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Painful hysteroscopy

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I was subjected to an excruciating hysteroscopy in outpatients without being made aware of all the pain options. I was denied local analgesia when I asked about it beforehand and told it wouldn't be necessary as the pain would be slight cramping. It wasn't.

I noticed some light spotting about 6 weeks ago. I reported this to my GP, who sent me for an internal ultrasound. This identified slight thickening of the lining of my uterus (7mm), so I was sent for a hysteroscopy at Nevill Hall hospital, in Abergavenny. I received a leaflet in advance, which said 'some patients experience discomfort. If you find the procedure uncomfortable, please discuss this with the clinician'. it also stated that one of the frequent risks was pain. However, on the same page it said 'You will be offered local analgesia', so I didn't worry too much.

When I met the clinician in advance of the procedure, he explained any discomfort would be like period cramps. I asked about pain relief, but he repeated it would just be like period pains, if I experienced any pain at all. As I used to have dreadful period pains, have had coils inserted and removed, and have given birth naturally twice - once without pain relief - I thought I'd be fine with this. I'm usually pretty tough when it comes to pain, in any case. 

When the procedure started, I felt some discomfort when the hysteroscope went through my cervix, and remember saying 'Ow'. Then the most incredible, searing, tearing pain I have ever experienced - I guess it must have been the pressure of the saline. I found the arms of the bed to grab onto, and could hear myself shouting -No no no no no, stop stop stop-. The plan had been to take some pictures, followed by taking a sample of the lining of my uterus lining, but the clinician stopped the procedure having had a look and taken some pictures. They may have spoken to me and asked questions during this time, but I have no recollection of anything except the pain. When I finally opened my eyes, the clinician was nowhere to be seen, and the two nurses were asking if I was OK. I was extremely shaken and very out of it, from the pain and the shock.

After I'd recovered for a few minutes, still with my legs in the supports, and lying back in the examination chair, the nurses told me I should go and get dressed, which I did, very shakily. They then showed me out of the room to the clinician's room opposite. Another doctor was standing in the doorway of his office, and I wasn't asked in, or asked to take a seat. I just stood in the doorway, still dazed and very shaken. The clinician looked up at me from his desk and said everything looked fine and joked that he would give me a 10 year warranty, as all seemed in order. The nurse then pointed me towards the exit door and I was on my way out of the department, to drive myself home. There was no offer of anywhere to sit and recover. I felt a complete wimp, and as if I'd made a terrible fuss about nothing. And very confused. As I mentioned earlier, I'm usually really brave but this was the worst pain I'd ever experienced.

I had phoned the hospital the day before the procedure, as I'd noticed in the patient leaflet that it said I needed someone with me to take me home. The person I spoke to said that was because I would be given local anaesthetic, and if I had an accident on the way home, my car insurance would be invalidated. She said it was at my own risk if I attended on my own and drove myself home. Having driven many times after local anaesthetic, coming home from the dentist, I took the decision to attend the hospital on my own, as it was short notice to find someone to drive the 40 mile round trip, and I wanted this done as soon as possible in case there was a risk of cancer. As a result of this conversation I had fully expected to be given a local anaesthetic for the procedure. 

I got home and looked up 'Painful Hysteroscopy' online and was appalled (and partly reassured) to see that up to 25% of women experience severe pain. I had no idea there was an option to have this procedure done under general anaesthetic, although I probably wouldn't have gone for it anyway, as I was only expecting period pain type cramps. I have regular lower gastrointestinal endoscopies and sigmoidoscopies without anaesthesia and bear the discomfort pretty well. So I assumed this would be similar. 

I have gone from being pretty fearless and confident to being terrified of going back. I wrote this on the day it happened while it was still fresh in my mind.

