Am so glad this forum is here. I've popped in now & then over the past few years, but not said hello. I'm inspired to post by pam's thread..I like the way she has introduced herself! I'm a bit more longwinded 😜
My ED also seems to come from mother & father, although father seemed more marfanoid (with early onset heart disease, hammer toes, died of rupture AAA in his early 70s). Endometriosis also on father's side. Mother's side: hypothyroid, diabetes, various chronic allergies.
I'm a DES daughter (exposed daily inutero to the notorious artificial oestrogen diethylstilboesterol, born in 1953 in the States, with resulting internal reproductive organ birth defects, endo etc rendering me infertile). As an infant & teen, I was diagnosed with lupus, but my mother kept this secret. At 7 a bad fall from a height onto my head caused concussion & severe damage to cervical spine...and, I suspect, possible chiari of some sort.
my lupus diagnosis was finally recovered 5-6 years ago by a brilliant rheumatologist due to the cumulative debilitation caused by decades without any but emergency systemic treatment. By then I had accumulated a typical collection of diagnosed secondaries, inc sjogrens, simultaneous raynauds & erythromelalgia, lichen sclerosus etc Chronic neuro cerebral symptoms are a particular prob for me, happily responding fairly well to a cocktail of daily immunosuppression meds. Immunology has discovered I also have early onset immunodeficiencies running alongside the infant onset lupus
I have a rather more complicated form of spina bifida occulta, which we think plays a significant part in my complex persistent pattern abdominal & pelvic problems (structural, soft tissue...gyn + irinarurological tract + bowels + neurological etc etc)
My EDH has been a hassle ever since I can remember: all the usual stuff, with especially big feet probs needing bespoke orthotics from an early age (equinus contractus etc) resulting in forefeet bursitis & Mortons neuromas. Also, paroxysmal haematomas in extremities + orally & early onset prolapsed piles leading to full on haemorrhoidectomy in my early 30s.
Am especially interested at the mo in understanding more about my chronic abdomen/peritoneum symptoms
PS here is a good link explaining the spectrum of spina bifida occulta issues:
If anyone here is living with SBO, I'd be very glad to meet up