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Painful hysteroscopy

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I'd very respectfully say there's masses and masses of research into outpatient hysteroscopy pain.  The Campaign Against Painful Hysteroscopy has been in existence for over 7 years.  We've read several hundred papers and audits on outpatient hysteroscopy pain.  The most recent survey of 5,000+ patients done by the British Society for Gynaecological Endoscopy showed a mean pain score of 5.2/10.  Individual hospitals are currently reporting 1 in 3 outpatient hysteroscopies as causing SEVERE pain of 7/10 or more.   The Royal College of Obstetricians & Gynaecologists have produced a leaflet (with input from our campaign) that lists some of the well-known risk factors for severe pain, e.g. previous traumatic gynae procedures; severe period pain; anxiety/depression.  Very sadly, because of a shortage of 1,400 anaesthetists in the NHS, most women are being put through Trial by Outpatient Hysteroscopy and only when the pain is unbearable are they offered general/regional anaesthetic or IV sedation with analgesia.  It's a scandal.

There are detailed Cochrane reviews which clearly explain the innervation of the vagina, cervical canal and uterus.  There are different types of nerves all over the place, including at the top of the womb where the biopsies are taken.  Hysteroscopy is inherently painful.  For it to be minimally painful there must be 1) careful selection of patients, 2) modern thin scopes and fluid management systems, 3) a highly trained, experienced and compassionate team.  Very sadly it's uncommon that all 3 factors are in place.  Women who haven't had a vaginal delivery or who are past the menopause have a much narrower cervical canal than a woman who has recently had a baby.  Hysteroscopists know that dilating the canal will be extremely painful - just like childbirth!  Unfortunately, fewer and fewer gynaecologists are prepared (or allowed) to take the time needed to do pain-free injections around the cervix.  Many prefer not to give an injection because this can produce a vaso-vagal reaction - but also because it takes up precious time.  So a political decision has been taken by members of the British Society for Gynaecological Endoscopy to promote routine conveyor belt  outpatient hysteroscopy without pre-op assessment and therefore with only over-the-counter medication from home (which will not touch the severe pain experienced by 1 in 3). 

We're campaigning for INFORMED CHOICE.  At the moment 2 in 3 women will not have severe pain during an outpatient hysteroscopy.  The problem is that NHS Trusts are not being truthful with patients and are not warning them of the risk of severe pain and of the well-known risk factors.  They are only mentioning 'mild discomfort'.  

We want every woman to be able to choose the pain-control strategy that's best for her as an individual - from 'vocal local' hairdresser chit-chat; entonox; penthrox (green whistle); local anaesthetic; spinal anaesthetic; general anaesthetic; IV 'conscious' sedation with anaesthesia.   Some people are quite happy to be awake and can tolerate brief acute pain.  Other people find the stirrups, the scope, dilators and blood on the floor totally gruesome.   

Let's hope the long-awaited Women's Health Strategy finally respects a woman's right not to be sexually brutalised during a medical procedure.

 

snip - Lyn Brown Westminster Hall 6 July 2022.JPG

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Thx for sharing. You’re right, it doesn’t seem to be getting better from the many testimonies shared with us. Barbaric and misogynistic. I’m raising with the newly appointed Patient Safety Commissioner 

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After having my own horror story last October, which I’ve already documented here, I’ve finally contacted PALS at my local hospital where it happened. I’ve asked to make a formal complaint and apparently someone will be getting in touch soon. I feel emboldened by all the stories I’ve read here and elsewhere, plus of course the bigger hysteroscopy campaign. I’ll let you know what happens!

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Hi everyone,

I've recently had a post-menopausal bleed and reluctantly visited my GP today.

We had an discussion around the next steps and I've opted for ultra sound scans which, having had before, I know I am comfortable with.

I have stressed to my GP that I will never have another hysteroscopy again, not even under general aesthetic, and she has accepted my decision.

Although she did mention that I would have to have that discussion with the gynaecologist at the scan appointment, to which I replied that there will not be a discussion as I have already made my mind up.

Why will I never have one again? because of my traumatic and painful experience from my first hysteroscopy.

Well done (not) that gynaecologist!  

I will be taking along the green top guidelines for hysteroscopy along with me to the appointment in case someone need reminding of their responsibilities and my rights.

Take care everyone xx

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Hello Carrie - It's your body so it's your choice what happens to it.  Having said that,  I'd hate the Campaign Against Painful Hysteroscopy to prevent anyone's cancer from being diagnosed early.  Hysteroscopy is currently the best test to rule out womb cancer - but there are other ways of doing it than just outpatients or general anaesthetic.   I'm not a doctor so can't give medical advice but I can say that some hospitals have super-modern ultra-sound machines and I would ask about these.  Also, please ask about the options of spinal anaesthesia/ epidural/ MRI and the ArquerDX urine test for womb cancer.  I just want to make sure that the unlikely presence of womb cancer gets ruled out and that an explanation is found for the bleeding.  Am so sorry you've got caught up in this.

