Collapsed bowel since lap and adenomyosis HELP

Hi

Just looking for some advice. I had endo removed by excision in march that covered everywhere but ovaries and fallopian tubes.

Anyway I've not been good since and been having awful bowel spasms where I've nearly ended up in a&e till the morphine, tramadol and codine kick in. Mri results come back and part of my bowel has collapsed since my surgery, I had lots of endo removed from bowel. I'm being referred urgently to gastro. my fab gynae consultant has left to go and work at another trust now and the new gynae couldn't really tell me much as she isnt a gastro doctor. So I'm wondering if anyone else has had this happen to them?

Also I have adenomyosis is 2 parts of muscle of womb. I'm 31 in a long term relationship but no children and the info I've found on this is that the only cure is total hysterectomy?? Has anyone got this and managed to have children? The info I've read about it seems to say if you do get pregnant it's a high risk pregnancy and can have life threatening complications for you and the baby?? My heads all over the show at the mo.

One good thing is all my endo has gone since surgery, apart from a bit of scarring and little endo left on bowel that they couldn't get to.

Any advice would be great. I've been diagnosed with severe endo, interstitial cystitis, collapsed bowel and adenomyosis

8 Replies

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  • Anyone any help with this please?

  • Hello, sorry your suffering, ive had a hysterectomy for adenomyosis, now I have no idea how long I have had this, but have had very painfull periods and back and hip pain for years, and I have 3 children, my youngest is 10 so I can't say that I had it whilst pregnant, but there is lots of ladies that go on to have children after diagnosis,

    I also have ENdo, and am due to see a specialist in a bsge centre shortly, as I had some excision work, but still suffering with pains, and symptoms,

    Good luck and I hope you get some answers soon

    Xxx

  • Thanks for your reply hun. I was a bit shocked when I read all the problems about the adenomyosis like it can have life threatening complications for yourself and the baby. It's scared me loads but then I think if I hadn't of had the mri scan I would not of known I had this so I would of tried to get pregnant anyway. Wish they hadn't told me I had it but it explains the pain I'm in. I have severe pain daily but then most days I get the awful period pains but I'm not even due on its so confusing. Is that how it made you feel? I'm confused about what problem is causing which pain. Wish they could do a lower abdomen transplant haha.

    Did a hysterectomy help you hun? Thanks for info. Think I just need some stories that people with adenomyosis have managed to conceive without life threatening complications.

    When did you have your excision surgery? Mine was in March and I've not felt any better still I'm huge amounts of pain but I'm guessing the collapsed bowel might have something to do with it xx

  • Well I have diagnosic lap in April with removal of endo and diagnosed Adeno too, not a lot of change after that, and then had the hysterectomy 13 weeks ago, feel loads better but still got pains and symptoms just not as servere, I'm now being reffered to endo specialist,

    I was in terrible pain, only got a few mild days every 3.3 weeks.

  • Sounds like you are going through a lot hun. So annoying having the surgery and thinking you'll feel better but you don't. Do you think you could still be recovering from the hysterectomy? If you can keep me posted on how you are. I wouldn't have a hysterectomy if girls with adenomyosis and Endo don't feel better afterwards so please keep me posted how you are doing hun. I hope you start to feel better soon xx

  • If you have all the endo removed and a hysterectomy, you would feel better, weather the endo would come back no one knows, it also depends what desease is causing the symptoms, which again no one could know, cause they are so similar, I think 70% of my symtoms have gone with the hysterectomy, but unfortunately not 100%

    Xx

  • Sorry I have no helpful advice, or encouraging story but I wanted you to know how sorry I am to read that you are having such a rough time. My consultant said that opiates make spasms worse but how on earth they expect anyone to manage on over the counter ibuprofen and the like is beyond me. Really feel for you, I have had children, but can't imagine how you feel, i'm sure there must be some positive stories from ladies on here. All the very best xx

  • Aww thanks for your reply hun. I'm my own worse enemy at times researching stuff on the Internet. I'm scared to even think about getting pregnant now after what I've read. I'm sure some women must conceive without even knowing they have adenomyosis. Suppose what's meant to be will be hun.

    I think the pain killers can make the spasms worse too but once I get plenty in me they usually kick in I couldn't live without them either, over the counter pain relief just wouldn't touch it anymore . I'm 31 feeling about 91 clinging on to some kind of normality by getting up and going to work 4 days a week on very limited hours but if rather do a bit then nothing at all.

    Take care xx

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