Entering the Dragon - My Journey with Pelvic Floor Pain
Accepting My TMS Diagnosis
10/10 - is my pain level, as I stand in the bathroom trying to relieve myself. “This must be the end,” I thought, “I’ll have to use a catheter for the rest of my life.”
Then, “Do I even want to live the rest of my life, if that’s the case?”
The levels of despair and desperation one has when navigating the medical system with a potential terminal-like condition are indescribable.
Luckily, I had already begun to have doubts about the diagnosis I received from Day One. I knew in my gut that things were okay. I constantly browsed Google, Reddit, and PubMed for other perspectives that might shed light on the true cause and solution for my pain.
Today, I feel blessed to be typing this with a healthy body and mind.
My First Symptoms
It all started a few months after graduating college. I had moved across the country to a completely foreign area and culture. I met great people, but they were different than anyone I had been around for the past 23 years.
I was in a long-distance relationship that was hanging on by a thread.
I remember the exact day it happened. I went to the bathroom, intending to take a normal piss, but my urine stream went shooting out at a 90 degree right angle.
“F*ck.” I thought to myself, “Maybe I injured myself jacking off,” as I had done so beforehand.
A sinking feeling of dread washed over me. I knew if I had an injury down below that it would be difficult and expensive to find a doctor who could treat me. Not to mention the embarrassment that would come from telling the doctor, my friends, and my family what happened.
I did nothing and hoped the problem was either a short term injury or would go away. My symptoms persisted for the next few weeks, with varying levels of effect. Sometimes I would pee straight-ish, sometimes it would shoot off diagonally. None of it was as bad as the first time it happened, so I prayed to God that I would get lucky and heal without medical intervention.
Success
Then, a Great Day happened. I hit a huge milestone in a personal endeavor of mine (surfing), and came home jubilant, feeling waves of satisfaction in-the-moment, without an ounce of stress on my mind.
I went to the bathroom, took a piss and… it was 100% straight! As if nothing had happened a few weeks prior.
“Phew,” I thought to myself, “Now I can resume my life as normal.”
Maybe I should have taken my win more seriously and stopped to enjoy how great life was in that moment. But I decided to keep pushing. I have always been a goal-driven person, and my goal at that point was to travel and meet women.
I moved to another new city, and within a few days, the problem was back. Every time I took a piss, my stream would deviate to a slight angle. Not as bad as the initial symptoms, but still concerning.
I said to myself, “I just need to experience success with my new goal (meeting women) and the problem will resolve itself again.” I still had a gnawing sensation in my gut that there would need to be expensive, medical intervention and that there was a real problem with my body.
So, I doubled down. I moved cities a few more times, chasing women wherever I went. My problems peeing persisted, in various forms.
Finally, I achieved a goal I had set for myself when it came to dating. I thought, “Now I can relax again, and my symptoms will stop.”
The Inferno Begins
I was visiting my estranged brother, when my symptoms began spiraling out of control.
We stayed up all night intensely debating our different world views. Harsh words were thrown, and feelings were hurt.
Finally, we went to bed, and I used the bathroom. I peed all over the toilet. My urine stream was completely uncontrollable.
In that moment, I decided I had to see a doctor. Unfortunately, I also began Googling my symptoms for the first time.
I stayed up all night — becoming more and more terrified as I read about the possible causes and problems with my body/penis that could be causing my strange urination behavior.
Surgery. 50% success rate. Catheterization. Bladder infections.
The list of horrific causes and their (not optimistic) solutions with low success rates scared the sh*t out of me.
The next morning, I hastily scheduled an appointment with a urologist. I did not do any due diligence on the office or specific doctor — just what was nearby and covered by insurance.
Mis-Diagnosis?
The day of my appointment came, and my worst fears were actualized. Upon hearing my symptoms, the doctor without hesitation said, “You have a urethral stricture”.
My heart dropped. I asked if there were other possible causes or solutions that did not involve surgery.
He confidently responded that there were no other possible causes or long-term solutions.
I left demoralized and with a surgery appointment. For some reason, this doctor chose to do an initial scoping at the same time as the operation.
The Fight Begins
I had a few weeks before my appointment. Knowing the random chance of success, I prayed to God that the surgery would go well.
I also did my due diligence. I researched the sh*t out of the surgery procedure for a urethral stricture.
What I found was disheartening — horror stories upon horror stories about failed operations. Many times the operation just made the problem worse, resulting in the patient having to self-catheterize every time to urinate.
Unwilling to resign my body and life to this fate, I dove into researching alternative, non-surgical therapies and treatments.
I found an unreviewed technique used in India and planned out the cost for a trip to Mumbai…
I learned about a new medical device treatment that only a handful of doctors were trained in within the US…
There did not seem to be a light at the end of tunnel. All roads led to a potentially failed outcome.
To be honest, I was scared. I knew my Life was about to change completely, but what I didn’t know about was the twists and turns I was headed for… with an (ultimately) positive outcome.
