NIAW: #ThisIsMyStory
In 2017, I first shared my infertility story for the first time publicly online during Resolve’s National Infertility Week that they host every year in April, which was established in 1989. I’ve been participating in some capacity ever since.
What is Resolve? According to their website, Resolve “is dedicated to ensuring that all people challenged in their family building journey reach resolution through being empowered by knowledge, supported by community, united by advocacy, and inspired to act.” The organization was established in 1974 and still provides support groups and partners with volunteers and organizations on advocating for those struggling to start or continue building their families. They do this at the grassroots level with volunteers getting in touch with their local and state legislatures to educate them on their constituents needs for family building support. In addition, they do social media campaigns and help spread awareness through the National Infertility Awareness Week.
What is National Infertility Awareness Week (NIAW) 2022? The theme this year is #WeCanAll, as in We Can All Change the Story, narrative, status quo, etc. We Can All make a difference, have a voice, be a parent, get the support we deserve, etc.
First off, what is infertility? Infertility affects 1 in 8 couples. Let that number sink in: 1 in 8. More common than you thought, right? What I don't know is if that stat includes women (or men) who are not in a relationship and already know they're unable to have children before they even try. That applies to me. I don't know if I'm included in that number because I don't know how those stats are calculated.
A more concrete definition than I can give comes from RESOLVE's Facts, Diagnosis, and Risk Factors: “As defined by The International Committee for Monitoring Assisted Reproductive Technologies (ICMART), infertility is a disease characterized by the failure to establish a clinical pregnancy after 12 months of regular, unprotected sexual intercourse or due to an impairment of a person’s capacity to reproduce either as an individual or with his/her partner. Fertility interventions may be initiated in less than 1 year based on medical, sexual and reproductive history, age, physical findings and diagnostic testing.”
As you can imagine, there are many different reasons why a woman is unable to conceive or is unable to carry a pregnancy full-term to a live birth. If you can't imagine, then all the more reason for you to listen up and for us to create awareness around infertility.
The Nitty Gritty of My Infertility Diagnosis At the age of 15 when I had yet to start my period, I went through a myriad of doctors appointments and tests and was eventually diagnosed with MRKH. It stands for Mayer-Rokitansky-Kuster-Hauser syndrome, which is a condition that mainly affects the reproductive system of women. The condition causes the uterus, cervix, and vagina to be underdeveloped or absent, which prevents pregnancy. There are many variations of these defining characteristics all of which mean the same thing - pregnancy is not possible. In my case, I do not have a uterus, cervix, or vagina, so therefore I do not have a period. I was able to lengthen my vagina through a method called dilation to have a normal sex life, and some women do that through a surgical procedure. Like many MRKHers, I still have healthy functioning ovaries so I am 100% biologically female and still ovulate. This means if my eggs are viable, I can go through treatments and egg retrieval to use a gestational surrogate if I so choose. Yes, I have PMS symptoms without cramps and bleeding. And no, I'm not lucky to not have a period.
I also have Type 2 MRKH, also known as MURCS, which stands for (MU)llerian, (R)enal, (C)ervicothoracic (S)omite and applies to bone abnormalities and/or renal abnormalities. I have congenital scoliosis and fortunately do not have renal issues like many others do.
Coping with MRKH Although I have had it fairly easy compared to others when it comes to my diagnosis and associated conditions, I've still felt ashamed of having it for reasons that I have trouble explaining. I hope you'll bear with me as I try.
This diagnosis is life changing. I felt isolated when I was first diagnosed and for several more years after that until I started meeting other women with MRKH. It was like no one understood me because I was literally the only one I knew with this condition. It's not something that's openly talked about often, especially by teenagers because we already have enough to feel ashamed about at that age.
Five years ago, when I had first written my story at the age of 30, it seemed like all of my friends and cousins are getting married and/or pregnant. While that has died down a little, I still sometimes feel like I'm the one in the corner that nobody sees or hears. I still sometimes feel like I don't have a voice. Not when the cultural expectation is that women should get married and pregnant by a certain age or else something is wrong with them. It seems like society as a whole doesn't care that some women don't want to have kids and/or are unable to do so. This makes infertility awareness that much more important.
While I want to get married, I used to want to get pregnant. Over the years I have accepted pregnancy will never happen and I struggle more with the fact that the choice was "taken" from me. I'm more upset that I didn't know this was possible than I am that I can't get pregnant. Don't get me wrong, not being able to get pregnant does still bother me now that I’m getting older and I feel like time is running out for a uterus transplant if I felt like I changed my mind at later time. Keep in mind that the choice of whether or not to get pregnant was taken from me and that hurts.
It's a pain that will always be with me.
Why I Continue Sharing My Story The more I talk about it, the easier it is for me to manage and I rarely think twice about it anymore. After 5 years, I’m accustomed to talking about it so it’s not as nerve-wracking as it used to be. What helps is one of my mottos, “be who you needed when you were younger.”
Don’t get me wrong, I do still have awkward moments where I don’t really know how to handle a conversation about periods, pregnancy, childbirth, or menopause. However, I’ve figured out how to eloquently change the subject or bow out of the conversation.
