“What I heard shocked me. How was such a thing possible? How had this happened to a friend without my awareness?”

Guest Post by Suzan Hutchinson

It is estimated that one in 10 teens and women worldwide are living with endometriosis. They are our friends, our relatives, ourselves.

The first time I heard the word “endometriosis,” I was at a loss as to what it was and stunned that I’d never heard of it before.

I was 20, enjoying dinner, when someone asked, “Have you heard about Pat*? She was diagnosed with endometriosis and the doctor said the only cure is a hysterectomy.”

“What’s endometriosis?” I asked.

Endometriosis was described to me that day as a situation in which the lining of the uterus transplants itself outside of the uterus to the lining of the abdominal cavity and to other organs. And, that when the lining of the uterus bleeds, the transplanted uterine lining bleeds, too–into the abdominal cavity–causing bloating and intense pain, some of which never goes away, and creating scar tissue that causes all sorts of ugly issues deep inside the body. This was not a totally accurate or complete explanation of the disease as I now know; endometriosis is indeed a complex disease.

What I heard shocked me. How was such a thing possible? How had this happened to a friend without my awareness?

I thought of what I knew of Pat. I had no idea she had been suffering physically, and certainly not period wise.

My questions received few answers. Speculation, lack of facts, incorrect information…these all muddied the water for me, so I said I would go to Pat for answers. This received a resounding “NO!” What I intended went beyond bounds, overstepped and intruded on what should remain private and personal. I argued that she might like to be heard, to be understood, to let others know about endometriosis.

“Don’t say anything to her about this. She’s embarrassed and doesn’t want a lot of people knowing.”

Embarrassed.

As I sat listening to the conversation, I wished to have been with her when she talked with the doctor…wished for more information about this thing called endometriosis and wondered where I could obtain it. This was before personal computers and the internet. My only option was to head for the library. The meager offerings provided me little more than what the dinner discussion had.

Pregnancy could halt it and relieve some of the symptoms for some women…temporarily (I could hardly call that a solution). Hormones to halt menstruation were an option, but for women with scar tissue, it offered no relief to the daily and constant pain they endured–it just kept it from bleeding more and creating more pain and problems. And, hormones/pain meds don’t come without risks.

I never did talk with my friend about her diagnosis, or the hysterectomy, or her life following. Protocol of the day dictated I couldn’t approach her with questions unless she approached me first. And, she wouldn’t and didn’t.

Fast forward to 2016.

The world hasn’t changed all that much in all the years that have passed since that Sunday dinner. We still aren’t comfortable speaking freely about matters that concern us. Endometriosis remains an obscure topic for most. We still don’t know what causes it or what to do to prevent it, but we know a lot more about how best to help those who suffer from it. It’s a unique experience for each woman who has it. Many who suffer with endometriosis are invisible and often undiagnosed. We still don’t see it or believe it exists because so many who have it look just like we do. We have a hard time believing in what we can’t see and talking about what we are not comfortable with.

As was stated at the Sunday dinner table so many years ago, so it is often today—how can it be that bad? She worked and carried on just like normal–she didn’t seem to have anything wrong with her. I think it’s all in her head and she should just get over it.  After all, we all have a little period pain at times.

Ignorance breeds insensitivity.

Endometriosis—it may not be what you think. Get the facts.

(* Pat is a name chosen to represent my friend who suffered silently and alone with endometriosis for many years.)

Suzan Hutchinson, a menstrual educator, coach and activist, is the founder of Period Wise. She works for Lunette and has held multiple volunteer roles with the Toxic Shock Syndrome Awareness non-profit organization You ARE Loved. Follow Suzan on Twitter @periodwise and like PeriodWise on Facebook.