"Painful Hysteroscopy & Biopsy"

I have been experiencing very heavy and painful periods for 10 years. After a recent smear test early in 2019, I had a discussion with a nurse at my local GP surgery who suggested that I speak to my GP about these issues. I met with my GP and, after a consultation, I was referred for an ultrasound scan, which also included an internal scan. The results of the scans showed that I had multiple fibroids and also the lining of my uterus walls were very thick.

I returned to see my GP to discuss the results and she suggested that I have the Mirena coil fitted. She explained that this would help with the fibroids and also to reduce the thickness of the uterus walls, therefore helping with my heavy and painful periods. She referred me to the Gynaecology department at Kettering General Hospital because there was no one qualified to fit the coil at my GP surgery.

I eventually got an appointment at Kettering General Hospital where I had a consultation. We discussed the results of my scans and the consultant also asked me lots of information in relation to my childbirth history (I have given birth vaginally twice) and also lots of questions in relation to the problems I was having with my periods.

It was agreed that the Mirena coil would be a good option for me. However the Dr also said that they would like to perform a Hysteroscopy and biopsy at the same time as fitting the coil. They did not go into any major detail about what these procedures were or indeed the reasons for carrying them out. This took me by surprise as I thought I was there to have the coil fitted and nothing else. I was given two leaflets, one Kettering General Hospital leaflet explaining the Hysteroscopy procedure and also another leaflet about the Mirena coil.

I explained to the Dr that I have Fibromyalgia and can be sensitive to pain. I was told that was okay, that the procedures could be slightly uncomfortable but that I could ask for it to be stopped during the procedure if I wanted to. At no point was any pain relief, sedation or anaesthetic offered to me or discussed at all.

I was sent away and told to wait for a letter with my appointment date.

The Kettering General Hospital leaflet that I was given explaining the Hysteroscopy procedure did not say anything about pain relief, sedation or anaesthetic options. After reading the leaflet I had no reason to believe that the procedures would be anything other than slightly uncomfortable.

In September 2019, I attended the Gynecology department at Kettering General Hospital for my Hysteroscopy and biopsy procedures and for the Mirena coil to be fitted.

Prior to entering the room I had my blood pressure taken by a nurse, who commented on how good it was. I then had to undress from the waist down and put on a gown. I was taken into another room by a nurse and told to sit in a chair. There was another nurse in the room with us and also another member of staff who I immediately realised was not the Dr I had seen before. From our previous consultation, I was under the impression that it would be the consultant who was performing the procedures but this was a different person. They did tell me her name but I cannot remember it.

This other Doctor showed me a photograph of some flowers, which were on the ceiling – I was told I could look at them while the procedures were taking place. I was also shown a screen/monitor to my right hand side, again I was told I could look at that and see the inside of my uterus when the procedures were taking place.

The Doctor then showed me a long appliance which looked like a long rod, I was told this had a camera on one end of it and would be used to look at the inside of my uterus. My chair was then reclined and I was asked to spread my legs for the procedures.

What happened next I could only describe as one of the worst experiences of my life. As I said before I've given birth naturally twice but this was nothing in comparison.

I felt severe pain immediately as this rod pierced through my cervix and I immediately started to panic. I closed my eyes and I remember my breathing became rapid. I felt lightheaded. The nurse to my right noticed and she kept asking me to repeat my name and date of birth over and over again, while the nurse to my left placed their hand on my left shoulder and told me I had to slow my breathing down. I remember her encouraging me to breathe slower as she asked me to breathe slower along with her.

The Doctor also saw that I was struggling. They kept asking me to look at the monitor to see the inside of my uterus but I could not open my eyes. I felt faint, I had started to shake and all I could think to do was concentrate on my breathing.

I remember feeling so much pain and discomfort inside me, I felt as if all of my insides were being pushed up towards my shoulders. It was a very strange feeling, incredibly uncomfortable and painful.

I do not know how long the procedures took. I remember the Doctor telling me that they were fitting the coil but that is it.

When the procedures were over, my chair was raised to a sitting position and I was told to walk through to the other room, get dressed and I could leave. I stood up out of the chair feeling very weak and I was still shaking. I had to pick up my own bags (my handbag and also the bag they had given me to put all my clothes in). I managed to pick these up and I remember asking to go to the toilet. In the toilet I started to feel very weak and I saw that I was bleeding heavily from my vagina. I walked to the area where I needed to get dressed.

I managed to get dressed but then I started to feel sick, lightheaded and I was beginning to sweat. I had extreme pains coming from my stomach and my vagina – I can only liken these pains to labour pains.

I had to sit on the couch in the room because I felt faint. A nurse came into the area with me and said that she needed to take my blood pressure before I left. She gave me some after-care leaflets (which I was clutching in my left hand while she did my blood pressure).

Because I felt so unwell I was using these leaflets to fan myself, I felt very hot, sick and faint. The nurse noticed this and also commented that my blood pressure was incredibly low. I told her that I felt sick and faint. She laid me down on the couch and told me to stay there.

She left me on my own and came back shortly afterwards with another nurse. I could barely explain how I was feeling and they continued to monitor my blood pressure, which was still very low. The other nurse was the same nurse who had taken my blood pressure before the procedures. She did not seem very concerned that I felt so unwell and that my blood pressure was low.

Because I felt so unwell I started to panic. I felt that something was very wrong. The nurse kept popping back in to check my blood pressure and see how I was and she moved a fan in front of me and turned that on. I was then left on my own again until she came back every now and then to check on how I was. I said I felt worse.

