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Elliemay

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Everything posted by Elliemay

  1. Community Post
    So sorry to read this Cassandria. I hope you are putting in a complaint when you feel strong enough and have all this behind you. Such a dreadful ordeal. The lack of care and empathy being shown to women in these procedures is astounding. But what makes it worse is how they withhold information about likelihood of pain and deny access to appropriate anaesthetic and blatantly LIE TO US. So professionally unethical! If you haven't already have a look at the Campaign Against Painful Hysteroscopy Facebook and webpage (@HysteroscopyA on twitter ) and Care Opinion. CAPH have a pain survey already completed by over 5000 women who have had dreadful experiences. You are far from alone. Hope you feel better very soon. X
  2. Community Post
    So sorry to hear this EmilyGee. A dreadful experience. The Campaign Against Painful Hysteroscopy is working really hard to get this appalling state of affairs changed and also supporting women who've been through and been harmed by this procedure. If you would like to contact us, we have a public facebook page and also a private one. The webpage is https://www.hysteroscopyaction.org.uk/ https://www.facebook.com/HysteroscopyA
  3. Community Post
    Awful isn't it? Sorry you've suffered too. Evidently we're all so keen to get back to our childcare duties, we don't want anaesthetic. There is a ridiculous survey by the British Society for Gynaecological Endoscopy which claims that over 90% of women having this procedure would have it the same way if they needed it again, even the ones experiencing severe pain. There were no alternatives offered on the questionnaire. Just laughable and this is now being used as the standard for benchmarking! We just have to keep on making a noise to bring about change. Have you seen the Campaign for Painful Hysteroscopy facebook page and website? (https://www.hysteroscopyaction.org.uk/) They are also very active on Twitter @HysteroscopyA - do join in! They have done some incredible work collecting data etc., and have already brought about changes in patient info leaflets. A few years ago, pain wasn't acknowledged at all!
  4. Community Post
    Good to hear you didn't have any problems, Rainyflower - most women are ok with the procedure and it sounds as if you had a good dr for yours. Unfortunately 1 in 3 women experience severe pain in outpatient hysteroscopy procedures, and have procedures that last a lot longer than 2 minutes. Mine was at least 20 minutes, during which time I experienced excruciating pain, felt myself passing out as they tried to get through my cervix ( I was 20 yrs post menopause), the distension fluid for the biopsy procedure to take place felt like a red hot poker being applied to my uterus and up to my ovaries. I wasn't advised to take any painkillers beforehand, and wasn't offered a local anaesthetic into the cervix until it was clear I was in agony. No time was allowed for this to have any effect before they continued. I've never experienced pain like it and I'm not alone with saying it was worse than childbirth. Many women are left with PTSD after this barbaric treatment, often leaving women with wrecked sex lives and relationships. This is the only endoscopy procedure where sedation with analgesia and/or general anaesthetic isn't offered as a matter of course. Strangely, its also the only one that is a woman only procedure. It would never happen to a man!
  5. Community Post
    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.
  6. Community Post
    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!
  7. Community Post
    Hasn't this government just removed our human rights and access to the European Court of Human Rights?
  8. Community Post
    I am so sorry and angry to read about your experience. It is unbelievable that they are carrying out what is actually surgery in outpatients without anaesthetic in 2022, when pain relief is available. I hope you feel better very soon, although I doubt you will be able to forget this barbarity any time soon! There are RCOG and BSGE guidelines for this procedure and this hospital didn't follow them, but that is sadly the case for so many women all over UK. Although you were asked to sign a consent form, this can't possibly be informed consent if you weren't made aware that the procedure can be painful for at least 33% of women and advised that you had other options, ie. having the procedure under GA. https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/outpatient-hysteroscopy/ I'm a member of the private part of support/campaigning group Campaign Against Painful Hysteroscopy. If you think it would be helpful and would like to join us (you will find many who have had similar experiences to you) please send a FB friend request to me Elaine Falkner (holding the black and white cat) and I can invite you to join our private group. Its a very friendly and supportive group. We have members who can advise regarding complaining if that is something you would like to do, many have written to their MPs, and you can follow us on Twitter @HysteroscopyA . You can also post your "story" on https://www.careopinion.org.uk/. This is an account regarding hysteroscopy at Salford Royal from 5 years ago - clearly nothing has changed in that time: https://www.careopinion.org.uk/319772 . Please look after yourself and give yourself time to recover. xx
  9. Community Post
    So sorry to hear you had this experience Sadie. Hope you are ok now.
