Just out of interest, how many of us are here due to complications arising from endometriosis?

I'd love to hear your stories.


Hi Clair,

My colorectal surgeon was expecting to find it on my colon when I had it removed but there was nothing active. She did say there were old scars on my colon though. I know the motility specialist strongly suspects that whatever killed the nerves in my colon also caused me to struggle with infertility and somehow the endometriosis was included in all that. But for me it was too late to say for sure. I do have 2 biological kids (one fertility treatments, one huge surprise) that was when I still had my crappy colon. Looking back a lot of my pregnancy ER visits were probably to blame on the unknown colon issues.

Hey, Clair. Have you gotten an ostomy from medical issues as well as Endo? ;I only ask because I may have had the same thing happen. I was diognosed with DDD but after ostomy surgery have been dealing with Endo symptoms. Had surgery scheduled Jan 30th but patient before me had a major issue during surgery. My surgery was postponed. I'd like to hear more of your story.

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Having an ostomy because of endometriosis is extremely rare. Endometriosis can implant on the bowel.

Hi Jodie,

How annoying that you haven't found an answer to what has caused all of this for you.

I would think that if it had been caused by endometriosis, they would have seen it when the removed your colon, as it doesn't disappear, just keeps growing.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Gemini,

I hope you don't have to wait too long for your postponed surgery. I hate the waiting!

Can you explain to me what DDD is? I've never heard of it.

I've had endometriosis since I started menstruating as a teenager. I would vomit and faint from the pain, but when I finally went to speak to a doctor about it I was told 'periods are painful'.

So I ignored it went ignored for 15 years, despite me seeking help from many doctors and gynaecologists. Then finally went to a gynaecologist and asked her if she thinks I might have endometriosis, and she said yes, and sent me to an Endo clinic. They decided to operate on me, as endometriosis can only be confirmed through surgery.

During the laprascopic surgery they removed all the superficial Endo tissue (anything which hadn't grown into my organs), and discovered deep tissue Endo on my large intestine.

When my surgeon explained that I would need a much more invasive surgery to remove the remaining Endo, I freaked out and stopped seeking medical advice. For five years I tried to treat myself with diet and herbal remedies. Until I could no longer poop. I'd go for up to 10 days without passing anything but mucus. And the pain was excruciating.

So in November, I went for the surgery to remove any deep tissue Endo they would find. It had spread alot, so they removed parts of my uterus, bladder, peritoneum, and 30cm large intestine.

After the surgery, I felt OK for about 12 hours, then started to decline. I knew something was wrong, but it took a week to realise my bowel had ruptured, and I had peritonitis and sepsis by the time they brought me in for emergency surgery. When I woke up, I had a colostomy.

Sorry, this story has been really long, I hope I didn't bore you to tears, I just thought the details could be helpful for anyone experiencing something similar.


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