Hysteroscopy BBC Story

[IVFWarrior40]

Morning all, I have just been watching the BBC news, and in particular a story about the horror of painful hysteroscopy procedures.
This story really hit a nerve with me and I felt compelled to connect with others who have been through this.

Back in 2014 I was about to embark on my IVF journey when a scan revealed suspected polyps in my uterus. I was referred for a Hysteroscopy. I was told that it would be very straightforward and I wouldn’t feel any pain but it might feel a little discomfort.
My experience was quite the opposite.
It was the most painful thing I have ever had to go through (and I have been through child birth). Like the lady on the news said, it did feel like a form of torture. I remember gritting my teeth through the entire thing and squeezing the nurse’s hand so hard she had to ask me to stop. I was close to passing out with the pain.

At no point was I told that stopping the procedure was an option. In my head I knew this had to happen in order for me to have a chance of having my own child. I was desperate and would do anything to make that happen. I guessed I assumed this was the normal way to feel during the procedure so I accepted it and fought on.

I do not accept what the consultant on the news was saying. She calmly said that patients can ask for their procedures to be stopped at anytime. Clearly she has no idea what women in these positions are going through. I endured the pain because I felt I had no choice. This is what I had to do to have a chance of baby. St at no time did the consultant performing the operation recognise I was in pain and ask if I wanted to stop. This aside, I shouldn’t have had to endure that horrendous pain. A simple anaesthetic would have taken the pain away.

Women are already going through enough mental anguish, worry and anxiety for many reasons when they attend for a Hysteroscopy. They don’t need the added physical trauma this procedure inflicts, especially when it can be so avoidable.

I remember being taken to the recovery room. My husband came in and I just burst into tears.

I made a complaint to the hospital. The feedback was that during the procedure I could have asked for it to be stopped. I was so angry.

This was 10 years ago but this story has really struck a nerve with me. I can’t believe that this is still happening to women ten years on. Are we still living in the dark ages? Just horrible. ☹️

Yes, my experience was the same. I am sorry this happened to you. I didn’t ask them to stop either, but I screamed blue murder at the awful pain, and she eventually did. It is medieval and barbaric. At no point was I told that I could ask for a GA, but that is exactly what I do now. (I need to have annual hysteroscopies because of my genetic cancer risk: I have been very clear that I will not undergo that procedure without GA again, and they have stopped asking).

Lots of women have no pain at all (and I expect they will be along in a minute!) But it’s clear that it is an intolerable procedure for some, and clinicians should be honest about that rather than gaslighting us with that “most people tolerate it” gaslighting crap.

I'm so sorry, that's horrendous . When I had a hysteroscopy two years ago it was done under GA and the consultant says he always does them that way so as to avoid any discomfort for the patient. I think this strategy should be made standard practice, or at least some form of anaesthetic/pain relief if GA is unsuitable.

I suspect there is an element of misogyny involved, as with so many women's medical
procedures. I doubt men would be expected to endure something similar without pain relief and agency to stop the procedure.

It’s horrible.
I am a doctor and I am so embarrassed… medicine has a history of minimising women’s pain.
I do gynae procedures ( pipelles and IUCD insertion). I hate doing them but I do because I want to help. I don’t do hysteroscopies.
Hysteroscopies can be done with iv sedation and gas but it’s not routinely offered… it’s appalling.. I always tell women that they are in charge when I do a procedure and if they say stop I will.

Thanks all for your replies.

Vinvertebrate - I’m sorry this happened to you too. I would also insist on GA if I ever had to go through this again. Yes, I’ve also heard some women find it tolerable. But the hospitals should be listening to the many who do not tolerate it well. I can’t explain why some tolerate it and some don’t, I only know the immense pain I felt. I’m actually considering writing to my MP to bring this topic back to the forefront.

PressedOnion - I completely agree. It should at the very least, be offered as a choice for the patient. It sounds like you have a really good consultant.

Women shouldn’t even have to be put in a position where they are required to ask for a procedure to be stopped because they are already in immense pain.

(Sorry this is long)
This is fresh in my mind as I had an outpatient Hysteroscopy a week ago and I’m still very much suffering the consequences, though mine was for suspected endometriosis investigations rather than fertility purposes.

I think the whole ordeal was grossly under exaggerated not just the pain but the procedure itself was sold to me as if it was a slightly more invasive but regular examination. In my referral letter there was the option to ring and arrange for it to be done under GA but it was explained to me that I would be put on a waitlist and it would push back any further treatment. I’m in daily pain with suspected endometriosis and the thought of having to suffer even longer was just not an option, so I continued with the outpatient pathway.
When I arrived, I filled in paperwork with a nurse who noticed my smear wasn’t up to date and the option of fitting a coil was discussed to stop my bleeding issues. At no point was it mentioned that a biopsy would be taken, not in my initial Gyno referral appointment or letter and not until I was already in the midst of the procedure.
So what I thought was to be a quick procedure that I could endure with only paracetamol turned out to be a smear test, swabs taken, hysteroscopy with 3 unsuccessful attempts at a biopsy using suction and then the coil fitted.

