When I married my husband, Ryan, on Valentine’s Day in 2021, I could barely stand long enough to exchange our vows. Riddled with pain and exhausted from endless doctor appointments, I moved through the ceremony in a murky daze from my debilitating, invisible illness: endometriosis. It had taken over our relationship — and now, our special day, too.
The disorder, in which glands of the uterus lining grow outside of it, relentlessly ravages ovaries, fallopian tubes and surrounding areas by acting as imposter tissue, according to the Mayo Clinic. With no way for that tissue to exit the body during a menstrual cycle, it soon manifests as cysts, scar tissue and adhesions that, for some women, can make life unbearable.
Endometriosis impacts roughly 10% of reproductive-aged women and girls, according to the World Health Organization. Painful periods, intercourse and bowel movements, as well as GI issues, can signal endometriosis, but Anate A. Brauer, M.D., reproductive endocrinologist and IVF Director at Shady Grove Fertility in New York City, says a suspected endometriosis diagnosis based on symptoms alone can be tricky.
“Endometriosis notoriously masquerades as other potential disease processes and oftentimes, symptoms do not equate to burden of disease,” Brauer tells TODAY. “The average time to a diagnosis of endometriosis is 10 years because women are taught from the time we are young that periods are supposed to be ‘painful.’”
If left untreated, the emotional repercussions can be strong, something I know all too well.
When I met Ryan through a kismet dating app encounter in 2020, my endometriosis diagnosis had already been a part of my life since my teens, and I'd lost hope it could ever feel better. The excruciating and unpredictable menstrual cycles, the devastating fertility issues that resulted in miscarriages, and the large cysts that led to an ovary removal were my “normal.” I’d become so used to this way of life I never realized these things would soon become our normal, too.
I pretended for a while, long enough to get to know this sweet man, hoping the pain would magically disappear so we could find a happily ever after. But a couple of months into this exciting, new relationship, my life-altering pain revealed itself, making things like sex impossible, and heating pads with ibuprofen the new date-night hot ticket.
It seemed as though suddenly, there were no longer two of us, but three — Ryan, me and this silent third entity that controlled my every move. Though I’d mitigated the pain for years, things seemed to worsen shortly after meeting Ryan. Suddenly, I couldn’t care for my two kids or work a normal schedule or run my marathons without feeling its wrath gnawing at my insides. I couldn’t even walk to the corner stop sign without writhing in pain. And, despite relentlessly advocating to apathetic doctors, there came a point when something had to give before my relationship was ruined, or I was.
Though birth control pills, progesterone emitting IUDs, and other medications can help mitigate symptoms for many, that wasn’t the case for me. At 38 years old — three months before our wedding day — I chose to have a full hysterectomy in hopes of saving my marriage before it ever began. So we could have a normal sex life not ruled by pain. So I could work or spend time with my kids without doubling over. So we could make plans that didn’t revolve around this incessant disease. So I, we, could finally be free.
Unfortunately, that’s not what happened.
The surgery meant to mitigate my endometriosis did not cure me, but it did become another entity between Ryan and me. While many women heal after 6-8 weeks post-surgery, my body, which had always worked against me, held onto the wounds like lifelines. A rebellion came in the form of infections, intense pain, incontinence and the inability to stand for long periods of time, including at my own wedding.
Though Ryan offered nothing but full, unwavering support, a distinct change occurred in the weeks and months thereafter. No sooner than Ryan became my husband did my endometriosis and hysterectomy unfairly corner him into the roles of caregiver, platonic companion and overworked stepfather.
Instead of honeymoon escapades, or enjoying the merge of our blended family, we spent our time as newlyweds navigating various treatments — from the alternatives to the invasive — only to realize that none of it helped. I still hurt, and would hurt, for a long time to come.
“Living with cyclical severe pain is isolating and hard to understand,” Brauer says. “Inability to function several days out of a month can create arguments over daily tasks and responsibilities. Furthermore, pain with intercourse strains intimate aspects of a relationship, further stressing a marriage.”
Likewise, Brauer says a hysterectomy alone isn’t a cure.
“Ovaries continue to produce hormones and can flare existing lesions in absence of a uterus,” she says. "If your doctor doesn’t believe you’re in pain, find a different doctor. There are so many great medical and surgical options to help you manage symptoms and live a life free from debilitating pain.”
Lucky for me, my new husband didn’t complain or run or blame me for any part of it. Because, this, as he often reminded me, is what marriage truly is: commitment, patience, understanding and devotion.
It took nearly a year for my physical traumas from the endometriosis, hysterectomy and invasive procedures that made things worse to ease up. I had to force myself to slow down and rest, even if it took a lot longer than other women. By then, Ryan and I had grown and shifted into different versions than the two of us that first met. I still have bouts of endometriosis pain, and I still grieve the relationship I wish we’d had from the start. But in the end, I’m reminded of how far we’ve come and how deeply those vows — in sickness and in health — resonated.
And now, I can stand long enough to tell him so.