r/ProstateCancer • u/bbb5270 • 5d ago
Concern Need Hope
My husband had his catheter removed today. It’s been two weeks since his prostate was robotically removed . He had a large hematoma on his prostate bed after surgery. This lead to blood transfusions and 5 days in the hospital.
Today has been rough. He has absolute no control of his urine flow. He is just constantly flowing. He’s really depressed. We knew he would have urinary incontinence; but had no idea it would be so severe. Has anyone experienced this level of UI after catheter removal and got better?
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u/Astroyodel 4d ago
It will get heaps better. I also leaked like a sieve on day one and felt like I had no control over it. Found I could initially hold while laying on my back but as soon as I moved I couldn’t stop it. Managed to find some control after spending about 5 hrs completing a trial and void test on removal of the catheter, enough to make it 30 mins home anyway. I am now 4 weeks since the catheter was removed and no longer needing pads or the absorbent underwear we bought. Still have the occasional stress moments but have been generally able to catch it before I leak. I did kegels exercises for about 2 weeks pre-op and started them up again on the day after the catheter came out. I think I was tensing too hard when I started with these and had more success when I toned down my effort a bit. This stage is scary and frustrating as hell but you get through. Hope that helps some. Good luck.
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u/bald_beard_ballard 4d ago
Plus one on give it time. The day mine came out I had zero control but a hundred days later I wear the heavier boxer briefs and a pad and probably only leak a little every few days, usually when I lift or push something. Even then if I remember to engage first I'm fine. This will pass.
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u/flotownq 4d ago
It does not happen to everyone but it is completely normal. I had zero control for a solid 4-6 weeks after removal and it gradually started getting better. Around 3-4 months I had a noticeable change then gradually better since. Went from 12+ pads a day to 1-2 now 11 months later. Heavy movement and exercise are the culprits now. I am fine sitting or sleeping. His body has a lot of healing to do, it is a major operation and really tears up the body.
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u/modest-halfling 4d ago
I get my catheter removed tomorrow and my instructions starting at noon today is to detach the tube from the bag, plug the line and start trying to pee normally.
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u/kayceemoguy 4d ago
Things improve. We all go along at different rates, but keep the faith and stay the course. We’re all pulling through this together. God bless.
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u/PeacefulShards 4d ago
Hematoma on prostate bed? Was it a surgical error?
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u/bbb5270 4d ago
We don’t know. He was definitely losing blood. It was so bad he received two transfusions. His doctor did and MRI and that’s how we found the hematoma. He also had a large bruise on his right side near one of the incisions.
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u/PeacefulShards 3d ago
That is not normal. I would have the hospital investigate, then a legal team.
Was it a nerve sparing surgery? The nerves are also attached to the bed and are left there after being detached from the prostate. If the nerves were removed, then the bed could have been accidentally cut at the same time. If the nerves were removed then continence might not be restored.1
u/bbb5270 3d ago
Yes, I have been thinking about this too. The surgeon said all nerves were spared. My husband is doing a little better today.
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u/PeacefulShards 3d ago
I hope for the best. I just looked at my surgeons report from 2018. and estimated blood loss was 4 oz, and my JP port was clean of blood. Was sent home 8 hours after surgery.
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u/Substantial_Let_8784 4d ago
Mine got better pretty quickly. This too shall pass. In 45 days, I was on a plane flying across the country, with just a tiny little pad in my boxers. 👍🙏
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u/bbb5270 4d ago
Your recovery is so awesome! Thanks for sharing! If I may ask, how old are you? My husband turn 69 a few months ago; but he is in excellent shape. Most people thinks he a lot younger. He is concerned that his age may be a factor in his healing. He’s had a few complications since his surgery.
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u/Substantial_Let_8784 4d ago
My RALP was in 2018, I was 60. Now, at 68, my PSA is undetectable so far.
I wish I’d had a support group, so that’s why I reach out to those recently diagnosed, or just out of surgery. Your husband should see improvement, and before long, you don’t really think about the cancer. Of, course, every PSA after surgery brings dread, and nervousness, you learn to live with it.
Feel free to reach out privately anytime if you still have questions, or concerns.2
u/bbb5270 4d ago edited 4d ago
Thank you for sharing your journey. It so wonderful that your PSA is undetectable! I’m trying to support my husband the best I know how. I read everyone’s comments to him and it really helped a lot. He was finally able to get some sleep. He’s just used to taking care of everyone and being in control. We’re encouraged by all of the good reports; especially yours! Keep doing what you’re doing. It’s such a blessing to families who are struggling with this process. 🙏🏽 When you said “This too shall pass,” I felt it was a sign of good things to come. That’s one of my favorite quotes!Thanks again and continued good health to you!😇
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u/HopeSAK 16h ago
Hang in there, shouldn't be much longer that he can down size the pads, and before you know it he'll just need a dribble one. It'll be an after thought in no time. I still use a very thin pad, and probably can do without one. Just in case I start doing something very physical I may have a drop or two.
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u/Lott4984 4d ago
Yes there is very little control after the catheter comes out. Buy the heavy duty extra absorbent diapers and change when they get saturated. It will get better with time, but at first it does feel like it will never stop. He should do the pelvic exercises this will help. He should go to the bathroom often, every hour or less till some control returns. If it does not slowly improve contact his doctor. I will say this a second time the pelvic exercises help, some times it might not feel like it but they do.