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Painful hysteroscopy

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I had this procedure today and it was absolutely horrendous. I received no pain relief, was told the pain was ‘like period pain’. It wasn’t. It was like being stabbed. Bled profusely for most of the day. I was told to take ‘paracetamol’ an hour before the procedure, which I did and it made absolutely no difference. The consultant said it would be ‘uncomfortable’ because I was post menopause. This procedure should not be given without anaesthetic, a local to the cervix at the minimum. I went into shock, collapsed and ended up with very low blood pressure due to the procedure. The NHS staff were very kind and considerate. It was a female consultant who I was very happy with but there should be more honesty in how traumatic this procedure is. For me, the consultant took 6 attempts to actually get into the uterus which was excruciating. I has to have another ‘round’ as the camera was then removed and the biopsy taken. 
i have had a colonoscopy, endoscopy and cystoscopy, all without anaesthetic, this was the worst procedure out of all of them.

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That’s gruesome, I’m so sorry to hear this. Completely unacceptable and against all the guidance. We must must must make this barbaric process stop. 
 

it’s not always easy to follow up and complain. It’s my view that such harm should be reported as a serious safety incident by the staff and then fully investigated. 

@Claire Cox do you think we could encourage a formal thematic review of these cases? 

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So sorry you've experienced this, you're 100% correct, they are not being honest in regards to the pain you feel during this procedure it is indeed hell ! I hope you make a speedy recovery xx

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Dear Pipsqueaker

I'm Katharine Tylko - a researcher for the community interest group the Campaign Against Painful Hysteroscopy www.hysteroscopyaction.org.uk    On Twitter we're @HysteroscopyA   Am so angry that you were treated appallingly.  The Royal College of Obstetricians & Gynaecologists and the British Society for Gynaecological Endoscopy in 2018 issued a statement telling hysteroscopists to follow GMC informed consent guidelines and offer all hysteroscopy patients upfront the option of general anaesthetic or IV sedation with analgesia.  Hysteroscopists were also instructed to stop (and reschedule with GA) if the patient was in pain.  These recommendations have applied throughout and after the covid pandemic.  The Campaign Against Painful Hysteroscopy knows that the RCOG guidelines and patient leaflets are being ignored by most English acute Trusts.  Freedom of Information Act requests and responses show that currently 1 in 3 women are experiencing SEVERE pain during the outpatient procedure.  Please if it's any use, and if you're on Facebook, then we have a closed Action/Support group of hundreds of patients.   You are very welcome to join us.  To do so please send a Faceboook friend request to Katharine Tylko (one of the admin, not a medic) and I'll add you to the group.  A good place to improve a local hospital's hysteroscopy protocol is the independent website www.careopinion.org.uk   For up to 3 years after the event one may tell one's story anonymously but mentioning the hospital's name.  Another good way of campaigning is to contact the Women's Health Minister, Maria Caulfield who responded in January to a debate brought by Lyn Brown MP asking for increased theatre capacity and anaesthetists for women who need general or regional anaesthetic or IV sedation with analgesia with sedation for endoscopy of the womb.  I hope this makes sense.  The Campaign Against Painful Hysteroscopy is indebted to all of PSL's staff for highlighting the gender pain gap suffered by thousands of hysteroscopy patients each year.   This cruelty has to stop. 

 

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snip - HSJ hundreds of women left distressed.JPG

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On 08/02/2020 at 12:58, ShropshireJos said:

I had an horrendous outpatient hysteroscopy 

Referred after pm bleeding, having started menopause aged 36. 

Researched online before and saw some women had experienced pain. I specifically asked the dr on more than one occasion if there was a chance of pain. He said have you given birth vaginally?, I replied yes, to which he said the worst i would feel would be akin to period pain. It was barbaric, i was crying and passing out with pain.  The nurses in the room with me simply tried to chat about inane topics to distract me! Was unable to walk back to my car fir about 2 hours after as each time i stood up and began to faint again. 

I am appalled that in 21st century Britain,  the NHS is still allowing this

Here's a link to my full story https://hystericalwomen.co.uk/2019/12/11/the-most-painful-moment-of-my-life-the-national-scandal-of-barbaric-outpatient-hysteroscopy/

This was my exact experience minus the car situation. Thank you for sharing. I was searching about this because it was really bad. Half fainted during it. Lovely staff but the procedure itself without anesthetic was really uncomfortable. 

