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(Long) Introduction - prostatitis/pelvic pain/entrapped nerve

Discussion in 'Support Subforum' started by c90danwaiel, Oct 7, 2016.

  1. c90danwaiel

    c90danwaiel Peer Supporter

    Hello! I’m a 26 year-old male, who was diagnosed with chronic prostatitis, then chronic pelvic floor pain, and most recently, an entrapped nerve. (Before that, I was given a few other random diagnoses by a quack urologist, who’s on probation with the medical board, but that’s another story . . .).

    I literally just bought Dr. Sarno’s book The Divided Mind last night, and I’m about a third the way through. I’m still a bit skeptical, but it is making a lot of sense in many parts.

    My symptoms are a near constant burning or cool sensation in the genitals, rectal area, and perineum, and a tender spot in my urethra (only present sometimes, when I apply pressure from the outside). The pain first started as an acute pain in my urethra, and then has slowly shifted into that group of symptoms. My pain has now been going on for about four months now, and it’s really taken its toll. Like a lot of you, I’ve gone through many treatments for my pain. For me, it’s been multiple courses of antibiotics, a few months of physical therapy from a pelvic floor specialist (including internal massage), antidepressants, muscle relaxers, have seen been seeing a chiropractor.

    Surprisingly, some of the treatments did work. However, I’ve noticed they worked best when I was really optimistic about them and truly believed they would work. My first course of antibiotics worked great – until I noticed a brief relapse of pain was convinced the bacteria had become ‘resistant’. Later, I was told that prostate test was actually contaminated and they hadn’t found any bacteria. My pain came back full-blast.

    With physical therapy, my PT suggested my hips were misaligned, matching a lot of what I’d previously read on the internet. Was convinced that was at the root of my problem. After just two days of realignment exercises, I had nearly two weeks with 90% symptom reduction. Then I went camping, and carried a very heavy load in my backpack. Noticed the pain return a bit, and I was sure I’d sure I’d messed things up for good and started freaking out. Got everything realignedat the PT a few days later and sure enough, the pain was still there, just like I’d expected.

    Looking back, I’m wondering if those were placebos. My pain has changed with my stress and expectations, and whenever I’ve been intently focused on something else, the pain seems to largely subside. My default state has been me seeing this as a major crisis that I’m working through. I wake up each morning thinking about this, and I’ve fallen asleep reading about possible treatments at night.

    I was been diagnosed with OCD as a teenager and have a habit towards ‘catastrophizing’ about things. I do have an odd history of psychosomatic problems in my past, particularly as a kid. I had issues with skin hypersensitivity: clothes rubbing against sensitive parts of my body, which occupied my thoughts for the entire day. It really bothered me for weeks and it felt like something was really wrong. I actually had hypersensitivity at the tip of my penis for a few months at 13, and ended up having surgery to remove a very small skin tag (which itself wasn’t that sensitive and in retrospective, probably wasn’t the issue). It did seem to take care of the problem though, since I was assured by the urologist I saw that that was the root of the problem.

    Last year, I had what I thought was an ulcer for a few months, even though I tested negative for the ulcer bacteria. The pain ended up disappearing after I switched to a less stressful position at work.

    So back to now: I have an appointment to see a sports medicine doctor next week to investigate what my physical therapist thinks is an entrapped nerve – which one, she’s not sure. (And neither was my chiropractor). My symptoms don’t really match the innervation pattern of any particular nerve.

    In my attempt to collect information for my appointment with the sports medicine doctor, I’m coming up short at consistent things that trigger my symptoms. My triggers all seem to have matched what I thought was the underlying cause of my pain at the time.

    Sitting made my pain worse when I thought it was prostatitis. When I thought my pain had something to do with my hip flexor, I was able to sit down for nearly 36 hrs. over three days for a work trip, with no worsening of symptoms. In fact, it felt better then then it had for weeks (largely, because I think I was focused on work).

    Sorry for such a long introduction. Just trying to convince myself this really could be caused by my brain and not some entrapped peripheral nerve somewhere in my pelvis. Hope to finish "The Divided Mind" this weekend, and will do some reading on the forum. Also going to try my best to focus on other things than my pain, and see how that helps.
  2. pspa

    pspa Well known member

    Last edited: Oct 7, 2016
  3. c90danwaiel

    c90danwaiel Peer Supporter

    Yeah, two days did seem a bit miraculous to me. She'd given me a routine of doing the exercise 3x daily. Over the next two weeks, I'd noticed that if I delayed my mid-day exercise by a few hours, the pain would start to come back. In retrospect, it seems a bit absurd that my hips would have misaligned so much in just a few hours of delaying an exercise that it would've begun affecting a nerve.
  4. pspa

    pspa Well known member

    I once had a PT who claimed in just one session with him my hips had significantly realigned. Went through some absurd ritual of measuring them. Complete nonsense. I would not presume to evaluate your case, but having said that, it sure sounds like a placebo/nocebo response.
  5. c90danwaiel

    c90danwaiel Peer Supporter

    One thing I forgot to add is that this pain first began during a very stressful week. I'd just received a false positive result on a herpes test, and so I'd been spending the whole week obsessing over the accuracy of that particular test and about whether or not I was starting to experience symptoms. I began becoming hyperaware of many of the same parts of my body that are experiencing pain now, and so I wonder if that could've fed into triggering all of this. When the pain began, I thought there was a good chance it was actually a symptom of herpes infection.

    It began my dark cycle of spending most of my day on internet forums, reading about various symptoms diseases that I could have. By time I'd taken another more accurate test and it'd come back negative for herpes, I'd already had the diagnosis of prostatitis and the obsessive internet searching continued.