  10. Community Post
    Hi Martina Bit late in the day to respond but I've only just seen your post, I hope all is progressing well for you and you don't have to wait too long if you decide to have the procedure under GA. Very best wishes, E x
  11. Community Post
    Missy, this is awful - so sorry to hear this. Very pleased to hear you are talking to your GP. Have you told them about the pain you are in? There are a lot of women who have undergone this procedure and had it fail because of pain, and have then gone on to have the procedure under GA. This should be an option for you as it is in the RCOG and BSGE guidelines. The Campaign Against Painful Hysteroscopy has a private group where we can discuss our experiences and support each other. If you would like to join please send a facebook request to Elaine Falkner (I'm the one holding the black and white cat) and I can then invite you to join the group. Best wishes - I hope the next stage is better for you. xx
  12. Community Post
    So sorry to hear this A_P. It's appalling how women are treated with this procedure without adequate or any anaesthetic. Unfortunately you are not the only one to be left with issues requiring counselling or other therapy for PTSD. I hope you can recover from this ordeal very soon. The Campaign Against Painful Hysteroscopy has an private group where we can discuss our experiences and support each other. If you would like to join please send a facebook request to Elaine Falkner (I'm the one holding the black and white cat) and I can then invite you to join the group. It would be helpful if you could message me your name as well if you would like to join us. Best wishes E
  13. Community Post
    Hi Cake So, so pleased to hear you've had a textbook experience of hysteroscopy. It's good to hear that your hospital is following the RCOG guidelines to the letter. Its shocking how many aren't doing this and persuading women to go with outpatient procedures by telling them they'll have to wait a long time for other options, or worse not even telling them there are alternatives. The Campaign Against Painful Hysteroscopy is working with RCOG endeavouring to bring about change so all women are treated as they should be, and not as NHS money and the outdated ideas of gynaecologists regarding pain in hysteroscopy are dictating. You can find CAPH on twitter @HysteroscopyA. Please support if you can. Hope the procedure has good outcomes for you. All the best, Ellie
  14. Community Post
    Sorry Cathryn, I forgot to say I'm the one holding a black and white cat. Elaine
  15. Community Post
    Hello Cathryn, Sorry to hear you had a a bad experience last month. It not good enough is it? If you Google Hysteroscopy on Hansard all Lyn Brown's debate speeches will come up in date order. Regarding making a complaint, if you would like to join the Campaign Against Painful Hysteroscopy's private group, we have several members who have made complaints and could give some pointers on this. If you'd like to join please send me, Elaine Falkner a Facebook friend request, and I can invite you to join the closed hysteroscopy group. Best wishes Elaine
  16. Community Post
    Hi Goldie Locks Its so good to hear you had such wonderful, compassionate care and all went well for you. Also good to know where the good gynae teams are! Gold Star to them! I am a member of the Campaign Against Painful Hysteroscopy which wouldn't be needed if all hospitals were like yours. We do stress that 2 out of 3 women will have no pain or mild to moderate pain. Our intention isn't to frighten people but to remind hospitals to follow the RCOG guidance of offering and providing general anaesthetic from the outset if that's what the woman wants, and stopping the moment the patient is in pain. As you can tell from the previous posts here, that doesn't always happen. Thanks for posting a good experience! Best wishes E
  17. Community Post
    Shell, What has happened to you is dreadful. I can only imagine how you feel. I've sent you a message.
  18. Community Post
    Woody, I'm appalled to hear what has happened to you. It shouldn't be like this. As Exonian has said you are entitled to ask for the procedure under general anaesthetic and I wonder why this hasn't been offered to you and why they think a fourth attempt will be better at a different hospital. I wonder if these are questions you could ask the new consultant. If you would like to join the private facebook group that Exonian has mentioned, please send me a fb friend request (Elaine Falkner - I'm holding a black and white cat) and I can then invite you to join the group where you can get support and input from other women who know about the procedure.
