I'm 20-years-old and endometriosis is ruining my life


What were you doing when you were 20-years-old?

My dad, like most people, was living his best life down in Dunedin and was half way through his teaching degree while my mum was working overseas. Growing up, I always thought that your 20s are meant to be the best years of your life, but for me, that's not the case.

I'm 20-years-old and my chronic illness is ruining my life. I have endometriosis - a disease with no known cause or cure and, as you can imagine, it makes life pretty damn hard in many ways.

Getting out of bed most days is a challenge but on a good day I wake up, take some pain killers and move on with my day. However, on a bad day, the painkillers don't work and I end up stranded in bed. Some days I can't even walk to the bathroom myself or have a shower and, on other days, if I do manage to make it out the door, I'm scared the pain could kick back in at any second. There have been many times where I was fine one minute and then doubled over, passing out from pain the next.

I am also constantly faced with toilet troubles. My bowel movements are never regular but are always painful. If I eat the wrong thing, I am punished with pain for the rest of the day and occasionally, I pass out from the pain of urinating. Sticking to the recommended FODMAP diet is a challenge, but it's worth it to try and keep my Irritable Bowel Syndrome (exacerbated by my endo) at ease. Unfortunately, following this diet makes eating out socially quite difficult.

I am a rubbish friend. I can't make plans because I have no clue whether I am going to be well enough, but I can't be spontaneous either. There have been numerous times where I have cancelled on friends or missed out on events I was really looking forward to, just because I was too sick to go. I can't go out partying or clubbing because if I'm standing too long I'll get sore, carbonated and alcoholic drinks  aggravate my symptoms and the line to the bathroom is usually long, risking accidents happening for me.

One of the symptoms of endometriosis that is often not discussed is the pain associated with intercourse. Having sex really hurts, but I'm lucky enough to have a partner who is supportive. Unfortunately, I still have constant guilt that I'm letting him down. 

I feel like I'm a burden to the people who are closest to me as I rely so heavily on them to take care of me. When I'm in pain, I'm unable to get things done for myself, which means a lot of my independence is gone. When I'm sick, I can't shower myself or walk to the bathroom alone, which most 20-year-olds are capable of doing. I hate that my parents and partner have to take time out of their lives to babysit me. If I was normal, I could just do it myself.

Usually when people are sick they go to the doctor, get help and get better. Whereas when I go to the doctor I am often told "there's nothing more that we can do". 


Last year I had three surgeries to try get my endo under control and I have recently spent a week in hospital where I found out I am going to need a fourth. For those going through the public health system, this means being put on endless waitlists just to get help. The truth is, endometriosis is a big waiting game with hundreds of doctor and emergency room trips in between.

I am currently taking a collection of different medications everyday, just to keep me functioning. It's quite overwhelming and difficult, especially when I need to rush to the emergency room for stronger pain relief. However, on numerous occasions when I've gone to get strong medication, I have experienced the unpleasant feeling of being treated like a drug-seeker. 

During my last stint in hospital, all I could think about is how this is never going to get better. There's no current cure for endo and there's not likely going to be one in my lifetime, so I guess I will be living with this pain forever. 

It's hard to come to terms with the fact that I'm always going to wake up in pain and it is never going to get better. It's also extremely tough to know that I am never going to be a normal 20-year-old.

My friends who are the same age as me are moving on with their lives. They're halfway through their university degrees, travelling around the world, or training for the Olympics. Unfortunately, I am never going to be able to do any of these things as my disease is holding me back. 

I just want to be a normal 20-year-old.