I am 26 and I have endometriosis.

EDITED TO ADD:
An update to this post, from 2019, is available here.

{In early 2012 I was diagnosed with stage four endometriosis. Not one to take any medical intervention lightly, I began doing research. What I found on the internet was disheartening, unhelpful, and downright disturbing. I soon realized there were virtually no positive, hopeful, or encouraging stories from women who had suffered from endometriosis or from doctors who had treated them. And so I stopped reading altogether. I began my own journey of healing and  now, over two years later, am ready to share my own story, in the hopes that other women who are diagnosed with this largely unexplained disease can take comfort and hope from my words.}

 *Disclaimer: Every person’s body is different. This is the story of my own experience, and yours may look very different. This is how I’ve chosen to approach my diagnosis, but it is certainly not the only way. Please remember that ultimately, you are the only one who gets to choose for you. My hope is that this story might be used for inspiration, not advice.

I am 26 and I have endometriosis. 

If my seven-year-old, baby-loving self knew what that was and what that meant, she might give up altogether.

Nineteen years later and I’m looking at my second surgery in ten months – this time to remove my right ovary completely.

If my ten-months-ago self knew that would happen, she might give up altogether.

It was two and a half years ago when I first started seeing symptoms, although I would later learn the endometriosis had most likely begun close to ten years before. First there was just a little bit of a 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 navigating my normally irregular and emotional menstrual cycles.

I missed days of work. I often slept two hours per night, at best. Three weeks out of the month, I’d be a miserable wreck.

That one week felt like heaven. 

It felt like a kidney infection, at first. A UTI, worsened. (When endometriosis affects your reproductive organs, it can hit nerves that hurt other areas of your body.) My doctor had me pee in a cup and told me it was probably just muscular, that I should do nothing more than take ibuprofen every four to six hours for a week straight.

This was the first time I realized doctors don’t know everything. 

After a few more weeks of lower back pain, I went back and she recommended an ultrasound. That was "inconclusive," so she recommended an MRI.

The word cancer was tossed around. Blood work was done.

Something was found. She could barely tell me what, but she suggested endometriosis. I’d heard little of this term, but knew it had to do with reproduction.

I immediately went home and researched it. The majority of the Google links led me to fertility and motherhood sites – articles from women who were trying to get pregnant but couldn’t. The rest led me to horror stories of multiple surgeries, infertility, total hysterectomies, and early menopause.

I was terrified. I made an appointment with a gynecologist right away. It was spring, 2012.

He was friendly. Nice, even. He sent me for yet another ultrasound and confirmed what I’d been fearing: there was a large mass on my right ovary and it needed to be treated, soon. 

As I absorbed this shock sitting in his office on crinkly paper with nothing but a flimsy sheet covering my bare nether regions, he told me I had three options:

1. I could take a drug called Lupron for three to six months to stop the growth (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 doesn’t guarantee it won’t immediately grow back), or

3. I could wait and see if it’s a type of cyst that goes away on its own.

This was the second time I realized doctors don’t know everything.

I didn’t like any of these options. Not one. I reluctantly told him I’d think about it all and let him know. On my way home, I stopped at the library and immediately checked out Dr. Christiane Northrup’s book Women’s Bodies, Women’s Wisdom. I was reading the section on endometriosis before I even left the parking lot.

That was when I confirmed what I thought was true: there are plenty of other options. Take that, Mr. Gynecologist. (Relatedly: why are so many gynecologists male?)

I almost immediately made changes.

I stopped eating gluten.

I stopped eating dairy.

I found an acupuncturist who specialized in women’s health.

I went to see a naturopathic doctor who prescribed things like more exercise, less sugar, and meditation.

I started doing castor oil packs daily.

Things were looking good. After a few cycles, I was almost completely pain-free. It felt like a miracle. A whole spring, summer, and fall went by with no debilitating pain or sleepless nights. I was elated, and hoped that the lack of pain translated into lack of endometriosis.

I suppose one could call that a success.

