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When Chronic Illness Results in a 'Different Kind' of Infertility

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I was diagnosed with endometriosis about two years after I was diagnosed with pulmonary hypertension, a rare and life-threatening illness. After my PH diagnosis, I traveled from doctor to doctor, each one speculating how long I had to live. Three years, five years, 10 years, they guessed, as if I were a pig at the fair and they had to guess the weight to win a prize. I was 25 years old, and I was devastated.

I was given more bad news: Pregnancy with pulmonary hypertension is considered very dangerous because of the associated risks. It can be deadly for the mother and the child, and pregnancy can add more stress to an already overworked pulmonary system. Just when I thought my heart couldn’t break anymore, I was told I could die if I ever became pregnant.


Even though I had been handed all of this devastating news, part of me
optimistically (or perhaps naively) held out for a miracle. Maybe I would get better, or maybe one day I would be able to have children through the advancements made in medicine.

Two summers ago, I was diagnosed with endometriosis, and was told I would need surgery if I ever wanted to get pregnant because of the septum down the middle of my uterus, and to remove the endometriosis lining my one fallopian tube. Leaving the septum intact would be very dangerous for me, and it would result in a pregnancy that could not survive. I felt as if the odds kept stacking against me.

I know endometriosis can cause fertility issues, but now I find myself facing a different kind of infertility. It would not be the happy surprise I once had longed for if I found myself pregnant. Pregnancy would be an extremely life-threatening obstacle for me, as PH and pregnancy carry a high mortality rate among patients.

Of course, pregnancy isn’t the only way to start a family, and my desire to adopt has always been stronger than other options available. But I wouldn’t want to start a family knowing I may not be around long enough to realize the privilege of being a parent I would truly desire. Because I have pulmonary hypertension, I am not a candidate for surgery to remove the wall in my uterus, and because I have pulmonary hypertension, I am advised against pregnancy.

In an attempt to comfort me, my male doctor went on to say all of this was OK because “I wasn’t planning on having children anyway.”

But that’s the thing – I was planning on having children.

I took parenting classes in high school and studied teaching in college. I worked in childcare centers during my university days, and planned on having children by 29, the age I am now. I had names picked out. I adoringly looked at baby clothes. I thought about how the babies would
look. I looked forward to Christmas mornings and imagined how great my boyfriend would be at coaching a Little League team.

I was planning on having children, but illness took away that choice – and I know endometriosis may take away this choice from others. Having an important choice decided for you because of a disease is shattering, so it is important to be clear about this issue: Having an illness take away your ability to do something is not the same as making a choice.

This post originally appeared on Endometriosis News.

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Thinkstock photo via KatarzynaBialasiewicz.

Originally published: September 6, 2017
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