Welcome To The Centre For Endometriosis Care Uganda

Endometriosis care centre Uganda (ECCU) is a Ugandan based Non-government Organization focused on women and girls living with endometriosis.

What is Endometriosis

It is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus.

Symptoms

The primary symptom of endometriosis is pelvic pain, often associated with menstrual periods.

Join Us Today In Our Cause

We advocate for the right to health for women and girls with endometriosis through promoting improved treatment options for girls and women suffering from endometriosis.

What We Do

About Endometriosis Care Centre Uganda

Endometriosis care centre Uganda (ECCU) is a Ugandan based Non-government Organization focused on women and girls living with endometriosis. The organization was established in 2021 to address endometriosis related issues among women and girls of reproductive age that have for long been adversely deterring their advancement, transformation and full .participation in society. The organization aims to tackle the complex and multifactorial challenges of endometriosis through harnessing the strengths of multidisciplinary collaborations. . ECCU is mandated to operate in all the regions of Uganda. Our main offices are however located in Kampala city, for easy coordination of activities. Collaborative alliances have been established with other organizations and institutions with similar goals and objectives.

The care you need. The compassion you deserve.

Our Mission

Our mission is to provide quality and timely Rehabilitation, and psycho-social services to women and girls living with Endometriosis.

Our Vision

Our Vision is “a world without Endometriosis and its complications”.

Client Stories

“Greetings in the Blessed Name of our Lord. A mixture of untold pain and memories of sleepless nights fill my mind as I pen down my life’s story with today’s silent killer among women of reproductive age.

It was one morning on the 18th of April 2018 when I felt a piercing pain on the right side of my lower abdomen. It was so intense that i failed to even make a footstep. I sat in that position for awhile but the pain was getting worse. I didn’t know what to do next because i tried getting back to bed but the pain was just bearable. So i kept walking around my room something which yielded no fruits too, so I picked my phone and called mum to tell her i was going to hospital. When i got there i was given two shots of diclofenac injection and somehow felt relieved. I went back to my place and later that evening I passed out one of the largest clots I’ve ever seen. This was followed by an episode of nonstop bleeding (from April till August)

This bleeding forced me to leave the work i was doing and return home to my parents because blood would just flow like a running river, nonstop……with clots the size of my fist. I moved to different gynaecologists in town and none seemed to control my bleeding, in fact it kept getting worse. Meanwhile I wasn’t feeling any pain at that time, only blood flow…. I would just stay indoors and make sure a put a polythene on every surface i sat on in the house for fear of staining them. My life came to a standstill. I couldn’t get out for anything aside from medical appointments and treatment which were all not working.

.upfront it’s the beginning of August and my bleeding was not near stoppage. I started feeling Weak, i would make five steps and start panting, my head was so light and i always felt drowsy. So my mother decided to talk to her friend who works at Kawempe and I was taken there the following morning. At that point walking had become difficult for me so i was put on a wheelchair. I was sent for a scan and while there it wasn’t so clear. The doctor said what was in my stomach looked like an incomplete abortion!! The nurse almost ate me up, “So, Norah, all along you’ve been knowing what your problem is and you chose to disturb us? Don’t ever look for me after I leave this room,” the angry nurse said. I insisted by telling the doctor i never did any abortion. So he told me there’s a way to find out, TVS scan. So I prepare for it and while at it, the doctor calls back the nurse and tells her, “It seems your friend is right. Come and see the masses on her endometrium.,….slowly slowly I saw the nurse’s affection towards me returning. Doctor said my endometrium was extremely thick. He recommended further tests which i did and their conclusion was I had PCOS. I was immediately admitted to the emergency unit and transfused with three units of blood because my HBC was only 3!!!!

