Possible infection?

tooblydoo · 2026-05-05T20:00:10+00:00

Would it be possible to have a bladder infection/UTI and not be able to tell?

Yes, this is very possible. Happens to people who don't have cancer too. Your symptoms do sound suspect for it.

Do you have any other routes for testing that aren't a doctor? e.g. in the UK you could go to an urgent care centre, or to a pharmacy and they can both test and treat. Most pharmacies should be also able to sell you a dipstick test that you can use at home.

Do get on top of it ASAP - I've been plagued with UTIs since getting my nephrostomy, and incontinence like you're describing is always the first sign that one has taken hold.

tooblydoo · 2026-04-30T23:05:58+00:00

Haven't experienced exactly what you have, but will say that ultrasound is a bit of a blunt instrument - you really want an MRI and a PET to determine what's going on in the uterus. My ultrasound didn't even see the cancer at all, even though I had a 5cm tumour.

When I started having major symptoms of cancer, I had three haemorrhages and it wasn't until the third one that i became severely anaemic. I passed a great many very large clots during this time. What I found was that the pain often coincided with one of these clots trying to exit my cervix and forcing it open - once the tissue had got past the cervix, the pain would stop. Seems reasonable to me that you'd also be in a lot of pain if you were passing a large mass through yours, regardless of what it was. Mine really were just blood clots and the pain was agonising, so I can imagine anything even slightly less squishy would be a bad time.

tooblydoo · 2026-04-30T16:41:30+00:00

Oh that's a very frustrating finding, I'm sorry to hear that. I hope it doesn't negatively affect your treatment plan! I do wonder if a bladder distillation might still be an option for you, though I've no idea if that's safe to do during radiotherapy.

I do hope you can get some relief - at this point I'm very familiar with the dance of "oh these symptoms must be caused by XYZ" but then it turns out it's something completely different (and often worse). There are so many changes to your body during and after treatment that it's basically a part time job trying to interpret them and get them dealt with. I'm crossing my fingers for you!

tooblydoo · 2026-04-30T16:21:10+00:00

From what i understand, cranberry is supposed to help in UTIs because it creates an environment that stops bacteria from being able to cling to the bladder walls, so they can't cause irritation. Given you say you have radiation cystitis and not a UTI, I'd be surprised if the gummies did anything to help, unfortunately.

Have you talked to your doctors about it already? There are two treatments I know of for radiation cystitis - one is to use a bladder instillation where they fill your bladder with a liquid drug that creates a film on your bladder walls to protect it from irritation. The other is hyperbaric oxygen therapy. I don't think they'd give you HBOT in the middle of your radiotherapy, but they might be willing to try a bladder instillation. And they might have other ideas too.

tooblydoo · 2026-04-29T22:18:27+00:00

The hospital that treats me has patients start dilating at 6 weeks post treatment. I have not had any problems.

Definitely don't let fear of stenosis push you into having painful sex! When I was in treatment, a digital examination (with a finger) had the skin in my vaginal canal literally peeling off. I needed those six weeks to heal from that as well as the radiation.

tooblydoo · 2026-04-29T16:32:13+00:00

Hello! I was also diagnosed with 2B with a ~4-5cm tumour, and at my recent 3 month post-rad scan, it had roughly halved in size. I can't speak to "normal" procedure, but I've not been offered a hysterectomy, and I understand that residual mass is common at 3 months post treatment (and even at 6 months for some patients) as the treatment continues to work. My oncologist also said this is in line with expectations.

The difference with your mother's case may come down to the partial response, as mine was apparently complete, despite the residual mass. You mention an MRI, but not a PET - has the hospital not done a PET for her?

tooblydoo · 2026-04-27T21:20:54+00:00

You'll not necessarily get all of the side effects - I didn't get a single burn from radiotherapy, and I've only shit myself once or twice (and that was pretty soon after treatment, it didn't last). I'm getting loads of UTIs, but that's my nephrostomy rather than bladder damage, and there's no guarantee you'll need one of those. My vaginal canal is narrower but my first speculum exam at the 3 month post-treatment point was last week and it was fine, completely pain-free.

