What next for women suffering with endometriosis?

Uterus and abdominal pain medical concept. (Courtesy/iStock)

Endometriosis is a condition that has long been shrouded in mystery, despite affecting one in ten women worldwide. In recent years, more women are coming forward to share their struggles, breaking through the silence that has surrounded this debilitating condition for decades.

Dr Andrew Horne, a Professor of Gynaecology and Reproductive Sciences and President-Elect of the World Endometriosis Society (WES), defines endometriosis as “a chronic pain condition where tissue similar to the lining of the womb is found outside it.”

Far from being just a reproductive health issue, endometriosis is now recognized as a global public health challenge.

This condition presents a wide array of debilitating symptoms, including chronic pelvic pain, painful menstruation, fatigue and even infertility. Dr Horne emphasises, diagnosis often takes an average of eight years due to low awareness, a lack of non-invasive diagnostic tools and overlapping symptoms with other conditions like irritable bowel syndrome.

As the global conversation about women’s health begins to shift, the question remains: What’s next for the millions suffering from endometriosis?

According to Dr Ezekiel Mecha, an endocrinologist, endometriosis researcher and WES board member, in Kenya, the story is no different and the condition continues to be underdiagnosed and misunderstood.

“The most commonly diagnosed types of endometriosis in Kenya are superficial, followed by ovarian and deep infiltrating endometriosis (DIE),” he explains. Rare forms such as thoracic and intestinal endometriosis have also been identified locally.

Despite these findings, there is still much to learn. “There is no study which has been done to show regional variations in prevalence across Kenya or the larger African continent,” Dr Mecha says.

This gap in data reflects a broader lack of resources and attention to endometriosis in developing regions, where societal taboos and systemic barriers further complicate early diagnosis and treatment.

Superficial peritoneal endometriosis, which accounts for about 80 percent of cases, involves lesions on the pelvic lining and often causes significant pain.

Ovarian endometriosis is characterised by cysts filled with altered blood, commonly referred to as “chocolate cysts,” which are frequently associated with infertility and ovarian dysfunction.

Deep infiltrating endometriosis, meanwhile, involves fibrous and nodular lesions that can penetrate organs such as the bowel and bladder, making surgical treatment especially complex. Dr Horne emphasises that while pelvic endometriosis is the most studied, its variability often leads to misdiagnosis or delayed treatment.

Extra-pelvic endometriosis, though less common, highlights the systemic nature of the disease. It appears in areas outside the pelvis, such as the lungs, diaphragm or even the belly button, often mimicking other conditions and leading to delayed or missed diagnoses.

Dr Mecha highlights that as much as extra-pelvic endometriosis is rare in Kenya, the importance of recognizing this broader impact, noting that “extra-pelvic endometriosis challenges traditional diagnostic methods and reminds us that endometriosis is not solely a gynaecological condition but one that can affect the entire body.”  

Globally, it takes an average of eight years to diagnose endometriosis, but in Kenya, the delays are even longer due to unique challenges. Dr Mecha highlights three key barriers being lack of resources limiting access to advanced imaging and laparoscopic tools which hampers timely diagnosis. 

“Endometriosis awareness programs are largely missing in Kenya,” Dr Mecha says, in contrast to developed countries with robust educational campaigns creating awareness gaps.

He adds that it is deemed a cultural taboos where societal and religious stigmas around menstruation often discourage women from seeking help, normalizing severe menstrual pain as an unavoidable part of womanhood.

The World Endometriosis Society (WES) stresses the critical need for increased awareness, early intervention and tailored treatment strategies. “Every type of endometriosis requires a personalized approach to address the diverse needs of patients,” WES highlights. 

With approximately 190 million individuals affected globally, understanding the full spectrum of this disease is vital to improving outcomes and enhancing quality of life for those living with endometriosis.

The treatment of endometriosis is multifaceted and often riddled with setbacks. Both Dr Horne and Dr Mecha agree that managing endometriosis requires a multifaceted approach. Unfortunately, as Dr Horne points out, “There is no definitive cure.” Treatments aim to manage symptoms and improve quality of life but often fall short of providing long-term relief.