   

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Hi @CarrieThat's so horrible, that the pain and trauma of a past experience is so terrifying to consider, that future diagnostic and treatments options just can't be coped with. 

Wise words @Katharine Tylko as ever.

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16 hours ago, Katharine Tylko said:

I'd very respectfully say there's masses and masses of research into outpatient hysteroscopy pain.  The Campaign Against Painful Hysteroscopy has been in existence for over 7 years.  We've read several hundred papers and audits on outpatient hysteroscopy pain.  The most recent survey of 5,000+ patients done by the British Society for Gynaecological Endoscopy showed a mean pain score of 5.2/10.  Individual hospitals are currently reporting 1 in 3 outpatient hysteroscopies as causing SEVERE pain of 7/10 or more.   The Royal College of Obstetricians & Gynaecologists have produced a leaflet (with input from our campaign) that lists some of the well-known risk factors for severe pain, e.g. previous traumatic gynae procedures; severe period pain; anxiety/depression.  Very sadly, because of a shortage of 1,400 anaesthetists in the NHS, most women are being put through Trial by Outpatient Hysteroscopy and only when the pain is unbearable are they offered general/regional anaesthetic or IV sedation with analgesia.  It's a scandal.

There are detailed Cochrane reviews which clearly explain the innervation of the vagina, cervical canal and uterus.  There are different types of nerves all over the place, including at the top of the womb where the biopsies are taken.  Hysteroscopy is inherently painful.  For it to be minimally painful there must be 1) careful selection of patients, 2) modern thin scopes and fluid management systems, 3) a highly trained, experienced and compassionate team.  Very sadly it's uncommon that all 3 factors are in place.  Women who haven't had a vaginal delivery or who are past the menopause have a much narrower cervical canal than a woman who has recently had a baby.  Hysteroscopists know that dilating the canal will be extremely painful - just like childbirth!  Unfortunately, fewer and fewer gynaecologists are prepared (or allowed) to take the time needed to do pain-free injections around the cervix.  Many prefer not to give an injection because this can produce a vaso-vagal reaction - but also because it takes up precious time.  So a political decision has been taken by members of the British Society for Gynaecological Endoscopy to promote routine conveyor belt  outpatient hysteroscopy without pre-op assessment and therefore with only over-the-counter medication from home (which will not touch the severe pain experienced by 1 in 3). 

We're campaigning for INFORMED CHOICE.  At the moment 2 in 3 women will not have severe pain during an outpatient hysteroscopy.  The problem is that NHS Trusts are not being truthful with patients and are not warning them of the risk of severe pain and of the well-known risk factors.  They are only mentioning 'mild discomfort'.  

We want every woman to be able to choose the pain-control strategy that's best for her as an individual - from 'vocal local' hairdresser chit-chat; entonox; penthrox (green whistle); local anaesthetic; spinal anaesthetic; general anaesthetic; IV 'conscious' sedation with anaesthesia.   Some people are quite happy to be awake and can tolerate brief acute pain.  Other people find the stirrups, the scope, dilators and blood on the floor totally gruesome.   

Let's hope the long-awaited Women's Health Strategy finally respects a woman's right not to be sexually brutalised during a medical procedure.

 

snip - Lyn Brown Westminster Hall 6 July 2022.JPG

Very well summarised, Katharine.  As far as I can see from reading peoples ongoing horror stories about outpatient hysteroscopy, nothing has changed in the way women are tortured and gaslighted since I had my excruciatingly painful procedure about 9 years ago.  What has changed is the RCOG and BSGE have acknowledged that the procedure is severely painful for 1 in 3 women and that women should be told this and offered GA if that's their preference.  What hasn't changed is the culture of lying to women about the pain, ignoring the updated guidelines and therefore denying women their rights and their ability to give informed consent, not using RCOG patient information (presumably because they want to push women through on the OPH conveyor belt), and the unfeeling attitude of the medical staff who continue with procedures even when women are fainting, screaming, shouting, asking them to stop.  "Nearly over" or "just a few seconds more" is not acceptable when a woman has endured more than enough pain already!  They should hang their heads in shame!  Surely the Women's Health Strategy can't ignore this horrendous state of affairs!

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49 minutes ago, Katharine Tylko said:

Hello Carrie - It's your body so it's your choice what happens to it.  Having said that,  I'd hate the Campaign Against Painful Hysteroscopy to prevent anyone's cancer from being diagnosed early.  Hysteroscopy is currently the best test to rule out womb cancer - but there are other ways of doing it than just outpatients or general anaesthetic.   I'm not a doctor so can't give medical advice but I can say that some hospitals have super-modern ultra-sound machines and I would ask about these.  Also, please ask about the options of spinal anaesthesia/ epidural/ MRI and the ArquerDX urine test for womb cancer.  I just want to make sure that the unlikely presence of womb cancer gets ruled out and that an explanation is found for the bleeding.  Am so sorry you've got caught up in this.

