Stage four endometriosis forced me to learn to take care of myself

That tricky disease that doctors can’t explain. The “retrograde menstruation” that affects one in ten women. The incurable illness that often takes years of pain and infertility to properly diagnose. Endometriosis.

What Dr. Christiane Northrup has called “our bodies’ effort to recall us to our feminine nature, our need for self-nurturance, and our connection with other women.” What one Jungian analyst has called “a blood sacrifice to the Goddess.” What Caroline Myss has called a disease of competition that manifests when a woman’s emotional needs are competing with her functioning in her outer world. Medically speaking, endometriosis is when uterine lining grows outside of the uterus and onto other organs, usually on your ovaries, fallopian tubes, and pelvic tissue. This chronic condition results in debilitating pain.

I was “lucky” in that I received my diagnosis fairly quickly. I started having pain in September, saw a doctor in October, was referred to a specialist in April, had an MRI in May, and then it was confirmed: stage four endometriosis, the most severe type.

It all started when I felt just a slight backache, then full-on debilitating pain down my entire lower half, often leaving me with sleepless nights and not enough pain relievers in the world to even take the edge off. All the while, I navigated my normally irregular and emotional menstrual cycles.

I was in my early twenties and had never heard of endometriosis; I was a fairly healthy person overall. I remember the word “cancer” even being tossed around during my first appointments. Bloodwork was done.

My doctor gave me three options:

1. I could take a drug called Lupron for three to six months to stop the cyst growing on my ovary (Lupron is a drug that shuts down your pituitary glands, stopping all your hormones and virtually putting you into temporary menopause).

2. I could have it removed surgically (which wouldn’t guarantee it won’t immediately grow back).

3. I could wait and see if it was the type of cyst that will go away on its own.

This was when I realized that doctors don’t know everything. I told him I’d think about it. I did my own research. I read books and articles by Christiane Northrup, Louise Hay, and Caroline Myss.

The more I learned, the more it felt like I was peeling back layers and layers of myself. My previously unmarred health felt a world away. Suddenly, my body felt complex and fragile and scary. Suddenly, I realized that I was the only one in charge of it.

Suddenly, I realized that this was the only body I was going to get, and it was up to me to take care of it.

I began seeing an acupuncturist who specialized in women’s health and received treatments every single week for a solid three months. She encouraged me to try cutting gluten and dairy out of my diet and to try daily castor oil packs. I saw a naturopath who prescribed things like more exercise, less sugar, and meditation.

I decided that, once a month, when my period arrived and wreaked havoc inside my poor ovaries, I’d take a day off of work. Every single month, no question, without guilt. I put everything else on hold, and jokingly referred to it as Project Period. I’d write in my journal, drink tea, and do the bare minimum.

And within a couple of months, the pain was gone.

I wasn’t curing the endometriosis, but I was managing the pain in a way that felt like I could exist in the world like a normal human being again. Revolutionary.

But the thing with endometriosis is that there’s no quick fix. There’s no one treatment that’s proven to work. Women can have an entire hysterectomy and still have endometriosis. This meant that I actually had to face endometriosis head-on, consider all my options, decide which ones felt right, and explore what this diagnosis meant to me.

The pain eventually returned, and I did end up having a surgery to remove a whole mess of endometriomas, fibroids, and cysts from my ovaries, followed by three grueling months of Lupron.

And still, the endometriosis carried on.

But I’d never cared for myself in this way before. I’d never had a reason to, I guess. I’d always been relatively healthy, skating my way through my twenties, until suddenly I had this serious illness affecting my daily life, forcing me to take exquisite care of myself.

So this became the biggest question of my twenties: How do I take care of myself?

This literal quest to heal my body started with an acute awareness of physiological needs I’d never consciously considered before: Was I tired? Did I need to go to bed early? Was I drinking enough water? Did I need to bring a sweater? Was I eating in a way that felt good to my body?

And this quickly transformed into an inquiry into my deeper needs: How do I speak up for myself? What are my values? Can I say no? Do I feel safe? How can I create more connection in my life?

I’d quite literally gone from a relatively non-self-aware college grad to someone looking closely at what it means to be alive. I became someone who honed in on their needs and desires, who said no and hurt a lot of people’s feelings, who existed on an entirely new plane of existence.

This was my twenties. I’m 30 now, and the ways that I learned to care for myself back then have evolved into being almost second nature to me. I’m not sure where I’d be if I didn’t practice this kind of responsibility. Perhaps I would have learned anyway (isn’t self-introspection what twenties are all about?) —  but this was like a super fast-track method for growing up.

I’m certainly not ready to say that that I’m glad I was diagnosed with endometriosis, but in many ways, I’m grateful for all it’s taught me. So thank you, endometriosis.

Filed Under