pawsies. So sorry you are suffering. I had tried everything you can think of - D-Mannose, radical diet changes, drinking gallons of water, using unscientific, PH balanced shower gel, cranberry supplements etc. I was diagnosed at local hospital after a rigid cystoscopy with extensive Cystitis Cystica (bladder lining covered in ulcers ) and prescribed weekly bladder installations. Symptoms no better after a year of these. Was perpetually told I didn’t have a UTI and antibiotics often refused. I had 6 years of hell.
In desperation I saved up to see Professor Malone Lee privately. He said my story is typical of the patients he sees and that the dipstick tests and lab tests the NHS base their diagnosis on are unfit for purpose. He tests fresh samples under a microscope and counts the white cells present along with the epithelial cells. He found I had a raging infection and asked if I felt ill. I said I felt awful and he commented that he wasn’t surprised.
He started me off on 1g of Cefalexin 4 times a day and something call Hiprex which is an antiseptic that makes the urine hostile to the bacteria that is being pushed to the surface from the bladder walls by the antibiotic. He said if patients who first presented at the GP with UTI symptoms were able to have their urine looked at under a microscope (how they used to test before dipsticks were around) and given long enough courses of old generation antibiotics until the white cells had gone back to a normal level, he wouldn’t have a clinic.
He is disgusted by diagnosis of interstitial cystitis which he said in 99.9% of cases is just a chronic UTI and not a condition in and of itself. He is also appalled at women being told its all in their mind, given bladder training, installations, bladder and urethra stretches, cystoscopies etc which cannot possibly be useful and then being preyed on by people offering treatments and supplements based on flawed science and being ripped off.
Chopping and changing antibiotics and prescribing short courses is what adds to antibiotic resistance. I’ve not had my antibiotic changed once since I’ve started treatment. I’ve had a stronger one added in for flare ups (which he says are part and parcel of recovery )- Each time I see him my white cells have gone down and the flare ups are getting further apart. My life doesn’t revolve around the toilet. I can sleep, I’m not in pain and I don’t feel permanently ill. There is no blood in my urine. I am so grateful to this man and it’s been worth every penny and all the travel to get my life back and stop with the horrible and never ending loop I was on.
If there is any way you could afford a private appointment at Professor Malone Lees clinic I can’t recommend it enough. The condition I was diagnosed with at my local hospital he said isn’t a condition. It’s just what a dreadfully infected bladder looks like. It is disgraceful that GPs are forced to follow a protocol that is ruining women’s lives and that isn’t fit for purpose, is expensive with all the urodynamics, installations, cystoscopies, stretches, counselling etc and which is consigning women to years and years of chronic ill health .