My Struggle with Undiagnosed Endometriosis
I was rushed to the ER early one Tuesday morning a few weeks ago. For the last several years, I lived with terrible pain, right around the site of my c-section incision. I spent years visiting with doctors trying to figure out what was wrong. Those conversations often felt scripted, gave vague direction, and at times I felt like maybe they didn’t understand how debilitating my pain had become. It took a trip to the ER to finally learn that I have secondary endometriosis caused by a c-section, an extremely rare side effect of uteral surgery, affecting up to only 1.7% of women who have had a c-section.
In 2007, Maddie was born via c-section. We discovered she was breached, with no chance of being turned around a few days before my due date. Obviously, it wasn’t my first choice, but it was the only way to deliver her safely. My pregnancy with Maddie was great, and my recovery, at least physically, went smoothly. I was in no pain and bounced back faster than I expected. One day, in the shower, a few months after she was born, I noticed a small, painless lump to the left of my incision scar. Like all modern-day women who discover a lump anywhere close to her lady parts, I immediately went to my doctor. He told me it was probably scar tissue, but still sent me to get an ultrasound.
To my relief, the ultrasound eliminated the possibility of a cyst or a tumor. Again, I heard “scar tissue.” In my next conversation with my OB/GYN, we discussed ways to have it removed. Since I hoped to get pregnant again soon, the advice was to hold off until I had my next baby, then I’d have another C-section, and they would clean it up at that time.
Ava was born three years after Maddie. My pregnancy with her was difficult. As planned, during her C-section, the doctor looked for the scar tissue but said he didn’t see any. When you’re giving birth on an operating table with your insides outside your body, there’s no real room for arguing, so I figured he knew better than me. My recovery was long and terrible. They couldn’t get the right drug cocktail for me, so after my spinal block wore off, I felt everything. My nurse at the time asked me to describe the pain. I told her it felt like my stomach was cut open by a hot knife, and they removed a person. It took almost a year to recover from Ava’s delivery fully, and my body was a mess.
Around the time Ava turned one, the lump to the left of my scar came back and so began a frustrating and fruitless cycle of going back and forth to different doctors. Because it didn’t hurt, and we knew it wasn’t a tumor, I let it go for a while. Frustrated only by the fact that the more healthy and fit I became, the more prominent was the lump.
Then, about three years ago, it became painful. At first, it was like this shooting, burning pain that would be gone as fast as it came, uncomfortable enough for me to notice but nothing too bad. I think because we’re taught from day one that being a woman comes with some inherent pain, I didn’t pay that much attention. I had a few friends with older kids, who also had c-sections, and they spoke of pain some 15 years later, so I figured this just came with the territory.
Eventually, the pain became more severe for long bouts of time; it was the kind of pain that almost knocks you over. I’d have to hold onto something and wait for it to pass. I’d be in dressing rooms with clients and would have to stop. I was once giving a keynote in Boston and thought I was going to black out from it. Back to the doctor I went for more talk of scar tissue; they thought maybe I had adhesions, but we won’t know unless we go in and see.
At this point, I was 35, and Bri and I had always wanted three kids. We knew this was our last chance to get pregnant before Bri turned 40, so once again, on the recommendation of my doctor, I was told to keep managing my pain with Ibuprofen and figure out if we wanted to have one more baby. Again, with another C-section, they could see what was going on and, finally, clean it all up. We spent the next six months considering if we had capacity in our already-crazy life to responsibly expand our family. Then the summer of 2016 happened, which, without getting into too much detail, was a total disaster that ended up with my business in flux and a lot of personal drama. The possibility of taking time away from the business to have a baby slipped out from under me. I’m still sad about it, but I have two incredible girls; I have no right to ask for more.
During that time, while managing my pain with Advil, I’d have several days of pain and several days without. If I worked out hard, it would hurt more. Other than that, there was no rhyme or reason for the pain. The pain didn’t coincide with my cycle, but it was getting more intense, for long stretches of time, often leaving me in bed for days in excruciating pain.
Last fall, the pain became chronic. If you’ve ever experienced chronic pain, you know you almost forget what it’s like to be pain-free. I don’t want to say you get used to it because you’re desperately hurting, but you come to expect it; you have a new normal. By now, we knew this wasn’t just scar tissue nor was it adhesions; now we think I have a hernia, and I’m going to need surgery that requires six weeks of recovery.
This is where my logic and actions make no sense whatsoever. Did I get surgery? No, Did I look into surgery? Also, no. I just ignored it. I’m in blinding pain everyday, I’m taking the maximum daily dosage of Advil to get through, which is barely making a difference, and I’m walking around wearing a hernia binder (like a corset to keep the hernia “in”) as if everything is fine, but inside, I’m dying. I worked, I exercised, I opened the studio, I flew around the country for work, I went to Europe for two weeks and, at one point, I was in so much pain on our vacation that I thought I was going to end up in a Croatian hospital. Just let me get home and not ruin our trip, I’d say to God, who I have daily, sometimes hourly, conversations with.
