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There’s a need to raise awareness about the disease because it is a common underdiagnosed disease that kills women silently
Kampala, Uganda | PATRICIA AKANKWATSA | Faith Mulungi, a 32-year-old journalist, actress and content creator, has been living with endometriosis a disease in which tissue similar to the lining of the uterus grows outside the uterus for more than a decade now.
“I even thought that I had ulcers. I used to have excruciating pain before and after my periods. It took me eight doctors to finally find the problem,” she told the Independent in an interview.
She says whereas she had the first surgery in September 2021, the pain didn’t go away, forcing her to do a transvaginal scan that showed that her endometriosis had now metastasized to stage four.
“I was told I had a frozen pelvis and I needed surgery as soon as possible. I have never felt so helpless because first of all, I need to do the surgery out of the country in June this year if I can raise the needed US$25,000,” she said.
Endometriosis, according to the World Health Organisation, is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and is many times dismissed as a normal menstrual period.
The cause and prevention of endometriosis is still unknown but its symptoms can be treated with medicines or, in some cases, surgery.
The disease affects roughly 10% (190 million) of reproductive-age women and girls globally, according to the WHO statistics, and is associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.
Mulungi says having tried all available options to treat the disease including changing lifestyle in vain, she has now decided to seek for funds and undergo yet another surgery to remove the endometrial tissue and hopefully find some relief.
She said the procedure, known as laparoscopic excision surgery, is said to be the gold standard for treating endometriosis and thus reduce pain and other related symptom and to some extent improve fertility.
However, like any surgery, laparoscopic excision surgery is said to carry risks and requires careful consideration.
However, Mulungi says she has consulted with a specialist in endometriosis surgery, weighed the pros and cons, and made an informed decision to proceed with the procedure.
She hopes that the surgery will provide her with some relief from the pain and other symptoms of endometriosis, and allow her to live a more active and fulfilling life.
“I have tried every treatment but nothing has worked. They even tried to put me in a menopausal stage but the periods kept coming. I get hot flashes, excessive bloating, fatigue and reduced bone density,” she said.
“Endometriosis has affected my way of life. Most times I have to plan for my work before the pain starts.”
Doctor’s opinions
Dr Joseph Muhumuza an endometriosis expert at Medical Hub, Uganda, says any woman in her reproductive stage is at risk of getting endometriosis although there are some risk factors like retrograde menstruation which happens when menstrual blood containing endometrial cells flows backwards through the fallopian tubes and into the pelvic cavity, leading to the implantation of these cells in various areas of the body.
He also says hormones, particularly estrogen, play a significant role in the growth and shedding of endometrial tissue.
“It is believed that hormonal imbalances may contribute to the development of endometriosis,” he said.
Dr Muhumuza says symptoms of endometriosis can vary from person to person, and that some individuals may experience more severe symptoms than others.
“It›s important to note that the presence or severity of symptoms does not necessarily correlate with the stage or extent of endometriosis,” Dr Muhumuza said.
“Some individuals with mild endometriosis may experience severe symptoms, while others with advanced endometriosis may have minimal or no symptoms at all. If you suspect you may have endometriosis, it is advisable to consult with a healthcare professional for proper diagnosis and management,”
Treatment
Dr. Gonzaga Andabati, a gynaecologist at Bethany Hospital says treatment for endometriosis aims to manage symptoms, reduce the progression of the disease, and improve the quality of life for individuals affected by the condition.
“The specific treatment options may vary depending on factors such as the severity of symptoms, desire for fertility, and individual circumstances,”
He says that the fastest treatment is pain medication. “Over-the-counter pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs), can help alleviate mild to moderate pain associated with endometriosis. Prescription-strength pain medications may be recommended for more severe pain,” he said.
He adds that hormonal therapies are also commonly used to manage endometriosis by reducing the growth and shedding of endometrial tissue.
Dr Muhumuza, meanwhile, says when the pain progresses, surgical interventions are applied to further reduce the pain.
“This minimally invasive procedure involves the removal or destruction of endometrial lesions, scar tissue, and adhesions through small incisions in the abdomen. It can provide relief from symptoms and improve fertility outcomes,” he said. He added: “In severe cases or when fertility is no longer desired, a hysterectomy (removal of the uterus) may be considered. This is usually done by removing the ovaries (oophorectomy) to eliminate estrogen production,”
He, however, says that surgery doesn’t depend on the stage of the endometriosis and that it may vary from one person to the other.
Dr Muhumuza says it is important to raise awareness about endometriosis because it is a common underdiagnosed disease that kills women silently.
“We have started training many health professionals on how to detect endometriosis with advanced scans. It is normally discharged as painful menstrual periods,” he added.
