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Hysteroscopy - injured during hysteroscopy - please read

59 replies

JFT · 17/10/2023 17:03

Hello, I'm new here - please be gentle if I'm getting protocols wrong.

I started this account on advice of a friend who suggested it might be the best place to share my issue.

I'm not a 'mum' (no children). I've not begun the menopause yet but am over 50 and have many gynae issues over the last 20+ years, been under monitoring and regular testing.

Last year, the scanning person told me I have: adenomyosis, several large fibroids inside my uterus and in the muscle wall, PCOS on my left ovary, and a fast growing polyp. She said why isn't your GP or the hospital doing anything about this?

My GP agreed action needed taking and that hysterectomy was the only solution as adenomyosis doesn't resolve with menopause. I was keen to go ahead quickly. But then the Royal Free Hospital discharged me on false grounds that I have elected 'private gynaecology'. I have never had private health care of any type and can't afford that. They then refused my re-referral from GP when she pointed out this error, repeating that they have 'information' I have private healthcare (not true).

So, GP referred me to the UCLH. They scanned and double checked and agreed all the same known issues. They also agreed I need a fairly urgent hysterectomy. But they asked me to come in for the large polyp (approx the size of a large grape 2cm x 3cm) to be removed by hysteroscopy procedure first. I couldn't understand why and argued why, asking if you're taking my whole uterus what's the point of removing the one polyp?

Anyway this is where it gets dark and twisted. The UCLH gynaes lied to me and informed me that a quick walk-in hysteroscopy procedure with no sedation, no anaesthesia, no pain management, to whip out the polyp and send it for biopsy was the first thing to do. They literally mocked me when I requested this to be done under General Anaesthetic (GA) and implied I was being completely unreasonable and advised that GA would needlessly put my life at risk for a minor issue and so they weren't prepared to offer GA. They booked me in for a walk in hysteroscopy and I was advised just to take ibuprofen and paracetamol beforehand.

During the hysteroscopy I was severely injured. It was conducted by only one of the gynaecologists working alone and a technician supplying saline solution, with one chaperone just observing watching me from the other side of the room.

I felt my cervix being opened up and it was uncomfortable but not too bad. I also felt 'rummaging around' feelings that were definitely painful but not horrific. Then, the gynaecologist told the saline person that she 'couldn't see' and to supply more solution, at the same time, I felt the most horrific searing burning stabbing and wrenching pain in my upper left uterus area. I felt as if I was being stabbed by a red hot poker at the same time as there was a tugging and pulling feeling. My uterus started to involuntarily contract and at that point I was unable to breathe. It was the worst pain I've ever experienced at 10 out of 10 (and I've 'been through' a lot). At this point I put my hands on my head in desperation and agony and the chaperone asked 'are you OK?'. Seemingly her asking that had the whole thing called off - as then I immediately felt the stabbing stop and the gynaecologist withdrew all the equipment from my cervix / vagina.

Afterwards I went into total shock and PTSD symptoms, my whole left side and abdomen was numb.

I asked the gynaecologist what happened and she said everything went fine and she had taken some small tissue samples for biopsy. I asked 'what about the polyp?' and she told me 'there is no polyp' and I was confused as it had shown on all the scans. She said there is definitely no polyp to be seen. I had such a bad feeling about her and I also had during the prior consultation, so I just kept quiet and left.

After this incident I went straight home and became chronically unwell and in an emergency health situation. I won't bore all the details but I believe my upper left uterus was stabbed and punctured, that my left ovary and left ureter and other adjacent tissues were injured in this. I was unable to feel any sensation when passing urine as my bladder / urethra nerves must have been affected somehow. I was in chronic pain all around my left flank, heavily bleeding, and was passing a lot of blood in urine. I had also aquired 'klebsiella' a hopsital acquired infection.

I was thrown out of A&E who refused to treat me and said I was lying about the whole incident, that they had spoken to the gynaecologist and she assured them I have no gynae issues whatsoever and she had given me the images to prove it (obv not true). They claimed I was a drug seeker and quite literally threw me out.

Subsequently had to fight for my GP refer me back to the Royal Free where following scans and checks, I had a 1 hour 45 minute sugery under GA to remove the polyp and scar tissues from inside my uterus. But had to wait many months in horrific pain for that surgery and am still now left in chronic pain and daily uterine bleeding (I've now been bleeding every day since July 2022). I'm being medicated with daily doses of mefenamic acid, tranexamic acid, and 30mg per day of Provera, none of which are stopping the bleeding. I'm repeatedly incurring internal infections - kidney / ureter, on the same side as the injury was. But my GP and every single person involved is downplaying it, minimising, and gaslighting me. If I wasn't managing my own iron treatment (high daily doses of iron, folate, Vit C, B12), I would already be dead from blood loss by now.

