Tuesday, 2 October 2012


Five years ago I was diagnosed with endometriosis, a condition affecting approximately 2 million women in the UK and yet so few people understand what it is. I was diagnosed aged 21 after going backwards and forwards to the doctors since the age of 16 with the most horrendous stomach cramps, these were passed off as typical period pains and I left the doctors with medication and the idea that I was somehow lying about the pain, it wasn't until my final year of university in a health class that I realised something was wrong. We had a visiting lecturer who spoke to us about the importance of knowing our own bodies and knowing what was right and what was wrong. We were given a check list of things that we should be aware of and as I went through it I was shocked to see I could tick almost every one off, I went back to the doctor and was fobbed off yet again 'no periods because of my pill, pain is normal etc...'
I became incredibly depressed, I was signed off work and put on medication to help lift me out of the dark place I had found myself. I started to lose friends, I cancelled plans because of the pain, I became reclusive, tearful and resentful of the girls around me who were able to live normal, pain-free lives. In desperation I made one last doctors appointment, determined to leave with answers, I was lucky - I saw a female doctor who for 40 minutes listened to me as I poured my heart out and I left with an emergency referral to the hospital to find out what was wrong. Two weeks later I had an initial diagnosis, the ultrasound scan showed signs of polycystic ovarian syndrome which explained some of the symptoms but not all of them. Lucky for me the doctor was convinced there was something more and I was booked in for a Laparoscopy at the local hospital, finally I felt I was on the road to an answer, a diagnosis and treatment to help me live pain free. As I came round I was told they had found endometriosis in my womb, on my fallopian tubes and on my bowel, I had an answer and yet no treatment. Endometriosis is a horrible condition, one which cannot be treated the same way in every woman. I have tablets I can take when the pain gets too bad but these literally knock me out, but other than that I am left on my own.
Having a diagnosis doesn't make life easier. I live with the constant knowledge that having a child of my own will be difficult, this hangs over me like a cloud and affects my life in surprising ways. I can find out about someone being pregnant and cry for days, I look at young families and find myself aching to have that myself, one day in the not so distant future Stuart and I will have to think about beginning fertility tests, this idea scares me more than anything in the world. The idea that one day someone may tell me to consider other options is a heartbreaking one, one that I try to not think about and yet it creeps into my subconscious with alarming regularity.  
I'm writing this post not to preach or because I feel sorry for myself but because I want people to stop and think, just because you can't see something doesn't mean it isn't there. There are countless people out there who are suffering day in day out, if we have to cancel plans at the last minute take a moment to understand why before being annoyed and judging us. Take a minute to imagine spending a day in indescribable pain, unable to get out of bed and having so little energy even the most menial task is out of reach.

For now I attempt to look to the future positively, I have no control over what is going to happen and I am lucky that I have a husband and family who surround me with positivity.

For more information on Endometriosis visit http://www.endometriosis-uk.org/ and for Polycystic Ovarian Syndrome visit http://www.verity-pcos.org.uk/

1 comment:

  1. Oh Gemma! I read this and felt for you, I really do. It so heartbreaking when people dont get the support they need from doctors, and get fobbed off. I'm glad that now you have an answer and some way of making things more bearable. Try not to worry too much about conceiving when you do try to start, you just dont know till you try and even then there are so many ways to help people to have children. I also have PCOS and have been told that if I want to have children I need to get on with it. In fact I was told after all the scans and invasive things being stuck you know where "you're almost thirty you know so you should have a serious think" which was great and REALLY made me feel confident about it, but please PLEASE dont worry too much or it may make it even harder. xxx