"I had my judgment about my own treatment disregarded"

I had an appointment to attend Salisbury Hospital for a consultation regarding post-menopausal bleeding. I knew that I would be having an Ultrasound, and the literature that was sent to me suggested that I went with a full bladder. On arrival at the radiography department, I was told that it was in fact a trans vaginal scan and that the information I was sent had been incorrect and in fact my bladder should be empty for the procedure. This was just the first example of the inadequate or erroneous information that I was sent prior to my consultation in the Gynaecology department that day.

Following the scan I was sent to the Gynae department, where after a consultation I was told that I would have to undergo a Hysteroscopy as I had a thickened womb lining, which can be a sign of cancer. I was not expecting to have this procedure done on the same day as my scan, and was somewhat surprised, as a result of this, I had taken no pre-procedure pain relief, but was led to believe that it would be an uncomfortable but relatively painless procedure, and having had numerous smear tests and a couple of coils over the years, I was not unduly worried at the time. I was taken into another room and my legs were put in ‘stirrups’, at no time was I offered any anaesthetic or pain relief. The doctor then attempted to insert a camera through my cervix into my womb to see what was going on. It was the most painful experience of my life, and I have experienced childbirth twice. I felt hot and faint, and as the pain which felt like red hot pokers being pushed into my abdomen intensified, two nurses tried to distract me with hairdresser style chit chat. In the end, they abandoned the procedure. It was barbaric, like a medieval torture, I was in so much pain. I was told that I was obviously too sensitive, and before I had time to draw breath, or discuss alternatives, I was packed off to pre-op to be assessed for coming back to have the procedure done under general anaesthetic. I asked if I could attempt the procedure under local anaesthetic, but was dismissed as being ‘far too sensitive’. When I got to pre-op, the nurse told me that she sees at least 3-4 women a week in pre-op for a GA as they cannot tolerate Hysteroscopy without pain relief. I was in a daze, and still in pain, I just signed the forms they gave me without question.

I cried for 24 hours, I was in so much pain. I felt as though I had been assaulted and robbed of my dignity, and given no choices about the procedure which I had been totally unprepared for, then forced to have a General Anaesthetic which I did not want. I went to visit my GP, who telephoned Salisbury and withdrew my consent for a GA and I got another appointment to see a doctor at the clinic to discuss the way forward with a planned procedure under local anaesthetic. My GP was compassionate and listened to me without judgment, she seemed to ‘get it’, and after her conversation with Salisbury, I felt as though things would get better.

At the second appointment, I attended with my daughter. I explained to the doctor that if I had been given an option of a local anaesthetic and effective pain relief in the clinic I could have most likely managed the procedure and have got the procedure over and done with on my first visit, but I was totally unprepared for how painful it was going to be, and was not offered pain relief of any kind, not even a Paracetamol. She told me that they do not have the facilities to offer a local anaesthetic in the clinic, despite Salisbury Hospital’s own clinical guidance on Hysteroscopy stating, ‘In situations where the patient is unable to tolerate the examination or dilatation of the cervix is required such as during operative hysteroscopy, a paracervical or intracervical local anesthesia should be used’. I had to insist on being offered that option rather than a general anaesthetic, as I wanted to try again, now I knew what to expect, without an unnecessary GA and all the inherent risks that would entail. It was agreed that I would come back to day surgery for an appointment to be done under local anaesthetic, that I would have a quiet and stress free environment in which I could concentrate on self-hypnosis and that I would be given a pre-med to calm me further, and that my partner would be present at the procedure, as he had been at the first one. I felt happier with this plan and waited for my appointment to attend day surgery.

I attended day surgery 2 weeks later. It soon became obvious that the staff had little or no knowledge of what had been discussed at the clinic regarding my treatment plan. I had in fact been booked in for a GA, which I refused. I was taken into the unit at 12. 30 midday, and put in to a cubicle, where I was provided with a ripped gown with a hole in it and no tabs with which to do it up, and told to get undressed and into bed. As I was expecting a local anaesthetic, I had not brought a dressing gown or anything like that as I had been given the impression I would be in and out quite quickly. No-one could tell me the time of my procedure, so I was unclear as to when I should take the strong painkillers that had been advised on all literature to be taken 1 hour before the procedure.