All I saw in those days — was darkness.
A New Perspective
In my depressed, desperate state, I somehow landed upon a ton of Taoism videos and lectures in my YouTube algorithm feed.
Taoism, or the way of the Dao, teaches that one should live in harmony with the universe and not fight outcomes.
This philosophy of taking away the power something has over you (such as a potentially life-altering medical condition or procedure) by giving up the struggle you have with it — highly appealed to me.
I meditated on these ideas and went for long walks in the rainy forest.
Ultimately, I decided to see how things played out. Right now, I could pee and void my bladder. It was just my urine stream that looked odd. Why potentially worsen the issue with surgery, just to have a straight stream again?
I canceled the surgery appointment. Then, I decided to get a second opinion — this time from an academic urologist at a top-rated hospital. Luckily, I was able to squeeze into his schedule in the next few weeks.
Finding Hope
When I entered the new urologist’s office, he took one look at me, and I could tell he thought that I was fine.
I explained my symptoms and prior diagnosis to him, and he laughed. “There is no way you have a urethral stricture,” he told me. “I see patients who do have strictures frequently, and they cannot pee at all. Their streams are as fine as a needle or just drops at a time.”
Unfortunately, he did not know of a reason that could be causing my strange urination behavior.
I asked him if it’s possible that Pelvic Floor Dysfunction or Chronic Pelvic Pain could be causing my symptoms, as I had seen similar symptom reports from people with those conditions online.
“It’s possible and we can’t rule it out,” he said, “But you don’t have any pain — this would be out of the ordinary.”
He also mentioned that Pelvic Floor Physical Therapy is almost always not covered by insurance and expensive.
I went home hopeful, but at a loss of what to do next. I was starting to see a small glimmer of light at the end of the tunnel.
The Long and Winding Road
I moved again. This time back to the place where my symptoms began. Maybe I felt like I had unfinished business there haha.
I decided to roll with the second urologist’s opinion — that there was no way I had a urethral stricture.
I started doing Pelvic Floor physical therapy exercises at home that I found online. I saw minimal progress, but my symptoms did not get worse.
“Maybe I need to see a professional pelvic floor PT,” I thought. So, I began the process of trying to work the “modern” medical system to get the care I needed. I saw another urologist, got a referral for physical therapy, called numerous providers to try to find one covered by insurance, and added myself to a 3 month waiting list…
Finally, I was able to see a qualified provider.
Reluctant Treatment
For those who do not know much about Pelvic Floor Dysfunction — in a nutshell, it is the chronic tightness or looseness of one’s pelvic floor muscles. These muscles can squeeze on the many nerves in the area, of both men and women, and cause all sorts of unexpected behavior including pelvic pain, constipation, and incontinence.
Concerning symptoms that overlap with many serious, but often non-related conditions.
Women, especially post-partum women, are the largest demographic that providers see for PFD. These women cannot regain control of their pelvic floor muscles after childbirth, and they typically are prescribed muscle strengthening exercises, such as kegels, to regain this control.
Men with Pelvic Floor Dysfunction, on the other hand, are not a common treatment group. Maybe it has to do with the reluctancy men have against going to the doctor and especially going to the doctor for an issue “down there” (just as I delayed going to a doctor myself).
As a result, the number of male Pelvic Floor Physical Therapists or female PTs who are trained and experienced in seeing men is extremely low. As in, you can likely count on one hand the number of providers willing to treat men in your town or city.
The reason for this hesitation in seeing male patients by female providers is simple — traditional manual therapy for these Pelvic Floor muscles requires reaching inside the body.
For women, this is through the vagina. For men, this is through the anus.
Long story short, my female PT turned up unwilling to do this sort of internal assessment or treatment. Instead, I was prescribed a series of similar stretches that I had already been doing on my own.
More importantly, there was almost no discussion or treatment directed at my mental state or mindset when it came to the symptoms of Chronic Pelvic Pain / Pelvic Floor Dysfunction.
The Calm Before the Storm
I resigned myself to having this “Chronic Pelvic Pain” or “Prostatitis” diagnosis, despite the lack of internal assessment by my physical therapist. My symptoms seemed to add up — frequent urination, occasional split stream — all caused by what was referred to as “edging too much” or unnecessarily delaying orgasm. I even found some, although rare, reports of men with PFD who had similar diagonal urine streams like me.
I went down the rabbit hole: reading books by respected authors in the Pelvic Floor field, stretching 2-3 times every day, trying self-massage techniques. I lived on the r/PelvicFloor and r/Prostatitis Reddit forums.
Every time I would have sex, I would have a “flare-up”. I would feel tingling in my penis and pee all over the toilet due to my stream erratically pointing left, right, up, or down. In hindsight, this was a key observation that there was no structural issue with my body. Otherwise, my stream would have constantly deviated, rather than sometimes remaining straight and other times changing to different angles.