Am now waiting for an 'urgent' full hysterectomy, with lots of add on issues that would be in line with having been severely injured in the hysteroscopy. MRI scans have shown that my left ovary, ureter, pouch of douglas, part of colon, and internal spaces are all bonded and meshed together with scar tissue. None of that was the case before. But it is being explained away as 'endometriosis' even though it isn't. It's scar tissue and adhesions. My current consultant surgeon will not discuss anything whatsoever with me, including the surgery she already did, and I've not been able to have a single consultation with her - she's very clearly avoiding me to the point that it's laughable and absurd. I mean she is obliged to have appointments with me but she literally doesn't attend them and is playing such silly games. I'm obviously in a 'cover up' situation and so I assume she literally can't speak to me about the harm / injury but she has to do the surgery.

Even worse, other Royal Free staff have told me that there is 'no way' that I was injured during the hysteroscopy to remove the large polyp as this is not a procedure that can possibly happen as it's not part of any form of medical or gynae treatment and that no gynaecologist would attempt to remove the large polyp in a walk in non sedated procedure. They also say if that did happen then it's my fault for consenting.

I feel like I've been totally abused and violated. It's been barbaric and medieval. I feel my life has been put at risk and the whole thing was like one of those old backstreet abortions using coat hangers where women went home and died of infection or blood loss. I've got a solicitor looking into this but he hasn't actually taken my case yet. When they tried to remove the large polyp during walk in hysteroscopy, the UCLH gynaecologists a) lied to me; b) coerced me into something not quite lawful; c) botched it up; d) severely injured me; and now the whole of the NHS is trying to cover up what has happened to me, including my current surgeon. I feel conned and scammed.

Now I need to have this horrific extensive surgery that is way over and above a regular hysterectomy and in the meantime I'm really really ill and in pain and traumatised.

My question to anyone here is - please feedback any thoughts - have you ever heard of such a thing? Is it true that a large polyp would never be attempted to be removed by walk in non sedated hysteroscopy? If my solicitor doesn't take this case, does anyone know a firm that is likely to? Where do I get support for the trauma this incident has caused me (I feel quite literally far far worse than having been raped)?

Also I want to share my story as widely as possible to warn everyone. I think the NHS took a gamble on my life to use me as a guinea pig and see if they can cut costs and cut corners by doing gynae surgical procedures as walk ins with no medication or anaesthesia. I am so ill at the moment, I can't function, but I want to share my story and warn people.

OP posts:
solice84 · 17/10/2023 19:14

I have no advice , just wanted to bump this for you and to say I'm very sorry this has happened to you .

Autumn1990 · 17/10/2023 19:35

I haven’t any advice but do see how this could happen and then you be told it hadn’t happened. I have had similar we told you to x and then later no we said y don’t know where you’re getting x from. But in my case it’s simply to do with admin and hasn’t cause me significant harm although it is delaying treatment for a chronic illness.
I suspect they’ve covered the tracks well.

JFT · 17/10/2023 20:23

I'm so sorry @Autumn1990 that you've had one of these gaslighting experiences too.

Life feels very unfair when people who have positions of power or authority or who can make or break our lives behave deceptively and deceitfully.

I'm on the ASD spectrum so for me this whole situation has extra layers of incomprehension, confusion, and pain. I feel like they chose me on purpose to experiment on to see if it was possible, if they could get away with it, or if they can do it to others. Then they blame my disability and mental health for me complaining that I've been severely harmed.

I'm so angry that I'm not sure how much different they are than Hitler and Mengele's so called 'medical experiements'. That's why I'm going to push my complaint and push my legal case and push my publicity for this situation - so that no-one else (vulnerable) can be this badly hurt. Because this was two gynaecologists operating in a team perpetrating this 'experiment'. And I will name them to the newspapers, to their own registration bodies, to have them stopped.

Meantime I'm depending on the sheer volume of scans and tests to hopefully leave a footprint and collection of data that they can't simply 'disappear'. And I'm urgently depending on the new cons gynae who is acting all levels of shady and playing silly games to save my life, understandable she's been landed with someone else's mess and very clearly doesn't want to know about it never mind give legal testimony but now she IS involved and I'm in need of urgent surgery that is meant to be within four weeks. Lets see.

OP posts:
Phunkychicken · 17/10/2023 20:35

Whilst I'm sorry this has happened I've had 2 polyps removed at my GPs, with just the GP and I and no pain relief. It's quite common. So them saying this is true.

