My Endo Story Part 1 : Hurting
I went on birth control when I was 17 years old because of painful cramps and because my doctor said the pill would make everything better. The next 10 years proved to be painless and cyclical. Some of the best periods of my life, all while endo was quietly simmering just below the surface, unbeknownst to me. When I was 27 years old, I decided to stop taking birth control because 1) my partner and I were getting closer to wanting to start a family and 2) I wanted to give my body time to re-acclimate after being on the same medication for so many years.
And so I came off, and for one month, nothing changed. What happened next was a slow unfolding of symptoms. First, there was cystic acne. Tons of it. Then, I realized how abnormally long my cycles were. We’re talking 60+ days. Next, there was fatigue. And finally, pain. So much pain. Most people are taught from a young age that getting your period is annoying. That there’ll be general discomfort, mood swings, and cramps. So for a while, I thought this was par for the course.
About one year in, I had my annual physical and brought all of this up with my doctor. She told me that I was probably just anovulatory, and that I should go back on the pill to avoid cramping. She also hinted at infertility, telling me that when the time came for kids, there were other drugs I could take to make it happen.
This felt … counterintuitive, on a very deep and personal level. And so I did what any good millennial should probably not do, and consulted the internet. PCOS was my first guess, endometriosis my second. I started listening to podcasts and in particular, found Jessica Murnane’s show to be both helpful and educational. I learned how difficult it is to get diagnosed with endometriosis, which, by the way, is about 10 years on average. And that technically, doctors don't even know that you have it unless they perform a non-invasive surgery revealing specific endometrial tissue.
Ultimately, I chose to say off the pill, wanting to get to the root cause. And finally, after advocating for myself, was granted an ultrasound wherein they discovered two grapefruit sized cysts, one on each ovary. This was enough for a specialist to officially diagnose me with endo, and a surgery for removal to be scheduled.
In the four(ish) month wait before surgery, my pain got unimaginably worse and occurred more often. At its best, it felt like I ate too much for lunch. At its worst, it felt as though someone had skewered me through the abdomen AND set everything on fire. There were many days when I couldn’t get off the couch. Countless hours spent in fetal position, praying for any hint of relief. And in some of my worst moments, I chose to burn my skin with a heating pad because doing so felt better than endo’s wrath.
There was no pattern to the pain I experienced, which made it difficult to do anything. So I started planning my life around endo, not wanting to be away from home “just in case.” Running my business was hard. Going to the grocery store was hard. Seeing people was hard. Everything was hard.
On top of this, endometriosis is, for the most part, an invisible illness. I could have been more open about what I was going through, but nobody could REALLY tell and I wanted to retain some semblance of normality. So I became a really good actor instead. Because of this, my friends and family truly did not know what I was actually going through. It was the deepest pain and the darkest days of my life, most of which was faced completely alone.*
* Shoutout to my husband, Michael, who has heated up so many corn bags (like a heating pad) when I couldn’t, driven me to the ER and waited in tiny, brightly lit rooms, rubbed my back to soothe + distract, and has literally held me up into some of the weirdest positions when I couldn’t because it gave me a modicum of relief. <3
On the day before surgery, I woke up in an unusual amount of pain. I got myself downstairs and warmed up a heating pad while lying in fetal position on the kitchen floor. I don’t remember getting myself to the couch, but I did. All I could do was breathe. In and out, in and out. And when the pain didn’t subside, I called my parents, as my husband was stranded in an airport because of a blizzard. The second my mom walked through the door, it’s almost as if my body knew that it could let go.
Sheer pain radiated from the center of my body and spread. Panicked, my mom called 911 as I collapsed on the bathroom floor. I would later learn this pain to be an ovarian torsion, which occurs when an ovary twists around the ligaments that hold it in place. And yes, it f*cking hurts. More than you can imagine.
I was taken to the hospital in an ambulance, where I had emergency surgery just a few hours later. They removed one of my cysts that had burst alongside the torsion, but weren’t able to save the ovary and fallopian tube it was attached to. I had another cyst on my right ovary, but there wasn’t enough time to remove it.
Upon waking, I was told that I had “stage four” endometriosis. That it was incurable and that we’d probably never have kids. I’ll never forget my doctor’s face, grim as can be, as he shared this news with me. I was afraid and annoyed and so incredibly frustrated. Which was, as I now know, the beginning of a rebirth.
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The second part of my story is all about healing, which is a lot lighter and brighter. You can find that post right here. <3
PSA. It is estimated that 1 in 10 people born with a uterus have endometriosis, most of whom do not know. Endometriosis occurs when uterus-like tissue grows on the outside of the uterus, typically in the pelvic region (although it can spread beyond). Each month, this tissue thickens and bleeds, but has nowhere to go. This leads to inflammation, cysts, and most commonly, pain. Other common symptoms include leg / hip / back / shoulder pain, pain during or after sex, thick blood clots, painful bowel movements, excessive bleeding, fatigue, diarrhea, bloating, nausea, and infertility, to name a few.
If you suspect that something is going on for you personally, I would suggest doing a little more research (Know Your Endo is a great website) and seeking out an endo specialist in your area, as they are much better equipped to point you in the right direction. I found it helpful to join local endo Facebook groups so that I could ask members which doctors to see.