Community: Real Life

Endometriosis and infertility

Lucy is 17 and has endometriosis. Here she talks about getting the diagnosis, coping with the side effects, and coming to terms with being told she can't conceive naturally.

The diagnosis

I've had bad period pains for as long as I can remember, but when I was 14 it got so bad that it felt like someone was grabbing my insides with their nails. The doctors discovered a cyst on my left ovary, so I ended up having major surgery - a scary thing to go through at 14. During surgery it got worse. The cyst had caused my Fallopian tube to twist round so they removed the left ovary and tube, as well. The cyst was sent off to be analysed, which is how I was diagnosed with endometriosis - I hadn't even heard of it before then.

When I was lying exhausted in a hospital bed after the operation the doctors said: "We've found complications related to your womb during surgery. Now that you only have one ovary you will need IVF to have babies." I was just thinking: "Woo! I'm 14."  To be honest, I didn't really think about it at the time because I had so much other stuff going on. It's not until recently that the timescale of it has hit me; even if they treat the endometriosis successfully I'll still have this to worry about in the future, so it feels a bit never ending.

If I want children I can go straight to the specialists and have IVF. In one way that's brilliant; I can cut out all the years of trying that other couples go through before they realise they are infertile. But on the other hand, why couldn't they have said that it's not a possibility and then I wouldn't have to go through all this? It's just so much to think about. What if I don't try it and then I feel guilty? I've already had so many hormonal injections and it's horrendous; I don't really want to put my body through all that again unless I'm sure.

Discovering you are infertile at 14 starts a whole train of thought going in your head. I'd only ever had those childhood fantasies about growing up and having babies, but apart from that it was never serious. Then you're told that it's not a possibility and you start thinking about it - and it's years into the future. It's really bugging me now; most teenagers are obsessed about not getting pregnant and I'm burdened with all this.

Friends and relationships

I don't have a boyfriend at the moment but generally most of my friends know about the infertility issue, so I hope that if I did meet someone I wouldn't need to make a big deal out of it. I often look at the guys my age and think: "No, I don't think so!" I couldn't really cope with them - I don't think they'd understand or be able to cope with what I'm going through.

It's the same with my friends; I'm not at the same stage as them. I've missed so much school that friends start to forget about me because I'm not there. They hardly ever ring me and if they do they just go on about parties they've been to that they didn't invite me to. While they're going out to parties I'm stuck in hospital on morphine - I wish I could have enjoyed doing things like going out and drinking. I've found, like with everything I've been through, that I've grown up much faster than my friends - or maybe it's that I've just missed out a stage altogether?

"I was lying exhausted in a hospital bed after the operation and the doctors told me I wouldn't be able to have babies. I was just thinking: "Woo! I'm 14.""

I'm anxious about having sex as well. Endometriosis can make sex painful, so I worry that it will be really painful and I'll just lie there on my back doing nothing. It could turn out to be a disaster. And then, the more you worry about it the worse it can get.

Medication and side effects

Throughout my illness I've been on so many different drugs. First I was given a hormonal drug called Prostap, which basically puts your body through a fake menopause. It's weird - you can't really talk to your friends and say: "I'm going through the menopause." They're like: "I haven't even started my periods yet." Luckily it eased the pain a lot and it was nice to get my life back a bit. It definitely helped me get through my GCSEs; I dropped one subject but I still got nine A-C grades so I was really pleased.

Next I was put on the pill because my periods started getting worse again, to the lowest point when I was in the bath for three days, and I've also been given various painkillers. Finally, I was referred to an endometriosis specialist, who I hope will recommend a laparoscopy. I don't think they really know what to do with a teenager with endometriosis because it isn't usually spotted this young; they usually put it down to period pains or IBS.

I've felt a lot of anger about why this has happened to me, and the medication also throws my emotions are all over the place. I get really emotional because of the pill; people say the most light-hearted things and it makes me feel terrible. I get myself so worked up sometimes. At one point I'd just sit sobbing and screaming, just because I couldn't cope with getting up in the morning and having to go through another day. It was really scary and must have been worse for my mum and sister. I ended up curled up in a ball on the landing refusing to move - my mum nearly took me to hospital.

Other days I feel completely lethargic and I really can't do anything apart from sit around on the sofa. Sometimes I just think: "What the hell is the point of me just sitting here?" That's partly why I made my website, to feel like I was doing something. Most information on endometriosis is either really patronising or it completely goes over your head, so I wanted to make a site that other teenagers would identify with, and with the help of a friend I have managed it.

I haven't had much help from the doctors - I've found the internet to be much more useful. There are a couple of specialist sites with support rooms and I've also started going to a group in person. I've just met another 17 year-old girl with endometriosis and I was so pleased to meet someone my age who understands what it's like. For now I'm just concentrating on getting better. I feel quite positive about having a laparoscopy and hopefully being able to get back to a normal life.

Interviewed by Hannah Jolliffe

Updated: 16/04/2010

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