Katharine Tylko

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.

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   

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.

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.

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. 

Hi HelenB

Am very sorry to hear  you had an awful HOLOGIC Myosure procedure.  Am concerned too that you weren't warned upfront that a typical pain score for Myosure is 7/10.  Please, if it's any use and if you're on Facebook we have a hidden/closed Action/Support group that you're most welcome to join.   If you'd like to do so please send me - Katharine Tylko (one of the admin, not a medic) a Facebook friend request and I'll add you to the group.  

Meanwhile, we have an ongoing anonymous 'dissatisfaction survey' of painful hysteroscopy at https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU

We've amassed 1,500+ awful stories collected to show that excruciatingly painful outpatient hysteroscopy is not the rare occurrence that the British Society for Gynaecological Endoscopy claims. 

Sorry for ranting. 

Updates of our campaigning are at www.hysteroscopyaction.org.uk

Best wihes,

Katharine

Hello Np   - I'm very sorry to hear about the Myosure procedure.  I hope that you will feel a lot better soon and that the memory will fade.  You are absolutely not alone in experiencing severe pain and trauma during an outpatient hysteroscopic procedure .  Please, if it's any use and if you're on Facebook, the Campaign Against Painful Hysteroscopy has a private/hidden Action/Support group you'd be very welcome to join.  If you'd like to do so please send me (Katharine Tylko - one of the admin, not a medic) a FB friend request and I'll add you.  We have an anonymous patient survey if you're interested: https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU 

 A good place to prompt your hospital to offer better pain-relief  is www.careopinion.org.uk   Here one can tell one's story anonymously and sometimes the hospital actually makes improvements.  NHS audits show that 1 in 4 outpatient hysteroscopy patients suffer severe pain. 

However, the British Society for Gynaecological Endoscopy has done its own survey of outpatient hysteroscopy and found that patients rate the care they receive from its members as 9.7/10.   So we have our work cut out to persuade them that patients are suffering unnecessary pain!  (Interestingly, some of the BSGE members only submitted a single survey response.)

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. 

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.   

Hi Alice - I'm Katharine, one of the admin of the Campaign Against Painful Hysteroscopy.  Am not a medic so can't give medical advice but can point you in the direction of medical advice.  You're absolutely not alone in having had previous difficult gynae procedures and wishing to be asleep for a hysteroscopy.

The Royal College of Obstetricians & Gynaecologists has issued a statement saying that even during the pandemic women having hysteroscopy are free to choose GA/IV sedation instead of an outpatient procedure.  (See below)  We know of women who've had GA hysteroscopies during the pandemic but others have been offered IV conscious sedation because there's less risk of potentially spreading any covid19.  IV sedation has worked very well in the past for me for various endoscopies I've needed.

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 - Katharine Tylko - a Facebook friend request and I'll add you to the group. 

If you're not on Facebook, please email me ....@....com and I'll try to help regarding your local hospital.

Can totally understand how scary and horrible the idea of being forced into an unsuitable procedure is.  There are loads of choices of ways of having a hysteroscopy to rule out cancer.  Recently one of our campaign members had a GA arranged under the 2 week-wait rule.  Please don't feel pressurised into something that's medically unsuitable. 

All best,

Katharine 

Thinking aloud ...  Please are there ways of enabling a next-of-kin to say goodbye to a conscious but dying covid-19 patient so that patient doesn't die without family?  

A voice on a phone?  A video on a phone?  A written note (in laminated, sanitised plastic pocked)?  Some form of talisman that the next-of-kin gives the patient when they're taken to hospital? 

As a cancer radiotherapy-survivor I know how comforting it was to carry a small note from my husband into the 'lock-down' radiotherapy rooms.  Obviously during this pandemic safety is paramount but a safe compromise way of farewell would help everyone involved with the death. 

A small update on routine GP-surgery blood tests and injections during COVID-19. 

Some very good local news from Bath and Swindon.

My local GP services are soon to organise 'hot' and 'cold' GP practices.  This means that the risk to presumably covid-19-free patients of picking up the virus and spreading it to their household will be much reduced.  

So for example, I can have my routine B12 jab without a high risk of picking up the virus that's killing people locally and spreading it to a vulnerable asthmatic recovering from cancer. 

Well done our local NHS!

Thanks very much for your comments. 

It's hard to balance conflicting serious risks where information is missing.

Maybe patients could have the option of learning on-line to do their own routine injections and so protect health-care professionals and the general public?

Or maybe army medics could support the district nurses who are needed to care for the seriously ill housebound? 

Above all we need covid-19 testing for ALL health-care workers to reassure patients that GP practices are safe.  

HOW SAFE ARE OUR GP PRACTICES during covid-19?  For the health care professionals, their patients, and families of patients? 

I'm a 65-yr old diabetic needing routine B12 injections.  

My GP tells me to turn up as normal so I don't develop neurological problems. 

I don't think anyone in the practice has been tested for covid-19.

