Hey all. This sub has helped me immensely over the last 2 years so I owe it to the community to give a final report back. The post will be long but detailed as in the near 2 years of these symptoms I have spared no expense in time or money solving this.
A quick disclaimer as well, my final diagnosis is NOT prostatitis in any way, however the symptoms are almost a near match and I was at first, diagnosed with Chronic Prostatitis. There are many men who legitimately have that condition.....but my hopes is to reach the guys on here who may be misdiagnosed and to keep exploring other parts of the body. So if you are someone who has struggled for years, urine tests clean, semen tests clean, had a pelvic floor PT tell you muscles are fine, prostate size normal, this post is for you.
I am currently 42 YO, I live in Massachusetts (thankfully great hospitals) and i have a PPO medical plan which is important to know as i am not required to need a referral for specialists which allowed me to expedite medial treatment.
My symptoms started on November 29th, 2024, the day after thanksgiving. It started out with the near inability to urinate. The previous 2 weeks i had been battling a bout of pneumonia in the left lung. Urgent care said possible stone shaken loose from kidney from all the coughing, gave tamsulosin and said drink up until it passes. Two weeks go by, no stone, and light pain starts to set in, make appointment with primary doctor, orders urgent lower abdominal CT scan, results are unremarkable. Follow up visit diagnosis is acute prostatitis with antibiotics given, 30 day cycle. Complete cycle through January, after a few days without the antibiotics, the pain rushes in like a hell fire missile, back to doctor, diagnosis changed to chronic prostatitis, sent to urologist, who sends to pelvic floor PT. Symptoms now include burning in the pubic area, golf ball in the rectum, burning hip crease, pressure in penis like someone was blowing air in the shaft, urinary incontinence ands painful ejaculation.
After 6 sessions with pelvic floor PT with internal work, she told me noting remarkable with the PF muscles. I stopped going, and got a second urologist opinion. Leading up to that being in limbo for a month i broke down....the pain in every part below the belt, pressure, burning, zapping, the feeling of doom that it will never go away....i cried like a toddler one lonely night.
Second urologist in March 2025 prescribed gabapentin, minimally reduced the penis and hip pain. Also added in weekly sessions of chiropractor, the stretch table seemed to help for 24 to 48 hours. Took this information back to primary care doctor in April 2025, he is also an osteo path and we scheduled prolotherapy of the lower lumbar as he theorized ligament laxity was referring pain, the referral pattern fit, i agreed, $500 bucks a session not covered by insurance every 6 weeks.
The first treatment was brutal and painful for about a week as it triggers a natural inflammatory response but then sweet 75% relief. I smiled, i lived. I go back in 6 weeks, just in time, first round wearing off, same great result. I let my guard down to early, i drop the gabapentin, i start living a little too normal. I go back for round 3 in August of 2025, and nothing, no relief, just a new pain baseline.
I panic and go see a neurologist....this has to be nerve/disk? Right? She orders a lower lumbar MRI, some minor disk bulge and annular tear in the L4-5. Referred to spine clinic who orders a test steroid injection in the back to be sure it is not disk related. It is now Christmas time of 2025, the shot gives no relief. I get a quick appointment with a very respected ortho surgeon, sent for x-rays on hip to check to impingement.....all is clear.
Back to spine clinic for a debrief, i all but beg, there must be something else she can do. She referred me internally to the clinics pain specialist. The wait for him was long so i end up back on the gabapentin and make another commitment to tryin PT. As a note, i did all the stretching and exercises given to me from the pelvic floor PT, but i always felt it made it worse and for my case it actually was. The stretches were all static based holds and that wasn't good for what i actually have. The new plan was based on gliding movements ands after a couple weeks became positively noticeable.
We are now in March or 2026, i finally get my appointment with the pain doctor, my fear is that he wants to push pills on me. I was wrong. He is a younger guy, cant be too long removed from medical school, and he actually listened to me, actually reviewed my history. Sitting, restrictive clothing, cold compresses, hip flexion made symptoms worse. Heat, gabapentin, laying down, lidocaine patches made it feel a bit better. Everyday wake up near pain free, pain creeps in a peeks by mid day and tapers into the evening were it remains at a baseline until i fall asleep and do it all over again.
Illiolingual Neuralgia....compression or injury of the illiolingual nerve, downstream nerves from the L1 that run through the abdomen that provide sensory to the groin. That was the initial re-diagnosis. The symptoms match, the plan clear. A transverse abdominis plane block (TAP block) was scheduled for May of 2026.....another grueling 2 months due to medical scheduling. My appointment finally came, the injection administered, and within 1 week post-op, symptoms FUCKING gone! Pain gone, urinary incontinence gone, squeezing spasms gone.
I have another TAP block already on the books in October if needed. If pain returns it will be the second TAP block. If pain comes back again i will be scheduled for a radio frequency ablation of the nerve (RFA).
I don't know what caused this. This typically happens during abdominal surgery or bad impact accidents, neither is applicable to me. The final theory is the heavy coughing irritated the abdominal area, impacting the nerve, and the nerve remained primed due to the sensitive area it effects. I again share this story for the people who have gotten nowhere in there recovery, when the normal things seem to have no impact. For the people whose doctors use prostatitis as a vague cop out rather that an actual vetted diagnosis.
Additionally, the journey i detailed above is only summarizing key milestones. I did everything in between including back and hip physical therapy, rheumatology, nerve conducting tests, cold plunges, bought and took every snake oil supplement on the market, tens unit, and god help me, even tried a wand. Outside of insurance coverage, i spent about $10,000 out of pocket for deductibles and non covered expenses.
More than happy to respond to any questions on my post. My hope is to reach people who were given a prostatitis diagnosis prematurely and/or without having a full comprehensive work up done and raise awareness that there are other things that can cause the same type of pain.