I underwent excision surgery three weeks ago, and I wish I could say I finally have all the answers I’ve been looking for, but I only have one: I have endometriosis. And for now, that will have to do. After all, that alone was like finding a missing page in the storybook of my life—one that doesn’t rewrite the past but makes me see every chapter differently.
I have been on a 15-year journey of living with an invisible disease that has shaped my life. I’ve had cysts on my ovaries; irregular, heavy, and painful periods; digestive issues; severe pain in my abdomen, pelvis, and bowel; referred nerve pain along my rib; pain radiating down my legs; severe low back pain; fainting spells during my period; brain fog; and extreme fatigue. Despite being dismissed and misdiagnosed by doctors, I lived with an ever-present sense that something was not right.
With this diagnosis, I have been reflecting on the last decade and a half, including the many unexplained ER visits, EKGs, MRIs, CT scans, stress tests, and UTI tests that did not detect anything abnormal. There were times I was toppled over in the bathtub in agonizing pain and full of anxiety because I didn’t know what could cause that much pain. I also recall the shame-based narratives I created about myself for struggling to stick to a routine and get to work on time, missing out on jobs, stressing out before events that I might not be well enough to attend, feeling “too sensitive” about things because my entire body felt like a raw nerve, needing to sleep to cope with sleep deprivation and exhaustion from breastfeeding when my children were babies, and feeling like I was letting my family down when I was unable to show up the way I wanted to as a mother.
The first time I felt the knife-like stabbing pain was when I was 19 years old and modeling in Milan. “Endometriosi,” or polycystic ovarian syndrome, proclaimed an Italian doctor after seeing a cyst on my ultrasound results. Upon returning to Toronto, a doctor said I had indications of both conditions. He opted to treat my symptoms hormonally, first with an IUD and later with birth control. I continued to see doctors in Vancouver and Los Angeles and was given confusing misdiagnoses like IBS. I was fortunate to have two children, but my symptoms worsened after each birth. The flare-ups and excruciating periods I had before my second child was born became everyday chronic pain after her birth.
After several visits with my OB, I requested an MRI, which revealed I had adenomyosis. I went back to her, in tears from the pain, and asked if adenomyosis could be the cause. Only then did she say that if I have adenomyosis, I most likely have endometriosis as well—and she referred me to a surgeon. In the month leading up to surgery, I ended up back in the ER because of the unbearable pain.
Endometriosis has been devastating for my whole family. I am fortunate that my husband has been home to help me, and since we don’t live near family, we were able to enlist a part-time nanny to provide support. When the pain was too severe to sleep, I often searched through endo Reddit forums and would read about women with my symptoms spending the day—or even the better part of the year—in bed. But to meet my family's needs, staying in bed was rarely an option. As any parent knows, the more children can sense that a parent needs to retreat (even if it’s to rest), the more they cling to you. It was difficult for my kids and heartbreaking for me. Feeling my son wrap his little arms around my neck and my daughter’s gentle kisses were the two things that brought me relief.
For the surgery, my mom flew in for 10 days to help take care of our children. Before leaving for the hospital, I looked into their eyes and smiled, quickly kissing their cheeks before turning away as the tears rolled down mine. I’d never been more riddled with fear than when I was lying in the hospital bed squeezing my husband’s hand, waiting to go under general anesthesia—yet I knew I had to do it to be there for my children.
Endometriosis has taken me through the five stages of grief:
Denial – After being told by countless doctors that I was “extra sensitive” or that some women “have it worse than others,” I started to believe them. I clung to the possibility of a PCOS diagnosis because the idea of surgery for endo scared me. When allergy tests came back clear, I was told anxiety was likely the cause of my digestion issues—so I blamed myself. I wanted to believe my body had been healed with acupuncture because my doctor said so. Despite these moments of denial, a deep inner knowing kept pushing me back to the doctor’s office to advocate for myself.
Anger – I’ve felt anger when friends or family complain about trivial things, unaware of what it takes to mother through chronic pain. Even if I knew it was coming from a good place when loved ones would question or minimize my symptoms or compare them to a backache they were having, I wished they could live in my body just for the day so they could understand. At times, it felt like my body was betraying me despite my best efforts to take care of it. I felt profound disappointment toward doctors who judged me when I said I was a model (as if that undermined my credibility), who told me, “You look perfectly healthy,” or who only took me seriously if I didn’t wear makeup to appointments. I also felt a quiet rage toward the medical system for having no test (apart from surgery) that can provide a definitive diagnosis for a disease affecting more than one in 10 women.
