Horrendous flexible sigmoidoscopy - Endometriosis UK

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Horrendous flexible sigmoidoscopy

Kirst625 profile image
36 Replies

Hi,

So today I had a flexible sigmoidoscopy to rule out anything significant bowel related to try and explain some bleeding and mucus along with the usual IBS symptoms and some inflammation detected in my bloods. I really wasn't too worried about it at all, a colleague had had one and said it had been fine. I was therfore not prepared for the excruciating pain I experienced whilst the consultant was trying to get up round the top corner of my intestine, by my stomach. Suddenly in tears, swearing (unlike me!) biting on the gas and air tap and squeezing the nurse's hand like billio wanting it to stop immediately. My shock, discomfort and embarrassment of having created such a fuss after being reassured it would just be 'uncomfortable' was heightened by hearing the consultant say to the nurse as I was being wheeled away 'it's always the young ones...' (making a fuss). Anyway, apart from being annoyed and upset about that, I'm more curious about why I was in an inordinate amount of pain, the worst of my life so far. Looking on here I can't find anyone else who has described it as such? Any thoughts and similar personal experiences would be much appreciated X

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Kirst625
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36 Replies
Lovisa profile image
Lovisa

I had it done last year, everyone told me who had it done that it's not painful.. omg it hurt on the bend felt like I was being torn and blown up from the inside, soon as he got round the bend it was fine.. never want it again.

Kirst625 profile image
Kirst625 in reply to Lovisa

Thanks so much for replying and helping me to feel it wasn't just me! Agreed - never agreeing to it if needed in the future without sedation!!

RhiannonT profile image
RhiannonT in reply to Kirst625

I've had a colonoscopy and a flexible sigmoidoscopy. Was told the flexible sigmoidoscopy is not painful just uncomfortable. I'm in the same boat as you it is without a doubt the worst pain I have ever felt in my life. I will not be having it again unless they sedate me. And the pain I was in afterwards was excruciating. Ended up in A&E xx

Lovisa profile image
Lovisa in reply to RhiannonT

I was sedated and it still freaking hurt :( I'm amusing it was because my bowels are stuck to my pelvis wall. "shudder"

Kirst625 profile image
Kirst625 in reply to Lovisa

Please see response below to Pandora Penguin

Kirst625 profile image
Kirst625 in reply to RhiannonT

You poor thing! It is horrid isn't it!! Hope it didn't take you too long to recover after. Can I ask if you have other issues in your pelvic area? I'm wondering if the intensity of the pain is perhaps linked to this in line with Lovisa's experience xx

Kirst625 profile image
Kirst625 in reply to RhiannonT

Please see response below to Pandora Penguin

SarahMow profile image
SarahMow

I had one of these done on Friday as well. Was the worst pain I've ever experienced in my life. 2 lots of sedation and gas and air and a could still feel it going round the bend. Dr told me there was nothing wrong. So glad there's others out there that found the pain excruciating!

Kirst625 profile image
Kirst625 in reply to SarahMow

You poor thing! Although not nice to know of people suffering it's reassuring isn't it to know it isn't just us that found it so awful. Mind you, if I'd have known beforehand I might have refused so at least it's done!

Kirst625 profile image
Kirst625 in reply to SarahMow

And can I ask too if you are aware of other difficulties in your pelvic area it might be related to like Lovisa above?

SarahMow profile image
SarahMow in reply to Kirst625

I have endometriosis but after my surgery my consultant didn't tell me where abouts it was found and didn't write to my doctor to tell her either. So I'm assuming it's on my bowel as I do have a load of problems with bowel movements etc

Kirst625 profile image
Kirst625 in reply to SarahMow

I hope you get the answers soon, you need to know don't you! My GP thinks I could be the same and was checking bowel before taking me down the endometriosis pathway. How are you feeling now? X

Kirst625 profile image
Kirst625 in reply to SarahMow

Please see response below to Pandora Penguin

toria77 profile image
toria77

I have had 2...1 during my endo flare up was excruciating and so so painful...one 3 weeks later at a different point in my cycle and it was a breeze no pain at all and barely uncomfortable! Sounds like there was no sympathy from your operator at all :(

Kirst625 profile image
Kirst625 in reply to toria77

You poor thing having to face another after the first experience! Glad it was so much better. Yes, I was already a bit traumatised by the shock of the pain and it did tip me over the edge. Being encouraged by family and friends to make a complaint X

toria77 profile image
toria77

The chap i had for the first one was sympathetic to pain and stopped it. He actually said for most people it is painless but for those with bowel /rectovaginal endo even if it has not penetrated the bowel wall it can be very painful.

