Toward the end of 2016 I finally quit seeing Jerome, the fantastic trainer with whom I had worked for several years.

The beginning of a not-so-good-very-bad-painful period in my life. | July 2016

I have seen a LOT of practitioners with training in a LOT of modalities. To a person, they have all been kind and well-meaning. So, clean off your readers, fill up your coffee and join me in a walk down traumatic memory lane as we skim through the panoply of people with whom I worked over the course of 2016, 2017 and 2018.

In late 2016 I got a flyer from a concierge physician I had photographed several years earlier, Dr. Ingrid Liu. She was opening a practice in Oak Park. I made an appointment. I signed up after the appointment. To be a patient cost $150/month. It really seemed like needed somebody to quarterback this thing. If I could just find the right specialists….

A full physical showed I was diabetic and overweight. Kidney and liver numbers were not great. My homocysteine level, which is a measure of inflammation gleaned from a blood test, was off the charts. 10/11 is high end of normal and I was at 26. I weighed 188 lbs (I’m 5’ 8” and shrinking) at my physical in January 2017. While I had improved my diet somewhat over the years, a referral to a local dietician showed me just how far I had to go. I was basically blowing through my daily sugar budget (36g for men) by 9am with a cup of flavored Chobani yogurt at 16g and a Clif Bar at 21g (but, but PROTEIN!). This was before the M&Ms, chocolate, ice cream and typically a SECOND Clif Bar as fuel after a tennis match or work out. I thought because I was working out like a madman that I could eat like this. I was wrong. The dietician was helpful insofar as she got me conscious of what I was putting in my body. I altered my diet according to her instructions, cutting out some (not all) sugar and concentrating on fruits, grains and vegetables. If only it were so easy….

At some point Dr. Liu reinforced the recommendation I’d gotten from the initial nutritionist to take Methylfolate, due to the MTHFR gene abnormality and the high homocysteine level. I messed with OTC versions for at least a year before she recommended Deplin, a 15mg dose. This brought the homocysteine down under 20 yet did not relieve my pain.

I was given steroids. Nope.

Lyrica. Nope and fucking YUCK. That stuff is awful. It is used for fibromyalgia. I felt like what was left of my brain function had been chemically lobotomized.

There were more prescription meds. Some of the urethral analgesics gave temporary relief. Nothing “fixed” me.

Showing up at the dock for a photo shoot with a bit of gear. | June 2016

My dear friend Lisa recommended a place called BodyGears. While they were well meaning, it is now clear they were out of their depth with my level of bodily disfunction. They gave me some leg exercises and stretches and when I went in, somebody would deeply manipulate my abs and viscera. (Yes, this was as fun as you think it was.) The trouble was it was always a different person who saw me. I’d have to explain everything that was wrong each time. Next!

Over the years, I have worked with Rob Fischer, a talented chiropractor and acupuncturist. Using needles (sometimes with leads from a small electrical transformer attached), cupping, gua sha and chiropractic adjustments, he was typically able to relieve the pain and give me some relaxation, yet the pain always returned. At least we always had great conversations. He referred me to a Chinese herb specialist, Dr. Xie, in Schaumburg who gave me some - you guessed it - herbs to take. No change.

David Fluecke, an incredibly gifted neuromuscular massage therapist, who had helped me with a couple rather acute muscle injuries from too much tennis (who, me?) had nothing to offer this time other than a few stretches.

Rob referred me to Beatrice DeFranco, a structural therapist (the non-trademarked word for a practice similar to Rolfing). She also is a specialist with herbs and other modalities. She went through a laundry list of possibilities, told me I’d never play tennis again and did some abdominal body work, gave me some herbs and sent me on my way. I had a second appointment, yet I didn’t feel like it was moving the needle. Granted, two appointments is probably not enough to make that determination, but money was tight and I wanted the Magic Pill to fix me NOW.

Was sent to an Orthopedic surgeon with an MRI of my pelvis because some of the pain seemed to emanate from my hip. That wasn’t it.

At some point, I had an MRI of my lower back. While there was some stenosis around the spine, no smoking gun was discovered.

