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Painful hysteroscopy



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Horrendous experience, so awful for you. And awful that others are likely to be suffering without the change in attitude and approach that are needed. 

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I had a total of 4 hysteroscopy. 3 were without any anaesthetisia, just ibuprofen and paracetamol taken an hour before the procedure. Just to tell that the pain isn't like a period cramp, and I also have endometriosis and I believe I would know a pain.

The first one was with the removal of the polyps. The experience was painful and people where keep on talking stuff that didn't make sense, probably to make me more relaxed. Second time the doctor just looked, said he could not see any polyps, but the pain from it was more intense than the pain I experienced with the first one. Plus he talked a lot with his team about other patients that had the same issues and completely ignoring me, I felt like I was at the vet. The third was painful again, they said they only see a bump that would go away at my next period. This procedures where always accompanied by the irritating question if I want a Mirena coil. I mean I was doing all this procedures to get pregnant, asking me that was really annoying. The lady with the ultrasounds always told me she can see the polyps clearly, she even joked saying that only if you were blind you wouldn't see them.

My last intervention was done under GA and was done because of reacurance of the polyps. Till today I don't have a report of what exactly was done apart from hysteroscopy and polypectomy. This time I was shocked with the GA, I woke up trying to breath and felt I don't have enough air, literally felt I was resurrected. I felt dizzy and nauseous for almost a month. The vein where they installed the cannula got hard and still I have the small lump painful at touch. My next appointment is in June so no other follow up except the next day phone call. They also removed 4 bigger polyps and few small ones. To be honest I didn't experience any pain after surgery, although they said I would and I can take paracetamol for that. My big problem was recovering after GA, I guess it is not for me.

 

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Edited by Eliza

Thanks @Eliza for sharing your distressing and painful experience. We’ve just published an updated blog about why change is urgently needed and hope the continued reporting of personal experiences with the policy influencing will drive the improvements needed. 

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The blog I referred to is here  https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/hysteroscopy-6-calls-for-action-to-prevent-avoidable-harm-r8848/

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I too had a traumatic experience and until reading these posts didn’t appreciate how many woman also felt like I did.

I struggled with a hysteroscopy in an outpatient environment. They were able to diagnose uterine polyps that were causing my irregular bleeding. They couldn’t complete the treatment at the first appointment as my care had been outsourced and there wasn’t provision to complete the extra treatment required. As I had struggled with the pain I was told the next appointment would involve a general anaesthetic.

On arrival to my follow up appointment I was consented a local anaesthetist for the procedure I knew I’d already had. There was no record of the procedure I’d already undergone and the findings and no record of how I’d struggled to cope with the pain. I was told that if he found the same things during this hysteroscopy they would remove the polyp there and then…. Not wanting to be cancelled and have to wait longer I agreed.

The pain was unbearable … a struggled to cope, the surgeon had to stop to ask me to try and relax to allow him to continue. 
 

I’d been offered a GA and I wish I’d declined consent to continue… I certainly would not consent to a local if I required further intervention.

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Hello @Beckyish and very sorry to hear of your experience. It’s ghastly and all the more shocking for you not being given sufficient information to make an informed decision to consent to treatment, something that is your legal right. I shudder at your testimony ‘The pain was unbearable … a struggled to cope, the surgeon had to stop to ask me to try and relax to allow him to continue.’ Sounds absolutely barbaric.

Thank you for sharing your insights. We are collating these experiences to press ahead the need for reform, see our call for action blog, details below. It also links to the CAPH, a campaign and support group who you may wish to get in touch with, lovely women and we support them as much as we can. 
 

Thank you again for sharing 

https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/hysteroscopy-6-calls-for-action-to-prevent-avoidable-harm-r8848/

 

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I have had at least 3 hysteroscopes in my adult life. All painful .. most recent was for biopsy and insertion of coil. Outpatient setting in gynae type chair with 3 nurses and the surgeon. The biopsy took so long with excruciating pain and  was offered gas & air which did not resolve the discomfort or distress. Biopsy done and had to abandon the coil fitting. Was very distressed and upset after procedure. I felt like the staff knew it was going to be painful but they need to get through the list. The senior nurse warned me that it might not be possible to fit the coil due to possible discomfort. I often wonder that as I have not had children that opening the cervix is very painful? Surely there must be a relaxant along with analgesia that could be used to reduce pain and distress.

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Sorry Tricia to hear of your experience and the pain. It's definitely too often the case that women are not given information in advance on the levels of pain likely or the pain relief available; and it's their right to chose. Without this, we consider its not informed consent.

