Endometriosis Warriors in Uganda

For those of you unfamiliar with endometriosis, it is a chronic condition causing severe pain and, without treatment, it can cause damage to the ovaries, leading to infertility problems. It is estimated that 1 in every 10 women has endometriosis. Grace Nagawa tells her story:

“I began my periods at 14 years of age. They were incredibly painful from the beginning and I had them for two weeks at a time. I was taking regular painkillers and was often having to leave school because of the pain. In 2000, when I was 22, I started having pregnancy symptoms and chronic headaches, dizziness, and loss of appetite. Whenever I went to hospital, doctors would think I was pregnant. When pregnancy tests came back negative, they started treating me for UTIs. I took antibiotics for over 6 years.” 

As the pain and symptoms continued, Grace went for scans. The radiologists would see cysts, but the doctors would brush them off, saying they were physiological issues that would resolve with time. During this time, Grace was training to become a nurse but had to leave as she couldn’t cope with the pain and loss of energy. In 2017 the symptoms became so severe that she spent three months with breathing difficulties. She had gone back to school to finish her nursing training and, at one point, collapsed, waking up to find herself in hospital. Here, again, she was sent for a scan. She had two huge masses on her ovaries. They were eaten up and one mass had burst. She went back to the doctor and showed her the scan. The doctor called in a gynaecologist who organised an emergency operation for the following day. 

“I went to the theatre around 9am and didn’t return until 5pm that evening. My parents asked the nurses what had happened to me but no one could really explain and the condition seemed to be new to them all. When I was drifting in and out of consciousness, I would hear the doctors discussing my case and saying that they had never seen anything like it. Finally, the gynaecologist arrived to explain what had happened and I was given my endometriosis diagnosis. The doctor said it was a condition he had gone for years without seeing.“

The doctor proceeded to tell Grace that there was no one in Uganda who could manage her diagnosis. He said the endometriosis was already in a really extensive state - affecting her intestine, and her ovaries all but eaten up. He said she would have to seek treatment outside of Uganda and, in the meantime, offered injectables to stop her periods and help manage the pain. Miraculously, Grace was able to finish her nursing course during this time and managed to pass all her exams. 

On a later visit to the doctors, Grace was told that there was nothing they could do and that she would most likely die with the pain:

“I went back home as I wanted to be somewhere I knew, surrounded by my family. I began to take herbal medicine and this eventually gave me enough energy to leave home, as I didn’t want my sisters to continue seeing me in that state. I wanted to be brave for them. I applied and found a job as a nurse. Then after three months, I experienced the same pains again, not realising how fast the masses on my ovaries had been growing while the herbal medicine was temporarily masking the pain.”

Grace met with a gynaecologist who decided to do a hysterectomy to remove her uterus. They said even with removal, the endometriosis had spread so extensively that she would suffer with pain for the rest of her life. Grace called her brother, Joseph, in the UK, who planned for the surgery in Nairobi. It was incredibly hard for the family and the surgery cost 30 million Ugandan Shillings (around USD$7,895). 

“After surgery I felt much better. I had a better life than before. More energy. That’s when I said to my family: ‘You know what, there are many women suffering out there and they don’t know what they’re going through. Medics in this country struggle to detect this [endometriosis].’ That’s when I decided to start this foundation and support women going through this.” 

Many women who suffer with endometriosis in Uganda are referred to mental hospitalities due to suicidal tendacies. With the Foundation, they now have a place to talk and feel understood. 

Thank you for sharing your journey with us, Grace. It sounds like a horrific experience and it’s so scary to think of all those other women who will be going through something similar. Could you tell us a little bit more about Endometriosis Foundation Uganda and what it aims to do?

Endometriosis is a chronic disease where the inner lining of the uterus grows outside of the uterus. Endometriosis Foundation Uganda is a non-profit organisation with its main office in Lwengo District, and another office in Kampala. The main aim is raising awareness about the condition and improving the quality of life for those women affected by endometriosis. We advocate and promote access to quality endometriosis services, including timely diagnosis, appropriate treatment, care and support. We also champion economic empowerment for women affected by endometriosis.  

In Uganda, it takes a very long time to diagnose this condition. You find that we have few gynaecologists who can really handle this problem and many doctors mismanage it. Some women have to move to neighbouring countries for further management which is really too expensive. Surgery is too expensive for most women so they have to soldier on through the pain. 

