Fertility and Ehlers Danlos Syndrome

When it takes eight years to have your first baby and you celebrate it just before your 9th anniversary, people don’t just wonder but actually, start to discuss your “fertility issues” with you.

The problem is…there never were any.

Most people can’t spell my condition, much less understand it. I get that. I look healthy but I’m really sick.

Ehlers Danlos syndrome, named for the two doctors who discovered it, doesn’t mean much to anybody. And saying I have a connective tissue disorder doesn’t mean much either. When I say connective tissue wraps around your entire body, people only begin to understand what could possibly go wrong. If the materials that glue your body together are defective, then anything that can go wrong will go wrong. And to make matters worst, there is a 50% chance of it being passed on.

I wasn’t stable enough to get pregnant earlier than we did. Just before we had our son, we lost the first pregnancy, a blighted ovum, because it was never meant to be and very quickly became pregnant later. Despite the other obstacles in our way, we were lucky in this area.

I’ve had too many friends who have had to deal with the constant pain of infertility and though they inspired me to write “My Uterus Is None of Your Business,”  their story is not mine.

If I had gotten pregnant before being properly diagnosed with Ehlers Danlos, we never would have been able to have a child. As it was, it was already a high risk pregnancy because of my EDS. But it was a type of risk that the doctors already knew what to look for once I was diagnosed properly. Women with Ehlers Danlos have rapid births, often preterm. I started having issues when I hit weeks 25 and 26 and thanks to modern medicine, didn’t have any issues again until labor.

I think people automatically assume fertility issues because it’s easier to understand than this mystery disease, really a syndrome, that I have. Even my grandmother, who just passed away, asked after my husband’s fertility “issues.” Being my grandmother, of course, she didn’t think the problem was me. But it was still shocking to hear that someone who knew I was sick would still not understand why being sick might get in the way of things.

Along the way, in our marriage, many people told me to get pregnant. They’d never bring it up with my husband but always with me. Friends, family members, total strangers would suddenly start talking to me about making babies. My personal favorite (sarcasm inferred) was when I had to stop working full-time and people said “You should have a baby.” Like as a backup plan?

I was in so, so much pain; pain that has only since gotten under control right after childbirth. Nearly a decade of my life was wasted on pain. My condition doesn’t get better, it gets “managed.” And now that it is, I don’t know what I’m going to do with it.

First step is being the best mom that I can be. Second step is wrapping my head around being able to wish for more than that thanks to good pain management. But let’s not overdo it tonight. It will take baby steps but…I think I’m back in the writing game.

2 thoughts on “Fertility and Ehlers Danlos Syndrome

  1. Hi, my daughter is 17 andhas diagnosed with EDS, she suffer serious pain and it took many years of injuries and misdiagnosis to eventually be diagnosed correctly. We live in South Africa, and since watching clips on you tube and researching online, I realize how little support we have here. She has been in for a ketemine infusion for pain,and thats it. Temgesic has been subscribed but is not available here at the moment. If you have ideas of where I can go, ie wwbsite gor advise, it greatly be appreciated. Terri Allison


    1. I started feeling something was wrong around 18 years old and wasn’t properly diagnosed until age 30. There is a lot of information on the Internet but the best thing I can recommend is to find a good physical therapist and a good doctor for pain.


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