Still have pain after turbt in April

Clare. Don't suffer in silence. Talk to your nurse again. I found GPs are not always the best at dealing with bc problems. If my nurse did not have the answer, she would speak to a urology doctor and get back to me. Hope you get the pain sorted. Best wishes.

Hi rily

Sorry, I wasn't very clear. When I spoke to my nurse she said wait until August and see if I'm still experiencing same problem.

It's manageable while I'm at home but it's a pain if I go out and on long journeys.

Also a little worried that I've been working from home since March 2020 but on 1st September I will be going back to travelling the length and breadth of the county again 2-3 times a week and sitting in 4 hour conferences

I will mention to GP when she calls on Monday,  she checks in with me weekly. Maybe my bladder is now a little sensitive and maybe there's something I can take to settle it. 

Thanks for your response 

Sending love 

Clare

My bladder was certainly more irritable after TURBT so I needed to empty more frequently but not as bad as you describe. Although it sounds counter productive, it is worth making sure to drink plenty of water to flush through. Hope GP can suggest something.

Hi teasswill

I drink about 1.5 litres of lemon water a day and I have changed my coffee to decaff and am avoiding alcohol as I know these can be irritants.

I am only 46 and I visit the toilet more often than my elderly mother... ha ha.

I will mention to the GP again about the pain on Monday because it sometimes wakes me up.

Thanks for your response

Sending love

Clare

Hi Clare

I was traumatised after my 1st TURBT.  My nurse said that I just have one of those bladders that doesn't like being messed with.  I felt so bad after it that I'd rather have had both boobs, an arm, & a leg off than go thought that again, or die.  But after having several TURBT it sort of settled down.  Now for my last 4 I've had the urethra pain upon urination, it's quite brutal as you will know.  I was going to the toilet every 10 minutes, although at night I could hold my bladder for a few hours.  Actually I was so scared of the pain that I was trying to put off going to the toilet, & when I went I'd struggle & just do a tiny trickle, yet I still felt desperate to go.  I mentioned it to the nurse, new hospital new nurse, long story, but she just said that it was normal.  I've had MMC but didn't tolerate it well as my bladder itched for an entire week after the first dose, so I didn't have any more.  I had Epirubicin in January & I had bad urethra pain again.  it starts just before I urinate, during urination, & continues until I have the next weee 10 mins later.  Although it took a few months to get back to normal, I feel there's still something going on there but that's another story.  When I had my Flexi the urologist seemed to think that I'd had no problems, so when I see him again for my rigid I will put him straight on that.  I couldn't speak to him after the Flexi as he only popped in to look at the screen & I was desperate for the toilet, so didn't even want to start a conversation with him as I was in pain from it.  Sorry for going on but does that sound similar to what you're going through?

Hi blanket

That's exactly the pain I have. If I walk to quickly or too far I feel as though I'm going to have an accident and when I do urinate there's hardly anything and it's clear my bladder wasn't even full.

I do wonder if it is because the tumour was at the bottom of bladder on the top of the urethra. 

Sounds like you've had a terrible time. Big hugs.

Like I mentioned my GP calls me every Monday to check in so I will mention it again. 

Thanks for your response.

At least I know I'm not alone and this is experienced by others.

Sending love 

Clare

Phew Clare, it is indeed a relief to know that there's others that have the same experience.  I always get a UTI after the TURBT & these days need 2 lots of antibiotics to clear it up, but for the last 4 I was wondering if the TURBT was just taking it's toll on my bladder as things have definitely changed for me.  The thing is when you say anything they nod & smile, & that's it.  Out of desperation I took Codeine with my Paracetamol, I wouldn't normally take Codeine due to side effects but I was desperate, then I worried I'd wet the bed as it knocked me out.  I do hope you get sorted out soon, it's so exhausting.  Keep us all posted  xxx

Hi blanket

I've had a very infuriating morning.

The GP said out of professional courtesy she doesn't want to prescribe anything to settle the sensitivity, so.... I spoke to my nurse. What a waste of time! She said as GP is the primary care provider they should be caring for me between Cystoscopies. So I got back on to the GP who said she will write to my consultant and request my appointment is brought forward. 

I have provided yet another sample which I'm sure will be clear again. 

So....I'm going round and round in circles! Very frustrated. 

Anyway...... enough negativity, I have cakes in the oven and petunias to plant 

Sending love

Clare

Nothing surprises me any more Clare.  The Dr could be genuine, but that's not helping you at all. is it? I had a Dr who prescribed me one medication but not another as he said that it cost too much.  He told me to go back to hospital & tell them that they should be prescribing my meds.  I told him to stick his prescription, walked out & got myself a decent Dr.

I used to beg the hospital for antibiotics ready for my UTI after the TURBT, but they said that I had to get them from the Dr,  Finally my new Urologist gave them to me without me asking!!!!  It's quite ridiculous as I used to call the surgery (before the virus) explain myself, see the nurse who'd mostly just fling my weee straight down the sink & do me a prescription.  Now I can ring the Dr, explain, he'll ring it through to the pharmacy, within 1 hour I have my antibiotics.  although one time the receptionist told the Dr I wanted my womb examining . 

Apologies, I could go on all day   I bought some indoor plants a few days ago, God knows what they are but they're red & pointy, lots of leaves.

All the best Clare xxx

I have recently heard from 2 different people that there is an app, you can point your phone cam at a plant and it identifies it!!! miracles of modern tech...

Denby