hi everyone. I’ve been waiting for over 12 months now for a lap to remove endo. I’ve said for years it’s on my bowel but it’s always put down to having ibs (which I dispute even having). While waiting for surgery, they were going to check my mri scans which I had at a different hospital and have finally agreed I have endo on my bowel and need a bowel surgeon involved with my surgery. I can’t explain how I feel. It’s like I’ve finally been believed. Im almost happy, but happy I’m finally being taken seriously rather than happy I have to have more serious surgery. I now have a telephone app with my bowel surgeon on a couple of weeks. Then to wait for a surgery date.
has anyone got experience of bowel surgery for endo? Can it still be done keyhole? Any questions I should be asking this surgeon?
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Mustang2598
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Don’t know if my answer is really going to help you as I didn’t have the surgery but just to tell you the steps I had. I have severe bowel endo that was diagnosed by lap, nothing was removed at the time, only had the IUD placed. Then I got an MRI to see how deep, then a first appointment with a bowel surgeon that specialises in endo who gave me all the stats of what could happen if it goes wrong and how the procedure goes.
Then I got a Flexible sigmoidoscopy which is when they put a camera in your butt to check if you have endo directly in your bowel. If you do then it might be a more complicated surgery. I don’t have any.
He told me it would be a keyhole surgery in any case, performed with a gynaecologist and bowel surgeon.
After reviewing the results and talk to my bowel surgeon and gynaecologist I decided to not go ahead with the surgery at the moment. I have the luxury to have private health care with my fiancé’s work so I don’t have to wait as long as with the nhs.
Regarding the questions you could ask. If they don’t tell you automatically, I would ask for the risks.
Mainly I would ask where exactly is the endo if they can tell you how deep and what is affected. Understanding where and how much can help you decide what you want to do.
Yes I had endo on the bowel but it was found by accident during an operation, they thought it was possible ovarian cancer, it wasn’t it was endo. Most was removed by the oncologist gynaecologist but part was left due to possible damage to the bowel if any more was removed. I also had my ovaries removed at that time so my situation is probably different to yourself. I did have pain going forward in the hip area where endo remained but this had reduced significantly. I’m glad it was found as Drs didn’t believe me before.
I'm having my surgery in a month to remove endo on my bowel. The plan at the moment is keyhole, but they have said it may change to open depending on how much needs to come out if that makes sense. At last MRI, over 18 months ago, it was a 5cm section of bowel to be removed. I've only ever spoken to my gynea surgeon, but I have been sent stacks of info on risks and procedure which explains loads.
yes I am. It’s them that are doing the surgery and they have a bowel surgeon through them. They were doing the surgery but kept forgetting to ask for the scan from my local hospital which now they eventually have.
Hi! So sorry to hear of your issues but pleased you got your diagnosis also! I have deep rectovaginal endometriosis also and was misdiagnosed as kidney infections and ibs for years… I have just been diagnosed when I was having laparoscopic surgery to remove my womb, and they removed the ‘visible’ endometriosis on my bowel also. I am concerned that I still have endometriosis in my bowel that would mean removing part of my bowel to eliminate completely… however, I need to have my follow up with both the gynae and bowel surgeon in a few weeks to discuss and I also hope that my pain will be significantly improved in any case given the removal of my pelvic organs and the endometriosis that they could see. All the best with your treatment!
they only diagnosed endo about 5 years ago when I had a melon sized cyst removed from my ovaries which was endo. They said then they had scraped some off my bowel but I’ve still struggled for them to agreeing have bowel endo. It was a relief really as I know my symptoms.
Firstly well done on pursuing what you knew was wrong! It's always a challenge!
I'm currently waiting for surgery - I'll be having a hysterectomy. Because they think from the MRI that the cyst is stuck to the bowel, I'll need the bowel surgeon there at the same time. They have said they plan for it to be keyhole - unless they have to puncture the bowel to un-attach the cyst. But they seemed pretty confident it could be keyhole
hi, hope you don’t mind me asking on here but what were your symptoms? I myself have been fobbed off with IBS for two years, got all the symptoms of Endo, currently waiting to see a private specialist in August. I would also myself be convinced 1 I have Endo and 2 it’s on my bowel so I just wondered what your symptoms were in particular that made you push for diagnosis?
It’s hard to push when you’re the only one being like I think it’s this, NHS just don’t seem to care or have any knowledge whatsoever!!!
hi. I don’t mind at all. I actually have my surgery next week.
I get a horrible pain in the middle/bottom of my abdomen. It’s like I really have to go to the toilet and that’s the only thing that relieves the pain. Sometimes I just can’t go though, or if I do go it returns almost immediately. This used to be worse during periods when I had them. I also go between constipation and diarrhoea though Kai it constipation these days. The pain at times makes me feel sick. I also get very bloated. I’m told you usually get bleeding with bowel end but I’ve never had it. My worst symptom is by far the pain in my central/lower abdomen.
No ibs medication has ever helped. The only pain relief that seems to help at all is tramadol.
Where did you have you MRI taken from? I know I've got endo on my bowels on top of my lungs but never got an MRI for it! And dumb doctors who really didn't know about endo (had to explain it myself), said it was IBS (doesn't matter since anyway endo makes your intestines sound like IBS). I'm suffering, yes, and waiting for a 'real' specialist to tell me let's do a laparoscopy! Who's the doctor who agreed to do the MRI for your intestines?You've got no thoracic endo by the way? I'm going to follow you because I'll certainly be next having a major surgery if I fall on the right specialist. I know you can get a pouch for three months (from what I've heard, it's OK, that's manageable).
have you asked for a referral to a specialist endo centre? I got my mri done by my local gynae and then they referred me to the specialist centre in Preston. It was only when a specialist radiographer looked at my scans they confirmed there is evidence of it on my bowel and rectum. They already knew I had endo at this stage because I’d had a very large cyst removed which was endo. It’s taken 2 years after my scan to get this surgery. I’m still not sure if the plan afterwards as I can no longer take prostap. I guess I just have the lap and see what happens after.
Where's the centre in Preston? I should definitely check it (I'm usually not far from there and can travel anywhere anyway)! I've been to an endo specialist but he was more of a jerk, except giving me a pill to stop my periods...
what’s the pouch you mention for 3 months? Also where are you based? You should be able to find out where your local specialist centre and ask your gynae to refer you.
I had an MRI just after Xmas which confirmed severe rectovaginal endometriosis, bladder and ureter affected, chocolate cysts and adhesions on my diaphragm.
I have had to have consultations with each specialist. The colorectal surgeon explained that he cannot be certain to the extent of invasion and what removal technique will be needed until the surgery. Worst case is a stoma bag, the length of time for this is dependent on the severity. It could be 4 months, it could be a year. Best case is no invasion into the bowel and only adhesion(s) to the outside. This will most likely be removed by shaving. He stated that if the worst case he wouldn’t necessarily need to open me up and keyhole would still be possible to achieve the desired result.
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