Raising awareness of endometriosis

In conjunction with International Women's Day 2022 in March and Endometriosis Month (EndoMarch), UTAR Centre for Media and Communication Research (CMCR), together with Persatuan Endometriosis Malaysia (MyEndosis) and Gleneagles Hospital, organised a talk titled Endometriosis: A HR Matter on addressing chronic period pain at work and how it affects women in the workplace and their productivity.  

Endometriosis is a disease where tissue like the lining of the uterus grows outside the uterus, causing pain and infertility. Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally. It is a chronic disease 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.

The talk, which was conducted on 31 March 2022 via Zoom, highlighted the challenges faced by women in the workforce who suffer from chronic pain and the myth about it. The aim of the talk was to raise awareness among human resource practitioners and employers about endometriosis that affects women in the workplace and their productivity and help them understand endometriosis and how they can help their employees during the difficult period besides being more sympathetic and supportive of women with chronic pain at work. 

The talk commenced with a welcome speech by Gleneagles Hospital Medini Johor Chief Executive Officer Dr Kamal Amzan, followed by an opening remark on #Breakthemyth Campaign by MyEndosis Medical Advisor Dr Sharifah Halimah Jaafar. The talk featured four speakers, namely Universiti Kebangsaan Malaysia Medical Centre (UKMMC) Consultant Obstetrician and Gynaecologist Assoc Prof Dr Ng Beng Kwang, MyEndosis President-cum-UTAR Faculty of Creative Industries (FCI) lecturer Surita Mogan, Gleneagles Hospital Medini Johor Consultant Psychiatrist Dr Abdul Kadir Abu Bakar and Dr Sharifah. 

In his presentation Endometriosis: Impact on Women’s Health and Productivity, Dr Ng explained what is endometriosis and its impacts on women's health. He mentioned that there was no permanent cure for endometriosis. The aims of the relevant treatment were to alleviate pain and other symptoms, reduce lesions, restore fertility, avoid recurrence, improve quality of life, as well as reduce the number of unnecessary surgeries and prevent future surgeries. He shared the principles of managing endometriosis and advised women to seek doctors’ help so that the endometriosis can be diagnosed and treated early. “We also counsel patients regarding the needs for a life-long management plan, and maximise medical therapy and minimise surgery. Try to prevent and treat recurrence, and maintain long-term therapy,” he said.

On the other hand, Dr Sharifah gave her presentation on How to Support Women with Chronic Pain at the Workplace and Reduce Productivity Loss. She talked about the burden of endometriosis on girls and women and shared the signs and symptoms of the disease. She mentioned that the cause of the disease is still largely unknown. She pointed out the fact that patients with endometriosis face a diagnostic delay due to the acceptance of symptoms and misdiagnosis. “Women wait three to nine years before seeking medical attention,” she said. She also shared some research revealing that the delays were found to be common and the symptoms are normalised which resulted in women feeling ignored and disbelieved. “In fact, some of the doctors were reported lacking knowledge, awareness and sympathy and displaying attitudes that perpetuate myths about endometriosis,” she added. 

Furthermore, she discussed the stigma associated with endometriosis in terms of the effect of normalisation and the invalidation of symptoms, and the effect of gender stereotyping and social taboo. She then talked about how individuals and organisations can help a patient with endometriosis. “Your understanding and support as an individual or organisation will make a great difference in their well-being and productivity at work,” she said. 

Dr Abdul Kadir, in his presentation Effect of Chronic Pain on Mental Health among Working Women with Endometriosis, talked about psychosomatic medicine which is an area of scientific investigation concerned with the relationship between psychological factors and phenomena in general and disease pathogenesis in particular. He shared the major trends in psychosomatic medicine and what are the psychological factors affecting medical conditions. He explained the stress theory, and explained how endocrine and immune responses to stress. According to him, endometriosis is related to a wide range of psychiatric symptoms, especially depression, anxiety, psychosocial stress and a poor quality of life. “The treatment can be complex because it takes into account side effects of medication, the anatomic type of endometriosis, the role of previous surgery, infertility and future fertility desires.” Furthermore, he shared some tips on managing stress and gave some self-management strategies. 

The talk continued with a presentation on Challenges Faced by Women with Endometriosis at the Workplace by Surita. In her presentation, she first shared the aims of MyEndosis, which were to provide emotional support and information to women who suffer from endometriosis as well as to provide a better awareness of this illness, especially among the general public. Surita is also an endometriosis fighter. She pointed out that many women with endometriosis suffer in silence and people in Malaysia lack awareness of the disease. “Women with endometriosis are marginalised and pressed by society because there is a strong assumption that we are lying or the assumption that we are exaggerating our pain. Therefore, talks such as this, would hopefully change the perception of employers having a patient like me,” she said. She further shared the challenges faced by women with endometriosis and explained how an organisation could help them with emotional and physical support. 

A Q&A session and a photography session were held before the talk ended. There was also a quiz session for the participants where two winners who answer correctly the quiz would win a staycation voucher at a 5-star hotel for two days one night.