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Painful hysteroscopy

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I'm very pleased to hear you had a smooth pain-free procedure, Birdy2020!  Excellent!  You clearly had an excellent team looking after you!  What you are saying about your experience is how it should be for all women! 

However, this is far from the case.  We are all different and women don't need to have an underlying health condition to experience severe pain with this procedure.  Research figures show that approximately 30% of women undergoing hysteroscopy in outpatients will experience considerable pain and it is barbaric to carry these out when women are shouting out with pain and fainting, as happens on a daily basis in the UK,  Women are also being lied to by the hospital staff when told that the procedure definitely won't be painful, or will be the same as a smear test or maybe  period "cramps".  I see you took cocodamol and naproxen before your appointment.  Most women are advised to take normal doses of paracetamol and ibuprofen which doesn't seem to touch the pain experienced by some. 

Another factor relating to pain is the type of equipment used in the clinic and the skills of the people carrying out the procedure.  The British Society for Gynaecological Endoscopy (BSGE) acknowledge that training, skills and equipment are all factors relating patients' acceptability of the procedure.

I was post-menopausal when I had this procedure, (not an underlying health condition), which the hospital were aware of.  The pain I experienced was worse than childbirth, leaving me feeling traumatised and violated.  Because of the pain I experienced, the procedure wasn't completed and I had to return for a further hysteroscopy and polyp removal under GA (thankfully I didn't have cancer).  If anaesthetics (eg entonox (gas and air), or sedation as used for dentistry, spinal block) had been available in outpatients this probably wouldn't have been necessary.  I also find I now have no trust in people carrying out further procedures on my body.  I'm not alone with this and there is a risk that women will avoid future visits to hospitals and drs in detriment to their future health.

I now campaign to try and bring about change, so other women won't have the same experience, but will be treated with the dignity and respect afforded to patients undergoing other endoscopy procedures, i.e. being able to give fully informed consent and receive appropriate anaesthetic, if that is what the person would like, not necessarily GA as there are other options as mentioned above.

This is the current RCOG information for women undergoing hysteroscopy:https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy/

and the BSGE issued the following statement to its members: https://www.bsge.org.uk/news/bsge-statement-regarding-outpatient-hysteroscopy/

Best wishes

 

 

 

 

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Hi

Thank you for replying  to my message on here,  I was merely putting my experience to help others like me yesterday not to cause a debate, nor do I want to get into one, i am well aware of why and what the procedure was for and wanted to describe my experience on the hysteroscopy procedure,  it was 100% fine for me and listened to professionals and a consultant skilled in that area to give me exactly that and trusted there guidance and information and trust me I asked many questions before hand and consenting

I am well aware of hospital protocols, luckily having a daughter as a highly skilled nurse who gave me the information needed for me to proceed with the hysteroscopy procedure, im all for woman having choice however until you have this procedure only you can talk  about a good or bad experience ssdly some have experienced bad or suffered for ressons i do not know and and sympathise as I raised in my comment earlier I suffer with anxiety therefore i read all information given and was satisfied. And happy it was dealt with yesterday i wouldn't have wanted to wait wait 2 weeks nor wait for results that would have heightened my anxiety.

I wanted to share a positive experience on here regardless it is only fair we all have a voice and hope my experience encourages others to do the same 🤗

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Hi Birdy - it's great to hear that you had a skilled compassionate team looking after you.  I'm a researcher for the Campaign Against Painful Hysteroscopy.  It's very useful and reassuring for patients to know where in the country there are excellent outpatient hysteroscopy teams.  Please, at some stage, might you consider posting your story anonymously on the independent www.careopinion.org.uk website?   Totally agree with you that all women should be able to make a fully informed choice as to how hysteroscopy - and other gynae procedures - are performed.   

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Hi Kathryn 

Yes of corse absolutely i will gladly share my experience.

Nothing saddens me more for any woman to suffer and have a traumatic experience in this day and age I know how this can affect anyone long term with any  trauma.

I put many objectives on the table to the consultant yesterday i am no push over and whilst the hysteroscopy is not pleasant around dignity etc if there is another way of getting round this procedure I am all for that but for me yesterday it left me feeling a lot of admiration for the team i had with me yesterday practiced skills with reassurance caring respect patience,  and I felt very looked after  and  honestly could not have thanked them enough Kathryn. X

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@Birdy2020 thank you so much for taking the time to share your experience on the hub. Many women, like you, do not experience high levels of pain during hysteroscopy and it is wonderful to hear positive stories. The levels of pain differ so greatly and it can be difficult highlighting the trauma that has been felt by many, without causing anxiety for others, who may not have any difficulty with the procedure. It sounds like, importantly, you felt informed, able to speak up and in safe hands.  

