Could they have missed endo? Please help

Hi everyone so as you can see from my last post I had my lap yesterday but nothing was found. I'm still convinced they missed something Iv been told so many times by so many docotrs it sounds like I have endo. They didn't check my kidneys in my lap do you think possibly my endo could be there? Do the specialtst centres cost? I can't stop worrying I no I should be greatful no endo was found but I really need answers :(

Thanks everyone xx

7 Replies

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  • OK. First things first. You'll still recovering from the surgery and in shock - please be kind to yourself. x.

    A referral to a bsge specialist is free and you can see one on the NHS. Your GP can refer you. It might help to have a look online and find a centre you want to go to, as not all GP's know as much about these centres as they should.

    Can I ask what else you've been tested for - have you had for example colonoscopy and bowel tests?

  • Thank you so much, yes I forget my surgery was only yesterday I think Iv been doing to much already as I keep thinking well they didn't find anything so Iv been trying to do more things than I probably should be doing the day after surgery. I haven't had any other tests to do with my bowels no. There has been some conflict between doctors as to wheter I have scarring on my kidneys which made me wonder if that could be endo? But no I haven't had any other tests. Thank you so much for your reply it's so helpful and reassuring to hear from other people and makes me feel a little better xx

  • If I were you, once you're properly recovered from the endo, I would go back to the GP and ask them to start working through a more comprehensive list of tests. They can rule out a lot of bowel conditions like coeliacs and colitis with a blood test, so that's easy and straightforward. If you have IBS type symptoms or rectal bleeding (which you can get with endo) then they should send you for a sigmoidoscopy/colonoscopy to help rule out other bowel conditions. You should also be able to have a look at your surgical notes to see exactly where they looked and what was seen. They should have taken photographs during the lap which you can look at. Adenomyosis causes endo symptoms but isn't always easy to see. It could also be endo in some of the more tricky places, like rectovaginal endo. Obviously it might be something else, but if your symptoms strongly suggest endo then a second opinion is warranted.

    I assume you've had pelvic ultrasound? Is this where the suggestion of kidney scarring came from?

  • Thank you so much I will do that. When I get my surgical notes I will be looking through them hoping there's som advice. Yes I had an ultra sound which shows the scarring. Thank you so much for your help and advice xx

  • It's so frustrating not having a diagnosis.

    Just because they didn't find endo doesn't mean you definitely don't have it - my surgeon even told me this pre op. Do you know if your surgeon took a tissue sample to test? Endo can be hard to see. It could also be that it's in a location that's hard to see.

    I would concentrate on your recovery first. Although it's annoying not having answers you need to look after yourself while you recover from surgery.

    Once you're back on your feet you need to go back to your doctor to try and get answers - which unfortunately you might need to push for. Your symptoms are real and they need to find the cause of them so you can get treatment. You might also want to consider getting a second opinion regarding endo.

    All the best with your recover and I hope you get a diagnosis soon.

    Ella_x

    Blog: ellasendo.com

  • Lots of good advice. Hugs and first and foremost rest up, no lap is a small deal you need to be gentle with yourself and give your body time to recover. A BSGE referral and a methodical elimination approach sounds like a good plan to adopt... kidney scarring is something in its own right to follow up on too. Lots of hugs.

  • Thank you so much everyone for your help and advice I feel a little better hearing that it's not in my head and I just need to recover from my lap. I really appreciate everyone taking the time to help me thank you xx

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