Endometriosis UK
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Stage 4 deep infiltrating endo on bowels, ovaries & uterus

Hi ladies, I went for my follow up appointment today after lap and MRI and I've been told I have deep infiltrating endo on bowels and now need a colonoscopy. Have any of you ladies had 1 of these? Anyone been through similar would love to hear your story? Thanks in advance 🤗💖

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I had a colonoscopy a few weeks back. For me it was totally agonising, gas and air had no effect. It was only after the procedure that my consultant said it was so painful as I have a looping bowel. I have a high pain threshold and wish I had been sedated. I am sure yours will be fine, I experienced no pain in my lower colon, it was just when he cane across the first loop in got painful. They pump air in during the procedure which was quite uncomfortable for a couple of days. Everyone is different, I just wish I had been sedated. Also, the bowel prep is not too nice.

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Sounds really bad that. I will definitely be sedated then 😊. Hope yr on the mend now and thank you for your reply xxx

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I had a sigmoidoscopy when I got my diagnosis after my first lap, my Endo was a big lump quite low down. I negotiated to have it under GA for personal reasons. I had no after effects. I had an enema before hand rather than full bowel prep, which was not nice but not as bad as I thought.

Good luck. Xx

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I didn't realise you could have a general anaesthetic with this procedure. I think after reading what I have I might think about having one of those. Thank you for your reply and the good luck 🤗 xxx

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It's not normal at all, i agreed it as a special case due to a past trauma . sedation is common though and for most people is usually fine.

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I had a flexible sigmoidoscopy in October and it was absolutely fine, I dreaded it in advance but honestly the thought was FAR worse than the reality. I read loads of horror stories online but couldn’t recognise anything about my own experience in what I’d read and realised I’d been worried over nothing. If I had another I’d dread the bowel prep more than the actual procedure and even the bowel prep wasn’t awful, closely follow the low residue diet instructions as I think that helps xxx

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Aw that is just how I am and was the same before the diagnostic lap an hysterscopy and I was fine with them and weren't as bad as what I had read or been told. Everyone is different hey. I'm glad your experience was ok and thank you for sharing it with me. Hope mine is like yours 😊and hope you are ok xxx

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Yep I had a colonoscopy back in January and the procedure itself was absolutely fine. I was given analgesia and sedation through a cannula as standard practice. Had some very slight cramping as they pass the endoscope round the bends but that's all. They were very professional and I was made to feel very comfortable despite the perceived indignity of it all!

In my case, which is slightly different to yours, as I had no prior diagnosis of endometriosis, they identified a submucosal mass - basically a bulge protrutuding into the lumen of the bowel, which turned out to be caused by endometriosis, although it took a long time to get to this diagnosis as initial biopsies were inconclusive but that's another story!

I hope this reassures you somewhat xx

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Aww thank you for your reply that does sound very reassuring 😊. I was told this is such a small procedure compared with what I have to have done but when reading some stories it's scary. I just wanted to know what to expect so thank you for sharing. An hope you are getting your endo sorted too xxx

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Do you mind if I ask what your symptoms were? Xx

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Not at all. I am in constant pain in lower back, pelvis, even my bottom as I get sciatic pain which hurts to walk or stand for long periods of time. I have had very long periods that started to be 10 days long a year ago an now I'm lucky to have a few days without bleeding. Also rectal bleeding which started a couple of week ago. Also very fatigued an never feel refreshed when wake up. Hope that helps xxx

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Hi, I had one in August. I had sedation which had no effect on me, it was painful in places as I have a redundant colon (which I only found out during the exam) which means it’s extra long and loopy. Going round the bendy bits can be painful but it’s manageable. Thankfully endo wasn’t found inside my bowel. After the procedure I felt slight discomfort due to the amount of air they had put it but I was fine by the evening. I’m now awaiting an MRI as they suspect bowel/ recto vaginal endo. Good luck with everything xxx

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Hi, what sedation did you have? I can imagine it is going to hurt a lot as I already have a lot of pain down there. I had the lap which diagnosed the deep infiltrating endo an then the MRI I thought everything would show up on that but obviously hasn't. Thank for yr reply and good luck 😊. Good luck to you with your MRI and everything 🤗 xxx

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Oh I can’t remember the name of it but I had the maximum dosage. As somebody else mentioned the bowel prep bland diet and 48 hour fast was worse. I had moviprep which is the one that makes up 2 litres and I struggled drinking it all, my friend had picolax which is only a glass full. I hope they don’t find any endo inside your bowel I was hugely relieved they didn’t with mine. I wonder if my MRI will show anything. I’m a bit nervous. Keep us updated xxx

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The bowel pre & 48 hour fast 😯 doesn't sound good at all. Dont like the sound of any it but has to be done. My lap i was diagnosed with stage 3 an then the MRI showed it was deep infiltrating stage 4. I really hope dont have it inside my bowel. Hope your MRI goes ok. Are you nervous about MRI or your results? xxx

