New endometriosis patient support website launched

A new patient-centred website for Malaysians with endometriosis has been launched by the Endometriosis Association of Malaysia (MyEndosis).

Developed with the support of Bayer Co. (Malaysia) Sdn Bhd, the website (http://myendosis.org) provides information on disease symptoms, diagnosis, and treatment options, as well as patient testimonials and connection to peer support.

“A lack of awareness of endometriosis and social taboos surrounding the disease are common factors associated with the delay in seeking treatment,” said MyEndosis founder and president Surita Mogan. “Many women live in silence and pain because they don’t know what is normal and what isn’t when it comes to menstrual health.”

Speaking at its official launch, Surita said that the website was the first to be managed purely by patients and caregivers. Currently accessible in Bahasa Malaysia and English, the association aims to add Chinese and Vietnamese translations of site content in future.

“The website will also be a catalyst for us to launch our MyEndosis National Survey in October 2020,” said Surita. “This survey will give us statistics from all states in Malaysia in order for us to push for acknowledgement from government ministries and agencies so we have a better healthcare plan to help patients financially and emotionally.”

Breaking the silence

At the same event, consultant obstetrician and gynaecologist Dr Imelda Balchin highlighted that it can take up to 11 years for patients with pelvic pain to receive an endometriosis diagnosis. [Am J Obstet Gynecol 2019;220(4):354.e1-354.e12]

“Endometriosis affects one-in-ten women during their reproductive years, yet not many are aware of what [it] entails and how it can be managed,” said Imelda. “Although symptoms may vary in type and severity, the pain can be both physically and mentally exhausting, leaving patients feeling helpless and overwhelmed.”

While there are no official statistics or large-scale studies on prevalence or the delays in diagnosis experienced in Malaysia, at least 2,500 individuals have joined MyEndosis’ Facebook support group since its inception in March 2014. Through a preliminary study of 30 women conducted in August 2020, MyEndosis also reported that a third of respondents endured symptoms for over 9 years before seeking treatment.

Closing the treatment gap

When asked about how GPs could support patients, consultant obstetrician and gynaecologist Dr Patricia Lim Su-Lyn said that it was important to listen to their history, particularly descriptions of debilitating period symptoms, and focus on their impact on quality of life.

“Even if [gynaecologists] do not find any signs of endometriosis on ultrasound [scan] or raised CA-125* levels [in the patient], we may still empirically opt to treat the patient’s case as endometriosis to see if they benefit from any treatment,” said Lim. She added that GPs with the means to do so could conduct ultrasound scans to detect ovarian cysts or blood tests to check the patient’s CA-125 levels.

On the same topic, Imelda emphasized the use of accessible language and local culture in conversations about the disease, noting that while scientific terms such as ‘endometriosis’ itself could be obtuse for most people, colloquial names such as ‘senggugut’ were often more quickly understood by patients and their families.