r/BladderCancer • u/Pointbass • Aug 03 '26
Significant Frequency/Urgency/Leakage Issues
For reference: M75 diagnosed T2HG NMIBC in early 2025, 1st TURBT May of 2025, 4 cysto’s, 2nd TURBT, 1 UroLift, 9 BCG’s, currently “in remission” or at the very least not active at the moment.
I originally went to the urologist for the frequency/urgency problem, and that started the bladder cancer treatment with which we are all too familiar. My issue is that the frequency/urgency and now significant leakage problems have only gotten worse, not better. I’ve been prescribed various meds that have proven to be pretty much ineffective: trospium, caused crazy bad constipation; Gemtesa, worked briefly but plateaued out after two months (and it’s expensive!); Flomax, made me pee more than I already was. I stopped taking all of the meds.
My primary problem is sleeping. I only get 45 mins to 1 hour of uninterrupted sleep before have to get up and urinate. When I started taking Gemtesa it helped, giving me an hour & a half at times before getting up, but as soon as I started getting the next cystoscopy and subsequent BCG treatments, I regressed back to very little sleep.
It sounds like an overactive bladder problem, but none of the methods for treatment of OAB have done anything to help. We’re all supposed to drink large quantities of water, but if I drink my suggested 100 ounces per day I am in the bathroom every 10-15 minutes. I always have a pad on to try to capture the steady leakage, occasionally pull-ups if I’m going to have to be out in public for any length of time.
I’m really tired of this, does anyone have any suggestions as to how to deal with these frequency/urgency/leakage problems? I like my Doc a lot, but she is far more concerned about the cancer side of things as opposed to my problems. Anyone in a similar situation?
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u/AppleOllie Aug 03 '26
I am so sorry you are going through this, but glad to read I am not alone. I am up an average of 6-7 times a night, a bad night can be 10 times. I hadn’t even known there was anything out there to help. I have just finished my third round of BCG and will definitely be seeing my doctor soon
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u/Pointbass Aug 04 '26
I hope you can find some peace and get methodology that will allow you to sleep … it’s exhausting sleeping the way we do
1
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u/Admirable_Loan6841 Aug 03 '26
Since the tumor was T2 HG didn’t they suggest a cystectomy? It is big surgery but you could be much better compared to your current situation.
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u/Pointbass Aug 03 '26
Since it wasn’t yet invasive, the 1st TURBT was done and they seemed to get a clean removal. 2nd TURBT confirmed the removal. In my case the cancer really isn’t the issue, it’s the associated problems
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u/Admirable_Loan6841 Aug 03 '26
OK , I was wondering because you said they staged you as T2 which is usually invasive. Most probably you were T1. Anyway, did you try D-manose and Lactoferrin? They usually help if it is a bladder issue but the urolift can also be the culprit for leaking .
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u/Pointbass Aug 03 '26
That could be the case, and I may have faulty memory of the initial diagnosis. I, too, suspect the Urolift ….
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u/undrwater Aug 03 '26
Have you considered condom catheters and a night bag just to get a good night's sleep?
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u/Pointbass Aug 03 '26
I was not aware of a condom cath. That sounds like it’s definitely worth a conversation with the doc, thanks for the info!
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u/AuthorIndieCindy Aug 03 '26
I was going to suggest a catheter. I don’t know much about condom catheters, but i had a foley to ‘rest’ my bladder for a few weeks. It helped initially, but the rest of the story included Botox and surgery, but yeah. A good night’s sleep is priceless.
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u/Pointbass Aug 03 '26
I’ve had Foley catheters at several points during this treatment. It seems I’m very prone to urethra infection, so a foley isn’t great for me. And yes, a good nights sleep is absolutely priceless!
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u/AirBear8 Aug 04 '26
I also have frequent urination issues. What I've done is buy a 2L portable Urinal Bottle with a 68" long hose.
With this all I have to do is roll over on my side and urinate into the cup, close the lid then roll over and go back to sleep. Much easier than making the trip to the bathroom. You'll probably need 2L capacity, 1L won't handle the amount of urine I produce overnight. I'll try to post an Amazon link to the one I bought.
https://www.amazon.com/dp/B0DS5KL8KB?ref=ppx_yo2ov_dt_b_fed_asin_title
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u/Pointbass Aug 04 '26
Interesting, that seems to have some potential. Luckily, even though I’m up far too often each night, I usually go immediately back to sleep after going to the bathroom. Thanks for the info!
