My endometriosis has spread to my bowel. ... - Endometriosis UK

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My endometriosis has spread to my bowel. Anyone else been diagnosed with it here.

Leelou97 profile image
19 Replies

I am going into hospital on Sunday 25th Aug to have it removed. Had it removed from my ovaries in Dec last year. I am having worse symptoms with this and pray to god that this op will work.

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Leelou97 profile image
Leelou97
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19 Replies
BecciBritt profile image
BecciBritt

Hi i had 2nd lap last month and I've found out i have a lot of adhesions today on my bowel and its also stuck to my pelvic wall, gynae didn't say anything about it being endo related though, my endo apparently is not active at the moment, which is one positive. I'm being referred to bowel surgeon to have it removed. Sorry I can't help as its all new too me.

Leelou97 profile image
Leelou97

Hey thanks for replying. I am very nervous I was referred to a bowel surgeon as well. Was told it was a bit risky, but can't live with the symptoms any more. Hope it all works out for you.

Sweetcheeksid profile image
Sweetcheeksid in reply to Leelou97

Hey I'm due in oct the 22 for full hyst also got endo in bowel and bladder, it's been going on twelve yrs thanks to the legend dr jones grrrr so gona have one big op deeding it really hope urs goes ok xx

Leelou97 profile image
Leelou97 in reply to Sweetcheeksid

Good luck with yours. Let me know how you get on xxx

Shelly085 profile image
Shelly085 in reply to Sweetcheeksid

Hey what was your symptoms for endo on bowel an bladder? As for past couple of months it's been killing me to go the toilet when on period.

Emilyrush80 profile image
Emilyrush80 in reply to Leelou97

What where your symptoms ?

Impatient profile image
Impatient

I too have endo in bladder and bowel. Endo can be on the outside surface of the bowel, inside the bowel walls and also on the inside lining of the bowel. Three separate locations.

The surface endo is much easier to remove, but could grow back if only lasered and not actually excised (cut) away.

Deep endo and inside surface endo can be left alone or can be cut out. Because the bowel is a tube, they usually take a section of the tube away (called a resection) then stitch the two ends back together minus the removed bit.

normally this would be done as two operations a few weeks apart.

For this you need a surgical team including an endo specialist and colorectal surgeon.

Here are some of the webs i have found on bowel endo and put in my saved endo webs list:

This is a bit heavy but very useful read:

mjwcooper.com.au/patient-in...

ncbi.nlm.nih.gov/pubmed/163...

news-medical.net/news/20120...

(this one has illustrations)

danmartinmd.com/rvendo.htm

more photos and pics

gynsurgery.org/topics/endom...

Leelou97 profile image
Leelou97 in reply to Impatient

Hey thanks for all the info xx

Catt83 profile image
Catt83

I had a lap on 21st jun and they found endo on my bowel. It had created adhesions that had attached it to my uterus. The pain is so severe I had been on IV morphine monthly. I am now on prostap injections for 6months to prepare me for a bowel resection. They have also stopped the pain temporarily. Very concerned about the bowel resection as been told it means I will need a stoma. Would be interested to here if anyone else is in this situation. Hopefully it sounds like they can remove yours without the large surgery. Xx

soph86 profile image
soph86 in reply to Catt83

Hi ya i had a sigmoidoscopy and it was found that the endo had penetrated bowel i meant to akso be havein major op to remove an overy aheasions an endo but gitta wait til Monday to see whats honna happen im really worried. I too have been in suvere pain but have only been given tramdol atm .hope u are well

teacosey profile image
teacosey

Just thought I would add to other's comments... My Endo Surgeon referred me for a colonoscopy because I had so much bowel pain and bleeding / mucus from the bowels. Almost daily. Still do.

There was concern that my endo must have penetrated into my bowel walls, so I was referred on to a really good Endo-specializing-colorectal surgeon who knocked me out for the investigative procedure--camera up the bum, all the way through the whole digestive system.

They found that the endo hasn't penetrated into my bowel at all. The colorectal surgeon said that a section of my bowel has gone hard from all the adhesions on the outside of it. The bowel is supposed to be a floppy, soft tube. But because of the adhesions on the outside of it (which he called nodulization) a whole section has gone hard and so all waste irritates it there. Hence the pains, mucus and bleeding.

They are not going to do a bowel resection for me, as yet. He reported back to my Endo surgeon and we discussed another Lap (will be my third) to remove the adhesions from the outside of the bowel again. Hopefully that will work.

Just thought I would add this experience in case it helps in some way.

Tea Cosey x

teacosey profile image
teacosey in reply to teacosey

PS. The only thing that I have found that helps all the bowel problems for me is the "Endo Diet". It isn't a cure, but it does help. And, for me, anything that helps is better than nowt!

stevieflp profile image
stevieflp in reply to teacosey

Hi - I also hd endo on the outside of the bowel and successfully had this shaved off (excised) with no further issues to-date (2 years 8 months ago)

in reply to teacosey

Hi, thankyou for putting this - i found it really helpful, how are you now?x

EllaRuby profile image
EllaRuby

Hey Leelou97,

I've also got endo on the bowel penetrating all the way through. It was found with a sigmoidoscopy and mri. I've got the first of 2 ops next Friday. They want to see how extensive the endo is everywhere else, so then they can inform me of the length of time of my next op and the risks involved. My endo surgeon has already said the part in the bowel will be a full resection with a possible temporary bag. Not looking forward to that!!

Good luck on 26 Xx

Leelou97 profile image
Leelou97 in reply to EllaRuby

OMG yours is much worse than mine. Good luck for next Friday. Please keep in touch and let me know how it all goes for you xx

NatAbad profile image
NatAbad

HI there,

Lots of replies here. I have advanced rectovaginal endo. I had a laparoscopy in April to excise it from bowel wall. Prior to this I had a Sigmoidoscopy with colorectal surgeon to check in bowel or not. Do not let a surgeon perform this unless Endo specialist as it is risky operation due to the fragility of bowel wall. I did find that changing my diet really helped. Have you tried this. Also Prostap really helped too. Good luck with everything. Best wishes.

Dani-Leigh profile image
Dani-Leigh

My endo stuck my bowel down so the surgeon basically had to slice carefully to detach it and put or back up where it's supposed to be. I have issues with going to the toilet and was told following the op that i have ibs. It's not so bad lately so I guess it just flares up and down. I didn't know any different from my last op but my first op I was in over night then I went home but the second time I was in hospital for 4 days x

cath-27 profile image
cath-27

Hi i had it on my bowels, and now think ive got it back again, all my symptoms are the same as last time, going the toilet more, pains down my legs, mood swings, weight gain, ive just had the gnrh injections and its making me feel worse, hope things are better for you once you have had it removed x

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