Note: I started writing about my endometriosis journey in this piece, which describes my diagnosis and laparoscopic surgery. That post serves as a “Part 1” to this one, so I recommend checking that out first! Also, my writing is not intended to serve as medical advice in any way – I’m just using this platform to share my story.
Two years ago, I was being wheeled into the operating room. Goosebumps lined my arms and I shivered, even though the nurses piled blankets on top of me. While I was afraid of the pain and nausea that would greet me when I woke up from surgery, I believed that I would finally be fixed: the surgeons would remove the endometriosis growing inside of me, and I would finally have “normal” periods. I wouldn’t have to think about this problem again.
I wish that were the case.
Instead, I learned that endometriosis is a chronic condition. Tissue that mimics the endometrium (the lining of the uterus which usually sheds during menstruation) continues to grow in parts of the body it doesn’t belong in, invading the uterus, pelvic cavity, bladder, kidneys, ovaries, and other distant organs. This “endometrial-like” tissue is unable to shed during menstruation, and if not removed, it hardens and becomes scar tissue – which not only causes debilitating pain and other symptoms, but also leads to organs in the pelvic cavity fusing together.
Getting periods only leads to endometriosis worsening, and because the disease has no cure, the path forward involves having repeated excision surgeries (where the tissue is removed) and reducing the number of menstrual cycles (or what I like to call “stopping the flow”).
That’s the state I’m in now – learning to live with endometriosis and managing the disease progression.
What Happens After Surgery?
Two weeks after my excision surgery in August 2023, I was prescribed birth control. It was a progestin-only pill (progestin is a synthetic form of progesterone, an endogenous hormone produced by the ovaries which regulates menstrual cycles and maintains pregnancy). The goal of taking progestin is to 1) stop menstruation and 2) counteract the effects of estrogen, the hormone that supports puberty and sexual development, bone health, thickening of the endometrium, and other functions. However, estrogen also fuels the progression of endometriosis by facilitating the growth and survival of endometrial-like tissue outside the uterus, which is why endometriosis is often called an estrogen-dependent disease.
While I’m not a fan of the idea of being on birth control indefinitely, it’s one way to slow the rate of progression of the disease (post-surgery) and reduce symptoms. A week after starting this first medication, I began to have some unpleasant side effects. So, a few months later, I switched to a combination pill that contained both progestin and estrogen. With endometriosis, the goal is to prevent periods; thus, I was prescribed a “continuous” dose, where I would take the medication for some time and then take a break for a few days to get a period, preventing excess buildup of the endometrium.
I’m writing all this because figuring out birth control is a journey in itself, especially when there’s various synthetic versions of progesterone and estrogen. Thus, finding the right birth control is trial and error. Yet, the second pill seemed to do the trick, and by mid 2024, I believed my endometriosis was better under control, and my cycle no longer stole several days from every month.
Ups & Downs
At this point, my main flare-ups occurred when I took a break from the birth control pill. I would have bad cramps, get bloated and be unable to eat much for a few days, but the amount of bleeding, pain and extent of my symptoms was less than what it was pre-surgery. To me, this was a win.
Fast forward to early 2025, this second medication seemed to stop working, and I had symptoms while taking it. This culminated in a very miserable flare-up, and, long story short, I was cooped up in my dorm room for a week. Eventually, I was placed on another combination pill – the one I’m on today.
Living with endometriosis has been like troubleshooting a lab experiment; the first thing we try seldom works. Except with endometriosis, a medication not working or getting a flare-up is more frustrating (and demoralizing). When having symptoms, I can’t be very productive or pursue what I’m passionate about, and I would feel upset about this. Physical health heavily affects mental health, so whatever I could do to boost my mental health – whether that’s watching funny videos, reading, or talking to those around me – makes dealing with the symptoms a little easier and helps time pass.
The Future
My future with endometriosis is filled with unknowns. I’ll be on hormone medication for a long time, and will likely have another excision surgery in the next couple of years to see how much the disease is progressing. There’s no “magic cure” for the disease (yet), and researchers are still investigating the causes of endometriosis.
Seeing all the endometriosis stories online – and the increased awareness within the last few years through organizations such as EndoFound – has made the journey feel less isolating. Offline, the most important thing we could do to support those with endometriosis is to listen without judgement. We may not fully understand around the pain, or the ins and outs of the illness, but being there and checking in is the difference between feeling alone and feeling understood. For now, I hope that open conversations about women’s health – including the messy and misunderstood parts – become the norm.
