Tales of Amenorrhea: When it starts young

Women’s reproductive health gets a lot of press; politicians pay attention when it serves them, organizations come under fire when they make people uncomfortable, and we all fight about what’s right or wrong. It’s easy forget that we, as women, are part of this collective story. It’s easy to assume our individual tale isn’t unique. So, it’s easy to keep it to ourselves. Our collective health issues have the spotlight, and we’re standing behind the curtain.

Entering stage left: amenorrhea. (“amen”-ah-REE-ah)

As you may or may not know by now, I want us to talk about amenorrhea. It is “an abnormal absence of a menstrual cycle in a woman of reproductive age.” Abnormal, but not uncommon. Also not largely understood by the medical community, or women who have not been amenorrheic. (Which is OK. I largely don’t understand bad cramps, migraines, childbirth, among other things I have not (yet) experienced.)

It takes courage to talk about the things we’re ashamed of.

It takes very little for a woman to be ashamed to talk about her menstrual cycle, much less the lack thereof. Like UGH, right? Who wants to hear about that? Ew. So we shut up about it like everyone expects us to. Same goes for fertility issues, because if we’re not yet trying to have kids, why speak up (to friends, doctors, or the internet)?

Look, I feel weird buying tampons so I order them online. (From LOLA—all hail!) I hear you. But the overall reproductive health-talk stigma prevails because we feed it. The shame takes over because we don’t know which outlet is right (if any). Holding it all in makes it feel more powerful.

So consider that all erased here. Here, we’ll share the tales of amenorrhea. Your stories are welcomed, encouraged, invited. Your unique experience will resonate with someone. Your journey will help someone else on theirs.

Which, finally, brings me to Emily’s essay.

A fellow dietitian, Emily Fonnesbeck, stepped up to share her amenorrhea story. She’s into getting this conversation going strong.  I’m sharing her story in two parts, starting with where most of us do: self-reflection to try and figure out where this really began. Hindsight is clear, but if/when you’re in the mix, it’s nearly impossible to see the signs. Maybe this will help.

Part 1: Why does amenorrhea begin?

By: Emily Fonnesbeck, RD, CD, CLT | www.emilyfonnesbeck.com

I’ve done a lot of reflecting over the years as to when my infertility issues started.  There are lots of moving parts, which has made it confusing at times.  While at first it didn’t seem so obvious, it definitely does now and I hope sharing my story helps you make sense of your own.

Before menarche, there was already concern.

When I was approaching 16, my mom took me to the gynecologist for an exam since I had not yet started menstruating. I think her concern was in part due to the fact that my younger sister had just started, and the fact that I was older than the average age at menarche (the national average is between 12 1/2 and 13 1/2 years of age).  Everything checked out fine and the doctor sent us home with peace of mind and encouragement to be patient.

Two weeks later I started.

I had one normal cycle before I stopped for a few months. Concerned, my mom took me back to the doctor. (Please note that I really appreciate my mothers concern and her due diligence in making sure there wasnt anything more serious going on. In no way am I blaming her.) The doctor decided it would be in my best interest to take birth control for a few months to regulate my cycles. I actually think that decision was based more on the fact that I was taking Accutane for acne which can cause birth defects. I wasn’t sexually active but I can remember how adamant the doctor was about taking those precautions. The dermatologist was fine with me not taking birth control, which I think really bugged the gynecologist. In all honesty I feel like I got caught in the middle of a power struggle.  

I went on birth control and HATED it.

I suffered through the side effects (moodiness, fatigue, increased hunger, etc.) for about 10 months before I took myself off. My cycles were normal for a while, but became more and more sporadic over the next few years. I eventually had my hormone levels tested, which showed Idiopathic Hypothalamic Amenorrhea (HA). My estrogen and progesterone levels were pretty much non-existent due to no stimulation to the ovaries. (Of note: I was at what would be termed a healthyweight, eating a wide variety of food with very flexible eating patterns – no issues with body image or food to speak of.)

In hindsight
I really do wonder what would have happened if my body would have been trusted to figure menstruation out on its own. I’ve refused to use birth control since then (other than in between infertility treatments that came later, which was standard protocol) especially since it mimics HA so closely. It never made sense why I would choose to (or be recommended to) regulate cycles in a way that further encouraged (caused?) my issues. Instead, I chose to do hormone cycling – taking estrogen 3 weeks out of the month + progesterone 1 week (of those 3) and then no hormones for the last week (when I would then menstruate). The pro for doing this is that I keep hormones within normal levels for healthy bones and organs. The downside is that it creates a negative feedback loop – why would my body make hormones that I am already taking?  

Next up: Fertility & family planning. 

If you have a story to share or questions you want to ask, but don’t know where to direct them, let’s talk.

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