Endo on the Bowls

Hi all. I've just been told I have endometriosis on my bowl which isn't a surprise and had already been discussed. The consultant has referered me to a consultant who deals with the bowl( sorry can't think what they called😌) to have a endoscopic scan. They have told me it will be some time as there is only one doctor who performs this proceedure and deals with all the cancer patients also. Which I completely understand I just wondered if anyone has has a similar experience and any information. I have been told that if the disease is into the wall of my bowl than I will need more surgery and colostomy bags have also been mentioned. Thank you all and I do hope you are all having a good day X

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  • Hi Endo Lou

    It sounds like you have been having a rough time and you understandably seem very concerned. I cant really offer any real advice but want to wish you well and hope that you are managing the pain and anxiety as best you can. Sending you lots of positive vibes xxx

    I suspect that I may have similar... do you mind if I ask you what your symptoms are and how they discovered the endo on the bowel? xx

  • I was diagnosed with the laparoscopy but have now been referred to a specialist to find out the extent of the disease. I have bloating, constipation, diarrhoea when I have a period, wind, painful bowl movements and suffer with back pain.

  • I'm in the process of going through this myself. I had a laparoscopy on 12 September and Stage 4 endo was confirmed. My endo specialist already suspected he'd need to get a colorectal surgeon involved due to my symptoms, but the lap confirmed this as I have a rectovaginal nodule, extensive endo around my bowel and in the pouch of douglas. Basically it's a bit of a mess in there!

    I have my first appointment with the colorectal surgeon on 13 December with the aim of a second op in January. In the meantime I'm on Zoladex injections to stop my hormones and stop the cysts from forming on my left ovary as this was giving my extensive and crippling pain. The colorectal surgeon may need exploratory tests conducting before my op, and I'm mentally preparing myself for a colonoscopy/MRI etc.

    My second surgery will me a joint bowel and endo surgery. They may need to resect a section of my bowel, which could result in a colostomy bag. That said, they try and aim for this to be temporary just while the bowel heals from the op. It also looks like the rectovaginal nodule will result in them removing a section of my vagina...I have no idea what this means! This op is quite a bit one compared to my first lap (I was in surgery for a little over and hour, and recovery was swift. The next one is a half day surgery, a stay in hospital and a 4/6 week recovery).

    Have you had a laparoscopy to confirm the endo on your bowel? Are you seeing an endo specialist? I ask this as abnormal gynaecologist isn't experienced enough to handle this type of endo.

  • Yes had a lap 2 years ago which they diagnosed me with endometriosis removed a large cyst gave me the pill and discharged me! After some fighting I M now under a specialist who hasn't repeated my lap as they have enough info to know my bowls are badly diseased. I found out this week and I am disgusted that the doctor should never of discharged me and I've been suffering for some time thinking I need to just get on with it.

  • I haven't had any laps yet. Been having symptoms for 5 yrs been bounced from gastro to gynae & back again. Waiting on colonoscopy. Went to have the coil put in on weds & after explaining all my symptoms excruciating pain for bowel movements & wind, bleeding from back passage during period, diahorrea, constipation she done a bimanual exam and felt an extensive deep endo nodule in front & back passage. I've been referred for an mri to see how extensive it is so can decide which surgery to proceed with as a daycase lap won't do & will most likely need collectrol surgeon so they can do the endo & bowel surgery at the same time.

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