Gen Z Woman’s Worst Fears Confirmed After 8 Year Struggle for Diagnosis

A woman who endured excruciating period pain since age 14 was finally diagnosed with stage 4 endometriosis eight years later, which had spread across her organs.

Milla Booth (@millaboothh), 22, from South London, U.K., recalls being sent home from school due to heavy menstrual bleeding. Her doctor prescribed the combined pill, a form of birth control to regulate cycles and reduce symptoms like heavy bleeding. However, she continued experiencing severe pain.

“I kept complaining. Even with breaks from the pill, I still had intense breakthrough pain. Eventually, I just accepted it as a fact of life,” Booth told Newsweek.

She posted about her journey on TikTok, where it garnered 89,900 likes and almost 1 million views.

“Getting confirmation of endometriosis after eight years but finding out it’s stage 4, has spread to other organs, you need seven-plus procedures in one surgery and your eggs freezing at 22,” she shared.

At 17, she stopped taking the pill, and doctors suspected endometriosis, a chronic condition where tissue similar to the uterus lining grows outside it, or PCOS (polycystic ovary syndrome). However, she did not identify with PCOS symptoms.

External pelvic ultrasounds showed nothing. Booth later learned that endometriosis can only be definitively diagnosed through laparoscopic surgery. Without answers, she continued her life as the disease progressed.

“I had to plan my life around my period,” Booth said. She relied on strong painkillers but eventually developed symptoms beyond her period, she has even developed abdominal burns from relying on hot water bottles and recently keeled over in pain during an evening out in central London.

Terrified by bowel symptoms, she rushed to A&E after experiencing rectal bleeding. “I thought, ‘Do I have cancer?'” she recalled. Doctors ruled out Crohn’s disease and found no lumps. “I left feeling deflated,” she said.

She also suffered from constipation during her period, kidney issues, frequent urination, and pain before and after ovulation and sex.

After graduating in June 2023, Booth started a job in medical advertising. With only 10 sick days annually, she struggled.

Encouraged by her manager, Booth pursued further medical help. In August 2024, she switched to a company with healthcare coverage for chronic conditions. An internal ultrasound confirmed endometriosis in her right ovary and pelvis.

“I was like, ‘What? So I’m not lying.’ I felt so happy. In a strange way, I thought, ‘I really hope it’s awful just because it would validate everything I’ve been through,'” she said.

An MRI scan revealed stage 3 or 4 endometriosis. Her pelvis had shifted backward, and the condition had spread to her bowel. Doctors advised seeing a multidisciplinary team and discussing fertility options.

A laparoscopy later confirmed the diagnosis. Booth paid for an AMH fertility blood test, which showed she was close to infertility. As a queer woman, she had anticipated IVF but never thought she’d have to consider motherhood at 22.

A gynecologist found her right fallopian tube was tethered. Booth met with a colorectal surgeon and a urologist. The colorectal surgeon apologized for the lack of research on a condition affecting the entire body.

Endometriosis had fused part of her rectosigmoid junction together, this is where the sigmoid colon meets the rectum.

A colonoscopy confirmed the findings, and Booth was scheduled for surgery in January 2025.

“The craziest thing- whilst I am having all these things—I am still having periods and they feel nefarious since I know exactly what is happening—they seem to be getting more painful, and I start throwing up from cocodomol,” Booth added.

The surgery was successful. Her fallopian tube was saved, and her bowel was freed from her womb. Growths around the rectosigmoid junction and kidney area were removed. They also inserted a hormonal coil to try to manage her symptoms.

Despite surgery, endometriosis is a lifelong condition, with a 20-50 percent recurrence rate likelihood within five years, according to Dr. Irene Woo, a board-certified reproductive endocrinologist and infertility specialist in Los Angeles.

“I feel gratitude for being listened to, but my heart breaks that an average diagnosis takes longer than mine, If it weren’t dismissed as ‘just period pain’ and women being dramatic, people would realize how terrible it is,” she said.

Expert Weighs In

Dr. Christopher Kliethermes, a gynecologic surgeon and endometriosis excision specialist in the state of Michigan, notes that the average time for an endometriosis diagnosis has historically been around 10 years, though recent data suggests it may now be closer to eight or nine years.

“There is 100 percent a lack of research. There are likely many, many factors into why. Some top reasons are likely the lack of understanding/education of the disease, the taboo nature of women’s health, the inherent misogyny of medicine, and to a lesser extent, lack of funding dedicated to the disease due to it not being directly life threatening,” he told Newsweek.

Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus, potentially affecting various organs, including the bladder and bowel. Theories on its spread include genetic changes, bloodstream transmission, or retrograde menstruation—when menstrual blood flows backward into the pelvic cavity instead of out of the body.

Woo told Newsweek: “Women’s health is often overlooked or dismissed as ‘just the way it is,’ particularly when it comes to reproductive health. Too often, women are told that their pain is just part of being a woman. But it doesn’t have to be that way. Understanding what is normal—and what isn’t—is crucial in empowering women to advocate for themselves and seek the care they deserve.”

The condition leads to pelvic pain, painful periods, and pain during intercourse, yet its severity does not always correlate with the number of endometriotic implants.

Endometriosis can spread to the ovaries, bladder, and bowel, sometimes forming “chocolate cysts” (endometriomas) and causing adhesions that disrupt organ function.

The only definitive diagnostic method is laparoscopy, during which lesions can be removed and the disease staged based on the depth, location, and type of adhesions.

Fertility is another major concern, as endometriosis can distort reproductive anatomy, impact egg quality, and reduce implantation potential. While surgery can help, ovarian cyst removal may decrease egg reserves.

Social Media Reacts

Booth’s story resonated with many online, though some responses turned competitive over symptom severity, others sought clarity on their condition and many shared similar stories.

“My doctor said she could do a laparoscopy but told me it’s ‘better not to know,’ even though my mom had stage 4 endo and needed a full hysterectomy,” said Kayla.

“Eight months ago, I was diagnosed with stage 4 endometriosis, which had spread to several organs. Speedy recovery!” shared another user.

“They couldn’t see anything on my internal ultrasound, but I don’t know if that means it’s definitely not there. I have so many symptoms and feel like my uterus is stuck to the back of my bowel,” wrote another woman.

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