GCAcademic · 17/10/2023 20:39

I feel traumatised just reading that. I’m really sorry, OP.

It is the norm for this kind of gynae procedure to be done without anaesthesia, though. But you can insist on IV sedation, they shouldn’t have told you that it isn’t possible.

XelaM · 17/10/2023 20:44

Irwin Mitchell are a good firm of solicitors for clinical negligence

Wishitsnows · 17/10/2023 20:45

That is horrific. So sorry you had to go through this. Not surprising you were clued to though and treated that way in A&E. so many stories of this type of thing. Make sure you go through the complaints process but don’t be surprised if they continue to lie.

Holesinmysox · 17/10/2023 20:54

left ovary, ureter, pouch of douglas, part of colon, and internal spaces are all bonded and meshed together with scar tissue.

But it is being explained away as 'endometriosis' even though it isn't. It's scar tissue and adhesions.

Advanced endometriosis is scar tissue and adhesions. Your descriptions are entirely consistent with advanced (stage 3/4) endometriosis, which itself is entirely consistent with adenomyosis. As the endometriosis progresses, it becomes fibrous and this turns into adhesions. Consequently your pouch of Douglas will become obliterated (a medical term for it being so meshed together that it cannot be visualised) and organs such as your ovaries, ureter, colon will all become fused.

Many doctors encourage hysteroscopies without pain relief which is shocking. They should be done under sedation although some hospitals will use GA.

To me it sounds as if you have deep infiltrating rectovaginal endometriosis and you need multidisciplinary excision surgery in a BSGE centre.

RosesAndHellebores · 17/10/2023 20:55

Have you made a formal complaint with dates, times, names, copied to your MP and have you requested a full copy of your medical records?

Morechocmorechoc · 17/10/2023 20:58

Have you made a formal complaint?

HughCanoe · 17/10/2023 21:00

You need to contact these campaigners www.hysteroscopyaction.org.uk/

HughCanoe · 17/10/2023 21:01

This is what they are about:

We are a group of UK patients who have had hysteroscopies and/or womb biopsies. We are concerned that a sizeable minority (5%-25%) of UK hysteroscopy patients have reported severe pain during these outpatient procedures.

We are campaigning for all hysteroscopy/uterine biopsy patients to have

Full written information about the hysteroscopy/biopsy procedure including the risk of severe pain
Safe and effective pain relief
A genuine CHOICE of no anaesthesia; local anaesthesia; safe monitored conscious sedation; epidural; general anaesthesia
NHS Hospital Trusts are currently financially incentivised to perform at least 70% of hysteroscopies in outpatients rather than under general anaesthetic. This means that patients are not always given a CHOICE between an outpatient hysteroscopy and a GA

AnyFucker · 17/10/2023 21:18

I have completed a questionnaire on that website to contribute to the campaign after I had a traumatic hysteroscopy in 2021.

I am sorry you went through that, op. It is barbaric.

JFT · 17/10/2023 21:32

AnyFucker · 17/10/2023 21:18

I have completed a questionnaire on that website to contribute to the campaign after I had a traumatic hysteroscopy in 2021.

I am sorry you went through that, op. It is barbaric.

@AnyFucker

Well done filling out their questionnaire, I have also. It's called something like the Campaign Against Painful Hysteroscopy or something similar.

What gets me the most is the they shouldn't be doing hysteroscopy with no sedation and anaesthetic, never mind attempting surgery. Barbaric is the word.

And for me, this violence and harm was perpetrated in a Central London Teaching Hospital UCLH by a woman, Dr JF, who reckons herself a 'social media' well woman gynaecologist concerned with women who have trauma. Yeah she's given me trauma alright.

OP posts:
AnyFucker · 17/10/2023 21:37

It was a woman who performed mine too. Somehow, that seems worse.

JFT · 17/10/2023 21:42

Phunkychicken · 17/10/2023 20:35

Whilst I'm sorry this has happened I've had 2 polyps removed at my GPs, with just the GP and I and no pain relief. It's quite common. So them saying this is true.

@Phunkychicken

Wow I'm so shocked to hear this.

How can your GP or anyone not surgically qualified do that? Is your GP also gynae qualified? If not, how can they have the skills, training, and authorisation to open up your cervix and cut things out of your uterus?

Also how would they have all the equipment and a sterile surgery room?

What country are you located in please? I'm so shocked and upset to hear this as it's so dangerous.

OP posts:
JFT · 17/10/2023 21:45

Morechocmorechoc · 17/10/2023 20:58

Have you made a formal complaint?

