In the early morning hours, my daughter wakes. I prepare her bottle, cradle her in my arms and feed her. As she touches my lips with one chubby hand, the other holds onto her white muslin blanket with the lion print — her blankie. I try to smile and interact with her like I normally do, “How was your sleep, baby girl? What do you want to do today?” However, this particular morning I am in agony, in the middle of a flare-up and all I can do is watch the formula slowly leave the bottle and pray she drinks faster. In this moment, all I want to do is grab my heating pad and curl up under the covers.
These precious, fleeting 6 a.m. interactions that I cherish so much were wasted this morning; I spent them distracted and focused on breathing through the pain radiating in my abdomen. I felt like an awful mother.
Endometriosis pain is bad, but when exacerbated by guilt — it is unbearable. Working mothers often talk about the guilt they feel not being around for every day events — big or small. But it’s an altogether different brand of guilt when you are present but still absent. Although it may be out of your control, it is still devastating.
I have had endometriosis for many years. Since my early 20s, I’ve experienced intense, consistent left side lower abdominal and pelvic pain. This pain is caused by endometrial tissue growing outside the uterus. In my case, the tissue grows on my ovaries and bowel. It took many years to receive a diagnosis, and once I did, the options for treatment were limited. A gynecologist performed a laparoscopy to remove the lesions and scar tissue causing my pain; however, I never experienced any relief after the procedure. Birth control had already failed to minimize my discomfort, and I was against receiving Lupron injections to manage it as the side effects seemed almost as terrible as the disease. Lupron would essentially put my then 30-year-old body into early menopause — the idea of which was incomprehensible. My doctor mentioned that having a baby has been known to help women suffering from endometriosis. I tucked this information into the back of my mind and pursued alternative treatments.
I spent two years managing my disease effectively with holistic methods before deciding I was ready for a baby. My husband and I were excited to begin trying for a little one, but our expectations were realistic. We knew the likelihood of infertility as a complication of endometriosis. Despite a potentially gut-wrenching process, we were fortunate — and surprised — to conceive our daughter in April 2018.
Prior to conception, I had been controlling my chronic pain with a combination of herbs, teas, gluten-free eating and other holistic methods. While the pain was generally mitigated by this course of treatment, I still had occasional bad days filled with sharp, sporadic pain. So when I stopped having flare-ups during my pregnancy, I was both overjoyed and optimistic. Perhaps the doctor was right —pregnancy could ultimately alleviate endometriosis.
After seven weeks of contractions, bed rest and the sudden burst of water in the middle of the night at 36-weeks pregnant, my daughter was born. Although groggy from drugs and hormones and ineffable emotions, I remember the doctor coming into the recovery room not long after the delivery to tell me that she did not see any evidence of endometriosis while performing the cesarean-section to deliver my daughter. While feeling relieved at this news, in that moment, I hardly considered it important. My mind was focused on this beautiful, tiny, five-pound human that my body had brought into the world. In spite of suffering from an illness that leaves many women battling infertility, I created life. I was in awe.
At three month’s postpartum, I was pulled from sleep in the middle of the night by a familiar radiating pain in my abdomen. During the short, intervening hours between late-night feedings, I woke with a start. The sleep was light, the kind of disrupted, nervous slumber that belongs to new parents, but it still took me a full minute to realize that the baby was fast asleep, her tiny fist above her head, free from the tight swaddle my husband and I had practiced even before her birth. I wasn’t responding to my daughter; I was reacting to endometriosis pain.
It’s sometimes difficult to maintain a consistent regimen for controlling my chronic condition while also being a new mother. I’m easing back into my holistic rituals; however, there are still some days that I experience pain that takes my breath away. I’ll be reading to Fiona and it will come on, unexpectedly, and all at once. I’ll put the baby down in her pack n’ play and rush off to grab my heating pad. New mothers are expected to be tired, but not from sleep interrupted by episodic pain. The time you have to sleep as a new parent is invaluable so spending it awake and in pain is frustrating.
But things have slowly returned to normal, or, that is, to a new normal. My relationship with my body and my pain is different, too. I have a new scar to go along with the small, white twin lines decorating either side of my lower abdomen from the laparoscopy I had three years ago. I look at these scars in the mirror and read them like lines in a story — a story about a woman’s pain and her happiness. The joy of motherhood. These scars are gratitude, perseverance and defiance. I challenged my body to create life in spite of endometriosis. I challenged myself to endure and conquer chronic pain. Endometriosis is a part of me, but it isn’t who I am. It doesn’t define me as a woman or as a mother. My daughter is my world, and, with or without endometriosis, she is ultimately all that really matters.