Laparoscopy and Diagnosis - any advice ap... - Endometriosis UK

Endometriosis UK

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Laparoscopy and Diagnosis - any advice appreciated

kharv
kharv

I'm completely torn about getting a laparoscopy after seeing a gynaecologist for the first time yesterday. My GP has been so lovely and supportive, adamant that there is an underlying problem (potentially endo) and we will get to the bottom of it.

I had an ultrasound which showed cysts on both ovaries and fluid possibly from a ruptured cyst in my pouch of douglas. However the gynae told me there was a 50% chance it is endo and we can try to treat the symptoms by getting the hormonal coil. Has this helped for anyone else? He seemed reluctant to put me forward for a laparoscopy but I have been put on a waiting list.

I know surgery has its risks but I've suffered with many of these symptoms for over 10 years now (I'm 26 and have had heavy painful periods since the age of 15 with other symptoms developing over time). I am currently feeling like the surgery is needed because for my peace of mind I need to know if I have endo or not, but the prospect of having surgery unnecessarily has me torn. Any advice would be appreciated.

6 Replies
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It is a difficult decision and ultimately only you can make it. but here are some pointers / advice / my experience which may help the process:

Ideally you want to be seen by an endometriosis specialist; they'll be able to spot and remove endo / any other problems and know where to look. A general gynae can often miss some of the less obvious places. Also an endo specialist will be able to excise the endo there and then including biopsies of anything else they need. General gynae may want to just take a look and get you to have a second lap to actually remove endo. Having everything done in one lap means you'll see the benefits after recovery.

You can check out a list of BSGE (endo accredited centers) near you and then call one up to see what their admission process is; have a chat with your GP to be referred to on as your GP seems to be on your side with it, which is rare so go with it.

A lap with excision can take a while to recover from - usually about a month from the surgery and then they say about 4 to 5 months to completely recover and see your new "normal". If considering removal of endo usually they say expect symptoms to be reduced by 50% at about the 6 month stage. My specialist doesn' suggest any hormones before or after lap as he wants to get in there, take a look and remove whatever's the problem so that his patients can just get on with their life, then at about 6 months see how things are going.

Hormones do work for some women, they did for me up to a point, they do help some to alleviate the symptoms, give yourself more time to decide or just be all that women needs. It however won't stop endo growth or for example cysts / fibroids as these all need oestrogen to grow which we all produce, so it'll keep growing but maybe slower. I don't mean to sound negative but your symptoms will only get worse in the future as endo grows thus possibly requiring more invasive surgery, which is the main reason I'd say if offered have your endo removed as soon as possible. Endo can stick organs together and if it grows in large enough patches it can perforate organs requiring further surgery / more invasive operations. I'm not meaning to scare you, just giving you the full picture. I feel that endo and other womens problems are so played down by doctors and kind of passed off so we need to push for diagnosis and treatment sooner so we don't suffer longer.

Considerations for hormones though is that they all have their own side effects and some of them can make your symptoms worse. Quite a few gynaes will suggest them and then say to come back in 6 to 9 months to see how things are (settling in period for hormone treatment), then they may look at surgery and even then it may be just diagnostic. Or they may say to try a different one, all the while you don't know what's happening inside. Surgery waiting times can be up to 9 months on the NHS so it's worth taking that into account with your symptoms and how you are at the moment.

I guess the main thing is if you want to know so you can start to learn and know what to do, how to cope and start reading up.

Some info which might help:

My story

healthunlocked.com/endometr...

Endometriosis UK website for diagnosis and treatment:

endometriosis-uk.org/gettin...

NICE guidelines on treatment paths for specialists, so you have an idea on what to do:

nice.org.uk/guidance/ng73

BSGE website of endometriosis centers:

bsge.org.uk/centre/

A few books off Amazon which I found really useful:

Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with Your Symptoms by Endometriosis UK Charity

Living Well with Endometriosis: What Your Doctor Doesn't Tell You by Kerry-Ann Morris

Happy to answer any questions, xx

kharv
kharv in reply to farahziya

Thank you so much for your reply, I really appreciate it as I haven't been able to communicate with anyone with a diagnosis of endometriosis.

Where I was seen is BSGE and the gynaecologist who I saw also runs an endometriosis clinic, so I do feel he has an understanding but he also seemed very on the fence in my case, telling me my chance of having endo is the same as flipping a coin and insinuating surgery could be for nothing. However after all these years of not knowing I would like to be able to either get a diagnosis or know I don't have it! The gynaecologist also didn't mention any excision if they found endometrial tissue, just looking for diagnosis, which I did think was a shame because that means if I am diagnosed I'm likely to have to undergo the procedure again.

I've definitely got a lot to consider but thank you for your reply and all the info you have provided, it's really helpful!! xxx

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My daughter had a lap surgery to check for Endo , it’s not bad at all, they only put two little holes to look through. Good luck

A laparoscopy does not have to involve removal of Endo tissue, even if there is some there.

Your first lap can just be a diagnostic investigation, just to see what is going on, and to find out if you need to be referred to a BSGE team.

The gynaes who do initial laparoscopies, are generally not as highly specialised as the ones who work in BSGE units. Therefore, it makes sense for a first lap to be 'just' an investigative and diagnostic operation; then if there is anything difficult, you 'should' be referred to a BSGE team. Unfortunately, a lot of women (and on this site!) seem to have the removal of endo tissue done during a first lap, without being referred ... and the endo just grows back, later, and is often worse. This is what happened to me, and it is still going on, now, over a decade later, to countless women.

You can insist on your first lap just being investigative, this should be noted in your report before the first surgery.

However, one of the areas that is most difficult for less specialist gynaes to deal with , is the 'pouch of douglas' ... so if you already know that you have problems in the p.o.d., then I would think that your GP can already refer you to a 'BSGE Centre'. There is an official protocol for your GP to follow - about referring women to a BSGE Centre - so I would go back to the GP and ask about this, to see if you can be referred to the higher specialists, straight away.

If this cannot be done, as yet, you still have the option of insisting on your initial laparoscopy just being an investigative and diagnostic one, so that you can then be passed on to a BSGE Centre.

Hope this makes sense, and helps.

Take care, Gritty.

It does not sound like surgery could be pointless. The symptoms definitely point in the endo direction, so it would be superficial NOT to get full excision.

I strongly recommend you turn to an extremely skilled and experienced endometriosis surgeon straight away instead of just getting a diagnostic laparoscopy.

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