At approx 2. 30pm, I was approached by 3 members of theatre staff who tried to persuade me to have a General Anaesthetic, and if not, I should be prepared to have one should the procedure be unsuccessful, they explained that it would be longer and more difficult for me should this be necessary, and maybe it would be better to just have a GA full stop. I said I would consider it. I was then approached about 10 minutes later by an anaesthetist who also tried to persuade me to have a GA. I still stuck to my guns and refused. Their answer to this was to send yet another anaesthetist to explain to me how safe a GA was and that I should consider it. It was at this point that I broke down, I was crying uncontrollably, it was like no-one was listening to me or paying any heed to my treatment plan that had been agreed in clinic prior to my admission. Two nurses came with a pre-med, and I refused, as I did not want to make any decisions about my treatment once I had taken drugs, I felt as though I had to stay ‘sober’ in order to guard my own interests, I sent them away. I was under so much stress, feeling as though I was being forced to have a procedure that I had not agreed to.

A lovely staff nurse, who was managing a different list heard what had been going on and came to talk to me as I was so distraught. I said to her that I felt that it would be easier for everyone if I just gave in and agreed to the GA. She said, ‘Yes, it would be easier for everyone, but what about you? Gone are the days when we can just tie you to the bed and do what we like, what do you want? ’ I said that I wanted to stick to my original plan, and she went off to communicate this to them all.

At 5pm after a whole afternoon of the stressful fight for my own treatment plan to be acknowledged and when my pre-med was wearing off, the time came to have my procedure, and I was asked to walk to the theatre. The kind Staff Nurse found me another gown to hide my modesty, and I asked about my partner. I was told categorically, despite being told earlier that day that he could come in if he wore a theatre gown that he would not be allowed in as arranged. I walked to the theatre, and then as I went in through the doors alone, I just saw red. I left the theatre in floods of tears and said that I was discharging myself to go privately, the stress was just too much for me, and facing the procedure without my partner as I had been promised was the last straw.

The lovely staff nurse found me in the corridor on the way back to my cubicle to get my clothes and asked me what was going on, I just broke down. She immediately organised someone to go and find my partner. Several nurses rallied to my aid, and got him a gown, and bustled us back into theatre. Even at the last it was a fight, someone said, ‘he can’t go in without a cap’, trying to stop him going in, and one of the nurses just rounded on that person and said, don’t be ridiculous, he’s bald for God’s sake!

I then had the procedure under local anaesthetic with my partner one side, and the amazing staff nurse on the other, and I did it. It was uncomfortable, but despite the stress, I breathed through it and it got done successfully. With the local anaesthetic, it was bearable, like it should have been the first time.

I went back to the cubicle for tea and biscuits to recover, and the anaesthetist came to apologise to me. He said, I could say, ‘I told you so’ if I wanted to. He was very kind, and tried to allay my fears again.

This could have been so much of a different experience, and if not for a few dedicated and amazing staff who stood my corner, I believe I could have been in a lot worse position post operatively, and had an unnecessary GA that I neither wanted or needed, this whole situation and the stress and pain inflicted on me was totally avoidable.

This procedure could have been done in Clinic with a local anaesthetic on day 1, saving the NHS time and money, and me a lot of distress, but it was never offered. Treatment plans that were agreed prior to the procedure were totally disregarded, the clinical guidance issued by the hospital itself was ignored. I was made to feel like a failure for not enduring the procedure in clinic, and I had my judgment about my own treatment and body totally disregarded, as if I was stupid. The literature accompanying this procedure is wholly inadequate, and women are being led up the garden path like children who are told, ‘oh this won’t hurt’, and offered a bit of chatty distraction rather than grown up clinical solutions and choices regarding this procedure. At least now, following this experience I know I am by no means the only one, which is cold comfort considering that women up and down the country are suffering these experiences of Hysteroscopy. In 2017 women should not have to fight to be heard, and they most certainly should not have to fight not to be hurt.