Carrie

On 24/07/2023 at 20:01, NickyG said:

@EmilyGee I feel so sad you went through this in so much pain. I feel you are totally correct that you shouldn’t have been sent home like that. I’m surprised you didn’t have at least a local anaesthetic during the procedure. 
 

My experience seems to be very rare but it shouldn’t be. These procedures can be carried out well and with minimal pain. Is it cost related? Do they do it on the cheap? By not giving anaesthesia I mean? 
 

It’s certainly been an eye opener listening to other experiences and I hope there’s a breakthrough for women one day 🤞

I think that you may find that most of us who experience painful hysteroscopies do so at a NHS hospital where it is usual not to be offered any pain relief. Those of us who actually received a patient information leaflet are advised that it's just like period pain and we may want to take a couple of paracetamol prior to the procedure. Some of us have a hysteroscopy sprung on us after  having an ultrasound scan and are not even aware of what the procedure we experience actually is. 

Sadly it does all seem to come down to cost,  but it should not mean that women who can't afford private health care should suffer unduly and, who knows, may die as a result of not returning for any further treatment in the light of their painful experience. 

2 hours ago, HelenH said:

Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

 

I have not been able to consent to medical procedures since my hysteroscopy in 2020, including cervical screening. I didn't complete the bowel screening kit either in case I needed to go for a follow up - all because of the attitude of the hysteroscopy staff. Even Covid vaccination was a nightmare - my autumn vaccine took nearly 3 hours to complete due to time it took to trust the staff. Hysteroscopy should be banned in my opinion.

49 minutes ago, Katharine Tylko said:

Hello Carrie - It's your body so it's your choice what happens to it.  Having said that,  I'd hate the Campaign Against Painful Hysteroscopy to prevent anyone's cancer from being diagnosed early.  Hysteroscopy is currently the best test to rule out womb cancer - but there are other ways of doing it than just outpatients or general anaesthetic.   I'm not a doctor so can't give medical advice but I can say that some hospitals have super-modern ultra-sound machines and I would ask about these.  Also, please ask about the options of spinal anaesthesia/ epidural/ MRI and the ArquerDX urine test for womb cancer.  I just want to make sure that the unlikely presence of womb cancer gets ruled out and that an explanation is found for the bleeding.  Am so sorry you've got caught up in this.

   

Hello Katherine,

It's not the Campaign Against Painful Hysteroscopy that's preventing me from having the procedure, it's having a personal barbaric experience of it myself.

It may be the best procedure for ruling out womb cancer, but if women can't tolerate it due to lack of pain management then the procedure is useless.

I do wonder how many women have said 'no' to having a second or more hysteroscopies because of previous experience??

Gynaecologists need to remember that they do not have a second chance to make a good first impression!

Brilliant work being done by the campaign - great to be reassured that I'm not the only woman who has experienced this. Thank you for all your hard work - so appreciated!

Hi everyone,

I've recently had a post-menopausal bleed and reluctantly visited my GP today.

We had an discussion around the next steps and I've opted for ultra sound scans which, having had before, I know I am comfortable with.

I have stressed to my GP that I will never have another hysteroscopy again, not even under general aesthetic, and she has accepted my decision.

Although she did mention that I would have to have that discussion with the gynaecologist at the scan appointment, to which I replied that there will not be a discussion as I have already made my mind up.

Why will I never have one again? because of my traumatic and painful experience from my first hysteroscopy.

Well done (not) that gynaecologist!  

I will be taking along the green top guidelines for hysteroscopy along with me to the appointment in case someone need reminding of their responsibilities and my rights.

Take care everyone xx

11 hours ago, Dawn said:

I had this procedure on Monday and i consider my pain threshold to be pretty good. It was brutally painful. Horrendous. On the pain scale, on a par with breaking my back - although obviously a totally different type of pain. I felt faint and it was breathtakingly agonising. I cried throughout and have NEVER cried because of pain like that before 

Hello Dawn,

So sorry to hear of your brutal experience at the hands of the NHS; sadly you are not alone. 

