Negative lap, need advice please? - Endometriosis UK

Endometriosis UK
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Negative lap, need advice please?

1991A123
1991A123

I had a diagnostic lap yesterday with a general gynae. He said everything was completely normal. I am in shock because of the amount of pain that I am in and the symptoms I have.

My worst symptoms are pain with Deep intercourse, blood from anus when on period, thighs and leg pain. And very painful ovulation and periods.

Like I said I am totally baffled. I've just gone through my notes and there is no mention of him checking for endo on my bowels. Should he have checked my bowels? Or do you think it would be unlikely to be on my bowels if he didnt find any anywhere else?

He has told me to go back to the drs to get reffered to a bowel specialist.

Thanks

15 Replies
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This is exactly my situation. Every single symptom of endo, and severe daily pains. Laparoscopy showed nothing and I was told to check my bowels. I know it’s not my bowels.

Sorry to hear you're in the same situation, did a general gynae do your lap? Have you thought about your next step? I had my lap on Monday and I'm still in agony. I am devastated that I've put my body through this to no answers x

Yeah mine was a general gynae. Aw you poor thing, I found the gas was the worst part of it all. Once that subsided after maybe 4ish days it was a lot better. Have you tried peppermint oil capsules? That helped me a lot. I have no plan yet, I’m back to gynae at the end of the month to discuss next move. I’ve had a terrible time with the hospital, it’s taken 5years to get to this point, they keep loosing my file, urgh!!! X

That's awful, could you request a copy of your notes for safe keeping. I think the gas is all out of me it's just the pain of the incisions. I have already been discharged from my gynae so I'll prob go back to the drs in a few weeks. I really hope you get to the bottom of your pain, maybe we could speak again to see if we've made any progress xx

Absolutely! Il drop base with you after my appointment at the end of the month to let you know what direction they have sent me. Hope you feel much better really soon in the mean time! Xx

Hi Sunkissed, I was just wondering how you are feeling and if you have made any progress xxx

Hello, lovely to hear from you! Well I had an ultrasound in Feb. They couldn’t see much from the belly scan so they did an intravaginal scan. I’m told from my last med review with my doctor in April that it’s noted in my file they could see something from that, but of course I need to speak to gynae about it because it’s beyond my doctor, and with Covid malark I have no idea when that will be. I was very intrigued that it seems they could see more doing the intravaginal scan than they could do with the laparoscopy as I had no result from that. How are you? Have you had any progress? I hope you are managing to keep happy and healthy during these troubling times xx

Oh and I was discharged too after the negative lap. I went back to see my doc and asked to be re-referred again which is why i am going back to see gynae again this month. So we seem to be very much at parallel situations at this point! X

Hi, sorry you're feeling like this, I felt the exact same too after my negative lap. As frustrating as it was, I tried everything thr doctors suggested, just so I could go back to them with proof that I'd tried what said and it never made me any better. Took about a year and a half but I finally went back and told them I'd done everything and they have only just referred me back through to a specialist.

I know its incredibly frustrating not being listened to but if anything rules anything else out, it's worth a try! Best thing I did too was come off the pill for a break to see how that helped my symptoms (and took naproxen for period pain, absolute life saver!) and a lot of my symptoms vanished when I let my hormones settle. Might be worth looking into if you're on any form of contraception, I was only meant to be off 3 months and it's been 2 years now haha! x

Oh dear. You definately need to find out what's going on.

It may be an idea to go back to your GP and ask to be referred to an endo specialised consultant, they know what to look for and can check areas where endo can "hide" such as the bladder, and bowels. Their specialism allows them to have a look around these, general gynae may miss their areas simply because their training doesn't cover endo on the bladder and bowels also their specialism can mean they don't know the full structure of these organs so can't always examine everything, they'll look for endo on the uterus and ovaries specifically.

If you're not sure about the diagnosis path, check out NICE Endometriosis (google it) there's a detailed pathway that should be followed for correct diagnosis of endo, which may help you to push your case.

Also check out the BSGE website (google again) for a list of endo specialised centers; there may be one near you which your GP can refer you to.

The Endometriosis UK website has some good information on diagnosis too, perhaps check out that too. endometriosis-uk.org/inform...

You ideally want a lap with an endo specialist, to excise the endo they find as well as diagnose, then take biopsies of anything else they find. This means you'll have improved symptoms after that lap rather than a diagnostic and then waiting for another lap.

x

This was exactly my situation as well last month. I told them my pain was mostly my apendix area, and my bladded. Did they look? Nope, they did not.

I would demand to be refered to your nearest BSGE center by your GP - often the wait to be seen at these centers are longer, but the staff are more experienced.

Secondly, you can use the new GDPR legislation to get a copy of everything from the hospital free of charge. They are required to give you absoloutely everything they hold on you. Your NHS trust should have a website page where they will have forms you can download and fill in and send them. They will send you all your files, copies of all letters, copies of scans, xrays, surgery footage and photos etc. Will be invaluable for whoever you see next, also as a way of proving to a GP that you need to be seen by someone else.

You can't demand a referral to a BSGE centre as suggested. These centres represent tertiary care and there are referral criteria set by NHS England. The guidelines require that you are only seen by a gynaecologist in secondary care with a special interest in endo and not a general gynaecologist. It is very common for endo to be missed.

I run a UK endo guidance group which has an extensive library on all the guidelines, standards etc to help women get correct care. If you would like to join pm me. x

jess1981
jess1981 in reply to Lindle

I agree- my BSGE centre would only accept referrals with either proven severe endometriosis or complex endometriosis ( mine was on my bowel as well as POD & uterosacral ligaments) I was lucky my fertility specialist referred me. Guess I was lucky it wasn’t missed. xxx

For general info this is the treatment spec for BSGE centres in England which includes referral criteria:

england.nhs.uk/commissionin...

Pinkcupcake
Pinkcupcake in reply to Lindle

Thank you this is very helpful ☺️

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