CATHETERIZATION and Peyronie's

[Skjaldborg]

Hi All,

I just had an emergency appendectomy on Monday-boy was that fun. Since I got my Peyronie's after a mild injury, I made sure to ask the medical staff if I could forgo a catheter during surgery if possible. They were very accommodating regarding my fear that my Peyronie's could be made worse if further injured and said that they could skip the catheter. If others on this forum will be getting non-Peyronie's related surgery that typically entails the insertion of a catheter, ask to see if you can skip it. If it's a short surgery (under 2 hours) they may say OK.

Best,

Skjald

[Woodman]

I had surgery in July of 08 and I told the surgeon about my peyronies and my concerns with the catheter. He was also very understanding and gave me what they called a Texas catheter. It has an adhesive like funnel on the end that adheres to the head of your penis instead of the catheter having to be inserted in your urethera.

Unfortunately the morphine they used during surgery I had a reaction to and ended up having to get a regular foley catheter because I could not urinate. I made them call in a urologist that dealt in peyronies and was a specialist to insert the catheter.

Hopefully this will help someone like skjaldborg mentioned too. If the doctors tell you that a catheter is needed ask about the texas catheter. Its totally none invasive and when your done using it you can just peel the contact tape off yourself and youre done.

[LWillisjr]

There is also a type called a condom catheter and is esactly what you think it would be. A tube attached to a condom like device that you roll onto your penis.

[Fred22]

There is also a type called a condom catheter and is esactly what you think it would be. A tube attached to a condom like device that you roll onto your penis.

The problem with this is, if you have urinary retention due to anesthetic, the "condom" catheter won't do you any good.

Fred

[LWillisjr]

Good point.  Was just pointing out that are several different types.  I wasn't aware of the condom type until a few years ago.

[Fred22]

I have a urinary retention condition that is likely to require cathing myself.  I have read several posts warning that this could worsen Peyronie's symptoms, but in my case I may not have a choice.  I've been doing some research on catheters and it seems that the weapon of choice for many is a 14 Fr coude tip catheter.  Many recommend Bard or Rusch.  I've been reading about Cure catheters (made by Cure Medical) and many users say they are very safe and painless (fire polished eyelets, high quality materials, etc.)  Just wondering if anyone here has any experience with self-cathing and what recommendations  might be offered.  I want to minimize the chances of further injury.  Thanks.....Fred  

[LWillisjr]

There are also condom catheters. Is that a possiblity? This would not require you inserting anything in your urethra.

[Fred22]

Condom catheters won't work for urinary retention.  You just pee into the condom type thing.

[skunkworks]

Pentox would seem to be the drug of choice if you are looking for a preventative.

Also might be worth having a word to people who are experienced in catheterisation, to make sure you do it in the least damaging way. Seems like you've already done some research on finding the best catheter, do you have any say in how long it is? Minimum length would be best I would think.

[Old Man]

Fred22:

Couple of questions for you. 1. Do you have what is called uninary incontinence, or 2. Do have a problem getting your stream started?

Each situation requires different approaches to the problem. It seems from our post that you are having a problem getting your bladder to empty. If that is the case, a catheter is required and one must be extreme careful in inserting it into your urethra and on up into the bladder.

After my radical prostatectomy, I had 10 bladder neck dilations to overcome urinary retention due to closing up of the neck, etc. My uro showed me how to insert it without causing any pain or problems. The most important thing was that I use plenty of lube (KY gel) into the urethra opening and as well on the catheter.

You should go slow and practice inserting it before pushing it all the way in, etc. Let me know if I can help in any way.

Old Man.....

[Fred22]

No urinary incontinence.  I do sometimes have trouble getting stream started and often have trouble emptying my bladder.  My primary problem is a psychological one...paruresis or "shy bladder".  I've always had the problem but until I got Peyronie's it didn't have a significant impact on my life.  I was always able to just go to a stall and pee basically anyplace. Peyronie's changed that from the very first day I experienced the initial symptom (which felt like a UTI).  My paruresis spun out of control to the point that I even sometimes have trouble peeing at home.  I had to give up my home music students because I couldn't pee with students or parents in the house.  Cognitive behavior therapy has helped many but right now I don't have time to go through a whole "desensitization" therapy plan.  I have multiple health problems which are going to require me seeing several specialists.  I'm especially concerned with one in particular.  I injured my ear last month while removing a rubber earplug.  I've had extreme dizziness and nausea ever since.  The otologist exam is lengthy...several hours, and I know I would have to pee during that time and would not be able to do so.  I've also lost 35 pounds in the last few months (without trying to lose weight), constipation and other GI issues, so I have to see a GI specialist and I'm sure a colonoscopy will be required (I fear I may have colon or prostate cancer)....wouldn't be able to pee there either.  I know that people who don't have this problem feel that when you have to pee badly enough you'll just pee, but that is not the case with extreme paruresis (a social anxiety disorder). There have been cases of people going for up to 48 hours without urinating.  I just feel at this point in order to get the medical attention I need, I have to take the risk and learn to cath.  Many paruretics take this route.  It's not something I'm looking forward too, but I think it's my only option at this point.  Between all these symptoms (dizziness, nausea, constipation, penile pain, not being able to pee when I get up during the night), plus the Peyronie's I'm frankly to the point that life is just not worth living.  Every day I contemplate ending it all....complete and utter desperation...so there's my situation....

