Body

Invisible illness: Endometriosis

Lilly is a busy and bubbly personal trainer, but she also suffers from chronic endometriosis - a condition that leaves her in intense pain.

Lilly Down (23) works as a personal trainer and is studying social work. She has chronic endometriosis, a condition that occurs when tissue that normally grows inside the uterus grows in other parts of the body. It can form nodules and cysts and cause intense abdominal pain, abnormal bleeding, bowel issues and fertility problems.

Endometriosis: What it is, symptoms and treatment options

I’ve had endometriosis since I was about 15, but it was only officially diagnosed via laparoscopic (keyhole)surgery when I was 19. It’s no big surprise because my nana, mum and sister have all suffered with it. My poor sister has had an awful time with endometriosis as well.

It’s kind of a weird situation. On the outside, I’ve always been an everyday 20-something. I work, I study social work at Christchurch Polytechnic, I sleep eight hours a night, I have a great partner, we go out with our friends and I have a loving family. But most of the day I am in chronic abdominal pain.

For a long time I was unable to sit down for more than 45 minutes and it really hurts to turn corners when I’m driving. It’s like the pain is this constant soundtrack running in the background, but on the outside I’m this bubbly, chatty girl. It’s a strange way to live.

Sometimes the pain gets too much. I have chronic attacks every so often and end up doubled over in agony. These attacks are not easy to hide but they don’t happen every day, so most of the time people don’t know. They usually last about an hour and then go.

I have lost count of the number of surgeries I’ve had to remove the endo – somewhere between 10 and 15. It was pretty depressing having all these surgeries only to still be in pain. However, the last time I had surgery the doctors couldn’t find any endo, which was amazing.

I also had a Mirena intrauterine system replaced in my body as the first one wasn’t successful and it’s now working much better. I still live with relative pain day to day but overall things are much better than they have been.

I’ve always tried to remain as upbeat as I can. Working as a personal trainer for Leap2it certainly helps because we specialise in helping unwell people be as fit as they can be.

It gives me hope to see people like me learning to manage their pain better. It means my work environment is incredibly supportive but it’s still quite tiring trying to look well all the time. When it’s really bad, it can be hard not to slip down the depression and anxiety road.

Sometimes I cope okay and other times anxiety can be a big factor in my everyday life. I do still get out and socialise but often I’m thinking, ‘God I hope I don’t have a pain attack in front of these people’ or ‘What will I do if we have to sit down for a long time’ or ‘I hope the route to this place doesn’t have too many turns or bumps!’

I’m very grateful to Endometriosis New Zealand for raising awareness of this condition so I don’t have to deal with people thinking I’m making it up, just because they can’t see it. It used to be hard to talk about my condition because it involves a lot of female organs, but now people understand it and I can be really open about what’s going on.

I’m not sure if doing as much as I do is the best strategy, especially when fatigue is one of my symptoms, but part of me is a bit scared of stopping and confronting the pain and its toll on my life. Keeping busy seems to be the only way forward at the moment.

Everyone has a different way of dealing with conditions like this. I used to exercise heavily and be really fit but I learned that wasn’t helping me. Cate, the lady who owns Leap2it and who has rheumatoid arthritis, taught me that swimming or a walk in the park is much better for my condition. It’s about finding the right level of exercise to stay healthy but not exacerbate the problem.

All things considered, I manage to lead a relatively happy life – but I do have fears for the future. I worry the endometriosis will get worse as I age. I wonder whether I’ll be able to have kids – endometriosis has a huge impact on fertility – and if I were to have a daughter, would I pass this terrible condition on to her? I guess I’ll just cross those bridges if and when I come to them.

I just hope that by then we’ll have a better understanding of endometriosis and more effective treatments for this awful condition.

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