Stoma

[Sarahdione]

Has anyone had to have a stoma due to endometriosis getting in the bowel?

I had it confirmed last week that I would have to have this procedure. Hopefully it's only for 6-9 months.

Feeling really scared and been really teary.

I'm on hormone jabs and HRT ( 7 months so far )

[Ash24601]

I had endo removed from the left and rightside of my bowel last year. It was found in a lap a year prior but my consultant wanted to wait for a colorectal surgeon.

Unfortunately I have had issues since, which is suspect is scar tissue, so I am awaiting another op.

I have been assured time and time again that I will not need a stoma. At this stage though I’d rather they take my whole bowel if they have to. There are some very body positive instagrams and you tubers that helped me come to terms with the possibility. Check out Hannah Whittington or Rebecca Zamalo on YouTube, they’ve shared their whole story.

May I ask what symptoms you currently have? I really struggle with obstructions so constantly trying to figure out how to eat better.

[Sarahdione in reply to Ash24601]

I am on hormone jabs every 28 days and that's stopped a majority of the pain. Before the jabs, I had constant pelvic pain that got unbearable with my period. I was struggling to walk. I had real problems with my bowel control ( which is still a bit of an issue)

Have you had an MRI?

[jull]

Hi, had my "temporary" stoma for nearly three years now due to severe endometriosis. It takes some getting use to initially, but once it settles down and you have a routine it's easy to deal with.

Hopefully mine will be reversed sooner or later, had it long enough now!

[Sarahdione in reply to jull]

Omg......why is it taking so long to be reversed?

[jull in reply to Sarahdione]

Hi, i think it's because they basically want to get rid of everything, full hysterectomy, ovaries etc but i keep refusing. They say they can't get to all the endometriosis if i don't agree to the operation. I'm only 31 and don't want to go through all that yet, still shouldnt be taking this long though.

When i eventually have the operation to reverse the stoma plus other things they say they can't do anything more for me.

[Sarahdione in reply to jull]

I'm 43 and I think the acceptance of having everything removed is a little easier. when I was early 30s I was the same as you and fought against a hysterectomy. I had 1 child at 25 and wanted another. Once I hit 40 and pain was getting worse, I collapsed. This helped me accept the drastic surgery.

I'm looking at my operation to be done in December. Did you find going to work with a stoma difficult? Xx

[jull in reply to Sarahdione]

It takes a few months to settle down and it's important to get the right bags as there can be leaks. There will be a stoma nurse who helps you with everything. It's honestly not that bad, works been fine, no problems at all.