Hello all,
Sorry this may be long but I am keen to know if I am 'unique' with the symptoms I am having nearly a year post Radical Prostatectomy.
What led me to the Urologist in the first place was discomfort after peeing, not real pain, more a sense that I hadn't finished. Far worse after a bowel movement and I was wondering if 'something was irritating something else'! GP prescribed antibiotics to no avail. Saw urologist and he felt the prostate was firm on one side and after an mpMRI of pelvis and CT scan of abdomen I received a non-diagnosis of PI-RADS 3 and a scan suggestive of possible prostatitis. We agreed to wait 3 months and during this time I suffered these same effects. Perineal 'stinging' and general discomfort in that area with the odd feeling of not having finished. I also had a disrupted flow. Despite a follow-up mpMRI showing PI-RADS 2 we go for a template biopsy and out of the 40 cores taken cancer was discovered in 1mm of one of the cores. Diagnosed T1C Gleason 6 In February 2019. I decided to have the op (Anxiety too high for AS).
March 2019 operation went well although I did then have some complications (possibly as a result of daily clexane injections which do not seem to be routine in other countries) which started with cellulitis near one of the wounds (despite daily showers) and a 'large collection' in my pelvis. Another CT scan showed this to be about the size of a large apple which explained some of the discomfort. I also had a very bad reaction to antibiotics (at one point they had me on 4 types) which continues to this day (teeth pain, tendon issues). Anyway, by December 19 I was actually feeling better in that area and put most of it behind me. Whilst being investigated for the antibiotic issues I had an MRI of my spine as well as abdomen and pelvis (again). Those were done in November of last year and the abdomen/pelvis was clear outside the 'collection' which is now a 3cm 'ball' still resolving. Spine showed some degeneration at L5/SI but not 'serious' although I do suffer from back pain down there (pretty common I think!).
So, roll on to February 2020, and I have the same symptoms as when I first had this problem!! Stinging sensation in perineum after peeing and much worse after bowel movement with a dull ache that remains quite a long time and even extends into the shaft of my penis. I have noticed my tailbone and 'sit' bones are a bit painful due to my job which is annoyingly sedentary and I can sit for many hours which is something I need to sort out as it is causing me serious back pain! Anyway, my questions are:
1) Anyone else had this kind of discomfort 'come and go' even after having the prostate removed?
2) Could this mean some kind of spread? Last MRI in November was clear so I am certainly hoping not!
3) Could my original symptoms have been more orthopaedic/muscular/nerve generated rather than from the prostate, and the prostate just upped the irritation level, almost by accident?
My Urologist is high up the list of famous ones, but seems more interested in ensuring his handiwork is not the cause, so cannot really advise on my questions (which seems odd to me) and my GP just chucks co-codamol at me (not great) and isn't sure either. I have heard of pudundal nerves and Piriformis syndrome in the last few weeks and both of those could be candidates but I never receive a definitive answer and the people I talk to seem to bat my theories away (fair enough, I am not a doctor)!
As for spread. My final diagnosis is Gleason 6, T2A with negative margins (in-situ pathology) and it totalled 1% of my prostate volume - so not very big by any measure! I am hoping this will not be a cause for concern. 3 PSA tests were 0.006, 0.006 and 0.016 so far.
Anyway - sorry for babbling on. If this resonates with any of you please let me know as I thought a year after the op, with no prostate, I would not be suffering what feels a bit like prostatitis still!
Cheers all for your help and for reading this!
Mark