My mother, grandmother and great aunt all had endometriosis. My mother had it so severely that, after her laparoscopy at age 19, she was told she would never have children — the surgeon could hardly identify her reproductive organs for all the scar tissue present. A little over a year later, she was married and had given birth to me. Despite her doctor’s encouragement to try and have another child, she had a radical hysterectomy at age 20, when I was 4 months old.
Suffice to say, I grew up knowing that endometriosis was likely in my future. Plagued by heavy cycles that didn’t respond to Aleve or birth control since age 12, I too was officially diagnosed after my first laparoscopy at age 19. Knowing it’s coming is one thing, but nothing can ever prepare you for the reality of living with it. And after many years of troublesome ovarian cysts, I was diagnosed with polycystic ovarian syndrome (PCOS) at age 24. I took Metformin for about a year, but stopped due to some odd side effects. The diagnosis of PCOS is now in question.
I have a long and varied collection of anecdotes and advice as a woman both living with these disorders as well as someone who spent many years learning everything people would teach her in family practice offices, rape response and public healthcare/gynecology clinic. That said, I am not a doctor or licensed nurse, so please take my advice and stories as what they are: advice and stories from someone who has been there, not from someone who can write you a prescription or diagnose you. Only surgery can diagnose endometriosis and adenomyosis. Do not be swayed by anything else.
This blog is intended to be a personal-story-fueled supplement to the soon-to-be-live EndoSucks.org. I hope that Endo Sucks! can be a full-fledged nonprofit someday soon.
Any questions or comments can be left on any of the Endo Sucks! postings or e-mailed to me personally at firstname.lastname@example.org