"My Adenomyosis Journey That Never Ends"

25 years ago I started experiencing very heavy, prolonged and painful menstrual bleeding. My symptoms have been gradually getting worse and worse over time. I have been attempting to get treatment for a very long time. I have repeatedly received what I feel has been misogynistic abuse and neglect instead of treatment.

Several years ago I finally received a diagnosis of adenomyosis. I have tried all the available medications to treat my condition, none of them have worked. I require surgery. This surgery was supposed to happen 6 years ago, but due to a series of incidents of, in my opinion, misogynistic abuse and neglect, resulting in me being unable to receive this surgery as a public or private patient, the specialist I was seeing at the time told me they would refer me to their public surgery list at Fiona Stanley Hospital as a Category 2 patient.

After 2 years of waiting I finally got an appointment letter for Gynaecological services at FSH. At this appointment I saw a completely different surgeon who had no knowledge of my condition. They indicated to me that I was still a Category 2 patient with an indicative treatment window of 3 months, although I was warned that surgery wait times are still being effected by Covid, resulting in even longer wait times.

A week later I received a letter saying that I had been placed on the wait list for surgery at Fremantle Hospital as a Category 3 patient with an indicative treatment window of 365 days. With the current state of wait lists it will likely be significantly longer than 365 days.

I experience bleeding that is the equivalent of one entire normal period per day, every day for a fortnight, every other fortnight. It is completely uncontrolled, and the volume is getting worse.

My pain has been repeatedly dismissed and I’ve been left to try to treat it myself with OTC paracetamol, NSAIDs, and a “healthy lifestyle”, event though these are woefully inadequate.

My condition is severe enough to impact my ability to participate in work and leisure activities.

I feel I have been abused, abandoned and left by a health system that I feel sees me as nothing more than an incubator. Due to what appears to be an administrative screw up, I have been kicked to the back of the queue, again, and deprioritised, again.

Why do the 6 years I have already spent waiting not count? Why don’t the 2 years I’ve spent waiting to even see someone at this specific hospital not count? Why doesn’t the time already served count towards my place in the wait-list?

I just want to be able to start living my life. I have been suffering for 25 years.