Hormonal treatments such as birth control pills or gonadotropin-releasing hormone (GnRH) analogues are commonly prescribed to suppress symptoms. However, they come with side effects and are not ideal for women trying to conceive.

In Kenya, Dr Mecha confirms that this is the most common treatment used to manage endometriosis cases and sometimes supplemented by laparoscopy. 

Surgical Intervention

Laparoscopic surgery is the gold standard for diagnosing and treating endometriosis, ultrasound and transvaginal sonography have started to complement it in Kenya. Laparoscopy involves removing or destroying endometriotic lesions.

In Kenya, efforts like Laparoscopy Mashinani are making these procedures more accessible in rural areas, but cost remains a significant barrier. 

“Earlier diagnosis leads to better treatment outcomes, but the expense of surgery makes it inaccessible to many,” Dr Mecha says.

While surgery can alleviate symptoms, its success rate varies. “Recurrence rates can be as high as 50 per cent within five years,” Dr Horne says, underscoring the need for complementary therapies.

For many women, surgery becomes a cycle of temporary relief and recurring pain. “Patients often undergo multiple surgeries alongside other treatments to manage their symptoms,” he noted.

Non-steroidal anti-inflammatory drugs (NSAIDs) are commonly prescribed for pain management. However, access to these treatments can be limited in rural areas.

Misconceptions and awareness

Endometriosis is often misunderstood, with misconceptions further complicating the experience of those affected. One of the most damaging myths is that painful periods are ‘normal.’

Dr Horne stressed, “Women are frequently told their pain is a natural part of being a woman, leading to delayed diagnosis and treatment.”

This normalization is especially problematic in Kenya, where cultural perceptions further stigmatize reproductive health issues.

According to Dr Mecha, “Anything associated with reproductive health in many developing countries is taken as sacred, making it difficult for women with painful periods to come forward.”

The condition is also wrongly associated solely with infertility. While it can affect fertility, endometriosis manifests in a broad spectrum of symptoms, making it crucial to approach each case individually.

Similarly, women with this condition can be helped with assisted conception procedures such as In Vitro Fertilization (IVF).

Promising advancements are being made to address the gaps in endometriosis care. The WES is exploring non-hormonal therapies like dichloroacetate, which targets elevated lactate levels in the pelvis, and cannabinoid-based treatments to manage pain. .

In Kenya, collaborative initiatives are also gaining traction. “Management of endometriosis requires a multidisciplinary approach,” Dr Mecha emphasises, adding that gynaecologists are increasingly working alongside dietitians, psychologists and pain specialists to provide holistic care.

Living well with endometriosis requires more than medical interventions; lifestyle changes and emotional support are equally vital for managing the condition effectively.

Regular, gentle exercise is another essential component, as it can help reduce chronic pain and enhance overall well-being. However, Dr Horne advises against overexertion, adding, “It’s essential to pace yourself and avoid overexertion, which can exacerbate symptoms.”

These lifestyle adjustments offer a practical starting point for many women, especially in Kenya, where healthcare resources are limited.

Globally, efforts to raise awareness about endometriosis are gaining traction. Both Dr Horne and Dr Mecha stress the importance of advocacy and awareness in improving outcomes for women with endometriosis.

International organisations like the World Endometriosis Society are driving research, advocacy and education, while governments are starting to invest in women’s health initiatives, local initiatives are equally vital.

However, much work remains. From improving diagnostic tools to addressing societal stigma, a collective effort is needed to ensure that women with endometriosis receive the care and respect they deserve.

Dr Mecha emphasises the path forward includes fostering endometriosis policy development and integrating awareness campaigns into Kenya’s public health agenda. “It’s through collaboration and media advocacy that we can create change,” he says.

As the global conversation around women’s health evolves, it is imperative to amplify voices, address systemic barriers, and debunk myths while embracing innovation. By doing so, we can begin to rewrite the narrative for women living with endometriosis in Kenya and beyond.

Women are encouraged to take a personalized approach by keeping a diary to track their menstrual and reproductive health symptoms and prioritizing regular visits to a doctor.