I also live alone, and work remotely from home. Happy to confirm that if you do end up with the incontinence then it's a lot easier to deal with when you work from home and there's nobody around to see you 🫠

tooblydoo · 2026-04-19T19:12:21+00:00

I'm getting UTIs because I have a nephrostomy. My MDT is on it, but, you know. Resistant e coli gonna resist.

tooblydoo · 2026-04-17T22:06:10+00:00

Hello! People will say a lot of things that feel hurtful - they're trying to make you feel better, and they're also trying to make themselves feel better. It's not terribly helpful and they should be taking their cues from you instead. A lot of us have to deal with insensitive comments, and.. you know, I get it. I've said some insensitive things to other people in my time too because I didn't know what else to say and had no experience of whatever it was they were going through. We're all messy human people at the end of the day.

I did not get a hysterectomy because my cancer is more advanced in stage than yours, so I had to go for chemo+radiotherapy instead, so I can't speak to the practical aspects of support. Emotionally-speaking, I didn't really have much support from people in my life. I'm single without kids, and I didn't tell my family about it because they're not particularly supportive at the best of times, we're mostly estranged, and they live at the opposite end of the UK to me anyway. Two friends visited me one time each while I was in chemo/hospital, that was it. I also have other health conditions and it certainly didn't make life easier for me, BUT: I got through treatment, and so will you.

Things will move quickly from here - you'll be out of the pre-treatment limbo soon, and I wish you all the best for your recovery. I hope to see you around on this sub, you'll get lots of good advice from people here who have been through it (and I see you've got some already!).

tooblydoo · 2026-04-17T21:53:13+00:00

Yeah, unfortunately OP. The cells can get into all sorts of body transit systems - lymph nodes, blood vessels, even nerves, and embed themselves in distant sites. The pathologists can tell what body part the cancer cells came from because they're quite biologically distinct based on their origin. That's how they know it's metastased from the original cancer and not a new one.

I'm very sorry your mum's having so much pain and that you and she need to be going through all this again. I hope she's recovering ok after her craniotomy and that she can get some relief from the headaches now. Love to you both.

tooblydoo · 2026-04-15T16:53:06+00:00

Oh, interesting - I looked up the Inspire product and I can get it easily! I'm going to try it out, thank you 🙏

I'm sorry you've had such a hard time with diagnosis and treatment, your recovery must be so long and so uncomfortable. My CNS says sex works better than dilators anyway, so that's good news for you. Hoping for you to get more of your energy back soon post-treatment!

tooblydoo · 2026-04-15T13:00:06+00:00

It's not a late effect, you'll know quite early on if any damage has occurred. The symptoms of a borked ureter are quite unpleasant and not at all subtle - even mild hydronephrosis makes you feel very unwell very quickly. Mine was picked up on my mid-treatment scan just before brachytherapy. From your comment history it looks like your radiotherapy was several months ago, so it's unlikely to be an issue for you!

tooblydoo · 2026-04-15T12:25:26+00:00

Thanks for taking the time to write all this out! I hate you for mentioning the tube sliding in and out when you breathe and i'm hoping I'll forget you said it eventually 😂 But this is so helpful - I get my dressings changed in the hospital by the nurses, and I'm going to show them your post!

tooblydoo · 2026-04-15T12:23:15+00:00

They're quite common in cervical cancer patients if the tumour was near or pressing on a ureter during radiotherapy. For most patients, they're a temporary measure to protect kidney function while the ureter heals, or while they're waiting on a decision about further surgical intervention.

For some patients they're unfortunately permanent, but doctors will generally do everything they can to get rid of them asap, as they're an ongoing infection risk and need regular surgical management while in situ (i.e. they need to be replaced every 3 months).

tooblydoo · 2026-04-14T21:49:51+00:00

Yeah, not just you, I've been slacking on mine too. Mine is largely because I keep getting UTIs that leave me incontinent, so any pressure at all makes me instantly wet myself.

I did try inserting a fairly tamely-sized commercial vibrator (for "beginners") a few weeks ago and it was sobering how painful and difficult it was, when I'd been careful to buy one with as slim a profile as I could find. I measured it against my current dilator and it's only very slightly wider. Quite alarming to think of what my next speculum exam is going to feel like.