Until the pain came back in the fall of 2012. Slowly at first, just enough to let me look the other way and brush it off. But soon it was back in full force. More sleepless nights than I knew what to do with. (As it turns out, the extent of endometriosis in the body is not necessarily indicative of pain — a pinprick can be debilitating, and large masses can cause zero discomfort.)

I waited a few months until I couldn’t ignore it any longer, and scheduled another ultrasound. My gynecologist referred me to a really great fertility specialist who practically demanded what I’d been fearing: surgery. 

I felt like a failure. Like all the energy and money and emotion I’d put into my health in the last year had been for nothing. 

But I moved forward with it anyways, albeit a little blindly. I believed my doctor when he told me that this was the best thing for my future fertility.

And that was thing – I wanted my fertility, thank you very much. But I wasn’t ready for babies right then. I wasn’t even in a relationship. And so I went to my appointments where there were always two chairs in his office, one for each partner in each couple trying to have a baby, and listened to my chances of ever having children grow seemingly smaller, and smaller, and smaller. By myself.

So when he told me this surgery would be the best thing for my future fertility, I believed him. I had to believe him. Believing him was all I could do. 

Sometimes believing a doctor is all you can do. 

A few weeks later I was out of surgery. Sore and apprehensive and wanting to hurry the healing process. But it was done, and over with, and a 9cm cyst with fibroids and endometriomas was removed from my right ovary.

Phew, right?

Then I learned I’d still need a round of Lupron. Three months’ worth. Here I was thinking it’d be one or the other, surgery or Lupron, and suddenly I was being slammed with both.

But as I wanted to preserve my future fertility, I believed my doctor.

And so my summer of 2013 was spent on Lupron, and I now have tremendous respect and compassion for anyone who endures that drug. It’s what I imagine menopause to be, except compacted and intensified into a short period of time. There’s no gradual loss of estrogen – your pituitary glands cut it off abruptly, just like that. I’d wake up every morning in a sweat. I’d get up multiple times in the night, turning the fan on or off or on again. At times I would feel so uncomfortable even having a short conversation with anyone, as at any given moment I’d feel compelled to rip my clothes off in a feverish sweat.

It was a harsh three months, and not for the faint of heart.

(This all took place as I quit my job, moved to another state, and started a new job in a new city where I barely knew a soul. That summer was rough.)

Post-surgery, I was terrified of the endometriosis returning. Terrified. And it turns out my fears weren't for nothing. 

At my first check-up ultrasound one month into the Lupron, we saw that it was already growing back slightly. At my last check-up ultrasound, it appeared that the Lupron was virtually ineffective – the mass on my right ovary was almost the same size it was pre-surgery. 

He wanted to remove my ovary. I refused with everything I had. I wanted to try three months of a low dose birth control pill first.

So that’s what I did. I didn’t want to avoid the fact that I had endometriosis, but I couldn’t think about losing an entire ovary.

And so I did everything in my power to keep it at bay. I amped up my self-care. This time I was going to get serious.

I discovered community acupuncture in my new city and went every Wednesday night.

I saw a holistic doctor who put me on a whole slew of homeopathic remedies and told me to go see his herbalist.

She gave me a few tinctures and some of the worst tasting herbs I’ve ever had, like motherwort and yarrow and burdock.

I saw an osteopathic doctor for pelvic manipulation once a month.

Suddenly I had hope. I had a kind doctor who sat before me and told me that he had no idea why some people are dealt shitty cards in life, and that my case of endometriosis just plain sucked. I cried when he said that. Of course, of course – this wasn’t my fault. It just plain sucked. And there were people there to help me. 

The surgeon had given me three refills of the Pill instead of two, which felt like a little happy bonus -- another month to avoid calling him. I didn’t even want to know. At that point, I was banking on a miracle. I was almost fully expecting to go into that next ultrasound and have him exclaim, “Impossible! It’s disappeared! You’re fine!”

Needless to say, that didn’t happen. 

The slight back pain I was suddenly feeling with my period on the left side of my lower back prompted a tiny voice inside my heart say, “Don’t avoid this any longer. Do the most loving thing you can do for yourself. Get this checked out.”