63 year old woman. Procedure 16 Sept 2021 at Nevill Hall Hospital, Abergavenny

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This is such a ghastly experience for you. I’m so sorry to hear that you weren’t given the information, care and support you needed. It’s a harrowing read and I’m sending you my best wishes and commitment that we’ll do all we can to expose and address this terrible practice. Helen 

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I have had 3 hysteroscopies at the JR in Oxford, each worse than the last. Almost the worst bit was being treated like a silly child making a fuss about nothing when I was In agony. I was led to believe than no one else had ever complained about the pain. I was not offered local or general anaesthetic beforehand, though on the last occasion they did finally give some LA in my cervix when they couldn’t get in otherwise. I was menopausal and childless, with several large fibroids, so they must have known it would be difficult and painful. I didn’t complain at the time because they diagnosed endometrial cancer at the third one, and I had other worries, but also because I didn’t think anyone would listen to me. I’m so glad to have it confirmed that I'm not hysterical or mad. Is there any progress on this issue? Or are NHS still pushing to have it done in Outpatients? Purely to save money of course….

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So sorry to hear your experience Jane, three times, ghastly. Following the guidance, NHS provision and support is patchy and inconsistent. Something that campaigners have been highlighting for years. The broad response is ‘the guidance is there, NHS providers need to follow it.’ Not much help to women when clearly this doesn’t happen. The government have just published a vision for a Women’s health strategy, a few days ago. We will continue to support campaigners and push for action. A strategy, a policy, a commitment is not enough whilst women are experiencing such avoidable pain. 

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Just joined all you other ladies after having an unsuccessful hysteroscopy 3 days ago. I only wish I had known about this beforehand. 

Never before have I experienced such extreme pain. I have had 3 natural births and previous surgeries. I too was not warned how painful it could be. The consultant did spend a few minutes telling me about the procedure and that I could stop it at any time I felt "uncomfortable". In the event, he called a halt as he could not dilate my retroverted cervix. He tried manually to move it and also tried to "grab"it with instruments. His words. I have spent the last 3 days experiencing flash backs and now I have to return to do it all again under a GA. This procedure should never be carried out without anaesthetic in the first place. 

To everybody facing this-say no unless you are offered an anaesthetic. 

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On 24/12/2021 at 15:36, Jane Mactaggart said:

I have had 3 hysteroscopies at the JR in Oxford, each worse than the last. Almost the worst bit was being treated like a silly child making a fuss about nothing when I was In agony. I was led to believe than no one else had ever complained about the pain. I was not offered local or general anaesthetic beforehand, though on the last occasion they did finally give some LA in my cervix when they couldn’t get in otherwise. I was menopausal and childless, with several large fibroids, so they must have known it would be difficult and painful. I didn’t complain at the time because they diagnosed endometrial cancer at the third one, and I had other worries, but also because I didn’t think anyone would listen to me. I’m so glad to have it confirmed that I'm not hysterical or mad. Is there any progress on this issue? Or are NHS still pushing to have it done in Outpatients? Purely to save money of course….

I was post menopausal, have never been pregnant, and have a retroverted uterus - none of which was taken note of when I had my horrendous OP hysteroscopy. In other words, I was never, ever a candidate for this procedure on an OP basis, nor did I give informed consent under the rules in force at the time. I nursed for 40 years and was taught to treat people as individuals, as well as tell them the truth. Unfortunately this seems to be extremely rare in the case of OP hysteroscopies. The medical model seems to me to be to hope that nobody will research the procedure before having it. Had I done so, there is no way that I would ever have consented to having it done without a GA.

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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.

 

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On 13/12/2021 at 09:35, Patient Safety Learning said:

I was subjected to an excruciating hysteroscopy in outpatients without being made aware of all the pain options. I was denied local analgesia when I asked about it beforehand and told it wouldn't be necessary as the pain would be slight cramping. It wasn't.

I noticed some light spotting about 6 weeks ago. I reported this to my GP, who sent me for an internal ultrasound. This identified slight thickening of the lining of my uterus (7mm), so I was sent for a hysteroscopy at Nevill Hall hospital, in Abergavenny. I received a leaflet in advance, which said 'some patients experience discomfort. If you find the procedure uncomfortable, please discuss this with the clinician'. it also stated that one of the frequent risks was pain. However, on the same page it said 'You will be offered local analgesia', so I didn't worry too much.