I was put on dostinex for three months but nothing changed. My parents spent every coin they had saved. I became a well known patient at different labs imaging centres but for me but no help came my way. I became depressed and a pessimist. After the wedding got back home…..life stayed like that for me to until July 2022 when I heard about a visiting team of doctors. So i made my way to go and meet them and it’s from there that a name was put to this disease which had eaten up every penny we’d ever had, ENDOMETRIOSIS. And it was from there that i begun hormonal treatment. However due to financial challenges i couldn’t get all the treatment I needed to get but God is faithful. I still struggle with lots of pains during my period which is so uncomfortable and stressful. I have to keep indoors whenever my period starts at least for two days because of pain and excess bleeding which lasts for five days( at least nowadays i don’t need medicine to stop bleeding). Bit for the first two days i can’t use a pad because it soaks up in a few minutes. I have attached some photos of the painful clots i see come out every month

My dream is for a Uganda where our health personnel raises enough awareness about this monster of Endometriosis and put facilities in place to help suffering ladies because ladies are dying in the name of “painful period pain is normal.”

For God And My Country

ECCU visit to the Commissioner Reproductive Health Department in the Ministry of Health

ECCU visited the Commissioner Reproductive Health Department in the Ministry of Health today afternoon, presented a hard copy of ECCU’s endometriosis status report for the year 2023 and discussed in depth the issues affecting the victims of endometriosis to include; physical, psychological and social- economic challenges.

The Commissioner was grateful to ECCU for the work done and pledged his total support to the civil society movement on endometriosis.

He maintains that endometriosis should be treated as a non communicable disease. It will still get the necessary attention it deserves.

That endometriosis is not taken as serious disease because it is not caused by germ, it’s not contagious and so it not pause a threat to others.

He highlights that, the Ministry of health should rethink a comprehensive approach to managing endometriosis. That this should be out word looking; involved both victims of endometriosis and the caretakers and family. This will then help them to gain a multi sectoral approach in managing the disease and the condition because they will be able to invite mental health and disease control experts to help.

He encouraged ECCU to continue creating awareness about endometriosis, it’s effects and implications to the victim, caretakers and family. This according to him should be done by health workers, civil society, victims themselves and other stakeholders.

They will capacitate the healthcare workers to be able to diagnose and manage the disease and the condition.

That ECCU should invite the members from the reproductive health department of Min of Health to participate in the awareness creation. They will always be available to do so.

He acknowledged that ECCU’s visit and sharing of the plight of victims of endometriosis has raised his attention for the disease and pledged to help the marginalised endometriosis community.

That the department will also initiate the process of including endometriosis in the national database. ECCU held the view that, this would make the healthcare workers to be more intentional in providing statics, which would inturn inform on policy and planning for the department.

These were the discussion held and some of the commitments made by the Commissioner.

THE BURDEN OF ENDOMETRIOSIS ON WOMEN AND GIRLS IN UGANDA - ARTICLE

Background and introduction
Most women and girls of reproductive age in Uganda are experiencing severe symptoms of endometriosis. This is attributed to the fact that; the disease is diagnosed nine to ten years later after it has progressed to stage four (severe stage). The sufferers experience severe symptoms such as severe cramps during menstruation; prolonged heavy bleeding; diarrhea; vomiting; problems in emptying their bowels and urinating; bloating- bleeding through the umbilical and in the lungs; pelvic pain and painful sexual intercourse; swelling of the belly; develop free fluid (ascities) in the abdomen; among others. Moreover, some women with endometriosis experience debilitating pain that prevents them from going to work while the school-going girls are prevented from continuing with their education/school. Consequently, many women and girls have lost their jobs and dropped out of school respectively. In addition, most women and girls have had their quality of life decreased due to severe pain; experienced fatigue; depression; anxiety; and infertility and many have lost their uteruses. The associated prolonged heavy bleeding and painful sexual intercourse renders women unable to engage in consensual marital sex, creating rifts within families. The women are often ostracized and victimised for what is beyond their control.

Current Situation Analysis
Endometriosis affects roughly 10% (190 million of reproductive age women and girls globally. Presently, there is no known cure for endometriosis and treatment is aimed at controlling symptoms and improving quality of life. In Uganda, research and awareness on endometriosis is still limited. However, from what is available, about 80 per cent of endometriosis cases are initially misdiagnosed as urinary tract or pelvic infections. This often leads to under management (diagnostics and medication) and unabated symptoms. The general public and most front-line healthcare providers are not aware that distressing and life-altering pelvic pain is not normal, leading to normalization and stigmatisation of symptoms and significant diagnostic delay. Patients who could benefit from medical symptomatic management are not always provided with treatment due to limited awareness of endometriosis among primary healthcare providers.

