As told to Jacquelyne Froeber
March is Endometriosis Awareness Month.
I remember having issues with my period as a teenager, but it was in my early 30s when I started having pelvic pain and cramps that wouldn’t go away.
I made an appointment with my gynecologist and she said I had some small cysts, but they — and whatever pain I was in — were nothing to worry about.
But over the next few years, my symptoms got worse, and it became a big deal. In addition to the pelvic pain, I had back pain, constipation, bloating, heavy period bleeding, pain during sex and blinding headache attacks. Some days were so bad, I couldn’t get out of bed.
I knew some people thought I was being dramatic, but no one could see the smattering of lesions and abnormal tissue growing on and around my reproductive organs, causing inflammation and pain, and wreaking havoc on my insides.
When I was 36, I decided to go to another gynecologist thinking she may understand my pain. Unfortunately, she didn’t. “That’s just how periods are,” she said. But eventually, she did refer me to a healthcare provider (HCP) who treated
endometriosis.
I’d never heard of endometriosis before. So, even though I was infuriated that she dismissed my symptoms, I was thrilled to have a follow-up with someone who may actually be able to help me.
After the new HCP ordered a series of tests, we collectively decided to do a laparoscopic procedure where a thin, lighted tube (laparoscope) is inserted through a small incision to look at the pelvic cavity and identify endometrial tissue.
When the results came back, he said I had endometriosis. I felt a flood of relief and a surge of adrenaline. I could finally start to move on with my life. We then decided to go forward with endometrial ablation. After the procedure, I felt better for a few weeks, but then all the symptoms came back.
“What’s our next step?” I asked my provider.
“Go out there and get pregnant,” he said.
He wasn’t joking.
He went on to say that most women have fewer symptoms of endometriosis during pregnancy.
I immediately felt myself retreat back into my shell. My mind whirled. What he said was completely inappropriate. Nevermind the fact that I was single and that no one can stay pregnant forever — Then what? — pregnancy is not a treatment. My abdomen screamed in anger and agony. but my brain started to go numb.
After I made it clear that, if I wanted to get pregnant, it wouldn’t be to treat my disease, I was prescribed an injectable medication in the hopes that it would shrink the endometriosis.
Ironically, the medication put me in a menopausal state, and I quickly added hot flashes, vaginal dryness and dramatic mood swings to my growing list of health issues.
One minute I was perfectly fine, and the next minute I was sobbing and hiding from the world. The side effects were so extreme I stopped taking the medication not long after I started it. There had to be another way.
After a few visits to different providers, a surgeon in Baltimore took my endometriosis symptoms seriously, and we decided on excision surgery to cut out the affected areas.
I was cautiously optimistic about the procedure given all I’d been through — but when I woke up from surgery, I knew something was different. The surgery had worked! For the first time in years, I had a significant decline in pain. I started to feel like my old self.
Lindsey on Capitol Hill advocating for endometriosis funding and research.
But the excitement was short-lived. A few months after the surgery, the pain and the heavy bleeding came back.
My HCP recommended a different injectable medication (which I later learned was typically prescribed for men with prostate cancer), but the side effects were even worse than the medication I was on before. I stopped taking it.
All of the medications, surgeries, hormones and pain took a significant toll on my mental and physical health. After I turned 40, I quit my prestigious job in Washington, D.C., and moved back home with my mom and stepdad. I felt broken. I spent my days in a fog wearing sunglasses inside their house.
My mom and stepdad supported me and took care of me for the next six months until I felt strong enough to move out and live on my own again.
Still, every day was marred by the symptoms of endometriosis. I went back to the HCP who performed the surgery to see if there was anything else I could try to manage the disease. Turns out, there was an option — a hysterectomy.
I’d known a hysterectomy was a possibility, but it seemed so extreme. A hysterectomy meant zero chance to bear children. I didn’t know if I could make that decision. I left the appointment feeling alone and confused and furious that removing my organs was an option at all.
I didn’t take the decision lightly. Six months later, I decided to have the hysterectomy and also remove my left ovary — the one that hurt the most.
After the hysterectomy, the surgeon told me that everything went fine but they removed the right ovary — not the left. Why? He said the right one looked “worse.”
“But that’s not what we decided before the surgery,” I protested. “My left ovary is the one that hurts.”
And it still does today.
To make matters worse, the hospital wanted to discharge me the day of surgery. I refused. I couldn’t believe they wanted to send me home after removing all my reproductive organs. This was a major surgery but they were treating me like I came in for a routine checkup.
That day was the tipping point for me. I shouldn’t have had to beg and plead to stay at the hospital that night (they eventually cleared me to stay). I shouldn’t have had the wrong ovary taken out without my consent. I should have more treatment options that didn’t involve taking body parts in the first place.
I was done feeling dismissed and like my feelings didn’t matter. They did — they do.
During my endometriosis journey, I found it very important for me to get involved in an endometriosis community. I connected with the CEO of the Endometriosis Association who welcomed me with open arms to share my story to educate others and raise more funding for endometriosis. This was also my way to speak out against everyone who didn’t take me — or the disease — seriously.
Increasing awareness about endometriosis has become my full-time job. Over the years I’ve done many interviews and speaking engagements. I was honored to be the Endometriosis Association’s first brand ambassador, and I continue to advocate for research on Capitol Hill and through my own website.
I keep telling my story because there’s still no cure for the disease. I want more awareness. I want more funding. I want more research.
We can’t accept that our options are either pregnancy or hysterectomy. We deserve to be heard, and we want action. We just don’t want the action to be removing our body parts.
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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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