i am 58, and yesterday i started learning about endometriosis. i looked at the excellent endometriosis uk site a bit and found this forum because people i respect have suggested endometriosis is possibly part of my mix.
following a lifetime of treatment at a handful of different NHS clinics, for what have turned out to be secondary conditions, last year i began to be treated for relapsing remitting SLE and MCTD with sicca symptoms (verging on sjogrens), and also discovered that i was diagnosed with lupus as an infant and teen in the usa, where i was born a DES daughter. i'm now under a very autoimmune-experienced NHS rheumy, and had a year on plaquenil 400mg daily which has taken the edge off some of my persistent symptoms.
in light of this treatment for SLE etc, during the past year, my NHS GP and i have been tackling some of my chronic probs with various clinics including GYN, where aspects of my DES daughter birth defects and lichen sclerosus are being managed. last spring at colposcopy (now to be annual) i missed a chance to talk to my great NHS GYN about pain during intercourse, lifelong frequency of urination and violent recurring UTIs (blood, tissue, leucocytes in urine etc, plus the same symptoms i always had before early menopause, i.e. my irregular periods: fever, severe pain diarrhea, vomitting etc (managed with mefenamic acid 500mg), infertitlity, and a predispositiong to lower back/girdle pain, pelvic pain, painful BMs etc etc). also, now i've discovered endometriosis is in my immediate family: only no one ever talked about it.
basically, i'm a toughie who pretty much looks on the bright side of life. and most everyone tells me how conscientiously i've always lifestyle-managed my health probs. and i try my best to do a good job for my drs. but of course i never really feel well, with all this going on. and i am relatively disabled now. whatever, the UTIs are so aggressive, that understanding them has become a priority.
my plan is to mention endometriosis & my various symptoms to my GP and to my GYN. i imagine they have already thought of endometriosis, but have held off saying anything because all these years i've seemed to be managing relatively ok (with mefenamic, antibiotics and lifestyle choices etc etc).
so, my question to forum is:
need there be urgency in discussing firm diagnosis with my drs....is diagnosis vital?
i already get poked & prodded so much....unless there is an emergency, my instinct is to just get into endometriosis in due course. but, you know, part of me wishes this could've been explored earlier during my years of irregular and agoinsing periods, strange discharges etc....well, it would be good to know what it's all been about, and to feel more informed about managing my ongoing symtoms
thanks in advance to anyone who manages to read all this and reply!