Finally Getting Lap (but been told it wil... - Endometriosis UK

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Finally Getting Lap (but been told it will show nothing but IBS!)

KM1986 profile image
14 Replies

Hi everyone! Well I'm finally getting my diagnostic lap done next week. My gynecologist seems very doubtful as to whether anything will show though as so far, they've not seen anything on an ultra sound scan. Just wondered if anyone else has had clear ultra sound scans, but then been diagnosed with endo? She also said that even if I do have it, it might be so small, she might not can see it. All in all, it doesn't sound very hopeful to be honest? Just wondered if anyone else had similar?xxx

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KM1986
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Daisy19 profile image
Daisy19

I have had clear ultrasounds (more than one, by different specialist endo gyns), nothing was ever felt during exams either, and 2 weeks after the last clear ultrasound a diagnostic lap showed a stage IV endo (frozen pelvis).

I am still beating myself up for not insisting on having that lap done years earlier - by the time the endo was found the adhesions, scars etc were all over, endo invading bowel wall etc. Did have complete excision surgery during second lap, but no follow-up hormonal treatment afterwards (also beating myself up over not insisting on that), so no success story here.

Sorry I can't be more positive. Hope things will work out for you though!

KM1986 profile image
KM1986

My goodness daisy19 that's awful. They keep telling me that things would show on an ultrasound. You have just proved what I suspected. Hopefully you're doing better now xx

Daisy19 profile image
Daisy19

Thanks KM1986! I did not mention that this was about 12 - 13 years ago and ultrasounds may have become more reliable. I think MRI is more sensitive to show endo, but it isn't used much for endo here (the Netherlands) because it is much more expensive. I don't want to get on my soap box, but if endo were a disease that men could get, cost would not be an issue, I'm sure!

But all in all it's good that you're getting the diagnostic lap, you will hopefully know more after it. Although even a lap does not always show everything (microscopic patches can't be seen).

KM1986 profile image
KM1986

Yes my gyne did mention that possibility as well. It's good that I'm getting one but worries me she's so sceptical xx

Tired123 profile image
Tired123

Hi I had two scans swabs and bloods taken lots over the years and the first gyne I saw told me I had IBS and no gynocoligical problems. I asked for a second opinion and finally got lap after years of pain. But I was told before op that they prob wouldn't find anything. They did ! Endometriosis! So try not to worry cos even if they don't find anything it's good way to rule out lots of other problems. Good luck and I hope your lap brings you some answers X ps sorry I didn't say my scans came back clear only showed small fybriod on second scan.

Billiebear19 profile image
Billiebear19

I also had clear ultrasounds a few times then I had a lap and they found it also I had a recent scan and during it I asked her if the endo was there she said it was clear but I have endo so dont feel discoraged by your scans zx

KM1986 profile image
KM1986

Thank u all soo much. I'm thinking positive now whatever the result but it's all thanks to you lovely ladies xx

GrittyReads profile image
GrittyReads

This makes me so mad! I was told all along that endo does not show up on Ultrasound scans. My understanding is that ultasounds are only done before laps as a precaution to look for, or, to rule out other conditions: ovarian cancer, other cancers, fibroids, PCOS, etc, etc. When I saw (privately) the wonderful gynaecologist (one of the leaders in his field, sadly now retired, even from private practice) who finally listened to me and arranged for me to have a mirena fitted under anaesthetic, he repeated this point about ultrasounds. Plus, he was very scathing about GPs etc who keep telling people that they've just (?!) got ibs. He said that many ibs symptoms are caused by the endo. My endo was fairly mild, and when on the pill, and since having a mirena, I don't have endo agonies, but neither do I have ibs type symptoms. Even my local lovely radiologist, will remind me about how the ultrasound she's doing will not show endo or adhesions.

KM1986 profile image
KM1986

It's amazing how wrong some docs get it. Will have to see what happens on Tuesday but it could be interesting. When I first had an ultrasound they told me that nothing showed up, yet when the gyne did an internal scan they found pcos and it was supposedly a severe case. Makes you want to give up lol xx

magnetta profile image
magnetta

Both my sonographer and my gynae told me that it is impossible to diagnose endo with ultrasound. I am having an internal ultrasound to check for cysts. She had if that is clear, like she expects, they will give me a lap as she is sure I have endo x

KM1986 profile image
KM1986

That is exactly the same as me magnetta. I'm just worried they don't find anything and I look like a fraud! It's awful feeling like you want to have this awful disease just to have an explanation xx

Danii profile image
Danii

Hi Hun,

What they are telling you is completely unprofessional, the ONLY sure fire way to diagnose endo is through a laparoscopy as it is very common for scans to be clear (mine all were) also the size of endo does not directly relate to the symptoms it causes e.g. lots of endo-minimal pain/minimal endo-lots of pain.

Regardless of size of endo or indeed any result from the op you deserve to know what is wrong and like wise have other problems ruled out. Unfortunately there are many staff who are ignorant to the effects of Endo and/or the symptoms, keep fighting for your own body and don't be disheartened by anyone else's supposed view in to the future of what you may or may not have. xxx

anneliives profile image
anneliives

I had cysts shown on my ultrasound but my gyno wanted to do a lap regardless of the outcome of the ultrasound. Good luck xxx

Parksie7 profile image
Parksie7

Hi

As others have said, an ultrasound cannot diagnose endo. Shocking attitude, but perhaps the gynae is trying to set your expectations? In that it is diagnostic, so you may not get a definitive diagnosis of endo from it?

I had a lap on Tuesday past, and my gynae really explained that it was diagnostic and that a negative result was still ruling things out and getting closer to an answer for me (clearly, my gynae is a bit more tactful than yours!).

My gynae removed a large cyst that apparently wasn't on my scan, so they can surely 'miss' endo.

Take care and good luck.

Lx

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