My name is Katherine Berkoh, I have been living with Endometriosis for 21 years. I am an advocate for Endometriosis and Founder of Endo Charity, and a member of the Ghana NCD Alliance.

I'm sharing my story in hopes of changing the negative narratives, myths, stigma surrounding menses and Endometriosis. I decided to be the voice of the voiceless to create the awareness needed and give hope to women suffering in silence.

Visual Diary

21 January 2022

Endometriosis: misunderstood, misdiagnosed and mistreated

For 21 years I have been living with endometriosis, which occurs when tissue similar to the lining of the uterus grows outside the uterus, causing debilitating pain and/or infertility. It takes on average 7 to 10 years to be diagnosed, yet I was misdiagnosed for 11 years. In 1989, when I started seeking an explanation for my excruciating pain, there was no laparoscopy available in Ghana. Laparoscopy is the best way to diagnose endometriosis, although it’s rarely available and costs between $1700 - $5000. The delays resulted in my Stage IV diagnosis, which finally occurred after I was rushed to A&E while visiting my family in London.

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Endometriosis an invisible illness, one of the most misunderstood, misdiagnosed and mistreated conditions, contributing to an increased risk of depression. I was suicidal at a point when I got paralysis in my left leg at the age of 25 as a result of severe endometriosis.

Visual Diary

21 January 2022

The burden of funding this excruciation condition

My endometriosis journey within the Ghanaian health system has been very expensive, as endometriosis care is not covered by medical insurance. My monthly treatment costs are on average $350 - $500. To afford this, I have had to secure loans, both for managing the condition and also for the eight surgeries I have undergone. Each surgery costs on average $2,500 - $4000. There is a significant ignorance and misconception about NCDs, and endometriosis is barely recognized because menstrual pain is tagged as normal; thus there is a lack of financial support from the government.

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This image captures part of my long journey with undergoing surgery for endometriosis. Apart from having to deal with painful symptoms daily, I must face a significant financial burden due to these surgeries and to treatment costs.

Visual Diary

21 January 2022

Amplifying my voice to give Endo Warriors hope

My advocacy has connected me to a lot of 'endo warriors' and has inspired women to come out and seek help. A key challenge faced by this community is the lack of affordability of diagnostic services, as the cost of laparoscopy is high and not offered through national health insurance. Countless women I have met rely on pain killers, as they cannot afford diagnosis. Although a scan is less expensive than a laparoscopy, it is not as accurate and is still too expensive for many people that are not covered by health insurance.

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Through my goal to be a voice of the voiceless, I have created platforms to reach out to women that are facing challenges in silence. As much as I would like to share a wider Endo Community, currently 90% shy away because of stigma, so we are aiming to create awareness that would change the narrative. We wear yellow during our advocacy activities, as yellow is the colour that represents the endometriosis movement.

Visual Diary

21 January 2022

National health insurance and out-of-pocket payments

Since joining Ghana NCD Alliance, I’ve learned the importance of uniting over common goals, as treatment and management are also very difficult for other people living with NCDs. The chronic nature of NCDs and the costs associated with long-term care can result in catastrophic health expenditure, pushing households deep into poverty. I met a gentleman living with diabetes, who refused the NHIS since his medications are not on the exemption list, and laboratory tests must be paid out-of-pocket. An elderly woman who suffered a stroke shares the same issues and is also unable to afford healthy foods, which makes her condition worse. We demand action from decision‑makers to address these critical challenges.

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The above shows some receipts for my out-of-pocket payments. I have had to continue treatment at a private hospital in order to receive the care that I need for my condition. Like my fellow people living with NCDs that have access to medical insurance, I was also told that all of my medications, as well as my regular scans, are not on the exemption list.

Visual Diary

21 January 2022

People Living With NCDs much be considered by policymakers in our health system

I call on the Ministries of Education, Gender and Health and on the government of Ghana to:

  • Launch public awareness campaigns in schools and communities to combat NCD stigma.
  • Implement robust financing structures to move towards UHC. When people have to pay most of their health service ;costs out of their own pockets, the poor are often unable to obtain many of the services they need.

We hope for a future without delayed diagnosis, high treatments costs, and lack of treatment options. Ghana needs proper integration of all NCDs into UHC.

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This photo captures a scene at a radio station to create awareness on NCDs. I am very passionate about giving a voice and platform for other people living with NCDs, and believe we must work together collectively to push for change.

NCD Diaries


As an advocate and a person living with NCDs for 21 years, it is my mission to be the voice of the voiceless to create the awareness needed and give hope to women suffering in silence. I share my story in the hope of driving action on breaking the stigma and improving affordability of care for people living with endometriosis and NCDs in Ghana.

Katherine Berkoh, lived experience of endometriosis, Ghana

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The NCD Diaries use rich and immersive multimedia approaches to share lived experiences to drive change, using a public narrative framework.

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