Please seek support if you feel you need to speak to someone about your experience; I wish that I that I'd had the courage to seek support as I now struggle dealing with the NHS for other issues such as my Covid-19 vaccinations and health check. Thankfully I have a supportive GP surgery.

Not all NHS staff behave like this so please don't let this experience put you off seeking treatment for any other issues, most of the staff are supportive.

Thank you for your reply.

I've had to leave my trusted GP behind as I've had to move house. Although I've registered with a new practice and had a new patient telephone conversation with a GP I don't know how much I can trust them to understand my feelings.

I've drawn up a list of questions around the process, such as will the NHS practitioner touch me - this triggers fears of being held down as in the hysteroscopy. I also want to know what escape routes there are if I just need to get out  and will any male practitioners be there - I have a fear of being violated as was the case with the male gynaecologist who did not stop the procedure when asked.  And then there's the how do they manage people who faint or vomit or just end up being stressed out. I'll email/post these over to the practice nearer the time.

In the meantime, I'm trying not to worry and am practicing breathing exercises ready to try to soothe myself. 

I do hope that  the staff at the vaccination centre have been trained to support people, but then I thought that about the outpatients hysteroscopy. I do worry that it will be another conveyor belt scenario. 

This vaccination is too important for staff to dismiss patients' fears around needles and trust in NHS practitioners. 

with regards,

Carrie 

On 21/01/2021 at 17:46, HelenH said:

Hi Carrie, Good question. Maybe submit to the CIEHF so they can include this in their work? https://www.linkedin.com/posts/noorzamanrashid_the-economist-on-twitter-activity-6750290388721926144-h8XV/ Helen

It looks like you have to sign in to submit an answer - I'm not on Linkedin. 

Is there another way of asking the question do you know?

22 hours ago, HelenH said:

Hi Carrie,

I wonder if you shared your concerns with your GP they could provide you with information and support - including ensuring that the vaccination is given to you in a way that avoids any distress. 

Best wishes, Helen

Hi Helen,

I've mentioned this to the practice, they have suggested Diazepam, but this won't be possible as I have to drive there. They weren't forthcoming in replies to my queries, I still don't know if I'll held or if I'll be able to lie down to avoid falling if I faint. Same brushing off as I got with hysteroscopy queries which doesn't inspire confidence!

Take care, Carrie

Is anyone else, who has experienced a painful hysteroscopy, now fearful of having the Covid-19 vaccination due to distrust of NHS staff?

I'm struggling to find any answers to my questions about the vaccination procedure - the thought of being touched by an NHS practitioner is terrifying as a friend says that they hold your arm whilst injecting! The thought of this brings back the memories of my hysteroscopy. Do they have to hold you?

I've written down a load of questions for the vaccination procedure, but worried that my worries will just be dismissed and I'll be seen as a nuisance and staff won't have time to support me - just like the hysteroscopy.

Having therapy, but not really helping. I want the vaccine, but no idea how this will happen as I'm so frightened.

I am absolutely terrified at the thought of having to go for a vaccination and having to try to trust NHS staff after a traumatic experience of a procedure last summer yet I know that having the vaccine is so important to keep myself and everyone safe. 

What are the plans to support the terrified and needle phobic during the vaccination programme?

Lovely to hear that you had a positive experience and local anaesthetic.

I do hope that everything goes well for you in the future. 

I had to go through the experience, like many women, without any anaesthesia, and taking Ibuprofen didn't help; hence horrific pain. 

43 minutes ago, PatientSafetyLearning Team said:

@Birdy2020 thank you so much for taking the time to share your experience on the hub. Many women, like you, do not experience high levels of pain during hysteroscopy and it is wonderful to hear positive stories. The levels of pain differ so greatly and it can be difficult highlighting the trauma that has been felt by many, without causing anxiety for others, who may not have any difficulty with the procedure. It sounds like, importantly, you felt informed, able to speak up and in safe hands.  

Surely all women are entitled to pain free hysteroscopy? 

