Endo near the bowel

[Heidijayne]

Hey all, new to the forum not new to endo I'm afraid. I was finally diagnosed about 4 years ago after years of problems And am about to hear news on if I need a second lap. Due to the endos location (close to my bowel) my surgeon has flagged that it could be quite risky and that I may need extra help from the gastro surgeon and a potential re routing of my bowel temporarily etc there isn't a huge amount of info on the risk of endo on the bowel and more specifically the risk of having/not havingn the op or the risk of needing to have more evasive work done on my bowel. Have many people had experience here and did it result in an bowel reconstruction work etc? I see my surgeon on fri and am nervous about what the solutions are here.

Thanks!

Heidi

[NatAbad]

Hi Heidi, I have rectovaginal endometriosis and my bowel wall was stuck to womb with extensive endometriosis. They asked colorectal surgeon to examine me -had sigmoidoscopy-and usually they are asked to be present during operation. I didn't have bowel reconstruction so ensure you know why they have mentioned this. Make a list of questions to take with you. The excision of endo did help with the pain management though. Still on mini pill to keep the endo at bay. Good luck and positive vibes.

Natalie X

[NW248]

Is the surgeon one of the endometriosis specialists or just a normal gynae? It is only meant to be the specialists in endometriosis that do this sort of surgery as they are better trained and there's likely to be a better outcome.

[Angie205276]

I had stage 4 endo which included my bowel being stuck to my uterus. I had to have my endo surgeon and a bowel surgeon in the operating theatre.

The bowel surgeon had to remove some of my bowel which resulted in my hospital stay being longer than it would have been (I was in hospital for 5 days to ensure my bowel was working properly again). The bowel surgeon continued to visit me daily during this time so I am assuming this was the higher risk outcome of the surgery as I didn't see the endo surgeon after his initial visit.

There was a risk that I would need a colostomy bag however this was not required in the end as the surgery was successful. I didn't require any type of reconstruction surgery for my bowel.

My endo surgery was extensive as everything was stuck together. I couldn't get around much in the first three weeks and couldn't go back to work until 8 weeks after the surgery. Even at that point I was still very slow to get around.

I don't know how much the bowel part of my op contributed to my long recovery time but it was way longer than the surgeon estimated (he estimated 4 weeks). Keep that in mind when you are planning for your op.

Just as an aside, the surgeon put a Mirena IUD in during the op to stop my bleeding.

It's been 18 months since my op and I am doing well. The Mirena has stopped my bleeding completely which has been a life changer for me. The most dreadful side effects of the Mirena are the anxiety and depression it has caused. This is not the case for all Mirena users but it has definitely affected me. I am not sure about taking out the Mirena as I don't want to risk having another op.

Your surgeon needs to be very clear with you on the risks associated with the surgery, particularly regarding the bowel. He or she should tell you what can go wrong, how high the risk is of something going wrong and what the potential outcome will be for you personally if something does go wrong.

Don't be afraid to ask lots of questions. It's not nice to hear these things but you need to know this to ensure you can make an informed decision.

Make sure a bowel surgeon is working in conjunction with your endo surgeon in your diagnosis and during the operation. My two surgeons worked together.

In my case, my life before the surgery was awful and full of pain so I decided that I would accept the outcome rather than live with the pain.

I wish you all the best with everything, and stay strong xx

[blackbud in reply to Angie205276]

It's good to hear success stories. I too have bowel, bladder, womb stuck together and have been advised to steer clear of surgery for as long as possible due to the risks, you get rid of one problem and gain another? Luckily I'm in a period when things are settled and not causing problems but I do worry about the possibility of future surgery so it's reassuring to know that it's possible.

[Booboo08 in reply to Angie205276]

wow loads of info. thanks for sharing xx

[mablesky]

Hi there

Yes I have had endo removed from large bowel but only shaved off

I am going in again next week to have endo removed from small bowel I think they said a small resection with colo rectal surgeon at an endo centre .

As. For having to re route the bowel I think it depends on how much bowel they have to take and where it is .

I was of the understanding that if it's causing no problems then they tend to leave it but I may be wrong with that one.you are right there is little imformation about leaving endo on the bowel as I said before it's very individual .

