It’s hard to tell people I am about to have a hysterectomy not just because it makes many people squirm and think it’s inappropriate to talk ‘ladies business’ but because for others their first reaction is ‘oh so that’ll cure your endo won’t it?’. Myth number 1, no it won’t. It won’t cure endometriosis, what it will do is reduce the pain I have from adenemyosis, endo’s horrible cousin. What it will do is give my surgeons a chance to excise any endometriosis, divide adhesions and free up any pesky organs that have stuck together again. Not that there’s as much left after already having lost both ovaries, my gall bladder and appendix to the many surgeries I’ve already had.
Which leads to myth number 2, that after you’ve had one surgery you will be fine and it’s all gone. Geez I WISH! If only I knew then what I know now… By the time I found a great endo specialist I had already had over a dozen surgeries for endo, where they lasered off endo many times, drained cysts, wrapped my ovaries in special gauze like material to stop adhesions and filled my pelvic cavity with some bright blue liquid in an attempt to do the same. Now of course I know excision surgery is the gold star for treating endo, but back then I didn’t and so I went on the surgery round about, only getting off when I had the right surgery with the right team including a colorectal surgeon who freed my bowel from being stuck to the pelvic wall and rectum and managed to avoid a resection.
After that last big operation I was lucky enough to have one successful ivf outcome, leading me to myth number 3, that getting pregnant will cure your endo or stop your symptoms. Let me tell you how wrong that is, pregnancy was painful, it was hard and it didn’t stop the endo train. For me personally I had some relief in symptoms after my son was born for a time, then I didn’t, then my arch nemesis came back and brought it’s sidekick adeno and the two having been kicking my butt ever since.
So now for me after exhausting ivf attempts and knowing I can’t have any more children it’s time to don the yellow superhero cape and take down my enemy. With my trusty team of fellow superheros (my doctors) I am going to face this villain head on and kick it to the curb so I can start the next chapter in my story with better health and less pain.
Finally one of those other niggling little myths, that the more surgery you have the easier it gets. Let me just say that’s not the case. Am I scared? Of course, no matter how many surgeries I have had (and between endo and associated problems it’s over 30) it doesn’t get easier, it doesn’t get less scary and it gets harder to bounce back from. But I will focus on the positive, I will lean on my family and friends to help me when I need it and will think about my endo sisters and how hard we all work to not let this disease define us. Endometriosis won’t win this fight, sure it will slow me down for the next few weeks but then the plan is to be unstoppable…but I’ll let you know how that goes!