Colonoscopy Pain

I'm so glad I found your post. I had a colonoscopy with sedation this morning and it was excruitiatingly painful. I was wide awake throughout and in so much pain that I had to be given two doses of Pethadine, not that it made much difference. When it was over at last, I felt shocked and traumatised by the ordeal. The consultant seemed to think I'd made a fuss about nothing, though the nurses who looked after me were much more sympathetic and understanding. Ironically, ten minutes after the colonoscopy finished, the sedation seemed to kick in and I fell into a dazed stupor for the best part of an hour. Never again! If I ever have to have one of these barbaric procedures again I will insist on a general anaesthetic and pay for it if I have to. As far as I'm concerned, all the websites I read which said that colonoscopies are not painful are simply telling lies. Be warned anyone else facing one!

I had my first ever Conoloscopy (with no sedations just G&A) today and I am in shock still. They asked me if I had any questions before they started the procedure and ofcourse being the anxious annie that I am I asked ''how much is this going to hurt me''. The nurse advised me it isn't painful - just abit uncomfortable. Uncomfortable isn't a word I'd choose to describe the ordeal, more like TORTURE. It was so so horrific. PLEASE ask to be sedated. I was crying in pain, the nurses were so lovely, one stroking my hair whilst the other fed me G&A and another nurse was cheering me on telling me how well I was doing. Cut a long story short, the camera exited me and I was left to feel traumatised from this experience, I feel really upset that I wasn't pre warned about how painful this was going to be. Almost like somebody digging at the raw flesh inside your stomach with a knife. I don't mean to scare anybody, alot say it doesn't hurt at all which I believed and now know that them saying that is 100% far fetched. I am writing this to pre-warn people about the unexpected level of pain and if this will stir somebody to have sedation and not go through what I have been through today then I am happy to share this really unpleasant experience.

Hi I sincerely hope all goes well for you  Take care 

I got told that the excruciating pain I was feeling when they first started and were near my uterus was because of a salpindectomy I had, it felt like I was being ripped inside out and after the procedure and up to now nearly a week after I started having vaginal bleeding which was quite scary as I am on the implant for birth control and as such havent had a period in years and now left with such pain in my uterus and weirdly inside my belly button where I have terrible scarring due to the keyhole procedure location becoming repeatedly infected! 
 

They gave me the tiniest amount of fentanyl despite seeing that I am on quite strong opioids on a daily basis already and have been for a long time due to a birth defect in my hips so the tiny amount they gave me did nothing at all (my post op pain after salpingdectomy was so bad they had to give me the sedation used for mentally agitated patients that knock them out immediately as morphine etc wasnt working) 

the Midazolam amount they gave me 2mg was less than I got when I has my wisdom tooth pulled, when they gave me that I was out for the count and then slept the entire day too whereas post colonscopy I struggled to sleep! 
only time I get any relief is in bed if I pull my knee's up to my chest! 
I worry that my fibro is stopping me from healing properly from all the biopsies and polyp removal! 
 

i think I will warn anyone who has to have one thaf potentially it could be bad, what I hate is there is no aftercare you dont know do you try to get hold of the place who did it, your gastroenterologist or your own GP. 
The paperwork they gave me doesnt help just says i'll feel uncomfortable for a day or two, not a week after, nothing on if it causes abnormal bleeding in women who arent due or meant to have a period and they only make reference of either constipation or diarrhoea not having both in the same day!!! 
 

if I get an inclusive or no diagnosis for all my issues from the consultant after this I may end up making a little doll of him! Lol 

I too had my first colonoscopy today.. went in thinking I would have some kind of sedation but recieved none due to the fact I have myasthenia gravis .. the pain was absaloutly horrific.. worse than child birth! I was in agony.. kept asking if this was normal .. with no reply.. after.. I feel in shock that this pain can be inflicted on someone without any warning.. will never have another one .. ever! 