[Old Man]

Fred:

I know the feeling about not being able to pee in public restrooms or most any place. Prior to my prostate surgery, I always used stalls in public places in order to just get the stream started and then most of the time could not finish emptying my bladder.

After the surgery, the doc told me that all I had to do was relax and imagine doing somthing else while trying to pee. Along with exposure to many nurses and doctors after that, I lost my inhibitions about peeing. Now, I can do it anywhere.

Part of my problem was that I thought that every other male had much more dimensions than me and I was not able to realize that I was average or above.

Anyway, take care and you should overcome the problem soon.

Old Man

[Fred22]

Fred:

I know the feeling about not being able to pee in public restrooms or most any place. Prior to my prostate surgery, I always used stalls in public places in order to just get the stream started and then most of the time could not finish emptying my bladder.

After the surgery, the doc told me that all I had to do was relax and imagine doing somthing else while trying to pee. Along with exposure to many nurses and doctors after that, I lost my inhibitions about peeing. Now, I can do it anywhere.

Part of my problem was that I thought that every other male had much more dimensions than me and I was not able to realize that I was average or above.

Anyway, take care and you should overcome the problem soon.

Old Man

Wish it was that easy.  Apparently your shy bladder problem was not so extreme...a mild case.  Mine has nothing to do with size issues.  In fact, most people don't really know the root cause of their paruresis.

[Fred22]

Pentox would seem to be the drug of choice if you are looking for a preventative.

Also might be worth having a word to people who are experienced in catheterisation, to make sure you do it in the least damaging way. Seems like you've already done some research on finding the best catheter, do you have any say in how long it is? Minimum length would be best I would think.

Well, it has to be long enough to get into the bladder.  The Cure catheters are 16" long but, of course, the whole 16" doesn't go in.  Not sure why they're so long, but from my research they seem to be the most widely recommended by users, most of whom say they are painless and there is not even irritation the next time you pee normally.  I'm ordering some free samples.

[Fred22]

After robobic prostatectemy on Sept. 22, I had extreme urinary retention after the catheter was removed.  On Oct. 31 my surgeon performed a cystoscopy and said everything looked very good and was healing just the way he liked to see it.  Since my retention was still pretty severe, he had a nurse teach me to self cath.  After about a week of cathing when I would awake during the night (hardest time for me to pee) I stooped cathing because of the pain.  I haven't cathed in 11 days now and still wake up between 2"00 and 4:00 with buring pain that often continues throughout the day.  I e-mailed my surgeon about this earlier today but I'd be interested in opinions from forum members RE cathing.  I've read conflicting opinions RE cathing and Peyronie's.  Many say that since cathing involves an entirely different part of the penis it has no effect on Peyronie's...others (usually not doctors) say that Peyronie's sufferers should never self cath. Any opinions on the subject will be appreciated.  BTW, my cancer surgery was presumably successful....all negative margins, no lymph node involvement...cancer confined to the prostate capsule which was removed.  My bladder function is improving and my incontinence is much improved.  I only use 1 pad a day and don't need one at all when sleeping.  Let me hear from you guys on this subject.  Thanks.....Fred

[Old Man]

Fred:

I self cathed for many days after removing the Foley after 32 days being in, etc. Had no serious problems other than the burning sensation you experienced. It soon went away and by self cathing, it saved many trips to the ER and doc's office for a nurse to do it.

There should be no connection between self cathing and Peyronies Disease. The cath goes through the third chamber of the penis and in no way is connected to the corpora, etc.

Old Man

[Fred22]

Fred:

I self cathed for many days after removing the Foley after 32 days being in, etc. Had no serious problems other than the burning sensation you experienced. It soon went away and by self cathing, it saved many trips to the ER and doc's office for a nurse to do it.

There should be no connection between self cathing and Peyronies Disease. The cath goes through the third chamber of the penis and in no way is connected to the corpora, etc.

Old Man

My thoughts exactly...but I don't understand why I'm still waking up in pain every night about the same time (between 2:00 and 4:00) and I haven't cathed for 11 days.  Maybe you were further along on the healing process when you started to cath or maybe I just have some other issues with the urethra.  I had intermittent urethral burning even before I was diagnosed with PCa.  I only had the Foley in for 8 days, and dr. had me cathing less than 6 weeks after surgery.  Wish I could get it to work for me without pain because I still struggle most nights to pass urine.  However, last night I got up 3 times, and the first two I started a strong stream immediately.  The third time there was more hesitation, but I was still able to pee.  However, my penis was already burning before my third trip to the bathroom.  I may have some of the same type inflammation that George has reported here.  Maybe a more thorough urine analysis is needed.  Thanks for the response, Old Man.

[Old Man]

Fred:

Almost forgot about an item that might be your problem and that is what is called a spastic bladder. The nerves that control urine retention and release get mixed signals from the brain and sort of clamp up and in the process hurt. It also will not let the bladder neck open to release the urine. This happens more often when the bladder is full, etc.

