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DiscussionNight/Early-morning "anxiety" caused by need to urinate
Prostate Cancer | Last Active: 1 day ago | Replies (32)Comment receiving replies
Replies to "@jeffmarc Do you have any side effects I read that some develop urinary infections because of..."
@jrs619
I never had a urinary infection.
At most I go through two pads a day, And that is not very often. The biggest problem is, I can’t trust what will happen if I go somewhere. I leak slowly and constantly if I am standing up, Even if I just go pee and empty my bladder, I still drip. This started about five years after I had radiation and has gotten progressively worse in the seven years following. I’m actually going to see a doctor about getting an AUS. If I’m too active and lean over to one side or the other, I end up peeing down my leg.
I do use a Werner clamp if I go somewhere, But I can’t keep it on for more than two hours or it can cause problems. If I were to go to a four or five hour event where I have to be standing up, I might have to change my pad and my underwear because the edges get wet. This really limits my ability to go places.
I can’t wear incontinence underwear because if my urine gets beyond The center of my groin it will cause itching and redness. I’ve got some stuff I put on to stop the itching, but I have learned not to do that. I was reading in my baby book that my parents had that problem with me when I was an infant, I guess you never grow out of that problem.
@jrs619 Thanks for your message. About 2-3 months ago, I shared a revelation that solved, at that time, 75% of my incontinence and the number of pads I was going through: My RP surgery was in mid-April, and my catheter was removed 11-days later at the end of April. About a week after that I felt the energy to start driving and doing quick errands. I wear traditional, slightly loose-leg boxer shorts, not jockey and not tight-to-thigh athletic/compression undershorts. So, I had to wear a "diaper", since a pad would fall out of my boxers. But...going out in a diaper those early weeks and first two months, I decided to be "smart" (not really), and put a disposable "pad" "inside my diaper" so if/when I leaked, I could quickly find a bathroom, and pull out the soaked pad, and replace it with a clean/fresh pad that I carried folded in my pocket.
What I didn't realize until two months later, is that the extra bulk of that pad needed space to be down there. It made its own space by pushing up on my perineum, thus pushing and applying pressure on my bladder, which forced it to leak a bunch of urine. So, my "not so smart" means of using a pad to help "quick change" it when it was wet, had created the very problem that I was having...I was creating my own problem and frustration. I didn't realize this, because as I recall, I ran out of pads one day and had to wear just the diaper. That was an epiphany moment: after about 2.5 -3 months post-RP surgery, the day I had to wear "just a diaper", I had minimal...almost no leaks. I wore two diapers all day. The amount of total leakage was minimal...like the size of a quarter or half-dollar. The days and weeks before I was absolutely soaking "pads" inside my diaper because that pad was pushing up on my bladder, forcing urine out through my still weakened bladder/urethra sphincter.
Life has been great now. I went to bed with a diaper...from "Day #1" without a catheter, but I never leaked urine while reclined, sleeping through the night. I now only sleep in my loose-fit boxers, and wake up in the morning about 5:00 a.m. to urinate. After that I still wear only my underwear that I slept in, through the early morning hours until I shave and shower - no leaks as I move about the kitchen for breakfast and sit to eat. Then I put on a diaper after showering "just because", and that diaper lasts me from say, 8:00 or 9:00 a.m. until about 2:00 p.m. at earliest, but usually until about 3:00 or 4:00 p.m., most often when I have returned from errands or afternoon activities and note a little moisture "down there." That "second" diaper lasts me until I go to bed.
Two pieces of advice: 1) If you are not going to Pelvic Floor Physical Therapy (PFPT), get your urologist to write the prescription for 8 sessions (usually plenty). There are MANY more Kegel exercises than the handful likely given to you on your little "post-op" instruction sheet. PFPT really helped me. I did 7 sessions and really didn't need the 8th...or the 6th or 7th. And secondly, part of PFPT is to get on a disciplined schedule of how and what and when you consume liquids. I was told to use the restroom every two hours whether I felt like I needed to urinate or not. And...immediately before or after - or whenever - I was only to drink 8 ounces of "water". No alcohol, no caffeine, and no acidic drinks because they are all bladder irritants, especially post-RP surgery when, as my PFPT Therapist said: "Your bladder is really pissed off (pun intended) after surgery." Your bladder is in recovery from the assault of the surgical removal of your prostate that used to sit right under and support it. Your bladder is now weaker or less-able to hold the weight of urine that used to be supported in part by the prostate under it. BTW...I could not drink only water. My PFPT Therapist allowed me to drink small amounts of my favorite "decaf" sodas, and a few sips of orange juice in the morning. I can really tell when I have consumed more than my 8 ounces of liquid. Those are times when I might leak more and/or have greater urgency at unexpected times. PFPT not only retrains/strengthens your pelvic floor muscles, but it also retrains you about when and how much you drink. I have cut my soda and orange juice consumption by 1/2 to 3/4 of what it used to be. I didn't think I'd survive that, but I did.
So, bottom line: I have now regained 95-99% continence. "If" you are using a "pad" inside a "diaper" because you think it was "smart" like I did, once I started going out on errands and living life: I suggest stopping. Trust the diaper to do the job of containing urine, and carry a spare diaper folded in your pants or coat pocket, or in a small manly sling bag across/over your shoulder. And again, if you are not going to PFPT, "tell" (don't ask) your urologist that you want a prescription for 8 sessions of PFPT. Depending on your health plan you may need pre-authorization. My Medicare Advantage Plan only approved "two" sessions, but my Therapist simply wrote a justification for a total of 8 sessions, and it was quickly/easily approved. Good Luck to you.