And so back I went. Back to that doctor’s office in my home state. I dreaded driving there, I dreaded the sight of it, I dreaded the smell of it, I dreaded everything about it.

But I just had to. I had to know.

And so I sat in that chair in front of his desk yet again, the empty one beside me for my non-existent partner, as I listened to this gentle man who I’d known for almost a year now tell me that not only was my right ovary so overtaken by this endometriosis that it’d need to be removed, but that it had now spread to the left ovary too, significantly. 

I sat in that chair and cried. For what felt like the millionth time.

Hadn’t I done enough? Hadn’t I tried my hardest? Hadn’t I given it everything I could?

Hadn’t I spent an absurd amount of money on this thing? Didn’t I have credit card debt to prove it? Hadn’t I swallowed the foulest of concoctions every day for months? Hadn’t I driven an hour and half to this doctor’s office every month for three months to be stuck with the largest needle I’d ever seen? Hadn’t I read all the books by Louise Hay and Christiane Northrup and Caroline Myss and done all the inner work? Hadn’t I sought out professional help from nine (yes, nine) different people? 

What the fuck was the point?

It sunk in slowly as I drove home. I’d be having another surgery. I’d be losing my right ovary -- gone from my body forever. I’d most likely have to go through another – longer – round of Lupron. I’d have to continue going back for ultrasounds to monitor the left ovary. I could lose that one, too.

And then, the real clincher: My possibilities of ever having children were supposedly getting slimmer and slimmer.

Over the next few days I let myself feel it all. I’ve learned to compartmentalize like I never had before, for the sake of getting through things like waking up in the morning and being at work. I’ve gone through every wave of emotion possible, I think, multiple times. 

And yet – deep down, in my soul, I know that all that wasn’t for nothing. It wasn’t a waste of energy or time or money. 

I hadn’t failed myself.

I followed my intuition. I went with the modalities of healing that resonated most deeply in my soul. I waded through a mysterious illness with care and consciousness. 

And so of course I didn’t fail. And with that bit of truth, I can have just an inkling more trust.

So my point here is this: 

We can do everything in our power to prevent illness, and still find ourselves ill. We can try every remedy on the planet, but ultimately our bodies and spirits have a path to take that we won’t always understand. I think the important part is our relationship with it all.

My doctor told me at that last visit, “Endometriosis isn’t cancer, but it almost may as well be. It behaves just like it, growing and spreading without rhyme or reason.”

Imagine a tumor. Imagine a mass invading your organs and growing recklessly inside of you, harming you and your body. 

Now imagine making friends with that tumor.

That’s sort of how I’ve had to approach this disease, because if I think too hard about the cysts and fibroids and endometriomas growing and expanding into my ovaries and not being able to stop them – well, I freak out.

I’ve had to treat it with love just like my arms and my thighs, my belly and my nose. Love. Because what else is there?

This is where you can transcend all else. This is where you can look at the chronic pain and the multiple surgeries and the crazy drugs and the possible infertility and the thousands of dollars spent

and soften into it all, ever so slightly.

I'm now days away from my second surgery and I'm both devastated and accepting. I won't know how this is affecting my fertility until I try to have children, which isn't quite on my horizon yet. But this body of mine is strong. This body of mine knows what it's doing.

There were a few days where I said "Fuck it" and ate things like bagels and gave up on things like herbs. Until a dear friend asked me one day, "But, how does the left ovary look?" And I cried thinking about my poor, left-behind, remaining ovary. 

It's still there. It still has visible follicles and therefore, potential. If I want any chance of fertility in my future, this one's got it. And so I will do everything in my power to save it. I'm getting strict with my diet, serious about meditation, and committed to castor oil. I'm seeing another specialist for a second opinion just to be sure. And I'm also writing this story, getting a new tattoo, and saying "I love you" in the mirror -- you know, to cover all my bases. 

Because this body of mine is strong. This body of mine knows what it's doing. And this body of mine has a path to take that I don't understand just yet.

And that is okay.

{If you'd like to get in touch about anything I've written here, I would love to hear from you. Don't hesitate to write me.}