Ready or Not, Here Comes Endometriosis

I remember getting into the passenger seat of my parent’s SUV, popping in the cassette tape, and staring out the window as my mom drove me home from my first gynecological appointment. I was 15. The tape was playing a woman’s voice explaining birth control - what it was for, what it was not for, and how to use it. I was embarrassed that I was listening to this with my mom in the car. I wasn’t ready for birth control yet (wasn’t ready for a lot that endometriosis had in store for me), but it was my doctor’s first plan of action to address my two-week long periods and the cramps that made me convinced a monster was growing inside of me. Like many others, it took me a while to go to the doctor about my symptoms.

I didn't know that I needed help

Even though most women with endometriosis report experiencing symptoms in early adolescence, delayed diagnosis is common.¹ Girls are taught from an early age that periods are awful, shameful, painful, etc.,² so I figured that’s what this was, my period. It was horrible, but it was supposed to be horrible, so I pushed through it, wondering why I was so much weaker than everyone else seemed to be. I felt like I was the only one who couldn’t go on with life as usual during my period. Of course, instead of thinking there might be a medical issue, I assumed I just wasn’t as strong as other women. Thanks to a failing sex education system and the culture of shame surrounding menstruation, I knew little about my body and was reluctant to ask for help... Until it became unbearable.

My marching orders

So, I did what the doctor said. I started birth control. Anyone who knows me knows that I like to follow rules, so I took it diligently, but did not get the anticipated results. I still had heavy and prolonged bleeding, persistent cramps, and just felt like I couldn’t function in many aspects of life. Back to the doctor I went. An ultrasound revealed I had a large cyst on my ovary and my doctor suspected I might have endometriosis as well, so surgery was recommended. Surgery was the only way to remove the cyst and diagnose the endometriosis. I wasn’t ready for surgery, or for the news that followed.

"Something that happens to older women"

During my laparoscopy, my doctor was able to remove the cyst, confirm that I had endometriosis, and treat some of the lesions. She also started me on a medication for which the side effects mimicked menopause. My diagnosis was presented to me as something that was unusual, something that usually only happens to women in their 40s or older. Of course, this is not necessarily true given that 10-15% of women of reproductive age are affected by endometriosis.³ She explained that the longer I waited to have kids, the harder it would be. Reminder: I was 15. I wasn’t ready to hear that.

Devastation

There I was, an adolescent wondering why my body was acting so much older than it was supposed to be. I didn’t know anyone who had it, and I was too ashamed to talk about it with anyone. What did this diagnosis mean for me and my future? And seriously? I might not be able to have kids? I loved kids so much. In fact, when I was a kid, I couldn’t wait until I turned 12 because then I could babysit. I made my own business cards and went door to door in my neighborhood passing them out. I had a babysitting back pack (it was purple and pink with yellow zippers) that I filled with books, bubbles, and crafts. At the age of 15, I was devastated to think I might not be able to have kids of my own one day.

Consumed by anger

So, I did what teenagers can be good at – I became angry. It didn’t help that I was experiencing the hormonal changes from the medication and having random “hot flashes”. I coped with my pain in some maladaptive ways. I made many bad choices without caring about the outcomes. I shut people out, told them they couldn’t understand so don’t even try, and I felt sorry for myself. And as far as my future fertility was concerned, I convinced myself that I now hated kids, so it was good that I might not be able to have them anyway. Of course, that wasn’t how I actually felt.

Endometriosis definitely complicated my adolescence. I had another surgery at age 17 (and that would not be the last) because the symptoms had not improved from the first surgery and medication. During the second surgery, my doctor cut a nerve to reduce the pain I was having. That did seem to help some of the pain, but part of me wondered, if I can’t feel the pain, and the condition can only be evaluated through surgery, how was I supposed to know if it was getting better or worse?

What could have helped?

My experiences have me wondering what could have helped me cope better with this illness I was not ready for. I think the answer lies in increasing knowledge and decreasing stigma.

First, girls need to be empowered with accurate information about the menstrual cycle, so that they can have a sense of what is normal and what to report to a doctor. The menstrual cycle is a vital sign for girls and adolescents, and it should be treated as such.⁴

Second, opening up more opportunities for positive conversations about menstruation can help combat the shame associated with menstruation in our culture. Fortunately, there have been some critical research and activism efforts to move us in this direction (e.g., The Society for Menstrual Cycle Research; #periodpositive; Period: The Menstrual Movement).

Lack of knowledge, shame, and the negative discourse surrounding menstruation prevents girls and women from seeking help for their symptoms. During this time, endometriosis can progress and cause further harm to one’s reproductive well-being.

Now, I'm ready

My goal now is to keep this all in mind as I talk to my children about menstruation. I wasn’t ready to talk about it when I was 15, but I’m ready to talk about it now. I look forward to sharing more of my journey with you in future posts.