When endometriosis meets infertility

Because endometriosis lesions and adhesions are often centered in and around the reproductive system, it has long been established fact that upwards of 30-40% of women who have endometriosis become infertile or have a lot of trouble conceiving.

Think about that – 30 to 40% of women with endometriosis either cannot have a baby, or have to try for years before succeeding in birthing their own child.

Sure, on the bright side, it means that 60-70% of women with endometriosis are still quite fertile.

But let’s look at the numbers again. “This is two to three times the rate of infertility in the general population”, according to IVF.com.

Today, a friend sent me a video about infertility. Please watch this video in order to add to your attempts at understanding the myriad painful emotions a woman with endometriosis has to endure.

It’s not enough to feel like you’re giving birth every month because the endo pain is so bad, but then to find out you actually CAN’T have a child if you’ve been wanting one or just assumed you COULD? Women are crushed, devastated, destroyed by this.

Now, add to that the idea that women still carry around with them even in the 21st century – “It’s taboo to talk about endometriosis because it means talking about my monthly period.”

“It’s taboo to talk about infertility because people act the same way towards me as one who says they have cancer.”

“Well I have BOTH, and it’s destroyed my life, and I am expected to suffer in silence because it’s too depressing for people to know I can’t have a baby, and it’s too embarrassing for others to think about a disease tied to my period.”

Even the Endometriosis Research Center makes it sound like a cake walk, by saying, “While Endometriosis can cause infertility in approximately 35% of women with the disease, with the right treatment and partnership of the right healthcare professional, pregnancy can certainly be achieved by a woman with the disease.”

It’s a fine line, actually. Doctors are still telling women or giving them the strong impression that “you’d better get pregnant now, because endometriosis WILL leave you infertile.”

It’s a myth that endometriosis always causes infertility, but please do not think for one second that women with endo who are infertile can just skip over to the doctor, easily correct the problem, and have a baby right away without complications.

Endometriosis is not what led to infertility for the woman who made the video below. However, her point gets across so well that it is important that everyone sees her video.

What IF? A Portrait of Infertility from Keiko Zoll on Vimeo.

Some of what Keiko wrote on the white board can also apply to those of us with endo – what if we stop defining ourselves by endometriosis? What if we live in the moment instead of living in an uncertain future? And yet, like women with infertility, it seems impossible to stop identifying ourselves by our illness; to stop living an uncertain future; because our illnesses are in our faces, robbing us of our IDEAL lives, stealing precious Time from us.

I made the choice to not have children. People who struggle with infertility have the choice made already, without consent. I may not be ready for children even in my late 30s, but the moment I was told last week that I have a diminished ovarian reserve, the first thing that went through my head was a giant ticking clock, followed by a sense of urgency and panic, followed by a HUGE wave of confusion, since I thought *I’d* decided I didn’t want children.

People can’t understand unless they have their fertility endangered or removed somehow. I’m asking you to watch Keiko’s video, and to share her video, to raise awareness and understanding.

The next time you are strolling through the park, shopping at the grocery store, or walking down your street, take notice of how many parents or parents-to-be are in your line of sight.

The next time you are hanging out on the Internet on your favourite social network, take notice of how many people post about a new baby on the way, or post pictures of their children, or post an ultrasound of a baby in the womb. Take notice, and then really THINK about how that makes a person who is infertile feel to know they aren’t the one who can post such things, who can’t stroll through the park or the grocery or down the street with their biological child or children that they carried to term and birthed themselves.

Thank you.