Bargaining – Over the years, I have thought, “If I just took birth control or had an IUD like doctors suggested, got more sleep, changed my diet, practiced mindful eating, did acupuncture, took the right supplements, partook in healing practices, stressed less, took the pressure off, did less—if I just pushed through— maybe it would get better.”
Depression – I have felt deep sorrow for missing out on life—namely, everyday moments with my children. I consider myself a sunny, glass-half-full, sky-is-the-limit person. Even throughout my most challenging hurdles in life, I have been drawn to the light. Metaphorically and literally, as a model and photographer, the light is something my eye naturally looks for. But over the last year, it has been difficult to see the light I knew was still right in front of me. Only post-surgery am I noticing and enjoying the beautiful little moments unfolding around me.
Acceptance – Now that I finally have a name for the condition I have been living with, I can begin to accept it and understand that the healing process will be continuous. With acceptance, I can look back with so much love at the young woman who was made to question herself. I can begin the work of undoing the blame I have put on myself for not being able to show up in the world the way I want to. I can give myself permission to rest and say no to taking on too much instead of white-knuckling it at my own expense. As I have just begun to share my story, I have had countless women—friends, acquaintances, strangers—reach out to tell me they are also in this “club,” silently suffering. And while it’s an awful club to be in, if there is anything that suffering has taught me, it’s that it is the source of deep connection with others. And without it, we would not have the perspective to not take the simple things for granted. With acceptance, I have felt inspired to advocate more for women's health issues. I am about to launch a podcast called the Mother Circle, and I plan to use that as a platform to spread awareness about this condition.
Endometriosis is a thief, but it has also been a teacher. It has reshaped my priorities, crystallized my values, and deepened my compassion, especially for mothers facing adversity. A challenging aspect of mothering with endo is how loud and intense everything can feel when your nervous system is in such a heightened state of stress. Add toddlers running full blast, yelling at the top of their lungs, and it can feel overwhelming. Something that has been very helpful is practicing “co-regulation” with them, where I consciously model the behavior of calm in times of stress by limiting language, offering a hug, and taking deep breaths together.
Although most days I feel weak, living with endo has made me a stronger, more resilient mother. I can’t hide this condition from my children or pretend everything is always okay. Children are so much smarter than we give them credit for, and they know when things are not okay. If I pretend everything is fine when it is not, how will they trust me or learn to trust themselves? When they see me in pain, I am honest with them—“Mommy’s tummy is hurting,” or if the pain has brought me to tears, “Mommy is feeling sad, and it’s okay to feel sad”—showing them that feelings are just feelings, and we don’t have to be afraid of them or hide them. Being vulnerable with my children in a way that still makes them feel safe, secure, and cared for is what I strive for. A silver lining is that I have been forced to let go of any unrealistic expectations I once had for myself as a mother, and in doing so, I’ve been reminded that less is more. When it comes down to it, what they need most is presence, love, and affection. That is where I direct all of my energy.
Before the surgery, I asked my surgeon how long I could expect recovery to take. This question was impossible to answer, given that everyone’s case is different. I was told it could be one week, but for some, it takes much longer. I’m so glad I read several stories from women who had been through it to adjust my expectations. Every day I wake up and hope I will have a pain-free day. Some days the heating pad and painkillers can’t even touch the pain; other days, I feel better than I did before the surgery. The nurse said I can expect pain for the first three months, and then we will re-evaluate. Every day, I try to remind myself what I learned from healing after giving birth: both the mind and body need time to heal, and healing is not linear.
I recently saw an integrative health doctor in LA who specializes in endometriosis who has the disease herself. As we began our appointment, she said, “Taylor, I often see a look of anger on my clients’ faces when they walk through the door, but with you, I see a look of fear.” She could see what I was afraid of: what if this pain doesn’t go away? For the first time, I truly felt seen by someone who has felt the pain and lived through it. This made me realize just how alone I have been feeling, and it also filled me with hope. At 54, she had the youthful face of someone in their early 40s. Despite having three laparoscopies, she still had a twinkle in her eye. Meeting her felt like a gift, as if I got a glimpse of a version of myself in the future that wasn’t overcome by this disease—a version that was confident and empowered.
With gentle precision, she inserted the acupuncture needles, and as she left me to rest in the dimly lit room, she whispered, “Let this be just another healing chapter in your book.”
I don’t have all the answers, but I finally have one—and for now, that's enough.
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
