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Women's health

What Scan Do You Get For Endo?

19 replies

Lamont77 · 31/10/2021 09:51

Hi,

I have an extra session booked in at the hospital today for a scan for endo. Does anyone know if this would be a trasnvaginal scan, regular ultrasound, CT scan? My letter doesn't say.

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AttilaTheMeerkat · 31/10/2021 16:37

In my experience no internal scans (and I had a lot of those) detected the endometriosis present in my uterine cavity (because the deposits are that small). I was diagnosed via laparoscopic (keyhole) type surgery.

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Lamont77 · 31/10/2021 23:39

Thanks so much for your reply!

Interesting... today, the gynaecologist advised that I avoid a lap because all the treatments are hormonal for endo, so I might as well try the treatments and see if they stop my symptoms than put myself through surgery. He said he thinks it is endo and checked my womb via internal exam but no scan. Found it a bit odd tbh.

Anyway, I've been told to get two diff types of 'acid' pills (cant remember names) and the mirena coil.

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Hairyfriend · 31/10/2021 23:43

It obviously depends where the endo is???

An HSG or hycosy will show the uterine cavity shape and tube patency. This scan can show ovarian endo and some within the uterus.

Friend has endo on the outside of her bladder- so this was only seen on a lapascopic surgery- same if it was abdominal or anywhere outside the inside of the uterus.

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Hairyfriend · 31/10/2021 23:45

Sorry- clicked too soon. A camera in the bladder- cyctoscopy can show endo within the bladder. A hysteroscopy- camera within the uterus, can show it there.

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Lamont77 · 01/11/2021 07:24

Thanks for replying - I have symptoms of bladder and bowel endo too, as well as bleeding after sex.

His priority was to get me to stop having periods and see if I keep getting symptoms.

I mean, I feel like he fobbed me off a bit so I might go private if I need to and pain continues.

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Hop27 · 01/11/2021 10:48

Find a gynae that specialises in endo. Don't allow yourself to get fobbed off, a lap would diagnose it officially and cut out the endo out that is causing you pain, the coil will stop it growing again. Also a lap will diagnose Adeno too. Find another Dr, especially if you want children. GO PRIVATE.
Good luck @Lamont77, it's a hellish disease.

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Createdjustforthis · 01/11/2021 11:15

Mine was diagnosed via lap during a related gynocological surgery and was mapped using MRI. My surgeon isn’t keen on excision surgery as I have severe bowel endo and my uterus is stuck to the surrounding organs and tissues.

I’m currently considering prostap to stop my cycles altogether as the progesterone only pill isn’t working and the coil was really horrible.

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Lamont77 · 01/11/2021 11:23

Thanks for your replies - its an absolute minefield isn't it.

You're already battling pain and then you feel like you have to battle to be seen and taken seriously.

Thanks @hop27 💖 I'm planning on ttc this time next year after my wedding.

@Createdjustforthis sorry to hear about your experience with the coil. I'm thinking of taking the pill back to back too. Flowers

Is it true endo can shrink?

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JewelleryBox · 01/11/2021 11:31

Going against the grain here but having had multiple laps myself I wouldn’t necessarily recommend it if hormones treatment works first. The endo can grow on the scar tissue so having an op can lead to 6months+ of being pain free and then it just starting all over again.

Also, a specialist can pretty much tell if it’s endo from an internal scan of the endo is bad enough and the consultant is experienced enough. (For example if your bladder is stuck to your uterus then when you’re scanned they’ll see the bladder and uterus moving as one rather than free moving.)

Basically, I wouldn’t have a lap if the only reason for having the lap was to confirm a diagnosis. (As opposed to diagnosis + treatment.)

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ArchwizardTVampirebat · 01/11/2021 11:37

I had a trans-vaginal ultrasound - I had a large endometrioma on one of my ovaries.

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AttilaTheMeerkat · 01/11/2021 15:27

Internal ultrasound scans can indeed detect endometriomas but in my case no internal scan detected the endometriosis present in my uterine cavity because the deposits were so small.

Lamont - I would have long and detailed discussions about the Mirena before having one fitted. It tends to be offered because of its relatively cheap cost and if I recall correctly it is still not a licensed treatment for endometriosis. It seems that this man has also advised you to use mefenemic acid and tranexamic acid tablets (both are commonly given for endometriosis).

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Lamont77 · 01/11/2021 18:19

@AttilaTheMeerkat thanks for your reply. I'm dubious about the coil. Because I'm ttc next year (well, I plan to) I don't want to get it in for under a year when most people I know had 7 months worth of straight bleeding before it settled (different for everyone, I know, but still concerns me).

Yes, that's the names of the acids! I have already been taking mefenamic and it does take the edge off, but it seems to be having a weaker effect as time goes on. Never tried the other one, will see how I get on with that. Thanks!

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AttilaTheMeerkat · 01/11/2021 19:34

Tranexamic acid tablets were not effective for me.

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Maria1982 · 02/11/2021 12:46

Tranexamic acid helped reduce heaviness of periods for me.
I was told mefenamic acid for pain, tranexamic for heavy/excessive bleeding.

Much sympathy OP, it’s an absolute bugger and a nightmare having to fight for diagnosis… (I don’t have diagnosis… just many of the symptoms ….).

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Maria1982 · 02/11/2021 12:47

Also I hear you on not wanting to get cool if you are planning to TTC.

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PineappleCakes · 02/11/2021 13:00

@JewelleryBox
Basically, I wouldn’t have a lap if the only reason for having the lap was to confirm a diagnosis. (As opposed to diagnosis + treatment.)

I'm not sure I understand why you say no to a diagnostic laparoscopy? My DD is scheduled for one soon, but the doctor told her they wouldn't be cutting away anything, it's purely for diagnosis. We (daughter & I) don't really know why they wouldn't cut away endo if they find it...

Daughter had the doctor's appt by herself (she's 19) and had an ultrasound previously which didn't give her a definitive diagnosis.

Mef and tran acids did work for a while for my daughter, but the pain became too severe. She's currently on the pill and codeine (which she either takes to reduce the pain so that it's manageable, but then she's too "high" to be capable of doing anything... Sad)

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Maria1982 · 02/11/2021 13:01

coil sigh typos …

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JewelleryBox · 02/11/2021 14:30

@PineappleCakes two reasons:
Firstly:
If the purpose of the lap is only to diagnose and they find endo then it means having to go through a second lap to remove it.
It’s unnecessary to go through a whole other operation for most levels of endo as, unless it’s on her bladder/bowel, then the surgeon will be able to remove it at the same time as diagnose.

Secondly:
An operation causes scar tissue. Endo can grow on scar tissue. If she has two ops then that’s two sets of internal scar tissue whereas she could minimise this risk by having only one.

My (sadly now retired) consultant was excellent and he only ever did a diagnostic lap plus or minus removal. That means before the surgery you consent to them removing whatever endo they find, should they find any.

I have to add though: if they suspect the endo is on her bladder or bowel then they’re going to want to be cautious and diagnose first and then organise a separate surgery with the bowel/bladder specialists. But that doesn’t mean that they can’t remove endo is the less complex places they find it though (pouch of Douglas etc) and give her some more immediate relief from the pain while she goes back on the waiting list for the more complex surgery. But fingers crossed she won’t need that.

If they’re firm on only doing a diagnostic lap I would want an extremely good reason why. If you’re not happy, get a second opinion.

www.endometriosis-uk.org/ are also a great source of information and have a helpline etc.

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Lamont77 · 02/11/2021 22:04

Thanks @Maria1982 and sorry to hear you're suffering from these symptoms too Flowers

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