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Had a very painful hysteroscopy last week. Did not expect the pain I endured at all, the patient info never mentioned anything other than period type pain. It also advised to take 2 paracetamols and 2 ibrofen (I don't take NSAIDs) However, after numerous cassettes of local anesthic to cervix not plesant and somewhat painful but manageable the attempt to get the metal rod through my cervix resulted in me screaming mid sentence whilst chatting to 'local vocal" (but really is this service supposed to be a form of analgesia?). I have recieved a letter which detail I have stenosis of the cervix, was this not observable ? I suffered,  the worst pain of my life, I had taken 2 cocodomol 30/100mg to no avail, when the procedure was stopped due to my apparent screaming in pain, I apologised to the medical staff, telling them I was a failure and a wuss. I was left to shakily get dressed a nurse checked on me to find I had removed my top as I was so hot I felt sick and felt faint and in the small room where I drank a pot of tea, a bit off due to the codine. I was ill for the rest of the week. I went to the walk in centre because I felt so unwell and told to give myself more time to recover.

In my recovery I researched the subject and found a whole lot of info I had not been informed of;

Why did no one inform me that 33% of women find the pain excruciating?

That those post menopause and never given birth are most likely to suffer such pain

Why was I not informed and given the choice?

Do trusts/hospitals get financial incentives for doing outpatient hyterscopies - if so does this influence the information give to patients?

Does the Hippocratic oath state 'do no harm' which is then encompassed into the GMC, Good Medical Practice guidelines?

Why was Green - Top Guideline 54 for Hysterscopy Best practice for Outpatient not followed?

Why did I not research the procedure fully beforehand?  (Because I put trust in the NHS system - I learnt my lesson)

I keep reliving this every night and can't sleep, hence my early hour post.

 

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Dear Deborah,

I am so sorry you had to go through it. I also had this procedure and I feel your pain and your early hours shaking. You are not alone!

I believe, until someone takes the NHS to court because of this procedure, they will continue inflicinting pain on women in the future.

As for trusting the NHS, we share the same feeling. But even after this is resolved, the question remains, how can you trust them with anything else? 😕 

Again, so sorry that you had to go through it! 

Best,

Alex

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Edited by A_P

I went through a similar experience 4 years ago, when I had a hysteroscopy and then had an IUS inserted. It was very, very painful. The instruction to take paracetamol prior to the procedure was, at best, a joke and ‘at worst, an insult. I need my IUS changing now and I’m not going to because I can never go through anything like that again. 

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Hi @Lynne Williams

That's awful for you. And shows that the impact for patient safety goes far beyond the initial harm and moral injury.

Thanks for sharing, Helen

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I started writing this from my bed at 23:00 having just had my first Hysteroscopy at 15:00 that day. Over 48hrs after now & need to tell my story. I do not want to scare anyone but my story is not unique and I don’t wish this experience on anyone. It should not be allowed to happen in 2022.

I am 35 (no kids) & spent the last 1 year+ having appointments and investigations for bleeding between excruciating, heavy periods. The past year was full of issues with missing referrals, and then my pathway documents being ‘lost’ by the hospital. I spent much time on the phone chasing up on my ‘care’ the past year and already had little trust in the clinic (Salford Royal Gynae with it’s peeling walls, mismatched chairs, underfunded aesthetic). I was glad to be going in to remove what was likely a 2cm benign polyp & was hopeful this hysteroscopy would be the final ‘simple’ procedure.