I suffered through it and left feeling lightheaded, ghostly white and slightly deceived. The smear and hysteroscopy itself were mostly bearable through gritted teeth but the biopsy was pure medieval torture, even more barbaric once they then fitted a coil.
Now, a week later I’m in constant agony, more than I was before and nothing is easing the pain. ‘Mild, period like cramps’ that they tell you to expect afterwards do not even come close to the agony that I’m in. I can barely function and I’m struggling to look after my child because I’m in so much pain.
I’ve never regretted a medical decision more and if I could go back I’d never make the same mistake of no GA again.

I passed out from the pain of a hysteroscopy and I felt like a fool because I was told all I’d experience was some mild discomfort. It was the single most horrific experience I’ve been through. Child birth without pain relief was more tolerable. Like PPs I didn’t feel I could ask them to stop.

BloodyAngel - I’m so sorry for what you’ve been through and the pain you continue to have. No one should have to go through this.
I also had a biopsy with mine and wonder if that added to the trauma.
You definitely need to see your doctor. You shouldn’t have to put up with that level of pain. I hope things improve for you soon. x

PilgorTheGoat - I am amazed by the number of women coming forward here to share their stories. I’m so sorry it was horrific for you also. It sounds like we had similar ordeals. They really need to do something about this! x

I'm so dismayed, but sadly not shocked, to read your experiences. I had the internal and external ultra sounds yesterday, followed immediately by the consultant telling me I need the biopsies, mirena coil and smear test and I could have them done right there and then with a small amount of local. He repeatedly used the phrase 'if you are scared of a bit of pain, you can have a general'. He was clearly a man, but 30 years ago I'd have risen to the challenge to prove that I wasn't scared - it almost felt like manipulation. However, I opted for a general and will hopefully have it done in the next fortnight. Do any of you have any tips to aid recovery?
@BloodyAngel I'm so very sorry you had to endure and are still suffering, I am sending good wishes x

I had a terrible time with the coil so when they told me I needed a hysteroscopy I asked for at least sedation. They have fought me so hard, arranging appointments and saying 'just try it' but experience tells me they would be pushy even if it did hurt. They have assured me it won't hurt but I know that isnt necessarily true. This fight has been going back and forth since 2020. Recently I saw a new consultant and she said 'I offer all my patients the option of GA, you don't have to explain your reasons to me'. And that was that. After all the battling and frustration and years of waiting. So easy. If only it had always been that way.

I was never offered GA, but was advised to take Paracetamol...

I had biopsies taken, polyps removed and a Mirena inserted, all at the same appointment.

I do have a high pain threshold, I think, but it was effing, effing painful. And seemed to take ages.

Reading the BBC story today is a reminder of how I felt, I did think I had found it more painful than I really should..... Honestly if this was a men's procedure no way would it be carried out just with Paracetamol!

@BloodyAngel I hope the pain goes away soon, it sounds horrendous 😕

This lying about pain makes me distrust medical staff. I am sorry for all who have been treated this way.

Yep had a similar horrific experience, the Dr did eventually stop as he could see how much pain I was in.

The other thing that annoyed me was before the procedure the Dr casually mentioned he would put a coil in. I wasn't even asked!

I said absolutely not, I do not want a coil and he seemed genuinely astonished that I'd said no!

I've got a hysteroscopy coming up and I'm dreading it after a smear test that was excruciating. I was told "just" take 2 paracetamol by the gynae who did the smear test, she had to stop whatever she was doing as I yelled at her the pain was so bad, I've never experienced anything like it.

Reading that article and other women's experiences is really helpful because it gives me more confidence to say no, I want a GA. More women need to speak up about this appalling treatment where we are expected to put up with pain.

I don’t recognise this. I’ve had 3, no issues, discomfort was as bad as it got.

BUT, everyone is different and I think that is the issue here. I don’t think that is taken account of. Everyone knows their own limits and should be listened to. With the current state of the NhS, I expect pain relief for people having “routine” procedures is at the bottom of the list of priorities.

I had one for polyp removal and it was incredibly painful. They had to stop as the polyp was huge and I was becoming very distressed. I had a GA in the end as they found endometriosis and I had that removed too. This was also around 10 years ago.