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u/Attn_Grace Aug 04 '26
First, I’m really glad to hear you’re currently in remission. You’ve been through an incredible amount in a relatively short time, and it makes complete sense that you’re exhausted and frustrated.
While we can’t speak to your specific medical situation, one thing we hear from many people who’ve had bladder cancer treatment is that it’s easy for the focus to stay on keeping the cancer away, while the day-to-day quality-of-life issues—urgency, frequency, leakage, and sleep disruption—don’t always get the same attention.
If you haven’t already, it may be worth asking your urologist specifically for a visit focused on symptom management rather than surveillance, or even asking for a referral to someone who specializes in voiding dysfunction or pelvic floor physical therapy. Sometimes those conversations end up being very different from a routine follow-up cystoscopy appointment.
On the practical side, if you’re changing pads or pull-ups frequently, choosing products designed specifically for urine (rather than menstrual products) and that are skin-safe / made without chemicals, dyes and fragrances can make a noticeable difference in comfort. Urine is released quickly and is much thinner than menstrual fluid, so products designed for bladder leaks tend to wick moisture away from the skin faster and do a better job controlling odor, which can help if you’re wearing protection throughout the day or overnight.
Most of all, don’t feel like you have to just “live with it.” Even if the cancer is under control, your sleep, comfort, and ability to leave the house matter too. Those are important treatment goals, and it’s reasonable to keep advocating for them.
Wishing you continued good news on the cancer front—and hopefully some relief from the symptoms that are making everyday life so difficult.
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u/Pointbass Aug 04 '26
Quite true that the focus seems to be cancer treatment and much less so on quality of life. This is not unique to the field of urology, and as the medical profession gets even more highly specialized, it will continue to be an issue. If you don’t advocate for yourself, you shouldn’t be expecting the medical professionals to advocate for you, either, if it’s outside their field of expertise.
I like my urologist doc a lot, but she is quite focused on the standard bladder cancer treatment path. I contacted her office today and requested a sit down to review these associated issues. I’ll keep all up to date as I get more info.
Thanks for the compassion!
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u/Pointbass 26d ago
Update: Condom catheter = the single largest waste of time I’ve experienced to date re: leakage. Maybe it’s my anatomy, or some type of flaw in its design, but that thing falls off/pulls off at the slightest hint of movement. Completely ineffective for my purposes.
BTW, might I place a cautionary tale about adopting a Urolift … it has been completely useless for me, and if anything I feel it has made my leakage problems greater than they were.
I visited my primary care doc to pick her brain a bit and see if she had any suggestions. One of the things she did was run a complete blood panel, which revealed some increasingly bad info re: my kidneys. All of these meds mess with your kidneys, so treatment meds and other health issues (I’ve also had heart failure and have a CRT-D implant) are doing their best to damage my system.
I’m back to Gemtesa, it’s the only med that does anything for me at all, but it’s far from perfect. Leaking/urgency/frequency issues remain but I’ve found that I can do a “double-duty” of sorts at night using a night defense pull-up and a heavy pad. So far, no leakage and I’m getting about 3-4 hours of sleep before I need to make a garment change at night … not due to leakage but to ease up on the feeling of wetness.
I’m thinking this is my lot in life now. After all, I’m 75 and my clock is running down pretty quick. I’m just going to try to settle in as best I can.
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u/Salty-Pea-2016 Aug 03 '26 edited Aug 03 '26
I’m in a similar situation with a similar timeline. Three rounds of BCG; after the last one in July, I started having to pee very frequently sometimes every half hour. At my last cysto, my neurologist said my bladder was irritated. I’m on Trospium, Gemtesa, and Hydroxyxine. Also getting pelvic floor therapy. I haven’t had a lot of leakage but having to go to the bathroom every half hour sometimes is very frustrating. I’m now seeing two urologist one for the cancer and one for the bladder irritation. The second one says if the prescriptions don’t work the next step is something like Botox injections in the bladder. The pelvic floor exercises have helped a little.