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Stage 4 Endometriosis

Posted on September 7, 2020September 11, 2020 by Amy

For those of you suffering from stage 4 endometriosis you will know how bad it can be. No, it’s not cancerous, it’s a benign disease, but stage 4 endometriosis can give you pain so excruciating that you can’t walk and it can eat away at your organs until it kills them. Stage 4 endometriosis is the worst stage, although there is rumoured to be a 5th stage – frozen pelvis which is when it engulfs every organ in your pelvis along with your peritoneal wall. This was pretty much my situation.

When I was diagnosed with stage 4 endometriosis by laparoscopy, they didn’t know what to do with me – in the surgeon’s words ‘it’s everywhere, and we couldn’t operate – it was too bad.’ So they stitched me back and sent me to another hospital! Where I was give another diagnostic laparoscopy and had stage 4 endometriosis confirmed AGAIN!

At this point, it was effecting EVERY aspect of my life – my career (I retired from teaching at 36), my relationship (not having sex is no fun!) and even my mobility (I couldn’t walk or get up and down the stairs). It got so bad that I couldn’t even eat – every time I swallowed even a tiny mouthful of chicken I felt like I was getting stabbed in the side. I lost so much weight and kept passing out on the toilet.

I had an 8 hour excision surgery which gave some relief, but no where near enough. Another 18 months later, I was in theatre again but this time having a full bowel resection. My surgeon told me that I was literally 2 weeks away from a full bowel obstruction. Miraculously, I didn’t need a Colostomy or ileostomy, although this is still a possibility for me in the future – and I am fully prepared to have it if it helps me to continue to loive life.

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