The problem many of us face is that we don't have the information before the procedure so we can't make an informed choice. Most women don't have relatives working in the NHS who can give them the heads up as to what to ask. And we can't have any anaesthesia or even basic pain relief - and women don't know that this is wrong. Many women are told to take paracetamol or ibuprofen - I wouldn't know how to access cocodamol or naproxen, how do women get hold of this if it helps? 

Hello Jackie,

It's good to hear that you have been offered another way to have the procedure. Fingers and toes crossed that it all goes well, and from what I've read it seems to. Hopefully you'll have an answer to your issue and a way forward with any treatment required. 

I do wish there was a risk assessment that they could do to work out the chances of the procedure being painful - such as post menopausal, no vaginal births, that sort of thing. I also wonder if there is any data on which symptoms trigger a painful experience or if there are any tweaks to the way it's done that impact on the failure rate. 

It must cost more money the more times they have to try - and the cost of us having more than one appointment, even if we decline another attempt. 

Take care,

Carrie. 

Just a quick update: biopsy results show nothing sinister or malignant - phew!

But ... they have given me another appointment 'to discuss hysteroscopy and insertion of Mirena coil plus or minus endometrial polypectomy.' (scans have shown fibroids).

I'm already worrying even though it's 5 weeks away.

So, I decided to be proactive and I contacted the Nurser Hysteroscopist and had a chat with her. Apparently the doctor I saw has now left so I won't see him again. We had a long conversation about my previous experience and discussed a possible way forward for the next appointment. She says that she has made a note of everything agreed and I have to ask for her when I get there.

At the moment I haven't cancelled the appointment, but I'm concerned that they will try to persuade me to try again for the procedure - and I'm not even sure that I want a Mirena fitted. If I refuse the Mirena will I just have to out up with the heavy blood loss until the menopause?

The question is: do I trust them enough to go to the appointment or not???

I'm planning to speak with my GP about it all, but she's on leave at the moment. 

Hello,

Following very heavy bleeding and ultrasound scans I was referred to Bishop Auckland Hospital and attended the appointment on 16th June 2020. 

Prior to the appointment I received no information so I attended with no idea of what to expect. My GP did say that they might fit an IUS during the appointment and that they would do a biopsy to check out the thickening of the womb that had been spotted on the ultrasound scan.

So, in order to find out more I looked online to see what information there was - I was surprised at the range of responses to a biopsy and hysteroscopy. I was anxious as I entered the hospital and just found it all too much.

The nurse tried to reassure me that it would be ok and that the doctor, a man, was nice. The doctor was a man - they did not take on board that I did not wish to be touched by a man; should I have had a choice?

He took the notes that I had prepared for the appointment with all the details of what had happened and the medication that I was taking.

I was never asked to sign a consent form; should I have been asked to sign especially if they could see the state that I was in? In my profession it's a case of: if it's not written down then it didn't happen.

I was told that they didn't offer any anaesthesia due to the pressure of Covid-19 - is this going to be an excuse forever?

I was taken into a room and prepared for the procedure. My legs were shaking so much; the nurse kept telling me to breathe and to push down. The doctor proceeded to carry out an internal examination - never in my life have I been so mortified that a stranger should do such a thing. He then proceeded to carry out the biopsy as I'd only reluctantly agreed to this as it was a priority to find out the cause of the bleeding.

It was the most horrific pain I have ever experienced - and no the nurses talking and trying to hold my hand did not help. The doctor just pushed the instruments in and I've no idea what they were as he didn't bother to talk through what he was doing - does anyone else find that someone explaining things helpful? If I knew when things were likely to have been painful then I could have better timed my deep breathing.

I am so worried about having to go back for the results and seeing the same people again.

I am still feeling sore inside (21.06.20) but no I'm not going to find out about that as not doubt there will be more pain. I am dreading having to go back: I'm planning to speak with my GP to see what the alternatives might be.

I'm usually an outgoing, happy, confident person but now I feel violated, as well as physically and mentally abused.

How long do we have to put up with corporate violence towards women by the NHS???

I'll keep you posted ...