Shameem Blake vividly remembers when what seemed to be her body’s normal reaction to her menstrual period became severe and difficult to manage.
The Blantyre-based woman says her period cramps became increasingly painful. She was regularly bloated and nauseous, often vomiting and on some occasions, even fainting.
Yet the pain was dismissed by those she confided in as normal, a pain every woman is forced to endure.
“They told me that the pain was in my head. They said all I had to do was get pregnant and I’d be healed. They said all women go through such pain all the time so it’s nothing serious,” Blake recalls.
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But what she was experiencing were in fact symptoms of endometriosis, a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus.
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According to the World Health Organisation (WHO), symptoms include severe pain during menstruation, heavy menstrual bleeding, chronic pelvic pain, which does not go away when the menstrual cycle ends, infertility and abdominal bloating and nausea.
“Some believe women exaggerate the pain, but the pain we experience is indescribable. It’s the kind of pain where you feel like you’re taking your last breath. I wouldn’t wish it on anyone,” she says.
It took nearly two years of worsening symptoms, which gradually became unbearable and started to interfere with her daily life, before she finally received a diagnosis.
“I had scans and countless lab tests before I finally met a gynaecologist who diagnosed me with endometriosis almost immediately after reviewing my symptoms and results,” Blake says.
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While the revelation put her at ease and brought some clarity in terms of the battle she was fighting, it also brought a realisation of limited and expensive treatment options.
Due to the severity of her condition, Blake was given the option of surgery, which she has already undergone, as the disease has spread beyond her reproductive organs and even affected her ability to conceive.
“I have been married for three years but I don’t have a child yet because of endometriosis.
“I had a procedure, laparoscopy, last year in South Africa, but now I need another surgery because the endometriosis has spread to my chest and lungs,” she says.
A laparoscopy is a minimally invasive technique that uses a camera, a laparoscope, and small incisions to diagnose or treat abdominal and pelvic conditions.
Sexual and reproductive medicine specialist Zaziwe Gunda says that currently women with the disease are either prescribed painkillers such as paracetamol or ibuprofen depending on their level of pain.
Others may undergo hormonal treatment to suppress their menstrual cycles or surgery to remove abnormal tissue.
Gunda adds that the state of public health facilities remains one of the major barriers preventing women from accessing treatment quickly.
“We can do CT scans or MRI scans to check the extent of the endometriosis spread. This can help determine whether surgery would work in that instance.
“However, because our health system is under pressure and the burden of disease is high, surgeries may be delayed,” he says.
Gunda adds that while painful menstruation can be a symptom of endometriosis, it may also be caused by other conditions such as fibroids or pelvic infections.
He mentions the need for proper medical assessment when the pain becomes persistent or severe and challenges the belief that severe period pain is normal.
Across Malawi, many other women are living with endometriosis, including Alinafe Phiri Kasiyafumbi, whose journey with the condition led her to create a support group for others facing the same struggle.
Founded in 2024, the group currently has 24 members.
For Kasiyafumbi, symptoms started when she was still very young. Her first period at the age of 10 came with painful cramps, forcing her to miss several days of school almost every month.
In later years, she was told that what she was experiencing was normal and would eventually go away after having children.
“Many clinicians lack sufficient training or awareness to properly assess patients with this condition. Imagine being only 15 years old and being told that your severe pain will stop once you get pregnant,” she says.
It was three decades later that Kasiyafumbi finally received a diagnosis. By then the disease had progressed and many of her symptoms had worsened even after treatment.
“Endometriosis does not simply disappear after surgery. It can continue affecting other organs. I still experience many symptoms including pelvic pain, bladder pain, bowel pain, shoulder pain and neck pain,” she says.
Data from WHO states that endometriosis affects an estimated 10 percent of women of reproductive age worldwide. This is about 190 million women.
Locally, however, the true scale of the condition remains unclear due to limited diagnostic capacity.
According to Director of Reproductive Health Services in the Ministry of Health, Owen Chikhwaza, the country currently has no data on the prevalence of the condition.
“Diagnosis is usually done at central hospital level and often requires specialised procedures such as laparoscopies, which are only now being developed in some facilities,” Chikhwaza says.
He adds that the country also faces a shortage of specialists, making it likely that many cases are still undiagnosed.
“In some regions of the country there are only a few gynaecologists serving large populations,” he says.
On treatment, Chikhwaza explains that the approach depends on the severity of the condition. Echoing Gunda’s sentiments, he says mild cases are often managed with painkillers, while more severe cases may require hormonal treatment.
“For advanced cases, surgery may be required and in extreme situations a hysterectomy may be considered,” he says.
Chikhwaza also acknowledges that there are currently no specific national awareness initiatives focused on endometriosis, although discussions around the condition could help bring more attention to the issue.
He adds that the Ministry of Health is working to strengthen surgical capacity through laparoscopic training programmes at Kamuzu Central Hospital and Queen Elizabeth Central Hospital.
