Welcome to Endometriosis Association of Malaysia

Category: Women Share: HerStory

Nadya: Kamu Di Uji Kerana Kamu Istimewa

Saya Nadia, umur sekarang dah masuk 33 tahun. Hidup bersama sama dengan Endometriosis sejak berumur 15tahun lagi. Period normal ketika mula mula datang haid sehingga lah umur 15 tahun, dah ada senggugut, tapi masih mild. Mencecah umur 17 tahun, senggugut semakin teruk, tp saya kerap berjumpe doktor utk chek masalah yg saya hadapi, tp doktor hanya diagnos senggugut sahaja, dan dibekalkan pain killer.

Setiap bulan, 3@4 hari mesti cuti sekolah, sebab kesakitan ketika period tu memang sengsara, rawatan alternatif (islam & cara kampung) saya ade cuba utk kurangkan kesakitan, tp semuanya tak berkesan.

21 tahun ketika itu (2009), saya di Pulau Pinang sambung belajar di Usm. Sakit dah x boleh ditahan lagi, saya minta rakan utk hubungi ambulance dan terus dikejarkan ke hospital besar. Dipendekkan cerita, dengan sebatang kara disana (tanpa keluarga, sebab mereka jauh di Johor, kakak saya dalam perjalanan ke Penang), saya sign sendiri semua borang dan terus masuk ke dewan bedah..masuk jam 9 malam, keluar jam 6 pagi. Semuanya saya harungi sendiri. Doktor sahkan saya menghidap endometriosis stage 4. Itu laparoscopy pertama saya.

Saya terima dengan hati terbuka,sebab saya memang dah tahu saya ada endometriosis (melalui pembacaan sendiri di internet). Malah, doktor juga memberitahu bahawa saya akan susah utk mendapatkan anak, tp hati saya tenang, sebab saya memang dah terima semuanya dengan hati yg redha.

2014 saya berkahwin, dari tahun 2009 sehingga 2014, saya x pernah gagal utk datang temujanji di hospital. Bermacam jenis ubat saya dah telan..dugaan kan..saya ulang alik dari Seremban ke Penang hanya utk temujanji.. 2017 temujanji dipindahkan ke hospital Seremban. Mase tu saya dah disahkan PCOS pula 🤭

IUI pertama gagal..seterusnya saya stop temujanji. 2018 kesakitan waktu period semakin menjadi jadi, saya jadi pengunjung setia bahagian kecemasan di HTJ Seremban..doktor sahkan endometriosis saya 3.5cm dibahagian ovari kanan..

Dah xde rase sedih, x lalu nak menangis, saya kene kuat utk hadapi semua ni kembali.

Hidup dengan endometriosis sangat sangat mencabar, hormon tunggang langgang, lebih2 lagi dengan Ubat Visanne..itu paling mencabar, sebab kene tahan emosi dan memang ade gangguan emosi..hampir setahu lebih dengan visanne, akhirnya doktor stopkan dan beri oralcon.

Hujng tahun 2019 sehingga kini 2020 saya masih dengan Oralcon, dengan pelbagai jenis ubatan lain.

Kawan kawan yang mengharungi kehidupan sama dengan saya, kite perlu kuat, perlu usaha utk mengatasi masalah ni, perlu ade orang yg sangat2 memahami kita (x semua org boleh paham)..kite kene kuat! Saya pernah bekerja sebagai seorang pensyarah, tp malangnya saya kerap cuti sakit sebab senggugut ni lah, jadi majikan pernah menghantar email dan memaklumkan bahawa mereka tidak memerlukan pekerja yang sakit utk berkhidmat..sedih kan?? Tp xmengapa lah, sebab kesakitan yg saya hadapi ni memang sedikit sebanyak menyusahkan orang lain yg sama sama bekerja..saya x pikir panjang tentang masalah kerja ni, sebab saya usaha sendiri utk majukan diri, banyak cara lain kan?

Allah uji sebab dia tahu kite kuat! Kite istimewa utk hadapi penyakit ini.. sabar, berdoa banyak2!

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…..

Penny Lim: My life

Penny Lim, aged 44, has been battling with Endometriosis ever since she was a student. She has severe period cramps monthly. However, she only had her diagnosis done in 2005 – the year she got married. Her first time coming across a disease called “Endometriosis”. She was so afraid and thought she was dying as her CA 125 was quite high. She was suffering from stage 4 of Endometriosis. She has had multiple surgeries along the way and after her 6th year of marriage, she started conceiving after seeking after treatment from Traditional Chinese Medicine (TCM) but she has suffered 3 miscarriages consecutively. All her pregnancies were terminated at 7 weeks.

However, in the year 2014, she managed to conceive naturally and has delivered a healthy baby boy by God’s grace. It has not been an easy journey, but hang on there! Eat healthily, practise healthy lifestyle and stay strong spiritually. Children are from God. He blesses according to His time.   

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