Kirst625 profile image
Kirst625 in reply to toria77

It sounds like he knew his stuff, thankfully. I really wanted it to stop but they assured me with gas and air they could continue and it would be fine.... it wasn't! I'm goimg to look into how I could raise this in the best way so they look at their procedures again. Sedation was briefly mentioned but two medical professionals both said it was basically unnecessary. I think it looks like for some women it is just 'uncomfortable' as you are prepared for, but for others it can be horrendous. And I don't think this is properly accounted for. Thanks so much to you and everyone sharing their experiences, has helped me to commit to trying to get something done about it X

Kirst625 profile image
Kirst625 in reply to toria77

Please see response below to Pandora Penguin

Mamaabc profile image
Mamaabc

I think I was always asleep so just felt some pain for a day or two after. I am Suprised they kept you up for that procedure. They also gave me medicine to help forget. I think that might of been with a colonoscopy though.

Kirst625 profile image
Kirst625 in reply to Mamaabc

Thanks for responding and sorry to hear you were in pain for a few days after but sounds on the whole like it was well managed for you. Please see my reply to Toria77 above X

PandoraPenguin profile image
PandoraPenguin

I had a barium enema a few years ago and that was traumatic as it wasn't done right and incredibly painful. I thought I was going to explode. The staff kept saying it shouldn't be that bad and treating me like a nuisance. I had already warned them I was sure I had adhesions to my bowel. I was dispatched as normal. Only when I got to a BSGE Centre and had a lap did they find that I did have adhesions to bowel plus endo in Pouch of Douglas

Kirst625 profile image
Kirst625 in reply to PandoraPenguin

You poor thing, it sounded as horrendous as my experience. I felt I couldn't make it stop as well for fear of being even more of a nuisance than I already felt. My sister who was with me and felt so strongly about my visible distress she has activated a complaint on my behalf. I spoke to a wonderful woman today at PALS who has advised I take a formal route if I want the possibility of my desired outcome - for them to look at the whole process and why they don't explain how painful some women can find it to help them make informed choices about pain relief options. If I anonomise responses would you be ok for me to include your feedback in general terms? No worries if not though, no pressure 😃

SarahMow profile image
SarahMow in reply to Kirst625

That sounds so awful but also really interesting. I got passed off as normal with mine too. Do yous know if there is a bsge centre in Newcastle? I've tried googling it but nothing is coming up

Kirst625 profile image
Kirst625 in reply to SarahMow

Determined to try and make a difference somehow! Think you might be in luck - bsge.org.uk/centre/ seems to be one there!

I had one a couple of years ago when I was still trying to get a diagnosis. Had it with no sedation or pain relief because they told me I wouldn't need it. First corner under left rib was incredibly painful.

Kirst625 profile image
Kirst625 in reply to

Please see response to Pandora Penguin

tiredBFmum profile image
tiredBFmum

Oh my the corners pain!! I had this on monday. ouchy.

You are not the only one. But lots of people find it easy - my dad has a sigmoidoscopy with many polyps removed and didnt even need gas and air.

I however fainted in the toilet with the enema and had to pull the red cord in the bathroom for the nurse to come and rescue me from the toilet. The pain and fainting feeling from the enema alone was bad enough. I then went to the loo a second time and the same thing happened. I can only assume my bowel cannot cope with suddenly being unnaturally expanded with liquid enema and caused crazy pain.

I have given birth and found that a breeze compared with bowel pain. I have never been diagnosed with endo. Got appointment in June with gynae but I have had period pain, ovulation pain, bowel pain, peeing blood, depression, fatigue - lots of endo symptoms since puberty.

During actual sigmoidoscopy I was squirming and scratching the pillow and relying heavily on the lovely entonox. I thought they must have perforated my bowel from the pain but all was fine. completely normal results.

Your experience and others above makes me think i have bowel endo or adhesions and i actually just posted myself on here as i also had vaginal spotting after and it seems to have triggered early period. did you find the same?

Has your endo been diagnosed? where is it?

