Huge urges to urinate, leak at tip of penis alongside my catheter, pains ease in couple of minutes.

Edited , 8 users are following.

On 1st Jan this year awoke with blocked bladder at 3 am. I couldn't talk properly and couldn't get out of bed, very shaky on my feet. Got to walk in health centre with my wife and waited to be seen. Eventually, a doctor examined me and immediately called a nurse for a catheter. He emptied 1.3 Lt of urine with the catheter. Obviously, I felt much better.

He took my details and told me the Urology department would contact me in 2 days time. Nothing from them so went to hospital and ended up in A&E because now I was feeling quite ill. A young woman came to see me and told me she is a junior urologist and she will change the catheter, which she did very painfully.

She assured me a letter would arrive with details of an appointment in a couple of days time. No letter.

The shaky legs and slurred speech returned so my wife took me back to A&E, where they suspected I had sepsis. My wife had to leave me in a hospital bed, where I stayed for 5 days and 3 more catheter changes.

The nurses looked after me really well as I was pumped with antibiotics and put on oxygen.

The last catheter that was inserted is a 3 way catheter and the pain was incredible. The doctor told me the catheter had to be changed again for a 2 way catheter and I could leave the hospital and return on 12th March (this week) for a cystoscopy. I told the doctor my urethra feels badly damaged and I refused to have it changed.

Things were good until yesterday; I started to have urges to pee, which eventually became so strong it made me poop and dribbles of blood escapes from the side of the catheter at the end of my penis. - there is no blood in the catheter bag.

These urges are still coming every hour, but I am all out of poop so I am having dry spasms with just a bit of blood to show for the effort. I think I can make it till Thursday when I get the cystoscopy but the lack of sleep is not good for me.

I will be 80 years old this year.

I'm sorry if this seems like something from the Keystone Cops.

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  • Edited

    In a way, I understand what you have gone through. I made 10 Emergency Room (ER) visits within 14 days with my "adventure". However, nothing that I went through compares at all to what was happening to you. Sometimes, we look at our medical team and the term "Keystone Cops", comes to mind. Hopefully, though, you are still alive at the end to tell your tale. In my case, it was a matter of not even getting a cystoscopy for over a month and a half. Do, you remember what sizes your catheters were? I was OK with two-channel and three-channel Foley catheters but, as for pain, I still remember what I went through when a nurse tried to insert a size 24 Foley (3-channel) and I could not maintain consciousness for her to inflate the balloon. Eventually, a urologist came by and replaced it with a size 20. My father died from sepsis (as a result of cancer issues), so I am really glad that you are still with us. I also had urges to pee but it never came down to "pooping" (I had a bit of constipation along with my issues), but, with a catheter in place, I spent a lot of time in the bathroom pounding my fist on the wall or having urine spray out in every direction around the outside of the catheter. Any bleeding I did was into the leg or night bag so that meant it came from inside my bladder. Hope you stay with us.

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    • Posted

      Thanks Howie,

      I am new to catheters and don't know anything about sizes, but I do know the current 3 channel is the largest I've had.

      I'm trying to get by until Thursday this week when I go for a cystoscopy (just 2 more very uncomfortable nights).

      I had a cystoscopy 2 years ago and I know it was the worst painful experience ever so I'm a bit nervous about it, but what the hell - let's get it done.

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    • Posted

      Cystoscopies CAN be painful. The ones where it is just the camera aren't too bad but when they start adding the Ginsu Knife Attachments, that is something else. If you experienced having a Foley catheter installed, a modern Cystoscopy (with the latest in uro equipment) isn't much worse. A matter of adjusting your breathing and applying the same pressure as trying to pee also makes it go quicker. In terms of pain, it usually is a lot of pain but over a very short time. As for the Catheters, the sizes are everything. The three channel are not that much more painful than the two channel. But, trying to stuff a size 24 catheter into a size 20 penis,.... well, you get the idea. At the end of my TURP surgery, they inserted a special size 22 three-channel in after the surgery, but I was unconscious with general anesthesia at the time so I was able to handle it for 5 days. On the other hand a nurse trying to remove a size 20 catheter that became "stuck" (think "pull", "push", "pull" again... call a helper nurse, repeat... call a doctor...) caused me more pain than any cystoscopy. I just had a cystoscopy yesterday but it wasn't just the camera. The urologist was going to "knock off" some scabs and trim scar tissue. He just kept saying: "Tell me when to stop..." and he stopped after I had a few full body convulsions.

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  • Edited

    I'm sorry to hear what you are passing through , I had the same problems with bladder spasms , they are very painful and as you said when you feel the pain blood comes from the sides of the catheter and not from the urine itself , I was given Detrol 4 mg and it dis help a little but did caused constipation , my problem did finish when the catheter was changed to 14 gage , I hope you can find the way to get rid of the bladder spasms as they are very painful .

