Can endometriosis just 'disappear'?

(Previously posted on the Yuko board) I was diagnosed with endo 12 years ago following a laparoscopy (although received no treatment - long story about health system failings!) Things have been a lot worse for me in the last 2 years or so, especially during the last 6-8 months so I saw a endo specialist. On Thursday last week I had another lap and the specialist (who hasn't seen me yet) wrote on my notes 'No endo' 'No gynae cause for pain'. He's the specialist for my city in the UK and apparently very well regarded, but I feel completely confused.

I was told that endo didn't just disappear and it certainly doesn't feel that way. All of my symptoms fit with the typical and atypical symptoms of endo, but I've been left with no explanation for my pain.

On doing some research today, I came across Camran Nezhat's website which states it can be hard to diagnose because sometimes endo is 'clear' in colour and 'flat'. I've been told by a gynae consultant that my surgeon is very well regarded but I feel very confused by the whole thing.

Has anyone else had their endometriosis diagnosis changed? Has anyone else experienced this? What do you say to the idea that it might be clear i.e hard to see

I'm finding this whole thing incredibly hard. I'm in a lot of pain post-op and AF is about to begin so I know it's going to get worse. I'm at my wits end and feel completely lost. Can anyone identify with this situation?

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  • There is another possibility, which doesn't show up in a lap op.

    That is adenomyosis.

    It's very similar to endo, but rarer and it forms in the lining walls of the uterus . It doesn't show on the surface like endo does as it is deep inside muscle. It cannot be seen during a lap inspection. The only way to be rid of adenomyoisis is ....hysterectomy.

    Which is not the case for endo.

    And it can give all the symptoms of endo pains, heavy periods etc

    There is a website for adeno as it is called for short.

    adenomyosisadviceassociatio...

    It differs from endo, as it only grows inside the uterus muscles, whereas endo is a surface beast that grows on anything. Endo is flat, that is correct, but I've not come across clear endo, there are differences in colour but I've never heard it called clear before.

    Endo bleeds so it ought to have blood vessels and be red or pink or dark brown or any shade of blood.

    Endo that grows down in to the walls of other organs is more 3D but it still appears flat on the surface. The only time endo takes on a more lumpy appearance is when you have endometrioma cysts which are spherical -ish and fill with old blood and can grow to rather large sizes. They are very obvious with scans as well as visually seen during surgery.

    The scar tissue that grows up from areas damaged by endo is 3dimensional and grows in weird shapes and sticks to whatever is near by and keeps on growing till it glues things together with sticky strands of adhesion. Endo patches can get buried under adhesions.

    Adhesions are clear but mature ones will develop their own network of blood vessels which can be seen through the sticky clear stuff.

    anyhow do check out the adeno website.... it might be what you are looking for.

  • Thank you for such a detailed response. It was really nice of you to put so much information together for me.

    My consultant ruled out adenomyosis, following several transvaginal ultrasounds as my uterus is not enlarged or misshapen. The symptoms, whilst a pretty close match are don't fit my symptoms as well as endometriosis symptoms.

    I'm only a week away from my appointment with my surgeon (who went on holiday immediately after my surgery, leaving me with no information other than my notes) so I guess I'll just have to wait and see what he says.

    Just wondered if any other endometriosis sufferers had been diagnosed via lap and then later told there was nothing there.

    Thanks again!

  • Hey, I know your post is a bit dated but can I ask how you got on? Our situations are very similar and I don't know what to do. I was told that I now don't have endometriosis but I can't believe it could just disappear.

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