Malaysians can now have better access to information about endometriosis with the launch of MyEndosis.org website developed by Endometriosis Association of Malaysia (MyEndosis) and supported by Bayer Co. (Malaysia) Sdn Bhd.

Endometriosis is an inflammatory condition that occurs when the endometrium — a layer of tissue that normally lines the inside of the uterus — grows outside the womb in other tissues or organs.

Common symptoms include chronic pelvic pain, period pain, pain during or after sexual activity, and infertility.

Surita Mogan, Founder and President of MyEndosis, who is an endometriosis patient herself said, “A lack of awareness of endometriosis and social taboos surrounding the disease are the common factors associated with the delay in seeking treatment. 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.”

Dr Imelda Balchin, Consultant Obstetrician & Gynaecologist, KPJ Damansara Specialist Hospital who was speaking at the event said “Endometriosis affects one in 10 women during their reproductive years, yet not many are aware of what the condition entails and how it can be managed. Endometriosis is a chronic and painful disease, which can have debilitating effects on fertility and quality of life of patients during their prime and most productive years. Although the symptoms may vary in type and severity, the pain can be both physically and mentally exhausting, leaving patients feeling helpless and overwhelmed.”

She added that studies have shown it can take up to eleven years for a patient suffering from pelvic pain to be diagnosed with endometriosis.³ Therefore, it is important for women with symptoms suspicious of endometriosis not to suffer in silence and seek medical attention as early as possible.

Relating her experience and journey living with endometriosis was Ghanthimathi Subramaniam, 47 years old, who started experiencing severe period pain at the age of 12. The pain only got worse over the years to the point of fainting, but she was only prescribed pain killers and being told by her doctors that these were normal period pain symptoms. She battled with her pain in isolation until she was finally diagnosed with endometriosis at the age of 26. Over the years, her condition progressed and had a severe impact on her quality of life.

Dr. Patricia Lim Su-Lyn, Consultant Obstretician and Gynaecologist, KPJ Tawakal KL Specialist Hospital is all too familiar with the underdiagnosis and undertreatment of endometriosis. She has seen many patients like Ghanthimathi who by the time they do eventually get diagnosed, they already have stage 3 or 4 endometriosis. She highlighted on the early management of endometriosis to ensure that it doesn’t lead up to severity of the disease.

At present, there is neither a known permanent cure for endometiosis nor a therapy that may prevent disease progression, but treatment options are available that can relieve the symptoms, slow down the progression and prevent recurrence of endometriosis.

“The aim in treating a woman suffering from endometriosis is to relieve pain, slow the growth of the endometrium-like tissue, improve or protect fertility, and prevent the disease from recurring. There are effective treatment options for endometriosis that can range from hormonal therapies that aim to control the development of endometrial tissues to hysterectomies or removal of uterus via surgery,” said Dr Patricia.

“It is important for patients to discuss with their Obstetrician & Gynaecologist on a long-term management plan so that the condition does not worsen and recur as well as to prevent more surgeries. Up to 50% of infertility is due to endometriosis¹,” added Dr. Patricia.

Commenting on the new website, Surita Mogan said, “Today, MyEndosis is taking its awareness-building efforts up a notch by launching MyEndosis.org website to promote greater awareness of endometriosis, not just among women. Everyone should know about endometriosis. By starting a conversation about endometriosis we can raise awareness, end the stigma, and break down barriers around this disease.”

Elaborating on Bayer’s support towards the website, Dr. Vincent Ruland, Country Division Head for Pharmaceuticals Division, Singapore, Malaysia and Brunei said, “Many women living with endometriosis are living life to the fullest after being diagnosed because they are receiving the right treatment. Bayer has a long history in women’s health and is delighted to be able to help women better manage this long-term chronic and complex condition by driving innovation for women’s gynaecological health needs worldwide. Bayer is pleased to support MyEndosis in its efforts to heighten awareness and educate the public about this medical condition. Together, we can help end the silence on endometriosis.”