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43 minutes ago, PatientSafetyLearning Team said:

@Birdy2020 thank you so much for taking the time to share your experience on the hub. Many women, like you, do not experience high levels of pain during hysteroscopy and it is wonderful to hear positive stories. The levels of pain differ so greatly and it can be difficult highlighting the trauma that has been felt by many, without causing anxiety for others, who may not have any difficulty with the procedure. It sounds like, importantly, you felt informed, able to speak up and in safe hands.  

Surely all women are entitled to pain free hysteroscopy? 

The problem many of us face is that we don't have the information before the procedure so we can't make an informed choice. Most women don't have relatives working in the NHS who can give them the heads up as to what to ask. And we can't have any anaesthesia or even basic pain relief - and women don't know that this is wrong. Many women are told to take paracetamol or ibuprofen - I wouldn't know how to access cocodamol or naproxen, how do women get hold of this if it helps? 

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Yes access to stronger pain relief is a big problem. Most women don't get honest info about the possibility of experiencing sever to intolerable pain so couldn't know to ask for it. One other big problem is the lack of screening.  I was never a suitable candidate for OPH in the 1st place. No relevant history was taken all the women at my clinic got pushed through trial out patient hysteroscopy whether they were suitable or not, unless they additional information from elsewhere. When it failed like mine predictable did . I was informed that it could be done with a GA. It was too late, the damage was done I find it very difficult to go to any Dr or hospital I need sedation. I have lost trust in all medics with the exception of anaesthetist. Women should not need to be in the know to get pain free treatment.

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Edited by Clarke Typo

I have had a hysteroscopy and freaked myself out beforehand by reading things online and really wish I hadn’t. My first hysteroscopy where my doctor took a biopsy was less painful than some period pains I’ve experienced. Today I had my polyp removed no local anaesthetic used and it was more painful than the first procedure but bearable. I know everyone’s tolerance is different but I really over thought and worried about this procedure based on what I read online. I took paracetamol and ibroprufen beforehand which would have definitely helped so would advise anyone else having this to not freak out as I did, take pain relief beforehand and it’s over fairly quickly. For me I’m glad I didn’t have a general anaesthetic as at the moment with Covid you need to isolate etc and the pain was bearable as an outpatient. Hopefully this helps someone else who’s unsure.

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Thanks @Emmyloow It's good to hear of your experience. We're very keen that all patients have access to advice that can help them make an informed decision. As you say, some women are fine with it and it's important that people aren't unnecessarily concerned. You make a good point about managing the risks and especially in times of covid. Thanks again

 

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Hi Emmyloow  - that's really good that your polypectomy was bearable.  The Campaign Against Painful Hysteroscopy stresses that 75% of patients feel only mild to moderate pain - and some people feel no pain at all.  One way of helping to reassure future patients would be to post your story (can be done anonymously) on www.careopinion.org.uk.  It helps patients to see where the good clinics are.  One of the aims of our campaign is to persuade the NHS to offer IV sedation with painkiller as an option for womb endoscopy.  Then hysteroscopy patients would have the same pain-relief as their brothers and sisters having colonoscopy.   We hope that as soon as effective pain-relief is available for all patients then there won't be any more horror stories to scare people. 

 

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We are currently seeking a couple of patients who would be happy to help us with a hysteroscopy communication piece. It will involve a short video recording via zoom, talking about your experience and also to share any benefits you have found in coming together via this forum and the hub. If you have any questions or would like to take part, please email me at stephanie@patientsafetylearning.org. 

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Hello

I'm sorry to hear that so many women have had such a horrendous experience with hysteroscopy. I had breast cancer and experienced some abnormal bleeding when I came off tamoxifen so I was expedited on a 2 week wait pathway for a diagnostic hysteroscopy to rule out endometrial carcinoma. 

I had the procedure yesterday at Royal Lancaster Infirmary and had no problems with it at all. I was in and out within 20 minutes. It wasn't the most comfortable position in the world to be in (!) and it felt a bit like having a smear test with some extra bits added. In fact, they did a smear while they were at it so I got two for the price of one, lol!  Given that they were putting a camera in my uterus and taking a biopsy, I expected much worse. It was fascinating to look at my endometrium on the screen and the gynaecologist and the two nurses who helped were brilliant. The local anaesthetic stung a bit and the biopsy was a bit painful but not awful. The doctor told me to wiggle my toes when she was about to do something a bit painful and that helped a lot! The nurses were very encouraging and told me how well I was doing. I am also very lucky because my endometrium looked normal so I'm not in a terrible state waiting for the biopsy results as I expect they will be nothing to worry about (how different from breast clinic, where it was obvious from the start that something was horribly wrong).