Dr. Liu referred me to Dr. Sheila Dugan, a pain specialist at Rush. She examined me and the gun remained elusive. I believe there was some talk of direct injections of some sort of nerve blocker. For some reason, in addition to not sounding like much fun at all this didn’t strike me as the right approach. Sometimes the body knows what the body knows….

In mid-2017, Dr Liu referred me to Kotarinos Physical Therapy, a practice specializing in pelvic floor PT. I saw Maureen O’Keefe fifteen times between June and September. Pelvic floor physical therapy is just also about as fun as the name implies. There are a multitude of muscles and nerves that begin and end somewhere in the depths of your pelvis. Despite the name, the “pelvic floor” is not made of bone, as one might think. There’s also a lot of fascial tissue (this is the tough tissue that holds your muscles and organs in place. It’s the silvery stuff on a piece of beef that you can never chew through. This material is much more important than you probably have ever known.

Is this thing on? | August 2016

My body was armored up as if to do battle. The skin and muscle in front of my pubic bone was practically indistinguishable from bone; it was that hard. Maureen began mobilizing this tissue, along with that of my inner thighs and glutes. How did she do this? She used her thumbs and forefingers, as if she was a baker working with pie dough. In addition to this writhe- and scream-inducing excitement, she also did internal work done in an attempt to release the trigger points. In the case of a dude, for internal work, there’s only one way in. Yep. Fun times, indeed. Maureen left the practice to move out of state with her family in late 2017. I went to one or two appointments at another clinic and then this modality dropped off for awhile as it was only giving me some temporary relief while costing $160 a pop out of pocket.

In November of 2017, I went to see Dr. Reynes, an “Integrative” physician. Integrative physicians have sprung up all over the place in the last few years. Frustrated with many of the failings of traditional allopathic medicine, they are ostensibly looking at the body as a series of integrated systems, as opposed to the silos of a specialists. Yet, they almost all leave out one key system, which we’ll get to later. Dr. Reynes ran a bunch of tests and recommended a bunch of supplements. Which I took. At this point, my diet was much cleaner, yet he also recommended I switch to eating vegan. Later he prescribed an “elimination diet” which, by early 2019, eliminated pretty much everything but rice, quinoa and various forms of broccoli. For awhile prior to that, I was eating like the perfect vegan and it was not moving the needle at all. Actually, that’s not true. If anything, I was in MORE pain after certain meals.

Gallons of water in the back of my VW took months to diagnose. Came from the sunroof. It was closed. Fun times. | Summer 2016

Here’s another kick in the teeth. In late 2016 I met with someone I thought was some kind of insurance consultant. Dr. Liu told me she was somebody who helped people find the right health insurance. Actually, she was a sales rep for a health insurance company. She told me their company could write short term plans with decent coverage - better than catastrophic. They couldn’t write a 12 month plan, however. It needed to be split into two plans, one month and 11 months. Ok. I signed up. Then I got my physical in the first month of coverage. The results of this then became the pre-existing condition for the next 11 months of the second plan, thereby obviating the need for them to pay for any of the claims. Good work if you can get it, eh? Now you know what drove Mr. Incredible back to superhero-hood.

In late spring of 2018, I took a six week course of Ciprofloxacin, a powerful antibiotic. Dr. Liu prescribed this in case the problem was interstitial cystitis, a very difficult to treat infection of the bladder lining. Not too long after this, I developed adhesive capsulitis aka “frozen shoulder” in my left arm. I couldn’t move the arm outside of a very small range without feeling as though somebody popped my shoulder joint with a cattle prod. I had to change how I dressed. I could no longer sleep on my side or stomach. Lifting and supporting a camera with my left arm, especially with a long lens on it, was awful. In short, I was a (barely-walking) fucking mess. I was in a terrible mood most of the time and generally miserable to be around. Talk inevitably turned to “How do you feel” and I’d go through the list of things I tried since the last time I saw the person. Dating was a complete non-starter for what should be obvious reasons. There were a couple occasions that I had to postpone a photography job because I couldn’t walk. The net result on my business, over the course of the couple years, is that because I wasn’t particularly excited about working because it caused shooting, burning pain in my dick, I wasn’t doing a whole lot to generate business in general. When somebody asked if I was available, there was underlying attitude of resignation, as I muttered “I guess so”. I didn’t go to business school, yet I’m fairly certain this is not a recipe for growing one’s business.

