My name is Avery, and I am a 22 year old living with Stage 4 Deep Infiltrating Endometriosis II, the most severe, aggressive, and rare form of the disease. Only about 0.05% of people develop endometriosis as advanced as mine. It is consistently ranked as one of the most painful conditions in the world. In 2023, I had two surgeries, but because of how extensive my disease is, neither surgeon was able to remove it all. Over the last few months, endometriosis has spread further throughout my chest cavity and I have begun experiencing symptoms that can become life threatening.

After a long search, I found one of the few surgeons in the country who specializes in cases as complex as mine. I now urgently need a multi organ excision surgery to remove disease from my diaphragm, bowels, ovaries, ligaments, possibly my lungs, and more. I will also have a hysterectomy and a cardiothoracic surgeon operating on both sides of my chest. People with Stage 4 DIE II are at high risk for organ failure, collapsed lungs, heart attacks, ovarian torsion, stroke, and even death.

Right now, I am on opioids or sedatives around the clock. I am bedbound for about 23 hours a day and need help with showering, preparing meals, and getting dressed. I use a wheelchair to leave my home. I have tried every treatment available besides stem cell therapy and chemotherapy, including more than 30 medications. Nothing has helped with preventing my severe pain and other symptoms.

This upcoming surgery is my best chance at relief and at preventing further organ damage. Unfortunately, insurance will not cover it, and we must pay 100% out of pocket for both the excision specialist, cardiothoracic surgeon, and hospital stay. Because this surgery can take 8-12 hours and involves techniques insurance considers experimental, surgeons receive no coverage for performing it.

I am asking for help to make this surgery possible and to pay for the appointments, prescriptions, and other endometriosis related costs before and after surgery. Any donation, no matter the amount, will directly support my chance at getting my life back. If you are unable to donate, please share this post.

Thank you for reading and for supporting me in any way you can.

Why don’t some endometriosis specialists accept insurance?

Surgeons who stay in-network and bill insurance for endometriosis—especially in complex cases—are often limited in what they can do. Because insurance typically only reimburses for short, routine procedures, many in-network surgeons perform quicker, less comprehensive operations that offer little long-term benefit. I’ve experienced this myself with my last surgery.

My upcoming surgery, for example, is expected to take 8–12 hours, but most OB-GYN procedures are only reimbursed by insurance as if they take about an hour. That means the surgeon ends up doing extremely complex work while receiving almost no financial compensation.

When a surgeon is out-of-network, they’re able to set a fee that actually reflects the time, skill, and complexity required. They can also perform additional procedures, thorough exploration, and techniques that true excision specialists rely on—many of which insurance considers “experimental” or “investigational,” meaning they cannot be billed through insurance at all. If they tried, they’d essentially be paid nothing.

So going out-of-network allows the surgeon to practice according to best medical judgement rather than insurance limitations, and ensures they’re adequately compensated for the level of care being provided.