Endometriosis is a severe, chronic and progressive disease that affects one in 10 women of reproductive age globally. It happens when endometrial tissue grows outside the uterus, usually on the ovaries, fallopian tubes and pelvic lining. This tissue reacts to hormonal cycles, causing internal bleeding, inflammation and scarring. When left undiagnosed or untreated, the disease can spread to other organs like the bladder or bowel and result in infertility or, in severe cases, require the removal of the uterus and ovaries.

In Uganda, many women are led to believe that menstruation cramps, debilitating pain and heavy bleeding are part of being a woman. Yet, the reality is that intense cramps, heavy periods, constant fatigue, gastrointestinal distress, pain during intercourse and the ineffectiveness of nonsteroidal anti-inflammatory drugs (NSAIDs) are the hallmarks of endometriosis.

Absence of a Targeted Health Care Policy

According to Grace Nagawa, Executive Director of the Endometriosis Foundation Uganda, one in seven Ugandan women may have endometriosis. However, there is no government or international data on its prevalence. This absence is not trivial as it prevents precise assessments, targeted allocation of resources and the implementation of proper public health policies. To date, endometriosis remains absent from Ugandan public health legislation. Furthermore, despite the government’s recent increase in the national health budget to more than $1 billion in 2025/26, there is still no dedicated national budget for endometriosis.

This oversight results in limited specialist resources for diagnosis and treatment, which is exacerbated by the low awareness of the condition. Many Ugandan women face years of misdiagnosis, with the first correct diagnosis taking nine to 10 years. This delay often leads to progression to advanced stages of the disease, such as Stage 4, which constitutes the most severe one. Uganda also faces a severe shortage of endometriosis specialists. Following the death of Dr. Kiggundu in 2025, only four specialists remain to treat the condition nationwide, resulting in an unmet demand for care. Critical diagnostic equipment, notably laparoscopes, is also lacking, especially in regional hospitals.

Socioeconomic Repercussions on Women and Girls

The socioeconomic impact of endometriosis in Uganda is huge. Severe pain often disrupts education and employment. According to a 2025 value-for-money audit, around 64% of Ugandan girls miss school due to menstruation. The financial burden of endometriosis is also considerable, as the cost of hormonal treatments and surgery is prohibitive for many.

Laparoscopic surgery, the most effective diagnostic method, can cost more than what most affected women can afford. While wealthier Ugandan women can afford a laparoscopy or receive treatment abroad, notably in Nairobi, the most impoverished are forced to suffer in silence. Chronic pain, delayed diagnoses and disrupted lives also contribute to mental health issues, such as anxiety, depression, isolation and trauma.

Local Efforts: NGOs Are Leading The Fight

Despite these challenges, two Uganda-based NGOs are working to support and empower women and girls affected by endometriosis:

• Endometriosis Foundation Uganda aims to improve health by educating the public and health care professionals through awareness walks and charity marathons. It also partners with health organizations to enhance diagnostic and treatment processes. For example, it organizes training sessions with the Endometriosis Foundation in Kenya, where gynecologists have more expertise, enabling better support for Ugandan women unable to seek treatment abroad.
  The organization also helps women who are economically affected by endometriosis and cannot afford treatment or surgery. Finally, its mission also consists of advocating for better access to health care, timely diagnosis, appropriate treatment and national investment in medical research.

• The Endometriosis Care Center Uganda (ECCU) is a critical NGO established in 2021 and runs four main programs. The Health Promotion Program offers free screening clinics, symptom assessments, treatment options and referrals to endometriosis specialists. The Habitation and Rehabilitation Program provides women and girls with face-to-face therapy sessions, telecounselling and self-help groups to help them cope with chronic pain and the emotional fallout of endometriosis.
  Through the Social Capacity Building and Empowerment Program, ECCU promotes narrative-sharing among women with endometriosis, fostering peer support between women at different stages of their medical journey. This program also provides life-skills development, confidence and talent nurturing to help women and girls return to education and employment after years of illness.
  Finally, through its Lobbying and Advocacy Program, ECCU advocates for recognizing and including endometriosis in the Ministry of Health’s data systems and Ugandan legislation. Finally, it also works toward implementing laws and policies that improve the diagnosis, treatment options and provision of resources for endometriosis in Uganda.

Conclusion

Endometriosis poses a critical health and socioeconomic challenge in Uganda. A significant number of women are affected, often struggling for years with misdiagnosis and untreated symptoms. The Endometriosis Foundation Uganda and the ECCU are working to improve access to health care, awareness and diagnosis and advocate for policy change.

While their efforts are critical to supporting affected women and girls, major gaps remain. There is a pressing need for a comprehensive approach involving the Ugandan government, international organizations and local NGOs. Key issues include the shortage of endometriosis specialists, the high cost of treatment and the lack of targeted health policies and data.

– Juliette Delbarre

Juliette is based in London, UK and focuses on Global Health for The Borgen Project.

Photo: Flickr