Solutions/Interventions made by ECCU
In 2021, after experiencing the severe symptoms and challenges presented by endometriosis and based on the recognised need, the founder, together with a Ugandan medical doctor with specialist training in Emergency Medicine and vast experience in managing endometriosis, started Endometriosis Care Centre Uganda (ECCU). ECCU is an independent, non-governmental, and not-for-profit professional organization that seeks to intervene in the physical, emotional, and psychological wellbeing of women and girls with endometriosis in Uganda.

Specifically, the centre aims to; create awareness through increased access to reliable information; generate information on endometriosis in Uganda and its complications through research, documentation and publication; provide holistic interdisciplinary medical care to those affected by endometriosis; build the capacity of victims to cope with the effects of endometriosis and provide technical support to government, NGOs and other development partners with regard to relief and therapeutic intervention for women and girls with endometriosis.

Currently, we partner with hospitals and private medical practitioners with specialist training in Obstetrics & Gynaecology where clients are referred for specialized care and management. During 2023, a total of thirty-two (32) women were referred for endometriosis management to these hospitals and the number is expected to grow during 2024. Of these Seventeen (17) women referred were confirmed to have endometriosis and needed support in management of the condition while the rest presented with severe symptoms for diagnosis. Following referral and diagnosis, case follow-ups are carried out to ensure that the clients get the appropriate support needed. In addition, ECCU offers online medical counseling and psychosocial tele-counseling services to those experiencing anxiety and depression as a result of the condition. Psycho-education is also offered to the caretakers and families of the clients on the effects of endometriosis and how they can support the patients through the healing process and coping with the disease.

A report on our achievements was presented to the Department of Reproductive Health in the Ministry of Health of the government of Uganda to help them appreciate the magnitude of the problem. The department is to incorporate a comprehensive approach that involves the victim, caretakers and family to managing endometriosis. Accordingly, this approach should cater to the physical and psychosocial needs of women and girls with endometriosis, to capacitate the healthcare workers to handle diagnosis and management of the disease and the condition, to initiate the process to include endometriosis into the health management information system. We continue to encourage women and girls to seek early diagnosis and management of endometriosis. We believe early management will help the women and girls regain a good quality of life, and prevent them from losing their jobs and dropping out of school, respectively.

Our Wish
We note with great concern that the burden of endometriosis is worsened by the fact that it is not reflected in the health management information system of the Ministry of Health and there is no streamlined surveillance system in place for the condition. OUR WISH is to secure Ministry of Health recognition of endometriosis as a prevalent health condition that deserves attention, through awareness creation. However, our reach is limited due to a lack of resources to generate the awareness creation and support the women and girls with endometriosis need. We request the Wish Wall team to support our cause to achieve our dream of reaching out to more people who are suffering in silence and have no support system that can help them cope with their condition and the challenges it comes with. Your support will also help us to create awareness of endometriosis and its implications on the quality of life of women and girls as well as establish a support network for those affected. It is our humble request that the plight of women and girls will qualify to be written on the Wish Wall Foundation. This is our first wish to be expressed on this remarkable platform and we await for it to be granted. For more information, please refer to; www.endometriosiscarecentreug.org

The writer is the founder of ECCU and has been living with endometriosis for the last 13 years before receiving correct and accurate diagnosis of the disease in 2019. Prior to that, it was, “…you have bad cramps…it’s normal to have pain during your period…take pain killers…” In the real sense, her life was wasting away! That’s the basis for the passion and conviction to start up ECCU to provide the most needed services to other women and girls so that they can stand a better chance through early diagnosis and management of endometriosis.
Written by Juliet Anango; email. juliet.anango@endometriosiscarecentreug.org

Our Reports

A RE-ECHO ON ENDOMETRIOSIS BY ECCU.

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