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  • At Wits End After 10 Months (CPPS or Hernia or Urological)

    Posted by Dave_LongIsland on October 13, 2019 at 1:22 am
    AT WITS END AFTER TEN MONTHS
    IS THIS CPPS, HERNIA, BPH, PROSTATE CANCER OR SOMETHING ELSE?

    PLEASE HELP!
    My husband is a 54 y.o. male who, before December 2018, had been a reasonably healthy person with only a history of some nasty daily tailbone pain (works in IT and sits 15 hours/day) and mild BPH. The tailbone pain was getting worse and worse from sitting and was getting difficult to ignore.

    One morning In December of 2018 he awoke in bed in scissor position with what appeared to be 2 sudden onset symptoms:
    Left side testicular pain and frequent urination (needing to go every hour).

    He was treated with two weeks of antibiotics unsuccessfully. Within six weeks (end of January 2019) these two symptoms grew into something more convoluted. I will try to describe below.

    QUICK LIST OF SYMPTOMS:

    1. Lower abdomen feels large/heavy and appears more rounded than usual at the bottom (24/7)
    2. Feeling of outward pressure and can only wear the loosest clothing (24/7 – mostly affecting the lower abdomen but also rises to upper abdomen as well)
    3. Feelings of weakness/strain in the abdominal wall/diaphragm (this is noticed especially while singing)
    4. Sensitivity to palpitation (lower abdomen, belly button and bladder area)
    5. Pain in waistline crease area (where you bend over at front) while bending or getting up from sitting position (pain can range from achy to sharp)
    6. Frequent urination (sometimes can go hours, sometimes after only 15 minutes!)
    7. Moderate to severe flow issues at times (at its worst takes 10+ minutes to finish urinating 1 drop at a time, this usually only gets this bad middle of night, not all the time)
    8. RT side groin pain with some swelling; pain can radiate to inner thigh or front thigh
    9. Testicular sensitivity; pain can sometimes shoot down from the waistline crease pains.

    FULL LIST OF SYMPTOMS (click link below to download MS Word doc of full symptoms from Dropbox):
    https://www.dropbox.com/s/1dvp6tnnzp…toms.docx?dl=0

    We have seen the following doctors:

    Primary Care Physicians (3)
    Urologists (2, with a cystoscopy performed while asleep – did not fill bladder with fluid, no biopsies taken)
    General Surgeons (2, for hernia opinions; they feel hernia may be secondary to what’s really causing the issues but don’t seem 100% confident either way)
    Physiatrists (2, one of them is offering me a shot in the tailbone)
    Pain Management (1)
    Neurologists (2, who only seemed to care that nothing bad shows on spinal MRI and sent us away)
    Gastroenterologists (2, with a colonoscopy performed;1 small polyp removed and some diverticular pockets found)

    Urologists have advised that he may have CPPS due to overly tight muscles and do not want to get further involved at this point. He has been going for physical therapy for 3 months for CPPS that has not done much yet.

    Hernia doctors feel that he has hernia symptoms, but also other symptoms that they cannot tie in such as bladder area sensitivity, frequent urination and lower abdominal pressure/sensitivity and therefore are telling him that the hernias may be secondary and not the main issue at hand. They are afraid of rushing into hernia surgery and possibly opening a can of worms.

    What I don’t understand is if BPH can cause hernias to stop being asymptomatic wouldn’t this explain his symptoms?
    What could be causing his abdominal heaviness, pressure and sensitivity?

    The following have not yet been ruled out:

    1. CPPS (no tests done for prostate stones & no prostate fluids tested for localized infection)
    2. Hernia as the cause (has had asymptomatic small, fatty bilateral inguinal showing up on scans forever)
    3. Hernia as the cause brought on by BPH (Bladder neck is obstructed but only retaining small amounts under 80)
    4. Prostate Cancer (MRI shows prostate lesion but cannot tell if its inflammation or tumor)
    5. Muscle or Tendon tears in abdominal wall unable to heal on their own
    6. Aggravated nerve such as ilio-inguinal or entrapment (spinal MRI shows no impingement)
    7. Also has 2 non-obstructing kidney stones in RT kidney.
    8. Abdominal or pelvic prolapse (I’ve heard it happens to men as well)

    Tests that have not yet been offered:

    1. NO MRI of belly/abdomen (multiple CAT scans performed instead)
    2. NO Dynamic Imaging (to check if hernias may be what’s bothering him or other muscle injury/issue)
    3. NO EMG Nerve Testing

    We are trying to figure out what his next steps should be, and WHAT THE HECK IS WRONG WITH HIM.

    Should he continue along the CPPS path with more physical therapy even though several months have not helped yet? Should he just go and get hernia surgery?
    Should he try shrinking his prostate by taking dutasteride for 6 months?

    We are desperate for answers as we feel that after 10 months and well over a dozen doctors later we still have more question than answers and he is miserable. He cannot sit, drive or stand for very long (20-30 minutes limit) and because of this has been unable to work. We feel the doctors are not properly communication with each other as a team to try and figure this out and some are even casting us aside not wanting to get involved. They seem to be more interested in the money to be made from illness instead of the science of trying to figure out what is wrong to help someone feel better.

    Dave_LongIsland replied 5 years, 4 months ago 1 Member · 0 Replies
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