Yes, I believe it’s the case in the UK as well that it takes a long time for a diagnosis. That’s why it’s great to have Foundations like yours, and initiatives like Endometriosis Awareness Month to encourage people to get checked if they experience symptoms. Now, obviously Uganda is a diverse country, with many different languages and tribes. How have you found rolling out the programme nation-wide? Has there been a positive reaction to it?

Since Uganda has different languages, we try to spread awareness in English - the national language - to talk about this condition. We also call in interpreters to help us where needed. We use social media a lot, and would love to reach out to different parts of the country and different parts of the world talking about this condition. Most people see us on social media or on TV, and they call from different areas. They can’t come to us so we have to travel to them. But with transport so expensive it’s been difficult, but we’re trying our best.

Are there treatments you can recommend to women suffering from endometriosis if they can’t afford the surgery?

Laparoscopy is the definitive procedure for diagnosing this condition. For women out there going through the symptoms of endometriosis it will be better to have this procedure and know. Then when it’s diagnosed you will have better treatment options as it will show the extent of how this disease has affected you. We have different therapies, such as hormonal therapy, which is given at times after surgery to help balance out the hormones. There are, of course, hormonal drugs also. Different things work for different people. Some people are really helped by the drugs and some people not so much. You often find that dietary and lifestyle changes can do wonders for many sufferers. Personally, I have focused on my diet and lifestyle and it has kept me going after my last surgery. I now have more energy, I have more pain-free days and am able to be up and talking about this condition and supporting other women - helping to put a smile on their faces. 

I would also recommend joining a support group as most of these ladies face anxiety or depression. So joining a support group also gives us courage and we learn from each other. The condition has two journeys, you know, the chronic endometriosis and then the fertility journey. You find that having been through that period pain, that chronic endo pain, you now have the fertility journey ahead of you. Most of us are affected by this, but we are strengthened by each other.

It’s so important to be able to share experiences with others facing similar situations. Are you working with any similar organisations within or outside of Uganda? 

We are working with the Endometriosis Foundation in Kenya who are helping us to organise training sessions. Gynaecologists in Kenya are much more equipped to deal with this condition than in Uganda. So we organise meetings and some training. Therefore if some women aren’t able to travel to Kenya, at least they can get better support here. 

Also the founder of Joy For Humanity in Uganda has really been so supportive. Endometriosis is a very expensive condition. When we founded this organisation, we decided to build a family of endo warriors and currently we are over 70 ladies in the group. Many of them had lost hope in life but, when we come together as a family, we are all supported. Personally I use my own salary to cover some expenses to support the endo warriors as it is so expensive, so it’s really nice to have the support of Joy For Humanity as well.  

What can our audience do to help?

We would be so grateful if anyone would come in and partner with us or come in and give us a hand. We need help financially; with transport, some materials such as sanitary towels, hot water bottles etc. And we’d like to move out to different parts of the country. We would also love to empower these women economically. Most of them have lost their jobs - having to quit as no one will accommodate them when they need days off to deal with the pain. So we would love people to come in and give us a hand so that these women can have a personal income and work together and allow people to enjoy life, as this is a lifetime journey. 

Absolutely. I hope more people are able to take up this cause and work with you. Final question: can you tell me about a woman who has been an inspiration to you? Either in work or outside of it?

Actually the lady who has been an inspiration to me is Muniba Mazari. She is a Pakistani UN ambassador. Through her journey I learnt a lot. She had a horrible accident, she lost her legs, she lost her marriage and then she had to come up and speak about it in public. She really had a big impact on me because, you know, I suffered with endometriosis for about 20 years and since I was a young girl - 14 years of age - I didn’t know what to do with my life, not until 2017 when I was diagnosed with endometriosis. I used to grow up not knowing what the problem was - I was never a normal woman as I was dealing with chronic pain, having periods for two weeks every month. Because of that people could never understand me - my family, my sisters - I would ask them if they were going through the same horrible thing that I was going through but it wasn’t the same story. At school I was so different. At the final stages before my diagnosis it was really so tough. But I had to focus on the fact that I wanted to be a nurse and, even with horrible pain, I had to get through school and complete my education. It was really hard for me. I went through a lot of challenges. So, despite what she (Muniba Mazari) also went through, I saw her courage and I felt much better. And I realised as a nurse in hospital, most of these girls come in with chronic period pain and take this pain to be normal, which it is not. Many women out there are going through this, many women are mismanaged and need to be able to talk about it. That’s why I admire her courage - talking about it is so important.

I agree. Being able to talk about this condition is really key to more people finding the help they need. Thank you for speaking with us, Grace.