I was warned about cramping afterwards and some bloody/watery discharge which I was expecting anyway. My tummy is a bit sore today but nowhere near as bad as I was expecting.

So, I would recommend the RLI and Dr Sambrook. She was brilliant.

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Thank you so much for sharing your overall positive experience. So pleased it went well - the advice and support you received seemed spot on. I too am fascinated with seeing bits of me on screen! Fingers crossed for confirmation of a positive result.

I don’t know if you’ve heard of Care Opinion? They’re a great charity and they enable and encourage patient feedback to inform staff - to commend good practice and help identify the need for improvements in services, where needed. In case you’d like to follow up. 

thank you again. Let’s make sure everyone has your experience. Helen 

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Lovely to hear that you had a positive experience and local anaesthetic.

I do hope that everything goes well for you in the future. 

I had to go through the experience, like many women, without any anaesthesia, and taking Ibuprofen didn't help; hence horrific pain. 

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I had a really positive experience with my hysteroscopy. The procedure itself was almost painless, I had some very mild cramping when biopsies were taken (less bad than my usual period pain) and afterwards I had some mild period like cramping. I am usually terrible with pain.

Just wanted to share a positive story.

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That's really good to know there are women having a good hysteroscopy experience.  Just wondering if anyone spoke to you about likelihood of pain or any alternatives to the outpatient procedure without any pain relief, or asked you questions to ensure you weren't in a high risk group for pain in advance of the hysteroscopy.  If they did go through all that with you in line with the RCOG/BSGE guidelines, and you were able to give informed consent, they deserve to know they are getting it right!  Which hospital was it, please.

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They told me in advance that it is generally well tolerated in women who have had children (I have had 2) and that I could have gas and air if I wanted to but I didn't need it. It was Crawley Hospital women's centre, they were so kind and definitely deserve some recognition for a job well done.

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I was booked to have a hysteroscopy and biopsy following a post menopausal bleed. On the day I was also bleeding heavily, so I was advised the hysteroscopy wouldn’t be possible, but the biopsy could still be done. 
There were 2 lovely nurses assisting, and they were obviously trained in distraction techniques as they chatter relentlessly and tried to get me to interact with them. I have never experienced pain like it, I was crying out despite trying to be brave. Beforehand I’d seen  the leaflet and it advised it might be a bit uncomfortable, but this was pain so bad that I was passing out. I was asked if I’d taken any painkillers beforehand and I’d replied that no I hadn’t because I didn’t think I’d need any. I wish that I’d been offered some pain relief or sedation of some variety because I felt traumatised. Afterwards I could hardly walk because I was shaking so much. One of the worst experiences of my life! I do wonder that if this was a procedure that was being done on men whether they’d get away without anaesthetic, sedation or pain relief, and only the best efforts of a couple of nurses to try and distract you. 

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Hi Susie, I'm so sorry to hear of your ghastly experience. How absolutely terrifying for you. It seems clear to me that you weren't given the information you needed to give informed consent or the options for pain relief which should have been available to you.

We've been reflecting the same as you, this does seem to be a gender issue. The recent Cumberlege report 'First Do No Harm' reflects on the patient safety issues that affected women over decades. It's not good enough.

Thanks for sharing your story; further resolve for us to continue supporting patient groups and the campaign to end such barbaric practice. 

@Stephanie O'Donohue

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Hi @SusieL

I really am very sorry to hear of your traumatic experience. The principles of informed consent are that you should be made aware of the Benefits, Risks, Alternatives and what happens if you choose to do Nothing (also known as BRAN). It doesn't sound like you were made aware of the risk of severe pain or given any alternative pain relief options. Have you submitted any feedback to the NHS on your experience? 

You may be interested in our recent blog and video explaining what we have been doing over this past year to work with others and raise our concerns around painful hysteroscopies, and particularly the absence of informed consent. We will continue to call for safer hysteroscopies.

Link below to the recent blog and video:

2020: Raising awareness about painful hysteroscopies

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I just went through this procedure and aside from the excruciating pain,  the insensitivity of the do tor performing the procedure i broke down into tears, screams and wailing.  5 hrs later and im still holding back tears.  I felt violated and i just cant even write the entire experience st this moment.  

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Hello MT

So sorry to hear you've had this awful experience. Unfortunately you are not alone in experiencing severe pain and insensitive treatment and left feeling the way you do.  I do hope you are feeling better today.  Please, if you're on Facebook, the Campaign Against Painful Hysteroscopy has a closed Action/Support group that you are most welcome to join.  If you'd like to do so please send me - Elaine Falkner (with photo of lady with white hair) - a Facebook friend request and I'll add you to the group. 

Best wishes

 

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