I was 43 when I learned that I have silent endometriosis. I’d heard of endometriosis—a chronic disease where the lining of the uterus grows outside the uterus, typically on the ovaries, fallopian tubes, the 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 one 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 also 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.

When I woke up from surgery, I got the news that what the doctor found was endometriosis (not cancer), and that it was so extensive it necessitated the removal of my left ovary. I had silent endometriosis, and it was the most probable explanation for my unexplained infertility. I wish I could say that now there’s an easy way to detect silent endo, but according to Dr. Davis, surgery is still the gold standard for definitive diagnosis.

“Because silent endometriosis doesn’t announce itself with pain, early detection can be challenging,” she says. Yet, there are still important opportunities to catch it:

• Imaging findings: “If an ultrasound or MRI shows signs of endometriosis—such as an endometrioma (ovarian cyst consistent with endo) it’s essential to follow up with a specialist, even if you’re not experiencing pain,” says Dr. Davis.
• Subtle symptoms: “Once you speak with a specialist who understands the full spectrum of endometriosis, you may realize you do have symptoms you didn’t recognize as abnormal – things like pain with intercourse, discomfort with bowel movements or bloating and fatigue. These can all be signs of endometriosis.”
• Infertility clues: “If you’re over 35 and have been trying to conceive for six months, or under 35 and trying for a year, and all fertility tests look normal, ask your doctor if endometriosis could be a factor. Sometimes, excision surgery can improve natural fertility by removing disease that was otherwise undetectable.”

When I look back at those years of not knowing why my body wasn’t working, I’m shocked that so little is known about a disease that affects so many women. We can clone a sheep, put a probe on Mars, and come up with drugs that give older men erections, but we don’t know more about the inner workings of women’s bodies.

These days I go to a small gynecology practice that specializes in perimenopause and endo. There, the doctor changed my hormone replacement therapy (HRT) meds to include a progesterone-only birth control pill for suppression of endo—an idea the doctor I'd seen prior had not considered.

As women we need to seek out the healthcare providers who are truly listening, learn as much as we can, and speak up. While silent endometriosis is scary, by advocating for ourselves and other women, we can give those who have it a voice.