Hi Well l can relate to Sophie,s symptoms, and amanda,s experience in getting diagnoses, suprising or shocking its not that unique for some women to go on years with symptoms and pain. l also had frequency, soreness, heat, in urethra passage right groin up my side, chronic lower back pain, and generally felt unwell much of the time. Initially put down to post op, csection-sterilisation, had d and c, pills, so then thought hormonal, had laprascope, nothing found, adesions confirmed as already known about, so more pills, l also got inflamed gall bladder and had that removed, l had heavy flooding monthly and became aneamic, so agreed to hysterectomy, even knowing they dont need to remove uterus for heavy loss, either laser or meds can do that, but l was desperate over the symptoms and affect on lifestyle, partner, 2 young kids, felt they would surely find cause when doing hysterectomy, but symptoms remained, dissapointment putting it mildly. My symptoms had also gone on many years, by which time it was put down to usual for many when diagnoses following tests, xrays, scans, show normal, so then it becomes phycalogical, l did have pylonephritus in this time, had xray with dye for that, still no result. Eventually l found a more enlightened or at least sympathetic gp, who referred me to urologist who did cystascope, which showed damaged bladder wall, biopsy confirmed intersticial cystitus inflammation of urinary tract and bladder.. Put on meds, no cure but treatment for symptoms which took away 90percent of symptoms, l was also told about support group, c.o.b, and discovered lots of women suffer for years, with no diagnosis or treatment, left to it, some quite young teens twenties, some in 70s, it seems if you get anything a bit unusual, not common, many gp,s havent a clue, but the urologists are clued up once you get to them. Wondering if they give you anti bs even when no bacteria found, with ic you can sometimes get bacterial infections, but mostly no bacteria found, but a treatment of last few year for ic is to give anti bs as a preventative, one kefalexin a day, it has been shown to help with preventing ic flare ups, but after over a year for me, lve had frequent nausea, and diagnosed with slight gastritus, so wonder about taking a lot of anti bs, l think they do cause nausea.
Anyway hope the info helps you get a diagnosis, be it ivp xray initially or scope But like amanda its terrible that the suffering and affect on lifestyle can go on years, wouldnt wish it on anyone, being free of symptoms is like coming back to normal living again, so best wishes.
