The Progression of My Symptoms
Last updated: March 2023
Although we understand more about endometriosis all the time, there is still a high rate of underdiagnosis, and doctors do not catch symptoms early enough.
My symptoms began at 11, a year after menstruation started. The following year, in seventh grade, my flow became heavy, and I developed painful cramps. I vividly remember one day when I had to hug the walls at school while walking between classes and nearly had to sit down because my cramps were so intense.
Another day that same year, I started one of my periods with such a strong flow that I bled through my pants onto my chair.
No one, not my mom, the school nurse, or the gynecologist, thought anything of it. Even though I used a lot of NSAIDs each month, no one flagged it for anything but a typical period.
Pain in my 20's
In my early 20s, while on birth control for its intended purpose, my gynecologist switched me to a different brand to see if it would help with my cramps. It didn’t, so she suggested I take prescription-level NSAIDS a few days before the first day of my cycle to “get ahead of the pain.” I did that for quite a while.
Later, I developed heart palpitations that no one could figure out. I did a stress test and wore a heart monitor for a week, and ultimately the doctors shrugged their shoulders and said I was fine. I went off of birth control after a breakup and soon after stopped having heart issues.
To this day, whenever I try any kind of hormonal medication, the heart palpitations return within a few days, and I have stopped seeing them as an option in my care.
During my 20s, I tried many things to stop my pain, from yoga to acupuncture to a gluten-and-dairy-free diet. Nothing worked for long. No one ever mentioned endometriosis.
During my mid-to-late twenties, I started missing multiple days of work each time I had my period. Holding down jobs that required 40 hours a week became challenging because I knew I’d have to miss work each month.
I missed out on camping trips, family gatherings, and time with my partner, and I spent many days in bed. This continued, and no one ever told me I should see a doctor.
Everyone, including myself, assumed that this was relatively normal. Now I know better!
New pain in my 30's
In my early 30s, I developed a pain in the left side of my pelvis that became persistent. At first, I could manage it, but I started changing how I dressed because of it, favoring skirts that sat at my natural waistline and elastic-waisted pants because anything else put too much pressure on my pelvis.
I started adjusting the seat belt while I drove, sometimes putting my hand between the seat belt and my pelvis because it hurt too much. I didn’t go to the doctor sooner to get it checked out because I was afraid it was cancer, and I was also afraid of surgery.
Eventually, I couldn’t ignore it. I saw a gynecologist who was new to me, and I went alone. I regret that now; it was a traumatic experience.
The doctor had a terrible bedside manner and freaked me out completely. She wasn’t gentle with the pelvic ultrasound and then told me I had a large ovarian cyst that had to come out right away.
She scheduled me for ablation surgery. I didn’t know anything about ovarian cysts or endometriosis then, and I scheduled the surgery as she asked.
The next week I had surgery, and recovery took about two weeks. It felt like a miracle to wake up and have the pelvic pain gone.
But within a month, it was back. I couldn’t believe it. I went to a second gynecologist to get another opinion, and she recommended the same thing. Six months after my first surgery I had another, also an ablation. She wanted to put me on birth control pills. I explained my heart issues, and she wasn’t concerned, so I tried it. I got off of it two days later after experiencing scary heart palpitations.
Getting surgery for my endometriosis
For the next ten years, I tried many alternative health approaches, including nutrition changes, functional medicine, naturopathy, energy work, and dream work. For most of that time, I was pain-free.
Then in 2018, the issues arose again, with pelvic pain, heavy periods, bloating, stomach pain, and sciatica. At the end of 2019, an ovarian cyst ruptured, likely an endometrioma, and the excruciating pain sent me to the ER.
I found an incredible surgeon, and in 2020 I had excision surgery for stage 4 endo with rectal involvement. Recovery took me about six weeks.
Only six months after that surgery, I had another ruptured cyst, and not long after that, I rapidly lost my mobility because of intense sciatic pain and heel and ankle pain on my left side. My surgeon referred me to a Boston surgeon who discovered endo near my sacral nerve during my fourth surgery.
I’m about two years out from that last excision surgery, and I haven’t had a recurrence like the ones I experienced before. I no longer have my ovaries, and I think that’s made a tremendous difference for me since most of my pain stemmed from recurring endometriomas.
While I have occasional pelvic and hip pain, lingering sciatic pain, bloating in my stomach, and nerve issues in my leg, I think being in menopause and having expert surgery helped me gain a significant quality of life back. Sometimes I forget what it was like to be in such intense, constant pain and discomfort, and I feel lucky.
I wish it hadn’t taken so long for me to get a diagnosis and support; my endo might not have progressed to the level that it did. I’m grateful that I did finally get the right help, and I can manage the disease much more easily now.
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