@Katharine Tylko and colleagues at CAPH are more up on the reseach that me but it's clear that much more research is needed to better understand the risk factors for women. It does seem that not having a vaginal birth may be a contributory factor. 

Thank you for sharing your experience. We refer to these testimonies in our camapiagning and awareness raising so they do make a difference. Helen

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Thank you @HelenH for the kind words.  Am so sorry that despite all the campaigning by Patient Safety Learning plus the Campaign Against Painful Hysteroscopy this scandal of excruciatingly painful gynae procedures continues.  There's hope on the horizon:   Senior gynaecologist Dr Gail Busby has changed her practice to ensure all hysteroscopy patients are offered from a general anaesthetic from the word go.  Dr Busby has produced a 2 hour webinar in which a Vice President of the Royal College of Anaesthetists - Dr Helgi Johannsson - outlines (31 minutes in) how consultant gynaecologists could easily be taught to adminster midazolam + fentanyl as 'light IV sedation with analgesia' for hysteroscopy, in the same way that gastro-intestinal consultants routinely offer NHS patients IV sedation for colonoscopy/gastroscopy.  Here's the webinar:

  Meanwhile, please if you'd like to join the closed Facebook Action/Support group of the Campaign against Painful Hysteroscopy please send a FB friend request to Katharine Tylko (not a medic, just an admin) and I'll add you to the group.

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I’m so sorry to hear this. I, too have not had children, had a horrendous, traumatic OPH experience, and as far as I am concerned, this made OPH absolutely inappropriate, along with a few other contraindications. As a retired RN, I really don’t know how the perpetrators can sleep at night.

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Hi @Exonian That sounds ghastly, so sorry to hear. And being a nurse, you’ll be even more aghast at how awful it is that women’s pain is ignored or minimised. Something that many women are understandably shocked about. If there was something that you’d want to share your reflections as a patient and a professional, we’d welcome that on the hub. Thank you again, sharing your insights, Helen 

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Thank you, Helen, and yes, it was horrendous. My experience was all the more shocking when I was gaslighted and it was inferred that my experience, which led to a vasovagal episode thanks to the unbearable degree of pain inflicted on me, was as rare as hen’s teeth. I was also treated as if it was my fault, and definitely as a nuisance.  Because the gaslighting was so successful, I didn’t complain. I didn't find out how common my experience was until I read an article in a national newspaper that mentioned CAPH, some years later. My barbaric procedure was in 2006 and I can never forget it. When I was nursing, my special interest was pain relief, and I was horrified by the fact that far too many patients did not have their pain dealt with effectively. I had to try and educate the idiots who came out with “ but they might get addicted ”, particularly regarding the use of opiates when folks were dying. Pain relief in palliative care has improved considerably, but in other areas it has clearly got far, far worse. I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.

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Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

 

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2 hours ago, HelenH said:

Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

 

I have not been able to consent to medical procedures since my hysteroscopy in 2020, including cervical screening. I didn't complete the bowel screening kit either in case I needed to go for a follow up - all because of the attitude of the hysteroscopy staff. Even Covid vaccination was a nightmare - my autumn vaccine took nearly 3 hours to complete due to time it took to trust the staff. Hysteroscopy should be banned in my opinion.

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Hi @Carrie So sorry to hear of your experience. Absolutely; the patient safety impact casts a long shadow, much greater harm that the awful pain experienced. 

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On 08/02/2020 at 07:58, 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/

I don't think this is just an NHS procedural issue, I had mine in Canada and it was the same.  The woman who went in before me was screaming like she was being slaughtered! (just what I wanted to hear prior to my procedure) I have never heard anything like it.  I found the procedure very painful but obviously not on the same level as the woman before me, I did take the ibuprofen before (but I took it 5 hours before, and again an hour before so whether this helped a little I don't know).  It certainly shouldn't be a procedure without appropriate pain relief, I have had a endoscopy without sedative, and now you always get sedated, so why not with this awful procedure!

