I'm in my late 50's now, but have probably had endometriosis since my first period (age 16). Unfortunately, although I was diagnosed early, there were simply NO treatments more than 40 years ago. I was infertile. Later in my 40's after undergoing YEARS of chemically-induced menopause, I started having MULTIPLE surgeries (both laparoscopies and exploratory laps) for resection of endometriomas in my retroperitoneal space--(BEHIND your peritoneum), for the same in my right sciatic notch which caused me to have a profound right foot drop, etc. Later, as it advanced into my heart and lungs, I got sicker and sicker. I started on daily Lupron in 2000 and am still using it daily. I am at Stage 4 and now have documented endometriosis in my urethra (requiring multiple and painful dilations), my bladder, my ureters, in the pole of my left kidney, in my common bile duct, my gallbladder (now out), my appendix (removed 'incidentally' during one of my many exploratory laps), in my now removed uterus, ovaries and tubes, my PANCREAS requiring me to use the strongest DIGESTIVE ENZYMES-(-CREON)--ON THE MARKET, my Sphincter of Oddi, Ampulla of Vater, my gut which has EEG-proven constant seizure activity
(EATING ANYTHING IS VERY PAINFUL) . I've also developed mega-colon, meaning that my colon doesn't empty without quite a bit of help--I use massive amounts of mag-citrate, preferring NOT to use too much Senna, etc., as eventually the receptors on which many of these types of drugs work on, eventually stop responding to the drug(s). I've also developed heart problems & severe asthma, both felt to be related to my endometriosis and most recently was found to have endometriomas in my salivary glands, putting my already decaying teeth (from Lupus' Sicca Syndrome) at further risk.. When the disease becomes Stage 4, it is considered to be a disease of the small vessels as well a disease of insulin sensitivity (I've developed Metabolic Syndrome which is correlated with advanced endometriosis--this syndrome includes Type 2 DM (check!), can cause sleep disorders (check!!), as well as fibrocystic disease of the breasts (check!!). Some ALSO consider that anyone with this much involvement is also considered to have an autoimmune disorder. I was previously diagnosed with Lupus (SLE) and APS--anti-phopholipid antibody syndrome (a subset of Lupus) which may cause strokes and/or blood clots--I've had two strokes and two pulmonary emboli. Nonetheless, despite the ENORMOUS amount of pain which I tolerate with the help of good medications and a wonderful doctor, I am aware that between the Stage 4 Endometriosis and the Lupus/APS, my lifespan is likely to be shortened. I've learned to adjust to my 'new normal' and to keep going. What choice do any of us really have?! I am now a MEDICALLY RETIRED physician, but they will never be able to take away my degree!! Hope this information is helpful to someone!!