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 have to live. Three years, 5 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 would 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 that 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 that endometriosis can cause fertility issues among its sufferers, but now I find myself facing a different kind of infertility. It would not be a happy surprise that 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 that 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 that 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 that 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. 

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.