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Hi @poolsadie

sadly you’re absolutely right. This doesn’t seem restricted to the UK by any means. What a gruesome experience you had, yourself and also the poor woman before you. Thanks for sharing and being part of the awareness raising and campaigning. Women must have information to make informed consent and access to pain relief. 
Helen

Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

 

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Awful isn't it? Sorry you've suffered too.  Evidently we're all so keen to get back to our childcare duties, we don't want anaesthetic.  There is a ridiculous survey by  the British Society for Gynaecological Endoscopy which claims that over 90% of women having this procedure would have it the same way if they needed it again, even the ones experiencing severe pain. There were no alternatives offered on the questionnaire.  Just laughable and this is now being used as the standard for benchmarking!  We just have to keep on making a noise to bring about change.  Have you seen the Campaign for Painful Hysteroscopy facebook page and website? (https://www.hysteroscopyaction.org.uk/)  They are also very active on Twitter @HysteroscopyA - do join in!  They have done some incredible work collecting data etc., and have already brought about changes in patient info leaflets.  A few years ago, pain wasn't acknowledged at all! 

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Heartily endorse the great people at CAPH, terrific campaigners and providing compassionate support to so many sufferers 

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Hi all, I’ve been reading this thread and I wanted to chip in. 
 

I recently had a hysteroscopy and myosurepolectomy procedure done.

I had no pain at all and the experience was really good. I was given a local anaesthetic and the procedure was carried out through Spire healthcare in Leicester. I watched the procedure on the screen and found it quite fascinating. There was no pain afterwards and very minimal spotting.

Im sad to hear about all your experiences but there are definitely places that do this procedure very well.

Hope this helps 😃 

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I have recently been told that I have suspected PCOS, and part of this journey involved having a hysteroscopy and a hormonal IUD fitted in the same appointment. 

The information leaflet that I was given prior to my appointment told me to expect period like pain, and to take paracetamol 30 minutes before my appointment, which I did. I’d like to mention that I’ve always had a high tolerance for pain, and am not one to make a fuss or cry usually.


My appointment was 6:30pm, and I was not given any medication, local anaesthetic, or gas and air. I was told that the paracetamol I had taken would be all that I need. They had a nurse stand by my head talking to me, I suspect to distract me.


The procedure was very painful, and despite my efforts to stay quiet, I found myself crying out in pain a few times. By the time they were done I was feeling pretty faint and shake, and I was in pain. I mentioned this to the consultant and I was told that I was fine, told to re-dress, and sent home.


As I arrived back to my car, the pain was really  ramping up. I was experiencing extreme cramps, and bleeding heavily. On the drive home I experienced pain I had never felt before. It was hitting me in waves, radiating around my back and down my legs, and made me extremely worried about if I would make it home safely. I was crying from the pain, and calling out. When I got home I threw up twice from the pain, could barely stand, and my husband almost called for an ambulance in worry. This intense pain continued for the evening, and into the night.


By the morning, it had reduced to just bad period type cramps, and a week later the pain had gone.


I can’t help but feel that this is another example of women’s pain that is not taken seriously. I do not think that it was safe to send me home when they did, or for me to drive. The letter that the consultant wrote up about the procedure (later sent to both myself and my GP) says that I “handled the procedure well” and “experienced very little pain”, which simply is not the truth and there is no way he reasonably believed that from my behaviour and what I had said. 

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@EmilyGee I feel so sad you went through this in so much pain. I feel you are totally correct that you shouldn’t have been sent home like that. I’m surprised you didn’t have at least a local anaesthetic during the procedure. 
 

My experience seems to be very rare but it shouldn’t be. These procedures can be carried out well and with minimal pain. Is it cost related? Do they do it on the cheap? By not giving anaesthesia I mean? 
 

It’s certainly been an eye opener listening to other experiences and I hope there’s a breakthrough for women one day 🤞

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On 24/07/2023 at 20:01, NickyG said:

@EmilyGee I feel so sad you went through this in so much pain. I feel you are totally correct that you shouldn’t have been sent home like that. I’m surprised you didn’t have at least a local anaesthetic during the procedure. 
 

My experience seems to be very rare but it shouldn’t be. These procedures can be carried out well and with minimal pain. Is it cost related? Do they do it on the cheap? By not giving anaesthesia I mean? 
 

It’s certainly been an eye opener listening to other experiences and I hope there’s a breakthrough for women one day 🤞

I think that you may find that most of us who experience painful hysteroscopies do so at a NHS hospital where it is usual not to be offered any pain relief. Those of us who actually received a patient information leaflet are advised that it's just like period pain and we may want to take a couple of paracetamol prior to the procedure. Some of us have a hysteroscopy sprung on us after  having an ultrasound scan and are not even aware of what the procedure we experience actually is. 

Sadly it does all seem to come down to cost,  but it should not mean that women who can't afford private health care should suffer unduly and, who knows, may die as a result of not returning for any further treatment in the light of their painful experience. 

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