Do I have to have the lap?: Hi I have been... - Endometriosis UK

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Do I have to have the lap?

Kat01
Kat01
13 Replies

Hi I have been diagnosed with endometriosis..I have not had a lap yet but had it booked and cancelled it...I had key hole surgery before to remove my gall bladder so I know how awful the op will be hence my hesitation to go through with it...I have read on here once you have on lap they just keep on coming is that true? I have many endo symptoms and have had the mirena coil fitted for a year now..when I went for an exam the gyn said that it was not positioned perfectly and while I was under for my lap he would replace the coil which again im pretty worried about doing...I don't like the idea of being asleep while they are poking around down there which im sure sounds ridiculous...my question is, how long can I put it off? Im 30 with 2 young children and I dont want to spend the next few years of their lives in and out of hospital having surgery! :-)?

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princessk09

Hey, I’m nervous about having a lap but I need it done for my career as the pain gets in the way of my life. I don’t like the fact they will be poking my insides whilst I’m asleep and not in control haha.

There is a chance endo can grow back after a lap but there’s also a chance it might not. But after they have removed it, your doctors will help find ways to prevent it coming back such as contraception pills etc. The only way to officially diagnose endo is through a lap though

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NW248

An MRI will show the extent of the endometriosis, it isn't clear if you've had one already. It should be done before a lap so that they know what they're dealing with as a lap might not be able to get to all the areas needed if it isn't done by an endo specialist. It is only the newer MRI machines that are able to see endo so many gynaes are still using a lap as the first option (which is worrying).

Endo can cause problems with internal organs so it needs to be treated. But you need to know how serious it is before you take that option.

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farahziya
farahziya
in reply to NW248

MRI funding under the NHS (UK) is being heavily stripped back so it's usually only used if in special clinics / centers / private - some centers may still have the funding as they budget for it; others just have to go with the flow.

My specialist went for a lap because he said it's one of those things you can do all the tests for but until you go in and have a look you have no idea what active endo there is and how much...plus some endo doesn't appear on the MRI due to positioning, it's density, your time of the month - it's clearer when you're on your period - all kinds of stuff

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Kat01
Kat01
in reply to NW248

I havent had an mri I had a ct to check my kidneys for stones but that came up with nothing but they said they wouldnt see endo with a ct so im not surprised nothing was mentioned then

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Starfish123

I’m puzzled by your comments re gallbladder op, I had mine out in 2014 and would prefer to have had that monthly rather than a period? The pain and discomfort was nothing in comparison, gallbladder being a 1 in pain compared to period being a 9.

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Hidden
Hidden
in reply to Starfish123

I think every body has different levels of pain and symptoms. I am sure it's natural for somebody who has struggled with a previous op to be nervous about another...

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Kat01
Kat01
in reply to Hidden

Yeah I really struggled with every element of it, going under was horrific and coming round, maybe tmi but I struggled to go number 2 for 2 weeks and required help there and just felt awful

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Hidden
Hidden
in reply to Kat01

I'm sorry you had such a bad time. I'm hoping to have a lap so any info for me is great. I kinda want be prepared for the worst... So I really appreciate people sharing their experiences on this page. That's the beauty of this site, we are all very different, experiencing different symptoms and levels of pain, and treatment etc. Can't find anyone that relates to you in the real world, but it seems easy on here xxx

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lizzyxx

I've had my gallbladder removed and I've also had a diagnostic lap to look for ectopic so I can tell you that you shouldn't compare them to each other as removing a gallbladder is much worse than what a diagnostic lap is, yes it isn't pleasant but no operation is. Just try to think of the bigger picture, getting the lap will hopefully benefit you in the future x

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farahziya

The lap is the only formal diagnosis for endo, everything else can suggest it but that's whats needed if you want to have it on record and be able to relate it to your symptoms from a work / education point of view.

You can have a diagnostic lap where they check for endo and any other similar problems, no work is done. Or you can have a diagnostic with removal of endo which means you'll have some relief from symptoms. Unfortunately endo doesn't go so whatever you do - surgery or hormone treatment it will always be there. Hormone treatment can hibernate it, thus helping the symptoms until you decide what you want to do but when you come off them all the symptoms will come back. Hence most women eventually seek the removal of endo surgery - endo grows and then the patches can produce their own hormones so they self grow when they get severe enough. If you remove it, it does come back but the rate it does is different for different women, some have a lot of relief some don't feel much so it's a personal and medical decision. Sometimes a lap can be a starting point as it is for me; I had mine diagnosed and excised in one lap; I'll need another lap as they couldn't remove a bit on the bowel without a bowel surgeon - they didn't know the extent of it until they had a look. I had severe endo on my bladder, uterus and bowel, with them all sticking together. It's given me the time to get used to my diagnosis and what it means to me then working out what my symptoms are now they've improved - they're cyclical around my period so I can manage them easier now and prepare. Before it was just horrible all the time. My specialist says he hears from 50% of the women he's excised endo from with symptoms back, worth checking up in 2 years, then 50% of those requiring further surgery 3 to 5 years after the first, so that's good. But that's just his records; he suggests surgery as it removes it hence reducing it's growth, his view is hormones just put it at bay for a bit and delay the inevitable when you come off them. I'm prepared for it to come back but at the moment I'll enjoy life and treasure the good moments when I feel amazing :)

It would be good to have a read up on the endometriosis-uk.org/ website that details everything that happens including surgery. You can look up what happens during a lap; we can help you too with the details; some women prefer not to know. I asked mine before what they would do and after; I like to know!

Whatever decision you choose it's up to you; keep taking to us xx

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Curly22

Hello Kat,

i sympathesise with your worry. I really think everyone differs, sometimes the lap works and for others it doesn't seem to work as well. I was lucky, in my experience i had my first at 17 and last one last year at 39 ( 4 altogether) but my symptoms improved so much after each one that i kept having the ops done. I don't have children though so it is different for me.

I wish you all the best in whatever you decide, i'm sure you've spoken to your doctor but maybe have another chat about things to reasssure you?

All the very best

xxxx

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Rai78

Hi Kat,

I had a laparoscopy about 8 weeks ago and the improvement is astounding. I went from three months of daily paracetamol, ibuprofen and codine plus the final six weeks with tramadol to needing pain killers maybe four days when ovulating.

I've since had a mirena coil fitted. If I could be asleep while they fitted it I'd definitely choose that.

While the laparoscopy may not be a cure all I would definitely recommend having it done. It took a few weeks to feel totally healed but as I said the improvement was incredible. I'd have it done ten times over to avoid the pain, discomfort, fatigue and depression the endo caused.

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Kat01

Thanks ladies this has all been very comforting I will phone and have a chat with my doc again and let you know in due course how I get on x

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