I have had this bitch of a disease for over 16 years. I will turn ONLY 62 in January. I had a total hip replacement in late October. I was catheterized. It was removed too soon. At 3:00 a.m. the following morning I was catheterized, my bladder drained and the catheter removed. Since then, I have been leaking urine. I wear Depends all the time. A CT scan showed nothing.
Today I had a cystoscopy. It showed I had a scarred urethra (from radiation 16 years ago) and a completely full bladder. I was leaking all the time because my bladder was full. I was told I have to self-catheter 4-6 times a day probably for the rest of my life. I was reading others replies on Erleada - not realizing I am suffering from most of those side effects too. I am done, I can’t do this anymore. I am gay. I am single. At this stage, who would want me? Sorry for the rambling. If anyone else who has to self-catheterize and can offer some positive words, I would REALLY appreciate it. Thanks.
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MJCA
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My heart goes out to you, MJCA! My husband (78 yo) has been struggling with this "radiation cystitis/urethretitis" for two years, two bouts of it. You are so much younger -- have you talked to uro about an artificial urinary sphincter? We haven't because concerned about my hubs's age to withstand surgery. But you are young & maybe AUS or some other device could help solve this dreadful condition. Very best wishes!
Its a rough road brother, never give up. there are procedures you can do to give you a better quality of life. keep hopeful. 16 years is enviable survival time. Merry Christmas.
I am a fully active 80 years young man working 10 to 12 hours a day 5 days a week and cycling a sum total of 60 kms over the weekend. Some two months ago a few days into radiation treatment to my prostate and a single lymph node I had to interrupt the treatment due to urine retention leakage etc. and had to rush to a hospital to have a foley catheter inserted which drained 1.5 litres of urine . After a few days the catheter was removed in order to continue with the radiation treatment and I was instructed on how to self-catherize and given quite a few free samples of different types to find which was the most comfortable to use including detailed brochures and contact numbers from each manufacturer. I quickly found the one I preferred and received a prescription from my family doctor for 4X30 units and in the interim phoned the local importer who agreed to messenger me a weeks supply until the prescription order could be supplied by my health fund pharmacy. I have since upped my prescription to 5X30 units per month.
I can assure you that with a bit of practice there is nothing to self-cathing as long as you follow the cleanliness routine of washing your hands and using alco-gel wipes on the head of your penis before and after. The whole process takes me between two to three minutes flat. The one I chose is called speedicath by a company called coloplast which has slight upbent point
In short, its a breeze and nothing to worry about. All you need is a positive outlook and of course to workout as much as you can !,
Bravo for you. I'm an 80 year old man who ran 6 miles every day for 35 years and went to a gym practically every day for 50 years. A year ago I was doing 100 push ups at a time and stepping up and down on a kitchen chair 100 times. I can't do that anymore and between the Lupron and chemotherapy I have very little drive. My testosterone level is at 1. It's supposed to be between 20 and 40. The treatments drain me and I spend way too much time in my recliner.
Sometimes you gotta do what you gotta do…. After a bout of BPH (which seemed to be MPH), the choice was in dwelling Foley or self catheterization. I choose the later and learned as Tommyemily did. Every 8 hours like clockwork I voided. I watched my fluids in and out. This went on for a few weeks until my greenlight laser (G4x5 biopsies during the procedure really changed my life). Urologists after that seemed impressed that I could catherize myself. Hope this helps…
Hey there MJCA, I've been self cathing for 3 years. At first it seems absurd! by now it is second nature. You do need to plan ahead if you travel, have ways to keep clean in a public bathroom. Other than that, it is not a big deal at all. It sure beats having a full badder and trying to piss 20 times a day. I had almost 2 liters when I first had a Foley. The Foley was miserable.
I had the male urethral sling surgery in Sept 2021. I would do the surgery again - I went from leaking 17 ounces down to a quarter of an ounce which is on par with the artificial urinary sphincter (AUS). (I had LARP / RP no radiation)
My results were unusual in that I have bladder retention that is getting better. I have gone from self-catheterization 4 times a day to once a day. I found that I like the red rubber catheters the best. I am using size 14 French. My insurance paid for my first batch of catheters. I found ordering the clean items (gloves, wipes, 3g lube) from Amazon worked better for me.
It seems to be about have enough products out without having too much. I pull out about 10 catheters at a time.
I also have radiation damage to my bladder neck and go through bouts of urinary retention. Currently I can get by without self cath but I almost prefer when I was catheterizing. I did not need to pee 12 times a day, 3 caths and there was nothing else to worry about. Everybody is different in terms or things like when the feeling of urgency overcomes you .
Anyway self catheterization is no big deal if you find the right catheter for you and this can be a major process but worth it.
The only real problem is trying to find accessories to go with you now close friend the catheter. Stuff them up your sleeve, down your pants, bring back the quiver?
I understand your dilemma....But it is not the end of the world.... hang in there and see a good urologist who can suggest alternative methods to control your incontinence . Let us know your location and maybe someone here can suggest a good urologist to see in your area.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 12/25/2021 9:16 PM EST - Happy Christ's Birthday.
You got a lot of positive answers about self-cath. It is easy. As to the second question: I am gay, who would want me? That is your fear and depression talking. You are more than your cock. Too many of us gay men tie our identity and worth on dick-size/erections/ producing semen. Sad and absurd. Especially when PCa hits. You are more than your cock. If sounding can be part of sex play, why not catheters?
Never did sounding, nor would I have wanted. Please keep in mind I was diagnosed at 16 years ago at age 45. I am lonely. I miss a good hard on. I miss shooting a load 😉
My best friend, who teaches at a university, has been self catheterizing for years. Three time a day and he has no problem with it. He leads a full life. After I had "green light" surgery I had a catheter strapped to my leg for 66 days. When it finally came off I was, and am, fine.
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