bladder issues

[kath12341]

I have just had bladder scan and flexible cytoscopy all clear but have cystitis like symptoms for about 3 years Lasting any time from few days to 2 or 3 weeks any one else experience this

[Hidden]

Hi Kath,

I haven't had any of these issues myself but there is a condition called interstitial cystitis or bladder pain syndrome that appears to be relatively common in patients with auto immune disease.

I hope this link is helpful

webmd.boots.com/women/guide...

[kath12341 in reply to Hidden]

thanks I did wonder whether this might be the case as I have a friend who has had issue since a hysterectomy and kept going back and forth to dr getting more intrusive test was diagnosed with this. Will ask the uroligist if this could be the case when I go

[EOLHPC]

Hello kath. Sorry you're going through this. I know what it can be like, having coped with it since my 20s - am now 62. Perhaps something in my experience can be useful to you:

My urological infection onset symptoms were always extremely rapid, severe & multisystem with a lot of blood, pus & tissue in samples. My gps prescribed antibiotic courses & I learned a lot about lifestyle management techniques, practicing them conscientiously. But the severe onset & symptoms continued regularly all my life until 5 years ago when we discovered I have infant onset lupus (Vasculitis-like) and treatment with immunosuppressants began. before long, my lupus meds began to slightly damp down my characteristically severe urological infection onset symptoms. But the predisposition to these infections persisted in a recurring pattern. By my early 50s my GP had me keeping urinalysis strip test kits & emergency stocks of of antibiotics at home

Finally last year I was referred to urology, where the chief consultant was horrified that my gps had had very very few urine samples (MSUs) lab-analysed over the decades - now I know that in cases like ours it's v important to have some idea what type of bacteria are involved. anyway, urology set me & my GP up with a lab testing protocol and immunology put me on 2 week courses on co-amoxiclav 625mg held at home just in case. Following rigid cystoscopy with biopsy under GA last summer, the diagnosis urology has given is a set of overlapping conditions (apparently overlaps like this can be typical of immune dysfunction patients - especially those with sicca syndrome/ sjogrens, which I have):

Complex persistence pattern UTIs with probable pyelonephritis

Abacterial cystitis (aka urethral syndrome, irritable bladder syndrome etc)

Interstitial cystitis

As well as the home supply of co amoxiclav, Urology has me on nitrofurantoin 100mg as prophylactic (1x per week mainly). When urology began to investigate me, my lupus & Vasculitis clinic had already just referred me to immunology because my bone marrow blood results showed hypogammaglobulinaemia + lymphopenia. It's turned out I've a history of these 2 immunodeficiencies running alongside my lupus way before any treatment with immunosuppressants began. Urology & immunology are continuing to see me every 3 months while we get an even better understanding of what's going on.

So, I consider myself lucky: nothing seriously sinister had been uncovered, I'm well monitored, and still under investigation, but I am following workable protocols involving appropriate home testing, lab testing & treatment geared to suit my immune dysfunctions. Urology has suggested Hiprex as a possible add on to my treatment plan, if necessary. Here on forum today I was reading a post about mesna, which I'll ask urology about at my next appt.

Hope something in all that is helpful

Wishing you the best of luck with this

🍀🍀🍀 Coco

[kath12341]

Thanks there seems to be a theme coming through of interstitical cystits My friend was diagnosed with this a couple of years ago and I had wondered because the symptoms were so alike . Had the cytoscope yesterday nothing showed up but going to toilet is easier today. I know she has regular rigid cytoscopes done to relive bladder pressure which relives the pain for several weeks it is supposed to be about 6 months I think so shall ask the consultant if he comes up with no diagnosis if it could be this.Fingers crossed I get some pain free weeks. having had a basal cell carcinoma removed from my shoulder 3 weeks ago and waiting to see if they removed it all or need further surgery or something else

[BronteM]

You poor thing...it is the most miserable problem and colours everything else when it's bad. I've had regular bouts of cystitis, and cystitis-like systems since I was at school. A long time ago! In the early days I was treated with antibiotics, then weeks of a revolting mixture called 'mis. pot. cit' which I drank night and morning, but did keep it at bay. I've had kidney xRays and cytoscopys which showed up nothing that was likely to be causing the problem, and seen a urologist a couple of times. About four years ago, my GP and I proved to ourselves that taking a PPI caused similar symptoms, so I had to stop taking them. I also stopped any drinks with caffeine at her suggestion. And Dr Jayne warned me that some people can become more liable to have a UTI if they are taking prednisone alongside rituximab.

Now I'm trying to manage it myself as much as possible. If I'm uncomfortable I use test sticks that I get from Amazon, so that I can tell if there is an infection, and I keep a stock of antibiotics at home for this. If there is no infection, I drink gallons of homemade barley water, lots of herb teas and take cranberry tablets. There is also wonderful stuff called 'slippery elm bark' which is very soothing, though fairly disgusting to drink! you may also find that some foods make things worse.

Doing this has cut down the number of times I take antibiotics a lot, and means I don't panic when the inevitable symptoms start late on a Friday afternoon....

[kath12341]

Thanks i tend to drink extra water when things start and after having the cytosope feel passing water easier. I have a friend who has been diagnosed with itertisculer cyctis sorry for spelling and symptoms match She has had several bladder procedures to rectify leaking and has been given atreatment where they put in a scope and stretch the utehea i think which relives the pain so will ask dr if no exlanation given when i go bsck