My Endo Story
A Journey of Resilience, Creativity, and Hope
My endo story actually starts before I was even born. In the early 1980’s, my mom was diagnosed with endometriosis and underwent a surgery to repair some of the scarring caused by this disease. Turns out this was causing infertility issues, preventing her from getting pregnant. Fortunately, just a short time after her recovery, my mom got pregnant…with me! As an only child and a female, I grew up with the awareness that endometriosis could be an issue for me. Once I reached my own reproductive age and started my menstrual cycle, it became clear that this part of my life was not going to be easy. For most of my teens and early 20s I was on birth control due the overwhelming amount of pain and bleeding that occurred each month. So, from ages 13-32, I dealt with the effects of miserable monthly cycles that impacted my quality of life and took an emotional toll. Even knowing my family history and check ups with my gynecologist, this slippery disease still creeped its way into my body and showed up with a ferocity I didn’t expect nor was prepared to handle.
“I support the Endometriosis Foundation because every person suffering from this debilitating condition deserves a voice, better treatment options, and hope for a cure. By funding research and increasing awareness, we can transform the lives of millions who endure the chronic pain and challenges of endometriosis, ensuring they receive the care and understanding they deserve.”
It wasn’t until December 2017 that everything changed, and I found myself in a life threatening situation. I was going about my day as usual, with a little pelvic pain on my left side. I had been driving a lot that day for a work trip and thought it was just from sitting too long. Well, 6 hours later, I am at home decorating the Christmas tree, and suddenly I am doubled over in pain so great, a pain I have never experienced in my life. For those who know me well, I am stubborn when it comes to pain and going to the doctor. My husband pleaded with me to go to the ER, and after a couple more hours of misery, I conceded and we drove to the hospital.
Turns out that a cyst, called an ovarian endometrioma (aka chocolate cyst), had ruptured into my abdomen and was leaking large amounts of menstrual blood into my chest cavity. Enter my mother-in-law who is a nurse. When she arrived at the hospital she immediately called an OB-GYN surgeon whom she worked with and in no time I was being carted off in an ambulance to another hospital for emergency surgery by a women’s specialist. When you wake up from surgery to find out that a large amount of blood, from a cyst (the size of a plum) you didn’t even know existed, is pulled from your body, you’ve had laparoscopic ablation to help with scar tissue, and fibroids removed, you have this out of body experience where you can’t quite grasp that it’s me they are talking about because you are just positive this can’t actually be happening. I understood all the doctor was telling me and the confirmation that this was endometriosis, but it didn’t really sink in until I got home and the recovery began. I couldn’t even sit up by myself. My husband was a saint, he gave me baths (and shaved my legs), helped me get dressed, fluffed my pillows, administered pain meds, fed me; you name it and he made sure I made a full recovery.
2017
Post surgery and diagnosis, it felt like this hidden enemy living inside me, wreaking havoc on my body, a time bomb that could go off at any moment putting my life at risk. It was a sobering moment to realize that this disease, this thing that finally had a name for all the pain it caused me, would significantly impact the rest of my life. For the next 6 months, I experienced the physical and emotional recovery from the surgery and spent time with my new doctor, learning about how to live with this condition. She also confirmed that my severity of endometriosis was at Stage 3 of 4. I felt isolated, and the shame that followed it, because as a woman my body didn’t work “correctly”. I now had questions about whether I would be able to have children one day, and how this would affect my quality of life, my ability to work my job.
So when I found out that endometriosis affects approximately 200 million women worldwide, often shrouded in silence, shame, and misconception, it was inconceivable to me to discover that so many women were struggling with this too. While that was comforting in some respects, knowing I wasn’t alone, I realized how mysterious this disease still was to the medical community and how research and advocacy is still pretty low on the totem pole.
After Diagnosis
Fast forward to 2020 at the height of the COVID pandemic, another more extensive emergency surgery reconfirmed the seriousness of my condition. Another cyst had ruptured, this time the size of a grapefruit, plus an additional cyst partially removed but due to its location (adhered to my bladder!), the surgeon couldn’t remove it all, part of my left ovary was removed, and I had officially progressed to Stage 4. Something had to change, and after I had time to heal again, and come to grips with the fact that motherhood might no longer be a choice I get to make for myself, my husband and I decided to focus primarily on my overall health and tackle my potential fertility complications.
We spent months considering IVF and all its implications, visits to fertility doctors, thyroid tests, ultrasounds, egg counts, you name it we researched it. But even after all of that, my endometriosis was still causing me significant pain and discomfort, terrible menstrual periods and a lower quality of life. It was about this time, that I started considering starting a business, but did not feel as if I could physically make it happen. That’s when I knew I had enough and finally decided to take some action. I called my fertility doctor in tears one day and they referred me to an endometriosis specialist at UVA. This doctor has been a Godsend.
2020
It's been almost 4 years now, and I can honestly say I feel tremendously better than I have felt since my 2017 diagnosis. With this amazing specialist and medication that allows me to have significantly reduced pain and discomfort, I am living a life that is full of purpose and happiness. And most especially one that has given me the strength and courage to make Anam Cara Clay Goods a reality. And though this disease is something I think about everyday, I no longer let it control me; instead, I feel strength in my resolve to conquer obstacles with grace and resilience. This condition has taught me a lot about myself, the type of person I want to me, the things I have lost, the ability to grieve, and a chance to look in the mirror and see a whole person. One of my favorite quotes by Morgan Harper Nichols says this: “How liberating it is to pursue wholeness over perfection.” So though my body is by no means perfect, nor has it ever been, and a few parts are missing here and there, each day I remember that my wholeness is not defined by this disease, better yet, it is because of this disease that I am more fully becoming who I am meant to be.
I don't know how much you know about endometriosis, but I encourage you to educate yourself about the disease and the effects it has on an estimated 1 in 10 women in the U.S. alone. It is an invisible disease and with it can be a hidden pain and terrible shame. And it is imperative that more research and advocacy be done to find more effective ways to help women cope, and well, live fuller lives. In 2021, I found The Endometriosis Foundation of America, an organization that “strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.” It was then that I realized that I too could make a difference, I could be a voice that shared my story to help spread the word and advocate for other women. These Endo Warriors, face each day (with the unfortunate realities of this condition) with bravery and a fighting spirit.
Today
“Endometriosis affects millions of women worldwide, including myself, with its chronic pain and challenging symptoms. By raising awareness and supporting research, we can work towards better treatments and a brighter future for all those impacted by this condition.”
