First Lap: Hi everyone, First post on here... - Endometriosis UK

Endometriosis UK
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First Lap

KTraynor
KTraynor

Hi everyone,

First post on here :)

I had my first exploratory laparoscopy yesterday - home now and very sore!

I’m not sure whether to be pleased or not, but nothing was found on the lap. I originally went to my GP in April last year with horrendous period pain (only started getting pain 2 years ago) and really heavy flow. I was put on the pill and I stuck it out for 3 months or so but was having a period every week and I couldn’t handle it any more. My periods are still horrendously painful, heavy, my lower back is extremely painful, my legs feel heavy and numb and almost like I’ve done leg day at the gym for a week and pulled all my muscles. If I’m unlucky enough for it to fall in the week, I can’t go to work. I feel bloated a lot. Sitting, lying down, walking around - nowhere is comfortable.

I’ve been referred back to my GP after the lap and I just don’t know where it’ll go from here. I was lucky and originally referred quickly and to a private hospital so I’m grateful but I was sure they’d have some idea on what was going on.

I’ve read a lot of people have had to have 2-3 laps before docs found endo.

I wondered if anyone else had the same experience and had another diagnosis after being told it isn’t endo?

Sorry for the long post!

3 Replies
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Oh no :(

Quite often endo can be missed by a general gynae consultant, that's usually why most women need to have a second lap as they've worked out they need to see an endo specialist.

Your surgeon should have made notes and taken photos which he / she can send to your GP, they usually send a summary through anyway detailing what to suggest next.

I had my diagnostic and excision of endo plus biopsies all in one lap. My surgeon specialises in endo, heavy periods, laparoscopic excision, post menopausal problems, fertility, and had a pretty good idea it would be endo from the first time I talked to him.

If you definitely still want to go down the route of finding out what's wrong, look into clinics / specialists in your area. I'm sure you've done a lot of research already. The BSGE website is a good start as it has a list of centers it recognises. including surgeons listed under it. If you do a google for mine Mr Philip Kaloo it'll show you what you should be looking for.

Sometimes if the investigative lap lists "look for endometriosis" the surgeon may not look for other things such as cysts or adhesions, or if they do it may be in your GP notes.

You say it's a private hospital so if you're under the care of a private specialist you should have a follow up appointment at 2 weeks to discuss results and what to do next. If you're not under a specialist then I'm not sure what happens. I guess you could contact the hospital / secretary and ask them what to do next.

Not sure if I've helped! x

I would second what farahziya said. I personally had my endometriosis missed in a lap with a general gynecologist about 8 years ago. If I'd known more about the symptoms and what it could be I'd have pushed more then. Last year on top of all the other symptoms I got the heavy leg like I'd been to the gym feeling you are describing. I saw a private specialist and had another opp. I had deep infiltrating endometriosis in my uterosacral ligament. But I've nothing on my womb and ovaries which I guess was all that was checked before. Can you get a list of the areas checked during surgery? That might be a good place to start.

Thank you both!

I have checked out the BSGE website and it looks like there's only a specialist nurse at my local hospital. Could be a start. I'm going back to my GP who originally did my referral on Monday - she was lovely, so I'll see if she has any suggestions on what to do/where to go next. Also see if she can make out what he's written on the surgical notes because I don't have a clue!

My surgeon said he doesn't need to see me again. He gave me a copy of his surgical notes to pass on to my GP and he'll be writing a more detailed account of them in a letter to be sent directly to them, but that's it. I won't be seeing him again.

I had a quick look at the pictures that were taken in the op (weird, but I think it's interesting) and all I could see were normal looking (to me, but what do I know?!) ovaries, womb and cervix, I think. Oh and one of my liver?! A few years ago I had a small liver issue and I think he wanted to put my pain down to that - which it could be - but it seems unlikely.

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