(If you have happened to stumble upon this page by mistake, please don't just pass on by. Could you just take a moment to sit and read this - as by doing so, you're not only helping to raise the awareness of endometriosis but you might also be helping someone that you know who has this disease. Thank you for your time. Antonia B)
My name is Antonia and I have endometriosis. I was diagnosed with the disease 20 years ago at the grand old age of 24.
If I had known then, what I know now, I don't think that I would have believed it. Having always had problem periods I still don't think that there was anything anyone could have said or done in order to prepare me for the onslaught of this glorious disease known as endometriosis.
To say that these past 20 years have been a struggle is an understatement. Some years have been worse than others. I have forgotten what life was like before I was diagnosed and trying to imagine life without this pain is impossible. There have been times where I've been lulled into a false sense of security; thinking that I've won that particular round, before reality hits me in the face once more. And when reality hits, it comes hard and fast - reminding me of who's in charge...and it certainly isn't me.
20 years ago we didn't have the internet and there wasn't the same amount of information available as there is today. I felt terribly alone as well as afraid. I didn't know what was happening to my body, let alone my life and because I didn't know anyone else with the disease, I relied heavily on friends who were as much in the dark as I was. My one bright star throughout this time was the small charity called Endometriosis UK (aka The National Endometriosis Society). Had it not been for them & their constant support, I'd have been very lost indeed.
Things changed overnight when I discovered the Internet in 1997. My world was my oyster & information came flooding in from all corners of the world. I "met" women online who knew what I was talking about. I could tell someone that I was in pain & instead of being told to get a grip, I was being offered support and encouragement. I could share my tales of woe and laugh about it, instead of sobbing into a pillow on my own. Suddenly life was good and although I may have still been afraid, I knew that I was no longer on my own.
Soon I found I was able to answer questions of my own & offer support and encouragement to others. Friendships sprouted up from a hesitant beginning and I was at last able to see a light at the end of the tunnel.
Throughout the years since my diagnosis, I have been keeping pain diaries. They're fairly irregular & vary from month to month - but I started writing it all down when my gynaecologist kept telling me how well I looked. I may have looked well on the outside but inside I was hurting & in a lot of pain. I told some of my friends about these diaries & they said that I should share them with everyone else. I ummed and ahhed but in the end decided not to. They were too personal & too graphic and I was still new to the whole Internet milarky.
But I did want to share my story and so I sat down and started to write; which is how this website came into its own. I always wanted it to be different from the other endometriosis websites and hope that I have continued to keep it so.
This was never meant to be a blog - it's just somewhere where I can come to share my scribbles; my thoughts; my feelings. And as much as I have explained the disease, I have also shared some very personal moments along the way.
If I can help just one woman with what I have written, then I know that I have done something worthwhile.
I still worry about endometriosis being brushed under the carpet, when there are so many of us who have to live with it on a day to day basis. This disease affects 10% of women in the UK and it is estimated that there are 176 million women and teenagers worldwide who have all been diagnosed. Yet ask anybody in the street if they have heard of it and they will probably say no. It seems that people aren't interested in endometriosis because it isn't life threatening. When push comes to shove it's all about "women's bits", a subject which people rarely like to discuss. It's simply a case of out of sight, out of mind.
But for those of us who have to live with it every single day, it isn't as simple as that. It isn't just something that we can ignore and pretend that it isn't there. If only life were so simple!
Therefore, I really hope that by reading these pages, you will see just how much we have to endure on a day to day basis and see that endometriosis isn't just about having painful periods. It is so much more.
Before I sign off, I would like to thank everyone I've met on-line since I signed on in 1997. If it weren't for my fellow sufferers, there wouldn't be a page here. Without your support and encouragement, I'd have given up years ago. So thank you all, so very much. I would be lost without my "endo sisters", truly I would.
Please note that I have not had any medical training whatsoever. Everything that I have written here, is either from books that I have read, or is taken from personal experience. If you think that you might have endometriosis, then please visit your local GP, before you jump to any conclusions from what you're about to read. Thank you.
Is Endometriosis a real disease recognised by doctors, or is it one of these new made up trendy diseases, like yuppie flu!?
What did I ever do so wrong to deserve this?
It's not like you're suffering from a terminal illness or anything. Think about the poor people who are