The problem with endometriosis is that it often produces no symptoms, or its main symptom is infertility. And it has been shown that treating even mild disease (no symptoms) can double subsequent pregnancy rates. In the current climate of IVF access and success, many choose to go straight to IVF and potentially avoid surgery. But if IVF is not successful, laparoscopy for endometriosis is certainly a reasonable option.

– Dr Gavin Sacks

Endometriosis: You may have heard the word, but do you really know what it is? Many women don’t until they find out they have it … which would make sense if it weren’t so common. One in 10 girls and women suffer from the disease, according to the Endometriosis Foundation of America – Lena Dunham, Padma Lakshmi, and Daisy Ridley among them.

Normally, hormones spur the uterus lining to build up, then shed (that’s your period). In a woman with endo, cells that are uterus lining-esque but live outside it grow in response to these hormones too. The cells “get thicker and thicker, but there’s nowhere for them to go,” explains Iris Kerin Orbuch, MD, the director of the Advanced Gynecologic Laparoscopy Center in NYC. The result: intense pain, caused by both inflammation and because cells can distort anatomy and pull on organs.

This pain can go untreated for years, an issue highlighted in a new documentary Endo What? Symptoms are all over the map – cramps, fatigue, painful sex, infertility, even trouble breathing. That, plus the fact that endo cells aren’t picked up by medical imaging “makes it very difficult to diagnose,” says Dr. Orbuch. Women go a median of 8 1/2 years between symptom onset and diagnosis, per the American Society for Reproductive Medicine. These women were told they had digestive or mental issues and more … but actually, they had endometriosis.

“They said I had a ruptured cyst…”

Cassidy Haney, 20
Panama City Beach, Florida

“I went on the pill for irregular periods when I was in seventh grade. My period could be really frequent or super heavy, but it was always painful. Tampons hurt. One day junior year, I passed out from the pain. A gynecologist told me ‘a cyst ruptured’ and gave me pain meds. Things didn’t get better. I was confused and angry. The ob-gyn just changed my birth-control prescription. I thought, She’s a doctor. She knows what she’s talking about.

During my freshman year at NYU, I was having trouble walking – I needed a cane! It felt like after an abs workout, when you’re so sore, you can’t straighten out. That semester, I filtered through my friends, weeding out the ones who rolled their eyes and said, ‘We all cramp during our period.’

Eventually, I went to the health center. Not for anything period-related, but because acidic foods made me vomit. The doctor thought it was odd that I could eat provolone cheese but not pepper jack and sent me to an internist. He said, ‘This sounds like interstitial cystitis [IC],’ which is a bladder issue, and asked about my health background.

I got so lucky: He sent me to his sister-in-law, who happens to be an endometriosis specialist. Often they run hand in hand, IC and endo. She did surgery and took 14 specimens from my bladder and removed my appendix. It was completely covered.

There’s still a spot of endo on one ovary that she left behind to preserve my fertility, but I’m at, like, 5 to 15 percent of the pain I had before. I haven’t had to miss school or use a cane. My periods are two days long. It’s a 180.”

Article originally posted on Cosmopolitan, September 8, 2016. Written by Danielle McNally.