Farah Mohamed, a 32-year-old project manager, had always assumed that the excruciating pain of menstruation was a universal experience for women. It was not until she fell to her knees in pain and sought medical care in 2023 that she learned that her intense discomfort was not a normal part of the menstrual cycle, but rather a painful symptom of endometriosis.
Also known as uterine lining migration, endometriosis is a chronic inflammatory illness whose cause remains unknown, with no known means of prevention or cure, according to the World Health Organization (WHO). It is also characterized by debilitating pain that can occur during menstruation, sexual intercourse, bowel movements, and urination.
“Endometriosis is a condition where tissue similar to the lining inside the uterus, which normally builds up and sheds during a period, starts growing outside the uterus,” Abdallah Fayed, an obstetrician-gynecologist (OB-GYN), explained to Egyptian Streets. “This tissue can end up on the ovaries, fallopian tubes, or even areas like the bladder or intestines.”
Endometriosis affects one in ten women worldwide of reproductive age, between puberty and 50 years old, which translates to around 190 million women, according to WHO. While it affects an estimated six to 10 percent of women worldwide, determining the prevalence of endometriosis in Egypt remains challenging due to a lack of documentation, according to a 2018 study by Menoufia University Hospital.
“What makes endometriosis painful is that this tissue still behaves like it’s in the uterus, thickening, breaking down, and bleeding with each menstrual cycle. However, because it’s outside the uterus, it has nowhere to go,” Fayed said.
Patients often experience symptoms such as chronic pelvic pain, abdominal bloating, nausea, and fatigue. According to Fayed, endometriosis can affect nearby organs over time, often causing pain beyond the menstrual cycle. In some cases, if left untreated, it can also lead to fertility challenges in some cases, complicating efforts to conceive.
When Farah first experienced heavy bleeding and pain, her doctor diagnosed her with a tumor in the ovaries without running any tests or an ultrasound—a diagnosis that she took with a grain of salt.
Another doctor diagnosed her with uterine cysts, which are benign fluid sacs that develop when the uterine lining is not fully expelled during the menstrual cycle.
“After that, I lived with the pain for two years, waiting for the cyst to disappear on its own like my doctor suggested,” Farah noted.
According to a 2024 survey conducted at the Women’s Health Hospital at the University of Assiut, Egyptian women face considerable delays in diagnosis due to symptom variability and limited awareness among healthcare providers, with an average diagnostic delay of 36 months. Factors such as age, the stage of the disease, and the presence of ongoing pain also contribute to the prolonged diagnosis.
Endometriosis can mimic other conditions, like irritable bowel syndrome (IBS) or pelvic inflammatory disease, making it challenging for doctors to identify immediately, according to Fayed.
“One time, I had horrendous pain and I couldn’t stand up straight, or sit or lie down,” Farah shared. “So I went back to the doctor.”
After an ultrasound and a magnetic resonance imaging (MRI), she was diagnosed with endometriosis. Her doctor prescribed her painkillers to manage the pain, and hormonal medications as treatment.
“Treatment options available for endometriosis are pain relievers and hormonal treatments,” Fayed said. Hormonal treatments include birth control pills, hormonal (Intrauterine Devices) IUDs, and Gonadotropin-Releasing Hormone (GnRH) agonists, which reduce or stop the menstrual cycle, slowing the growth of endometrial tissue.
However, for patients experiencing severe pain or difficulty conceiving, surgery may be a viable option, according to Fayed.
“Through laparoscopy, which is minimally invasive surgery, we can locate and remove or burn away endometrial tissue to relieve pain and potentially improve fertility,” Fayed told Egyptian Streets, noting that the biggest challenge is that the tissue can re-grow over time, putting the patient back in the same situation.
Safa Adel, a 29-year-old banker, suffered that fate after a five-year struggle with endometriosis.
“I am living in constant pain and unpredictable bleeding,” Safa shared, noting that she uses painkillers often and medication to control the bleeding. “Due to the disease, along with the medications, I got anemia and rely on vitamins and supplements.”
Women with advanced endometriosis reported significantly poorer physical health and functioning compared to those with mild endometriosis and compared to women without endometriosis, according to the 2024 survey.
Like many endometriosis patients, Safa experienced horrible pre-period pain all her life. At the age of 24, she went to an OB-GYN. Her doctor suspected uterine cysts, “even though they do not cause such excruciating pain,” she clarified.
Yet, after an ultrasound, she was diagnosed with uterine cysts. She was put on hormonal medications, often used for contraception, but to no avail.
“I gained a lot of weight, struggled mentally and emotionally, and was in pain nonetheless,” she said.
In the same year, she sought the opinion of another doctor, who diagnosed her with endometriosis after an MRI and recommended additional tests including a tumor marker test— a test used to rule out the presence of cancers.
“It was the first time I ever heard of the disease,” Safa said.
Over the course of two years, her doctor prescribed various medications, but none alleviated the pain or affected her menstrual cycle or the tumor’s size.
“Eventually, my doctor referred me to a specialist for a laparoscopy, and I had it in 2022,” she said, adding that she thought the surgery was a final and permanent solution – one not informed that endometriosis is a chronic condition, with the potential for the tissue to regrow.
While the endometrial tissue grew back, it has not grown larger than what was removed. Along with pain medications, her doctor put her on Zoladex, a medicine used in the management of endometriosis pain and reducing lesions.
According to Safa, she took Zoladex on a quarter basis and it stopped her menstrual cycle and weakened her bones and teeth. Her doctor suggested the final resolution of removing her uterus after having children.
“No one understands the pain I go through or the damage the disease does to me,” Safa shared, emphasizing that most people do not even know about the disease and the urgent need for awareness.
Safa said that the lack of awareness is isolating and exhausting. She can not even take a sick leave from work when she feels tired, without explaining what it is.
“It still won’t compare to heart disease or a broken leg,” she stated.
Farah echoed Safa’s thoughts, saying that the pain, debilitating and sudden, could hit at the worst of times and no one around her would know. It could stop her from doing the most mundane things, such as work, sleep, or even finishing a chore as simple as washing dishes, and her reasons would not be understood.
The diagnosis of endometriosis remains one of the most important and biggest challenges that patients face. According to WHO, early diagnosis and effective treatment are crucial, yet access remains limited, especially in low- and middle-income countries.
“Awareness among both women and some healthcare providers about endometriosis in Egypt is limited and still developing,” Fayed told Egyptian Streets, noting that women might not recognize that their pain is abnormal, and doctors could misattribute the symptoms to other conditions or see it as “bad period pain.”
“My daily pain should not be normal, and women’s symptoms need to be taken seriously,” Safa said.
Cultural factors, like discomfort discussing menstrual or pelvic pain, can prevent women from seeking help early, which delays diagnosis, according to Fayed.
Financial barriers also impact access to diagnostic tests for endometriosis, such as laparoscopy, which can be expensive and often inaccessible, particularly in rural regions. While awareness is gradually rising in major cities and academia, a significant gap in knowledge and understanding remains across the healthcare system.
The 2024 survey emphasized the need for specialized endometriosis centers in Egypt, educational initiatives to spread awareness, and support groups to address the needs of these women and improve their quality of life.
“Lifestyle changes, like exercise and diet, and counseling also help some manage daily impacts. Often, a mix of treatments works best,” according to Fayed.
For Farah, the only way to cope with endometriosis is to accept it, accept that there is no cure and that she might not be able to have children.
Endometriosis, though a silent affliction for too many, disrupts countless lives, forcing women to navigate the constant pain, uncertainty, and isolation that comes with a lack of awareness.
(Except for the headline, this story has not been edited by PostX News and is published from a syndicated feed.)
