"'It's just anxiety': How misdiagnosed endometriosis almost killed me."

I was bike riding the French Riviera in France when I first felt it. As I was peddling uphill, I felt something hard push against my thigh. I was in France with a beautiful view and I didn’t want to ruin the moment, so I put aside the pain and kept cycling. It took everybody else in my cycle group 40 minutes to complete the tour, but it took me one hour and a half, and by the end of it I was in agony. I knew something was wrong.

Several days into my trip, the pain started to get worse. I went to a pharmacist and asked for some pain medication. I explained my symptoms to her and she thought I had a cold and gave me strong cough medicine. Twenty Euros later and I was good to go. I eventually managed to get through my 15-day trip – heavily medicated – which helped me ignore my symptoms, but not for long.

A few months later, the pain was back but this time it was met with vomiting and migraines. I took the day off work and headed straight to the doctor who thought I had a really bad urinary tract infection.

After a few days, I could feel that the lump on my lower left side had grown, so I rushed myself to the doctor, yet again.

It’s not just doctors, here’s what men need to understand about endometriosis. 

This time I went in demanding answers. The first doctor I saw told me that it was just my anxiety, and my symptoms were psychosomatic. Many doctors after him said the same thing – they said it was just anxiety manifesting into real-life symptoms, and to seek counselling.

It wasn’t until one day I woke up and was covered in sweat and could barely get out of bed that I knew this was serious. The lump on my left side had grown so big that it felt and looked like I was at least three months pregnant. I was in excruciating pain – pain so bad that didn’t go away no matter how many pain killers I took. I rushed myself to the emergency.

After a six-hour wait in the emergency room, a doctor finally came to see me. The ultra-sound showed there was a 16cm mass on my lower left abdomen, which the doctors had thought was a full bladder. I was in hospital for two days and the doctors tried many different ways to forcibly empty my bladder – which did nothing as the mass was still showing up on the ultrasound.

It wasn’t until the gynaecologist team came to see me that they were able to see that the 16cm mass was actually my left ovary. Finally, some answers, I thought. However, they could not confirm if it was cancer or not.

I then saw three different gynaecologists as an outpatient in the public system. I was told something different each time. The first time they wanted to wait and see what would happen after my next period and refused to put me on the waiting list for laparoscopic surgery, I was prescribed Endone and was sent home. The second doctor said he wanted to do another ultra-sound to have “another look inside.” And the third doctor said it would “just go away by itself.”

Several months passed after my discharge. I still had no solid answers, so I decided to take action.

By this point, I had been living with unbearable pain, and couldn’t wait any longer. I was forced to fork out thousands of dollars to see a private gynaecological surgeon, and within minutes of seeing the scans, he immediately suspected it was endometriosis.

He said the mass looked like it was my ovary filled with a “chocolate cyst” and it needed to be removed immediately, or there would be fatal consequences. I would need two surgeries that would cost almost four thousand dollars each.

After six months and almost $8000, I was diagnosed with stage 4 endometriosis – an illness in which cells similar to those that line the uterus grow in other parts of the body. Not only doesn’t have a cure but affects one in ten Australian women.

After the surgery, I was told the cyst could have burst if I didn't have it drained, and at its size, the consequences could have been fatal.

While I was waiting for a diagnosis, several doctors told me that my case wasn’t urgent enough to be put on the emergency waiting list for laparoscopic surgery.

The public system had failed me – and I am left questioning when it could it fail me again. I'll need several more surgeries in the future, and I will most likely be on year-long waiting lists to get them.

After joining several support groups, I found the online community was filled with hundreds of shock horror stories just like mine.

So, what are the options, I wonder for those women who were unable to have private surgeries?

Why isn’t there more being done to prevent endometriosis from going so long without a proper diagnosis?

To find out more about endometriosis and to see how you can help, visit Endometriosis Australia.