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Katharine Tylko

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Everything posted by Katharine Tylko

  1. Community Post
    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 in
  2. Content Article Comment
    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 e
  3. Content Article Comment
    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 P
  4. Community Post
    Hello Dr Bilas Yes - quite a few NHS hysteroscopy clinics offer patients entonox - but not all. The Campaign Against Painful Hysteroscopy has been lobbying for entonox to be made available in all outpatient hysteroscopy clinics. We know that some women find it helpful during hysteroscopy, particularly if they have used entonox successfully during labour. We campaigners are not medics but we know from our own experiences that entonox helps some women but not all. Personally it did nothing to help me during the excruciatingly painful removal of vaginal vault packing after Sel
  5. Community Post
    It's lovely to hear of another good hysteroscopy where the pain control was planned to suit the patient. Unfortunately the Department of Health, hysteroscope manufacturers and the British Society for Gynaecological Endoscopy currently promote "See & Treat" hysteroscopy without pre-op assessment. This means that most women - including women at high risk of severe pain - are put through a Trial by Outpatient diagnostic Hysteroscopy on just ibuprofen/paracetamol (if they've received a leaflet upfront). The Campaign Against Painful Hysteroscopy is campaigning for fully informed choice o
  6. Community Post
    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
  7. Community Post
    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.
  8. Community Post
    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
  9. Content Article Comment
    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?
  10. Content Article Comment
    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.
  11. Community Post
    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 fa
  12. Community Post
    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!
  13. Community Post
    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.
  14. Community Post
    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 gi
  15. Content Article Comment
    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!
  16. Content Article Comment
    OMG
  17. Content Article Comment
    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.
  18. Community Post
    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 Fre
  19. Community Post
    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'.
  20. Community Post
    https://www.sbk-healthcare.co.uk/home/title/2428/nhsconference/updating-and-adapting-outpatient-hysteroscopy-(oph)/?fbclid=IwAR1mgXi4QXIe8OjJOHiYRBouFpWx6QCdcHPniVTMBnx7GRKAQYkHa5-X5XY
  21. Community Post
    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
  22. Community Post
    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.
  23. Community Post
    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'.
  24. Community Post
    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 -
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