Overactive bladder and irritation

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Hello, 

I am looking for some advice. My father was diagnosed with a grade 3 transitional cell carcinoma at the end of 2023. It had spread to the lymph nodes in the pelvis and chest, and there were nodules in his chest. 

He had a TURBT to remove the large tumour, 6 rounds of chemo (Cisplatin and Gemcitabine) and then 10 months of Avelumub immunotherapy. We had to stop this treatment last summer because of the side effects. However, on his last scan in January, there was no signs of cancer. Which is obviously great. 

He has had 3 TURBTs in total, the last being in November. Since February this year, he has been getting bladder irritation and has been needing to urinate a lot more than normal - especially at night. We saw his urologist and he sent him for an ultrasound and a flow test. Both came back ok. He has been prescribed mirabegron to help with the irritation. This didn't help, so he has now started Solifenacin. This doesn't seem to be helping either, though he only started these a few days ago.

He has had 3 UTI's since the start of the year. It is incredibly difficult to know when he has a UTI and when it is just irritation. It seems to be getting worse. He is currently getting up at least every hour at night to urinate. 

He has been taking D mannose and a probiotic supplement as I have read that these can help, I haven't noticed any improvement yet.

His urologist hasn't been overly helpful. He said if the Mirabegron didn't help, there wasn't much more he could do. He suggested he go on a prophylactic antibiotic but this can cause fibrosis on the lungs and my dad already has a lung condition, so his GP didn't think this was suitable. 

 I was just wondering if anyone else had been through the same and has any advice? He is unsurprisingly getting very down about it. He found having a catheter in place very uncomfortable in the past so this is something I want to avoid if possible. I find it surprising that he is getting irritation now, and not directly after the last TURBT. Any advice would be greatly appreciated. 

Nicky 

  • Hi NickyRJ , Welcome to the forum. I am so sorry to hear about your poor dad. I am sure hes feeling exhausted. I dont have any experience to offer you, but I am sure there will be someone to point you in the right direction soon. The only thing I could think of to help with getting up and down to the loo is maybe use a bottle, at least he could get a bit of rest.  I can hear your concern in your post, perhaps contact his cancer nurse specialist to let her know hes struggling. She may be able to help. Look after yourself too. Keep in touch, the folk on here are so lovely , we steady each other through the good and bad bits of this cancer journey. Take care

    Much love Angela x

  • Hello Nicky, 

    Welcome from me as well. I have experienced irritation of the bladder at times over the last 7 years despite having always had Foley urethral catheters since my last TURBT in 2018. UTIs have occurred maybe twice per year on average. I have noticed that some citrus fruit juices can aggravate my bladder, particularly grapefruit juice. The only thing that seems to help somewhat is drinking vast quantities of water. It has become a habit: 3-4litres per day.  This may not work too well with your dad unless it settles the overactive aspect as well. I have found more recently that certain spicy foods can set me off with a sore bladder - but this does not always happen, so it may just be coincidence. I've not had any prescription medication for irritation of the bladder, only antibiotics for the UTIs. I hope you find something to help your dad, perhaps from a more sympathetic CNS or perhaps even a resourceful pharmacist.  Ray x    

  • Hi NickyRJ,Welcome to the group.I’m sorry your father is suffering.It is worth looking at diet as some foods/drinks will irritate an inflamed bladder.Cranberry juice is acidic and although it can be good at preventing UTI’s it can cause irritation,anything citrus too.I found tomatoes and onions were the worst for me but we are all different and some are not affected by diet at all.Pear juice was more soothing than other fruit drinks.Keeping up a good fluid intake is best even if there are a lot of loo trips.It’s worth checking that no urine infection is present.Best wishes Jane 

  • That must be so exhausting for your dad. I know that condom catheters are available for men to wear at night (usually with neobladder & night continence issues). Might be worth exploring that option?

  • Hi NickyRJ

    My husband has had similar problems and is  has recently started  Mirabegron (after prostate surgery some years ago).. So I know when one is having to get up regularly to use the loo in the night how tiring that can be and how one is tempted to drink less as a result. But drinking around 2 litres daily does dilute the urine and that can help with the pain so easing the flow.

    I no longer have a bladder, have  a stoma, so my nights aren't disturbed. The idea of an overnight bag for my husband or a bottle (or quite frankly a bucket) by the bed didn't get anywhere I'm afraid - 'patient resistance'. But both seem preferable to me to getting up all the time.

    Plain tap water is best for us  keeping a bottle in the fridge makes it more refreshing and to make sure I drink enough I use those exercise bottles so  I hit my target. I will admit that I haven't convinced my husband to do the same but he does now drink a bit more and that seems to help.

    All the best,

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