Saturday, 26 March 2011

Endometriosis: The Power Of A Smile..

I love quotes. Quotes about love, quotes about friends, about family, happiness, times of sadness or celebration. Pretty much every subject. I have been collecting quotes for over four years now and have a book full of all my favourites. However, I recently came across one that really made me think.

"You only see what I choose to show.. There's so much behind this smile you just don't know.."  

It made me think how greatly this relates to us girls with endo and also applicable to many, many other things in life. It's amazing what a smile can hide. Such a little thing, yet it covers up a whole backlog of emotions. It can hide pain, lots and lots of pain. When our bodies feel like they're screaming out and the whole world can hear. It can't. For us inside it's like a constant scream, cry or sometimes when lack of energy hits, just a wim
per. But when people ask how I am, I've noticed my usual response is "Im ok thanks, getting there" or "Im fine". The word 'Fine' I once heard being described as 'Frustrated, Insecure, Neurotic, Emotional'. Yep, that pretty much sums up how I'm feeling. I want to tell people that some days I feel like I'm all over the place, some days I'm an emotional wreck, I'm fed up and I'm hurting. But most of the time I don't. I just say Im fine - with a smile. A smile also covers up your worries, your anxieties. On the outside your smile is painted on. On the inside you're stressed to the max, with a million and one questions, all running through your head at once. Worrying about the pain, the medications you need to take, your job because you've had so much time off sick, college work, relationships, the future.. The only person who can truly see through my painted smile is my mother, the amazing brilliant mother who I'd be lost without. There's no point in even trying to hide it from her because each time it'll result in "no you're not fine.." But what I've learned from that is sometimes it's ok not to be fine. Your not weak in admitting it. Your actually stronger than you think. Admitting that you need help or just someone to talk to. It works. On the other hand, the only person that can have me doubled up in laughter and always brings a smile to my face is my brilliant brother. One look from him with his big grin, one word and he'll have me smiling. Sometimes laughing so much I need to walk out of the room away from him, because i'll have tears of laughter rolling down my face, not sadness. Which is so badly needed on a down day. I'll be forever grateful.

One thing I have found on '@my_endo_diary' Twitter account is that it's amazing how honest you can be about how you're feeling, with no judgement from others, because at some point they have all felt the same. You can scream if you like, cry while typing messages, tears can fall onto your laptops, you tell the world how annoyed you're feeling. No smiles are neccesary. But when you laugh, you can laugh together, share experiences and get things off your chests. Which I have found does result in a smile in the end. Knowing that others understand exactly how you are feeling somehow makes you feel slightly less mad, and happy that you are not alone. 

You see the power of a smile works both ways. It can cover your emotions but can also bring happiness to others. One smile to others can change their day. Even if it's a stranger. If a person is having a really bad day, a stranger passes them in the street and smiles. It's contagious, you automatically smile back. One smile can totally change a person's outlook on that day, even their week. Especially with the amount of down days I know myself and others with endometriosis can get.. A little bit of warmth can go a long way, the power of a smile can do wonders...x

Friday, 25 March 2011

Doctor Who, Endometriosis What?

How many doctors have I seen and received totally different advice from? In the last year alone, at least six. Whether all that information was correct, I beg to differ. It seems that during my time coming to terms with having endometriosis I have done so much research on it I actually believe I know more on it than most of the doctors I have seen. Why haven’t the doctors done this type of research? I mean this is their jobs right? Yet I find most of my time repeating my symptoms over and over again, trying to explain myself and convince them its not 'normal'. When I first felt something wasn’t quite right, with reluctance I went to my doctors and explained my symptoms of pains in my stomach. Sometime short, sharp stabbing horrendous pains, others dull aches or a twisting feeling inside, tiredness, emotional.. She dismissed me. Told me to keep an eye on it and come back if it gets worse. Gee thanks, great help that doc! Being naive as i was at that time, that’s what I did. Four months later the pain was unbearable and my stomach was so swollen i looked five months pregnant, periods were all over the place and i had become an emotional wreck. This time i didn’t want to go to the doctors at all. Just to be fobbed off again? No thanks. What was the point? But I did after being forced to by my mother (it's her job I've been told).. Well, Doctor number 2 actually believed me..major relief! But then swabs done, internal examinations done (one of the most horrid things I’ve experienced!) blood tests. All clear. At that point I was more worried than the start. Back to square one. If it wasnt something simple then surely it had to be something bigger? But no one could tell me what. Doctor number 3 advised me I only had IBS. To change my diet, more fibre needed and I 'just had to put up with it'. Back and forth so many times after that I've lost count. I knew it wasn't just IBS. Then polycystic ovaries was mentioned. But not confirmed. Finally sent for a scan by doctor number 4. Yay, getting somewhere! Results = Clear.. Aaarghh! I started learning here that whatever it was I had, it wasn't going to be an easy ride and it certainly didn't play by the books. No sticking to rules, it was going to do what it wanted.

After countless visits the word endometriosis was mentioned. Endo what? I couldn’t even pronounce it let alone understand what this would mean. After my laparoscopy it was confirmed. I didn’t know quite how I felt at this point. Relieved. Relieved to know I wasn’t going mad, it wasn’t all in my head and now it had a name. Scared. Scared that it was a disease that has no cure. How was I going to cope? How would it change my life? I guess those are things I’m still working through. But now I have a diagnosis at least things would be easier with my doctors now right? Wrong! Hospital told me to take co-codamol for the pain. Doctor then tells me to stop because they are causing the cramps I’m having and should just take paracetamol when needed. When needed?! All the time mate! Tried to explain paracetamol doesn't touch the pain..doctors response "ah right, well.." and that was it! So I did what they said. Still had cramps. Next doctor told me that was wrong and to keep taking co-codamol because it will help with cramps. Round and round in circles. This week was yet another visit to the doctors to see yet another doctor. With advice from my lovely twitter friends, I went in all guns-a-blazing. Backed up with my symptom list, diary and of course the mother! Changed my medications again but this time to things I had researched myself. I really cant understand why the doctors keep providing such inconsistent, sometimes way off and wrong information. So many misdiagnosis by doctors when all the symptoms are staring them right in the face! Told over and over again but they are never linked! Surely with other illnesses, patients don’t have to research it all for themselves then take it to the doctors to explain it to them?! No wonder there is such a lack of awareness regarding endometriosis out there. If the doctors themselves do not fully understand it or how to treat the pain once it is diagnosed, what chance do we have? This is just my experience and I’m sure there are GP's out there that are very helpful with endometriosis cases, but unfortunately for me I’ve only ever met one.

So, its a start of a new journey for me, dealing with endometriosis. Living with it, coping. Or at least trying to. But as I go through this new chapter I am going to try and do everything I can to raise more awareness. I want people to learn that 'Endo What??!' is actually ENDOMETRIOSIS. Learn how to pronounce it (end-oh-meet-ree-o-sis!) and most importantly what it is. A horrible disease that one in ten women suffer from. The second biggest disease that affects women. And that it's not just bad periods. The symptoms we experience are not 'normal'. We shouldn't have to put up with it . All these Doctor Who's need to listen. Need to research. Need to believe. We are the ones who know our own bodies and if something isn't quite right, we know. Hopefully with more awareness raised, everyone will benefit from it. Whether we are sufferers, doctors or families of those who suffer. So, here it goes, wish me luck!