Why chronic menstrual pain is often misunderstood

As a teenager, Rebecca learned about reproductive health -- from puberty and menstruation to the journey of motherhood -- from her biology class. Outside of school, the changes in a woman's body were not readily discussed.

Rebecca ended up feeling confused and isolated in her journey as she grappled with a mixture of symptoms that were hard to explain -- from severe cramps, bloating, constipation and unusual cravings to heavy bleeding, headaches and fatigue that left her bedridden for days. Unfortunately, because many of her peers experienced mild cramps, her 'discomforts' were often dismissed as ‘typical menstrual issues’ or followed by tales of doom such as infertility or even death.

Now a 35-year-old mom to a six-year-old son, she looks back at her experience.

“I thought I was just unlucky,” Rebecca* recalls. “My friends would talk about their period cramps, but what I felt was on a whole different level. I’d miss school because the pain was so bad.”

As she entered her twenties, Rebecca's pain intensified. It wasn’t just during her periods; she had chronic pelvic pain, pain during intercourse, and digestive issues. Desperate for answers, she visited multiple doctors, but her concerns were often brushed off. She was told it was all in her head or part of being a woman.

“I felt so dismissed and invalidated,” she says. “Every doctor I saw told me it was just part of being a woman and that I needed to toughen up. It was incredibly frustrating and isolating.”

The turning point came in her late twenties when she was finally diagnosed with endometriosis and adenomyosis.

Dr Ezekiel Mecha, a senior lecturer at the Department of Biochemistry, University of Nairobi, and a board member of the World Endometriosis Society explains that endometriosis occurs when cells that normally line the uterus are found outside the uterus in places such as the peritoneum, lungs, and even the brain.

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“Endometriosis is a condition where tissue similar to the lining inside the uterus grows outside. When these cells undergo bleeding during menstruation, it leads to pain and potentially infertility,” Mecha explains.

Dr Charles Muteshi, a Consultant Fertility and Endometriosis Expert at Aga Khan University Hospital, distinguishes between endometriosis and adenomyosis.

“Endometriosis is the presence of cells that would normally sit in the lining of the uterus found outside it, in the pelvic organs or distant sites like the belly button or the lungs,” he says.

In contrast, adenomyosis involves the presence of these cells within the muscle of the uterus itself. “These cells, when they are in the muscle of the womb or the uterus, we call them adenomyosis because they are seated right in the muscle of the womb.”

In other words, adenomyosis involves the tissue that normally lines the uterus growing into its muscular wall, also causing intense pain and heavy periods.

Rebecca says she was relieved when she finally got the diagnosis. "It was a bittersweet moment,” she shares. “I was relieved to have a name for my pain but also terrified of what it meant for my future.”

She underwent multiple surgeries to remove the excess tissue and tried various hormonal treatments to manage the symptoms. The journey was emotionally and physically draining, affecting her career and personal life.

When Rebecca and her partner decided to have a child, the fear of infertility loomed large. She went through one miscarriage, but after years of trying and with the help of fertility treatments, she gave birth to her son through C-section.

While motherhood brought immense joy, her battle with endometriosis and adenomyosis was far from over.

“Becoming a mom was a dream come true but managing my conditions while raising a child was incredibly tough. There were days when the pain was so severe that I could barely move, let alone take care of an active toddler,” she says.

From the age of 12, Veronica Gacheri has been experiencing debilitating period pain. For 14 years, she battled an invisible enemy, often missing school and work. It wasn’t until she was 26 that she finally received a diagnosis, bringing both relief and a new set of challenges.

“Getting diagnosed was a relief because it meant I was not imagining things," Gacheri shares.

According to Dr Mecha, there are many causes of endometriosis, the two common ones being genetic inheritance and retrograde menstruation -- when blood from your period flows backwards into your abdomen instead of out your vagina.

Symptoms vary but commonly include menstrual pain (dysmenorrhea) that is often severe and may worsen over time, pelvic pain outside of menstruation, pain during sexual intercourse (dyspareunia), painful bowel movements or urination, especially during menstruation, heavy or irregular menstrual periods, and infertility or difficulty becoming pregnant.

Gacheri's symptoms included severe anaemia, fainting spells, and gastrointestinal distress.