The Doctor who had performed the procedures then entered the room and saw that I was feeling unwell. They looked at the blood pressure machine. They seemed confused as to why I was feeling unwell and in pain. They said they needed to wheel me into another room because another patient was due to come in.

I was placed into a wheelchair and taken to another room down the corridor. Another nurse checked my blood pressure, which was still low. I complained that I was in so much pain, that it felt like labour pains, so I was offered a paracetamol. The nurse came back and gave me one paracetamol – she then asked me if I'd taken any pain relief prior to the procedures. I said I'd taken 2 Ibuprofen caplets a couple of hours before. She then said that I shouldn't have had anything else at all and took the second paracetamol away.

For the next hour my blood pressure rose a little then dropped and kept doing this. I felt incredibly scared, as I did not know if this was a normal reaction or whether there was something wrong. After about an hour and taking the one paracetamol the pain started to ease, as did the nausea. The nurse made me a cup of coffee and gave me a ginger biscuit.

The Doctor who had performed the procedures then came into the room and said that the procedures had gone so well and that they had no idea why I had reacted the way I had. That made me feel worse as I felt they were looking at me as if I'd made an issue out of nothing and that this reaction was unheard of. I continued to think that there was something wrong so the Doctor said they could take me back into the other room and take the coil out. I said that I didn’t want any more procedures after what I had just experienced.

After about 90 minutes I said that I was still in pain but not as much and, although I still felt very unwell, I was allowed to leave. I went to the waiting room area outside and called my Husband to come and pick me up. He had to pick me up directly outside the Rockingham wing as I still felt lightheaded and could not walk very far. He took one look at me and said that I looked absolutely terrible, incredibly pale and unwell. He was very shocked that I looked so poorly.

I went home and rested up for the rest of the day as advised. However, I was still in pain and felt weak. I was still shaking and I kept having flashbacks to the procedure.

I explained to my Husband how painful it had been and how shocked I was because I had been told it would just be slightly uncomfortable. My Husband asked me why I had not asked the Doctor to stop. I can only say that I shut down during the procedure. From the moment the rod pierced through my cervix and I experienced the start of the pain I went into shock. My mind shut down and all I could do was concentrate on my breathing. That is the only explanation I can give for not telling them to stop.

However, the two nurses and the Doctor saw that I was struggling. As soon as my breathing became rapid, I shut my eyes and I started to become agitated. They saw that I was struggling. That is when one nurse started asking me to repeat my name and date of birth over and over again and when the other nurse placed her hand on my shoulder and told me to slow my breathing down. At no point did anybody ask me if it was too much and if I needed to stop. If they had I might have managed to nod my head or say yes.

It is currently just over 6 weeks since I had my procedures. I am still getting cramping and I am still bleeding on and off. I am still feeling incredibly emotional when I think about how it felt. I have been too afraid to call the hospital or go back to the Gyneacology department because of how I feel. I was told at consultation that the procedures would just be slightly uncomfortable. No pain relief, sedation or anaesthetic options were discussed with me.

Over the last 6 weeks I have been researching painful Hysteroscopies and I have found hundreds of other women who have been through the same ordeal. There are online support groups for women who have experienced painful Hysteroscopies.

So I am not alone. Other women are being told that this procedure is just uncomfortable, a bit like a smear test, when the truth is that a lot of women do experience severe pain and discomfort. Some women do just find it a little uncomfortable but there are a lot of women who find it very traumatic.

Why was I not informed that some women (in my research one in four women) experience severe pain and discomfort with a Hysteroscopy?

Why are they are being carried out without the options of any pain relief?

Why was I not given the option to have pain relief, sedation or an anaesthetic?

I feel I was seriously misled and that I was not given the correct information prior to the procedures.

I was also not asked about pain ratings during and after the procedures. No one checked in with me during the procedures to ask how painful it was and nobody asked me these questions afterwards when I felt so unwell either.

- How often do Hysteroscopists receive training?

- Has there ever been a pain audit carried out of your Hysteroscopy teams?

- Have Hysteroscopists ever received training to know “when to stop” a Hysterosocopy?

- Why are pain scores not routinely used during and after the procedure?

I have been given a copy of a questionnaire sent to Kettering General Hospital under the Freedom of Information Act 2000. This questionnaire asked specific questions about the Hysteroscopy procedure and was completed by the Information Governance Department on 4th April 2019.

One of the answers (to question 1A) given in this questionnaire stated that “RCOG information leaflets would be sent out in future to all coming to Hysteroscopy appointments from 1st May 2019”. I was not given one of these RCOG leaflets and instead given a KGH one.

Another answer (to question 2) given in this questionnaire stated that “ALL Hysteroscopy patients from the outset are routinely offered the choice of having this procedure as a day care with the following pain relief offered - a general anaesthetic or local anaesthetic”. I was offered neither.

I have been left feeling severely traumatised by this experience. I am not sleeping properly at night, I wake up thinking about the procedures and how they felt. I feel very emotional when I think about it and I'm also very angry that I was not given all the information and any pain relief options at all.

I contacted PALS a week after my procedure to tell them that I was not happy and ask them the same questions I have asked here. Over 6 weeks on and I have not heard anything back from them.

I have made a formal complaint to the hospital about not receiving correct and honest information prior to my procedures. I was not pre-warned that this procedure could be extremely painful and was not given any options of pain relief at all.