"Agonising Hysteroscopy"

About: The Royal Victoria Infirmary / Gynaecology

(as the patient),

I have never experienced such excruciating pain. I was not warned beforehand. I received no literature at all from the hospital. The possibility of severe pain was not made plain to me on the day of the procedure, in fact it was played-down. 

I have endured other procedures and do not have a low pain threshold. However, as I told the hysteroscopist, I’d suffered badly during a similar biopsy some years earlier. I was told that this time I’d have a local I to my cervix. I asked would that reduce uterine pain, which is where I had severe pain last time. The response was no but the equipment used is now much better, reducing pain. The problem last time would have been the method used, the uterus having few pain sensors. There was no mention of sedation or general anaesthetic.

The injection was extremely painful but at least it was over quite quickly. After that the pain level ramped up as the device was inserted. At the point the biopsies were taken the pain absolutely exploded, I was in agony. I was trying hard not to scream in pain, about to vomit and very close to blacking out. I was in so much pain that I could not communicate this to the medical staff. The procedure just seemed to go on and on and felt barbaric.

I was nauseous and struggled to stand afterwards but was just sent straight out of the unit with no one checking I was ok / needed a rest / needed a drink. Still in severe pain, I only got to the café area just outside the door and had to sit for 10-15 minutes to recover myself. From there I could walk only the short distance to hospital reception. After another 10 minute rest I got to a seat outside the building where I had to sit and rest again.

No one in the examination room had been at all alarmed. Throughout, one of the nurses was chattering rapidly right next to my head, which I found quite disorientating – I later found out this was probably meant to distract me from the pain. I find that insulting, to think that chatter about the weather can dull the most severe pain many women will ever endure (I’m now aware that many report this as “off the scale” compared to childbirth).

I now know that RCOG give advice on suitability for OPH procedures. Any one of the 5 categories listed would mean that extreme pain is likely and needs to be managed. Of the 5 categories, 3 apply to me.

•   if you faint during your periods because of pain

•   if you have experienced severe pain during a previous vaginal examination

•   if you have experienced difficult or painful cervical smears

My situation was known by the medical team. From the information I now have, I should never have had this treatment without sedation or GA, so why was that not obvious to them? Having managed my severe menstrual pain for 40 years, approximately 500 instances of this, I am the one with the best information on the severity of my uterine pain and how to treat it. My expertise should have been included in that pain management.

I am glad that there are methods to examine the uterus and very grateful for our wonderful NHS - but I am shocked that these are carried out with seemingly no regard for the severe pain that many women experience. It was no surprise to learn of the petition “End barbaric NHS hysteroscopies with inadequate pain-relief”.

Responses

Response from The Royal Victoria Infirmary

We are sorry for your recent experience in Women’s Services at the RVI and the pain you experienced during your procedure and would be very interested in exploring this further with you. If you would like to discuss this please contact our Patient Relations Department on 0191 2231382 or e-mail patient.relations@nuth.nhs.uk.

If you wish to raise your concerns with someone who is not involved in your care, the Patient Advice and Liaison Service (PALS) can listen to your issues and aim to help sort out problems quickly and can be contacted on Freephone 0800 032 02 02 or by email on northoftynepals@nhct.nhs.uk.

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Update posted by Thisisnotcramping (the patient)

Thank you for the response. Very happy to explore this further. Grateful if you'd post any further information you feel will help me here.

Likewise, if Women's Services, or Patient Relations, can let me know what additional information they need from me, or what they'd like me to expand upon, I'll reply with details.

Response from Alan Mitchell, Patient Experience Team, The Newcastle upon Tyne Hospitals NHS Foundation Trust

Thank you for getting back regarding your feedback. In the interest of your privacy, if you could contact the Patient Relations Department via one of the methods mentioned above and they will be able to advise you how to progress your concerns and of any further information requirements.

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Update posted by Thisisnotcramping (the patient)

After some weeks’ deliberation, this is the only response I can give at present:

I do genuinely want to contact you. I can see the benefits – both for Women’s Services staff and for other women treated there.

However, it is now very difficult for me to engage with the hospital as I feel uncertain they will be open with me. I was told by a health professional that there would be no pain, was not offered sedation or GA, didn’t even know it was warranted / possible. I then suffered the agony of my uterus being cut away time after time. I have struggled to rationalise why no one in the room was shocked by my pain. If the norm was no pain, surely my suffering would cause concern or alarm? Instead the team just proceeded.

Considering this after the event (and sadly I do that a lot, as I am unable to rid my mind of this horrific experience) the pain was not unexpected. I just hadn’t been warned about that possibility before it began.

It is hard to engage with the organisation that inflicted that on you. I now know that there are many women who feel the same. Most never make any contact with the hospital, via Care Opinion or any other route. Most step back from supplying feedback, finding it too hard to revisit what was done to them..

Perhaps, given time, I can engage as you wish me to. I genuinely hope so.

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