- Gigi Robinson, who lives with multiple chronic conditions, was one of the Sports Illustrated 2022 swimsuit models.
- Robinson used the platform to raise awareness about Ehlers-Danlos syndromes, endometriosis, and other chronic conditions.
- Endometriosis affects an estimated 200 million women worldwide and approximately one in 10 women in the U.S.
When Gigi Robinson got a call from Sports Illustrated in February 2022 notifying her that she was a finalist in its Swim Search, she was ecstatic.
Robinson is the first GenZ and chronically ill woman to be featured in the magazine. As a passionate patient advocate for those living with chronic conditions, she embraced the platform.
“I thought if I do this, it’s not going to be about anything other than elevating the patient voice,” she told Healthline. “I was using my body as the vehicle for change and wanted to make it clear that you don’t need to change anything about yourself to be celebrated and that you’re beautiful just as you are whether you have bruises or stretch marks or scars.”
As a child, Robinson bruised easily and suffered injuries caused by typically harmless activities.
“I . . . tore ligaments jumping off a trampoline at summer camp, and I shattered ligaments in my wrist and fractured my elbow doing a cartwheel,” she said. “Very strange, simple things were injuring me.”
After several visits to the emergency room at New York Presbyterian Hospital, a pediatric orthopedic doctor suggested Robinson visit the orthopedic and rheumatology unit.
“My mom, who worked in healthcare, found an amazing pediatric orthopedic doctor who thought I may have a mobility syndrome,” said Robinson.
At 11 years old, she was diagnosed with Ehlers-Danlos syndrome (EDS), a heritable connective tissue disorder that causes joint hypermobility, skin hyperextensibility, and tissue fragility.
“Because it had not been researched 15 years ago, my mom did everything she could to go to different webinars and seminars that were put on by the EDS Society and through hospitals…but I was still in pain and there isn’t a cure or treatment for it,” said Robinson.
To manage symptoms, she tried physical therapy, which provided short-term relief, and medication, which she stopped taking due to negative effects on her liver.
Around this time, after her first period, she also began experiencing migraine attacks, lower back pain, and GI issues— what she would learn years later are symptoms of endometriosis, a condition in which cells similar to the lining of the uterus or womb, grow outside the uterus and womb.
“[It] was mind over matter. Go, go, go, and in a way that was a toxic mindset when dealing with health issues,” she said.
Relief and frustration with an endometriosis diagnosis
In 2017, Robinson ventured off to the University of Southern California, where she put her health aside and kept up with a “push through and move on” mentality to focus on school.
However, when COVID-19 hit, she found herself back home in New York City, where she decided to seek out pain management treatment. Acupuncture worked temporarily, steroid injections provided no relief, and she reaped the most benefits from the medication Lyrica.
“But I still had lower back pain, so the doctor suggested I get a diagnostic laparoscopy to see if I have endometriosis,” said Robinson.
In December 2022, she underwent the surgery, which confirmed she had endometriosis.
During surgery, they removed endometriosis implants and inserted a hormonal intrauterine device (IUD) to alleviate symptoms.
“It’s almost like my life is transformed. I’m able to do things I couldn’t before without pain,” said Robinson.
Still, she said it’s upsetting that it took 13 years to figure out that endometriosis was behind much of her discomfort.
“That’s more than half of my life at 24, so it’s frustrating, but at the same time, I’m joyful…I feel like I’m a caterpillar in a chrysalis and I’m emerging as a butterfly,” said Robinson.
Why endometriosis is difficult to diagnose
Dr. Jonathan H. Reinstine, a gynecologist at Associates in Obstetrics & Gynecology, a part of Norton Women’s Care, said diagnostic laparoscopy is required to make the diagnosis of endometriosis.
“Many physicians, including me, prefer to have a tissue diagnosis from a biopsy of suspicious tissues,” he told Healthline. “At this point in time, there is not a blood test or imaging study that can confidently diagnose endometriosis.”
A misperception is that endometriosis can be detected on ultrasound or other imaging modalities, he added.
“A type of uterine biopsy called an endometrial biopsy has nothing to do with endometriosis,” said Reinstine.
The lack of screening tools makes diagnosing endometriosis difficult. Many women like Robinson, may go on for years experiencing unexplained symptoms, such as:
- GI issues
- Lower back pain
- Abnormal periods
- Painful periods
- Painful intercourse
- Infertility (although most endometriosis patients have successful pregnancies)
“These are symptoms that women without endometriosis can also experience…it doesn’t necessarily mean that you have endometriosis if you have some of these symptoms,” Dr. Jennifer Wu, OB/GYN at Lenox Hill Hospital, told Healthline. “So that’s also what makes diagnosis a little difficult.”
Plus, undergoing surgery to get a definitive diagnosis can feel drastic to some patients and even minor surgeries come with risk, Wu added.
In these cases, physicians may treat endometriosis presumptively and depending on a patient’s age give them therapies, such as low dose oral contraceptives, an IUD, other hormonal therapies that provide long-acting progesterone medication, painkillers, such as nonsteroidal anti-inflammatory drugs (NSAIDs), or hormone (GnRH) therapy (for patients who are nearing menopause).
“If they get better, it’s probably endometriosis, but to definitively diagnose you usually need surgery,” said Wu.
When women say they have a delay in diagnosis, she said the reason it can take years is “because you’re weighing all the risks and benefits of surgery.”
Spreading confidence for those with chronic illness
Robinson plans to keep sharing her story to advocate for others living with chronic health conditions.
“Chronic illness in general is something that looks different for everybody and can be really dynamic, so one day you can be completely fine and look fine and the next day you can be wrecked and need a lot of help,” she said.
While it can be challenging to give yourself grace, ask for help, and set boundaries with family and friends, Robinson said these are things she learned to do with confidence as she navigates her 20s.
“It’s really hard at times with friends and relationships and being with people who don’t understand what it means to have a health issue,” she said.
However, explaining your situation and being firm on your boundaries can help others understand, Robinson added.
Finding outlets and activities that bring you joy on your terms can also help you cope.
For instance, when Robinson was diagnosed with EDS as a kid, she had to give up competitive swimming. To fill her time, she developed a love for photography.
“I looked to Yu Tsai, one of the most famous fashion photographers out there, and he was the one doing the photo shoot for Sports Illustrated,” she said. “It was so full circle for me. I know the photo helped to inspire so many young and grown women around the world . . . And it’s so fulfilling to be able to do that.”
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