'I had a hysterectomy at 20'

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 Photo: Getty Images

I started taking the contraceptive pill when I was 15. I soon came to the realisation that if you missed the 'sugar pills' and continued to take the regular pills you would skip your period.

After a year this little trick no longer worked. I asked my friends about it and they shrugged it off. We were young and didn't know much about the female body, so how were we to know any better?

They suggested that if I were to do it for too long it would lose its effect and that's why I was now having these symptoms.

At this stage, I thought it was typical to bleed while regularly taking your pills. I would be keeled over in gut-wrenching pain on the floor, unable to move, but thought this was standard.

It occurred to me that it may be time to tell Mum. She booked me to see her gynaecologist, who told me I had endometriosis and needed an operation.

This news wasn't so bad, I thought to myself. Naivety can be bliss for a time. 

After my surgery, my gynaecologist told me I had stage four endometriosis. I knew this was not good news, but didn't grasp until later just how detrimental it was, having the disease at its most advanced stage so young in life.

The next two years were similar to a miasma. I was in and out of the gynaecologist's office and had three gynaecological endoscopic surgeries.

My main memories were of being curled up in a ball on the floor, unable to move some mornings. I'd be trying to get ready for school, so exasperated that I just couldn't muster the strength to get up.

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At one point, there was no reprieve - I was bleeding every single day for 10 months straight.

What that does to your health and body is indescribable.

The day that made up my mind

I graduated high school and knew exactly what I wanted to do with my life - I wanted to become a clinical psychologist. I started university.

One day I was feeling fortunate as I hadn't bled for 48 hours. But after a university lecture, when I got up to leave, a hot flush washed over me. I felt as if I had haemorrhaged out of my body.

I ran to the toilet, locked myself in the bathroom, and cleaned away the trail of blood as best I could.

I rang my mother and told her to book me in with the gynaecologist as I could not live like this for a moment longer. I knew precisely what I was going to do. Now I just had to tell my partner.

He looked me in the eyes and told me I was more important to him than having children. At that moment, I felt so solemn. We were so young and thought we would be together forever. I knew he would be a good father one day, and he did dream of having children. Yet he decided to stick by me.

My gynaecologist was very supportive of my decision to have a hysterectomy, as there was no cure for what I had and I had endured the suffering for long enough. My case was just too extreme. We had tried drugs, we had tried a device, we had tried operations and nothing slowed it down. Each time it came back harder.

I was told I was the youngest women in New Zealand to have this surgery and had to be signed off by another gynaecologist, who asked me various questions to make sure I was of sound mind to make such a decision. 

I still remember the baby photos she had hanging on the wall, almost as if they were there to taunt or test me, although I'm sure that wasn't the case. She posed the idea of trying to conceive with my partner within the next few months and then getting the surgery, as it would be my only chance to conceive - if I could even conceive.

Without flinching, I said no: I needed to do this for my own quality of life. I was at a point where I couldn't support a child the way I'd dreamt of raising one.

Intolerable pain

Within a few months I was having surgery with two gynaecologists operating on me. I was off university and my part-time job for six weeks.

It was the most intolerable pain I have ever felt; the type of pain that makes your body reject every movement, sound, drug and breath.

I thank my lucky stars I will never have to experience that again.

I would have not got through it if not for my family, my partner and best friend at the time. A support network is imperative.

It would be nice to think this was the end of my story, yet by the age of 21 I was back in surgery having my ovaries out. They were polycystic and poisoning my body, so there was no point trying to preserve them.

I was half-sitting in my hospital bed, half-crouched over in pain, and vomiting my guts out with no-one else around when the extent of exactly what I was going through began to wash over me.

After that point I changed. I was more taciturn. I distanced myself from people. It was almost like a switch flicked off and the light went out. It hasn't come back on since.

The most important issue

The hardest part is exploring new relationships and having to tell your potential partner you're infertile. Not that there's a chance you may be infertile or don't want to have children, but there is 100 per cent no chance you will bear a human child. It's the make or break part.

It's a huge relief when they accept you for who you are, but there is always that fear in the back of your mind that one day they will come to their senses and leave because of it.

Later in life, when I have broached the subject of children, I'm reminded how hard it is to adopt children in this country. Even fleeting comments like "you're lucky you can't have children" cut to the bone when I know I shouldn't let them.

Now I can comprehend just how important it is for people to know that endometriosis does need to be talked about and shared, whether it is couples facing infertility issues, young girls/women facing endometriosis, or whatever your issue may be.

It was such a huge thing to go through, especially being so young, and it really can affect your life. Try to deal with it face on, surround yourself with a support network and allow yourself time to properly grieve in your own way.  

If, as individuals, we don't take the time to do this, we lose a part of ourselves.

I have lost a lot of opportunities in my life and given up a lot. Take it from a woman who has travelled the road.

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