Any suggestions

[kenn101]

Hi, sorry this is so long,
I have suffered from CPPS/cp or ic for over 2 years, I am 41 years old. It started with extreme testicular pain in my right testicle and difficulty urinating and noticed a large hydrocele that had been there since I was 14 or so was gone. After ruling out any mechanical problems they said I had epididymitis and prescribed 10 days worth chipro and T3s no culture for bacteria in a week I was well enough to work, 3 days after the chipro ran out I was in as much pain as the start. The doctor prescribed 14 days of dyoxicillin no culture test after 4 days intense pain was prescribe 800 mg cifixamin for shock treatment some emtec 30 for pain as I became caffeine sensitive and give culture test which came back negative. After the pain returned prescribe an other antibiotic for 20 days and a week of shock treatment with cifixamin a other culture test ( neg. ) tests for STDs ( neg. ). as soon as the shock treatment stopped the pain came back. Then was given a dre prostate was tender and boggy give 6 weeks worth of chipro, hytrin 2mgsand a letter of referrence to a urologist. Saw uro given another dre less tender and less boggy 90 more days of chipro and more painkillers . It all started again about a week after Chipro ran out.Tried prostate massage but just toching it was too painfull had cystoscopy and hydrodistention ,all that did for me is over extended my neck so that hurt too, no bacteria in semen . 90 more days of chipro this time didn't work as well and up to 5mgs of hytrin it worked well , so started bactrin for 45 day worked well for first 5 weeks then not. Next ( GP saw lab result from semen and had staph uro told me it was normal ) cloxicilline for 3 months and bextra worked until ran out. Since then I have been put on elmiron and told I have ic also use meloxicam or celebrex they work but are not strong enough to relieve the pain enough that I can work as I do manual labour and movement makes me worse the pain turns into a shooting bladder pain . Tried amitriptyline it worked excellent for 3 months was down to it and elmiron. Had another cystoscopy and hydrodistention and started dmso treatment. Talk about more pain I was now prescribed oxycocet and oxycontin was using about 120 mg of oxycodne a day, the first day I used that much I actually felt no pain ( first time in so long ) but in did not last. I bleed on 4 out of 6 treatments and was sick to my stomach for a couple days after. Was prescribed chipro again because I was passing white blood cells a week after the second treatment ( treatment 3 was delayed a extra week because the nurse was so freaked out because of the pain I showed and amount of blood) in help until in ran out ( too bad the treatments didn't first ). I have tried herbal treatments and diet changes nothing has worked yet. Uro want to try cystat but I want to heal more first other than that he is ready to pass my off ( he is pretty negative about any thing other that procedures and gold standard treatments ). Have seen a PT all he was able to do is access my posture my lower back is cupped ( have done this to keep from compressing my L5S disk more as it bulges) and gave me a biofeedback machine, I found very little tension in my pelvic floor except after a pain surge has started. Right now I am taking 300 mgs of elmiron, 14 mgs of meloxicam ( I would take more but was told not to ), 150 mgs of amitriptyline, 10 mg cetirizine, 5-10 mgs of terazosin ( I very it to maintain urine flow) , 50 mgs oxycodone, 1200mgs gabapentin ( working my way up to 2400 mgs ) sometimes flexiral for back pain ( it doesn't help with any other pain ) . The bladder pain is almost constant since the dmso treatment, I also have groin, testicle, penis on the rare occasion and epididymis pain sometimes (more epididymis), pain after ejaculation ( bladder or deep lower abdomen ) also rectal pain ( that I have had off and on since I bulged my disk ) and am heat sensitive now any where on my lower back of abdomen which is why I use flexiral. My uro Can you suggest a pt in british columbia southern interior or any other treatment options.

[londoner]

I'm in no way an expert but my strong feeling is you should try and get off some of these drugs and this cycle of intervention which must be irritating your system beyond belief. I know the pain and irritation is very bad but I'm feeling there is at least a possibility you are provoking it. Have you tried a herbal remedy called Quercetin? I think a lot of people have genuinely benefited from it. It certainly alleviated my own symptoms.

Others may disagree with me or have more experience..

But good luck anyway - sounds as though you've really suffered. You will beat this in time so be positive.

[webslave]

Next ( GP saw lab result from semen and had e-coli uro told me it was normal )

E-coli is not normal in semen.

I do manual labour

Pity about that. I'd advise a lot of rest and relaxation. Your case started with pain in testicle, right? Read this:
https://ucpps.men/lifting-and-testicular-pain-epididymitis

[kenn101]

sorry about saying e-coli ( I have a brain fart ) I meant staph. I was home taking it easy on a long weekend when the symtoms started and I have urination urgency, frequency and had nocturnia that was helped with amitriptyline. thank you for the information and I will pursue it with my GP, he seems to be very diligent in follow ups, I wish my uro was as good. I have tried any accredited quercetin product with no effect but heartburn.

[LightningTree]

Ken101,

I know you do manual labor, but do you otherwise do a lot of sitting still after working all day?

[kenn101]

Not usually a lot of sitting as it irritates the disk in my back. If a am down it is usually prone. The last 4 months I have done next to nothing and I am still in an a flare-up though it was very aggravated by 6 dmso treatments.

[LightningTree]

Hey ken,

Your symptoms involve the bladder, which I only had trouble with when a Uro poked on my prostate.

I'm hoping some other people here will have better insight for you. Also, I guess you are looking for a PT.

Maybe someone here will give you some suggestions.