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    • Posted

      Thanks Kissimmee,

      the spasms are not as frequent during the day and seem not to be as painful as at night, but last night I vigorously massaged the perineum area during the spasm and it really helped reduce the pain.

      I've had BPH for 20 years now and this is my 1st experience with catheters... and I hope the last.

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    • Posted

      I also found that when the catheter is too loose it goes inside and the tip is above the urine line and the bladder can not empty completely , the catheter should be pulled outside so the balloon inside is resting in the floor of the bladder so the open tip can be enough low to let the urine flow outside , the first time I went to the emergency the foley catheter was well secured in the leg and stretched and I did not have spasms , the others could run back and forth and started to have spasms .

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  • Edited

    Chris,

    Really brutal experience - very sorry to hear about this. I also went into total retention at about 7pm one evening following a second HD Brachytherapy treatment for prostate cancer. The radiation caused prostate swelling and total retention. I didn't even understand what was going on but the pain got worse and worse and my wife drove me to the emergency room, where a nurse gave me an IV with pain meds and then inserted a catheter and drained off 1300cc of urine, the same as your report. All the pain went away. I was sent home with a Foley catheter and had six of them put in and taken out over a period of five weeks until I could void on my own. The nurses who do this aren't particularly gentle but should be aware of the pain level involved. Inserting a catheter can be a lot more painful then removing one, especially if the urethral lining isn't used to it. Can't you find a doctor who can do this more gently without all the pain? A catheter can cause some bleeding, as it does irritate the tissue involved.

    Tom

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    • Posted

      Hi Tom,

      thanks for the response. My urethral lining has taken a battering over the past 10 weeks and the cystoscopy is being performed by the consultant urologist at Kettering General Hospital UK.

      His name is Mr. Payne; not a great sounding name for a doctor but he is the consultant urologist so hopefully the experience will be unlike my previous cystoscopy, which was horrendous.

      I hope to report back later this week after the treatment.

      Best,

      Chris.

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    • Posted

      Part of how "painful" a cystoscopy will be is half the skill of the urologist and half the type of equipment. I had a cystoscopy back in the 1980s and they used steel rods. Today, it's just a thin fiber optic unless there will be more than just the camera.

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    • Posted

      Hi Alan,

      that's right about 'Mr' but my remark was about his name; Mr. Payne (pain) is not a great sounding name for a doctor.

      I hope you are loving it over there.

      Best,

      Chris.

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  • Posted

    Hi, Chris,

    Sorry to hear of your bad experiences with catheters. Four years ago I had a Foley inserted for the first time, and it was the most pain I had ever experienced. Later I changed urologists, and the nurses at the new uro's office were amazing. They could install and remove Foley catheters without causing pain! I had a series of Foley's in for 2 months because I was afraid that I couldn't stand the pain of clean intermittent catheterization (CIC), and during that time I experienced many bladder spasms. My doctor prescribed Oxybutynin for the spasms, which seemed to help. However, the medication made my vision blurry so I stopped taking it. You might be okay with it, though. Also, did the nurses give you a catheter leg stabilizer? It's a small device that attaches to your leg and helps keep the catheter tube from pulling and irritating the end of your penis. And they should've recommended putting some sterile lubricant on the tube--do a quick google search on how to do that. Hope your cystoscopy goes well.

    Stebrunner

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    • Posted

      The leg stabilizers are interesting. I found that there are two kinds. "Cheap" and "Good"! The cheap butterfly ones are just paper and, once they get wet, they don't stay on much. They are the ones with just a Velcro strap to hold the tubing. But I also had the other kind that has a plastic device riveted to the backing and it's designed to hold the channel tubing at the "Y" intersection securely and it snaps shut with a "button" to open it. They stay on longer.

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    • Posted

      Hi, Howie,

      Good point about the types of leg stabilizers. I always had the better ones made of plastic, and they worked pretty well. Though I had to show one urology nurse how to use one!!

      BTW, there's a new catheter being designed in the UK to replace Foley catheters. It's called the Flume catheter. Don't know if they are available for sale yet, but the new design will help reduce infections and increase comfort.

      Stebrunner

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    • Posted

      Many thanks, Stebrunner,

      I can tell you now there are no more spasms. I can also tell you about my stupid mistake. Night before last I drank 2 ltrs of water thinking it would help. WRONG. My wife drove me to A&E where they changed the catheter and emptied 2 ltrs of urine, gave me antibiotics and told me I was lucky not to affect my kidneys. They did a kidney blood test and they're alright.