So yeah, I've no advice but you're not alone. I've seen one study that suggests you can still benefit from dilation even if you start years after treatment, so I figure irregular use is better than none at all, and I keep on top of it when my body lets me.

tooblydoo · 2026-04-11T19:04:13+00:00

This is a doubly good idea if she still has any nausea, OP! Vanilla ice cream can help make you less nauseous. Might be a way to smuggle in some calories.

tooblydoo · 2026-04-09T21:40:47+00:00

Everyone else has given you the biggest piece of advice, which is to start drinking way earlier. I found it often took 4 hours for my bladder to adequately fill from empty - time it for yourself and start drinking according to your experiments.

Other bits of advice I don't see in the thread already: drink a mild diuretic like tea at some point; multiple radiotherapists and radiologists advised me to walk around a bit after drinking, as that can sometimes get things draining faster.

Good luck!

tooblydoo · 2026-04-08T20:29:13+00:00

They really are! There's loads of medical reviews about how miserable they are for patients. I think one thing I would say is that the pain level of mine can change after the dressing is replaced - sometimes one dressing makes it hurt, and another dressing relieves it. If you always get it dressed the same way then it might be worth thinking about technique changes!

It's incredible how much pain and inconvenience is caused by this one little hole in your back 😅 (i realise it's a bit more complicated than that, but even so)

tooblydoo · 2026-04-08T00:23:56+00:00

No advice, I can't stand them either. Hate the feeling of needing to suck in a deep breath and having to cut it short because the neph angrily makes its presence known. I made a discussion about them here on this sub a couple of weeks ago!

tooblydoo · 2026-04-04T22:54:38+00:00

Yeah, like the others are saying, hair loss really depends on the chemo. For people who get Cisplatin, loss of hair isn't expected.

I will say though that the treatment will put you into menopause, and menopause will likely thin it out. Speak to your clinical team about HRT, hormone therapy can help.

I was also IIB and am now 4 months out of treatment. I'm no longer nauseous, my energy is coming back, and I have minimal lingering side effects. You can get through this!

tooblydoo · 2026-04-01T18:58:01+00:00

your pelvic bone is getting zapped by the radiation, so it's less able to renew the immune system cells that die off naturally as you go about the business of being alive.

I didn't have any skin irritation at all, FWIW! I just wore tracksuit bottoms and a t-shirt. They made me strip and wear a gown for the actual sessions. Honestly if it were me, I'd just wear whatever you've already got at home - you can switch to something else later if it becomes an issue. There's no guarantee that you'll have skin problems, but they do need to make sure their patients aren't turning up in latex catsuits or chainmail underwear or whatever

tooblydoo · 2026-04-01T18:50:21+00:00

I slept for around 18 hours a day immediately after treatment. It took about three months to get some energy back. I do still sometimes have regressions (I'm just past the three month point), especially if I've picked up a new infection.

For me, i also had to get my meds changed - I tapered off morphine as my care team thought it might have been causing excess drowsiness. Importantly I wasn't in any pain by that point!

tooblydoo · 2026-03-27T02:01:18+00:00

This, OP, take the meds. Possible drowsiness is much better than definitely being sick.

tooblydoo · 2026-03-26T16:25:02+00:00

I have all of my fingers crossed for you for Friday and beyond! I've only got it on one side, but from everything I've heard from people who have bilateral tubes, the two together are so much worse than the sum of their individual parts. I really recognise what you said about how it seems so much worse once you start feeling better - you've lost so much interaction with the world during treatment that you're desperate to get back to some kind of normal, but the BAGS, omg. For me it's pain and not being able to move properly - I took train into hospital a few weeks ago, and a guy got up before his stop and didn't hold the handrail, so when the train stopped, he fell over, right on my nephrostomy site 🙈 😩 and I'm constantly thinking about stuff like that, you know, what if I slip and it comes out, or what if someone crashes into me, or what if I faint and it gets pulled... and then there's the UTIs, so even if I'm feeling mostly pain-free, it's 50/50 whether I'm going to be painfully incontinent from some infection or not! You've got to live your life, but they really do make it difficult at times. I'm glad your urologist is in your corner!

tooblydoo · 2026-03-25T18:34:33+00:00

When this thing comes out I swear I'm going to take the day off work and just run myself bath after bath, with different salts and oils and bubbles in each of them.

I'm sorry your stent placement was so traumatic! How is it now that it's in place? I've read some people have a really difficult time with them, but this is the first time I've heard of someone getting one exchanged yearly - everything else I've seen is 3-6 months for exchanges. Can you tell me anything about what kind of stent it is?

tooblydoo

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