Colonoscopy for endo?: Hi everyone, I... - Endometriosis UK

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Colonoscopy for endo?

Telli686 profile image
14 Replies

Hi everyone, I recently got booked up for a colonoscopy in a few weeks as I was too scared to go full on laparoscopy first and thought I'd try something less invasive first, but now I'm wondering if I'm wasting my time ? Will they even find endo through this or is it pointless? I only suggested it to my doc because of all the bowel symptoms that I suffer with, but I've heard that it's rare a colonoscopy will actually show endo if you have it? Also anyone had experience with one as I'm freaking out and want to cancel but don't want to look like the girl who asks for diagnostic stuff and backs out every time ors they won't take my pain seriously (not that they do anyway!) thanks xx

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Telli686
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NW248 profile image
NW248

A colonoscopy is very unlikely to show endo. I had endo around my sigmoid colon and the colon was stuck to my abdominal wall with it. But the colonoscopy didn't detect it. I was told by the person that did the colonoscopy that my constipation was due to me having a bad diet, without asking one single question about my diet!. As the endo restricted the sigmoid colon and stopped the colon moving at all, it made the procedure horrifically painful.

So cancel it!

An MRI is the best way to detect endometriosis, but because it is only the newer machines that can detect this, only in the last few years, the GPs and gynaes haven't caught up with this and still want to do laps. Also, your GP can refer you for a colonoscopy but not an MRI, that has to be a consultant.

weekari profile image
weekari in reply to NW248

Sorry to jump in here, I'm just really interested in you saying an mri is the best way to detect endo. I had a lap 2 years ago but no endo found. I then had an mri through an orthopaedics referral and have just been told severe endo was found. I've been so thrown by this. I didn't realise mri was more accurate. That's really interesting to know. People should really be digging for this instead of having surgery!

Telli686 profile image
Telli686 in reply to weekari

This is very interesting, now when you say MRI, is it a specific type? Because the MRI showed nothing for me but I'd put good money on me having endo? Is it possible I had a wrong type of MRI if there's even such thing as different types ? Thank you! Xxx

weekari profile image
weekari in reply to Telli686

I'm not sure about the type of mri. I think it was just a standard mri. It was too look at my joints as they suspected I had arthritis on my iliac joint but my joints were all clear and they saw all the endo. I don't know if that's because my endo is particularly bad or deep but they certainly weren't looking for endo. I'm still waiting to find out more info as the orthopaedic consultant didn't know anything.

justfortoday1 profile image
justfortoday1

Heya. I understand your fear, and ultimately, you will decide. My experience has taught me that I must treat endo as a journey and make notes on what works an what doesn’t.

So I would say, in terms of the colonoscopy, go for it. It might reveal that the endo has not penetrated the bowel, or it might show some pushing like it did for me (there was pushing on the rectum) or whatever...

And you can place whatever info you get into your endo puzzle until you get a picture that allows you to manage it.

I think you are being brave for just seeing your doctor and taking an active part in your journey. Don’t be so hard on yourself. It’s ok to be scared. Terrified even.

Whatever you decide to do, MRI, colonoscopy, laparoscopy, just keep moving!

Hazeybabes profile image
Hazeybabes

I had a colonoscopy as had low iron and bowel symptoms related to the endo, think it was to rule out anything bowel related. All it showed was that there was no pentetration of the bowel from the endo, and nothing more sinister x although having deep infiltrating endometriosis my ovaries are stuck to my bowel it hasn’t got attached deep enough to show on colonoscopy x it’s worth ruling out stuff, but scans and lap will show way more and without having somethibg shoved up ya bum 😳 I had mine before official diagnosis when they weren’t sure it was not IBS/ Chroans as had really low iron at the time too x

Char411 profile image
Char411

Mine was all clear even though I had endo in my rectum. My gastroenterologist and gynaecologist said if a colonoscopy is done during your period they may find some endometriosis cells but any other time and it’s very unlikely. I didn’t have mine done during my period as I would have found it too painful. I think if you do have bowel symptoms it’s always good to have one to rule out any other causes. Endo is great at hiding l, mine didn’t even show up on an MRI yet during my lap it was found in my rectum, behind my ovaries, my cervix and my pouch of Douglas. Tests are great for process of elimination however when they start coming back clear they can put a lot of doubt in your mind. I would go for lap, to be honest I found my colonoscopy more painful than my lap.

Good luck with everything x

HiDee555 profile image
HiDee555

I have been through all of the Endometriosis (beyond stage 4 - Although they don’t measure it in stages anymore); Adenemyosis; frozen pelvis and Endo on bowel. I had my total hysterectomy and BSO 6 months ago. It took about 15 years for me to get diagnosed. I was back and forth to docs with pain; blackouts; migraines etc. I had severe constipation- and I blacked out from bowel pain a few times. Anyway - I struggled to get my doc to do much. He eventually sent me for a bowel scan (ultrasound). The radiologist was very good and noticed something wrong with my uterus! (This is rare for them to spot on a scan - so I don’t recommend that you use this as your means of diagnosis). I was then sent to a gynaecologist and I had an MRI which showed Endo - but he still had to do a laparoscopy after that. That was 9 years ago. A year ago, I went to a BSGE accredited Endometriosis gynaecologist (they specialise in Endometriosis) - who can tell from an MRI if you have Endometriosis. He didn’t need to do a lap. I then had my hysterectomy a few months later. If you go on to BSGE org website - it lists the various BSGE hospitals (and accredited surgeons/gynaecologists for each hospital. To avoid potentially waisting your time with a gynaecologist who isn’t specialised in Endo and may not recognise it (I’ve heard so many stories like this - where women are sent away after Laps even because their normal gynaecologist couldn’t identify what Endo was - my friend with severe Endo symptoms was one). But I’m sure there are many who would know - it’s just best to go to a BSGE one. This is who you should ask your GP for a referral to. Hope all goes well hun x

