Endometriosis or endo for short, is one of those things you think will never happen to you, and when my doctor told me I have very severe endometriosis, stage 4, the worst kind, she recommended me for surgery as a priority 1 which at the time was the end of covid and only life-threatening cases were a priority 1.
The endo had fused my bowel and my uterus together and I was bleeding with pain every day, while doing treatment for anemia, meant my treatment wasn’t working, and the anemia, and my quality of life, was getting worse.
It also meant I wouldn’t be able to fall pregnant.
I’ve struggled with painful periods since they started and was advised to take paracetamol or ibuprofen and use a heat pack to manage the pain.
In my late teens I started taking ‘the pill’ to help manage my symptoms which has its own set of health implications, and ultimately nothing helped.
In my early 20’s I was told I have dysmenorrhea (very painful periods) and the treatment/management didn’t change.
It wasn’t until my symptoms were life threatening (untreated) in my 30’s, that I was sent for an MRI which confirmed endometriosis (tissue outside the uterus) and adenomyosis (tissue inside the walls of the uterus, not inside the uterus).
I want to encourage women and people with uteruses to please get more opinions and grow your knowledge to make informed decisions.
If someone tells you something you don’t have to accept it as your reality, you can continue seeking answers until you’re satisfied.
What helped me was seeking out opinions and lived experiences from people who have the same symptoms as me, to find out what they did to help.
That’s how I became confident enough to say enough is enough and went back to the doctor to ask for a referral to a specialist as it was impacting my quality of life too much.
I was in surgery two weeks after I was diagnosed with endo stage 4.
I was lucky I had wonderful medical professionals looking after me the whole time (private health).
It’s keyhole surgery, so ‘noninvasive’, however I had severe pain and discomfort, and my doctor reminded me I had an extremely severe case of endo, and the surgery was extensive, so there’d be far more discomfort and pain for me than an average case.
I had a long rough recovery for 8 weeks, off work the first two weeks, and light duties going forward.
Since having surgery, the anemia is under control and the constant bleeding and pain has stopped.
This has changed my life in the way I’ve been able to push myself and gain improved physical health as I have more energy, and strength, and I recover faster following physical activity.
To manage my ongoing endo pain and dysmenorrhea the doctor prescribed 25mg amitriptyline and Slinda to stop the endo from growing back.
Slinda is a new drug and isn’t covered by the PBS or health insurance (for the first year I used it), so cost me $83 out of pocket for 3 months.
Now that my insurance covers Slinda I claim back up to the total of my annual prescription allowance.
The out of pocket for surgery was roughly $1000, not including private health insurance premiums, the health insurance only covered my stay in hospital/theater/medication not the surgeons fees. I had both my specialist doctor/surgeon, and a bowel surgeon.
In addition to the endo, adenomyosis, dysmenorrhea and anaemia diagnosis, I also have fibromyalgia (chronic pain & fatigue), depression, and anxiety.
All ‘n’ all, I’m much happier now that I’m getting the right help for all my health conditions and look forward to the future to better myself again.
Picture is me after surgery, relieved I got through it 
16th Feb 2022