Being diagnosed with a condition that causes chronic pain is never easy, especially one like endometriosis. Why? Because “lady problems” is a taboo subject.
Sex. Blood. Period. Cramps. V-a-g-i-n-a. There, we got that over with.
So, what’s the deal with endo? Not only do we look physically fine, we can’t explain why we aren’t feeling well without sounding like we’re whining about the dreaded PMS!
Dearest endo sufferers: You are not alone. You are not crazy, and it is not your responsibility to suffer in silence.
My endometriosis story is similar to many others out there.
When I first became diagnosed with endo, I had already been suffering for years. Looking back through my journals, I see evidence of it. Side notes about heinous cramps and the resulting impact they had on relationships as sex became increasingly painful, and what seemed to be endless UTIs.
Losing my first pregnancy and, being undiagnosed and totally (perhaps naively) unprepared for the loss, reeling from that devastation.
Then the diagnosis; multiple endometrial cysts and two surgeries within two years. The continuing pain despite the surgeries, and the hormonal treatments my doctor suggested including chemically-induced menopause.
Miscarrying my second pregnancy and having it be no less painful, despite trying to emotionally prepare myself for the possibility, having been diagnosed now for seven years.
So what is life with endo, you ask?
Living with endometriosis is not easy. It is tiring, draining physically and emotionally, and can have a direct impact on your relationships. It is all of these and then much more so if you wish to start a family. There is nothing so painful as knowing you are miscarrying again or struggling to get pregnant after a diagnosis like endo.
It is feeling broken. The temptation to self-blame is overwhelming. For years, I struggled with this incredible hatred of my own body. If I’m being honest, somedays, I still struggle with it.
It is wanting so badly to be happy for that pregnant friend or coworker, but having to excuse yourself to cry when you hear their announcement.
It is apologizing because you can’t keep up. For 18 months after the first surgery, I could not stand up at any point without pain. Standing up and walking across my classroom to help a student was at minimum a 15-minute ordeal.
It is having strangers ask when you and your husband are having a child, and you hope you are smiling when you say soon enough. You turn away so they don’t see you fighting tears as your heart clenches and your self-hatred spikes.
It’s learning that you aren’t to blame and that you don’t have to apologize.
It’s realizing the strength of your relationship- with lovers or with friends- is not dependent on your ability to have a child. Your value as a companion has nothing to do with your endo.
It’s finding your strength and becoming your own advocate. Your self-awareness will draw others who are strong and self-aware, and they will grow dear to you and you to them.
Endometriosis sucks. It hurts, it challenges your expectations of yourself and your future; it does not, however, dictate who you are or what you are worth. Only you can do that.