This Is What Living with Endometriosis Really Looks Like
“The test revealed that both of your fallopian tubes are blocked. Either you had an infection that was never treated or you have endometriosis.” This was the conversation that introduced my disease to me, about two years ago, when my husband and I were trying to have a second child.
While I’d heard of endometriosis before, I had no idea how it was about to impact my life. I’d gone to doctors to try and get pregnant. Instead of two lines on a stick, I received a diagnosis that meant months of excruciating pain and, ultimately, the loss of my fertility and removal of my uterus.
Endometriosis is often referred to as an “invisible illness” because women who have it suffer terribly on the inside but can look fine to the outside world. The disease causes tissue that resembles the uterine lining—the kind that you shed every month during your period—to grow on organs outside of the uterus, causing painful periods, painful sex, painful bowl movements and urination, infertility, extreme fatigue, sciatic nerve pain, excessive bleeding, and G.I. issues. In some cases, it can cause pelvic organs to get stuck to one another. Endometriosis affects 176 million women and usually takes eight to 10 months to diagnose, sometimes because their pain is written off as overreactions to bad period cramps. It took me two months to diagnose because I had every single symptom.
My doctors told me there were two treatment options: hormones (to manage the pain and stop the endometriosis from progressing) or surgery (to remove all or parts of the endometrial tissue). I tried a hormone called Lupron, but my health rapidly deteriorated. The pain became constant. I was always exhausted, no matter how much I slept. Any physical activity, even just walking to the kitchen or bathroom, was excruciating. My body ached like I had the flu, and nerve pain shot down my legs. It often felt like I was being stabbed in the abdomen, vagina, and rectum all at once. Bowel movements would make me almost pass out on the toilet. After five months of agony, I begged my doctor to take me off hormones and perform an exploratory surgery. That’s when she saw the endometriosis. She took out what she could but there was too much—I would need to see a specialist.
Before this stage, I spent my time being room mom to my son’s Kindergarten class and hiking with my family in the San Bernardino hills. But it was getting to the point where I couldn’t leave the house. So I lived online. I joined endometriosis groups on Facebook. I spent the most time in Nancy’s Nook, which I found to be one of the most educational resources for women with this disease. I learned that if you truly wanted relief, excision surgery—cutting out endometrial lesions from the healthy organs—was the best treatment. It’s a risky and complicated procedure because you’re cutting around important organs like the bladder and bowel. There aren’t many gynecological surgeons who will do it, but I found one in Los Angeles. He had a long waiting list, and I had to switch insurance providers. It would be months before I’d be in an operating room. Three months, to be exact—and they were the longest three months of my life.
During that time, my husband, a professional photographer, asked if he could take photos to document my journey before and after surgery. I agreed because I thought he would do a good job capturing what an invisible illness actually looks like. He said he felt helpless watching me in so much pain and the project would make him feel like he was helping. The funny thing about that was that he was already a tremendous help. The man was working full time and proceeded to take on the roles I had around the house. He was doing everything short of picking my son up from school every day. He held me tight while I cried and told me how strong I was. He made sure I ate and took my meds and joined me for nearly every doctor’s appointment.
And he photographed all of it: I was completely bed ridden, taking narcotics and nerve-blocking medication to manage the pain until I could get surgery. I used a heating pad 24 hours a day. That’s not an exaggeration: I had three pads and bought a convertor so I could use one during car rides. That much exposure to constant heat caused a skin condition called toasted skin syndrome all over my lower back.
Then came depression. I woke up every day with the hope that something had changed and I’d feel better, only to have reality kick in as soon as I sat up. When I felt good enough the leave the house, I was riddled with anxiety, wondering when the pain would return and how quickly I could get back home. There were people who questioned whether I was making it all up. When I canceled plans, friends would assume I was exaggerating the pain, and eventually the invitations halted. I was bedridden through Thanksgiving, Christmas, and New Year’s, and while all of my friends and family were going to parties and being festive, I was watching it on Instagram while curled up in a ball.
When I first scheduled my surgery with the endometriosis specialist, my plan was to remove the endometrial lesions through excisions. But as I continued to research and talk to doctors, it became clear to me that that wouldn’t be enough. I was experiencing abnormal bleeding that, on top of endometriosis, showed signs of an illness that sometimes accompanies it: adenomyosis, which is when the endometrial tissue not only grows outside of the uterus but actually breaks through its walls. It was time to remove my entire uterus. I was going to ask for a hysterectomy.
As a woman—a woman who was hoping to get pregnant again—that was not an easy decision. But I felt as though my own uterus was poisoning me. New symptoms kept coming, I already knew I didn’t want to try and get pregnant through IVF because hormones hadn’t treated me well in the past. As much as I wanted another child, I feel so fortunate to have been able to experience pregnancy and motherhood despite this disease, and I wanted to actually be able to focus my energy on the child I have and love.
My son is 6 and probably knows more about endometriosis than most gynecologists. I started having conversations with him about it after he began asking for a sibling, before my first surgery. I grew up with sisters and so wanted to give him that. And through tears and guilt, I’d explain why I couldn’t give him a brother or sister and why, sometime down the road, I would need surgery. But any time he saw me crying or writhing in pain, he would comfort me with a hug or a kiss and say, “It’s okay mommy. It’s not you—it’s the disease, but you’ll get better.” (He gets that from his dad.)
So I went through with it. I had to sign three waivers and convince my surgeon I was done with my fertility before he agreed to add the hysterectomy to my operation. And when I woke up from surgery, I instantly felt relief from my endo pain. They told me my uterus was so misshapen that it looked like it was 13 weeks pregnant. In a weird way, that was vindicating. My pain was real; it wasn’t in my head all along.
Still, recovery from a surgery like mine is not an easy, or painless, process. I have to continuously remind myself that I’m now barely seven weeks out of surgery and still have a long road ahead of me before I’m ready to go back to my old life. I’ll need physical therapy, as my back continuously aches, probably due to months spent in bed. I’ve been told it’ll also be months before the fatigue lifts. But I hope that soon I'll get to ride my bike and walk my son to school and travel.
I’m aware that the disease may present itself in other areas of my body in the future, but I have to hope that it won’t. I also have to remind myself of how far I’ve come. Six months ago, I could barely sit up in bed. Some of my relationships have suffered because of the challenges I faced, and I’ve had to mourn those losses, but this process has also strengthened my relationships with the people who were there for me. I won’t forget how my amazingly supportive mother, mother-in-law, sisters, and a few good friends sent me funny text messages when I needed them most, made me home-cooked meals, made it easy for me to get to the hospital, and babysat. My son crawled into bed with me for morning cuddles and Harry Potter story time, and my husband, among other things, made it possible for me, and other women suffering from this to disease, to see it like no one else gets to. Not only did they make me feel like I was loved, but they believed that my disease and my pain were real.