Urology/Prostate problems - urinary and pain, and bowel issues
I'm not sure if this belongs in this section.
I am a 27 year old male and am getting to my wit's end. I've been dealing with many of these problems for a long time now and have seen numerous specialists and had many scans, no formal diagnosis yet. I simply don't know where to turn now and am starting to lose hope out of frustration.
I understand that not much can be done over the internet, but I'm simply looking for advice or ideas where to turn next. I'd be glad to answer any questions.
Over the last few years, I've had many urinary complaints. Urgency, hesitancy, straining, and weaker stream, burning during urination and ejaculation. Movies were always a tremendous problem and even if i went to the bathroom just before the movie, about 1 hour in (without drinking anything) i would start getting an immense sensation that i needed to pee. I would do everything in my power to not go and make it to the end of the movie, holding it, sometimes being in pretty strong pain after the movie (i've since stopped doing this and go when i get the urge, but I hope i haven't damaged anything doing this).
I also started having constipation-type problems. My stools were soft/loose, but I found i started needing to strain alot to pass a bowel movement, along with bloating, a feeling of incomplete emptying (fullness in rectum). I of course went to the doctor for this and have had 2 colonoscopies (one 5 years ago and another 2.5 years ago) and a sigmoidoscopy (1.5 years ago), none of which revealed anything more than small hemorrhoids and the doctor just simply recommended to increase my fiber. This did not really help at all.
For the last 3 or so years I was doing kegels to try and strengthen my pelvic floor muscles, but over the 1.5 years, kegels seem to hurt deep in my tailbone. For this, my doctor did a tailbone ultrasound to check for pilonidal cysts, but the ultrasound came back clear. I was also sent to do a bone scan of the coccyx, which again, came back clear. Recently, my tailbone pain has been much worse and hurts both when I pull the muscles up (as in a kegel) or when I push them down (as in straining). My tailbone hurts when I tug at the skin over top of it (manually, or simply shifting positions), also, I noticed that when pushing to have a bowel movement, if I push against my tailbone with my hand, it doesn't hurt.
This july, all of these symptoms got started getting much worse, so i decided to get on top of this and mentioned my urinary problems to my doctor, he ordered PSA test which came back normal (1.04 PSA (total) and .29 Free/total PSA), as well as a TRUS of bladder and prostate (Prevoid bladder was 678cc with postvoid residual of 250cc with a retention of 34%) (Prostate 5.3 x 4.1 x 3.6 cm for volume of 41 cc. 1.9 cm nodule in the central zone on right (non specific, and urologist mentioned that based on location its nothing significant)).
I was sent to a urologist to look into this who gave me rapaflo, scheduled MRIs of my Lumbosacral spine as well as SI Joints, sacrum, and coccyx, and had me do a cystoscopy in the beginning of october.
The MRIs came back clear (no focal abnormalities within pelvis incl sacroiliac joints, sacrum, and coccyx) (lumbar, normal alignments, vertebral body heights and disc spaces maintained, no abnormal marrow signal is evident, no abnormal cord signal is seen. Conus medullaris terminates at L1/L2 vertebral level. **1.5 cm intraosseus hemangioma at l4, no abnormal STIR signal seen**. No disk herniation or bulge, no significant central canal or foraminal stenosis, no evidence of nerve root impingement)
Since then, i've started having alot of pain in different parts of my pelvic region including lower abdomen, tailbone, sacral region, low back, deep in buttocks, burning after ejaculation, pain in the area between my leg and scrotum (especially left side) during erection and after ejaculation, burning in my anus/pain in rectum. Overall, I feel alot of dull pain pressure, and tension all over my bottom region.
Throughout this time, I've done several urine tests, which were sent for culture. They all came back with trace amounts of blood but the cultures came back negative so no infection.
I had the cystostopy on oct 1, my urologist mentioned he noticed some inflammation but the volume was down to 25cc, he also took some fluid from in there using a syringe and my GP mentioned he received a report back from the urologist saying that there were no malignancy markers (or something like that).
The rapaflo didn't help much so i was switched to flomax. Currently though, I am not taking either due to distress from retrograde ejaculation and find that my urinary symptoms feel somewhat better but still present.
- urinary hesitancy, frequency, burning (comes and goes), weaker stream
- occasional pain after/during ejaculation in urethra
- pain in low back, sacral area, area between scrotum and thigh
- deep dull constant pain, tension, and pressure in buttocks, especially when i bend over, am sitting.
- pain and burning sensation in/around anus
- low abdominal pain (around pubic bone) that comes and goes (as well as a feeling of tension)
- abdominal bloating/pain that moves around
- constipation (have to strain alot to pass a bowel movement despite bowel movement being soft or loose)
- have bowel movements very frequently, but small in volume.
- feeling of fullness in rectum/incomplete emptying
- bloating/abdominal fullness
- near constant dull pain in tailbone and area between anus and tailbone that gets worse when straining bowel movement or performing kegel-type movement.
- the stress from all of this caused me to drop 10 lbs which i cannot seem to gain back.
-Colonostopy (2009) - normal
-Colonostopy (2012) - normal
-Sigmoidoscopy (2013) - normal
-Bone Scan (tailbone) (may 2014) - normal
-Tailbone ultrasound (august 2014) - normal
-Transrectal ultrasound (july 2014)) - 41cc prostate with nodule (described above)
-Cystoscopy (october 2014)) - 25cc prostate (no further mention of nodule)
-Several urine tests/cultures (july-october) - trace amounts of blood, no infection
-Lumbar mri (no contrast) (september 2014) - normal
-SI, Sacrum, and Coccyx mri (no contrast) (september 2014) - normal
I hope that you could help shed some light on my situation.
Thank you very much
Your situation is quite complicated and far beyond the simple general questions we typically get here. You should get a second urology opinion from a tertiary care university medical center. You have significant symptoms and negative testings. You have not yet had a urodynamics test (bladder pressure testing). One possible diagnosis is interstitial cystitis which would account for some of your symptoms and not respond well to the medications tried so far. Good luck.