Katharine Tylko

Excellent article Kath Sansom!   

The same tokenism applies to hysteroscopy. 

Womb endoscopy continues to be hideously painful and traumatic for 1 in 3 because the NHS, the Royal College of Obstetrics & Gynaecology and its little sister the BSGE, keep patients with actual lived experience of painful hysteroscopy out of meetings, consultations and research.   

The hysteroscopy establishment prefers to silence the whistleblowers and pretend that women aren't daily screaming in pain during brutal and medieval endoscopy performed WITHOUT ANAESTHETIC.  

The British Society for Gynaecological Endoscopy REFUSES (under FOIA) to publish the pain scores from its 'bespoke' audit of 77 clinics.  The BSGE falsely prints that most women reported "slight pain".  Yet they state that the mean pain scored is 5.2/10.  They refuse to publish the percentage of women who suffered severe pain.  Clearly they don't want prospective patients to know the actual risk of severe pain during an outpatient hysteroscopy.  And most extraordinarily ... some of the hospitals in the audit only returned ONE patient's survey!

The BSGE exclude the Campaign Against Painful Hysteroscopy from meetings of their Ambulatory Care Network.  Could this be that they would prefer women not to know the real risk of severe pain in outpatients, and therefore not to elect to have hysteroscopy with sedation, regional or general anaesthetic?

Maybe its time for the BSGE to form a James Lind hysteroscopy Research Priority Setting Partnership?   

Prof Emma Crosbie ran a James Lind womb cancer research project at St Mary's Manchester.  Patients, professors, nurses, carers all gathered together to suggest and vote for the 10 most useful research questions.  Then Team Womb at Manchester got to work on answering these questions.  And guess what?  Soon a load of hysteroscopies may be redundant as vaginal swab tests are likely to be declared sensitive and specific enough to identify reliable biomarkers of womb cancer. 

It's time for all gynaecologists to be brave and end tokenism in Patient & Public Involvement.

Am so sorry to read about all the pain and uncertainty that you have endured.  Thank you for posting such a clear and detailed story which explains how gynaecologists were pushing a seemingly trivial operation without consideration of its long term side effects. 

Good to see that the Royal College of Obstetricians & Gynaecologists' patient info leaflet has been adapted by Kingston.  It's truthful about the risk of severe pain during biopsy.   It could be a lot more detailed about the possible need for a paracervical block and the inability to guarantee pain-relief for polypectomy and fibroid removal.  The pain and duration of fibroid removal is played down.   There have been recent reports on Care Opinion of awful hysteroscopy procedures at Kingston.  Training needs to be investigated as does truthful 'shared decision-making'. 

Dr Sundar - I can't thank you and PSL enough!! 

You should get a medal for this. 

You told the truth about outpatient hysteroscopy - and you didn't pretend that "only 3 to 5%" women experience severe pain.

The Campaign Against Painful Hysteroscopy has been inundated by horrific stories of women crying, screaming, fainting or vomiting during OPH and then feeling that it was somehow their fault.

I so hope that the BSGE and RCOG include your truthful evidence in their new hysteroscopy guidelines and patient information. 

Since Montgomery and Cumberlege there is no legal excuse for women not to be warned of the unpredictable risk of severe pain of 7,8,9/10. 

Women should be given the choice of attempting hysteroscopy in outpatient +/- local anaesthetic/ Entonox should they wish, but equally be given the option of timely GA/ spinal anaesthesia/ IV conscious sedation with analgesia.

Thank you for caring and speaking up about the basic human right of not being made to endure agonising and degrading medical treatment when safe alternatives exist.

Katharine

Dear Lisa - this is SUPERB!  Thank you so much for acknowledging gynae pain and the way that women are taught from an early age that they must keep quiet about even white-hot searing pain.  At the Campaign Against Painful Hysteroscopy we're trying to persuade the Department of Health to permit all NHS hysteroscopy patients to choose from a range of pain-control options (including IV sedation, spinal/regional/general anaesthetic) and  not be forced through Trial by Outpatient Hysteroscopy with just 'vocal local'.  @hysteroscopyA www.hysteroscopyaction.org.uk  On Facebook: the Campaign Against Painful Hysteroscopy community plus closed group.  

Good luck in all your work!

Katharine

Thank you so much for wanting to do the very best for patients.  I can't begin to imagine how exhausting it must be to nurse under pandemic conditions when the rules keep changing.  Please don't feel bad about taking some time away to recharge your batteries.  Your health matters above everything.  I do hope that your hospital's management understands that if they want to retain their staff they must support them in every way they can.  You are humans not machines.  Please - what can we patients do to help? 

Please - what can we patients do to ensure that nursing and care staff in future always have effective PPE?  It was wrong that your lives and your families' lives were put into serious danger. 

Have signed and shared the petition.  Thanks very much for letting us know about it.  We patients want to help you front-line staff as much as we possibly can.   Please know that we care about you all and are incredibly grateful for your bravery and unselfishness.   Please, tell us ordinary patients what we can do to help hospital staff and their families.  You are HEROES! 

OMG

I love your emphasis on 'be kind'.  That immediately puts the patient at the centre of their care.  Am writing on behalf of the Campaign Against Painful Hysteroscopy.  Please do you know of any NHS initiatives to enable women to choose safely monitored IV sedation with analgesia for endoscopy of the womb?  It would end an awful lot of suffering.