[This is the first instalment in my blog series about my experiences with Endometriosis. If you have any questions about my experience with Endo or you have the illness and would like to talk to somebody who understands, please drop me a line. ]
Endometriosis. A disorder in which tissue that normally lines the uterus grows outside the uterus. Seems straightforward. It’s not. Not by a long shot. This is a disease that even doctors know very little about. I met a fourth year med school student during one of my hospital stays who seemed to know less about it than I did.
It is a widely misunderstood disease that can affect your life in ways you would have never imagined. A disease that can lie dormant and undetected for years, and will rear its ugly head and leave you feeling cheated by your own body. Some women don’t even realise they have it and some feel it in some way every day. I am the latter. It’s inconsistency between different women is what makes the nature of the illness so hard to understand.
Because of the limited knowledge on the subject, we are forced to remain ignorant to it until we are affected by it personally and painfully or if we have to watch a friend or family member suffer from it.
In school we learn how to interpret Shakespeare and calculate the square root and find angles in shapes that barely exist in real life but we are left to work out the real life things on our own. We are so ignorant to it that girls are wired to think that if their periods are unbearably painful then that’s just how it is. We as a society have been encouraged not to talk about it and this attitude has set medical research on the subject back years. Had it been acknowledged as a serious problem a long time ago then we would probably know more than we do now. We would be closer to finding a cure or we would have more effective prevention methods. It needs to be spoken about, people need to be educated and women need to be taken seriously.
I wanted to try and use my unfortunate experiences and my knowledge and my mistakes on the subject to help others. Especially since there is so little help or information available. I’ve found the most useful information has come from others who also suffer from it, not from medical professionals.
If I could help those affected and help their loved ones who have to watch them go through it, it would at least give meaning to my experiences.
I have been told time and time again “it could be worse”, “you could have cancer”, “you could be dying”. Which of course is true; it could be worse, but the fact that it could be worse shouldn’t take away from the fact that endometriosis has changed my life. Having chronic pain has made me depressed, it has made my anxiety worse. It has forced me into the hospital more times than I can even count. It’s put me in an ambulance 4 times within two months, having never even seen the inside of an ambulance before that. It is likely to affect my chances of having children. It could have easily been the end (if not close to it) of my relationship had my boyfriend not been so caring, patient and kind hearted. I’ve had to take countless days off work and I am sure that if I had not had such an understanding and patient workplace, I would have been fired for sure, and there is no way of claiming any type of illness or disability through welfare and Endometriosis is not covered by any type of insurance.
So while I know how lucky I am that this is not cancer or something horrible or life threatening like that, it is definitely a condition that has severely impacted my quality of life. It has been a part of my life for a solid chunk of my early twenties so I definitely learned a few things and made some mistakes along the way. The purpose of this is to share my experiences and hopefully help others. Make sure that other women know that they’re not alone, especially because I know how alone and isolated this awful disorder can make you feel.
This is my endoMEtriosis.