Solicitor is looking into it at the moment. He's hoping there's enough documentary evidence to prove a case. Then it doesn't really matter what anyone says or thinks so much as it's all facts from reports and scans etc.

OP posts:
Alopeciabop · 17/10/2023 21:49

i have had so much shit from the nhs and been gaslit (gaslighted?) myself so fully believe you.

your story brought back a colposcopy last year - surgeon was horrible and was like a medieval dentist set up. No pain relief - fine, whatever, it wasn’t awful…but if a man was having an equivalent procedure we all know they’d be getting local anaesthetic and some painkillers to pop.

but worse than the bizarre, seemingly unsterile procedure with some random woman doing a bad job of chaperoning, walking in and out the room while my bits were exposed to the elements, was the surgeon himself.

he was immediately odd. Think he was hitting on me in my first app but you know when you don’t want to look like a crazy, deluded weirdo. I also really needed the app because I had to pay private because it was urgent and the nhs waiting list was a year long for urgent appointments (?!)

when I saw him for my next app and procedure he was aggressive. Creepy. Rude. Kept pushing for me to get the coil obsessively. Like I was there for potential cancerous cells. Told him I had no interest. He kept going onnn and onnn telling me I should definitely do it and my husband would want it (my husband wants me to be happy and would probably flipped at the fucker if I’d told him about his behaviour but for some reason I just felt so vulnerable and like I had to go along with it all - well I was vulnerable and did. Potential serious illness means you don’t really want to wait a year so you’re in a catch 22)

with great respect, I’d maybe recommend not giving your views on WHY this was done to you though. Saying it was an experiment. Maybe people will disagree but I’d worry that people will just brush you off as a conspiracist if you do. And that might undermine your message and what happened. At least in the early phase of your fight.

I’d probably go to the daily fail and get them to take it on too if they will. Maybe someone can do some digging for you. Request all your medical notes too - not that this is ever easy as they seem to be scstteted all across different computer systems.

sorry to hear you had such an awful experience.

Cicciabella · 17/10/2023 21:50

Ohmy god this is so traumatic. I had z hysteroscopy under G,A for polyp removal, as I'd read somehorror stories. Barbaric, what happened to you.
I'd contact a solicitor rd medical negligence. So sorry this has happened,
How can the UK continue to think this procedure is acceptable without anaesthetic?

JFT · 17/10/2023 21:52

HughCanoe · 17/10/2023 21:01

This is what they are about:

We are a group of UK patients who have had hysteroscopies and/or womb biopsies. We are concerned that a sizeable minority (5%-25%) of UK hysteroscopy patients have reported severe pain during these outpatient procedures.

We are campaigning for all hysteroscopy/uterine biopsy patients to have

Full written information about the hysteroscopy/biopsy procedure including the risk of severe pain
Safe and effective pain relief
A genuine CHOICE of no anaesthesia; local anaesthesia; safe monitored conscious sedation; epidural; general anaesthesia
NHS Hospital Trusts are currently financially incentivised to perform at least 70% of hysteroscopies in outpatients rather than under general anaesthetic. This means that patients are not always given a CHOICE between an outpatient hysteroscopy and a GA

Thank you.

Now I understand. The UCLH gynaecologists were actually scamming me for financial incentive reasons. I'm so angry. They are criminals and they are not humane woman, they have no business working in medicine. What happened to 'do no harm'?

Also not only did they cause me pain but they severely wounded me leaving me injured, requiring one corrective surgery under GA that took 1hr 45 mins, and requiring a huge surgery.

The surgery I need next is to remove my uterus, fallopian tubes, ovaries, cervix, part of vagina, peel back my ureters and put stents, cut out tissues from the cavity outside my uterus and between intestines and take a section of my colon. None of that was necessary before. So they haven't saved any money at all.

OP posts:
Lovemusic82 · 17/10/2023 21:57

Sorry you went through this. I have endless issues with gynaecology, I had a hysteroscopy without GA and had biopsy’s taken, it was a horrible experience that I wasn’t prepared for, I then had an ablation which left me in so much pain, went back to A&E several times, sent back to gynaecology to be told I was making it up. Have had endless issues since and finally go an appointment with gynaecologist next week but they have sent me a letter telling me I may have to have another hysteroscopy during my appointment. I am not happy with theirs as last time was awful and I don’t feels there’s anything to gain by doing another. I’m sure I have endo but they refuse to investigate. I am hoping to get the go ahead for a hysterectomy.

