Having endometriosis is such a complicated issue so I chose just a fraction of what we deal with to try and give you a glimpse of what having endometriosis means for the 1 in 10 women who suffer with it.
First and foremost there's the pain, both the physical and emotional.
First I'll cover physical. For me my pain at its most extreme feels like my internal organs are in a meat grinder, at this point the pain is all consuming, I can't stand anything touching my belly, I'm nauseous and for me it actually triggers seizures. Yes, you read that right. My pain gets so unbearable that it causes me to have seizures. I will have them back to back for hours until my pain is under control(now I do have them when my pain isn't as bad and I have many other triggers, pain just happens to be a big one and because of my endo its the most common trigger). This is an all too often occurrence for me. On a good day my pain is just a constant deep ache in my pelvis, like I'm wrapped in barbed wire. Its distracting but I can push it to the back of my mind and ignore it. Well try to anyways, I rarely can for more than a few hours.
Now for the emotional pain that having endometriosis causes. I think the biggest ones are fear and uncertainty. Fear that I will never have a day that isn't tinged by pain. The uncertainty that my pain can go from bearable to unbearable in an instant, without warning. The uncertainty that I can never know how I'll feel on an given day, and never being able to commit to anything until right then because my pain can change in the blink of an eye. Fear that I may never be able to get pregnant and if I do the possible complications that endo brings to pregnancy. Uncertainty that if I can safely carry a baby to term that I won't be able to be the kind of mother I want to be and the mother my children deserve because of the pain. The fear of where the endo can spread and the problems it can cause. Uncertainty of the next surgery knowing that it won't be my last. Maybe the last for several years but knowing full well that a dr can never guarantee that this will be the last. Fear knowing that just the fact that I have endometriosis that I have a 37% higher chance of developing breast, ovarian or endocrine cancer in my lifetime. Fear that my sister could develop this awful disease to, or worse, that I could pass it on to my daughter. Morning after morning one of the first things to register is pain. Then disappointment. Disappointment that the day will undoubtedly be tainted with pain. Disappointment that again I can't do the things I used to without causing great pain. Disappointment that I'll see the pain and anguish in my parents eyes as they watch me writhe in pain. The helplessness I see in Sam's eyes as he tries to comfort me. Disappointment that it will be another day of just surviving, not living. Disappointment that it will be another day in isolation.
There's the never ending exhaustion. When the pain is so bad that you can't sleep and even when you do sleep the pain invades your dreams. You dream of randomly collapsing, of being stabbed, of giving birth, anything that causes extreme abdominal pain. That was me last night and most nights. Sleep is supposed to be an escape, a time to recharge. Not with endo. There is no escape, no recharging.
Then desperation and hope, they're kind of the same emotion. Desperate for the pain to end, hoping it one day will. Desperate for there to be some sort of new treatment and hoping there will be a cure by the time your daughter is living this same hell. Hope that she never will. Hope for this to be the month that those two lines show up. For this to be the baby that sticks, the baby that you get to bring home. Desperate for loved ones and doctors to understand that this pain really is this bad, that our pain is real. Desperate for someone who "gets it" and heartbroken that someone else is living this same hell. Desperate for the public to be educated. Hopeful to never have to hear the ignorant comments: "its just a bad period." "all women have cramps" "all the tests came back normal, there's no physical reason for your pain." "have you tried......." "my aunt/sister/mom/cousin had it and after she had kids/hysterectomy she was fine!" "just get a hysterectomy, that'll cure it!"
But most of all it means showing strength. Showing the strength to never giving up. By being your own advocate. By being there when a sister falters in her resolve and leaning on others when you yourself falter. Strength to ask for help when we need it. Strength to spread awareness and education knowing not everyone will agree. And the strength to wake of every morning knowing it will be another day of fighting.
