Anyone else experience this?

6 years 3 months ago #48118 by Cackalacky
Anyone else experience this? was created by Cackalacky
I was diagnosed 1/13 at age 44 with high grade t1. Consider myself healthy, active, non-smoker, no chemical exposure, exercised regularly, and ate healthy for the most part and not overweight. Looking back about 2 years prior to diagnosis, noticed myself losing energy, gaining weight and had no stamina. Would try to workout mornings, but just felt too tired. Never took a nap in my life, but during afternoons I could hardly stay awake! Had infrequent blood in urine, but passed it off to over exercise or fatigue. Had flank pain so went to kidney doc thinking it might be a stone. After tests, x-rays, MRI, and no stones, ended up at urologist. Urologist did some checks and tests and decided that it was a case of prostasis. At that time he wanted to do a Cysto but I declined. Hind site, I should have, but at the time I didn't see a need for such an invasive procedure. Left, got some meds, blood cleared up-ish and things were looking better. About 8 months later starting feeling worse and blood was more frequent. Put going back to urologist off as long as I could until pain, blood, and urge to p was unbearable. Made an appointment thinking I was going back in for more meds to clear up an infection, but when I gave them my urine sample, the doc took me in right away for cysto. So, I did the cysto... As soon as he went in he said; "you have cancer". Next day I was in surgery. Fortunately I hadn't waited too long and cancer was close to, but hadn't gone to muscle. Have been doing BCG treatments and so far no recurrence. Next month go for 2 yr cysto. Before and post surgery have noticed more frequent and more sudden urge to p. Seems like it's increased in the past couple months, but I may just be paranoid. Normally up 2-3 times at night no matter how much I drink or when I stop drinking before bed. Daytime really no different. Work my day schedule around bathroom breaks. Anyone else experience this pre/post surgery? Recurrence?

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6 years 3 months ago #48127 by GKLINE
Replied by GKLINE on topic Anyone else experience this?
Sorry to welcome you here.
Your complaint is super common. It seems as if anytime you do anything with your bladder(even a cysto)it upsets the apple cart and you "just have to go"
Now I am not a Dr but I think in layman's terms that it causes the sphincter to go crazy. Mine has been going crazy for the last 6 years.
i don't mean to make fun, but yours is a common complaint that we all seem to have. I know it is a very real issue and I have talked to the Dr about it a number of times and he says I have to do keegles and keep a schedule.

I know this doesn't help much, but it is nice to know that you are not alone.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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6 years 3 months ago #48164 by MonaSingh
Replied by MonaSingh on topic Anyone else experience this?
Sorry but i don't suffer with this problem in my life but i heard this thing from many of the people

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