Telli686 profile image
Telli686

Hiya, im sorry to hear everything you've had to go through, I have had countless ultrasounds, MRIs and blood tests, stool tests, I can't even remember I've had so many and absolutely everything came back clear. I have almost every single symptom of endo and yet they have always fobbed me off with IBS despite my symptoms being cyclical. I was finally (after fighting 10 years) booked in for a laparoscopy to have a look and see, but I was so anxious and downright terrified to the point I convinced myself my pain was all in my head and I cancelled the op. I have a colonoscopy booked purely because i panicked after cancelling the lap and I wanted to make sure the docs knew I was serious about my pain and want diagnosis but without surgery first so I just went quickly for the next option, but now am regretting booking without considering it first! I really don't want to put myself through something I know in my gut won't show anything, pardon the pun. Endo so rarely shows in a colonoscopy I don't know what I was thinking! If I cancel now they will think I'm just making it up as I keep cancelling things that aren't scans, but I'm just so terrified of the risks of things I end up working myself up too much and cancelling! Even my friends and family are fed up with me cancelling things but they just don't understan the anxiety crippled me. I want to do as you say but do the gynaecologists charge, or can you get referred to a BSGE one on the NHS? I can't afford private. Thank you xxx

Char411 profile image
Char411 in reply to Telli686

Your GP should be able to refer you to a BSGE centre. Do remember anxiety can also be a symptom of endo, one of many of the cruel symptoms this disease brings. Just remember once the lap is done you will have answers regardless whether it be a diagnosis or ruling it out and a plan to move forwards in other areas..either way it’s best to know so the self doubt can be put out of your mind. I was full of self doubt before my lap but deep down knew it had to be endo. We know our bodies best.

All the best x

Telli686 profile image
Telli686 in reply to Char411

Thank you, I will Book a GP appointment and discuss it with them, I have heard that it can affect anxiety and depression of which I also suffer, just more points leading me to think it's endo, definitely considering cancelling the colonoscopy and focusing on getting back in with a lap, but it's gonna be tough! All the best too xxx

weekari profile image
weekari in reply to Telli686

You can get help to get you through the lap. Your GP can refer you to psychology for health anxiety that is preventing you from having necessary procedures. This is a common referral in health psychology, lots of people are to scared to get a procedure they need and psychologists will work with them to help them understand their anxiety and find ways to overcome it. Lots of procedures are cancelled due to people's fears, it's really quite common. If you've had other traumas in your life, it might be worth mentioning to your GP for the referral.

I was very scared before my lap but it was actually fine and as pleasant as these things could be.

You don't need to worry about what the Dr's think of you cancelling. Most of the time they won't even realise you're the person who cancelled and if you explain to them you have anxiety about procedures then that'll make sense to them. You are definitely not the only person who has cancelled procedures due to your fear! Don't have a procedure just to show them you're not "canceller". You've got to do what's right for your. Get an understanding GP, explain your anxiety, get a referral to psychology if you think that'll help and get the procedure you need. Everything will be OK. You're allowed to be scared!

I also recommend getting an MRI. It's completely easy to have and can detect endo. That's how I was recently diagnosed (mine was missed with a lap).

Telli686 profile image
Telli686 in reply to weekari

Thank you, it's really hard when you don't have great support around you, as much as they try, they will never understand and seem to get angry if I mention cancelling anything so I can't talk to family. I did mention my anxieties to my gp last time I saw her and she gave me a card for online counselling but tbh I don't think it will help without me being there in person, I'm scared to even mention trying a lap again and cancel the colonoscopy I don't want to make matters worse, but I really can't bare the thought of having a colonoscopy in 3 weeks for them to tell me nothing's wrong with the risk of bowel penetration as well! With the MRI do you have to have a specific type as I'm worried mine missed endo when I had one a few years back? Xxx

weekari profile image
weekari in reply to Telli686

I don't think it's a certain type of mri and not all endo can be seen on an mri. I think it's just if it's deep. I don't have many typical endo symptoms so I suspect mine may be a bit different 🙄

I really think the phone counselling could help, if only just to give you some support and someone to talk to. It can be so helpful. It sounds like you are awful worried about a lot of things and it really could help with that. Phone therapy does work, it's surprising how open we can be on the phone, especially once we've spoken to someone a few times.

Have you tried any hormone treatments, like the pill? They can be tried without any diagnosis and you could get some relief.

Xx

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