Relentless UTIs after Hysterectomy

Hi, Cakenport,

after my hysterectomy I was unable to pass urine and had to learn to self catheterise, this in itself is a risk factor for UTI’s. I had several courses of Nitrofurantoin and decided to try alternative remedies. I started taking a supplement called D Mannose, the urologist recommended this but won’t prescribe it! 
I went nearly a year without a UTI which I believe was down to this but since the cancer has returned and spread I have had 3 lots of antibiotics since September so whether my body got used to the D Mannose I don’t know but it may be worth trying???

hope it resolves for you one way or another as I know how miserable it can be on top of everything else.

good luck 

Marilyn xxx

Hi Cakenport,

me again, I just remembered something my Gynae CNS suggested, sometimes UTIs can be down to vaginal atrophy and she suggested I try a vaginal moisturiser called YES (I know!!)  again it might be wor looking into, didn’t work for me though

I too was plagued by recurrent UTI's. Awful! If you have another infection within 3 months of a previous infection this is considered to be a recurrence of the original infection, which was not fully eradicated by the initial treatment. The NICE recommendations are to change to a different antibiotic. Your GP hasn't done this. I always found Trimethoprim more effective. You also need a minimum of a 7 day course of antibiotics or sometimes 2 weeks to ensure the UTI is completely eradicated. There is a great organisation that can advise on UTIs which has really helpful factsheets for both patienst and GPs ( who often treat inadequately) https://cutic.co.uk/. Hope this helps. xx

Cakenport, have you spoken to your consultant or CNS about this? It might be worth an email as they may have more experience of this and be able to advise your GP. I’ve read about abx being given for 6 months for example - I had this once for a skin issue where I took a low dose of antibiotic every day and then gradually reduced but then maintained a very low dose for a set time then saw what happened.

Yes, after 2 years of recurrent UTIs I insisted on a referral to a urologist who prescribed 6 months of a low dose antibiotics as a prophylaxis to let the bladder wall heal. It worked a treat and broke the relentless cycle.

Thanks Nanabear. Not sure how you manage to self-catheterise but you deserve a medal for that. I do have some D Mannose in but I had to stop as it played havoc with my acid reflux and stomach, but maybe I need to try again and time taking them with better meals. Thanks for the tip on the moisturiser too. I am seeing my consultant every 4 months with next one in Jan so I'll be sure to mention it. I'm wondering whether I have Atrophy or Labial Adhesion as I defo don't feel right.  (the fun never stops, does it?) x

Very helpful Jagger46. Thank you.

 MarmiteFan59I don't have an email for my CNS, just a phone number and I felt bad yesterday to bother them for something so trivial so I've done another econsult with GP but I will call them if I don't get any help from them. I'm seeing my consultant every 4 months, annoyingly I didn't have any issues during last appt and I was so taken aback by my surprise internal examination with 4-person audience it went out of my mind. 

Hi jagger46,

that’s really useful info thankyou 

Cakenport IT’S NOT TRIVIAL! Persistent UTIs are stressful and can weaken your system. Seriously girl, give them a call as they can then advise your GP. Let them decide the priority!