EliflurtleAndTheInfiniteMadness · 17/10/2023 21:57

That sounds horrific. I'm so sorry you were put through all that and then treated like you were crazy and it didn't happen. Some doctors really aren't fit to be doctors. As for you consented, consent isn't a free for all and is supposed to be informed consent, which it really didn't sound like they had.

There's several studies that show gender bias in the treatment of pain, men are more likely to be believed and are offered stronger medication than women reporting pain of the same intensity. I suspect doing gynaecological procedures without adequate pain relief is a reflection of this type of sexism. There's also studies showing racial bias in the treatment of pain.

JFT · 17/10/2023 22:00

Alopeciabop · 17/10/2023 21:49

i have had so much shit from the nhs and been gaslit (gaslighted?) myself so fully believe you.

your story brought back a colposcopy last year - surgeon was horrible and was like a medieval dentist set up. No pain relief - fine, whatever, it wasn’t awful…but if a man was having an equivalent procedure we all know they’d be getting local anaesthetic and some painkillers to pop.

but worse than the bizarre, seemingly unsterile procedure with some random woman doing a bad job of chaperoning, walking in and out the room while my bits were exposed to the elements, was the surgeon himself.

he was immediately odd. Think he was hitting on me in my first app but you know when you don’t want to look like a crazy, deluded weirdo. I also really needed the app because I had to pay private because it was urgent and the nhs waiting list was a year long for urgent appointments (?!)

when I saw him for my next app and procedure he was aggressive. Creepy. Rude. Kept pushing for me to get the coil obsessively. Like I was there for potential cancerous cells. Told him I had no interest. He kept going onnn and onnn telling me I should definitely do it and my husband would want it (my husband wants me to be happy and would probably flipped at the fucker if I’d told him about his behaviour but for some reason I just felt so vulnerable and like I had to go along with it all - well I was vulnerable and did. Potential serious illness means you don’t really want to wait a year so you’re in a catch 22)

with great respect, I’d maybe recommend not giving your views on WHY this was done to you though. Saying it was an experiment. Maybe people will disagree but I’d worry that people will just brush you off as a conspiracist if you do. And that might undermine your message and what happened. At least in the early phase of your fight.

I’d probably go to the daily fail and get them to take it on too if they will. Maybe someone can do some digging for you. Request all your medical notes too - not that this is ever easy as they seem to be scstteted all across different computer systems.

sorry to hear you had such an awful experience.

So sorry you've been through this crap from the NHS too :(

There's some really sick and weird people working for the NHS same like any huge dysfunctional institution (which it is even though there's some amazing lovely people). I hear what you're saying about sounding like a conspiracy nutter but when you go through these things you suddenly realise there is something going on... obv it's about money money money and not personal to me.

I've had colposcopies and stuff where my uterus is opened up and there's people drifting in and out of the room... like huh... what about the airborne bacteria and disease control etc?

We have been rendered powerless by people behaving badly and there seems to be no recourse. This is what gets me the most.

OP posts:
JFT · 17/10/2023 22:03

Lovemusic82 · 17/10/2023 21:57

Sorry you went through this. I have endless issues with gynaecology, I had a hysteroscopy without GA and had biopsy’s taken, it was a horrible experience that I wasn’t prepared for, I then had an ablation which left me in so much pain, went back to A&E several times, sent back to gynaecology to be told I was making it up. Have had endless issues since and finally go an appointment with gynaecologist next week but they have sent me a letter telling me I may have to have another hysteroscopy during my appointment. I am not happy with theirs as last time was awful and I don’t feels there’s anything to gain by doing another. I’m sure I have endo but they refuse to investigate. I am hoping to get the go ahead for a hysterectomy.

So sorry to hear this @Lovemusic82

You're being messed around the same as I was and so many of us seem to be.

What is the point of them wanting to do another hysteroscopy on you?

I found out that they can see everything nowadays on MRI imaging.

Following my dispute with the hospitals they gave me three types of different abdominal / gynae MRI scan all done in one session (took about 45 mins) and apparently this can see 'everything' way better than any other form of imaging. Well, why didn't they do that in the first place? I can't imagine the cost is much different?

OP posts:
2jacqi · 17/10/2023 22:07

you might first want to obtain all gynae notes, x rays reports, surgical consultations, lab results, mri reports and any emails about your case from each and every doctor who saw you and all of the hospitals concerned as well as copies of all gp letters received from hospitals and sent. then I think you might just be wise to go to a medical negligence solicitor for advise. all those requests must be sent out at the same time but please expect pages to be removed. they are renowned for doing this if it looks like some litigation might be about to happen so pay attention to the date order of all documents from each hospital and make sure they tally with hospital visits and ops. start with "I hereby request ....."