  19. Community Post
    Woody, I'm appalled to hear what has happened to you. It shouldn't be like this. As Exonian has said you are entitled to ask for the procedure under general anaesthetic and I wonder why this hasn't been offered to you and why they think a fourth attempt will be better at a different hospital. I wonder if these are questions you could ask the new consultant. If you would like to join the private facebook group that Exonian has mentioned, please send me a fb friend request (Elaine Falkner - I'm holding a black and white cat) and I can then invite you to join the group where you can get support and input from other women who know about the procedure.
  20. Community Post
    Appalling!! It just goes on and on doesn't it - women being tortured in hysteroscopy procedures carried out in outpatients without anaesthetic. Women are not able to give informed consent to the procedure because information is being withheld from them. The RCOG Patient Information Leaflet state: "You may choose to have the hysteroscopy under general anaesthetic. This will be done in an operating theatre, usually as a daycase procedure." (https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy/ ) but hospital trusts choose not to use this information because it mentions pain and anaesthetic. Women are being lied to when they are told it isn't painful - it is known that 1 in 3 women will experience severe pain and to say that it doesn't matter because it doesn't last long is just negligent! What ever happened to "first do no harm!" How do they get away with it? I am so sorry to read the recent accounts on here. They are truly awful. The Campaign Against Painful Hysteroscopy has been working to bring about change for 7 years now. You can join us on twitter @HysteroscopyA, visit their facebook page at https://www.facebook.com/HysteroscopyA/ or their website at https://www.hysteroscopyaction.org.uk/, or if you feel you need support following your experience and would like to join a private group, please send me a message via facebook - https://www.facebook.com/elaine.falkner.7 . You can also record your experience and name the hospital on https://www.careopinion.org.uk/ anonymously if you prefer, or make a formal complaint to the hospital concerned.
  21. Community Post
    Appalling!! It just goes on and on doesn't it - women being tortured in hysteroscopy procedures carried out in outpatients without anaesthetic. Women are not able to give informed consent to the procedure because information is being withheld from them. The RCOG Patient Information Leaflet state: "You may choose to have the hysteroscopy under general anaesthetic. This will be done in an operating theatre, usually as a daycase procedure." (https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy/ ) but hospital trusts choose not to use this information because it mentions pain and anaesthetic. Women are being lied to when they are told it isn't painful - it is known that 1 in 3 women will experience severe pain and to say that it doesn't matter because it doesn't last long is just negligent! What ever happened to "first do no harm!" How do they get away with it? I am so sorry to read the recent accounts on here. They are truly awful. The Campaign Against Painful Hysteroscopy has been working to bring about change for 7 years now. You can join us on twitter @HysteroscopyA, visit their facebook page at https://www.facebook.com/HysteroscopyA/ or their website at https://www.hysteroscopyaction.org.uk/, or if you feel you need support following your experience and would like to join a private group, please send me a message via facebook - https://www.facebook.com/elaine.falkner.7 . You can also record your experience and name the hospital on https://www.careopinion.org.uk/ anonymously if you prefer, or make a formal complaint to the hospital concerned.
  22. Community Post
    Appalling!! It just goes on and on doesn't it - women being tortured in hysteroscopy procedures carried out in outpatients without anaesthetic. Women are not able to give informed consent to the procedure because information is being withheld from them. The RCOG Patient Information Leaflet state: "You may choose to have the hysteroscopy under general anaesthetic. This will be done in an operating theatre, usually as a daycase procedure." (https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy/ ) but hospital trusts choose not to use this information because it mentions pain and anaesthetic. Women are being lied to when they are told it isn't painful - it is known that 1 in 3 women will experience severe pain and to say that it doesn't matter because it doesn't last long is just negligent! What ever happened to "first do no harm!" How do they get away with it? I am so sorry to read the recent accounts on here. They are truly awful. The Campaign Against Painful Hysteroscopy has been working to bring about change for 7 years now. You can join us on twitter @HysteroscopyA, visit their facebook page at https://www.facebook.com/HysteroscopyA/ or their website at https://www.hysteroscopyaction.org.uk/, or if you feel you need support following your experience and would like to join a private group, please send me a message via facebook - https://www.facebook.com/elaine.falkner.7 . You can also record your experience and name the hospital on https://www.careopinion.org.uk/ anonymously if you prefer, or make a formal complaint to the hospital concerned.
