Adanze Benjamin spent the end of 2024 feeling terrible. The lymph nodes in her armpits had swelled to the size of golf balls. Walking up the stairs left her winded. Every inch of her body ached.

“ I literally would wake up in a pool of sweat in my bed, like soaked,” said Benjamin, now 24.

All of her symptoms pointed to lymphoma, a type of cancer that affects the infection-fighting white blood cells in the body. But her biopsy showed no trace of cancer. Instead, she was diagnosed with stage-four lymphatic endometriosis. 

Endometriosis, commonly referred to as endo, is an inflammatory condition that occurs when tissue resembling the uterine lining grows as lesions outside of the uterus. Advancements in the diagnosis and treatment of endometriosis have improved the chronic pain and infertility associated with the condition, but the disease remains understudied, underdiagnosed, and underfunded, leaving some patients to turn to diet as a way to manage their symptoms.

Endometriosis can spread through the body almost like cancer, clinging to organs like the bladder and stomach. When the lesions become inflamed, patients can experience debilitating pain. But it’s not just pain; research has found that people with endometriosis may also face a higher risk of heart disease and ovarian cancer. 

“ Endometriosis is a disease that we don’t understand a lot about,” said Dr. Ashley Davis, an OB-GYN and endometriosis excision specialist based in Atlanta. 

But what experts do know is that the condition is an inflammatory disease.

“There’s tissue that’s not supposed to be there inside the, in general, pelvis,” said Dr. Jessica Opoku-Anane, a minimally invasive gynecologic surgeon at Rutgers Health/Robert Wood Johnson Medical School in New Jersey. “Your body knows it’s not supposed to be there, and it sends out its immune cells to clear out those cells. But those immune cells also secrete inflammatory chemicals that can cause pain, inflammation and scar tissue.”

Common treatment options for endometriosis include laparoscopic excision surgery, which is considered the current standard for stabilizing endometriosis progression, and hormone therapy, which involves taking medications that decrease estrogen levels and increase progesterone levels, Opoku-Anane added. But with limited research, funding, and long waitlists to see surgeons, patients are often left feeling helpless about how to efficiently manage their symptoms. 

“Patients are just searching for something and we don’t have the answers to give them,” Opoku-Anane said.

Addressing an inflammatory disorder

That uncertainty has some patients, like Benjamin, turning to diet to help manage their symptoms, despite a lack of clear evidence of its direct impact on the condition. She documents her endometriosis journey in viral TikTok videos—a journey that has meant changing her diet, exercising, and taking a slew of vitamins. 

In one video, Benjamin stands in a brightly lit kitchen with a row of supplements on the counter, including turmeric, fish oil, magnesium, vitamin D3 and K2, collagen, and inositol.

“Do you take that whole bunch every single day?” I later asked. She nodded yes.

“ The collagen and the lion’s mane I might take every other day,” she said. “But for the most part, yeah, I’m taking 40 supplements, 40 pills, a day.” 

The overall consideration of nutrition as a factor in endometriosis diagnosis and treatment is becoming increasingly common. Research into the possible effects of diet and anti-inflammatory foods on endometriosis symptoms remains scant and is still relatively new.

A 2019 study conducted in Sweden on 12 endometriosis patients found that “the participants experienced decreased symptoms and increased well-being after adopting an individually-adapted diet.”

Opoku-Anane said some supplements, like turmeric, capsaicin (the active component in chili peppers), and ginger, have anti-inflammatory properties. 

“ Endometriosis is very much an inflammatory disorder [and] that research is clear,” said Opoku-Anane. “In my practice, I offer an anti-inflammatory diet to every patient, and I do see a lot of patients do have improvement. This is just from my experience, not data, because we don’t have the resources to confirm it.” 

Feeding the fight

Some patients might turn to nutrition experts to help alleviate symptoms. Alexis Brooks, a reproductive health dietitian based in Maryland, helps clients with endometriosis, among other health issues.

