Painful hysteroscopy

[Exonian]

2 hours ago, Fiona said:

This resonates massively. I experienced similar levels of pain when I had a hysteroscopy and endometrial biopsy. I was surrounded by FOUR male doctors and not one of them made any attempt at compassion. Thank god there was a female nurse there too - she held my hand throughout. Afterwards the Doctor rolled his eyes when I told him it was the most painful thing I had ever endured. It was a horrible, horrible experience. I cannot believe we are not even warned.

 

This is what happened to me. I did not have a compassionate nurse, and I might as well have been a piece of meat who caused both the nurse or healthcare assisitant, and the female Dr,  ( neither or whom introduced themselves ) inconvenience by passing out due to the indescribable pain. I have not had children and was post menopausal at the tie of my barbaric procedure. I also had really bad period pains from day one, all of which are contraindications for OPH.

[Dean]

It's a bit long, but here are some of my thoughts ...

 

[Nik]

I had this procedure 15 days ago and I can still feel the pain not in my body just in my head. It makes me shrink inside everytime. I try not to think about it. I was nieve from the get go thinking the ibrufen would help. The silly leaflet does not give a true indicatiin of what follows.

I had a local injected inside which was like having a dental injection it stung. The dr explained all as she went along. But the pain felt like someone was sticking a hot knife inside and jigging it about. I have had 3 children all natural and the pain is nothing like labour pains. It truly was bloody painful.

My legs were shaking and the dr said its the adrenalin. 

When i left the room i said to the receptionist, never again would i put myself through that it was the worst pain I have ever felt. It should not be done this way. Ever.

Never again 

 

[HelenH]

Hi Nik,

Thanks for your post. How gruesome, I'm so sorry. We know that many women similarly report this intense pain and just have no idea what they're going to experience when they agree to the procedure.

We've been working with the amazing women at Hysteroscopy Action to build on their campaigning to demand safer and pain free care with women being fully informed before they consent.

@Claire Cox and I have been a little deflected with the pandemic but we're very keen to re-active our work on this important issue. Thanks for sharing. 

We must stop this happening.

Helen

[Nik]

Hi Helen hopefully you have success because without scaring my daughters from having this procedure(hopefully that never happens) how do you say do not have it without a ga. 

The practice needs to change asap.

 

Good luck

[Carrie]

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 ... 

[HelenH]

Carrie, this is a ghastly experience. And truly shocking to use Covid 19 as an excuse. We will be refocusing our work with Hysteroscopy Action. Have you been in touch with them? They’re amazing and so supportive. 

Thank you for sharing your experience. 

@Claire Cox @Steph O'Donohue 

[Clarke]

Hi Carrie Sorry to hear of your awful experience. Sadly not that unusual. Disgraceful that COVID 19 is being used to justify denying women pain control. Please contact the Campaign Against Painful Hysteroscopy they have a support group on Facebook. I’ve been a member of the closed group for 2 years now. Be kind to yourself it’s not your fault . XX

[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. 

 

[Jax8008]

Oh my goodness, I did a google search as I'm having hysteroscopy done under GA next Friday and came across this forum.  Oh how I wished that I had seen it sooner.  

I had a bleeding discharge, 10 years post menopause, about 6 weeks ago and was referred for a hysteroscopy.  If I had known then just how painful the procedure was going to be I think I would have demanded for it to be done under GA at the time.  I have got quite a high pain threshold and so was quite shaken with the experience, even though the doctor was really good, she just was unable to get into my womb to have 'a good look around'.  I was in a lot of pain for the rest of the day and well into the night.

I have only read the first couple of replies but am going to take a further look back to see if there's any advice I can glean from them.

Thanking you in advance

Jackie

[Carrie]

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. 

 

[nervouspatient]

Recently, I had to undergo a hysteroscopy in France. This was booked and completed within three days, under GA and I was kept in the night afterwards in an incredibly clean hospital with attentive nurses.

I had no pain on coming round. The surgeon came and spoke to me a couple of hours afterwards. I asked he performed it under LA, and he said no as this was barbaric and would be too painful for the patient to tolerate...

[HelenH]

Thanks for your comment. That’s a really strong response from the surgeon and confirms what patients have been saying in the U.K. for years. 

[PatientSafetyLearning Team]

Shared anonymously:

"Six years ago I underwent hysteroscopy. Due to very heavy periods they wanted to investigate. I had an LA and the pain was bearable for me. But what really shocked me was that, while I was still in position, with my legs in the air, they said they were just going to insert something that would help with my periods. It wasn't really a question. It was a Mirena implant. They passed me the form to sign while I was still reclined which I thought was odd at the time but I trusted them. It was only when I came home that I could actually research what I had agreed to, something I would have done beforehand usually. Thankfully the Mirena has worked well for me but I know that isn't the case for all women. I still can't believe the approach used to get my 'consent', it certainly didn't feel informed."

[HelenH]

Shocking. Thanks for sharing. How can that be properly informed consent? 

[Mark Hughes]

The Campaign Against Painful Hysteroscopy have highlighted on Twitter that they will be a Adjournment Debate in the UK House of Commons on this tabled by Lynne Brown MP later today. 

