Why Us? A Tale of Cancer and Endometriosis...
Over the past few weeks, I have posted on social media some quite confronting questions and opinions on female reproductive health. This is a subject very close to my heart and here's why.
In July 2015, I was diagnosed with Stage 1C Ovarian Cancer. I was 27 with no prior genetic history and had had no issues with my menstrual cycle or even falling pregnant. My period came every 28 days.
But fate dealt me a harsh card and I was another young women who had been diagnosed with a serious and potentially terminal, reproductive disease. I was one of the lucky ones as they found my cancer after I had just given birth to my son. He saved my life. I had surgical treatment and chemo or radiation wasn't required. Not that it would have worked as the tumour I had doesn't respond to such treatment. I had my left ovary and tube removed as well as my appendix.
I went through months of testing. Blood tests, ultrasounds, many visits to my oncologist. The anxiety wrecked me every quarter, as I waited to get my CA125 levels or waiting to hear from my Doctor that I had another cyst on my ovary. Once again, I dodged a bullet and didn't have any reoccurrence.
After the birth of my daughter in May 2017, I was asked at every visit over an 18 month period, if this was the end of my baby journey. After talking to my oncologist and Professor John Eden (the guru on all things hormones) we decided it was time to have a full and complete hysterectomy. Removal of my ovary, cervix and uterus.
The thought of going through medical menopause at 31 devastated me and I almost changed my mind on several occasions. It destroyed me mentally and my family and friends didn't know me anymore. After many months of back and forth we booked the surgery in for April 16th 2019.
I tried to ignore the weeks and days fly by as the surgery grew closer and closer but eventually, the date rolled around and I was prepped, in my hospital gown, ready for surgery. As they wheeled me into theatre, I looked at my husband standing at the end of the corridor crying and balled my eyes out.
Today is the 5th May. It's been 19 days since my surgery. Recovery was rough. I didn't get out of bed for more then 10 minutes at a time for 2 weeks. While in hospital though, I met a brave and beautiful woman named Jasmine. She was 24 and she had just come out of surgery the day after me.
After I offered for her borrow my phone to contact her boyfriend, we became instant friends and roomies. Most of the time, our hospital divider curtains were open so we could get to know each other and swap our nightmarish tales of reproductive disease. Jasmine suffers from severe endometriosis and cysts. It took her 7 years. Yes you read right, 7 years to find a gynaecologist who took her seriously enough to help her with her excruciating pain. She has to organise her social life and even her vacations around her cycle because of how bad it is. A lot of people didn't believe her, assuming she was making excuses. GP's even told her it was "normal" to feel that way. Normal? Seriously?
Jasmine wrote a very emotional blog on her journey with endo. Below is the link. Give it a read: https://sarcasmmeetsendometriosisblog.home.blog/2019/05/04/day-3/
My question to you this is; What the actual hell is going on? Endometriosis wasn't heard of when I was 15. Even when I was 24, Jasmine's age, it wasn't an epidemic amongst young women between the ages of 15-40.
What are we eating? What are we ingesting? What's in our environment? Even our medications? What has changed in the past 15 years for this disease to become so severe? So severe, that every woman I personally know who suffers from it, (which is 1 in every 3 I feel) talk of how one week out of every four, they're incapacitated in excruciating pain, nausea, headaches and vomiting. This includes my little sister who is also 24. She's had cysts, persistent endo and a twisted ovary.
Some of my friends bleed for weeks on end. One lady I spoke to requires regular transfusions of blood and iron because of her endometriosis and the amount of clots and blood, she loses each month. Why?
A few days ago, I received my pathology reports back from my surgery. Once again, I dodged the cancer bullet. But you know what I didn't dodge? Endometriosis. Yep, I had started to form endo on one side on my uterus. I had noticed before my surgery that my periods were becoming increasingly more painful but I would take panadol, grin and bear it. I also has pre-cancerous fibroids growing. So if I hadn't of had the surgery, where would I have been in a few years? In chemo? Back in surgery removing the endo? Who knows. What I do know, is that I'm lucky it didn't become worse.
More awareness needs to be raised. More needs to be done. My heart is breaking that this is the life and future of our women. And maybe even my daughter.
Make sure to spread the word. Become more aware. Be more empathetic to sufferers. One day it could be you or a loved one that has to hop on this rollercoaster and you'll wish you'd known more about it.