“I thought it was a lady event”, some of the husbands apparently said when I hosted a pre-launch event for Endo Project at my house. Some of them ended up joining after our pleas, and some never did. I have nothing against any of these people, but this kind of thing is telling of a situation we need to be aware of. Does an event or conversation about uterine tissue make some people feel so nervous and out of place that they walk away? Perhaps breasts used to be seen that way too, but we have generally gotten past that with all ages and genders rocking pink “save the ta-tas” shirts every October. Yes, breasts are important to care for and I am glad we have made these strides for women’s health, but we have this other hurdle to scale now, and it warrants attention. No, uteruses, ovaries, bladders, and bowels are not as “sexy” as breasts, but they are undeniably important.
No, endometriosis, adenomyosis, and interstitial cystitis are not going to spread throughout the body and directly kill people like cancer, but the effects of these diseases can be just as grave. People may not lose their very heartbeats from these diseases, but they lose their lives. There are both figurative and literal truths to this. For those who live on, they lose some of their dreams and never enjoy the things in life that would have made them feel that they lived to the fullest. I know a brilliant woman with a beautiful heart who is in pre-op as I write this getting ready for her hysterectomy. It was her dream to have a baby someday, but the years and years of scar tissue and the adenomyosis is making a hysterectomy the only chance she has left to be able to even get out of bed and work. She was one of the women who did not have the joy of relief from excision surgery. The ability to become a mother naturally will be gone as of tomorrow afternoon. She is not dying from endometriosis, but she is losing a part of the life she wanted.
Some even graver examples include the very real situations where people with endometriosis do, indeed, die. Some of these people take their own lives because the pain, disappointment, broken relationships, and lack of compassion make life not worth living anymore. They feel utterly hopeless and despairing. Even those of us who are able to have babies naturally can feel this way. I myself remember times of feeling so miserable, exhausted, misunderstood, and burdensome that I contemplated drowning myself in the baths that brought a single morsel of relief.
The others who die are the ones who do so without trying, when they accidentally overdose on medication. When people with endo are given no other options, pain medication becomes the only hope left. These people are not taking pain medication to get high: they are taking it to try to not want to die. They are taking it to get out of bed. They are taking it to finish a report or walk around the pumpkin patch with their kids swallowing their now “only” “5” on the pain scale. It is not about feeling good and avoiding responsibilities, it is about trying to cope with life using the only tool they might be given. Sometimes, this goes awry. Bad things happen. These people need ample pain control, but what they need more is a cure. Chronic coping with dangerous drugs should never be how anyone has to life her life.
So yes, endometriosis affects “ladies”. Yes, it deals with the un-sexy endometrial tissues. But it affects people, all people, so deeply and profoundly that it cannot be ignored. Endometriosis (and her equally ugly sisters, adeno and IC) affect everyone in one way or another. Events and conversations that promote awareness are not bridal showers or shopping parties, they are crucial moments in changing how society deals with a vicious condition.