I have a number of chronic conditions that all seem to be loosely related, but not sure how..
I have:
a) An abnormal vulva - remarked upon at birth apparently, very swollen, labial elongation, hypertrophy of clitoral hood and complete labia fusion until age 13. Had a labiaplasty and hoodectomy 2 years ago. Also have several sebaceous cysts, abnormal dryness, excema and dermatitis as well as several intolerances (to various skin creams and lubricants, wipes, toilet paper, sanitary pads, "feminine washes", bubble baths etc).
b) Abnormal periods - always very regular although sometimes have an extra week of bleeding mid month, but very heavy and very painful, never well controlled by medication. Been getting progressively worse.
c) IBS type problems - stomach cramping, and bowels flit from diarrhea to constipation regularly
d) Weirder issues - excess body hair on lower back, breasts, tummy, thighs, bottom, and all round my face.. Also still have acne at age 22 all over face and shoulders, and put on weight very easily.
e) Breast problems - always very achy and tender, full of "lumps" although only one was deemed a proper lump (fibrodenema?) by GP, nipples tend to be very sore. Have had issues of both leaking "stuff before". I can't examine my breasts as they're usually so achy.
f) Complete intolerance of all hormonal treatments (apparently) - have tried combined and mini pill plus Utovlan (Northisterone) with horrendous side effects every time.
g) Excess adrenaline type symptoms - always prone to anxiety, flushing, rapid heartrate, "ectopic beats", dry mouth, dizziness shaky hands etc.
I have had a full abdominal ultrasound which showed up nothing, have had a pelvic ultrasound, which was normal (due another soon), and yearly hormone/thyroid tests (estrogen, testosterone, FSH, LH and prolactin afaik) which again show up nothing other than raised levels of "sex hormone binding globulin". I apparently haven't got PCOS or a thyroid problem but consultant thinks I could have endo or fibroids or an ovarian cyst..
I don't know my family history well as I don't know my father's family at all and don't know my mother's father's family. I do know that my cousin was born with a syndrome that caused her to be more "male" than female, or something (something to do with absent periods, small breasts and masculine shape). She changed gender eventually.
It's probably just that I have lots of issues that just seem to be related but I'm just wondering if there is something that can cause all these issues?
Have spoken to a nurse about it before and she says she'd think something hormonal is going on, but surely one of the hormone tests would have picked that up?