Diagnosed DIE of rectum/bladder/ovaries/POD

[NevBean]

Hi, 24 and just been diagnosed with DIE of the recum (5cm from opening) and large endo adhesions on uterus, bowel, bladder and ovaries and obliterated pouch of douglas.

I haven't seen a consultant yet for surgery options - just wondering if anyone had similar diagnoses and what they went through?

I haven't had kids yet and don't know if I can now??? Did anyone with similar endo have a stoma? Thought of needing a stoma kind of terrifies me.

Any advice or personal stories are so welcomed, feels very isolating when no one around you truly understands how it feels...

[Nickyaa]

Hi lovely,

I've had pretty much the exact same diagnosis 6 weeks ago. Just had letter from specialist clinic requesting an mri. Like uou, would love to hear from people who have had surgery and what it entailed etc.

Sending you love xx

[K2023]

Hi, sorry to hear you are going through so much at such a young age . Have you had surgery before ? . I’m just going by my experience having endometriosis since 17 and several surgeries , I have had two children . My last surgery was a total hysterectomy due to many different things going on one being DIE but even then I said no initially to hysterectomy and they were fine with that so I don’t think you will need to worry about hysterectomy.i am 48 now .I had a bowel resection and dissection and didn’t need a stoma try not to worry to much on that one they do have to warn you of it .i had a multidisciplinary surgery urology and bowel surgeons involved the surgery was over 8 hours long and other than menopause the recovery was fine .

I hope you get to have clarity soon and speak to consultants to ease your mind . Take care x

[NevBean in reply to K2023]

Thank you for this. I have only had a diagnostic lap where he did nothing and said he will need a bowel surgeon and probably urologist with him to excise it all. I haven't seen him for a follow up yet as that was only 2 weeks ago. Fingers crossed it won't be as life deleting as it feels right now

[Meandmyendo]

Hi there, I have stage 4 endo on my sigmoid colon, bladder, pelvis. Mine was diagnosed via MRI following a colonoscopy.

I currently have a temporary stoma. My endo surgery was put on hold so I could start IVF. Ironically the week we were due to have the consultation to start with the clinic I had a bowel obstruction and had to have emergency surgery. This surgery has left me with a stoma. It’s been really hard to process as it all happened so quickly BUT I’m adjusting. It’s not what I would have wanted but it’s equally not so bad. I’m on the mini pill to stop my periods whilst I recover. I’m only 4ish weeks post surgery but it’s ok. I’m waiting for a plan of the next steps as ideally I’d like to do the full endo surgery now before IVF. But I’m need a colorectal and urologist with my endo consultant for the surgery.

Im not sure if that helps but I wanted you to know it’s not so bad. It’s an adjustment and with Endo I think we are used to those!