Anita's Endometriosis Story
By Anita Fung
Meet Team QENDO! Anita is a QENDO powerhouse, affectionately known amongst us as Queen of Grants for her expertise in finance and helping us find new and innovative avenues to fund programs QENDO delivers to the community. Anita is also part of our support team and EndoSister program, helping others with endometriosis on their journey. In this piece Anita shares her journey to diagnosis and her perspective on managing pain in the workplace in a sector traditionally dominated by men. Thank you Anita.
It was an extremely long process that I had to endure before I was diagnosed with Endometriosis. Throughout high school, I was used to having 7 day periods and bad menstrual cramps. After having my two children, I started to realise that something wasn't right. I had extreme cramping pain, lower back pain that shoots down to my legs. Over the years, I had multiple ultrasounds, told by doctors I had multiple ovarian cysts which would "reduce" over time. Every month, the pain got worse, feeling so helpless, my body had enough and I ended up in hospital. Doctors ran every test possible and suggested that I had appendicitis.
What a relief, I thought. I might just be able to have a normal life. I wanted so badly to be like my friends - to go out and feel great. I wanted so badly to be like my work colleagues - to be focused and get the exciting career or promotion and not have to stop and breathe through the pain shooting through my legs. I realised my tolerance to pain had heightened every birthday that I celebrated - I blamed myself. I seriously thought I was going crazy and people (my family, my manager, my doctors) all silently accused me of making my symptoms up. I must have done something to deserve this pain. I hated being tired half the time, feeling sick but not looking sick - I wanted quality of life.
After taking out my appendix, I was on the road to recovery. But surely, the pain came back after a few months. Just as intense, stopping me from sleeping, eating properly and stopped me in chasing my career dream.
I begged my GP to write me a referral letter (why must I beg?) to see a gynaecologist. I haven't seen my gynaecologist since I had my youngest child. She spoke to me and suggest the Mirena which to help reduce the pain. I practically sat in her office and begged her to book me in for a laparoscopy after reading 20-30 sites online. She responded to me "there is no pathology evidence that you have a condition - there is no need to do a laparoscopy". I desperately wanted to know what was wrong with me. Why do I have to suffer this much? I practically told her that I wanted to do it even if there is nothing found - I just need to know!
After a long surgery, I will remember this day forever. She said to me whilst lying in my recovery bed, "Anita, you were right. I found endometriosis all in your uterus hidden in the muscle lining and outside your right ovary. The scans will not show any signs of this".
My heart sank and stopped for 2 seconds.
I finally discovered that I have Endometriosis.
If I could ask for one wish, I would be to never have any young girls or adults to go through the same experience as I have with delayed diagnosis of Endometriosis. I know now that it is my duty to help raise awareness of this illness and investment in research which will help bridge the gap of this 'taboo' illness in our society today.
I had no support until I found QENDO. I reached out to Jess (QENDO President) and she listened to my story. I found EndoSisters who have been through the same pain and have the same story. There is hope.
Telling people about my illness makes others feel uncomfortable but hiding it makes them doubt me. Why?
I struggle with this because I have had so many challenges throughout the years. I grew up in a Chinese family who don't grasp well with, "let's talk about your period". Oh no, it was such a taboo in our culture that we did not speak a word of it and mum would give me pads and say, there's pain but you will get over it. Then having to attend high school and university - staying focused on my results whilst experiencing pain. Losing my childhood quickly, I had grow up quickly to manage finances and be an interpreter due to my parents' minimal English skills - it was tough. Once I started my career in Banking and Finance 17 years ago, I learnt quickly that it is very hard to pursue a career when you are a woman in Finance. Juggling work life balance, meeting the man of my dreams, starting a family, raising two kids, working full time, then part time, then redundancy, then part time, then back to full time work.
Where do you fit all the endo pain?
Every day I will travel from one work appointment to another by holding my breathe as I let the throbbing pain pass through my body and still smile at the person and say "I'm very good thanks". Or there are some days were I find a corner in the office just to lean my head on the wall, just to breathe as the pain passes.
I would like to encourage people in the workplace to talk about Endometriosis. We don't need you to understand, we don't want you to feel sorry for us. We just need to not feel bad when we have 'pains' or when we need to take personal leave just to rest. I often hear “You feel sick but You don’t look sick”.
Anita Fung
EndoSister and Support Worker, QENDO Grants Coordinator