Adhesions?: In 2007 I was diagnosed with... - Endometriosis UK

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Adhesions?

Jooniper profile image
8 Replies

In 2007 I was diagnosed with Ulcerative Colitis and had the worst flare in mid November, since I was diagnosed. I was diagnosed with endometriosis/adenomyosis by lap and MRI in July 2021 at the age of 45.

On Friday, I had a colonoscopy as I am still suffering with symptoms from my UC flare. I have had a few of these in the past and though unpleasant, with sedation I have been able to see the procedure through. Despite gas and air on top of sedation, they could not complete the procedure this time round as the camera reached an area that was too painful for me to cope with. I was so out of it I remember little but was sobbing when I came to. I was told when I came round I’d need further CT scans to look for adhesions. The lap did not report any endometriosis on the bowel. I’ve been on Zoladex/Mirena pretty much since the lap and have not had a period since Autumn 2021. Has anyone else been diagnosed with adhesions on the bowel and what happened to help them?

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Jooniper profile image
Jooniper
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8 Replies
Avourneen profile image
Avourneen

A lot of people have endo in the bowel if they have it in the pelvis. Did you have an MRI before your lap? That should have shown up if it was in the bowel. A colonoscopy won't show it. I had a colonoscopy that was hockingly painful and later on had an MRI which showed lots of endo through the bowel. You can have another lap with a gynae and a bowel surgeon and they can try to remove it from the bowel, I did but they missed a lot of endo and left it in and now I can't have another op as scarring is too bad. It's definitely worth getting an mRI to check and see if the endo is also in the bowel, normally they can remove most of it and that should help. Good luck xx.

Jooniper profile image
Jooniper in reply toAvourneen

Thanks for replying. The MRI I had was a week after my lap but they only told me two places were identified as having it after the lap. I guess I’ll have to wait for the CT scan and trust the process.

Firhd profile image
Firhd

Hi,

I have endometriosis adhesions on my bowel and recently had to have a colonoscopy. It was intensely painful when it reached on particular point and I too was crying out. They did manage to complete the procedure but it was intensely painful. I had a colonoscopy previously and it was uncomfortable but nothing like this.

I have had a previous laparoscopy (2018) and no bowel adhesions were seen there but I was told I had them in December last year after an MRI because my symptoms had become worse and bowel symptom’s particularly an issue. I’m now booked in for a full hysterectomy and excision privately as the wait on the NHS was over 18months.

Jooniper profile image
Jooniper in reply toFirhd

Thank you for replying. It just feels like I’m going around in circles a bit. Perhaps my IBD issues have confused things too. I guess I hoped with the Zoladex/Mirena I wouldn’t get any more endo.

Firhd profile image
Firhd in reply toJooniper

could it be possible the adhesions were missed during your first procedure?

Jooniper profile image
Jooniper in reply toFirhd

I think I am going to have to ask that question!

Fireflygem profile image
Fireflygem

Hi I went in for removal of a dermoid cyst as well as my ovaries and tubes, they found adhesions these mean that organs have attached to either the outside wall or other organs, for me my ovary with the cyst had twisted and attached to the pouch of Douglas, my womb had attached to my bowel and bladder. Essentially when you are moving it's tugging your organs which explains alot of pain as I thought I had endometriosis before my op to remove my ovaries as the specialist was having a look for that as well, prior to that I spent 5 years due to covid unable to bend at the waist without pain luckily I'm in recovery now only the odd scar tissue smarting when I'm run down or ill like I had covid jab and that made it rear up a bit, your doctor might suggest keyhole surgery to remove them and free your organs hopefully this helps 😊

Jooniper profile image
Jooniper

Thank you. Hopefully, after the CT scan they will know more and have a plan. I’m living on zapain right now, just to get through the day and the pain is constantly a burning feeling with sudden stabbing!

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