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Ghanthimathi: My journey with Endometriosis

I was an happy and active child until I reached puberty at the age of 12. The next month of period came with extreme pain and heavy flow. For a child I could not understand why I am having this monstrous pain. People surround me said “Oh, this is normal to have pain during pain” . My sisters and friends do not have it. I felt not normal. I could not express how much pain it was. It hindered me to be active in sports as I constantly faint in the field with pain. I was send for counselling in school as I was thought to fake the pain. I was told I was faking the pain at home to get away from house work. I could not explain how painful it was. I cried inside. A child…..in woman’s body.

At the age of 17, my mother brought to consult a gynaecologist. He said “This is normal” and gave me ponstan. I thought ponstan was my answer until I develop rashes on my chest. Allergy reaction of ponstan. My mother tried Malay and Indian traditional remedy. None worked.

Years goes by with constant battle with the pain and isolation, at the age of 26, I was visiting an gynaecologist as part of my job. I fainted there due to excruciating pain. The gynaecologist did ultrasound on me and found cyst in my uterus. And she said “You have Endometriosis”. For the first time in my life I heard that word and finally got a name for my condition.  After 14 years…..

I was prescribed with Loette, oral contraceptive pill and tramadol. As job took me to another place, with stress, the pain was unbearable again. Many times I was rush to ER for tremendous pain. Very less attention was given to patient with Endometriosis in ER. The doctor there seems no convinced with the pain. Until one of the doctor discovered that my uterus was contracting. She told me that “Your pain is like labour pain”. I was shocked. Now, I know how to describe my pain. This is after 20 years.

After that I went through laparoscopy, Zoladex injection, Visanne and painkillers over painkillers. Over years, the gynaecologist found that my Endometriosis has progress to Adenomyosis. The battle still continues.

Working become difficult with Endometriosis. No one understood your condition at work. Important dates at work will always overlap with period dates. It was very devastating. 

I first saw an Endometriosis related event in newspaper in year 2015. I followed them closely until I join their event in 2016. I was excited see people with my condition and speaks the same language with me. People who listen and do not judge me. People who cares and empathize. I felt I as though I return “home”. MyEndosis was a support group that I was looking for 17 years. I found them, and obtain so much knowledge and support from them. They advocate to create awareness of Endometriosis. Though this disease cause so much psychology and health stress to me, but it also lead me to meet wonderful people who are on serious mission.  who are doing wonder job. I want to be part of this noble quest…..

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