Me myself and endo

me myself and endo

Your expecting…..your expecting a life time of agonising chronic pain, a life time of a debilitating disease, a life time of missing big events and parties. You have ENDOMETRIOSIS.

Truth is endo is shit, it’s like that dodgy tattoo you got at seventeen, you try to hide it or forget it but it’s still there tarnishing your body in the background. I was diagnosed with endo aged 24 and I have never let it define me I have been rebellious to this chronic disease.

Endo isn’t something everybody understands, in fact you will sometimes feel so alone with your endo you will feel like the only English-speaking person in a room full of Mexicans. Everybody deals with endo differently, some take on this ‘endo sister’ badge of honour and wear their disability with pride, telling everyone they come into contact with they have endo. Me? I have tried to pretend as best as I can that it doesn’t affect my life, you see I’m stubborn, insanely so. If you tell me I can’t do something I will die trying, I hate admitting defeat. So been told I have endo and it would affect my life, I would need IVF, I would eventually need a hysterectomy and all the other bullshit that comes with endo didn’t go down well with me. Instead of accepting it I denied it and as much as I could pretend it didn’t exist.

I had surgery aged twenty-four and paid privately to go to a specialist clinic and they removed all trace of endo after a long five-hour surgery. I was told at the aftercare meeting it would grow back, that this wasn’t a cure just merely a reprieve from the pain for a time but I didn’t listen to that part. I finally felt healthy again, I wasn’t in pain, I wasn’t bed bound through exhaustion, I could start to live my life again.

I was given hormone therapy to stop my periods and try to prevent as much as possible it growing back. But I don’t do well on hormones I turn into this multi faceted character that will literally slap you in the face one minute then sob uncontrollably at Eastenders the next. So I came off the hormones as they were making me a different person and I have coped the past six years medication free just managing my pain with super strength pain killers when I need them.

But endo is a feisty little bastard, like a villain in a horror movie it just won’t fuck off, and it has started to once again affect my everyday life. I miss big events and parties been bed bound in agony, I deny invitations knowing that the pain will be too much to handle, I have let endo imprison me. It has now become so painful that I no longer control it, I can no longer deny it, it now controls me. It’s not just the pain that destroys your life for me endo means periods so heavy that I’m forced to wear what can only be described as a mattress for a sanitary towel and even that sometimes cannot stop the flooding, which is one of thee most embarrassing things to happen to lady, I talk from horrific experience. So I try as much as possible to stay pretty close to home or completely housebound when I am on my period, in this prison that endo has sentenced me to.

“I’m sorry I’m going to have to cancel, I can’t come today my endo is really bad”, this has become a regular response to friends and family every time I let them down due to my endo. And not many people get it, not many people understand, the worst thing about endo is its invisible. On the outside I look perfectly healthy I don’t have any visible evidence of the disease attacking my body and this is the problem with endo. Because people cannot see it they cannot understand it or relate to it, I have been accused so many times of being ‘lazy’ or been a ‘drama queen’. I have been told the pain is ‘normal’ or it can’t be ‘that bad’. But truth is everyday is a private battle with my own body.

So where is my relationship with endo going, are we on the path to permanent divorce, there is no cure for endo but women with advanced endo like myself  have usually been told that eventually the surgeries will no longer work and a hysterectomy will be needed, I was told by my private surgeon that he believed I would need further treatment around the age of thirty and actually told me to have children immediately or there would be a chance of not having children at all.  He was throwing about the dreaded hysterectomy word which I totally would not listen to, but now lying here yet again bed bound and dosed up on pain medication I can see that the time for facing this possible outcome is long over due.

So I have accepted I have this endo shaped elephant in the room and have booked an appointment to get the ball rolling with my next treatment. I’m hopeful that another surgery will patch me up for another little while and I can hold out until my forties for the big decision. But I know it’s time that either way endo stops ruling my life.

 

 

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