I'm refusing to turn up since I suspect the GP practice to be a covid-19 hot-spot.  I don't want to transmit this virus to my frail, elderly asthmatic husband who's undergone cancer treatment and a lot of surgery.   

I've persuaded the GP to give me a precription for oral B12.

Have I done the right thing? 

How can I help GPs and patients in far worse dilemmas than mine?

Here's the link to the patient info leaflet that the excellent Dr Mary Connor FRCOG (Sheffield Hospital) wrote in conjunction with members of the Campaign Against Painful Hysteroscopy and the RCOG patient info committee: https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy

The leaflet clearly states the risk of severe pain during outpatient hysteroscopy, and lists cohorts of patients at greatest risk.

It says that women may choose to have a GA upfront (so needn't be forced through 'Trial by OP Hysteroscopy').

Unfortunately, responses gained under the Freedom of Info Act and stories told to the campaign show that most NHS hospital Trusts

don't use the RCOG leaflet

don't warn patients of the risk of severe pain

don't offer patients GA or sedation 

don't stop OP hysteroscopy when the patient is in severe pain

Influential hysteroscopists from the British Society for Gynaecological Endoscopy have over the years influenced the outpatient Best Practice Tariff so that hospitals have practically no theatre space or anaesthetists to perform hysteroscopy with GA or sedation.  Training for hysteroscopists is often minimal and they learn on red peppers and conscious patients since high-fidelity simulators are too expensive.

We're the next scandal following vaginal mesh. 

Hysteroscopy patients have a right to ask for general anaesthetic upfront but under-resourced NHS clinics are coercing women into attempting 'Trial by Outpatient Hysteroscopy' first.  One patient describes this as  'torture by nice people'. 

https://www.sbk-healthcare.co.uk/home/title/2428/nhsconference/updating-and-adapting-outpatient-hysteroscopy-(oph)/?fbclid=IwAR1mgXi4QXIe8OjJOHiYRBouFpWx6QCdcHPniVTMBnx7GRKAQYkHa5-X5XY

The Department of Health and the British Society for Gynaecological Endoscopy (BSGE) are heavily promoting outpatient hysteroscopy.

The Dept of Health's long-standing Best Practice Tariff incentivising OP hysteroscopy has meant hospitals have stopped investing in theatre places for hysteroscopy.  Women who ask for GA hysteroscopy go onto a long waiting list.  

Despite the Campaign Against Painful Hysteroscopy's work to give patients their 'Montgomery' legal right to informed choice, and also to improve patient selection and pain-control in outpatients, the Dept of Health continues to hype OPH. 

The attached file is of a workshop to encourage gynaecologists to 'kickstart' outpatient hysteroscopy services on the basis of 'patient feedback'.  

Hmmm.   The Dept of Health and many of the BSGE's hysteroscopists are ignoring or downplaying the excruciatingly painful OPH experienced by far too many patients throughout the NHS.  

The staff at the independent Care Opinion site completely independently of the Campaign Against Painful Hysteroscopy did their own pictorial analysis of the hysteroscopy stories they received.  They concluded the main problem was: PAIN. 

To read some more horror stories from the Care Opinion website demonstrating the lack of safeguards in NHS outpatient hysteroscopy go to: https://www.hysteroscopyaction.org.uk/wp-content/uploads/2018/10/sept-2018.pdf There's also an essay on 'How the NHS gets away with torturing 1 in 4 women'.  

My GP kept delaying referring her patient with womb cancer symptoms for hysteroscopy.  When I finally asked why I wasn't being referred, she explained, "you'd freak out at an NHS gynae clinic".  She knew what experience a childless woman with severe dysmenorrhea could expect.  She told me a general anaesthetic would cost me over a £1,000.  I fought hard over several months and countless medical appointments to be allowed an NHS GA which showed  stage 3c womb cancer.  Fantastic NHS surgical care & masses of radiotherapy worked.  In the local Macmillan gynae cancer support group I help run - over the last 7 years I've yet to meet a woman who had anything other than a 'brutal' outpatient hysteroscopy.  Yes - throughout the NHS some women do have excellent experiences but most clinics are staffed by under-skilled or over-confident operators,  under pressure to perform hysteroscopy as quickly and cheaply as possible.  Yes - there are slighter higher risks when hysteroscopy is performed under GA.  So we need the NHS to fund, train and safely resourced and monitored procedural IV sedation with analgesia for hysteroscopy.  It exists in Sheffield, Newcastle and a few other hospitals.  This would bring the patient experience of endoscopy of the womb in line with endoscopy of the colon, stomach etc.  It would give women the option of having a pain-free and relatively stress-free experience.   We need CHOICE of pain-control according to a woman's preference and medical need.  Not just 'Trial by Outpatient Hysteroscopy' with 'vocal-local' hairdresser chit-chat then tea and biscuit for shock.  Thank you Patient Safety Learning Hub for listening to an all-too common story.