Anyone here been told they need a special scan done (only one scanner in Wales) and they will need a colostomy bag due the the serverity

Of endo? Been told I am compeltely riddled with endo after my lap yesterday. And been told it's attacked my bowels so bad I'll need a colostomy bag fitted and my bowels removed to cure it

So much worse than I was expecting and I'm only 20years old.

I don't know what to do :( not only that I was waiting for my operation for a year and a half n if I hadn't waited it wouldn't be this bad... Do I have a legal case?

Help?

:(

10 Replies

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  • Hi kimmy,

    Sorry to hear that.

    What sort of scan is it? What probs have you had with your bowels? Xx

  • Three years ago I had a sigmoidoscopy be cause I was getting bleeding from the back passage. But they didn't sedate me so I couldn't stand much of it so they didn't go up very high. They didn't find anything. They a year later my period pain got bad and I was in n out of hospital with that. One min staying in over night for an operation in the morning n then being sent home by another doc in the morning. That happened 4 times. Now I've finally had the op and all the endo has eaten away so badly at my bowels that they think they will have to be removed before they collapse :(

    The sergeon asked if I was ready to have children as it could stop the endo in its tracks and maybe stop me from needing a colostomy done after pregnancy if I'm able to conceve :/

    I'm unsure of what the scan is called :/ but the sergeon said there is only one place in Wales you can have it. :/ it's like. Camera going inside but I think it picks up on blood patterns etc inside

    Xxx

  • Have you asked to be seen by a endemetriosis Specalist ? Have they not tried you with hormone treatment ? (Injections in the stomach) xxx

  • I'm seeing one already it's that department that has diagnosed this :/

  • 1 year wait doesn't make a whole lot of difference to the severity of the endo situation. I wasn't diagnosed till I was 43 --a 29 year wait !!!! It was a mess by then I can tell you. The odds are your endo has been there since you were born, and became active when you hit puberty. It has had probably around 8 years or more to get to the stage it is now at. 1 year would not make that big a difference. It doesn't suddenly just appear on a wide scale as deep invasive endo. We can't know for sure how long it takes endo to nest somewhere and start causing enough pain to have you screaming the walls down in agony, but it will be a lot longer than a year of growth to have deep endo as it is slewing away its new cells with every period and bleeding and a lot of that debris is reabsorbed back in to the body till next period arrives.

    So on the grounds of having a legal case ..join a mighty long endo queue. The average wait is 9 years in the UK for a diagnosis. I first had problems (like many others) as soon as my periods kicked in. Waiting and waiting is part of what we all have to put up with. It is sooo wrong, but there are just far too many of us and far too few endo specialist surgeons and even fewer endo expert colorectal surgeons. The waitings lists are because of that shortage and there is nothing we can do to resolve that.

    I also have bowel endo, and it is annoying as anything having bleeds from the rear end. I have bladder endo too and pink pee when that happens.

    You don't have to have the bowel resection op if you don't want to. It is something you must decide if now is as good a time as any or if you want to wait a while and may be have it done later on. Depending really on how much it is currently impacting the trips to the loo. If you can cope with it and still have a bowel movement then you might want to have the other endo seen to first and get through that then have the bowel resection done later on.

    I have opted not to have mine done for now ...not yet anyway.

    I had open surgery big op 2 1/2 yrs ago and that took such a long recovery time that I am not yet ready financially or work wise or anything wise to be out of action for such a long time again so soon. I can cope with it as it is at present.

    You won't need all of your bowel removing. They cut out small sections or laser them, it is only the big bulky lesions that are blocking the pathway of poo that usually require a section of bowel tube cut out, then you have a colostomy for a few weeks to divert the poo from the wound site, then a few weeks later the 2nd op to reverse the colostomy so your bowels take over again. There are quite a number of ladies that have had the proceedure.

    It is a long recovery and a major op, so you do need to prepare for after the op when you come home. There is a forum on Healthunlocked for Ostomy. Click on Communities on the green bar at the top of the page then select letter O and you will find the forum.

    Bowel endo is not unusual and each of the endo specialist centres in the UK has an endo specialist colorectal surgeon or two on their team. It affects up to 35% of endo ladies. That is quite a large number when endo is somewhere between 10 and 20% of all women. Hence the waiting lists.

    I have no idea what the special scanner is that they are sending you to? i would guess it is an MRI scan or maybe a CT scan to assess how deep the bowel endo has invaded the bowel and where. Bowel endo is found in 3 locations. On the outside surface, on the inside surface and also inside the muscle walls. That last kind is the one that causes most problems as the bleeds have no where to escape and just like adenomyosis in the uterus wall, the muscle tissue swells up with the bleed and this can obstruct the movements of your poop. That kind usually requires a resection cut out.

    The inner and outer surface endo may not require a full resection and can usually be tackled a lot easier...but still can require a big hole laparotomy to get to it. Key hole doesn't give the surgeon much room to work on the bowel unfortunately.

    I would be surprised though if there is only one MRI scanner in Wales..more likely there is only 1 endo specialist colorectal surgeon in Wales.

    Here are some useful webs to read through:

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

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

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

    danmartinmd.com/rvendo.htm

    gyndr.com/endometriosis.php

    gynsurgery.org/topics/endom...

    gynsurgery.org/topics/endom...

    The endo centres in the UK are few and far between outside of London.

    bsge.org.uk/ec-BSGE-accredi... lists them all

    Bristol x 2 and The Wirral are the three closest to Wales.

  • I just wanted to thank you impatient for your post. I've just found out from a MRI that part of my pain is coming from endo on my bowel. I have excruciating pain. I'm waiting to hear if I have to have a section of my bowel removed or not. Do you know if this contributes to weight gain? X

  • The sergeon said its like a camera tube th goes inside :/ I'm not sure. That has made me feel better, thank you impatient. Fingers crossed it isn't as bad as the surgeon said.:/ thank you for your replies

  • Hi

    I think you maybe having an endo-anal scan. It's like an ultra sound of the inside of the bowel. I had one of these at a hospital in Cardiff in September and if its like that then it wasn't as bad as the squimoidoscopy (I had this in 2005 and felt like you). It shows if there's a 'plain' of something which means they can cut it out without too much damage to the bowel. The doctor who did this scan was lovely and very gentle so I hope you get the same doctor if its the scan I suspect I went straight back to work within an hour or so .... After the squidgy scan (not the official name but what I call it) I had a couple of days off work.

    Hope this reassures you and you don't have to wait too long for the scan

    Good luck

  • Rectal Endoscopic Ultrasonography = camera up the back passage.

    Or there is Trans-Rectal Ultrasound for endometriosis which is the same sort of thing as the Trans-vaginal Ultra Sound only in a different orifice

    Just googled them and there seem to be quite a number of recent articles on the benefits of using those scans for pre-colorectal endo surgery.

  • Thank you guys as soon as I know more ill post on here what it is called etc and see if they can give me more information to pass on

    So nice to have people to turn to

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