Does it get any healthier? Proof of diet for my dietician. | February 2017

Sprinkled throughout this fun, I was also getting deep tissue massages every month or two, and sometimes even more frequently. Debbie Simmons, who is a goddess with her hands, would do her damndest to break up the rocks, while remarking how my tissue didn’t feel “right” or “normal”. It wasn’t responding as it should. Meanwhile, I’d go play tennis for a couple hours or have a photo job and I’d be right back where I started.

Despite the lack of results with the first integrative doc, I made an appointment with another at the suggestion of Dr. Liu in August of 2018. His name was Dr. Patawaran and he sublet an office from her. After filling out yet another packet of forms (privacy be damned, I’ll vote for anybody who promises centralized medical records!) and coughing up $1,200, I had a bunch of blood drawn. He recommended having my apartment tested for mold. I did and it was clean (that’ll be $500, thank you very much). A month later I had a follow up appointment during which he rapidly went through a sheaf of reports, scribbling notes hither and yon. There wasn’t a specific diagnosis that I recall, just many imbalances. I was given a list of about $750 worth of supplements to take… every month. At this point, I was just fucking pissed off. I refused to buy them (this was easy, because I truly did not have the money). In my mind (which, granted, did not attend medical school), after all the positive dietary modifications, there was no possible way that my condition was caused by a bunch of missing micronutrients. I mean, wasn’t that the whole purported point of eating a vegan menu?

Also in August, I went to see Dr. Tonino, an orthopedic surgeon, whom I happened to know from the tennis club, to see about fixing my left shoulder. He examined it on one Monday and I returned the next for a cortisone shot. This was another $1,200 plus the cost of the initial visit. The shot offered me… absolutely Zero relief from the pain. Nada, nothing, zilch. Do not pass Go. I was also sent to another PT facility which may have been staffed by descendants of medieval torture specialists. I got some kind of ice water circulation sling device to take home and wrap around my shoulder. It did nothing to ease the pain. I was supposed to use a rope with a pulley over a door to pull my left arm up with my right. Uh, sure.

Shooting James & Bonnie at Wrigley Field. | July 2017

All in all, I’ve had pelvic floor therapy with four different therapists at two practices over the years, with more than 50 appointments at Kotarinos alone. In March of 2018 I returned to Kotarinos and Vicky Yeisley was my new PT. She was and remains amazing. That said, her technique was more physically aggressive and more effective than Maureen’s. It hurt like all hell, yet seemed to have some generally positive effects. Vicky is also trained in “dry needling”. Again, another modality with seeming medieval roots as it involves finding the trigger point (essentially the nasty knot) in a muscle and inserting an acupuncture needle directly into it, then moving it in and out as if tenderizing a piece of meat; which in effect, she was. It just happened to be meat that was still fully attached to a living body - mine! This is accompanied by much gnashing of teeth, yelling and sweating. I’ve had my glutes, my hamstrings, my adductors, my calves and my neck muscles dry needled. I am a walking pin cushion.

At some point over the summer, I was bemoaning my condition and generally bitching and moaning at my tennis buddy, Milt, who is about 20 years older than me. Milt suggested that perhaps the problem was not physical, but psychological in nature. “Bah! Milt, do you know how much therapy, meditation and personal growth work I’ve done???!!!” (And I proceeded to recite the litany of personal growth seminars, training, etc. that I had done.) “There’s no way it can be psychological.” Milt shrugged. “Ok,” he said.

Late that summer, at one of my next weekly sessions with Vicky, she said she wanted to try a technique that she had learned from a French physical therapist. I consented. With that, she proceeded to mark a couple of reference points on the front of my pubis with a ball point pen. It tickled a bit. Triangulating her target using the marks, and in contrast to the normal teeth-gritting tissue mobilization technique, she very, very, very gently touched a spot on the inside of my left thigh with her index finger and tenderly held it there. Within seconds I violently burst into tears as if I were a four year old and somebody had just knocked my shiny new chocolate ice cream cone in the dirt. I had such an instantaneous and powerful emotional release I was left stunned. “I think Milt might be right,” I remarked sheepishly as I wiped the rivers of tears flowing down my face and did my best to regain my composure.