   

Hello Katherine,

It's not the Campaign Against Painful Hysteroscopy that's preventing me from having the procedure, it's having a personal barbaric experience of it myself.

It may be the best procedure for ruling out womb cancer, but if women can't tolerate it due to lack of pain management then the procedure is useless.

I do wonder how many women have said 'no' to having a second or more hysteroscopies because of previous experience??

Gynaecologists need to remember that they do not have a second chance to make a good first impression!

Brilliant work being done by the campaign - great to be reassured that I'm not the only woman who has experienced this. Thank you for all your hard work - so appreciated!

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19 minutes ago, Carrie said:

Hello Katherine,

It's not the Campaign Against Painful Hysteroscopy that's preventing me from having the procedure, it's having a personal barbaric experience of it myself.

It may be the best procedure for ruling out womb cancer, but if women can't tolerate it due to lack of pain management then the procedure is useless.

I do wonder how many women have said 'no' to having a second or more hysteroscopies because of previous experience??

Gynaecologists need to remember that they do not have a second chance to make a good first impression!

Brilliant work being done by the campaign - great to be reassured that I'm not the only woman who has experienced this. Thank you for all your hard work - so appreciated!

Carrie, my outpatient procedure failed because of the severe pain - I had a polyp they couldn't remove although they did manage to obtain enough tissue for a biopsy.  I had another procedure a short time afterwards under a general anaesthetic - the experience couldn't have been more different.  No pain, knew nothing about it, and minimal pain for a short time afterwards. The gynaecologist I saw was amazed the outpatient procedure had occurred - lovely team of people who looked after me, chat with anaesthetist beforehand.  Just writing this, in case it is helpful for you or other women in the same position.

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Guest Sarah Jane
Guest Sarah Jane

Hi Everyone. I had a Hysteroscopy last night around 6.45pm. I was terrified as I did not want a GA after my aunt passed away from an Aneasthetic during a gall bladder op. At the age of 46 I found out I was pregnant and at 12 weeks was advised it was a missed miscarriage. To cut a long story short I ended up in hospital after the medical management of miscarriage went wrong. Then for 4 weeks after I was having weekly scans in which they were telling me there was 20.3mm of product left. I then demanded antibiotics, which were reluctantly given to me and told to do a pregnancy test the next week. It said negative, so the NHS washed their hands of me although I hadn't passed the said product. My bleeding was off and on and after having a missed miscarriage 11 years ago and bleeding for 3 months then them finding tissue I just wanted to move on and get it removed and get my life back. My boss suggested I use our health care through work, which led to speaking to a consultant, having a ultrasound and then another discussion took place. So they advised it was either RPOC, blood clot or Polyp. They said it had to be carried out under GA to which I was devastated I just wanted to be awake. They you'd mecit would be too painful and they would look after me and make sure I would wake up. So I had  the procedure. Afterwards the consultant showed me photos and it was a polyp that was nestled in with one of my Fibroids. They removed it and took an endometrial biopsy. I feel fine this morning. Bleeding is minimal and I am so glad it was GA. I as many others probably didn't want to read in depth about a Endoscopy as sometimes the fear is worse than the procedure. Every time I have had to have procedures done in the past I have demanded to be awake. This time they said no, and I am so so glad they did today. I think unless there is a real medical reason it should be done GA as reading what my fellow ladies have gone through on this thread fills me with dread at what I'd have gone through if I'd had my own way and been awake. I'm sorry to harp on but I would definitely recommend it being GA. Thank you for reading and I hope this helps make a decision for people frightened of or never had a GA. 

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Do you know what is also awful about this? For me it has meant that having something else relatively minor done ‘down there’ has inadvertently turned into a nightmare. Yesterday I had what turned out to be a tiny polyp removed from my cervix. The procedure ended up being fine, apart from my general vaginismus with the speculum. Before she started the procedure I had explained about my awful hysteroscopy last year and then some major anxiety kicked in and I went to pieces. The doctor and supporting nurse were absolutely wonderful, gave me time to pull myself together, talked to me, didn’t rush me. Their care couldn’t have been better. It was all me and the memory of what happened. I’ve already submitted a formal complaint to my local PALS about the hysteroscopy and they were very interested to know more. But now the original event is triggering me and how can that be right?

