Image courtesy of http://pokec0re.tumblr.com/post/33462008545
I think the 'weirdest' thing about endometriosis is that no one knows about it. I think it's understandable for people to have questions over something even when it's as common as cancer, but to have not even heard about it, for it not be featured in magazine or news articles, for it not to have any place on TV or be part of lessons when growing up is very strange.

Endometriosis is now such a common condition that I think teenage girls should be told about this and other gynaecological conditions (such as PCOS for instance) when they are learning about menstruation. Girls at that young stage in their lives need to know what is right and wrong, they need to know that being doubled up in pain, laying on the bathroom floor in the foetal position and bleeding so heavily it's like a tap has been left on, is not normal.

I went to a Roman Catholic school so sex education and any discussions about what was happening with your body was extremely limited, to the point where we didn't have any lessons in it. I don't know if that is still the case at RC schools nowadays (I left school in 2000) but I do know from speaking to friends that other schools, non-religious schools, did have lessons in what to expect and 'normal' sex-ed lessons. This isn't a discussion for sex education right now, so I won't get in to that (since everyone has their own views on whether it is right or wrong for teenagers to learn this from their teachers and not under the guidance of their own parents), however, I do feel that it's vital that teenagers learn some basic lessons in what is right or wrong in what to expect from puberty - both boys and girls.

Yes, everyone is different, and at that young age you may not yet be dealing with any abnormalities, but I've spoken to girls who were in my year at school and have discovered, only now, that they were going through the exact same experiences as me, but we all just thought it was normal and carried on without speaking out and knowing any different.

Growing up, I thought it was normal to have ridiculously heavy and painful periods because my mother had the same problems... Whereas now it seems that she could have indeed had endometriosis also. That we will never know now, although recent research has pointed out that endometriosis does seem to be hereditary. But, had someone just uttered the simple sentence 'it's not normal' to me, then I would have investigated then. I started my periods when I was 12 years old and was diagnosed when I was 21 (although I only questioned my problems when sex became painful). But then, is everyone clear enough on knowing that sex shouldn't be painful? I knew it wasn't normal because I'd been sexually active for a few years and noticed a change when I was 20, but what if it's painful from the very first time. What if girls/women are to embarrassed to ask about what is right or wrong? What happens if they question someone else and they believe it to be normal also?

I think if you ask any woman who is dealing with endometriosis what their wish for the future is, it would be for a cure, so we can stop living a life of constant pain and upset. But second on the list, and probably even more important than an actual cure, is awareness.

If only one person had told me these things weren't normal, if only my parents had heard about this disease, if only the teenage magazines I read discussed menstruation in more detail, then I might have been able to tackle this problem from a younger age and hit it head on. Now, it's too late for that. The damage to my body is done.

That's why my ultimate goal now is make as many people aware of this condition, this disease, as possible. And if me and Danny are ever blessed enough to be able to have our own children, or whether we turn to adoption, either way, I will certainly make sure that my daughter (or son) knows what to expect. I can't imagine anything worse, after everything I've been through with this, than to think they are too embarrassed to talk about their issues or in the same way to think that everything is normal.

My final, parting words for today are simply to advise that if you are worried about anything with your health in general then to talk to someone about it. And please don't think that heavy painful periods are normal, or that sex should be painful. If you have younger sisters, daughters, nieces, grand daughters, please make sure they know. If we can start catching endometriosis at this optimal time then maybe, just maybe, we could increase the chances of beating it, or at the very least, teach one more person in the world that endometriosis is real, it does exist and it's not just in our heads.

S.