Bladder issues (6 years post RH)

Hi there!

I wondered if anyone here has had similar issue

Had a RH 6 years ago (stage 1b) lymph nodes removed but no further treatment.

Since then I’ve had recurrent UTI’s, progressively getting worse.

To cut a v long story short I was referred to Urology. The nurse there said she found non visible blood in my urine and referred me for cystoscopy and CT scan.

Obviously the last time I had a camera in my privates they found cancer so am just feeling a bit uneasy.

She told me not to worry and it’s precaution given my past medical history (but when my cervical cancer was discovered it didn’t even show on the colposcopy as it was adenocarinoma which sits higher up. )

I just wondered if anyone here has had similar bladder issues (who hasn’t had radiation) and what was outcome (I don’t mind if u post about recurrence ) even if it’s not worst case scenario I wonder what can be causing me to have so many.

Thanks you x

PS they will look at vaginal estrogen if necessary but they want to do this first .

Hi HAPZ and welcome

Have you been checked for urinary retention? Occasionally a RH can cause long term urinary retention which can result in UTIs. Tests to check for urinary retention include bladder scans or urodynamics.

I had total urinary retention immediately following my RH (in 2017) and had to self catheterise. I eventually regained a reasonable amount of natural bladder function but still had significant retention (100-200ml) and was advised to carry on self catheterising daily to reduce the risk of UTIs. Following recent advice from a new Urologist I’m currently self cathing just occasionally (about once a week) but I’m feeling cautious about getting a UTI or my retention worsening - it’s a work in progress.

I’ve also had non visible blood in my urine since my RH. I’ve discussed it with various health professionals and no one has considerd it a cause for concern. I was discharged from my 5 year follow up earlier this year: NED (no evidence of disease)

Admittedly I’ve had chemo-radiotherapy but my bladder issues are due wholly or mainly to my RH so I thought my experience might be worth sharing.

x

P.S. I’ve been using topical oestrogen for about 18 months.

Hi. I am 4 years post RH and still have bladder issues. Since my surgery I had sepsis 3 months later seemingly from the bladder. I’ve had tests referred to a urologist and have been put in a very low dose of antibiotics for ever. No one else knows what to do.

I feel your pain. My body just hasn’t been the sane since my RH. I had surgery and lymph nodes taken but that’s all.

I know this probably won’t help much but the antibiotics seem to be doing the trick so far.

Best if luck. X

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Hi Jazza

Thanks so much for your reply!

It’s so reassuring to know that you’ve had non visible blood and no cause for concern.

I had a bladder scan at the hospital last week and nurse said I’m emptying my bladder fine- even though i have to double void and strain to get it all out.

I’m on another round of antibiotics this week for another infection so am just hoping that the urologist will find something to help cure all these infections.

I’m wondering if the cystoscopy that I’ve been referred for is really just a precaution to rule anything out before looking at eostrogen!

I just feel like I was passed from pillar to post at my GP surgery- no one (including the doctor ) would listen to me and I even had a nurse send me for a diabetes test when I kept repeating to her the fact I’d had RH years ago.

It was only when I eventually got Infront of a nurse that actually listened to me and took me seriously that she made the referral to urologist.

Sorry for big long post , I’m just exhausted with the fact I’ve had to tell so many staff at my GP practice about my cancer history and being fobbed off. Lockdown didn’t help,

At least I’m now eventually on a wait list for cystoscopy which is something to be grateful for :slight_smile:

I know it seems minor in the great scheme of things. Psychologically I’d left all this behind me and even coming back onto this website has been a big trigger for me (this website literally got me through each day when I was first diagnosed)

Thank you for taking time to read xx

Thanks so much for your reply. I’m so sorry to hear u had sepsis.

I had my lymph nodes removed also and luckily no other treatment .

I feel guilty as compared to others I got off lightly, but like you my body and bladder have never been the same and it has such an impact on my daily life - including my sex life. My husband is an absolute Saint but it affects everything- I live like a nun - no caffeine, booze, sex as anything can feel like a trigger!

Thanks again xx