I had a colonoscopy. I was absolutely petrified. It took me ages to work out how to take the movie prep, and living alone made it so much more difficult. A neighbour kindly took me to the hospital, not ideal as he was a male. And I was in tears. He had to stay hanging around for four hours because I had had sedation. Sedation that didn't work I have never felt pain like it, I was in tears.  I couldn't believe that I  felt like somebody was cutting me open with a knife and at one stage two members of staff, lying on my tummy . After what seemed  like hours and hours, The doctor decided to abort a colonoscopy. And I was informed that I would have to come back and have it done again. Apparently the doctor had only managed to get the camera in 2 to 3 cms and had  not moved further than the sigmoid. I was horrified to think I had been lying on the bed in agony for nothing. The pain during the colonoscopy was something I just cannot describe. I thought I was going to die. It felt like I was being hung drawn and quartered down below. I was taken back to the recovery in tears. Tears running down my face my nose was running I didn't know where my handbag was., I was told I wasn't allowed to move because I've been sedated , sedated with what?, I have no idea because  to me there  was no sedation whatsoever. I did not feel like I'd been sedated when I was back on the ward. They offered me a drink and a biscuit which I accepted and then I said I wanted to go home and they said you can't, because you have had sedation. In spite of being in tears, I told them I cannot stay in here anymore I'm going to explode. I said do I look like I've been sedated I actually felt I could've probably driven home. But I had to make a phone call to my neighbour and ask him to come and pick me up and take me home  I don't even live near the hospital. I don't know why I couldn't have had it done in more locally. And I cannot understand why they wanted somebody to stay with me for the night. The person that came to pick me up was a male neighbour. I live in a one bedroomed apartment with my cat. I don't have room for visitors. We're not all made of money and living in big mansions, with lots of friends and families waiting on us hand and foot. I am a 71 year old female, who,lives alone .  Writing this is  making me cry again. One of the nurses in recovery said she would ring me on Tuesday 3rd May 2022 There is absolutely no way I am going back to the hospital and there is absolutely no way I am having another colonoscopy,:  given in such a way with sedationthat  did not work, and having to endure that terrible pain. Not to mention three days prior where the diet is changed and then you're not allowed to eat anything at all. All the worry caused from the date the hospital phoned me , and told me my appointment for my colonoscopy  would be in three weeks time. I couldn't get my head round it I was so scared I was taking diazepam to try and calm me down. I feel there is a need for me to make a complaint against the hospital for the inability to sedate me enough for me to relax.  It is an experience I would not wish on anybody, not even my worst enemy. 

Hello billybob09, what an awful experience you've had but I can assure you that many more of us have suffered and been traumatised as you have.  I don't understand how they still insist on doing them this way when so many are aborted and everyone has to go through it again, if it's painful the first time how can they think the second time will be better?  So I refused the second one, arranged to see my GP and complained to him about how bad it was, he listened and then out of the blue I received a letter one Friday afternoon asking me to go in the following morning for a scan.  I attended this appointment not fully aware of what would happen but a lovely nurse attended to me, I was guven an injection with dye and a scan was taken without pain.  So please just seek your doctors advice and explain what you have been through.  We are all on your side with this so it's good that you posted and realise you're not alone.  Take care, Carol x 

Thank you Carol for your info regarding colonoscopy. I honestly thought it was just me at first. I hope my GP will understand the trauma I have been through. I seem to spend half my life collecting medication, including chemo tablets. 
doctors, phone call appointments, face to face appointments.

probably not worth complaining to the hospital, I honestly thought it was all my fault and kept apologising for crying etc. 

CT scan sounds far better .  Thankyou for your advice . Maralyn x

Hello Maralyn, apparently not everyone can have the scan due to what they need to see but still ask for full sedation or more sedation, my husband had cancer and some of the things they did to him he said was worse than the cancer, so stand yiur ground and talk it through, if you need it then it should be done so as to not traumatise you.  I love the advice, just relax, whilst you're in agony!  Carol 

When the hostpital comes back to you, ensure you speak to your consultant and ask them what they can offer to make the procedure more tolerable. You don't say why you had the colonoscopy - I am assuming it was for colorectal cancer screening? A CT colonography is less invasive and should be far less painful, though if it did show anything then you'll need a colonoscopy anyway to gather biopsies or remove polyps. 

I think even the maximum amount of midazolam and fentanyl they would be willing to give you would not touch the type of pain you had to endure. Even with sedation and analgesia, about 4% of patients have 'moderate' or 'severe discomfort'. This is dinner table talk for 'hell will freeze over before I have another colonoscopy'.

Public Health England say that your hospital should be able to offer you a different sedation - propofol and this will knock you right out. It is safe and is the sedation of choice in USA and Germany but it does require an anaesthetist to be present. Some hospitals run a colonoscopy list under general anesthetic, but I doubt this will be offered for just screening. Whatever your hospital can offer, your consultant has an obligation to link you to a service that can help. You may have to keep pushing until you get an answer.

The sedation can impair your thinking and balance putting you at risk of e.g. a fall. Having a fall at 71 can often not end well. Having said that, they would not have stopped you from just walking out - while they way they spoke might make you think you had to obey their 'rules', it is only advice.

I am sorry you had to go through that.

Thank you everyone for your help and kindness. Msralyn. 

Hi, I had a colonoscopy 5 days ago in Kent with so called sedation.  I'm still traumatised from it.  The pain was horrendous and the more I groaned the rougher the doctor got.  It was bloody barbaric and I still can't believe it happened..  

I am making a formal complaint.  To suffer like that is not necessary in this day and age.  I need another but hell will freeze over first.  I've asked for GA but been told I'd wait forever with waiting lists as they are so I asked for a CT instead and was told the colonoscopy department can't arrange that.

