I survived my hysterectomy – Diane’s story

Hi my name is Diane and I survived my hysterectomy. I say survived because of everything that happened before, during and after my procedure.

After being in pain for over three years and many gynaecological visits involving scans, cameras, injections and the pill it was finally decided that due to suspected adenomyosis and being unable to find any resolve for the unbearable pain I was constantly suffering the best course of action would be to have an hysterectomy. This I was informed would be a vaginal hysterectomy where my uterus would be cut away and everything else would be left intact.

I was informed that I would be unable to lift a kettle for six weeks and when I asked about the amount of time I would need off I was told around six weeks. Having been sterilised a few years before and one of the clips being left inside of me and it being found several years later whilst have an exploratory, as well as having a procedure to stretch my urethra and the staff not leaving the numbing gel long enough before they started the procedure I was quite anxious when told that there was a risk of bladder and bowel injury during the procedure. “Oh really,” I said to the gynecologist worriedly to which he replied that it had never happened to him, making me feel better, having every faith in my gynecologist I said I was happy to go ahead as long as he was doing the procedure and that I did not want anyone else, no trainees etc doing the procedure.

So came the day of the 29th January 2014 I arrived at the hospital at the stated time saw the anaesthetist, my gynecologist and nurses who were looking after me during my stay, gowned and ready I went to theatre around 11 ish.

I awoke to someone calling my name over and over again until I lifted my eyes, still dazed and groggy from the anaesthetic and morphine. I must have dozed as next thing I remember is opening my eyes and being on the ward, nurses came and asked how I was and fussed over me asking if I was in pain which I was. I felt unable to move and my stomach felt sore and tender which I thought was strange. When I looked at my stomach I was horrified to see a pipe going through my stomach and a small bag attached at the other end which had blood in it along with a dressing along my midriff.

I had been cut open, another pipe was coming from my vagina to which a bag was attached also full of blood, which was in fact a catheter, it was unreal like it was not me lying there but someone else, possibly the effect of the drugs or maybe the shock of realising I had been cut open which was not what I was expecting.

I must have dozed a little as the next thing I remember is my gynecologist a nurse and another gentleman being stood at the end of my bed. I remember being told my uterus was torn and urologist was called to repair tear and I had stents all of which I was unable to really take in or comprehend. During the night I kept waking in pain and worried about my catheter bag which was now full to the brim. I tried to get out of bed but was unable to so pressed for the nurse on night duty who came and said she would come back in twenty minutes to empty it. I began to worry about the effect it would have leaving it for that long and pressed the buzzer again and said that it needed emptying or I was going to try do it myself as I was worried and frightened regarding the effect it could have not being emptied, subsequently the nurse then emptied it.

The next day I was given a bed bath and with help managed to get out of bed and sit in the chair for half an hour. I felt emotionally and physically drained both from the procedure and also what had happened to me. I was told I had to go for a scan to make sure there was no leak from my bladder and that afternoon the catheter bag was removed and the pipes left dangling whilst I went for my scan, no leaks were found. When I returned to the ward the urologist, my gynecologist and also a nurse attended my bedside again. The urologist asked if I had had my scan to which I replied I had and he began to read my notes, he then turned and started shouting at the nurse regarding my catheter bag being removed whilst I went for my scan, obviously this should not have been removed from what he was saying to her. He then told me that I would be coming back in around 6 to 8 wks to have the stents removed and then they all went.

I began to worry after they had left that there might have caused a problem taking off the bag and got myself worked up into a state and needed reassurance. I buzzed for the nurse and asked if I could see someone and was told that she would take a look at the catheter I asked her to find a urologist to do this as I did not have any faith in anyone apart from a urologist doing so after them having taken my bag off when they should have left it in place. A few moments later a doctor came in dressed in operating gowns he asked what the problem was. I broke down and told him how frightened I was, to which he replied that I should think myself lucky to even come out of theatre as some patients don’t and that I should not let my family see me that upset and would I agree to let the nurse check my catheter. I nodded and he left, the nurse came back in did a scan and said everything was ok.

I stayed in another few days and kept myself to myself apart from constantly asking if I could go home; I had never felt so frightened and alone I still did not know fully what had happened to me and no one was forth coming to explain fully. The day I was discharged my husband came in and the nurse demonstrated to him how to inject me with anti blood clotting injections which he had to do for ten days and I was to come to have a scan 10 days after being discharged and have the catheter removed.

I was given my discharge papers and told to call if I was in any pain and that was it, no do’s or dont’s no information on what to expect in the coming weeks, that was that, but at least I was free to go at last. The next week I spent in bed only getting up to empty my bag which I constantly worried about as it was full of blood every day for over a week. I waited till the end of the week for my scan appointment which never appeared and ended up having to phone the hospital to chase up.