When I finally received my pamphlet (the day before!) it was like the advice I had read online from healthcare professionals. ‘Take the pain relief before’, ‘Might experience cramp like pains’, ‘can go straight back to work’ ‘recovery 1-2 days if biopsy is taken ’. Lies! It was grossly downplayed! I turned up alone (mistake), gave a urine sample and sat in a waiting room to listen to smooth FM. I was feeling a bit nervous never having had a hysteroscopy before but the nurse who came to walk me into the room seemed happy and breezy. I thought... can’t be too bad. I entered the room which looked like a large doctors office but with a stirrup chair, curtains and lots of equipment around it. I was telling myself, surely something done in this environment cannot be that bad. The Dr was lovely and chatty, read through a form and I signed. Said I could have a local anesthetic to the cervix and even though I said oh I’m absolutely fine with injections/dentists, have a high pain threshold etc he firmly stated that it would likely be more painful having the injection than just going through it (alarm bells!). I was then asked by a 2nd nurse to change behind a curtain to put on a gown then straight into the chair to be positioned. My heart started racing at this point (natural I thought) and then all of a sudden he was talking, cleaning the outside, a speculum went in then cleaning the inside. All the time the 2 nurses were asking me questions and I was chatting nervously away making jokes and then it happened. The next part is burned into my brain moment by moment. 
 
I wanted to scream & cry looking up at the ‘wheres Wally’ on the ceiling (I never ever want to see that book anywhere again). I tried to keep talking sentences but I couldn’t, I couldn’t breathe, I felt out of body at times. I remember looking at the screen and forcing myself to try and listen to what he was saying while I felt every movement a pain I can’t even describe (I’ve had to have morphine in the past for painful injuries and this pain was even higher than those incidences). The Dr said the polyp was a mix with a fibroid and I could see it was large (in the space between my left and right tube) he asked if he could try take more away & I couldn’t believe he suggested it! I said no please stop. When he said it was over I was shaking, cold, shivery & hot at the same time. I joked about not being able to stand up when I was left to get myself off the bed & felt I might vomit. Once changed he said me down & I signed a form for a general anesthetic (shaking throughout). 
 
I was in a state of shock for the next few hours. I sat in the sad ‘post procedure waiting room’ where you are left & forgotten about with your hot drink & biscuit, phoned my family, chatting away about it all in a false ‘it was horrible but hey ho’ voice. Then tried to walk to the pharmacy & was shocked to find I could only shuffle, (you should be told you must bring someone with you, I’m a fitness fanatic and this shocked me to feel so weak) to pick up 2 medications for my periods until the GA (the first time since I raised my symptoms over a year ago that I have been offered any medication). Every step was agony in my womb, taking my breath away, I had to keep stopping. The Uber home every bump was agony & I’m still in pain today & bleeding (lies that it’s a ‘little spotting) and can’t walk properly. 
 

Not even 1 single woman should have to go through this procedure awake!! Even if 2/3rds find it bearable. Its simply barbaric. The worst part. I feel like I felt when I was raped by a ‘nice’ man when I was younger. Especially when I had the realization that the likely reason for the Dr and his assistants being so nice and chatty was because they were fully aware of the indescribable pain this procedure can cause a large percentage of women. I spent that evening awake at midnight crying hysterically having flashbacks of what happened. This is not like me. Why was everyone so nonchalant during the procedure? I know they are trying to keep you calm but it’s impossible they are not aware that this was trauma pain, I must have been white as a sheet and shaking, why was my blood pressure/heart rate not monitored, where was the gas&air that you get in A&E. Why is it so downplayed and why are women expected to bear this! I cant believe I’m reading stories of women saying it’s worse that childbirth and can’t help thinking if a man had to go through this would it have been banned without GA or adequate pain relief! How do we stop this?  

Sending love to all who have suffered this x 

 

 

3 reactions so far

So sorry to read this and to know that there was another person that had to go through this inhumane treatment. I felt every step of your journey including the bumpy roads... Having read law as part of my degree, I can see our cases being discussed at the European Court of Human Rights... 

2 reactions so far
9 hours ago, Virgo86 said:

 

I started writing this from my bed at 23:00 having just had my first Hysteroscopy at 15:00 that day. Over 48hrs after now & need to tell my story. I do not want to scare anyone but my story is not unique and I don’t wish this experience on anyone. It should not be allowed to happen in 2022.

I am 35 (no kids) & spent the last 1 year+ having appointments and investigations for bleeding between excruciating, heavy periods. The past year was full of issues with missing referrals, and then my pathway documents being ‘lost’ by the hospital. I spent much time on the phone chasing up on my ‘care’ the past year and already had little trust in the clinic (Salford Royal Gynae with it’s peeling walls, mismatched chairs, underfunded aesthetic). I was glad to be going in to remove what was likely a 2cm benign polyp & was hopeful this hysteroscopy would be the final ‘simple’ procedure.