I will speak to my GP tomorrow to see if she can organise something.  Personally, I think they owe it to me.  Everyone in the room knew how much I was suffering and they still continued.  Kept saying nearly finished, nearly finished, which made me hold out.but it was another 20 minutes of agony.  I've given birth to twins and it trumped that about 10 times.  It was brutal.

I feel really angry now, which is better than the blubbering mess I was, and it will help me fight my corner.  That doctor is not going to be the cause of me not being able to get further treatment.  I hope I get a letter like yours Dor06

Hi, I had a colonoscopy 5 days ago in Kent with so called sedation.  I'm still traumatised from it.  The pain was horrendous and the more I groaned the rougher the doctor got.  It was bloody barbaric and I still can't believe it happened..  

I am making a formal complaint.  To suffer like that is not necessary in this day and age.  I need another but hell will freeze over first.  I've asked for GA but been told I'd wait forever with waiting lists as they are so I asked for a CT instead and was told the colonoscopy department can't arrange that.

I will speak to my GP tomorrow to see if she can organise something.  Personally, I think they owe it to me.  Everyone in the room knew how much I was suffering and they still continued.  Kept saying nearly finished, nearly finished, which made me hold out.but it was another 20 minutes of agony.  I've given birth to twins and it trumped that about 10 times.  It was brutal.

I feel really angry now, which is better than the blubbering mess I was, and it will help me fight my corner.  That doctor is not going to be the cause of me not being able to get further treatment.  I hope I get a letter like yours Dor06

I'm so sorry to hear about your horrendous experience and fully understand your frustration and trauma, I've had this done myself and refused to have another one, I did end up with a scan but it depends on where they want to investigate.  I assume you must have read my latest posting about receiving the telephone call from the patient experience team but I raised 15 points of lack of care and my husband died five days after coming home.  But if you want to make an official complaint then please contact the Head of the Trust that carried out your colonoscopy and ask why the procedure was allowed to go ahead when you were in so much pain.  Until we start standing up for ourselves and our loved ones nothing will change.    I hope you get the answers you want.  Carol 

Earlier this year I endured a similar ordeal to you. It breaks my heart to read yet another brutal account.

I put in a formal complaint and eventually had a meeting with the physician, the head nurse and the department director. The physician apologised for not administering additional pain relief when he could clearly see I was in agony. He could provide no reason for neglecting my distress on that day. He answered all my questions and explained how my experience had caused him to reflect on his performance. The department accepted their responsibility to improve the treatment of the 4% of patients who find the procedure intolerable. However, no one in the room could offer a compelling account of how they would achieve this as they weren't looking to expand their GA list, which was already failing to keep up with demand for child patients and those with learning disabilities.

I wasn't completely sure what I wanted out of the meeting, but I do think it helped. You may not find your physician as honest or forthcoming in their failings.

Thank you.  I am waiting for someone to contact me regarding my complaint and still waiting to see my GP about further treatment.  I will go to the Head of Trust as you mentioned if they don't take me seriously.  I'm very sorry about your husband.  Just when you think it can't get worse it does.  Susan

Thanks Dave.  I have only spoken to nurses so far and they have been very sympathetic and repeatedly apologised for what I went through.  I'm promised a call today to get my formal complaint under way.   

I'm glad your meeting helped and now I wonder if I'll be offered one.  I would certainly go if I am and I would hope my doctor would be as honest as yours.  Frustrating though when they know something's wrong but don't know how to put it right.  We'll see

Hope you get it sorted - I am going to refuse my COLONOSCOPY. I know someone that works in that department and they said a lot of people just run out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had the exact same response from the doctor that was doing my colwhen I screamed out in pain I've had 4 in total over a few years and I refuse ever to have another I had back and tummy pain for months afterwards Doctors and nurses are generally extremely  sympathetic but certainly in this area of medicine it doesn't appear to be the case

Update from me...I did put it a formal complaint.  I had to wait 16 weeks for a reply and even then it was late.  The response was, ready for it, I hallucinated everything due to the pain relief.  (I should be so lucky!)  They minimised everything and gaslighted me.  Needless to say, there is now another complaint which isn't nearly as polite as the first one.

Well that sounds appalling. Would you consider redacting all names and details from your letter and posting it here? If you are continuing to persue this complaint it might be best to wait until it's over though.

Thay want me to have a colonoscopy next week, i said only if you knock me out.he said thay could not.i cannot do this again the time before i black out,only to awake in worst pain than child birth.i am still traumatised  by it,everything you read says its uncomfortable, thay must be mad,thay should all have it done to them,then thay would know how we feel.glad to be able to tell someone.

Im with you all the way,i about to have another one,i keep crying remembering the old one.i no i will not let them,its like putting your hand in a door way,slamming the door on it,then asking you to do it again.you would not do this to a animal.