Our Perspectives

One of the symptoms of BPES is potential infertility. My sister and I had been diagnosed with secondary amenorrhea for years. We always found it odd that no one else in our family had anything like this. A few years ago when we learned we had BPES, it made much more sense that we both had primary ovarian insufficiency. We respect that fertility is a very personal choice and each person has their own views on the topic. For us, neither of us wants to have children. While this could be a devastating diagnosis for many people, we are not upset by it. Of note, we have not seen the need to undergo costly and invasive medical tests to confirm that we are truly infertile. Nor do we see the need to play Russian roulette in the bedroom. For now, we aren’t trying to conceive and we know that if either of us has the desire to conceive in the future, it might be quite difficult via traditional methods.


Since for years, we thought we just had ptosis, I remember being shocked to find out exactly what we had and that it also affected the ovaries.  My mom cried, feeling like “How could I have not known?” “What else could I have done?”   She was especially upset about the primary ovarian insufficiency part of it.  She felt like if she had known, she would have taken me and my sister to a specialist when we were younger.

Now by contrast, when I found out, I was relieved.  I can’t really explain it, but I had always felt like a piece of the puzzle was missing.  And when I found out exactly what I had, it just made so much sense.  I had never had a desire to have children, so I really wasn’t upset about the infertility part.  I did feel badly knowing that my parents would have loved grandchildren (Fortunately, one of my brothers took care of that for them).

I have always thought that if I ever decided I wanted children, I would just adopt.  I know that taking fertility drugs or doing IVF would be a possible route to go, but it is just not for me.  I am the type of person who believes that if I wasn’t born with the right parts, it wasn’t meant to be.  I’m not going to take fertility drugs or go through a procedure to force it.  I know some people who have gone this route, some with and some without success, and I’m not judging.  I think everyone needs to decide what is right for them.  I’m just saying it is not for me.