The Endometriosis Association gives us a good overview of the disease:
“Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body.
Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum.
In addition, it can be found in caecarian-section scars, laparoscopy or laparotomy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum. But these locations are not so common.
In even more rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain.
The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways.
Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a “frozen pelvis.” “
Sounds scary, right? The technical definition is one thing; the reality of the disease is another thing entirely. It is far too elaborate to be summed up in a universal way, largely because it is such a sneaky disease and everyone experiences it differently. Nobody knows what causes it, but there’s a lot of theories. There’s no surefire way to cure it, but we can mask it with birth control and pain meds until we have a hysterectomy. It becomes part of you — you are a woman with endometriosis — but it (hopefully) does not control you.
My definition of endometriosis is long and complex. Endometriosis to me has meant pain and fear and shame. It has been many missed days of class, from middle school through college, and the creation of rumors as to why I was gone so often. It has been heating pads, copious amounts of pain meds, multiple operations, throwing up from pain (or pain meds). It has meant trying every type of birth control (and I do mean every) and having them fail. It has meant countless trips to the emergency room since I was 16 and blacking out in the bathroom at work late at night in your mid-20s. It has been numb legs, hernias, rebound headaches, friends who don’t know what to make of it, partners afraid to touch me. It’s meant going from Lupron (a drug which puts you into temporary menopause, an ultra-fun experience for a 20-year-old) with no positive results to taking Clomid (a fertility drug) to see if you can ovulate at age 24, failing, and the deep cut of being told you’ll need in vitro fertilization because of your uncontrollable cycle. It has been ‘friends’ trying to buy my codeine in high school and asking for one of the morphine prescribed to me at 21, which I rarely take because I hate how it makes me feel. It’s explaining the raised little scars on your hips and tummy from where surgical tools went in to laser scar tissue off my pelvic nerves and blocked fallopians. It has cost me pride, relationships, a job, my bellybutton and a lot of hours in bed when I should be out with friends or hunched over my desk panting to catch my breath that I can never get back.
But amazingly, it has brought me a significant amount of good things. It has meant learning how to handle with what I cannot avoid, how to soldier on, how to smile and go on when I just want to cry and how to be my own advocate. It’s meant working my ass off and graduating college with high honors, three degrees in four years, honors as an advocate for women and a 3.89 GPA despite having percocet as a really lousy study partner. It’s meant learning how to listen to my body, learning what I want most in this life, sorting out the true friends and loves from the the chaff (for the most part), being strong for myself and others and discovering how much I can truly endure and overcome.
There’s more to it; there’s always more. But that’s the basic definition of “endometriosis” for me.
How do you define your endometriosis — as a survivor or as a supporter?