Does endo come back

[Tboag]

Hi sorry ladies I'm abit confused, I'm trying hard to get my head around endo, but keep coming up against things I don't understand,

Endo isn't curable right..?

If we have it excised cut out, can it grow back,

I've just read that if excised properly it shouldn't grow back,

Please someone clear this up for me

Confused,

[confusedandworried]

Hi, I'm afraid endo isn't straight forward and there are very few straight forward answers to go with it either 😣.

There is no cure for it which isn't too surprising as they still do not know what causes it. There are several theories but all have flaws and limitations. Although it is widely accepted oestrogen plays a role in its development.

Whilst endo is unlikely to grow back if excised it can grow back in another area that wasn't excised, particularly given the fact oestrogen plays a role.

This in itself is not straightforward though in that the debate continues whether microscopic (or hidden) endo exists. It could be argued that if endo returns after excision it could be that microscopic endo (too small to be seen during surgery even with magnified viewing) was missed/not excised and therefore endo was not eradicated fully.

Furthermore, the level of skill of the surgeon could also play a vital role in successful excision. If it is not excised fully patients may continue to experience symptoms.

However even with a highly skilled surgeon(s) there a limitations. For example, endometriomas (aka chocolate cysts) on the ovaries can be drained and removed but a good surgeon trying to preserve the ovary will acknowledge they can only remove the cyst as much as possible for fear of harming the tissue and impacting upon the functioning of the ovary. Ovaries have health benefits to women so preservation where possible is important. However, in preserving the ovary with the excised endometrioma(s) there is a risk of endometriomas returning in the future.

Removing ovaries (and therefore you might think remove oestrogen) does not cure endo either as there are other areas within the body that continue to excrete oestrogen. Plus there is oestrogen in the foods we eat etc.

Furthermore, even with good excision statistics show relief from symptoms is approx. 5 years. That is not say some women don't benefit for longer or indeed less time.

And if there aren't enough ands, buts or maybe's so far - here's another! Surgeries, particular numerous surgeries, for endo can in themselves cause internal scar tissue which can,in turn, cause pain.

So the moral of the story:

1) limit the number of surgeries you may need by self-help as much as you can. Following the endo diet, a strict exercise regime, reducing stress where possible and taking naturopathic remedies prescribed by a naturopath who knew about endometriosis significantly reduced my symptoms so that it was manageable for a number of years, before which I was given the choice of hysterectomy or tramdol by a general gynaecologist!

2) if surgery is necessary, limit the need for numerous surgeries by doing your research and choosing a surgeon who uses excision surgery for this is the gold standard. Furthermore choose a surgeon who is on the BSGE's website as an accredited endo centre. These surgeons are supposed to be more skilled in the area of endo and as endo can come in different shapes and colours they should be able to recognise it where some general gynaecologists may not.

Sorry this is long and I fear I may of confused things for you further! But unfortunately there are no black and white answers when it comes to endo. Hopefully there will be one day.....

All the best.

[Tboag in reply to confusedandworried]

Thank you, you have confirmed what I alreadt thought was right, so my research must be going well,

A comment on here by an experience endo lady, to someone that had a lap and treatment a year ago, said that it shouldnt grow back if an experienced endo surgeon excised,

I didn't think it was the right info,mand now can't find the post,

Thanks again, I've got my lap on 21st for diagnosis and treatment if found.

[confusedandworried in reply to Tboag]

Hi, no worries.

She is right in so much as there can ever be a right answer!

Properly excised endo rarely, if ever, grows back in he same place. But unfortunately it doesn't stop it growing back elsewhere which could be due to new endo or microscopic endo that was missed in the first place.

I think the woman you are referring to may have been talking about peritoneal endo and total peritoneal excision that one surgeon in the UK undertakes. By removing the whole peritoneal lining endo shouldn't grow back there so removing this could significantly improve the success rate of eradicating endo in women where endo only affects the peritoneal lining.

However there is still the potential for endo to grow back in other areas not removed.

We as women are just too complicated!!! X

[Tboag]

Thank you so much, All makes sence now, I think lol.

[confusedandworried]

I'm not sure if it's less or more reassuring to say even endo specialists are still bamboozled by this horrid disease?!?! LOL or cry 😂😝!

[purpletigger in reply to confusedandworried]

often at the same time...works a treat!