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Joined: Mon Jun 19, 2017 11:11 pm
Posts: 215
Location: Canada
Post Desperate
first off I appreciate this board and all here who help each other

I write this post out of desperation. I have been posting and reading this board for quite some time now.

My life has spiralled very far downhill in the last 2 years. Despite many many doctors and urologist visits, I still have no definitive diagnosis for the never ending severe pain I am experiencing.

The only medical test I "failed" was a Urodynamics test over a year ago which resulted in a bladder neck incision surgery. That surgery did somewhat help my difficult urination symptoms, however my pelvic pain has progressively increased to the point where I am now....debilitated, in constant chronic pain

I cannot sit, the pressure in my lower abdomen is severe, including terrible rectal pain.

Tramadol, morphine suppositories only take a small edge off the pain. I have gone from working as a computer network laying on the couch alternating cold packs and heat packs to help alleviate the pain. I have not worked in a year and a half, so now I am also in financial ruin.

Every symptom points to prostatitis, yet tests show my prostate is normal. Recently I had an MRI...negative, and a pudendal nerve block....did not help, pain even worse.

Could someone please provide a suggestion of what I could do next....I am on the wait list for a colonoscopy to rule out bowel related issues (considered unlikely by gastroenterologist, thus the long wait).

I am very very aware of herbal options and have tried many many things.

Sorry for the rant, I cannot go on like this.

Sun Sep 09, 2018 9:47 pm

Joined: Sat Dec 08, 2012 4:30 am
Posts: 831
Post Re: Desperate
Race, I do not like to post anything which might cause someone unneeded stress or worry, but because you are getting a colonoscopy I’ll say this much. I’ve had 3 colonoscopies, and several weeks after each my prostate issues flared up pretty bad. I was told the prostate could become irritated during the procedure, or perhaps it was the bowel prep, but all I know is it caused trouble. I don’t want to imply that could happen to you because I was told it isn’t usually the case but still felt I should mention it. The colonoscopy itself was easy, and if you want advice on how to prepare for the prep let me know. I can give you a few tips you won’t get from your Dr that will make it much easier.

As for your prostate issues I don’t have an answer. I don’t understand my own problem but I’ve been lucky enough to find ways to make it tolerable. I do sugggest avoiding Urologists and keep trying to find a GP who can help you. Maybe ask to see if there are any drug trials going on in your area you would be eligible for. I do wish you the best, and don’t lose hope.

Mon Sep 10, 2018 1:54 am

Joined: Wed Mar 28, 2018 2:48 pm
Posts: 15
Post Re: Desperate
Hi Race, as you already had the sacral block I've a question: have you tried meds like gabapentin or pregabalin. You mention that you get some benefits from cold/hot packs. Also you mention pain with sitting. Almost no benefit from morphine. For me this sounds like a neuropathic/nerve issue. The gapapentin (dosage ist different for each patient) should bring a benefit within 3-4 weeks. If not its proberly something else.

Best wishes!

Mon Sep 10, 2018 6:24 am

Joined: Tue Apr 12, 2016 11:55 am
Posts: 441
Post Re: Desperate
Tramadol is a psychiatric drug, isn't it? My symptoms and problems got worse soon after I was on similar psychiatric drugs, which was for less than a year from what I recall. Those kinds of meds are really problematic when it comes to resolving actual physical pain. I think your issues are nerve-related too. But I think those meds are not good for you, and you should stop them with some sort of recourse asap. I considered getting a nerve block as well, but it is purported to not have a high chance of fully or even mostly resolving pain. It's even stated on the site for a place I looked into over a year ago. Perhaps what you need is a specialty spa clinic where they do a number of non-med based approaches to relieving pain and inducing / helping with relaxation and stress reduction. The human mind has a strong propensity to exaggerate and defer to being consumed by pain and suffering. Not saying that's what is in your case. Yet even if the idea of being back to normal is exaggerated, it could cause perception of pain and circumstances to become traumatized. The pain clinic people love to espouse the idea that we over-indulge in our pain, or "catastrophize". I don't think it is so intentional in the direction of causing my own pain. Yet it's more probable that my brain and body aren't perceiving what's really happening how they need I try to think about it with my mind rather than merely let my brain or body do so much for me. May simply be how I need to do it sometimes, not always.

Mon Sep 10, 2018 3:44 pm

Joined: Mon Jun 19, 2017 11:11 pm
Posts: 215
Location: Canada
Post Re: Desperate

If they ever call me for the colonoscopy, I will seek your advice. I appreciate you sharing your experience. At this point I feel like I have no choice but to do it, so I can rule out some gastro issue that could be a contributing factor.


If it is nerve related, I would expect the nerve block to help....maybe it's the wrong nerve, a ganglion block is an option still. I tried gabapentin, but not in high enough doses. I stopped due to bad side effects. I think I'll retry, hopefully the side effects go down over time.


Tramadol is a pain killer, considered a very mild opiod, similar to codeine. I do agree that I need to work on stress/relaxation techniques. Anti depressants were prescribed to me as well, apparently they can help with pain but that did not work in my case so I stopped taking it.

thank you all

Mon Sep 10, 2018 5:59 pm
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