Brooks said her process starts with “ a full intake.” She said she reviews everything: medical history, supplements, medications, lifestyle, fitness, sleep schedule, and menstrual cycle. Overwhelmingly, Brooks finds that most patients with endometriosis are undernourished.

 “The biggest macronutrient that’s missed is protein,” she said, as well as magnesium, potassium, zinc, selenium, and iron. 

As a specialist who curates personalized eating guides, Brooks often finds herself frustrated by generic endometriosis diet advice that circulates in online communities and groups. She finds that they tend to neglect the individual experience and lump everyone with the condition together, often suggesting restrictive diets or pushing all patients to cut out foods unnecessarily. 

Restrictive diets may be of particular harm to endometriosis patients, who have been found to have a higher risk of eating disorders than the general population. 

“My philosophy is: We should be able to eat as many things as possible that work with our bodies,” said Brooks. “So I don’t ever want to restrict anything that works for someone’s body.”

Culturally competent care

Nyquana Manning, who is in her early 40s, uses Mediterranean-style food habits to help manage her endometriosis. She focuses on getting in salmon, greens, and chickpeas, while avoiding fried or processed foods, which she has noticed worsen her endo symptoms. 

Manning said has a wall full of herbs at home that she frequently replenishes with trips to the botanical store, and she uses different blends to brew anti-inflammatory teas. It’s a practice that closely touches her heritage and roots. 

“I’m half Black, half Honduran,” she said. “There are medicine women in my family. So me learning about herbs is really an ancestral path.”

Manning’s endometriosis journey started when she was experiencing heavy and painful periods in 2018. Before being diagnosed, she saw a doctor who attributed her pain to age, Manning said. 

It wasn’t until 2023 that she was diagnosed with endometriosis and uterine fibroids, which are noncancerous growths found in the uterus. Her doctor prescribed her progesterone, which stopped her period entirely. To Manning, something was wrong.

“I didn’t like the way it made my body feel,” she said.

Manning then asked her OB-GYN if holistic treatment options existed. 

They ran blood tests to evaluate her hormone levels, and then curated a treatment plan that included nutrition and supplements targeted to her specific needs. She regularly assesses how her body feels and whether her symptoms change based on the foods and herbs she consumes. 

Striking a balance

Not all patients who want to manage their endometriosis with hormones and surgery are able to, according to Opoku-Anane. Some have progesterone-resistant endometriosis, meaning hormonal medication will not work for them. Others cannot take the medication because they are trying to get pregnant. There are also patients who have undergone multiple surgeries, and who have developed scar tissue or nerve pain, Opoku-Anane added.

She said that she is a proponent of excision surgery for patients who require it, but also that anti-inflammatory diet changes are an option for long-term symptom management. Opoku-Anane added that she has noticed some of her own patients benefit clinically from it. 

“A lot of us are thinking about a more holistic approach to care that includes integrative medicine, largely because it’s very clear that endometriosis is no longer a pelvic disorder,” said Opoku-Anane. “It’s really a whole-body systemic disorder.” 

Opoku-Anane recommended patients consider taking a comprehensive approach to their care by seeing a team of specialists. According to Opoku-Anane, multidisciplinary medical centers with integrative endometriosis care—for example, ones that address endometriosis through surgery, nutrition, acupuncture, and pelvic floor therapy—can help patients with a variety of symptoms better treat their condition by using both traditional and holistic approaches. 

But not all patients can access that kind of comprehensive care. 

Manning said it was a daunting process to find a care team that would listen to her. She said she’s had to switch physicians multiple times until she felt that she was in the right hands. 

 ”It was important for me to make sure that I am amongst the team of people that will listen to me [and] will hear me,” Manning said. 

“I’ve been intentional with finding physicians that are like that,” she added.

Opoku-Anane, who currently works at Rutgers University’s hospital system and previously built the Endometriosis and Chronic Pain Pelvic Center at Columbia University’s Irving Medical Center, said that the advantage of academic medicine is that multiple forms of care are available within the same institution already. 

“A patient can just make an appointment and see multiple providers that are at the very same center together,” Opoku-Anane said. “I think that that’s gonna be the future of [endometriosis] care.”