bladder sphincter not working

[USAPRDA]

65 Gy radiotherapy, 5FU & Metamycin for stage 3 anal ca treated at MDAnderson in 2013. Last year, especially, lost feeling in all toes on both feet and bladder sphincter. US General MDs ignorant of PRD and pudental/ perineal peripheral nerve damage due to radiation . Anyone else experience urinary retention requiring manual pressure on bladder to start flow, flaccid bladder, no muscle tone, ten trips during days with maybe 8 oz dribbling. No conscious sphincter control on standing when gravity results in incontinence. I cannot find a specialist in US to treat or even diagnose what is really happening. Cannot share my bed, cannot go hiking or much of anything else that I used to do outside. No QOL..... any suggestions welcome. Thanks in advance.

[Jimbo65]

I've just quickly read your post as I sit here having had a catheter fitted 2 wks ago due to bladder not emptying properly. I had similar issues that you described. Nightly trips to the loo breaking sleep pattern, feeling exhausted. This has given me back control of my waterworks for now. I have a flipflow valve I can control emptying it myself. This is permanent for 3mths or until I go to urology and they can determine what's going on. It maybe radiation damage to the area which in my case is highly likely. What is frustrating is that PRD isn't widely understood so I've spent yrs trying to get pelvic floor muscles to work. Taking urine tablets, spending a fortune on pads etc. All of which do help but don't deal with the problem. As clearly there are other factors that are only now being acknowledged. I strongly suggest you ask about getting a catheter fitted. I really hope you can so at least you're in control while your medical team work out how to treat things. Hang in there. Xx

[Hopeful-one]

Hello. I read your post with interest- and empathy- as I have started to get some numbness in one toe over the last few months. Also foot pain with no obvious cause. Also I have problems with waterworks- not emptying properly, having to strain to get urine out, coming out in dribs and drabs. Seen a urologist who acknowledges it's radiotherapy related - chemoradio 14 years ago for ca rectum. I've also just been diagnosed with an autoimmune related skin condition in whole genital area, probably triggered by trauma of radiotherapy, which is causing additional difficulties. I'm going to have a urethral dilatation, for second time, but 3 month wait. Urologist is talking about needing to do self- catheterization to keep whole thing working. Not sure how feasible that will be given the state of the skin....I hope you get some appropriate help which allows you to get out and about. I just wear the pads and get out up the mountains, it does wonders for my general well-being.😀. Good luck.

[eyupmeduck in reply to Hopeful-one]

I was interested to read about your numbness in toes. I did not assiciate this with cancer treatment, but to ageing - I am 77 and have had hormone and radiotherapy treatment for stage 3 prostate cancer, now in remission. The toe numbness is something I think I have had for some considerable time, probably not assiciated with cancer treatment but it has set me thinking ! I do hope you find the right treatment for your condition.

[Renee1964]

Hello , just read your post , urinary problems very slow take out , having to up to 15 min. for it to come out. Sphinchter control has gone specially when you walk. According to my onc. it is due to radiation burns to colon and intestines , no way to fix that unless a cholost. Bag which up to the moment have refused. How I do it , Loperamide 2/2/2 and if I have to up the morning ones which is the worst time another 2. Some days you will have accidents despite the pills but most of the times it works.i don't go out much because of this but I noticed it's like a cycle bad,worse,better.Adult pant nappies with wipes . Have and still use them all the time, they are not that awful and at least you know you're covered if anything happens. With a simple scan and a colonoscopy the drs will see the fibrous growth from radiation, the "frozen pelvis" everything is distorted and a mass.

Good luck !!