    For a brief while, I'd ended up with a diagnosis of something called Peyronie's disease - from a quack urologist - and experienced some of the pain associated with that disorder, until the next urologist said I didn't have that condition.

    It's a little frustrating that while my pain is decreasing - now that I'm thinking this is psychosomatic - it hasn't gone away. But it sounds like in a lot of cases, it's a more gradual process. So I'm going to do some more reading later, be patient with myself, and also try to take up some of my old hobbies and shift my focus away from my health issues.
  6. c90danwaiel

    c90danwaiel Peer Supporter

    Yeah, that kind of happened to me too. My PT had a large protractor to measure my hip rotation and had me do a set of the corrective exercises. She said my hips had realigned somewhat after I'd done a few sets of those (although she sounded a little unsure about that) and to keep up with the exercises.
  7. pspa

    pspa Well known member

    Sorry if I offend, but I have found PTs and chiropractors to be pretty much useless. It's shocking to me, truly, that there are so many of them earning a living, there's practically a chiropractor on every corner now. I suppose PTs might be good at rehabbing an acute injury. I can't imagine what chiropractors are good for.
    Tennis Tom likes this.
  8. c90danwaiel

    c90danwaiel Peer Supporter

    No offense taken. I went into this with a similar perspective. I'd gone once before to a chiropractor for a back issue and it didn't do much. I went to one out of desperation, in hopes it would help (there was a case study showing a particular technique was able to help resolve pain someone with pudendal nerve entrapment), but it hasn't done much for me.

    I think PT can actually play a positive role in pelvic pain issues, in so far as it can help you realize where your pelvic floor is and relax it. Before I even saw my pelvic floor PT, I bought a book written by a physical therapist that taught some relaxation exercises and said there was a mind-body connection between the two. I'd just started to have issues with hesitation during urination and was going to to the bathroom up to 20x a day. Those particular symptoms away instantly once I become aware that I was tensing that area and then consciously focused on relaxing it.

    That being said, I'm a little skeptical about the rest. Think the positive results I saw with the burning pain - my main symptom - were likely placebo.
  9. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    You're story sure rings a bell, I and I'm SURE most everyone here has gone your route and explored all the structural allopathic answers--nobody comes to Dr. Sarno's TMS route first. First of all save your money on the chiroquackter--been there, done that--their trade is a testament to the FAILURE of modern medicine to deal with chronic pain--because it's about 80% psychosomatic. A few decades ago physicians sneered at the thought of chiros--now they are even part of some medical practices where the docs shuffle the mentals off to when they start backing up the waiting room for too long. PT works because most injuries heal by themselves in two weeks anyway. At least most PT's seem to be well meaning and athletic and can give you some training tips like having a life coach.

    But--from YOUR story, it sounds like you found the right place--finally. After your lifetime of TMS symptoms you and most others are skeptical--Steven Ray Ozanich who has written a TMS text/tome, "THE GREAT PAIN DECEPTION", (which you should order from Amazon right now), threw his Sarno across the room across the room in disgust after reading a few pages--he did pick it up again eventually--and wrote his own great book.

    I just had a recent prostatistis attack that required going to the ER for a cath, but I'm 68--and I recognized some TMS factors that were either the cause or contributors. It resolved in 48 hours and I pulled the cath out myself--it's a pain to run around the courts with a bag of pee strapped to your leg. My brother had a quack-money grubbing URO to who was constantly having him in for surgeries to shave his prostrate, giving him meds until he was literally dizzy with vertigo, I had to carry him in because he could not walk from the vertigo. I found my bro an article about the uro-quack racket that was complementary to TMS, and his "prostrate" problems were solved.

    Keep reading Sarno! Stop emptying your wallet to quacks and snake-oyls. Massages are OK for the purpose of relaxation--not for a cure--although relaxation is the cure--let your mind float downstream.
    Last edited: Oct 8, 2016
    JanAtheCPA likes this.
  10. c90danwaiel

    c90danwaiel Peer Supporter

    Thankfully, it's all covered by insurance, so I'm not losing anything out of pocket to the chiropractor, apart from a relatively small co-pay. Funny you brought up Ozanich's book - just bought it last night and started reading it.

    Still surprises me how I could experience this much pain just psychosomatically, but the brain is powerful. My past episodes were much less severe than this time. Have been noticing a few odd things since starting to read Sarno - my pain jumped to a new place since reading the book, and I'm having some resurging pain where I had an old back injury. Sounds like my brain is starting to cause pain elsewhere as I'm catching on the true cause. The pain has also ramped up in my usual places - wondering if my brain is trying to distract me from reading?

    One interesting thing I've noticed is that the pain seems to go down once I'm not focusing on it. Seems like a big part of what Sarno says is that it's repressed emotions. I haven't delved into that yet, but simply relaxing and focusing on something else other than the pain (which I've done very little of these past four months, I'm afraid) really is seeming to help.
  11. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Unfortunately the insurance ponzi scheme makes us believe we are not paying anything or much for health care, but the costs of it doesn't fall from the trees. The bureaucracy that is needed to administer it and count all the $25 q-tips, the costs to employers and tax-payers, etc. is a fortune and prolongs a system that does not address about 80% of health issues that are TMS. And, how about the loss of time following dead-end structural solutions that like chiro that are going no where. I remember sitting in the chiro's waiting room at lunch time with all the others--what a waste of time and effort.

    Dr. Sarno says that TMS pain is some of the most excruciating pain he has seen.
    Last edited: Oct 8, 2016
  12. Ines

    Ines Well known member

  13. c90danwaiel

    c90danwaiel Peer Supporter

    Thanks! I'm just finishing Day 3 actually.
    Ines likes this.

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