Endometriosis, Ehlers-Danlos, and Her Long Road to Answers

As a child, Gigi was constantly getting injured—sprains, bruises, and strange aches that seemed to happen too easily. By her teenage years, those symptoms were joined by deep fatigue and pain that came and went in cycles. But it would take more than a decade, multiple specialists, and a lot of self-advocacy to be diagnosed with both hypermobile Ehlers-Danlos syndrome (hEDS) and endometriosis.

“I was constantly getting injured,” Robinson says. “Luckily, I lived in New York City and had access to some really amazing doctors.” One ER doctor referred her to a pediatric orthopedist at the Hospital for Special Surgery (HSS), who suspected Ehlers-Danlos syndrome. That led her to a geneticist who confirmed the diagnosis. “For hypermobile Ehlers-Danlos, there’s supposedly no genetic test. It’s just based on physical markers, and I guess I fell into it.”

She was only 10 at the time. “I don’t think my parents had heard of it either,” she says. “But my mom works in healthcare, so she started going to talks with doctors explaining how to manage life with EDS.”

Cyclical Pain, Chronic Fatigue, and the Missed Signs of Endometriosis

While hEDS explained many of her symptoms, it didn’t explain everything. Through her teens and early twenties, Robinson struggled with unrelenting fatigue and pain. “I started to feel a lot more chronic pain, chronic fatigue, and cyclical pain,” she says. “No one really thought of endometriosis.”

It wasn’t until after college, during the COVID-19 pandemic, that Robinson began seeing a pain management specialist at Columbia University. She tried steroid injections, acupuncture, massage therapy, and various medications, but nothing provided lasting relief. After two years, her doctor recommended a diagnostic laparoscopy to look for endometriosis.

“Everything looked fine for the most part, but I was still in pain.”

At first, Robinson hesitated. “It took me a year and a half to even schedule the surgery,” she says. “It’s really a challenging thing to grapple with—do I want to have surgery when there’s a 10% chance I have this?”

But her symptoms continued to intensify—cyclical migraines with aura, unexplained gastrointestinal issues, and severe lower back pain. “GI doctors couldn’t figure it out,” she says. “Everything looked fine for the most part, but I was still in pain.”

Ultimately, she decided to go through with the procedure.

Choosing Surgery and Navigating the Decision-Making Process

Robinson consulted with three doctors before moving forward with surgery. “I think it’s very important to see at least two doctors and get second opinions,” she says. “A lot of people living with EDS have multiple doctors on their care team—gastroenterologists, neurologists, rheumatologists—so I made sure to ask all of them before deciding.”

She underwent excision surgery, the gold standard for treating endometriosis. “I believe it was one path for me,” she says. “My doctor is an expert and I trusted her. But I do think it's just as much on the patient to ask questions and advocate for themselves as it is on the doctor to inform them.”

The surgery was laparoscopic, with four to five small incisions made in her abdomen. “They fill your cavity up with gas so they can look around,” she explains. “Then they excise the areas where they see endometriosis.”

Recovery, Pain Triggers, and Lifestyle Changes

Robinson says the recovery was “extremely painful.” It took about eight weeks before she started to feel better. “It wasn’t the incisions—it was the internal pain. The gas leaving your body is the worst pain ever,” she says.

She also noticed that certain foods and drinks triggered new symptoms after surgery. “If they’ve excised endometriosis on your bowel or bladder, drinking soda or caffeine or anything acidic is like squeezing lemon juice on an open wound,” she explains. “It’s very painful.”

Still, she noticed a major shift post-surgery. “I used to not understand why people exercised—it was so painful. But after the surgery, I started feeling endorphins when I moved my body. That changed everything for me.”

The Role of Diet, Breath Work, and Self-Hypnosis

In addition to surgery, Robinson credits her recovery to lifestyle adjustments. “I was vegan and gluten-free for the first two years after surgery. It helped reduce inflammation and was easier on my digestive system,” she says.

Her approach to food is intentional but flexible. “I’m not on a diet—I eat for my health, my longevity, and my productivity,” she says. “It’s trial and error. If I eat gluten, I’ll feel inflamed. If I drink soda, my bladder might hurt.”

She’s also incorporated breath work and self-hypnosis into her routine. “Breath work has been something I’ve been working with for a while,” she says. “I actually released an endometriosis protocol with Dr. David Spiegel at Stanford. It’s a self-hypnosis for pain management.”

During one session, Robinson was able to lower her pain from a six to almost zero. “It’s not that the pain isn’t there—it’s that you’re focusing your brain in a different way,” she says. “It’s just another tool in the toolbox, like acupuncture or physical therapy.”

Individualized Care and Advocacy

Robinson is clear that what worked for her might not work for everyone. “Health is so individual,” she says. “Just because I live with endo and eat a certain way doesn’t mean someone else with endo will have the same experience.”

Her biggest advice is to advocate for yourself and your care. “Ask your doctor what kind of surgery they’re doing. Ask about recovery. Have a plan,” she says. “Try everything. Until you try it, you don’t know what might help.”

For those feeling dismissed or disbelieved, she offers this: “Keep pushing. Ask for peer-to-peer reviews so your insurance might cover treatments. Talk to your care team. And surround yourself with people who support you.”

Robinson has also published a children's book book based on her experiences to help others feel less alone in their health struggles.