Endometriosis UK

Just learnt I may have endo & being booked in for lap, any advice?

I have suffered from IBS for around 6/7 years and although have got that mostly under control through diet & exercise I have been having increasing pain and discomfort in lower abdominal, back and pelvic area and sex is pretty much a thing of the past, which is having a really bad knock on effect at home. Having finally ruled out anything else I have now been to a specialist and am being tested for endometriosis. I'm glad that things seem to be progressing to an answer, but am unsure what to expect from the procedure & then what the options are if the diagnosis is confirmed (or in some ways more importantly if it's not!) any advice would be really appreciated! Thanks!

2 Replies

IF there is no endo found - not the end of the story, there is a very similar, hidden disease called adenomyosis, works the same as endo, but can only be found hidden inside uterus muscle walls. There is some suggestion this same condition may also account for endo in the bowel muscle walls too, but primarily it will be the womb.

Bad news it hurts , great news is it can entirely be removed with hysterectomy when you are finished with the uterus for baby making.

adenomyosisadviceassociatio... is the website for all things adeno.

Usually the best way to check for adeno is having an MRI scan while you are on a period as bleeding within the muscle bruises in to lumps of trapped blood, and gives the muscle walls a bumpy appearance.

Ongoing treatment to stop periods can ease symptoms till you are ready for baby making - but once the baby making is done and you no longer need the uterus then it can be removed. but do definitely hang on to at least one working ovary if at all possible. There's no need to lose them just because the uterus is coming out.

Ovaries do so much more good than just being egg factories. the chemicals they produce help with bone strength and also protect your heart too. So they are worth keeping if at all possible.

Ovaries are unaffected by adeno. adeno doesn't spread willy nilly everywhere and i don't have it but i would imagine is actually more painful in some respects than endo due to the location of the bleeds.

if they do find endo - you could still have adeno - they are very similar but still quite separate conditions and while having both is rarer than one or the other, many ladies do have both.

Finding endo will normally mean at the 1st op, that it is attacked by laser or diathermy. this burns back the top layers of endo, it is usually enough to kill most of the surface shallow endo, and will do some good, however any patches of endo which have already grown deeper than that laser can burn, will remain active and may at the subsequent surgeries nees to be cut out (excised).This is a more time consuming job, and there could be hundreds and hundreds or endo lesions inside you, so 1st job with laser or diathermy will tackle the bulk of the more painful shallow endo.

Deeper endo has a tendancy to be less painful, but still hurts.

The 1st surgery is often all that is required for the majority of endo cases. There is still however quite a number of ladies who will need more extensive surgery later on.

The longer you have been suffering symptoms the more extensive and deeper growing the endo is likely to be and the more work you will need on it to be rid of existing endo.

that adeno website i gave the link for above has some excellent advice for planning for the hospital visit and how to prepare for home life after surgery so read through the hospital preparation pages - its doesn't all apply to you, but for the most part the advice is very helpful. best of Luck.

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Thanks so much for the response. This is all useful information, whether or not it'll end up applying to me or not I find it really helpful to know as much as I can just in case!

Thanks again, I'll check through that hospital info when I find out when I've got to go in.


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