A Woman's Insight into Living with Endometriosis

(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 19 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 19 years have been a struggle is an understatement.  Some years have been worse than others - this I must admit  - but I can't ever remember a time where I had no pain at all.  Sometimes I would be lulled into a false sense of security, believing that I had won that particular round, only to find the endometriosis rearing its ugly head once more and the battle would recommence.  

In 1994 we didn't have the internet to play around with.  The only information available about endometriosis was either found in books, magazines or via The National Endometriosis Society (Endometriosis UK).  I didn't know anybody with endometriosis and I was terribly alone.  One good thing that came from joining this charity, was their helpline.  It was a life-line on several occasions and even though you had to pay for the call, it was worth it on a really bad day.  

Then in 1997 I discovered the Internet & my life changed dramatically.  I met other women with endometriosis online and for the first time in three years I no longer felt quite so alone.  I was able to ask for support and I got it unconditionally.  I would ask questions and replies would come flooding in.  And as I learned more about the disease I was able to answer questions as well. I found that I was now offering support as much as asking for it and I started to feel much more positive about myself and my disease.  

As I shared my story with some of my new friends I told them about my pain diaries.  They said that I should put them up on the Internet for other people to read - but a part of me wanted to hold them back.  I felt that they were too personal and I wasn't quite ready to share those feelings.  Instead I started to write about other things that were bothering me and decided that these were things that I could share.  

And that 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.  I know that there are trillions of websites about endometriosis but they are still quite clinical and impersonal.  

This was never meant to be a blog either - 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 and 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.