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SI Swim Search Finalist Gigi Robinson Opens Up About Her Experience With Endometriosis

The chronic illness advocate suffered from lower back pain for more than a decade before her diagnosis. A few months post-op, she’s feeling better and more confident than ever.

Ananya Panchal

Gigi Robinson.

Gigi Robinson.

Gigi Robinson had been experiencing abnormal pain for more than a decade, but it wasn’t until she went through a laparoscopy at the end of last year that she was diagnosed with Stage 2 endometriosis. And it wasn’t as if Robinson had shied away from visiting a doctor—she suffers from a number of chronic illnesses and the 2022 SI Swim Search finalist has used her growing platform for patient advocacy for years.

“I had lower back pain and pelvic pain literally since I got my period at age 11—which was also around the time of my Ehlers Danlos syndrome diagnosis,” the 24-year-old says. “I started seeing this pain management doctor who had a roster of like, ‘how can we get Gigi to feel and be her best based on a pain management scale’ because pain is perception. So we had a whole list: A, A1, A2, B, B1, B2 and so on and so forth. I think we got to step C and my doctor [said], ‘I suspect that this could be hormonal.’”

Ehlers-Danlos syndrome (EDS) is an inheritable disorder that affects the connective tissues and can cause causes joint hypermobility, skin hyperextensibility and tissue fragility.

Robinson felt baffled by the fact that it took until the summer of 2021 for a doctor to consider that her pain could be internal. After getting herself onto a 10-month waiting list to see a female endometriosis specialist who had experience treating people with EDS, she was diagnosed with Stage 2 endometriosis.

“It explained a lot,” she says. “Over the past month, I’ve been almost euphoric with the news because I can live life. I didn’t realize how much that inflammation on the inside was causing my body to be inflamed everywhere.”

During the surgery, doctors were able to remove endometriosis implants and insert a hormonal IUD to help with pain. Endometriosis, a disorder in which the endometrial tissue grows outside of the uterus, impacts 10% of reproductive-age women.

Directly after her diagnosis, the New York native felt both frustrated and relieved by her diagnosis. It provided reasoning for 13 years of seemingly inexplicable pain, but Robinson says it also felt like, “Seriously? Another [diagnosis]? Couldn’t it just be the one?”

Robinson, who received her Masters of Science, Design, Business and Technology from USC, adds that she reminded herself that her feelings were valid—she had been through a lot but she was grateful to have the information and be able to “help doctors help” her better going forward.

“That is the part where I see hope and calmness and joy almost,” she says. “I have control of my body for once because I now know what different times of the month are going to cause my body to feel a certain way and therefore I can prepare. I was [previously] in such a state of, ‘What the f--- is going on with my body?’”

Before her diagnosis, the Gigi LLC founder was attending almost five appointments a week, sometimes seeing multiple doctors a day. Today, she is able to “finally just breathe.”

She is allowing herself to feel all the emotions deeply and enjoy the fact that she is able to do small activities like go for walks, attend a Pilates class and actually have the “urge to exercise.”

Robinson encourages women to trust their gut and see a doctor the moment they think something is wrong, including any pelvic or abdominal issues, repeated pain during intercourse or even an irregular menstrual cycle. She’s proud to admit that these issues and topics are not as taboo—within the health sphere as well as in her personal life—as they used to be, though there is still room for growth.

“If it was physical, if I was growing different spots or [had] swelling in different areas of my body, it would be looked at immediately [by a doctor],” the Everything You Need is Within podcast host continued. “That’s my entire mission—raising awareness for invisible forms of health issues and disability allyship. It’s frustrating that that’s the case and that’s why I wont stop.”

Robinson is excited for the year ahead. She has a children’s book coming out next month and has been busy speaking on various panels and podcasts about her experience with endometriosis and advocating for women’s health.

She has learned to speak up for herself at her doctor’s visits and in her personal life, like when she needs something as simple as for a partner to walk a little slower.

“If I just have the confidence, a diagnosis is a part of me, but it doesn’t define me,” she finishes. “Gigi Robinson is not just a public speaker, nor just a patient. I’m so much more than that and I think that that’s really important for everyone to remember.”

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Ananya Panchal

ANANYA PANCHAL

Ananya Panchal is a NYC-based Lifestyle & Trending News writer at SI Swimsuit. Before joining the Swim team, the Boston University Alum worked for culture & entertainment beats at Bustle, The San Francisco Chronicle and the TODAY Show. When Ananya is not writing or doom-scrolling on social media, she can be found playing sudoku, rewatching One Tree Hill or trying new restaurants. She's also a coffee and chocolate (separately) enthusiast.