The Silent Struggle: Why Endometriosis Deserves More Attention

Endometriosis is one of the most misunderstood and underdiagnosed conditions in women’s health, despite affecting an estimated 10% of reproductive-aged women worldwide (1). It is a chronic, inflammatory condition where endometrial-like tissue grows outside the uterus, causing debilitating pain, infertility, and multi-system complications. Yet, it remains underfunded, under-researched, and often dismissed as merely ‘bad period pain.’

The consequences of this neglect are staggering. Women suffer for an average of 7 to 10 years before receiving a correct diagnosis (2). By the time they do, many have undergone multiple surgeries, struggled with infertility, or even lost their jobs due to debilitating symptoms.

This article explores why endometriosis deserves greater attention, how the current healthcare system is failing these patients, and why a Center of Excellence for Endometriosis is critical for transforming care.

1. Delayed Diagnosis: A Decade of Suffering

One of the biggest challenges in endometriosis care is delayed diagnosis. Studies show that more than 60% of women with endometriosis were misdiagnosed initially (3). Many are told they have irritable bowel syndrome (IBS), interstitial cystitis, or even anxiety before the correct diagnosis is made.

The delay occurs due to several factors:

• Normalizing Women’s Pain: Society often dismisses menstrual pain as something women should ‘just endure.’ This leads to healthcare providers underestimating symptoms.
• Lack of Awareness Among Doctors: Many general practitioners and even gynaecologists are not trained to recognize the full spectrum of endometriosis symptoms.
• Inadequate Diagnostic Tools: Endometriosis does not always show up on routine ultrasounds, and laparoscopic confirmation is often delayed.

The impact of this delay is significant as it is not only affecting the quality of life of our young women but the productivity and economy of the country. A study published in the Journal of Endometriosis and Pelvic Pain Disorders found that the longer the delay in diagnosis, the more severe the disease progression and the worse the patient’s quality of life (4).

2. Economic and Social Impact: The Hidden Burden

Endometriosis is not just a health issue; it is an economic issue. The treatment options for endometriosis include surgical intervention, medical management or a combination of both. A study in the American Journal of Obstetrics & Gynecology estimated that the global economic burden of endometriosis exceeds $119 billion annually due to lost productivity and healthcare costs (5). Looking at the costs involved in both for Malaysia:

• Surgical Treatment: Laparoscopic surgery is a minimally invasive surgical procedure that removing endometrial lesions, scar tissue, and adhesions. The cost of laparoscopic surgery for endometriosis in Malaysia can range from RM30K- 60K depending on the location, severity of disease, duration of surgery, surgeon’s fee and hospital charges.
• Medical Treatment: Medical management of endometriosis involves hormonal therapies such as GnRH agonist, progestins, and combined oral contraceptives. The cost of medical treatment for endometriosis can range from RM 1200 – RM 3500 per year, depending on the medication and duration of treatment.

However, the indirect cost were not taken into consideration which could be far higher from the impact of endometriosis.

• Workplace Challenges: Women with endometriosis often face job loss, absenteeism, and discrimination. Chronic pain reduces their ability to work effectively, yet employers and colleagues rarely understand the condition.
• Mental Health Toll: Studies indicate that up to 50% of women with endometriosis suffer from depression and anxiety due to the chronic nature of their pain and the societal invalidation of their symptoms (6).
• Infertility Costs: Many women require assisted reproductive technologies (ART), such as IVF, which are not always covered by insurance, further adding to their financial burden.

Despite this, funding for endometriosis research is disproportionately low compared to conditions like diabetes, prostate cancer, or cardiovascular diseases, which affect a similar number of people.

3. The Need for Specialized Center of Excellence

Given the complexity of endometriosis, multidisciplinary care is essential. However, many hospitals and gynaecology departments lack expertise in advanced laparoscopic and robotic surgery for endometriosis, leading to incomplete excisions and high recurrence rates. Complete excision of endometriosis lesion with preservation of organ function is paramount importance in the surgical management of endometriosis. Centres of Excellence for Endometriosis are the answer. These specialized centres would:

• Ensure Timely and Accurate Diagnosis: Utilizing expert-trained radiologists and gynecologists for high-resolution ultrasound and MRI to detect deep infiltrating endometriosis early.
• Provide Multidisciplinary Treatment: Bringing together gynaecologists specialised in endometriosis, colorectal surgeons, urologists, pain specialists, and mental health professionals who are trained to handle endometriosis to manage the disease holistically under the same roof.
• Offer Fertility Preservation Options: Giving women access to ovarian reserve preservation and fertility-sparing treatments.
• Offer many wide range of minimally invasive modalities and techniques for surgical approach and management of endometriosis and it related coexisting diseases
• Prioritize Research and Innovation: Encouraging clinical trials and cutting-edge surgical techniques to improve patient outcomes.

Countries like France, the UK, USA, India and Australia have already implemented specialized endometriosis centres, resulting in faster diagnosis and better long-term outcomes (7). Malaysia, and many other countries, need to follow suit.

Conclusion

Endometriosis is a serious medical condition that affects millions of young women worldwide at their primed age, yet it remains one of the most neglected areas of healthcare. The delayed diagnosis, economic burden, and lack of specialized care all contribute to the suffering of countless women. The establishment of Centres of Excellence for Endometriosis is not just necessary—it is long overdue.

As awareness grows, policymakers, medical professionals, and society must act to ensure that women with endometriosis receive the care, respect, and recognition they deserve.

References

1. Zondervan KT, et al. (2020). Endometriosis. The Lancet, 395(10226), 839-851.
2. Surrey E, Soliman AM, Johnson SJ, et al. (2018). Patient-reported outcomes in endometriosis. Reproductive Sciences, 25(2), 248-262.
3. Ballard K, Lowtan K, Wright J. (2006). Can we delay the diagnosis of endometriosis? BJOG, 113(4), 395-398.
4. Facchin F, Barbara G, Dridi D, et al. (2015). The impact of endometriosis on quality of life. Human Reproduction, 30(5), 1043-1051.
5. Simoens S, Dunselman G, Dirksen C, et al. (2012). The burden of endometriosis: costs and quality of life. Human Reproduction Update, 18(2), 145-155.
6. Lalani S, Choudhury K, Kulkarni S, et al. (2018). Mental health in endometriosis patients. American Journal of Obstetrics & Gynecology, 219(2), 178-187.
7. Moradi M, Parker M, Sneddon A, et al. (2014). Impact of endometriosis diagnosis on women’s lives. BMC Women’s Health, 14(1), 16.