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I think both, I’m nervous if they do find it and I’m nervous if they don’t. My symptoms are very similar to yours, I pass menstrual blood through my rectum when in my periods :( I also get sharp shooting pains at random in my vagina and rectum which is why they are thinking recto vaginal. I’ve had about 6 surgeries near my tailbone in the past due to pilonidal abscesses and they think endo have attached itself in the scar tissue. I just want a diagnosis now. To be honest out of all the tests I’ve had the endoscopy was by far the worst as once again the sedation didn’t work at all.. I guess it’s hard to sedate an insomniac haha. Have you got a date yet? Xx

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Aww well I really hope you get the answers that you want x Everytime I go back they tell me something worse. I also had cyst on right ovary which was removed during lap. I also had bad vagina pains and they are back again. I also have 2 intramural fibroids and polycystic ovaries but the focus all seems to be on the endo. Anything with scopy in it seems to be painful. I might just get put to sleep for the rest of the ops after reading all the nightmare stories. Have you thought about being put to sleep instead of suffering so bad? As if the pains were going through arnt enough hey 🙄. Only seen the gyno yesterday. He's referring me to bowel specialist so will get a date soon xxx

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I have been referred to an endometriosis specialist centre and I am also under a gastronologist who is brilliant. He was the first one to suspect the endo, he said gastric/bowel problems go hand in hand with endometriosis. I like yourself have chronic back pain most days, pelvic pain which is mainly left sided (which is why they think it’s around my bowel plus bouts of constipation/diarrhea) and also left leg pain and nerve pain, sometimes the electric shocks from my back into my leg stop me dead in my tracks. I’m sorry you have other gynae issues too, it feels never ending sometimes doesn’t it. I sometimes feel like I’m losing my mind a little bit. It’s great to have other ladies like yourself with very similar symptoms. Xxx

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Oh yeh I've referred to endo specialist too. There's so many things to remember ha. I had an ultrasound first to what was going on which diagnosed the fibroids an thick whom. I'd been told for years I had IBS an was sent to physio for my back pain. I think all the bleeding rang alarm bells for my doc. I also get like cramp in hips which goes down front an back of my legs. It's hard to remember there are so many symptoms. I wouldn't wish this on anyone feel so sorry for all ladies like yourself suffering with this. How are you feeling mentally? are you tired an low a lot of the time? xxx

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I get foggy headed and live in my pjs unless I have to go out. I am struggling with working full time and literally get home from work and put my pjs on, I have no energy or enthusiasm for most things anymore and I avoid making plans. I feel like a 70 yr old lady. I get hip pain sometimes too plus nausea but I think that’s more the medication. They tried to fob me off with IBS to which I replied oh I wasn’t aware IBS caused spotting between periods and prolonged periods that start with old brown blood. My scan was normal and my gp was going to sign me off there to which I replied with oh and does endometriosis or Adenomyosis show up on an ultrasound. I feel like I’ve had to push every step of the way to even get to this point and that’s been almost 18 months. We shouldn’t have to suffer and feel dismissed. Isn’t it nice to know we aren’t alone even though it’s awful that so many of us are suffering xxx

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HI there! I am so sorry to hear that! It is certainly not a nice diagnostic.I have the same stage 4 endo :( and all of the above! It is pretty bad and horribly painful, I have lost my job and I spend my days at home most of the time, my life is upside down! Have they for sure send you tonhave a colonoscopy? Because I have your diagnosis but instead of a colonoscopy I was sent to have a flexible sigmoidoscopy... well the procedure is almost the same... you would need to prepare for either exam one day before. Which means no eating after 9am depending on the time of your appointment, your bowel need to be clean for the exam did your doctor mention that? you must have been prescribed with a powder mix for you to drink the previous day... this is very uncomfortable procedure so be prepared mentally (it is no nice at all) and make sure you stay at home as you won’t be leaving the toilet I am afraid 😬!

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Aw bless you it isn't nice at all. I'm sorry to hear you lost your job. I am using my annual leave at the moment as I just couldn't do my job properly. I hope they can sort me out quick so I can get back as soon as possible. My gyno gave me full diagnoses yesterday and is referring me to bowel specialist. He said I need a colonoscopy but have not yet had a date. How did you get your diagnoses? I am trying to prepare myself for all what Il have to go through soon but it is hard but can't wait to not be in this pain and to not be bleeding anymore. Thank you for your reply and really hope you get sorted soon. This is not a good place to be in for anyone 🤗xxx

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Oh dear! I have been suffering with endo for 3 years... but 7 years of extreme pain without knowing what it was! Got diagnosed 3 years ago during a laparoscopic procedure was pain free for 8 months and it came back with vegence!!!! After 9 moths of constant pain had another laparoscopy and then he gyno found my condition to be too Severe to continue with the procedure and instead refer me to a endo specialist! Have had numerous appointments and have been in and out of hospital several times! This condition is a nightmare! I have stage 4 endo with severe damage not only in my ovaries but also my bowel! I will be intervened by two surgeons and colorectal surgeon and the endo specialist! It will be a join surgery (major one) so I can’t wait to get rid off this pain and try to live a normal life again! X

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