I was 43 when I learned that I have silent endometriosis. I’d heard of endometriosis—a chronic disease where tissue similar to the lining of the uterus grows outside the uterus, typically on the ovaries, fallopian tubes, pelvic walls, or other surrounding organs. Because of the advocacy of celebs like Padma Lakshmi, who has the condition, I knew that it caused severe, sometimes debilitating pain—terrible cramps, pelvic pain, fatigue, and sometimes searing nerve pain.
It sounded awful but it was nothing I had ever experienced. My life has been pretty much pain-free thankfully (existential crises notwithstanding). So when I found out I had extensive endometriosis that necessitated the removal of my left ovary during laparoscopic surgery, I was shocked that my body had been harboring a chronic condition that I was clueless about.
Like many people with endo (the condition affects as many as 1 in every 10 American women), I had unexplained infertility. In my 30s, we tried for nearly two years without success to conceive the old-fashioned way, and then went through the usual blood tests and ultrasounds which didn’t give us any information. My husband got tested too, and his equipment was all in working order. I tried taking Clomid, a medication used to promote ovulation, and when that didn’t work, we were referred to an IVF clinic. The crazy part is, none of this led to the discovery of my endometriosis, which I now know is likely the reason I wasn’t able to get pregnant.
“Endometriosis is one of the leading causes of infertility. In fact, research shows that up to 50% of women with ‘unexplained infertility,’ meaning all fertility testing is normal, are found to have endometriosis once they undergo surgical evaluation,” Ashley Davis, MD, FACOG, a gynecologic surgeon and endometriosis excision specialist based in Atlanta who also has silent endometriosis, tells SELF.
“Many of these cases are ‘silent,’ meaning there were no classic pain symptoms prompting earlier investigation,” she says. “This is why, when fertility testing is normal and no other cause is found, it’s critical to consider endometriosis as a potential factor.”
Thankfully, our one shot at IVF led to boy/girl twins. But the way I finally found out about my endo was scary. My former ob-gyn had the unconventional practice of ordering routine ultrasounds as part of preventative care. This is considered controversial because these tests can give false positives, causing anxiety and sometimes leading to unnecessary (costly and invasive) procedures. When an abnormal finding was detected on my ultrasound, I was advised to schedule laparoscopic surgery—the only definitive way to tell what it was. Having never undergone surgery apart from a C-section, I was scared and worried that this sounded so extreme. But when my doctor told me there was a mass on my lady parts, I wasn’t going to take a wait-and-see attitude. So I scheduled my surgery with a top gynecologic oncologist and hoped and prayed for the best outcome.