When I finally received my pamphlet (the day before!) it was like the advice I had read online from healthcare professionals. ‘Take the pain relief before’, ‘Might experience cramp like pains’, ‘can go straight back to work’ ‘recovery 1-2 days if biopsy is taken ’. Lies! It was grossly downplayed! I turned up alone (mistake), gave a urine sample and sat in a waiting room to listen to smooth FM. I was feeling a bit nervous never having had a hysteroscopy before but the nurse who came to walk me into the room seemed happy and breezy. I thought... can’t be too bad. I entered the room which looked like a large doctors office but with a stirrup chair, curtains and lots of equipment around it. I was telling myself, surely something done in this environment cannot be that bad. The Dr was lovely and chatty, read through a form and I signed. Said I could have a local anesthetic to the cervix and even though I said oh I’m absolutely fine with injections/dentists, have a high pain threshold etc he firmly stated that it would likely be more painful having the injection than just going through it (alarm bells!). I was then asked by a 2nd nurse to change behind a curtain to put on a gown then straight into the chair to be positioned. My heart started racing at this point (natural I thought) and then all of a sudden he was talking, cleaning the outside, a speculum went in then cleaning the inside. All the time the 2 nurses were asking me questions and I was chatting nervously away making jokes and then it happened. The next part is burned into my brain moment by moment. 
 
I wanted to scream & cry looking up at the ‘wheres Wally’ on the ceiling (I never ever want to see that book anywhere again). I tried to keep talking sentences but I couldn’t, I couldn’t breathe, I felt out of body at times. I remember looking at the screen and forcing myself to try and listen to what he was saying while I felt every movement a pain I can’t even describe (I’ve had to have morphine in the past for painful injuries and this pain was even higher than those incidences). The Dr said the polyp was a mix with a fibroid and I could see it was large (in the space between my left and right tube) he asked if he could try take more away & I couldn’t believe he suggested it! I said no please stop. When he said it was over I was shaking, cold, shivery & hot at the same time. I joked about not being able to stand up when I was left to get myself off the bed & felt I might vomit. Once changed he said me down & I signed a form for a general anesthetic (shaking throughout). 
 
I was in a state of shock for the next few hours. I sat in the sad ‘post procedure waiting room’ where you are left & forgotten about with your hot drink & biscuit, phoned my family, chatting away about it all in a false ‘it was horrible but hey ho’ voice. Then tried to walk to the pharmacy & was shocked to find I could only shuffle, (you should be told you must bring someone with you, I’m a fitness fanatic and this shocked me to feel so weak) to pick up 2 medications for my periods until the GA (the first time since I raised my symptoms over a year ago that I have been offered any medication). Every step was agony in my womb, taking my breath away, I had to keep stopping. The Uber home every bump was agony & I’m still in pain today & bleeding (lies that it’s a ‘little spotting) and can’t walk properly. 
 

Not even 1 single woman should have to go through this procedure awake!! Even if 2/3rds find it bearable. Its simply barbaric. The worst part. I feel like I felt when I was raped by a ‘nice’ man when I was younger. Especially when I had the realization that the likely reason for the Dr and his assistants being so nice and chatty was because they were fully aware of the indescribable pain this procedure can cause a large percentage of women. I spent that evening awake at midnight crying hysterically having flashbacks of what happened. This is not like me. Why was everyone so nonchalant during the procedure? I know they are trying to keep you calm but it’s impossible they are not aware that this was trauma pain, I must have been white as a sheet and shaking, why was my blood pressure/heart rate not monitored, where was the gas&air that you get in A&E. Why is it so downplayed and why are women expected to bear this! I cant believe I’m reading stories of women saying it’s worse that childbirth and can’t help thinking if a man had to go through this would it have been banned without GA or adequate pain relief! How do we stop this?  