“Period pain has been normalised in society. So, again, you go into hiding during those days. You take the normal over-the-counter medication, which helps but doesn't help because the pain progresses,” she says.

Despite societal pressures and misconceptions, Gacheri found strength in her diagnosis and began volunteering with the Endometriosis Foundation of Kenya. Her advocacy work has provided a voice for the voiceless, helping others find the support she once lacked.

“After I got my diagnosis in 2016, the journey was lonely. I want to be part of changing the narrative. I want other girls who are younger than me not to go through what I went through, not to be told the same things I was told. Volunteering has given me a sense of purpose,” Gacheri says.

Anne’s journey is not very different. As an active woman who enjoyed hiking, she began experiencing chest pains and breathlessness, symptoms that seemed unrelated to her menstrual cycle.

“When I first got diagnosed with endometriosis, I'd already had surgeries before, and I had previously struggled with painful periods. I didn't understand what the issue was,” Anne begins. Like many young women, she initially believed that painful periods were just a part of womanhood.

It wasn't until Anne was 30 that she received a diagnosis of endometriosis. By then, she had been living with debilitating pain for years. Reflecting on her high school years, Anne shares a particularly poignant memory: “I remember we were doing a history paper, and I passed out because the pain was so much, just before the paper. The teachers assumed I was trying to avoid the exam so I almost had to crawl to the exam room.”

Anne's diagnosis came after years of misdiagnoses and dismissals. In 2018, she experienced chest pain and breathlessness, which puzzled her doctors.

“I used to do odd jobs here and there, so I had struggled with chest pain and breathlessness for a while. When I finished my internship, I noticed that if I had a long shift, I'd have pain on the right side of my chest,” she explains.

Doctors initially questioned her about high-altitude activities or potential trauma, but Anne had no such experiences. It wasn't until a chest x-ray revealed that her right lung was significantly smaller than her left that the pieces of the puzzle began to fit together.

Dr Muteshi emphasises the pervasive nature of endometriosis, noting that it is vastly underrepresented in healthcare systems worldwide. “Endometriosis is quite common, with an estimated 1 in 10 women affected,” he explains. “However, this number may be even higher among specific patient populations, such as those presenting with pelvic pain or seeking fertility treatment.”

The implications of this statistic are profound, as many individuals with endometriosis may remain undiagnosed or undertreated. Dr Muteshi highlights the debilitating nature of the condition, which can severely compromise quality of life and lead to life-threatening co “Endometriosis tends to run a chronic course, with symptoms ranging from chronic pain to life-threatening conditions such as collapsed lungs,” he elaborates. mplications.

“Endometriosis tends to run a chronic course, with symptoms ranging from chronic pain to life-threatening conditions such as collapsed lungs,” he elaborates.

“I was shocked when they told me my lung had collapsed,” Anne recalls. “I had no idea it could be related to my period pain.”

Anne lived with the discomfort for years, unable to afford the necessary medical interventions. When she finally secured a stable job and health insurance, she underwent surgery to repair her lung.

During this process, doctors discovered that her collapsed lung was due to endometriosis. This revelation was shocking and enlightening, highlighting the often-overlooked complexity of the condition.

“The surgery was expensive, but it was worth it to finally understand what was happening to my body,” she says. “Endometriosis is not just a reproductive issue; it can affect other parts of the body too.”

“The total cost of surgery was Sh530,000. If I didn't have insurance, I don't know how many harambees I would be calling for,” she highlights the disparity in healthcare access, noting that only those who can afford private healthcare have timely access to necessary treatment.

Dr Mecha emphasises the importance of early diagnosis and awareness. “Endometriosis cannot be prevented, but we advocate for early diagnosis through increased awareness,” he says. “If a young girl feels a lot of pain during her periods, she needs to see a physician who can determine whether it's endometriosis or another condition.”

He also highlights ongoing research aimed at developing non-invasive diagnostic methods. “Currently, we rely on laparoscopy, but we are working on non-invasive methods using saliva, body secretions, or urine,” Dr Mecha shares. “This will make diagnosis easier and more accessible.”

“Endometriosis management needs a multi-sectoral and multidisciplinary approach,” he states. “We need increased awareness and a dedicated endometriosis policy. Insurance companies should also consider covering this condition to alleviate the financial burden on patients.”