      They were baffled because my leg bag was over half full and still had 2 ltrs in my bladder; so the catheter wasn't operating as it should. My wife drove me home at 6 am and slept for the best part of the day.

      Anyway, this morning I had the cystoscopy and the doctor injected a lot of the numbing agent, which helped with the pain. The monitor was right next to the bed and I could see the camera's journey to my bladder. They then filled my bladder with water and pointed out the red area on the bladder wall and told me that is a rather bad infection.

      The doctor then asked me if I would have a turp because if not I will have the catheter for the rest of my life. He then fitted a 16 - catheter and told me to expect a letter in a week or so to have the catheter taken out and they would see if I can pee. If not, I would be offered the surgery or wear a catheter forever. I thanked him and his team and left with the word 'turp' ringing in my ears, so now I am investigating everything to do with turp.

      Best,

      Chris.

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    • Posted

      That is really a moving experience, Chris. I had several Foley catheters in me over a three-month period. They are NOT what I call fun especially if I started off having bladder spasms even before starting with catheters. Because of the constant spasms, with bladder full, empty or in-between, I chose not to temporarily use CIC. That is, catheters you insert in order to pee and then remove. There was a mention that, if I stayed on a Foley too long, it could turn into a life-long thing. I'm glad that I'm passed that as the number of UTI (infections) were depleting the world-wide supply of Cipro 500's. Since I had full blockage, I went with the TURP. Not every urologist has access to every type of equipment nor has the skill set to do every type of procedure and you'd want to make sure that the urologist doing a procedure on you has done an awful large number of them.

      Hopefully, you will pass a void test and be able to urinate without a catheter. However, TURP isn't the worst thing in the world but it does have a LONG recovery time. Online, people say 6-8 weeks for the bleeding to stop. My urology department said 2-3 months. Complete healing? I'm hearing maybe a year. But... I can pee on my own. Had a "Ginsu" cystoscopy to clean up blood clots and scar tissue but the pain-to-benefit ratio was too high. The urologist stopped when my entire body started "convulsing". The rest? He just said it will take time. Being able to empty my bladder in 3-5 seconds is new and a bit disturbing and the "fluid hammer" effect when the flow stops has ended now when I passed a huge clot just a few days BEFORE the cleanup cystoscopy. So, the only thing left is the burning sensation while peeing (not due to infection) and that comes and goes.

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    • Posted

      Hey, Chris,

      Glad to hear that the spams stopped. Your journey has similarities to mine. Four years ago, I was in hospital where they drained 7,000 ml out of my bladder. That's right: 7,000 ml. Didn't realize I had urinary retention because I was still able to pee. My stream was pretty much normal except for being a bit slower. After I left the hospital, I couldn't pee a drop--hence my long experience with Foley catheters. The six urologists I've seen since, with the exception of one, all told me that I'd be on catheters for the rest of my life--but then they'd tell me I had a small chance of peeing on my own if I went with one of their surgeries, which included supra pubic prostatectomy, HoLEP and TURP. I decided to learn how to do clean intermittent catheterization (CIC) which allowed me to thoroughly research which treatment would work best. I ended up going with prostate artery embolization (PAE) which was partially successful, as it allowed me to pee some on my own. I still have to CIC 5 or 6 times a day, but CIC isn't bad once you learn how. (There are a couple of great threads on this forum on self catheterization that helped me.) I'm now at a point where I need to have a procedure done because I'm not able to fully empty my bladder due to my prostate pushing into the bladder's base. Not being able to completely empty is causing bladder stones to form. Anyway, I'm choosing to go with focused laser ablation (FLA) and have that scheduled for the end of April. I'll be posting how it goes afterward. To make my decision, I found it important to know the size of my prostate, to know if it has a large median lobe, and to know what my bladder function is (this is done via a urodynamic test). My urologists would only tell me vaguely that my prostate was large. It wasn't until I saw an interventional radiologist that I knew it's actual size, it's now about 120 cc. That's important because some treatments will likely have poor outcomes if your prostate is too large or too small, or if you have a large median lobe. Bladder function is important because a TURP, for example, may clean out the pipe, but that won't do much good if there's a problem with the pump (your bladder). Anyway keep researching--you'll figure out which treatment is best for you.

      Stebrunner

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    • Posted

      Thanks stebrunner and howie,

      I've just been on the phone to my uro's secretary and she told me to expect a letter next week to go for my void check.

      She also told me I can have green light surgery instead of turp, but also said I would be referred to Addenbrookes hospital in Cambridge if I wanted holep.

      So now I must study these options, especially as Tef 'Aho is the senior urologist at Addenbrookes and they have done over a thousand holep procedures.

      Thank you all for your support.

      Best,

      Chris.

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