Paranoid that I had contracted an STD which could make my problems worse, I would immediately go to Urgent Care where they would prescribe me doxycycline (antibiotics) and give me a Gonorrhea shot. I think I got 3 of those shots within a 6 month period.
It sucked as a lifestyle, but I began to accept it. I began to be less concerned about the day-to-day symptoms. The symptoms were losing their power to control me.
The Pain Strikes Back
As anyone with The MindBody Syndrome (TMS) knows, pain can and will move around your body. If you haven’t accepted TMS as the true cause for your pain, your body will try to distract you with a new type of pain if you successfully convince yourself that a certain area is “healed”.
At this point, I had convinced myself that my pelvic floor muscles were no longer tight or dysfunctional. I had kept a bathroom journal to make sure I only went every 2-3 hours and completed 12 weeks of progressive stretches.
My symptoms had stabilized. I had a slight maybe 5-10 degree deviation in urine stream, and in the mornings, my stream was completely straight!
I “rewarded” myself by letting myself j*ck off normally. I had previously been abstaining or been extremely gentle and finished as quickly as possible. Immediately after, I went to the bathroom to take a piss.
10/10 pain. I am not a soft man, by any means. I don’t claim to be the toughest either. But there is something very unique and acute about having the tip of your penis screaming in pain as urine barely comes out.
This lasted… for a week straight. Every time. I would take a piss.
At that moment, I knew my problems were not over.
Next Steps
I ramped up my treatment protocols and took it more seriously than I ever had before.
Luckily, during my next pelvic floor PT session, we were able to externally massage out the “muscle cramp” I had built up in my PF muscles. The pain subsided completely after that.
I wanted to rule out having a urethral stricture, of any severity, for good. My current physical therapist was using the (low) possibility of having one as an excuse to not assess my pelvic floor muscles internally. Unprofessional, in hindsight, but I was willing to try anything. I wanted to be done with this problem.
In the case of me actually having a urethral stricture and needing surgery, I wanted to find the best doctor in the business to scope and potentially treat me. I was not taking any chances on a 50% success rate for surgery.
I found the original practitioner of a “graft” style surgery technique, about 2 hours from where I lived. While it’s difficult to rely upon outcome data for one provider in a statistical sense, his patients almost never had follow up issues.
I paid 3 grand out of pocket to see him and be scoped.
Thank God — it was a completely clear scoping. I had no strictures or issues with my penis.
Having ruled out any structural damage to my body, I was now confident in my pelvic floor diagnosis.
Frustrated with the lack of willing help from my current PT, I sought out another pelvic floor PT. We discussed in detail my symptoms, prior treatments and results, and what she could do for me.
I paid out of pocket, $350 a session, for her help. She was phenomenal — providing in detail explanations on the physical and possible mental components to my symptoms. She performed an internal assessment and treatment of the muscles.
But none of it worked.
Weeks later, I was left with the same symptoms — an angled deviation of my urine stream, which increased after ejaculation, either from masturbation or with a partner.
My Last Shred of Hope
At this point, my patience and bank account were depleted.
In my final sessions with this new PT, I noticed a pamphlet in her waiting room.
“The Pain Psychology Center,” it read on the cover. Inside contained details for a center in Los Angeles where they specialized in treating patients with chronic pain.
At this point, through my online research, I had heard about the similarities between Chronic Pelvic Pain / Pelvic Floor Dysfunction with chronic pain in general and how the real “source” of these issues was biopsychosocial factors, not any issue in the specific affected area.
I found it interesting and had even skimmed a few articles. But my lack of chronic “pain” in the traditional, sensory definition made me not give it much serious thought.
During my appointment that day, I asked my PT about the Pain Center. I asked if it was possible to “hypnotize” or “mind-fuck” my way out of this chronic pelvic floor muscle tightness that was destroying my life.
She said she had heard of success stories from the Center, but most patients going there had chronic back pain, wrist pain, or fibromyalgia.
However, she agreed that it might be possible for a similar type of brain reprocessing treatment to help me.
The Final Destination
I left my appointment and Googled the Pain Psychology Center.
I found a website and videos created by its founder — Dr. Alan Gordon.
I googled him and found that he was a student of Dr. John Sarno. Dr. Sarno had pioneered a concept called TMS, or The Mind Body Syndrome, which he claimed was the real cause behind people’s back pain and other chronic physical ailments.
According to Dr. Sarno, chronic pain and dysfunction could be cured entirely by self-education and by changing one’s thought patterns. No surgery or constant rehab exercises necessary. And Sarno had real, clinical evidence to back it up.
I was finally ready to embrace this diagnosis.
I ordered all of Sarno’s books, a book by the well-reviewed Steve-O (no, not the guy from the Jackass movies), and a guided journal.
And got to work.
If you’ve made it this far, thank you for your dedicated time and attention. Please leave a comment or subscribe as I unpack my journey with the MindBody Syndrome further on this blog. We will heal together :).