This disease is hard, emotional and constant

I started late with my monthly friend, and knew straight away that something wasn't right. I was bed ridden for 3 days, going through countless sanitary pads and underwear because it was so heavy and was too embarrassed to even leave the house. My mum had endo but even she wasn't sure that what was happening to me was that. We both realized after countless hospital trips because of the pain that something wasn't right and finally demanded an ultrasound when I was 16 after a late night emergency admission. What they found was so mind blowing I felt like it was a medical show episode. Cysts were everywhere over my ovaries and they were bursting; that was causing me the massive pain. I was crying because all I feel like I was made to do was to be a mother and I thought that dream was being taken away from me. Luckily I found a great gynaecologist who acted quickly and after removing the cysts implanted an IUD. That was 7 years and 2 IUDs ago. Since then, I feel in control of my life and body again.

 

I had excruciating pain and heavy bleeding, causing me to double over in pain from cramps. I felt dizzy and emotional all the time and stressed that I was showing my pain or that I was missing so much school because of the pain.

 

I was embarrassed going to friends’ houses to stay because I was worried that I would bleed or have an 'episode'. I felt uncomfortable that someone had to stay home with me because I needed help with everyday tasks such as showering from the pain. I'm scared for my future because I'm worried that I won’t be able to have children and will have to let love go because I will be holding them back.

 

Endometriosis has impacted my job throughout the years, from being a swimming teacher and missing weeks of work and being in childcare and needing time off to have the IUD replaced. I missed a lot of school because of the pain and felt under pressure to catch up all the time I had missed because everyone just thought I had bad periods or was exaggerating.

I am lucky that having an IUD has seemed to stop most of the more difficult symptoms I was suffering. I haven't had a period in the time since I have had these implanted, but I sometimes have break throughs which are very difficult to manage as they are random! I found that using this form of management has helped me, but I do still worry about the effects of this on my body.

 

When I was diagnosed, there was nothing like there is today. No one talked about it, and even the doctor wasn't full of answers to the questions I had. I was grateful to have my mum to get me through, but even my symptoms were different to hers. I think now everyone has information that is correct and that people can relate to.

 

I found the Endometriosis Australia pages super helpful as they were able to assist me with the questions I have and I can connect with people who are in similar situations to me. If others can share stories about their experiences I am more than open because I believe we can get through the tougher times together.

 

To my doctors, thank you for finally helping me figure out what was wrong. I felt like I was going in circles and being dismissed for someone who couldn’t handle pain. But you helped me and saw me through something so unfamiliar to me.

 

For people who don’t suffer from endometriosis you should know it isn’t something you catch, and you can’t catch it. It’s something that needs understanding and something we can’t control.

 

This disease is hard, emotional and constant.

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