What if we never went to school together, and I just floated around, not knowing what this was?
That thought enters Nicole Ferrer’s mind almost daily. The person she’s referring to is a friend from middle school who posted details on Facebook last year about having endometriosis. Ferrer had never heard of the disease, but her symptoms appeared to be similar, which led Ferrer to contact the woman for guidance. In October 2023, after more than 11 years of suffering, Ferrer was diagnosed with endometriosis and had surgery to remove it.
“I really wish I’d heard it come out of a healthcare provider’s mouth first than have to learn about it from someone on Facebook,” Ferrer said. “She’s the best. I owe her my life.”
Ferrer, from Union County, New Jersey, began experiencing symptoms with her first period at 13.
“I spent the next decade of my life just handling it,” she said. “Even though I’d miss school and other events, people kept saying it was normal.”
In December 2022, the pain heightened to an unprecedented level. Ferrer tolerated it for the next month.
“In January 2023, I was at work and having my period and almost fainted because of the pain,” she said. “When I went to the emergency room, they ran labs and determined nothing was wrong.”
In March, Ferrer felt a sharp stabbing pain on her right side near her stomach, worse than what she’d felt two months earlier. The pain intensified through the spring and summer, causing her to miss a lot of work. Ferrer went to numerous doctors who couldn’t diagnose her. They never mentioned endometriosis.
“I went to GI doctors, went on different types of birth control, did acupuncture, and tried prescribed and over-the-counter medications,” Ferrer said. “I even tried SSRIs (selective serotonin reuptake inhibitors, a type of antidepressant) because some people said I had anxiety.”
In July, that Facebook friend posted her endometriosis story.
“I told her this might be going on with me and asked if she could share more information,” Ferrer said. “She taught me the ropes of what was going on and explained things that medical professionals never mentioned when I presented them with my symptoms.”
In October, Ferrer went to her friend’s doctor, an endometriosis specialist, for surgery. He found a severe case of endometriosis around Ferrer’s bowels, bladder, and right ureter. She’s been recovering since.
“I’m not great, not perfect, but better,” she said. “I think the most difficult part for me is wrapping my head around what it is and what it means to live with it. I’m back to work and able to go out with friends, but there are still moments when the pain can be difficult to manage both physically and mentally.”
Ferrer hopes her story will benefit others, just as her friend’s did for her. Ferrer also noted four specific points about her journey that could help patients, the first regarding insurance.
“My (Facebook) friend told me to draft a letter and to get a letter from my primary care physician explaining what I had. I gave those letters to my surgeon’s team, which has a department that handles prior authorizations and claims for surgeries,” Ferrer said. “I did go back and forth with my insurance company a week or two before surgery to get clarification on what they needed, and I’m still fighting with them to get it fully covered, but it’s a work in progress. I understand these things take a while.”
The second point is about navigating work with this disease. Ferrer is a patient care technician in an outpatient clinic for autoimmune and rheumatology diseases, a job she’s held for about two and a half years. She missed many days due to her symptoms and said she’s fortunate to have an understanding employer.
“But I also tried to be as transparent with them as possible,” Ferrer said.
The third is for doctors.
“If I could say one thing to all the doctors I saw, it’s to believe your patients when they tell you there’s something wrong,” Ferrer said. “With my OBGYNs, I asked them for more medication, but they wouldn’t do it. I told them I couldn’t work; my life was completely on hold. I wasn’t asking for powerful narcotics, just something to get me through the day, but some doctors thought I was crazy for asking for anything at all. Knowing now that I had endometriosis and given the pain I was in, I wish there were somebody there to say, ‘I get it.’”
The last is to the millions of women worldwide suffering as she did.
“It’s scary not knowing what’s going on, but remember that no matter what anyone tells you, you know your body best. Keep advocating for yourself. If you know something’s wrong, then something’s wrong. Don’t stop until you find what you’re looking for. You’re so much more than the health issue you’re going through. You deserve the best quality of life you can have.”
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
