ongoing cystitis

[janfarrugia]

I had radiotherapy in 1999 for cancer in the vagina. . For the past 8 years I have suffered from UTIs/ cystitis. Initially I controlled it through cranberry Ju ice, yogurt, cystopurin, barley water and drinking gallons! Over past 4 years I have had to resort to antibiotics: initially a week’s course would work. Then the infections came back sooner and sooner so for the past 2 years I have been on continuous prophylactic antibiotics rotating mainly between Nitrofurantoin and Trimothroprin to try and prevent me becoming resistant to any one type. Over past month I have been prescribed Cefalaxin but this caused awful diarrhoea and didn’t work so now I am back on Nitrofurantoin- full dose for 2 days so far but can still feel the infection hasn’t gone

I also have bile salts malabsorption and am struggling to deal with that as recommended medication doesn’t work for me

So my question is - does anyone have any suggestions? I feel like I am becoming antibiotic resistant- and am very worried about ‘what then’? I can’t seem to get rid of these UTIs. I have had all sorts of scans and nothing is flagged up.

Thanks for reading and any suggestions will be gratefully received

Janet. X

[Herdy2]

Morning Janet, Sorry to hear that you are suffering and that you’re understandably concerned about becoming antibiotic resistant.

I am now 13 years into surviving leiomyosarcoma of the pelvis, several major operations, radiotherapy and four sepsis events.

I initially had endless UTIs, treated successfully with antibiotics initially and then the treatments became less successful.

Because I had similar frustrations/concerns regarding antibiotic resistance i asked my urologist if there was anything else available.

I was gobsmacked to hear that there was….iAluril…

(ialuril.co.uk)

I’ve had monthly treatments for two years now and have only had two episodes of infection both treated with Nitrofurantoin.

The treatment has transformed my life and I am hoping that as time goes by my body becomes less resistant to antibiotics and therefore gives me more confidence that I can be treated for sepsis successfully in the future.

Whilst I go to the hospital to have this bladder installation administered by the nurses each month you can in fact have some basic training which allows you to do it yourself at home.

Something I opted out of as I already feel unfeminine after all the medical interventions and this felt like a step too far (despite being an ex nurse!🙈🙄).

Good luck! Hopefully you may also start on the iAluril journey and get some relief and confidence again.

Janet

[Dustyangel in reply to Herdy2]

I too have had the ialuril treatment. Quite recently finished the course. I also really do think this has helped with the pain and bleeding from the bladder and with the other cystitis symptoms. The only thing I don't think it's helped with is the frequency and urgency ,but definitely alot less painful for which I am grateful for. All the best x

[janfarrugia in reply to Herdy2]

Sorry for the late reply. I am extremely grateful and have written to my Consultant to see if he will consider iAluril for me. Do you get it on the NHS or privately?

Many thanks again

[Herdy2 in reply to janfarrugia]

Hi Janet, I get it privately. My urologist gives it to men primarily after prostate cancer issues! He does have a few ladies that he treats but unlike me they only need a few treatments and then seem to cope! Good luck

[janfarrugia in reply to Herdy2]

Thank you. Will let you know if I am lucky

[Dustyangel in reply to janfarrugia]

I got mine on the NHS after I asked to be referred to urology after I ended up in gynaecology A&E a few times I knew it was nothing to do with gynaecology but I suppose due to past medical history they had to rule out anything sinister. It's definitely worth asking about .

[janfarrugia in reply to Dustyangel]

Thank you so much

[Perido]

Hi Janet, have you had investigations for urinary retention and urethral stricture?

I had total urinary retention following my treatment, mostly due to nerve damage during my radical hysterectomy but exacerbated by subsequent radiotherapy. I've needed to use catheters to manage the retention and I've had several UTIs. I feel sure that a fairly strict routine of staying well hydrated and limiting caffeine and alcohol helps to keep UTIs at bay.

I've heard that Hiprex, which acts as a sort of disinfectant, might help with preventing UTIs.

[janfarrugia in reply to Perido]

Hi. I have had numerous tests. Nothing is flagged up except radio damage to the bladder - raised blood vessels etc. I did go for 2 weeks once when I only drank water but it made little difference. I also tried Hiprex which made no difference. Latest advice is to stay on full dosage of Nitrofurantoin for 8 weeks and then drop to prophylactic dose. I have asked about ialurial which another member has suggested