Improvement after removal of endometriosi... - Endometriosis UK

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Improvement after removal of endometriosis????

ConfusedGirl profile image
4 Replies

Hi,

I am just wondering if anyone has had their Endo removed and it has helped with pain/symptoms?? i have been diagnosed with stage 1 endo, i have only had a diagnostic lap in which they found two small patches of endo but did not remove them as they were very small so wanted to put me on the pill first to try and controll it instead of removing it and creating more scar tissue..

so i just want to know if anyone has had endo removed and feels better for it??? x

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ConfusedGirl profile image
ConfusedGirl
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raine83 profile image
raine83

hi i had stage 4 endo and had to have a laparotomy done april last year i had so much surgery i was down for 4 hours and it has really helped me with pain im due to go bak to my gynae in april so he can check on me im just hoping it is going to help me concieve ive been trying for a baby for 6 years :( x

Impatient profile image
Impatient

I'm not surprised you are confusedgirl, I am too.

The ONLY way to get rid of endo it to surgically remove it, and if you only have a tiny patch I can't for the life of me think why they didn't cut it out there and then.

Yes there are risks of adhesions, but they are a risk simply for having had a lap op too, and endo itself causes adhesions if it is left in you.

Arghhhhhh

Not sure what kind of gynae surgeon you had but I seriously question their competancy when I read your post.

Removing endo where it can be removed is essential.

No it doesn't always solve all pain issues because it can already have damaged nerves and what this surgeon saw might not actually be all the endo that you do have, but if it was safe to remove, it should have been removed.

Not only that but a decent surgeon would have discussed the mirena coil with you before hand on the ofchance yo had endo, and used the lap op as an opportunity to install it correctly without causing you any additional pain and discomfort.

As it is, what's done is done. Next time you think you need endo surgery, please ask to see an endo specialist gynaecology surgeon.

Yes the Mirena coil can make a huge difference to pain levels, especially if they are mostly happening when you have a period or when you are ovulating.

It doesn't suit everyone, but there are more happy mirena coil ladies around than unhappy ones.

Personally speaking it has been fantastic for me and made a massive improvement in my pain levels, better still stopped all the faff with long heavy periods and wondering when I would come on, how heavy it would be from one day too the next, how long I would be on and so on. It has given me back my life again.

I would love to think every woman who has it has as good an experience as I do, but there are some who really struggle with it twinging tweeking causing pain and not actually stopping their periods, so on balance I would say give it a go, because it is worth trying when the benefits are so huge if it works for you.

Try and get it put in under anaesthetic, at the very least take strong painkillers before you have it put in. It shouldn't take too long to be installed and if you're happy with it, then you need to leave it in for 4-6 months to kick in properly, meanwhile having periods still, and then hopefully up to 4.5 years of no more periods and period pains when it gets going.

Really sorry your surgery was simply a look and see and not actually doing anything about the endo. It seems such a waste to me although at least you did get diagnosed.

lexharr profile image
lexharr

I agree with impatient, I had my diagnostic lap on Monday, they found small patches of endo and removed them and separated some adhesions (didn't explain what or where???) this in itself annoyed me as my gyne didn't explain reasons, treatments, follow up appointment or anything else that I could do. However I can at least say they removed what was there, I would have been furious if they had put me through such invasive surgery just to tell me they didn't treat it at the same time!

I know this is not what u asked but I would make a point of writing to someone, did they offer u a follow up appointment to discuss it? May I ask if you are at an age u are thinking of having children or may be in the future? By not removing it then, there may come a time when they have to do surgery again which not only will make u take more time off work to recover but cause even more scar tissue!

I'm sorry but this is bull and has really wound me up, I hope u get it sorted out and get a decent gyne soon.

Good luck. X

I had some endo scarring removed and had about a month or two pain free before it came back.

I hope you feel better soon xx

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