An Adjournment Debate runs for 30 minutes and takes place at the end of a day's session in the House of Commons. They provide a opportunity for MPs to raise an issue in the chamber and receive a ministerial response. The times for these debates are always a bit fluid, but its likely to take place between 4.00-5.30pm and you can watch this on www.parliamentlive.tv or the BBC Parliament Channel on Freeview. 

The full transcript of this debate will be posted on the hub when it becomes available.

 

[Mark Hughes]

You can now find a full transcript of yesterday's debate in the House of Commons on the hub via the link below: 

 

[Alice]

I have an outpatient appointment next week. I am terrified! I know my body and know from previous experience (smear tests etc) that the hysteroscopy is going to be impossible for me without a GA. Apart from saying I may have this procedure next week I have received no further information. I asked my GP to make sure in the referral that I would need some form of anaesthesia. I called the Consultants Secretary this morning to try to find out more and explain my situation. She simply said to discuss it with the Dr when I was there next week. I am quite frankly beside myself. I will go next week, but I am not going to be pushed into having this procedure - (which I know I must have, and want to have) without a GA, or some form of anaesthesia other than a LA. The delay for another appointment in Covid times will just prolong my agony. My poor husband is so sad for me.

 

[Claire Cox]

3 hours ago, Alice said:

I have an outpatient appointment next week. I am terrified! I know my body and know from previous experience (smear tests etc) that the hysteroscopy is going to be impossible for me without a GA. Apart from saying I may have this procedure next week I have received no further information. I asked my GP to make sure in the referral that I would need some form of anaesthesia. I called the Consultants Secretary this morning to try to find out more and explain my situation. She simply said to discuss it with the Dr when I was there next week. I am quite frankly beside myself. I will go next week, but I am not going to be pushed into having this procedure - (which I know I must have, and want to have) without a GA, or some form of anaesthesia other than a LA. The delay for another appointment in Covid times will just prolong my agony. My poor husband is so sad for me.

 

 

[Claire Cox]

Oh Alice,

I bet you feel scared stiff.  I know there are many women on this forum who may be able to offer some words of advice/comfort to you.  

@Katharine Tylko

I am glad you have found our site as this will put you in touch with women around the UK who understand your anxieties and are battling for a safer hysteroscopy.

[Katharine Tylko]

Hi Alice - I'm Katharine, one of the admin of the Campaign Against Painful Hysteroscopy.  Am not a medic so can't give medical advice but can point you in the direction of medical advice.  You're absolutely not alone in having had previous difficult gynae procedures and wishing to be asleep for a hysteroscopy.

The Royal College of Obstetricians & Gynaecologists has issued a statement saying that even during the pandemic women having hysteroscopy are free to choose GA/IV sedation instead of an outpatient procedure.  (See below)  We know of women who've had GA hysteroscopies during the pandemic but others have been offered IV conscious sedation because there's less risk of potentially spreading any covid19.  IV sedation has worked very well in the past for me for various endoscopies I've needed.

Please, if you're on Facebook, the Campaign Against Painful Hysteroscopy has a closed Action/Support group that you are most welcome to join.  If you'd like to do so please send me - Katharine Tylko - a Facebook friend request and I'll add you to the group. 

If you're not on Facebook, please email me ....@....com and I'll try to help regarding your local hospital.

Can totally understand how scary and horrible the idea of being forced into an unsuitable procedure is.  There are loads of choices of ways of having a hysteroscopy to rule out cancer.  Recently one of our campaign members had a GA arranged under the 2 week-wait rule.  Please don't feel pressurised into something that's medically unsuitable. 

All best,

Katharine 

[Alice]

Thank you Katherine. Friend request sent ......

[Tracey]

Thank you so much for all the moving and courageous women who have posted there stories. I am due a hysteroscopyyand biopsy tomorrow and  are terrified. However I know feel more confident and in control with all the information to be able to not give consent unless under a spinal block. I will let you all know how I got on. Thank you .xxxx

[Birdy2020]

hi all 

I had a hysteroscopy yesterday 1pm after many sleepless nights worrying and anxiety going through the roof I got to hospital yesterday and had to go in alone my partner was not allowed even allowed the reception present guidelines for safety, I was extremely teary and petrified after reading some of the reviews 

I explained to consultant and nurses that I was petrified they were fantastic.

I took 2x cocodomol and 1x naproxen an hour before appointment as advised in the letter.

I had to sit in a chair gown over my lower half of body.

To which they began the procedure taking me through it starting with entering the vagina with the small tube/ camera going up into the cervix uterus and womb.

I can honestly say this procedure was a breeze compared to all my worries tears and anxiety do not worry about having this completed it has to be done and is not a procedure needing Ga unless underlying health issues, the nurses fully reassure me and I breathed my way through it for me a smear test is more uncomfortable.

Forget about dignity etc having a smear was worse for me and if I had to have one done again. I would not be worried at all.

 

Hope this helps any ladies that was worried like I was.

[ShropshireJos]

I'm pleased your procedure went well. Sadly underlying health conditions are not the only reason for a GA being necessary.

It is vital that every woman is given the information and opportunity to make an informed decision about the pain relief they choose for their hysteroscopy.