Sending love to all who have suffered this x 

 

 

I am so sorry and angry to read about your experience.  It is unbelievable that they are carrying out what is actually surgery in outpatients without anaesthetic in 2022, when pain relief is available. I hope you feel better very soon, although I doubt you will be able to forget this barbarity any time soon! There are RCOG and BSGE guidelines for this procedure and this hospital didn't follow them, but that is sadly the case for so many women all over UK.  Although you were asked to sign a consent form, this can't possibly be informed consent if you weren't made aware that the procedure can be painful for at least 33% of women and advised that you had other options, ie. having the procedure under GA. https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/outpatient-hysteroscopy/   I'm a member of the private part of support/campaigning group Campaign Against Painful Hysteroscopy.  If you think it would be helpful and would like to join us (you will find many who have had similar experiences to you)  please send a FB friend request to me Elaine Falkner (holding the black and white cat) and I can invite you to join our private group.  Its a very friendly and supportive group. We have members who can advise regarding complaining if that is something you would like to do, many have written to their MPs, and you can follow us on Twitter @HysteroscopyA .  You can also post your "story" on https://www.careopinion.org.uk/.   This is an account regarding hysteroscopy at Salford Royal from 5 years ago - clearly nothing has changed in that time: https://www.careopinion.org.uk/319772  .

Please look after yourself and give yourself time to recover. xx

1 reactions so far
54 minutes ago, A_P said:

So sorry to read this and to know that there was another person that had to go through this inhumane treatment. I felt every step of your journey including the bumpy roads... Having read law as part of my degree, I can see our cases being discussed at the European Court of Human Rights... 

Hasn't this government just removed our human rights and access to the European Court of Human Rights?

0 reactions so far

How horrendous for you. Thank you for posting your experience as we hope that greater awareness will lead to change and the end to this barbaric experience.
 

As @Elliemay suggests, the Campaign group are a good place to seek support and advice. And I agree that Care Opinion to share information as well as, if you feel able to do this, a more formal complaint to the Trust. 
 

I hope your recover soon. Such a terrible trauma you’ve been through. 

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Hysteroscopy St. James’s Hospital, Leeds

Hi, I had a hysteroscopy last week. I have been having brown discharge since January and have had  a few courses of pessaries that  didn’t work , so was referred to the hysteroscopy department after I had an ultrasound . I previously had this procedure about three years ago with no problems and no pain  and the staff were amazing . This time there were a few problems due to my atrophic cervix and when the procedure started I was found to have mucus filling my uterus which complicated things as she said it was not escaping through my cervix  . She had to use a dilator but she asked me first if she could use this and then had to use her fingers, but again she asked me if this was ok before anything was attempted . The staff were amazing from start to finish and we had a few jokes about having “ hairdressing” chat  . The nurse undertaking the procedure went through everything  before it  started , introduced the healthcare staff in the room by name and asked if I was okay with a student nurse being present , which I was . I was advised that  if I was in any pain or discomfort the procedure could be stopped at any point . Every part of the examination and procedure was explained step by step; the nurse explained exactly what she was doing , what she had found and kept asking if I was okay to carry on . Some parts of the procedure were quite painful - I’d say the worst period pain, but I wanted her to get a biopsy and to remove a polyp so I wanted to carry on .  When I got dressed she talked me through what she had found and she said she would ring me with the results, gave me leaflets and contact numbers to ring if I was concerned . It was a long procedure and I felt “wobbly “ afterwards and had a cuppa and a biscuit. I’m still bleeding and it’s day 10 but it is easing now with a few cramps. I can cope well with pain, but the paracetamol advice (on the leaflet I received ) to take an hour beforehand was pretty useless. I was treated with respect and dignity, but possibly could have been offered pain relief or a GA,  although I didn’t think it was warranted for myself at any rate. A decision to have a GA wouldn't be down to the staff in clinic anyway, that   would possibly be down to hospital policy and consultant.

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Edited by Dagg

Hi @Dagg Thank you so much for sharing your experience and the broadly very supportive approach at St James’. If you’d like to, Care Opinion are a good way of reporting back to service providers, positive (and indeed negative) feedback. It’s great to know that good practice is being applied 

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Having gone through the procedure myself, I fiind these posts when they are comparing hysteroscopy to "period pain" hard to believe, especially because that is the narrative used by the NHS. Unbelievable... 

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