BPH

[todster]

Fourteen months ago I underwent TURP surgery for an enlarged prostate The procedure seemed to work because my urine flow is now normal. However, the surgery has left me with chronic pain in the perennial (prostate/rectal) area. My urologist, who claims not to know what is causing the pain, has prescribed at least a dozen different medications for the pain. None helped. I don't feel the pain first thing in the morning, after a night's sleep. But it gradually comes on during the day and is quite intense by late afternoon and in the evening. The pain is really bad when I am seated. My sole relief seems to be to remain standing, hardly an ideal solution. I suggested to my urologist that a nerve may have been damaged during the surgery. He dismissed that suggestion. Living with chronic pain is depressing and debilitating. Has anyone else had a similar experience after TURP surgery? Thankyou.

[mrcoyote]

Sorry to hear you are going through this after your surgery. I know how the chronic pain works on your overall state of mind, so I know how important it is for you to find a solution to this and not just try to live with it. If your urologist cannot come up with something that can help you and has no idea at this point, I think if it were me, I would seek out another board certified urologist and get their opinion of what was done and why you are now going through this so many months later. I don't know about the damaged nerve theory, since I am not a doctor. But it concerns me when doctors seem to run out of options and can't help you out. Just like a persistent automobile problem...if your mechanic can't find the problem, you go to another one. Right? The doctor who did the surgery should have no problem with that at all. Again, sorry to hear you have this, but I think it's time to move on this.

[todster]

Hi mrcoyote: Thanks for your sympathetic and helpful reply. I was beginning to think no one cared on this forum. Have to agree I should have gone for a second opinion a long time ago. But I thought since my original urologist started the whole thing, he should finish it. So far, he's done nothing to solve my problem. After months of different meds (none good for the general system), three weeks ago he decided to "go in again," which meant a second uncomfortable TURP -- chatheters aren't exactly fun --along with a hospital stay. Didn't help at all. In fact, the pain is worse. As you suggest, my next step is to ask my GP to refer me to another urologist. Fourteen months of chronic pain is not acceptable. Thanks again for your kind interest in my problem. Todster.

[mrcoyote]

OK>now I'm REALLY confused! You had a TURP done and it restored your urine flow to normal, as you said. Then, you experienced ongoing pain that the urologist said was not a nerve and tried many pain medications to no avail. Right so far? His response to the "cure" was another TURP, which he did three weeks ago. That's the part I don't understand. Your urine flow was good, right? I can't understand how another TURP would solve the pain problem. I can imagine that you aren't comfortable now after the second surgery, and I'm sure they are going to say you need to wait now and see if the pain goes away
in time because of the surgery. What did he say when you asked him how a second surgery for urine
flow would solve the "pain" problem you've been having for so long?

I know the procedure myself (the laser version) and no, it's not fun. I did it last year out of desperation and no other options. The monster catheter bothered me, no doubt....but I kept thinking about the eventual result and that it would be over soon. So, I give you a lot of credit for going back to have the
whole thing done again, but in my mind, I can't see how that fixes the pain problem. Not being a doctor
I don't want to say too much more, but.....you obviously know what I'm thinking.

I also know it's hard and frustrating to try to get somebody to listen. Chronic pain can affect
everything you do, every minute...like chronic back pain, etc. Don't give up on it....there are people
out there willing to help you if not this particular urologist.

If there is a urologist on this site (and I thought there was), please respond to this post and let us
know your opinion and why a second TURP would be done for pain. It does seem that people are slow
to respond here and sometimes I felt like the only one posting (I still do!), but I'm not giving up.

Hope you heal up fast.

[Don't do it!]

Todster,
I "feel your pain"! In Nov. 2006 (more than 2 1/2 yrs. ago) I had TURP surgery to reduce the size of my prostate. I am still suffering horrible chronic pain! I have been to 6 different urologists and all just shake their heads and say they don't know why or what to do... I have worked with an excellent Pain Mgt. Physician. We have been thru every drug possible, some worked short term but all eventually made me physically ill and I had to get off them. Right now the only thing I can take is Lyrica, Darvocet and Tylenol - sometimes they help for 30 to 45 minutes and sometimes not. But I have constant splitting headaches with the meds as well as the chronic prostate/rectal pain. We have tried 3 spinal cord stimulators, every "block" possible, and a morphine pump - all with no success. I have tried acupuncture, hypnotism, etc. Sitting, driving and standing are all next to impossible. My only "comfortable" position is reclining. I lay down at home all the time. I have a zero gravity chair at work. My family drives me to and from work each day (35 miles one way!) My wife and I can't go out socially, travel, etc.
Maybe together we can find a doctor with some answers... Please contact me at [moderator note: e-mail address has been removed]

[todster]

Hi: don't do it:
Thanks for your reply. After much research on my part, I am convinced my pudendal nerve was damaged during the TURP Surgery. It can also cause a problem called Pudendal Nerve Entrapment. The urologist who did my procedure won't concede that. They never admit to errors. I have tried another urologist who agreed it could be Pudendal Nerve Entrapment. He gave me a couple of nerve block shots. Didn't help. My own urologist gave me dozens of different meds. Mostly expensive pain killers with nasty side-effects. None helped. There are a number of pudendal nerve sites on the net -- Pudendal Help, Pudendal Nerve Damage. Just type in Pudendal Nerve and they should come up. There is also a forum like this one. Trouble is, it is mostly desperate guys like us relating their symptoms. There are no helpful responses. I have yet to see a urologist on the forum. Also the Pudendal Nerve sites say the problem is extremely complex and there are only a handful of surgeons in the world who can perform surgery to correct a pudendal nerve problem. The leading surgeon is in France and there are several in the U.S. I live in Canada and certainly couldn't afford to pay for surgery in the U.S. I fear I am just stuck with the problem and will have to get by on pain killers -- all of them containing codeine. which is horribly constipating. Good luck in your search for a cure. Perhaps you could advise me if you discover anything. From Todster.

[Don't do it!]

Todster,
It's good to finally learn there are others out there like us! Thank-you so much for responding to my previous post. I went to the Pudendal Nerve Damage link and really found a wealth of info. Thanks for that info. Thru that link I found my way to another link - TIPNA - then from there I went to "Forum Home" and then to "Looking for a Dr.". They list a Dr. in Toronto, Canada... They also listed one here in my area, Phoenix, AZ. I don't know where in Canada you live but maybe that's close...
It's difficult getting one's hopes up again after being disappointed so many times in the past but it also doesn't do any good to just "give up". Thanks again for communicating and the info. Let's keep trying!

[todster]

Hello Don't do it:
Thanks very much for putting me on to the doctors list. I had no idea that there was one in Canada. Unfortunately, I live on the west coast and Toronto, of course, is on the east coast. That's a long way! But the way I feel now I would be willing to go anywhere to get some relief. Since I know exactly how you feel, you do indeed have my sympathy. The trouble is, although the pudendal nerve sites contain lots of info, they also indicate how difficult this problem (if it is pudendal nerve injury) really is. Tends to make one feel even more hopeless. I do hope the doc in Az can help you in some way. Thanks again and good wishes in your quest for relief.

[todster]

Hi again: Thought you might be interested in viewing this website: RateMds.com. If you are thinking of consulting the AZ doc, you may want to see on this site how he is rated. The site gives opinions of patients who have consulted various docs. Some of the frank comments on some docs are chilling.
You just enter your State and then type in the name of a doc. You can look up your own GP if you care to.