For Arti Shah, the journey through endometriosis has been one of immense pain, struggle, and resilience. As she reflects on the thirty years she has lived with the condition, her message is clear and urgent: “Period pain is not normal.” These were the words that opened a deeply personal story of suffering and strength, of delayed diagnoses, and of the determination to reclaim her life and help others do the same. Arti’s experience began at the age of 13 when her menstrual cycles brought not only intense cramps but also nausea, fatigue, depression, and debilitating pain that spread beyond her pelvic area. These symptoms persisted, escalating over the years into chronic pain and digestive issues so severe that daily tasks became a challenge. For over a decade, she was misdiagnosed and dismissed by doctors, leaving her to battle a silent and invisible enemy without knowing its name—endometriosis.
Endometriosis occurs when tissue similar to the lining of the uterus grows outside of it, leading to inflammation, scarring, and often, fertility issues. It commonly affects the ovaries, fallopian tubes, and pelvic tissue. As the misplaced tissue breaks down and bleeds with each menstrual cycle but has nowhere to go, the resulting inflammation causes pain and can lead to complications such as organ fusion. Arti’s battle to get a proper diagnosis took 12 long years, filled with countless doctor visits and treatments aimed at suppressing estrogen, yet her suffering continued. It was only after undergoing multiple surgeries—including a critical excision surgery performed abroad—that she found some relief, though the disease eventually returned. Compounding her struggles, she was later diagnosed with adenomyosis, a similar condition where the uterine lining invades the muscle wall of the uterus.
By December 2024, Arti underwent major surgery in Kenya, where doctors discovered extensive endometriosis recurrence that affected her ureter, intestines, ovaries, and had caused organs to fuse. Even now, she continues to manage complications such as neuropathy and irritable bowel syndrome. Yet, she remains determined to recover and to use her story as a platform for advocacy and education, ensuring others do not endure the same delays and misunderstandings.
Dr. Yamal Patel, a consultant obstetrician and gynecologist at 3rd Park Hospital, explains that endometriosis is not life-threatening but behaves aggressively, causing chronic issues and deeply affecting quality of life. He emphasizes that endometriosis can begin at puberty and persist until menopause, often going undiagnosed for 7 to 10 years. Globally, about 190 million women and girls suffer from this condition, with an estimated 2 million women affected in Kenya alone. Early diagnosis is essential, and modern tools such as ultrasound and MRI, when used by trained professionals, can be highly effective in identifying endometriosis. Treatment varies based on the patient’s goals and may involve medical, surgical, lifestyle, or complementary approaches.
There are numerous misconceptions surrounding endometriosis, including the belief that pregnancy cures it, or that pain during periods is normal. Dr. Patel stresses that pain should never be dismissed and that every woman, including those with endometriosis, should have the opportunity to conceive if properly diagnosed and treated. In some cases, fertility treatments or IVF may be needed, but the possibility of pregnancy should never be ruled out.
Arti Shah’s advocacy now focuses on raising awareness and improving access to care. She works with organizations like Endo Sisters East Africa and Yellow Endo Flower, fighting to ensure that future generations do not have to suffer in silence. She believes that education about endometriosis must start early in schools, workplaces, and within the medical community to dismantle the stigma and delays associated with the disease. Through her voice, she hopes to bring about a future where no woman is denied the chance to become a mother due to ignorance or neglect.
