I’m sure that a vast amount of girls here will be able to relate with my story. It starts how I’d imagine many of our stories to start, when I started my periods in August 1999, I was 11 years old.

My mum had told me very little about periods so I muddled on through but the pain began with the first bleed that lasted well over a week, every time I came on my period I’d get diarrhoea for the first few days but no one ever seemed bothered so I just got it with. Other months, I’d also be sick and have to take three or more days off school a month, painkillers wouldn’t dent it, nothing would help, a hot water bottle would, to a point, but the minute it started to go cold I’d need it reheated and boiling again. I was so heavy as well always bleeding through sanitary items and my clothes, I’d started not wanting to leave the house when I was on, I was so scared!

When I was about 13 years old, my mum and dad rang the NHS Direct helpline and told them how much pain I was in and that I’d be sick and get diarrhoea and the reply they got was that it was "normal" and that I’d "grow out of it". As you can guess, I never grew out of it.

So I started doing what a lot of us do, I imagine, I just got on with it, kept going on with my day and just resigning myself to the pain.

When I was 18 years old and in university, I was revising for an exam I had the next day but I was overcome by the worst migraine in the world. I was laying down in the dark, any noise hurt my ears, I was on my period as well and I was sick, a lot. The next day I went to do this exam on Global Politics and needed the loo half way though. One of the exam staff watching us, had to come with me and she asked me if I was alright. I couldn’t stand up straight without being in pain, I was walking hunched over and told her I felt dreadful, she told me to do the best I could or I could re-sit it later.

This was the turning point for me, the point where you realise something, quite clearly, is not right and you can’t go on like this. With my mum’s support I went on the contraceptive pill, first Microgynon, which sent me barmy, and then Yasmin. After having a series of migraines, I was taken off them and tried the mini-pill, where, on all the ones they tried me on, I bled constantly. I told them I wanted to deal without pills and see how I got on, aged about 22 now, I met my Mr and I’d been doing some research about gynaecological conditions and came across endometriosis and it fit the nightmare I’d been living.

After coming off all the pills and letting the hormones out of my body, my periods hadn’t returned to normal. After six months of no periods, despite no pills, my GP decided to do an ultrasound of my abdomen which discovered that my ovaries had cysts on. The GP said we should "keep an eye on them". I asked her, "could it be endometriosis?" in addition, she replied to me, "no, you’re too young". I was referred to gynaecology who told me it was a thyroid problem and told me to come back and see them if I had any other problems. I once again had no answers.

I started getting ovulation pain, pain during sex and became depressed, but in June 2011, my family and me moved from Northumberland, North East England to Birmingham, West Midlands. I saw my GP who straight away referred me too gynaecology who did an ultrasound, monitored the cysts and then when I started getting abdominal cramps every day they decided the next course of action was a laparoscopy which I had in April 2012. As I was coming round off the anaesthetic I croaked at the nurse, "did they find any endometriosis?", "yes", she replied. I finally had an answer.

In a way, my story isn’t over, I’m still having problems to this day. I still suffer with depression. I used to self-harm but I’m getting there. I am determined that this chronic illness will not beat me. 

I still have a lot of pain and I’m hoping all this will get sorted, mainly because hope and optimism are the few things this disease can’t take.

Thank you for sharing your story Debbie.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.