“What is wrong with you? Period pain is normal”. Women are often told that the pain they experience during their period should be part of their lives, and they should just live with the pain. Many ignored their painful periods thinking that it is nothing serious until the next cycle. But what if the pain they are experiencing affects their daily routine to the point that they are unable to be productive? Should they still bear the pain and toughen up? What if it is endometriosis?
Among gynecologists, endometriosis is a common condition that causes pain and infertility. It can lead to multiple surgeries with a consequent risk of impaired fertility and quality of life– and yet the term ‘Endometriosis’ is still foreign to the general public. This could be due to the pain often being misinterpreted as just period pain. Worst still, coupled with the taboo associated with periods, awareness in Malaysia is alarmingly low.
Physical pain aside, endometriosis comes with a great deal of emotional burden. As awareness is low, not many are able to empathize with women who have this condition. Relationship problems may also arise due to fertility problems. On top of that, the unbearable pain and excessive bleeding affect her productivity and career prospects.
As a patient myself, the worst part of the ordeal was convincing people that the pain is real. It wasn’t until I turned 27, nine years after the onset of my symptoms, that I was finally told that I have endometriosis. Since being diagnosed, I went through repeated surgeries, faced huge challenges in conceiving, and was constantly on pain and hormonal medication to manage my condition. After suffering from endometriosis for 26 years, alone and without the necessary help and support from society, speaking up on behalf of patients is the only option to raise awareness on endometriosis and put a face on the debilitating effects of this condition.
Now, I am part of the community, helping other women, especially young girls break the barrier of speaking about menstrual health. As part of the community in Persatuan Endometriosis Malaysia (MyEndosis), the mission of the association is to provide emotional support and information to women who suffer from endometriosis. Belonging to a community has definitely helped these women as they are able to share their stories and throw support for each other without fear of judgment.
Besides this, the aim of the association is to create better awareness of this condition amongst the general public and women with endometriosis by organizing talks and workshops for patients as well as Malaysians. The most important challenge is to inform society that endometriosis is a lifelong condition that should be managed and monitored closely by health care practitioners.
However, due to the financial constraints faced by the association, the progress is slow. With the much-needed financial help, my hope and dream for the year 2021 would be a chance to help unite Malaysian women with endometriosis and their supporters to take a stand against ignorance on endometriosis.
Hopes and Dreams Contest Participant