What endometriosis has taken from me
What endometriosis has taken from me… and all the things I refuse to give it.
Exclusive | Brooklyn | Endometriosis Action Month
Long before I knew what endometriosis was, it had already taken from me. Weeks and months from school or work, social plans with friends and holidays with my family that were instead spent on my couch, suffering from intense pain, with a hot water bottle squeezed between my legs.
On my wedding day, I stood at the altar, cramping and checking the back of my dress for blood, wishing I’d chosen a different day.
Endometriosis (or “endo” for short) is an incurable condition in which cells similar to, but not the same as the tissue that lines the inside of the uterus grow outside it. Symptoms include painful periods, pain in the pelvis, back, legs and during sex, irregular bleeding, painful urination and bowel movements, fatigue, infertility, nausea, bloating and much more. This inflammatory disease is estimated to impact 1 in 10 reproductive aged women and those assigned female at birth.
And yet, endometriosis often goes undiagnosed, misdiagnosed or dismissed by GPs and specialists. This goes some way to explaining why it takes the average sufferer eight years to get diagnosed in the UK, and heading towards 12 years in the USA - shocking statistics for a condition described by the NHS to be one of the top 20 most painful.
Struggle
From the time I got my first period at 13 until I was 29, I experienced painful periods characterised by heavy bleeding, fainting, vomiting cramps that would leave me breathless.
At 16, an OBGYN removed my appendix, wrongly insisting it was the source of my pain. Afterwards, I was routinely told by doctors that it was ‘normal’ to have heavy periods - is isn’t - and to suffer from cysts on my ovaries the size of golf balls. When I was 20, an emergency room doctor questioned my intentions. Was I really in pain or was I seeking opiates? ‘I want you to fix me,’ I said, through tears.
The only relief vaguely occurred when I started following a gluten-free diet and intermittently when I went on birth control, though that came with other side effects. I was finally diagnosed with endometriosis when my husband Andy and I started trying to conceive. Like so many others suffering from endo, by the time I had found out what it was, it had taken away my fertility.
In May of 2021, six months after I had the excision surgery that officially diagnosed me with this relentless disease, Andy and I found out we’d exhausted our chances of conceiving naturally. The only way it would happen for us was via IVF, a costly process without guarantees - and one that was not covered by our health insurance. We were heartbroken, trying to figure out if we could stomach the $20,000+ bill for one cycle of IVF, knowing we might be left with nothing in the end. We sat at our kitchen table and made the decision to take a break from everything.
Heartbreak
That night, I went on a run to clear my head. I ended up at the water near our neighbourhood in Brooklyn, New York, overlooking the Manhattan skyline. Out of breath from over exertion, I stood there for a long time and cried. This awful disease had taken so much from me already and now it was robbing my chances of becoming a mother.
During our break, I decided to focus on healing my body and mind. Endometriosis and infertility had taken a toll on my mental health and running had always been something I could lean on to get me through hard times. I signed up to run a marathon in January 2022 and began training.
Endometriosis took a lot from my training. Long runs had to be moved to accommodate the reality of two days of excruciating pain when I got my period each month. Still, I continued.
Training helped me process a lot of heartbreak and reminded me how strong I was. I adopted the mantra ‘I can do hard things’, and would say it over and over again whenever I wanted to stop. I found myself saying it on days when I couldn’t move too.
The actual marathon was grueling. Andy followed me along the course with a backpack filled with supplies to keep me going. At around mile six, I started having intense cramping in my uterus. I had to slow down and started crying, knowing if it didn’t subside, my marathon was going to be over.
When I met Andy at mile nine, he looked at me with wide eyes, later telling me he was scared by how pale my face was. I took a bottle of CBD and a gluten-free snack from the backpack, telling him that if it didn’t get better, I would stop after I got halfway.
Determined
But I repeated my mantra to myself. You can do hard things. You can do hard things.
Thanks to the CBD and the extra carbs, a mile later my cramps began to subside. When I reached the halfway point, a woman who’d seen me crying earlier asked how I was feeling.
With the reality of 13.1 more miles still looming ahead, I said, ‘this sucks.’ She laughed and agreed. I added, ‘but we can do hard things, right?’
Once I got halfway, I pushed myself mile by mile to continue. It wasn’t until I reached mile 26 with only 0.2 left to go that I knew I’d be crossing the finish line. I finished the marathon crying tears of joy that endo hadn’t taken that moment from me.
As I write this, I am a few weeks away from starting my first round of IVF. While I was marathon training, Andy and I were very fortunate to get new jobs with better insurance that will cover the behemoth costs of IVF. I don’t know if endo will give or take from me on this part of my journey, but I do know that I won’t let it take away my ability to do hard things.
For information and support with endometriosis in the UK, visit Endometriosis UK. Readers in the USA can visit The Endometriosis Foundation of America for regional info and resources.
Like this article? Please help us commission more like it by donating the cost of a cuppa on Ko-fi. Sharing this article on your social media, and following us on Instagram, Facebook, and Twitter are also a great way to support our independent, self-funded platform.
We encourage debate, but trolls are not welcome. Please read our comments policy before contributing.