I went for my scan 10 days after I left hospital which was quite difficult as walking was an issue because of the operation and also the stents which I wasn’t aware of them being a problem until several weeks later upon reading up about what they were for and the side effects. My daughter accompanied me to the hospital and had to get a wheelchair to take me for my scan which turned out well no leak and therefore the catheter could come out.

I had to go home and come back that afternoon to have a pre-assessment to have the stents removed in a few weeks time, the nurse I saw was lovely giving me advice regarding going to the toilet having had the catheter out that morning and not having thus far being able to empty my bladder informing me to try a warm bath and just in general being empathetic regarding my frightened state in what I had endured and what was still to endure. I was unable to get about for nine weeks after the operation and was in constant pain throughout especially when I needed to empty my bladder. I was unable to sleep, constantly breaking down and all the while wondering what had actually happened. I looked up stents on the internet to find out about them and was glad I did as it gave advice for patients who had stents and advised that they should drink up to 2 litres of water a day, something else that was not told to me upon discharge. I had written a letter of complaint to the hospital on 17th February regarding what had happened to me and wanting all the unanswered questions answering

I was sent an appointment to see the urologist on 6th March who explained the reason for the stents and that my bladder was cut and by the time he had got there I was already cut open. I spoke about the pain I was in and my inability to be able to walk very far as after ten minutes walking or so I could not move and he said that it was the effect of the stents and that I would be receiving a letter soon regarding their removal, I asked if there were any known complications to which he stated that the only risk would be that of possible infection.

A few weeks later I received my appointment  for April 2nd. As the time got closer I became very emotional pondering as to whether I should go in at all to have them removed, but as having read that they can only stay in for a limited amount of time I had no option but to attend. I attended the hospital for the procedure and had to wait 3 hrs before going to theatre. Such was my fear I broke down crying when the nurses came to take my blood pressure and told them how worried I was after what had happened previously when I had came for an operation.

The anaesthetist came and not long after the urologist who asked me to sign the consent form, which I noticed mentioned the risk of bladder injury which worried me a great deal having had my bladder injured several weeks earlier. The urologist said the risk was the same as the chance of being knocked down by a car; which incidentally I have actually been run over by a car so it did not really set my mind at rest. I went to theatre when it was my turn and broke down again and was given something to calm me, then I was asleep; once again awaking to someone calling my name, but this time I was lucky enough to come through it unscathed.

I left a few hours later with a huge sigh of relief, one more appointment to go and hopefully answers from the gynaecologist which was five days later.

So my husband and I arrived at my appointment and sat down with the gynaecologist who had done the procedure. I explained how upset I had been at the lack of information I had been given before during and after my procedure and asked what had happened. He stated that my bladder was adherent to my uterus and that my bladder was cut immediately upon entrance to take my uterus away. I expressed that I had been angry that it had happened, especially given the fact that when I was told of the risk of bladder injury he stated it had never happened to him which thus gave me the confidence to go ahead with the procedure, as I had every faith in him having been under his care for several years. Imagine my shock when I asked him how it happened and to learn that he did not do the procedure but let someone else do it because they had requested him to be able to do it and it was that person who had done the damage.

Although he would not give a name, he did of course apologise profusely and admitted that he should have done the operation which was agreed at the initial consultation when agreeing to the operation. We also discussed the lack of support before during and after an hysterectomy and I informed him of your website which I found to be invaluable to me during my ordeal and suggested that he pass your details on to the our local health authority and maybe request posters and leaflets from you in order to give out to potential patients so that they can make an informed choice before they go ahead with having an hysterectomy.

I know that this is a very long e-mail but I felt it necessary to arm you with the full facts in order for you to somehow be ale to understand what I have gone through and hopefully help other women to fully look into what they are about to do and be armed with all the facts.

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

2 comments

  1. I would like to tell you I did have a hysterectomy in November 2013 and also another smaller operation for my gall bladder in January 2014. If it was not for the investigating of the gall bladder stones I would not have had known about my 15cm cysts coming from my ovaries …anyway the reason I have contacted you was because of all these operations ..my teeth have had a good battering ….the pipe and clamp has made them loose and my front two teeth have broken completely and now at the moment I have to wait for my new ones ….I will be putting a claim against the hospital and I have gone through P A L S …they have helped me from the beginning and now again …wish me luck !! but if any one notice that the teeth are very sensitive after their operation it is quiet common debs x

  2. Hi Diane
    Oh dear you have had a terrible terrible time. I’ve had a rough time with no/little communication & wrong meds given etc but not as bad as you. I’m considering complaint but not until I’m strong enough & on my feet.
    You need to follow through your complaint letter to the hospital, keep all corespondence & see a solicitor who specialises in medical negligence, you deserve some answers & full explanation after your awful ordeal. Keep strong & look after yourself.

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