Endo what?

Diagnosed 10 years ago at age 25 I went to a gynae as I was not able to fall pregnant. I had always suffered from excruciating period pain, cysts rupturing, which then progressed into ovulation and 24/7 pain, I was only having around 5 days per month without pain. Feeling like my ovaries had barbed wire around them with weights attached while being stabbed.

I had my first exploratory lap in 2011, only for them to close me back up and tell me I had endo. When I asked why they didn't remove it they said I would need to give permission, what a waste of surgery and recovery I was so frustrated. I was then put back on the public waitlist for 8 months until they could get me in for a treatment surgery. I remember saying endo what? What's that? I had no idea about what to do so I let them do the surgery because they were the professionals, right? I had an ablation where they burn it off my uterus, bowel and bladder. My periods were still painful so I went back to the waiting list to be looked at again, this followed by three more ablation type surgeries.

I decided to give up on trying to have a baby and try the Mirena as per their suggestion but after four weeks off work my body painfully rejected it and I had it removed in the ER. Fast forward to 2022, I've had around seven surgeries and only a couple years relief at a time before it grows back. I always found it hard to get pain killers from doctors even with diagnosis and after my pain specialist was out of options, even though I only needed four endone/month. I started reading a support group website where I read that the gold standard for treating endo is excision. It was explained that endo lesions are like a weed if they cut by the root they will keep growing. I am now 8 months post excision surgery with a specialist costing $8000 & have so far had the most relief I've ever had with abdomen pain and minimal period pain.

Throughout the last six years I was a full-time retail manager on my feet all day, I was constantly relying on my annual leave to have sick days, it was very hard to explain to management every 25 days I will take off 3 days and more for doctor appointments. When it came on at work I had to immediately take Endone & lay on the floor in the back room until it subsided enough for me to drive home. I felt judged and depressed as no one really understood what I was going through. I live one week at a time and now work part time trying to control the chronic fatigue that comes with my endo.

My husband of 10 years & I are starting IVF in a few weeks. Fingers and toes crossed.