Can we talk about the aftermath?

Can we talk about the aftermath?

Hi all of you lovely sisters, I hope you're all coping and finding the love and support you need every day to keep going, and hopefully finding windows of joy in there!

I often struggle with the image of Endo, and the images that are used to portray Endo (I know I've ranted about it somewhere, probably on the Ireland Endo charity facebook page... lol!), and none of the images I ever see used relate enough of the hidden visceral mess that Endo and it's treatment leaves behind in most of us: scars. HUGE, F*CK OFF SCARS. Scars that would scare your granny, scars.

People who don't know about Endo see pictures of women, usually in white, with a cute crinkle of the forehead holding their belly, or laying prettily on a bed with a hot water bottle on their belly. And there have been images of barbed wire wrapped around a lady's middle, and lots of creative visual expressions of pain and visceral anguish. But no one cares about these images. They don't relate the invisible problem.

I was laying awake this morning with the video of my latest surgery running through my head. I was thinking about it because on one of the Endo Facebook pages somewhere in the world, someone posted video of THEIR surgery and all I could see was lovely, distinguishable, pink organs and space around them so you could tell which organ was which. And then my video, which was filled wall to wall with whitish ectoplasm, a stringy, muscus-y, amorphous mess punctuated by bleeding lesions. No pink, nothing looked happy. My uterus (before it disappeared from view out a hole which happened to be the top of my vagina), lumpy and greyish, looked like it had just given up. Nothing looked right.

I have nightmares about that. I wish I could go back in time and stop the general gyne who didn't have the confidence to twice complete the laparoscopies and dove straight in via laparotomies so his hands wouldn't slip and nick my bowels. I wish I could tell myself then to find a better doctor. I am paying now for the damage he did to me, and I always will.

Like cigarette packets with blackened lungs on them, or other campaigns that give people a window on the invisible so that they're at least able to care A LITTLE, wouldn't that be better? I'd rather see an Endo awareness campaign that put together a photo looking down into an open abdomen with nice, clean organs juxtaposed with a photo looking down into an abdomen of a person who was horribly scarred on the inside. I know it's graphic, and I know it's possibly in bad taste, but we will NEVER make this anything more than a pretty, taboo women's issue about periods unless people get to see just how f*cked up this condition makes you inside where no one can see. (Ive attached an illustration to this post, just to outline what I mean)

We need this to explain the initial battle and its aftermath, and the lifelong curse of the catch-22 where surgery is the only real treatment and also the most damaging thing over time, and with that illustration of that catch-22 in no uncertain terms, we can demand research into better diagnostic tools, research into better forms of treatment, and better care and management and pure RECOGNITION of the problem in the first place.

I am so sick of having to read posts of so many women crying out for help to people who are not qualified to help! This is ridiculous! I love you all and you all deserve so much better than this.

Sorry, I'm done ranting. I don't quite know what to do with this frustration of mine.

3 Replies

  • Very well said, and I totally agree that yes it may be graphic but maybe that's what it takes to make people see the real truth behind this disease.

  • I particularly like the description ' whitish ectoplasm, a stringy, muscus-y, amorphous mess punctuated by bleeding lesions'

    That is seriously the stuff most horror writers/filmmakers dream of but ts a sad reality


  • Well said. I have had people comment that 'some women just have low pain thresholds'. If people could visualise it, they may be less inclined to minimise it.

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