I’ve had two hysteroscopies this year and both were positive experiences. I took paracetamol an hour before, had local anaesthetic and was reassured that the entonox wouldn’t run out, to breathe away, as that was my concern.
I think a big part of it was down to good communication within the team, being told when to take a few extra puffs, being asked regularly if I was ok.
Far better to prioritise adequate pain relief for ‘routine’ procedures so that more women can cope without a general anaesthetic.

Also going to say…the decision to do without sedation and IV pain relief is often what a doctor may not choose to do.
Decisions are often made by non clinical managers who have a financial imperative. … doing in clinic is a lot cheaper than operating theatre time.

I'm very sorry that people have had such painful experiences.

I think one issue with hysteroscopies is that you don't know what your experience will be until you're having it, iyswim.

I've had two and had a bit of mild discomfort, certainly no real pain. With both I was back at my desk within an hour. There's no way I would have preferred a GA to that.

The ideal would be for the procedure to start and then, if the woman felt it was unbearable, everything stops immediately and she is booked in for a GA.

There's a campaign on X to inform women they can insist on a GA , although hospitals tend not to offer it due to cost and some Drs thinking it's unnecessary.
I refused one due to hearing a friend's horror story.

x.com/hysteroscopya?s=21

I had one with local anaesthetic and it wasn't fun, but it was fine, the staff were lovely and communicative, which helped. I wouldn't have wanted to have a general anaesthetic unless necessary as there are also risks with this and it would've taken longer to organise (it was cancer in my case). When I did research beforehand it indicated that about a quarter of women found them very painful, although I've also seen the statistic of a third, but it was quite difficult to predict who would find it painful. I was told that the procedure could stop at any point if I found it was too uncomfortable. This was ideal for me, but it seems some medical teams are not so sympathetic (mine was all female). The skills and attitude of the medical team is where I think a focus needs to be, ensuring that women who do need a general get one, without unnecessarily scaring those of us who would prefer the procedure without.

I had same. Excessive bleeding on hrt. Doctor sent me for scan which came back clear but with instructions to send me to consultant. GP didn't know why if scan was clear.
I had a call a couple of days before appointment (which I wasn't worried about) from someone at hospital asking me if I needed supported for the appointment. I was confused as to why I needed support but she became vague. I spent next couple of days worrying I was going to be told
It was cancer.
Got to hospital and consultant said not enough progesterone but mirena coil would sort issue. He said everything was fine but womb lining was a little bit thick:; he wasn't worried but would do hysteroscopy to be on safe side. Said he'd just take a few cells like a smear test and insert mirena at same
Time. The appointment lasted minutes and I very much felt railroaded into doing both. I was taken straight down to room. I was told if I wanted him to stop at any time then he would but ultimately he needed to get the cells to check nothing was cancerous and this was only way to do it. No mention of pain killers etc. two nurses held my hands each and it was agony. I have a high pain threshold but I couldn't cope. I wanted to stop but figured if I did then if anything pre-cancerous then it wouldn't be picked up. It was utterly barbaric and I cried afterwards which is unusual for me.
Afterwards I bleed for 2.5 weeks. Couldn't walk out of there or drive so DH had to come and get me. Then laid on sofa in severe pain for a couple of days.
My best friend lives abroad. She was surprised what had happened as in her country it's routine to do it under GA.
I honestly Think I had some form of ptsd for about a month afterwards.
It's barbaric and nhs needs to stop doing it without pain relief and/anaesthetic

Sorry if it has been said, but please sign the petition to stop this barbaric procedure being done without anaesthesia. My hysterectomy was so bad I fainted afterwards.

Hysteroscopy

Having read all of your stories it is clear that there needs to be a more uniform approach.
Many women like myself were not offered any sort of pain relief other than paracetamol. The ones who found it ok seem to have had a local anaesthetic and gas/air. I was not even offered these. I really don’t think asking the consultant to stop the procedure will work for all women (I refer to my points in my original post).
Women need to be given transparent information before the procedure about what to expect. They need to be told that some women do find the procedure the painful and not be told it will be ‘fine’. They should then be offered a choice of pain relief.

Just because two thirds of women (figures from BBC story) find the procedure ok doesn’t mean the other third should be dismissed.

Agreed. Where's the sense anyway in carrying out an unmedicated procedure that may need to be stopped? It's a waste of everyone's time, apart from anything else.

As I said, the guy who did mine didn't actually offer anyone the procedure without anaesthetic, and when I expressed my surprise, he just said he doesn't want anyone to be in discomfort. Furthermore, it was extremely quick - I think I was only out for around fifteen minutes, which clearly benefits the staff involved. They sent me home with codeine, which I never used. He's a good'un.