It took 17 years to finally get a diagnosis for endometriosis.

I’m 32 and finally got answers at the end of May this year after going to my GP begging for a hysterectomy.

The myth is that when you have children then it will get better. This is untrue, for me it got worse. My “monthly” pain was worse than labour itself. The pain so intense that I couldn’t walk yet somehow still had to find a way to go to work and get through my day.

I worked out that I was losing over half a litre of blood every time I got my period. I had irregular cycles but they ended up being shorter. I would bleed like a stuck pig for 10-12 days, have seven days (if I was lucky) of no bleeding and then start again. The pain was nearly constant; the longest “cycle” I had was nine months. Nine months of constant bleeding.

READ MORE:

* Don't suffer in silence

* My painful, lifelong curse

* Dear Jacinda, we need your help

At school my friends and I didn’t talk about things like periods. There was a lot of stigma around it for some reason. It took talking to my Canadian friend for me to realise that what I was experiencing was not normal. But getting help from medical professionals was impossible.

A few years ago I went to my GP for help and ended up seeing a doctor who I had never met before. He knew we wanted more children but insisted that I go on the pill. I refused because my experience from various birth controls was horrible. He decided to give me a few days worth of progesterone pills and said that it would “dry you right up”.

I ended up switching to a different practice a couple of years later and was referred to a specialist at the local hospital. The experience there was much worse. When I told him about how much pain I was in, he told me I was lying. When I told him how much I was bleeding he told me I was lying (referring to blood tests that were over a year old). He told me I had zero symptoms of endometriosis and that my polycystic ovary syndrome (PCOS) that he had diagnosed over a year before (for fertility issues) was now gone. He told me that all my issues were because I was overweight and kept going on and on about how much I needed to lose.

Of course I knew I was overweight. Of course I knew I needed to (and desperately wanted to) lose that weight. But he wouldn’t let me ask questions, wouldn’t let me speak, wouldn’t let me give my history. Wouldn’t listen when I told him that just a few short years ago I used to walk more that 10km a day. Used to run, ride my bike, swim, workout. I used to be able to lose weight so quickly, I was fit and strong, and suddenly all those efforts made me gain it rapidly. I was in debilitating pain and had no quality of life.

By this stage I was sobbing (I’m not a cryer). I had given up the small amount of hope I had. I had gone there and asked if he could give me a hysterectomy because of the pain. I left unheard and labelled as a maker of my own pain. Told it was all in my head and my fault. Rather than see the weight as a symptom, I was told I wasn’t worth medical help because of the amount of fat I have inside my body.

I was very fortunate that a couple of days beforehand I had found a support group for sufferers, run by a surgeon in the United States who specialises in removing endometriosis. He has very high success rates and many of his patients end up being able to have children.

On this page I got chatting to a young woman who had a very similar story to my own (minus the weight side of things). She told me she was going to pay for me to go see a specialist up in Auckland (she was in the US) because I needed help. I’ve never taken money from anyone before but she insisted and I was desperate.

I’m so glad she insisted.

I ended up seeing a private specialist who gave me a diagnosis of endometriosis and PCOS. Not only that, but he listened. He told me that I’m young, I have my whole life ahead of me and I don’t need to be in this kind of pain anymore. He also gave me some practical tools on how to make my body work for me again. How to get healthy and lose weight. He validated me and gave me my life back!

I still have pain, I still struggle with the bloating (I go from having a flat stomach to literally looking nine months pregnant within a couple of hours), I still get tired - but it’s much more manageable and I’m a different (and smaller) person to what I was three-and-a-half months ago.