After all this maybe crohans

Hi ladies

I had an abomial hysterectomy in dec for stage 4 endo. I wish in hosp 2 weeks. After a month am back with terrible pain and the usual bowel pain etc my consultant says its not endo .

Referred to pain clinic. Gp sending meFor colonoscopy as they think its a IBD like crohans or coltis. I have often wonder if there was another problem as everything was put down to endo. Am gutted as i thought i would be feeling really well by now. I had 4 surgeries over the years for endo. Has this happened to anyone else.

Lou xxx

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  • I'm in the same boat! Only found out a year and half ago that I had stage 4 endo. I had bowel, bladder, gynea symptoms! But for years prior I had random pain during the night for no reason. I would wake up in agony, roll round, pass out, throw up! It never correlated with anything, period, ovulation, nothing. But by morning it would go until I got a wall a year and a half ago. I was first diagnosed with unknown PID, then at lap was changed to stage 4 endo. I had surgery back in December to remove my damaged fallopian tube from round my bowel, remove adhesions, cyst, endo from all over! But after surgery I got worse, to the point I stopped pooing which was made out to be constipation. Lax and suppositories later, still no better .. passing mucous, blood and something that resembled white tissue. Then drs decided it wasn't constipation. I bloat that big it affects my lungs, I'm in pain, fatigued, feel constantly sick. I've tried changing my diet, forcing myself to be active. Anyway I too have been sent to a gastro guy. I have read IBD can actually be secondary to endo and there's an increased risk. Oh and I'm weeing more and awoken needing a wee during night! I was gutted, cuz I thought the surgery was going to fix everything, but it had in fact made it worse!

    Good luck on your journey xx

  • Hi thanjs for your reply. yes thats exactly the same. Now i have been referred to bowel surgeon

    But it has been Red Flag so am now worried as that is for cancer. Although i dont think i have it as i have been like this for years. Its just horrible.

    Take care

  • I too am down as urgent. My uncle died from colon cancer, my dad had oesophageal cancer, so 2 separate digestive cancers, but I'm too am not convinced. I see my specialist a week today to get to bottom of it! Hope it isn't cancer and yours isn't too .. I'm same as you, been going on a whole too, so like you I don't think cancer! But it's definitely got progressively worse xx

  • And I do understand the devastation .. My first lap lasted 5 mins .. I was such a mess that they opened me up and shut me before they did no damage and as it was at a private hospital, referred me back to NHS under priority surgery, which I actually waited 12 months for! I thought great. The light at the end of a very long tunnel! I was going to be 'cured' and now I'm like it wasn't endo causing all my problems all along. Best bit about it, because I had bowel involvement I was under a colon surgeon, who didn't properly investigate my bowel symptoms and went in blind with my gynea surgeon, because theyd knew id waited too long anyway for what should've been 'priority' surgery. I waited 12 months from diagnostic lap to treatment. Xx

  • All they had to go on was an out of data ultrasound and a short letter from my first surgeon outling that I had severe endo and needed priority surgery. I should've received a colonoscopy/mri and other tests before my final surgery and I got nothing! Now I feel like I want through major surgery for nothing which had complications of its own! I feel let down tbh that no one was listening. I was admitted to hospital 3 days prior to my surgery with bowel pain. They suspected appendicitis but then blamed my endo, even though it wasn't the time of the month! Xx

  • I know its devastating all that we go through. I had 3 laps the third i was very ill and was ruzhed back to threatre 4 days later had hematoma need blood tranfusion. Then in dec there had open surgery a bowel surgeon was present but only for the endo i was very ill again with kidney problem was in 2 weeks but thought it would be worth it when i was on my feet again. Its like going backwards instead of forwards. Seeing a bowel surgeon next thurs through private health. Please god all will well and not to serious. Goodluck and take care

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