I’m a 45 year old male that has been fighting what I have been diagnosed as chronic non-bacterial prostatitis for many years. About 11 years ago I suddenly had frequent urges to urinate (no burning, just felt the need to pee all the time), I went to my PCP and he said prostate (in which I didn’t even know what one was let alone how it was checked) was “boggy” and wasprescribed antibiotics. The symptoms went away for about 6 months and returned the following January (2008). He referred me to a Urologist and he also said prostate was “boggy”. He looked at a CT scan that I had done (for stomach pain about the same time) and said that I was constipated, don’t know if that helps any. He performed a cystoscopy and said there was a little bit of inflammation. After a year or so of the same symptoms on and off without any successful treatment, decided to get a second opinion. I saw another Urologist and got basically the same diagnosis. He also performed a cysto. while performing my vasectomy with the same results, a little inflammation. After about 2 years as his patient and trying several different meds, I went to a Urologist at Baylor and during the first visit he wanted to do another cysto. for himself. I didn’t want to do that, so I never went back. I then saw another Urologist and she said that upon doing my DRE that I had hemorrhoids (internal?) and pelvic muscle spasms and needed to try Biofeedback, because she thought that initially it might have been Prostatitis, but now the pelvic muscles were “confused” and that Biofeedback and Kegel exercises would help. I tried twice and immediately knew that wasn’t going to help. That is the last Urologist I’ve seen, since Oct. 2015. I went and saw a new Urologist today and he seems to be the worst. Wants me to come in on Friday to do a urine flow test and bladder ultrasound. He just came from surgery (ran really late) and had a waiting room full of patients waiting, so I may give hime the benefit of a doubt...this time.
I don’t fit the traditional Prostatitis or OAB symptoms, because there is never any pain while urinating or during sex, back pain or fevers (sometimes get a little nausea like being kicked in the groin). I do have a weak stream only during my flare-ups, otherwise pee like a horse. Never had any leakage, no blood or infection in the urinalysis. Where I do fit is that I am overweight (6’2” – 265 lbs., but was about 40 pounds lighter when this all started), I sit most of the day (at a PC, but try to get up and walk around as often as I can remember to) and am somewhat inactive. During a flare-up, after urinating I can wait a few seconds and always push out a little more once or twice. Standing up takes away the urge a little, but does get worse if I try to do any physical activity. My rectum up to behind my pubic bone feels very irritated, which makes my whole body sensitive to anyone even touching me or loud noises. I can urinate and then have a bowel movement and then urinate a lot right afterword (don’t know if that helps either). I have severe obstructive sleep apnea, so I do sleep with a c-pap. When I don’t use it I get up about 4-6 times in about a 7 hour period (even when I’m not having a flare-up). Flare-up’s can come unexpectedly every few weeks or every few months, there hasn’t been any real consistency or pattern. They can last from as little as a couple of weeks to a couple of months. Ibuprofen, anti inflammatories, herbs, cutting out caffeine and spicy foods (don’t ever drink alcohol or smoke), walking ect. don’t seem to have any affect or give any/much relief. My current PCP automatically sends in an RX for Cipro whenever I start to have a flare-up, that seems to help more often than not (or may just have some Placebo effect, however nothing else does). I know that stress/anxiety contribute to my discomfort, but after this many years it’s hard not to. One Urologist once told me to go to Walgreens and buy some “Stress Tabs”, but that didn’t help either. I’ve read that some Dr.’s prescribe Valium to help? I do remember when I was about 20 there were nights that I would have to get up several times to go to the bathroom, but never excessively (or urgency) during the day. I did have some kind of infection about 22 years ago where there was pus coming out of my penis and it burned to pee. There was no sexual activity, so I know it wasn’t because of that and it went away on its own. That was 11 years before my current symptoms started, so my bet there is no correlation between the two, but just in case throw that out there. Between flare-ups I don’t generally have any issues, I can go 4-6 hours between having to go to the bathroom and even then it’s not urgently, no irritation at all, I go back to having practically a normal life. I’ve had the bladder scan done several times to see if I’m emptying the bladder and it’s always empty. DRE exams are almost always “boggy”, whatever that means. I do remember that on follow up visits they would say that the prostate felt “normal” again. What I haven’t ever had done are CT or MRI scans of the pelvis during a flare-up, I’ve read that inflammation can be seen by those?
This new Urologist says that the most effective drug is Flomax, it doesn't help the current flare-up, but helps prevent the next? Anyone heard of that? I do remember that I took it for a while several years ago and don't remember it helping at all. I don't know how long I took it for, so possibly didn't take it long enough? He is one of those Dr.'s that believes that all Prostatitis cases are due to infection even though not detectable.
Long story short, I accept (but not happy about it) that this may be the pattern the rest of my life. During my flare-ups my quality of life sucks and I am miserable. What I need is something that can help me tolerate them during their worst. If anyone has any ideas of what could be causing them or what I can use to ease the tension/stress during the meantime, please shoot them my direction. I'm just sick of it and really at the end of my rope.
During these flare-ups my quality of life is nil and not only affects me, but everyone around me as well. I see no end to this pattern and dread knowing that there will be a next flare-up, just when is the question. This has prevented me from going back to school and even pursuing other employment opportunities. I’ve exhausted myself researching and have run out of places to go, would you have any ideas or suggestions of what it might really be?