  23. Community Post
    I'm very pleased it went well for you, Sarah. I don't want to rain on your parade but think it might be useful for others to know how your experience might differ to experiences in other hospitals. Sheffield Hallamshire is known to be better than most at managing pain in hysteroscopy with spinal anaesthesia and others including gas and air being available - these aren't available in most hospitals for outpatient hysteroscopy. It is questioned by many gynos as to whether local anaesthetic to the cervix has any effect against pain, but maybe yours team allowed enough time for it to become effective before continuing, something else that often doesn't happen, and were adept in applying this local. They also explained to you that you could stop the procedure if too painful and what would happen if they did - something else that often doesn't happen. A final observation - if GA or spinal is available, why are women being subjected to painful procedures without. Does this happen to men? Best wishes for your future procedures.
  24. Community Post
    The Campaign Against Painful Hysteroscopy hears this all the time - "It was like being tortured by nice people". Regardless of how supportive and kind they were, they should not have let the procedure continue if you were showing signs of severe pain and distress which you clearly were (see below). They do it without anaesthetic to save money. The hospitals aren't paid any more for hysteroscopies for GA in Day wards or conscious sedation with analgesia in OP which requires an anaesthetist, but they are clearly more costly. There seems to be a myth that women can endure pain because of childbirth, periods etc., so ok to do in outpatients. In some clinics gas and air is available and sometimes women are offered local anaesthetic into the cervix, but research shows that this is largely ineffective for pain control. Also the manufacturers of the hysteroscopes use the discomfort/acceptability/cost-saving factors to sell their equipment, thus compounding the myth. They also give free training to hysteroscopists and pay for gynaecology conferences. Below are the key points from the RCOG patient information leaflet. All of this should have been explained to you before the procedure and before you signed the consent form, otherwise it isn't informed consent. Too many gynae depts don't even tell their patients it might be painful, preferring to say you might feel cramping like period pains. Nothing could be further from the truth for so many women. It just destroys trust and many women won't return for more procedures, not even regular smear tests. Sorry, this has turned into a bit of a rant. I had my procedure 8 years ago and become increasingly angry hearing that more and more women are suffering this barbaric procedure in this unnecessary way. I've attached a couple of links below - one is to Care Opinion where you can post anonymously about the hospital and your experience - you'll find a lot of hysteroscopy accounts on there. The other is to CAPH's survey - click on survey on Hysteroscopy Action webpage. If you are on twitter you can follow the campaign @HysteroscopyA. Best wishes for your recovery. https://www.careopinion.org.uk/ https://www.hysteroscopyaction.org.uk/ https://www.rcog.org.uk/en/patients/patient-leaflets/outpatient-hysteroscopy/ Key points Outpatient hysteroscopy (OPH) is a procedure carried out in the outpatient clinic that involves examination of the inside of your uterus (womb) with a thin telescope. There are many reasons why you may be referred for OPH, such as to investigate and/or treat abnormal bleeding, to remove a polyp seen on a scan or to remove a coil with missing threads. The actual procedure usually takes 10–15 minutes. It can take longer if you are having any additional procedures. You may feel pain or discomfort during OPH. It is recommended that you take pain relief 1–2 hours before the appointment. If it is too painful, it is important to let your healthcare professional know as the procedure can be stopped at any time. You may choose to have the hysteroscopy under general anaesthetic. This will be done in an operating theatre, usually as a daycase procedure. Possible risks with hysteroscopy include pain, feeling faint or sick, bleeding, infection and rarely uterine perforation (damage to the wall of the uterus). The risk of uterine perforation is lower during OPH than during hysteroscopy under general anaesthesia.
  25. Community Post
    Hi Dawn, so sorry to hear this has happened to you. What an awful experience. Unfortunately you are far from being alone with feeling extreme pain with hysteroscopy. Research has shown that 1 in 4 women will experience severe pain. I hope this was explained to you before your procedure and you were given the opportunity to have it carried out under general anaesthetic or sedation. The RCOG guidelines state that all of this should be discussed with women prior to the procedure but unfortunately this very often doesn't happen. Also the procedure should have been stopped given the pain and distress you experienced. The Campaign Against Painful Hysteroscopy is working tirelessly to bring about change but its an uphill battle. Men would never be expected to go through a procedure this painful without anaesthetic. Are you on facebook? If so the campaign has a facebook page and from there you can ask to join a private group where women who have had a bad hysteroscopy experience can talk about it and support each other. Or message https://www.hysteroscopyaction.org.uk/contact-us/. I hope you begin to feel better very soon.
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