When I met the clinician in advance of the procedure, he explained any discomfort would be like period cramps. I asked about pain relief, but he repeated it would just be like period pains, if I experienced any pain at all. As I used to have dreadful period pains, have had coils inserted and removed, and have given birth naturally twice - once without pain relief - I thought I'd be fine with this. I'm usually pretty tough when it comes to pain, in any case. 

When the procedure started, I felt some discomfort when the hysteroscope went through my cervix, and remember saying 'Ow'. Then the most incredible, searing, tearing pain I have ever experienced - I guess it must have been the pressure of the saline. I found the arms of the bed to grab onto, and could hear myself shouting -No no no no no, stop stop stop-. The plan had been to take some pictures, followed by taking a sample of the lining of my uterus lining, but the clinician stopped the procedure having had a look and taken some pictures. They may have spoken to me and asked questions during this time, but I have no recollection of anything except the pain. When I finally opened my eyes, the clinician was nowhere to be seen, and the two nurses were asking if I was OK. I was extremely shaken and very out of it, from the pain and the shock.

After I'd recovered for a few minutes, still with my legs in the supports, and lying back in the examination chair, the nurses told me I should go and get dressed, which I did, very shakily. They then showed me out of the room to the clinician's room opposite. Another doctor was standing in the doorway of his office, and I wasn't asked in, or asked to take a seat. I just stood in the doorway, still dazed and very shaken. The clinician looked up at me from his desk and said everything looked fine and joked that he would give me a 10 year warranty, as all seemed in order. The nurse then pointed me towards the exit door and I was on my way out of the department, to drive myself home. There was no offer of anywhere to sit and recover. I felt a complete wimp, and as if I'd made a terrible fuss about nothing. And very confused. As I mentioned earlier, I'm usually really brave but this was the worst pain I'd ever experienced.

I had phoned the hospital the day before the procedure, as I'd noticed in the patient leaflet that it said I needed someone with me to take me home. The person I spoke to said that was because I would be given local anaesthetic, and if I had an accident on the way home, my car insurance would be invalidated. She said it was at my own risk if I attended on my own and drove myself home. Having driven many times after local anaesthetic, coming home from the dentist, I took the decision to attend the hospital on my own, as it was short notice to find someone to drive the 40 mile round trip, and I wanted this done as soon as possible in case there was a risk of cancer. As a result of this conversation I had fully expected to be given a local anaesthetic for the procedure. 

I got home and looked up 'Painful Hysteroscopy' online and was appalled (and partly reassured) to see that up to 25% of women experience severe pain. I had no idea there was an option to have this procedure done under general anaesthetic, although I probably wouldn't have gone for it anyway, as I was only expecting period pain type cramps. I have regular lower gastrointestinal endoscopies and sigmoidoscopies without anaesthesia and bear the discomfort pretty well. So I assumed this would be similar. 

I have gone from being pretty fearless and confident to being terrified of going back. I wrote this on the day it happened while it was still fresh in my mind.

63 year old woman. Procedure 16 Sept 2021 at Nevill Hall Hospital, Abergavenny

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.

0 reactions so far
On 24/12/2021 at 15:36, Jane Mactaggart said:

I have had 3 hysteroscopies at the JR in Oxford, each worse than the last. Almost the worst bit was being treated like a silly child making a fuss about nothing when I was In agony. I was led to believe than no one else had ever complained about the pain. I was not offered local or general anaesthetic beforehand, though on the last occasion they did finally give some LA in my cervix when they couldn’t get in otherwise. I was menopausal and childless, with several large fibroids, so they must have known it would be difficult and painful. I didn’t complain at the time because they diagnosed endometrial cancer at the third one, and I had other worries, but also because I didn’t think anyone would listen to me. I’m so glad to have it confirmed that I'm not hysterical or mad. Is there any progress on this issue? Or are NHS still pushing to have it done in Outpatients? Purely to save money of course….

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.

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