Wishing you all the best with what ever you decide

[Wind_mill]

As someone else has said, please please please make sure this is at an accredited/ specialist endometriosis centre. I was told before my surgery that it could result in having a colostomy and stoma bag as they didn't know how deep the endo was on my bowel however I didn't end up with this. They managed to untwist and free my bowel and take the endo off the surface as luckily it hadn't gone through the bowel wall. I had a team of 4 consultant surgeons in my op - one being a colorectal surgeon. It really is important to get someon who is experienced to do it. I had a previous op (which wasn't at a specialist centre) where they accidentally went into the bowel wall as they were not skilled enough and there was no colorectal surgeon present only a gynaecologist and a urologist. Luckily it didn't do much damage but it was then that they had to stop the operation and subsequently refer me on to a specialist centre.

[Jo2481]

I have stage 4 endo, which was only diagnosed in March when I had to have a 20cm cyst removed (and my left ovary). I have since had a mri scan which showed I have a large nodule on my bowel. I am currently waiting for a colonoscopy to determine whether this can be left or has to be removed. But because I have had previous bowel trauma then they say I can only have more surgery because of high risk. So if they need to remove it I also have to have a full hysterectomy and the endo removing, which I haven't had done yet. Big decisions as I'm 34 and haven't had any children yet. I have been told that I would have to have a stoma to rest my bowel for about 3 months. I'm not sure if I've answered your concerns but your not alone. Best wishes

[SatansLeftHoof]

Hi all, I have a similar thing, endo on and between my bowel and bladder, and was told that if the coil failed (which it has) that I'd need further surgery. The consultant said I'd need to think seriously about it as it (the surgery) would require a specialist bowel surgeon as well as the emdometrial specialist and I may end up with a temporary stoma bag. This was after I had been told by my gynaecological surgeon post operatively the day before that all the endo had been removed, the next morning I had that bombshell dropped. She didn't tell me any more, only insisted that I'd only need two weeks sick leave, despite the fact I do a manual labour job. Do you think she is trying to scare me to put me off pushing for another surgery? I have my next appointment next week and I am dreading it. The thing is I have tried all non surgical treatments they've offered me (zoladex, combined pill, progesterone pills, the coil and painkiller therapy) and I'm worrying they'll just fob me off with "try the coil a little longer" even though I was expressly told I'd know whether or not it would work within three months - it'll be over three months at the appointment.

[Heidijayne]

Thanks so so much for all your advice. Thankfully I see a great specialist at chels and west hospital. I've had a lot of tests etc over the past few years and they've never found it in the bowel itself despite the symptoms but after seeing the surgeon again for the first time since my op 2 years ago (I've been seeing nurses and gynae' during that time) he did an internal exam and could feel it. It's caused me countless issues and discomfort for a long time and its always good to hear I'm not going mad (I'm sure you've all felt like that at somepoint) I kept being told they'd got it all, so knowing it's still there causing issues was strangely comforting. Unfortunately I didn't get on well with the coil it sent my hormones raging and the mood swings almost cost me my relationship! When I spoke with the surgeon he basically said that because of where it is its risky, there could be issues etc it's juts difficult as there are no statistics being given I.e. Is it a 4/10 chance I'll end up with a (at least temporary) stoma or a 8/10. I'm only 27 and I just don't think I can handle that yet and if the risk is too high I'll jusy continue to deal with it but if there is a chance to get rid of it and clear the symotoms all be it for a few years I'll actually be pretty happy. I had an mri so they could see if there were any changes since my last one (which always confuses me as the endo was missed a few times during an mri before the diagnosis). I see the surgeon tomorrow where we're going to talk about the options! Watch this space.

[Meggy30]

I am kind of in the same situation. I have been trying to concieve for 3 years now and back in sept I had a lap to diagnose endo. I met with my gynae consultant on Friday and she has said the endo is attached to my bowel and has damaged my left tube. She said it is moderate to severe endo. She has referred me for if as I am just not conceiving for whatever reason. She has said she advises I have the endo removed with more surgery where she will try to do another lap but maybe needed to be cut with bigger incisions. I'm just concerned about the damage that can be caused to the bowel in the process. I think I really need to find out how deep she thinks the endo is before I can make an informed decision . She said I could possibly suffer with pain if I was lucky enough to concieve with if due to the endo on the uterus. Sorry I haven't been much help but think I am at the same undecided stage as you. Good luck