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Edited by chopparoberts Wrong word

I had an outpatient hysteroscopy at Treliske Hospital in Cornwall. I was dreading it due to concerns about pain, but I found the procedure was fine in my case. I experienced only discomfort and no pain, even when a biopsy was taken. The surgeon was very careful and skillful and he did give me a local anaesthetic injection into the cervix, so I am sure that made a difference. I had taken Paracetamol and Ibuprofen an hour before. The nurses were kind and reassuring, and they and the surgeon chatted to me during the procedure to keep me calm and distracted. I have say I am extremely impressed by the team at RCHT Cornwall and can honestly say the procedure was only uncomfortable at times and not painful or traumatic at all. I wanted to share this in case it helps anyone worrying about undergoing a hysteroscopy. FYI I am aged 54, perimenopausal, on low-dose HRT, never had children. Not sure if any of those factors make a difference. 

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Hi @Jules Gabrielle That's great to hear. What a positive experience with caring staff. Thank you for sharing.

 

If you'd like to, Care Opinion are a fantastic organisation for giving feedback to NHS organisations. The feedback is available to share with individual staff members and in these difficult times, that's always great to hear

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I was recently referred on the 2 week potential cancer pathway after a bleed 6 years post menopause. Within a week I had an internal ultrasound which was fine procedure wise but my womb line is a bit thick at 4.7 mm so I was phoned on same day as the ultra sound with an appointment for hysteroscopy.  I informed the nurse on the phone that after a hysteroscopy in 2016 I would be unable to tolerate a walk in appointment and would need GA.  She said I would still need to see the consultant face to face and go from there…I feel that this wastes valuable time when a hysteroscopy has been indicated for diagnosis.  Anyway saw consultant 2 weeks ago.  Saw chair set up, listened to consultant outline the process. Informed consultant that my mum had aggressive cancer at aged 52 all was noted. Also informed her that I had endured an extremely painful hysteroscopy before and I would not be undergoing the procedure today.  She continued to take a few notes and suggested that I may change my mind as there is a wait for GA hysteroscopy I said no I was not prepared to endure the procedure which was to include a biopsy in those circumstances. Sentences like…it’s just like a smear test…you’ve had children etc were uttered but I refused. I was finally dismissed to a nurse to record BMI with the doctor completing a pink GA referral form.  I felt gas lighted and a bit panicked knowing that now I have a wait for the procedure.  I wonder how long women are waiting from seeing consultant to getting the GA hysteroscopy…I realise there may be regional differences. I’ve even considered going privately but the cost is obviously a big consideration, also I enquired and it could be 6 weeks until actual procedure.  Also if I need treatment would I be able to go back to nhs or be stuck in the private loop… Like everyone I just want to know what’s wrong  and deal with it.  Apologies for the waffle.

 

 

 

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Don’t apologise. What your experience illustrates is the complete lack of respect, indeed I would say utter contempt with which women are treated when they “dare” to disagree with medical staff trying to railroad them into having office hysteroscopies, when they stand their ground. The gaslighting is appalling, but appears to be standard. Basically, medical staff are behaving unprofessionally, it seems on a daily basis. If I ever needed another hysteroscopy.       ( and I now don’t believe that having breakthrough bleeding whilst taking HRT was an indication for being subjected to one ), hell would freeze over before I would have one without a GA. Whatever happens, stand your ground. I’m not sure if you’ve heard of it, but there is a Campaign Against Painful Hysteroscopy that many of us have joined after being subjected to barbaric treatment involving excruciating pain, inexcusable in the 21st century.

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Awful to hear your experience and thank you for sharing @Teresa1. I agree with @Exonian. The Campaign is fantastic and unites so many women who have had dreadful experiences. It is gaslighting when you’re prevented/persuaded not to have the option of GA that is clearly part of RCOG guidance. Services should be there to support women’s choice. It’s their right.

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Dear Teresa1 @Teresa1

I apologise for only now seeing your post.  I hope very much that the situation has been resolved and that you have had the hysteroscopy under general anaesthetic and that all is well. 

Please, if you are still waiting, then I've attached below the statement that the Royal College of Obstetricians & Gynaecologists has published on its website.  Here, the hysteroscopists' professional body - the British Society for Gynaecological Endoscopy - have made it perfectly clear that all women must be given the option of GA/regional A (and if available then IV sedation with analgesia) upfront.    

The RCOG's hysteroscopy leaflet also states that outpatient hysteroscopy probably isn't a good idea for people who've previously had a traumatic gynae procedure. (attached)

Please, if the situation hasn't been resolved and if you're on Facebook, you are very welcome to join the closed Action/Support group of the Campaign Against Painful Hysteroscopy.  To do so please send me - Katharine Tylko - a FB friend request and I'll add you.  I'm not a medic just one of the admin.  Our group cannot give medical advice but we can share our experiences and RCOG/BSGE/NHS info about hysteroscopy protocols.  

All best

Katharine   

 

snip - BSGE 2018 BIG statement yellow.JPG

snip - RCOG OPH PIL good reasons for Alternatives to OP.JPG

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