Spending the last three days in bed (again), letting down my colleagues, my boyfriend and myself, I am really starting to wonder what my future may hold?
I suffer from Endometriosis. For those of you who don't know what that means it is usually a very painful and debilitating illness that affects over 1.5 million women in the UK alone, caused by the endometrial lining in the uterus migrating and growing elsewhere in the body. Among it's many symptoms it can cause excruciating chronic pain (pelvic, back, stomach, migraines), heavy periods, infertility, weight gain/loss and depression.
Some women can have it and suffer no symptoms whatsoever, others are completely debilitated and cannot work, struggling to have any sort of normal life. Endo can spread to anywhere in the body, it is not unusual for ladies to have it on their lungs and other organs, as the tissue sheds with no where to go it causes internal bleeding, inflammation and often adhesion's.
I am quite lucky that I am in the middle spectrum. My daily pain at it's normal levels has become exactly that - normal. Although I can function with "normal pain" it makes day to day life very tiring, but when the pain goes up a level I just don't stand a chance. I am very fortunate to have a part time job with very understanding bosses and colleagues, my loving boyfriend who never seems to get angry with me and friends who understand when I have to cancel plans at the last minute.
However, the guilt of letting everyone around me down cripples me as much as the endo itself. I was always the reliable one and now, well there is nothing I can do about it and although I hate it, I have to resign myself. I am desperately waiting for further surgery (last time they had to separate my bowel from my left ovary, cut away adhesions and remove as much endo as possible) which gave me around two years of relief. Day to day I live on pain relief, hope, support, dreams and my hot water bottle. Hormone treatment does nothing for me apart from giving me severe migraines.
On average it can take a woman seven years to get an endometriosis diagnosis, whilst suffering this whole time and at some stages being told it is all in her head. Ladies lose their jobs, their relationships, friends and sometimes even their lives (when it all just gets too much). Even when you do get a diagnosis finding the right consultant can be extremely hard, I have begged and pleaded with so many male consultants, who let's face it, can't really truly understand (don't get me wrong, some don't pretend to and they tend to be more sympathetic, others are miracle workers). But there is no cure, only management.
There is presently a petition running to ask Parliament to debate for a faster diagnosis of Endometriosis, please sign and share and help those that really need some answers https://www.change.org/p/endometriosis-needs-faster-diagnosis-greater-education-amongst-the-medical-profession
The most I can look forward to? Well it won't be the children I always dreamed of (but that is a whole different blog post), a semi pain free life would do. The good days are great days because I appreciate them so much more, and although I am no Dylan Thomas when life puts me on my ass I can occasionally write a little. I may be down, but I am not out yet.
To all those who suffer with chronic illness, you are doing your best, keep on keeping on and know you are not alone.