They did a urine retention test on me two weeks after the catheter was removed the first time. They did a cystoscope first and when it was removed urine flowed everywhere for a short period of time. After that, they did a cath to see if any more would run out and it did. This indicated that I was retaining urine after urination. So, this procedure might suggest if you have the nerve problem.

Old Man

[Fred22]

Fred:

Almost forgot about an item that might be your problem and that is what is called a spastic bladder. The nerves that control urine retention and release get mixed signals from the brain and sort of clamp up and in the process hurt. It also will not let the bladder neck open to release the urine. This happens more often when the bladder is full, etc.

They did a urine retention test on me two weeks after the catheter was removed the first time. They did a cystoscope first and when it was removed urine flowed everywhere for a short period of time. After that, they did a cath to see if any more would run out and it did. This indicated that I was retaining urine after urination. So, this procedure might suggest if you have the nerve problem.

Old Man

Could be...will talk to dr. about it.  Actually though, my pain started after the cystoscopy (presumably due to insufficient healing of the urethra), then I learned to cath right after the cysto.  No pee came out after cysto, but when I was cathed I peed a lot.  Last night I got up 3 times overnight and peed without any problem and still woke around 3:30 with this burning pain.  I did have some problems peeing just before I went to bed...start/stop stream, having to "push" a little with my breath etc. This may have set me up for the pain that followed at 3:30...don't know.  About a week or 2 before the cysto, the dr. put me on oxybutynin for spastic bladder and it just locked my bladder up......had to get off and get back on Flomax.  I think he put me on the oxy. because he misunderstood my explanation of some of the symptoms I was having.  After I got of the oxy. my bladder function began to improve and it seems to improve a litle more each day.  The real problem is this mysterious pain that just comes on regularly around 3 or 4 in the AM.  Intrestingly, for the past 2 mornings, I've been putting a small throw pillow under my lower back when the pain starts and this decreases it.  Strange symptoms....Thanks for your input.  I hold your opinions in high esteem.
Fred  

[Old Man]

Fred:

You mentioned that a pillow in the lower back helped release the pain. I use a small pillow against my lower back all the time - especially at night. Somehow, it seems to release the lumbar nerves where some of the nerves for the urinary tract seems to come from. It also helps with any lower back pain that might develop during the daytime when just siting on a couch or chair.

Since you don't have the gland there anymore, you may not have healed properly where the gland was removed. Strongly suggest that you get back with your uro and get his diagnosis about the pain, as it should not be this bad this far out from surgery. It does take time for the urethra and urinary tract to heal after the surgery though.

Keep us posted on how things work out for you.

Old Man

[Fred22]

Fred:

You mentioned that a pillow in the lower back helped release the pain. I use a small pillow against my lower back all the time - especially at night. Somehow, it seems to release the lumbar nerves where some of the nerves for the urinary tract seems to come from. It also helps with any lower back pain that might develop during the daytime when just siting on a couch or chair.

Since you don't have the gland there anymore, you may not have healed properly where the gland was removed. Strongly suggest that you get back with your uro and get his diagnosis about the pain, as it should not be this bad this far out from surgery. It does take time for the urethra and urinary tract to heal after the surgery though.

Keep us posted on how things work out for you.

Old Man

Called uro on Monday and talked to nurse RE pain.  She said Dr. would not be in but come in Tuesday for a nurse's visit.  I went in and gave urine sample which turned out to be negative.  I'm starting to wonder if maybe the pain is Peyronie's, but really doesn't feel like it.  Was getting painful erections due to Peyronie's before surgery...now no erections at all yet (did feel like I got a small rise this AM). Have pretty much regained my continence and bladder function is getting better all the time except for over night.  Weird thing is, some nights I can get up and pee with no problem...strong stream.  Other nights it dribbles.  Still getting that burning pain in the middle of the night too.  I think it could be due to the weak stream or the drugs I'm on.  I take Klonopin for anxiety and Remeron for depression. A listed side effect of Klonopin is painful or difficult urination.  I take it at night, so that could be causing some problems although I've been on it for about 7 months, and this consistent (every night) burning pain only started after I cathed 2 or 3 times a day for about a week or a little longer.  Haven't cathed in 16 days, except for the specimen I gave at the nurse's visit on Tuesday and that didn't hurt at all.  When I got home and peed it didn't even sting.  I'm scheduled to see the surgeon on 12/12 but may try to see him before if the pain doesn't subside.  Could just be a normal part of the healing process.  Except for the pain everything seems to be slowly getting back to normal.......Fred

[Old Man]

Fred:

OK, I might add that any form of pain killer or antidepressant med can and will cause side effects. Difficult urination is one of the most frequent one listed. Had that problem myself after my radical prostatectomy.

I had some burning sensation problems after using a catheter too, so I know the position you find yourself in about this. Seems like you are on the right track with getting relief from the problem.

You might want to change the time of day you are taking the meds that cause the night urination problem to see if that helps with the problem.

Thanks for the update.

Old Man