Early menopause is when menopause starts before age 40, and it affects approximately
Ever since I was a child playing with baby dolls, I knew I wanted to have children one day. But having early menopause changed the way I think about that need.
When I was 5 years old and my little brother was born, I made everyone call me “little mama.” I’ve always been good with babies and little children, and it seemed inevitable that I’d have some of my own.
And then life happened.
My parents noticed my brother wasn’t hitting his developmental milestones, and when he was 3, he was diagnosed with fragile X syndrome (FXS), the leading genetic cause of autism and intellectual disability.
FXS is an X-linked genetic disorder,
My mother and I were tested, and we were both diagnosed as carriers. This meant that I had a 50% chance of passing FXS on to my own children.
We did our research and learned that using in vitro fertilization (IVF) with pre-implantation genetic diagnosis (PGD) testing can virtually eliminate the risk of having a child affected by FXS. Since learning this, this was my plan.
While my brother is high functioning and we wouldn’t change who he is for anything, there would be no way to anticipate how low functioning a child of mine might be.
I got married when I was 30. My husband and I went back and forth about when the right time to have children would be, but we were never in the right place financially.
The average cost for IVF in the United States is $17,000–$20,000 for the procedures and another $3,500–$6,000 for the medication, and often neither is covered by insurance, according to the Advanced Fertility Center of Chicago.
By the time I turned 36, we decided it was time to really dig in and research our options.
While fragile X carriers aren’t technically “affected” by FXS, they can still have symptoms, including neuropsychiatric disorders, pain disorders, autoimmune disorders, and early menopause.
About 20% of carriers will develop primary ovarian insufficiency over their lifetime, and 7% of carriers will experience menopause before age 29, according to the National Fragile X Foundation.
When we finally went for genetic testing, we also tested hormone levels and other indications of health and viability for a possible pregnancy. I was found to have indications of early menopause.
This completely changed our outlook on having children, as it looked like we wouldn’t be able to have any biological children. We now had to reconcile the idea of wanting children with the reality of not being able to have any.
A few years prior, I’d begun experiencing hot flashes and trouble sleeping. I’d toss and turn at night, keeping my husband awake. And in my efforts to get comfortable, I turned down the thermostat so low I practically froze him out of the bedroom.
I’d been experiencing unexplained flushing as well, where my face and chest would become bright red. I just hadn’t connected it with possible menopause, primarily due to my age, because even though I knew early menopause was a possibility, my mother didn’t experience it, so I didn’t expect to, either.
Since I was a carrier of FXS and had had painful periods earlier in life due to polycystic ovary syndrome (PCOS), I had an intrauterine device (IUD). So changes in my menstrual cycle had never been a clue to possible menopause.
I’d also gained weight and just wasn’t feeling comfortable in my own body. All of these were symptoms which, looking back, were indicative of early menopause.
I was kicking myself for not seeing it before and not seeking solutions before. Now, however, I was faced with it. I hadn’t had children yet and had always wanted them.
I became distressed over the thought that I’d waited too long. Yet, it simply hadn’t been an option any earlier.
I blamed myself, my body, and my poor luck for being in the situation I was now in. I’d seen my friends have children, and I envied them. And when I saw my friends still having children, I was inconsolable at times. My emotions were heightened, and I didn’t know what to do with all of my feelings.
It’s hard to think of yourself as a mother waiting for her children your entire life and then change that mindset to a permanent one of a mother without children.
But it can be done.
I do have godchildren and many friends with children I adore and spoil as an extension of their parents, whom I love.
Becoming a godmother of my best friend’s three children was one of the highlights of my life. Even though we don’t get to see each other as often as we’d like, these are very important relationships to me.
I feel that I couldn’t love my own children more than I already love these three beautiful people who were a gift in my life.
Becoming a godmother and then experiencing infertility changed the way I think about having children.
Being a godmother is being a type of mother. I have influence over their lives and contribute to their well-being. I’d fight for them, die for them, do almost anything for them. When they have needed my help, I’ve been there for them, and I always will.
As for my close friends who have children, I am their auntie. It’s not the same relationship as with my godchildren, but it’s close. I have influence over their lives, would be there for them if they need me, and get to spoil them with love (and gifts).
There is no happy ending to this story.
I still have no children and am no closer to having children.
But it’s not a sad ending, either. It’s part of life. I cannot change who I am. And the more days I sit with my situation, and the more days I find people I can talk to about it and relate to, the better I am.
I was always meant to be a mother — just not to a child or children who share my DNA. And what I’ve learned is that I AM one. Not to my own children, but I am a mother to any child in my sphere who may need one on loan.
My husband and I may foster or adopt, or maybe we’ll become one of those couples who travel the world and are envied by all. Either way, I’m not alone, and I won’t be alone as I continue to travel through menopause and life.