Sunday, April 23, 2017

Listen to Understand (Infertility), Not to Reply

For several months I've been planning this idea in my head that I would write this well researched blog post about infertility to kick off my participation in RESOLVE's National Infertility Awareness Week. Infertility is an emotionally raw diagnosis. I realized that the research wasn't getting done because I just wasn't ready to dive deep into a topic that is so sensitive already without the added stress of research. I subconsciously realized that dealing with infertility and combing through tons of information and writing a well-researched blog post was too much for me to handle.

What I can handle is telling you my own infertility story and reasons behind participating in this year's National Infertility Awareness Week. And writing from the heart is less likely to make me cry. I hope. So grab your favorite beverage, maybe some tissues, snuggle up on the couch, and listen up because what I've written here to share with you is emotionally raw and important.


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 Fast Facts About Infertility: "Infertility is a disease that results in the abnormal functioning of the male or female reproductive system. The World Health Organization, the American Society for Reproductive Medicine (ASRM), and the American College of Obstetricians and Gynecologists (ACOG) recognize infertility as a disease. Infertility is defined as the inability to conceive after one year of unprotected intercourse (six months if the woman is over age 35) or the inability to carry a pregnancy to live birth."

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 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 MRKH women, 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.

Now, at the age of 30, when it seems like all of my friends and cousins are getting married and/or pregnant, 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 to an extent. 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 Am Sharing My Story Now
The more I talk about it, the easier it is for me to manage. I've slowly started to come out of my feeling of isolation the more I talk about my experience. The more I can talk about it, the better I feel about myself and I am finally starting to feel whole again. I want that for other women. I want other women to feel like they are not alone. I want others to listen to what I have to say and my hope is that it'll help at least one woman. The more awareness that is spread, the more likely someone will be helped and she won't have to go through her journey alone.

This is why I decided to participate in RESOLVE's National Infertility Awareness Week. I want people to listen, not just to hear what I have to say, but to really listen to understand and ask questions. So if you have any questions or comments, please leave them below, or email me if you don't want to ask in a public forum.

Last, but not least, to 15-year-old me: I want you to know you are not alone.

9 comments:

  1. Thank you for sharing your story and you are not alone. Though I do not have MRKH, the ability to carry a pregnancy was taken away from me too. It does feel isolating at times, especially when so many can get pregnant so easily. I appreciate your honest, open words of support to others in your shoes.

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    1. It sounds like it was a different condition because MRKH women cannot conceive at all due to a underdeveloped uterus or none at all. It is also because there is no vagina or cervix so there's no way for fertilization to happen naturally AND we don't have periods.

      Happy to hear your were able to conceive though despite whatever issues you may have had trying.

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    2. Hi Tonya! Thank you for sharing your story and for being aware of your future interactions with others.

      It sounds like you have a different condition. As the author mentioned, women with her condition have an underdeveloped or absent uterus and thus cannot get pregnant.

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  3. Thank you for sharing your story. I've never heard of MRKH, and I can't even imagine the challenges you have faced. It's wonderful you are bringing awareness! You never know who is going to see this and who you may help.

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    1. Thank you for your kind words! You are so right in pointing out that I don't know will see this and might help them. I'm happy to know that I have created even the small amount of awareness that now you've heard of MRKH.

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  4. Congratulations on your bravery. This will find someone when she needs it the most, and that is incredibly powerful.

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