What was I thinking?
I didn’t have six weeks on my calendar to set aside time to recover.I had a flight scheduled every few weeks; I was the only one left in the business. I was managing private clients and our corporate clients. I was setting up the store, taking care of the kids, and planning Bri’s birthday; we had a huge trip planned and paid for. It was a mess. If I didn’t work, I wouldn’t get paid, plain and simple. Maybe, I thought, if I ignored it, it would go away. I made my health an inconvenience, not a priority.
Stupid? Yes. So incredibly stupid.
And all too common for so many women.
Everything came to a halt last month. I woke up and felt like my insides were on fire. Imagine 10,000 open blisters, all irritated, burning and stinging your insides at once, thats what it felt like. I have a remarkable tolerance for pain. You could cut my limbs off, and I would throw a band-aid on until I found time to deal with it, but my gig was up. Breathless and sobbing, I glanced down at the lump and saw my entire scar was black and blue. Convinced my hernia had become strangled, my husband drove me right to the ER, where the doctor thought the same thing. We’ll have to call the surgeon, she said; in the meantime, I’d have to get a CT scan, to better understand the severity.
My nurse and doctor were incredible. They quickly gave me morphine which didn’t ease the pain but made me feel groovy enough to ask if Bri could run to Starbucks to get me a latte. This is what I asked my nurse hours before the emergency surgery that was going to require me to cancel my booked September, losing a months worth of revenue. I also asked if there was WiFi. While they were amused, they said no, and the reality of what was happening started to set in. “Look what you got yourself into now, Reilly,” I thought to myself.
I always refer to myself by my maiden name when having an internal dialog.
With that, I started my daily bartering with God. He is likely exhausted by me, but I had to ask him, what do I need to do to get out of this? Anything, I would do anything, I promised.
An hour after my CT scan, I was coming to terms with my reality and started to write mental emails to clients, canceling events, apologizing for basically being a jackass who didn’t listen to her body. And then the doctor bounced in, exclaiming “great” news. You don’t have a hernia! You’re not going into surgery! You have secondary endometriosis. It’s all over you ovary! I’ve never seen so much of it! This was supposed to make me feel better, and it did. Not needing surgery was the best possible outcome. I dodged a bullet. But how in the world did I have endometriosis?
Endometriosis, as I understood it, is a painful condition, when tissue similar to the endometrium (the lining of the uterus) is found outside the uterus in other parts of the body. It causes terrible cramping, long and heavy periods, painful sex, and possibly infertility. I knew a few girls in high school and college who dealt with it; some were able to manage it with birth control, others suffered no matter what they tried.
So I was stunned with the diagnosis since I had never experienced a single symptom. Turns out what I have is secondary endometriosis, which is when the uterine tissue attaches and grows on the C-section scar. Because mine went undiagnosed for so long, it also grew on my ovaries. The nerve damage is severe. I’m currently weighing my options for surgery. At least, now, I know I’m not doing irreversible damage to my body, which I was pretty sure of all this year. I’ve been given the gift of time to research my options.
Between 0.03 and 1.7 percent of women report endometriosis symptoms after a cesarean delivery. Because it’s so rare, doctors often overlook it as a potential diagnosis, but still, there are 1.2 million cesarian deliveries every year in the US. I think more women are experiencing symptoms and just dealing with the pain.
I had left the hospital with a prescription for a lidocaine patch, an appointment with my GYN, and I was relieved to have an answer finally. Within a day, I had a new low-dose estrogen birth control pill that has helped the pain go away completely. It’s been three weeks of no pain, and I’m like a new person.
With a new sense of clarity, thanks to being pain-free and getting some much-needed sleep (I hadn’t slept in months due to pain). I see the foolishness of my decision to blatantly ignore my health. Nothing is worth more than your health, but that’s easier said than done. I’m one of the lucky ones; I have health insurance, a helpful spouse, and a community of friends and family who would drop everything to help me. Still, I didn’t think I could step away.
Collectively, we have to do a better job sharing our stories and encouraging one another to take care of ourselves. We need to stay on top of our health, whether it’s getting our regular mammograms, having a mole checked out, or making sure we get our annual pap smears. I was persistent to a degree, but when faced with something potentially more severe, I just ignored it hoping it would go away.
If you have been waiting to take care of a health issue, if you have that little voice in your head that’s whispering to have something check, please call your doctor. If you think maybe now is the time to start eating better, move more, cut out soda, stop smoking, do it now. When I was laying in that hospital bed, I was overwhelmed with guilt for not taking care of this sooner. I knew better; I have resources, I have no excuses. Sometimes we do things even though we know better only to wish we could take it back when it’s too late.