Kirst625 profile image
Kirst625 in reply to tiredBFmum

Aw you poor thing, that sounds totally horrendous! I had bowel prep at home in two doses and although it wasn't very pleasant it was much more manageable than yours sounds bless you. I'm sorry, I'm not diagnosed although my GP and new gynae both think bowel related Endo is a possibility. I'm starting prostap, menopause injections, on Friday to see if this calms down the symptoms so they can decide next steps, but sounds like a laparoscopy is probably in the offing either which way. I have had residual pain from the sigmoidoscopy on Sat but no spotting or early period. Hope you are feeling ok and keep me posted on next steps x

tiredBFmum profile image
tiredBFmum

Kirst625 thanks for your reply.

Hope the drugs help your symptoms.

I expect we will both need a lap.

I was offered a lap years ago for possible endo but terrified of even minor surgery so tried reflexology, diet changes, painkillers etc and then pregnancy and breastfeeding stopped the period pain. Now it's all back with a vengeance hence the bottom camera fun and awaiting gynae appointment.

Good luck if you have a lap! And impressed you did the bowel prep at home. Hope your GP and gynae are nice and open minded. It's so much easier when they seem to be listening to you.

Kirst625 profile image
Kirst625

I think you're right about both needing laps. Good luck with your journey and keep me posted. Yes, thankfully after many years of feeling fairly belittled and a nuisance I have found a diamond of a GP and the second Gynae I saw was very good too (first dismissive as IBS so have requested I see second one again) First injection today and have had a few heart palpitations this afternoon so will keep you posted equally X

Laura_Jane1983 profile image
Laura_Jane1983

Hi kirst625,

I know this is an old post but I wanted to say a bowel consultant once explained this to me; he said people with endometriosis have horrendous pain during these procedures because of the outside structure of the bowels. Imagine a pop bottle completely crushed and 'glued' in that way. That is our bowel wall, it's potentionally crushed and bent out of shape with glue (endo) holding it in that shape. Then if you blow the bottle back into shape it will go 'back to normal' well when the camera is inserted it blows air into the bowels and forces it back to its original shape however the endo on the outside that's 'snapping' away is inflaming the area so that's why we literally scream out in pain.

Kirst625 profile image
Kirst625 in reply to Laura_Jane1983

Hiya, thanks for sharing that, sounds like you had a really helpful consultant there! I'm not sure how much the endo that was eventually found played into the pain of the sigmoidoscopy. I was told by the surgeon there was one spot on the peritoneum covering the bowel but that it came away easily - I did have it in both pelvic walls, pouch of Douglas and 2 recto-vaginal nodules but it was the top bend under rib cage that caused the excruciating pain. Time will tell I guess, with a new consultant, whether there was anymore that wasn't derected on the bowel itself that could have contributed. But my MRI did detect a 'long and torturous sigmoid colon' so that may have played a part too.

My sister put in a complaint on my behalf about my treatment as she was so shocked to see the state of me coming out the hospital. I got a very poor response, particularly the bit saying at no point did they think during the procedure I was in unmanageable pain and I hadn't asked them to stop. I'm taking it forward through Community Health Council as I don't want other women to have to suffer in the same way.

Hope you're doing ok on your journey and thanks again for your helpful thoughts x

Kob04 profile image
Kob04

I had one today they said didnt hurt and ive had very painful colonoscopys...jesus this today has scared the hell out me it killed seriously hurt like hell worse than ever before xx it was horrendous

19GilmoreGirl profile image
19GilmoreGirl

Hi I know this is an extremely old post but I’m so glad I have stumbled upon it I have had a Flexi Sig today and oh my bloody god the pain was unbelievable I have actually just posted on here asking anyone if they have had the same experience I’m so glad I’m not the only one the doctor got to the first corner and I thought I was going to pass out from the pain I also swore and asked them to stop I couldn’t cope ! I also got made to feel like I was making a “fuss” I have now been referred to have a CTC scan which I don’t think I want as will cause me pain I just don’t know what to do xx

Kirst625 profile image
Kirst625 in reply to 19GilmoreGirl

Hey my love so sorry for my very late response x didn't see the email notification and haven't been on a while. I'm so sorry you had such a rough time :( I will message you with an update of where I got to with it xx

ConfusedDoe profile image
ConfusedDoe

I had one done on friday, everything was fine until they reached that part of the bowel, I was in excruciating pain and was told to keep sucking on the gas and air, I was yelping out in pain really bad, I did ask as soon as they put me in the recover room why it hurt so much, and they said its due to the part of the bowel thats attached to the womb and the Endometriosis thats near the womb, it makes it more painful for us to have that procedure done. Thats why we were in excruciating pain unfortunately.

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