MEDICAL procedure I didn’t need AIBU?

[Brighton5555]

Hi

I’m really hoping to get some feedback on this post because I don’t know if what I feel is even okay to feel ?

Background - I have dealt with 12 monthly smears due to mild abnormalities in 2018.. because of this I’ve been seen twice in colscopy and received yearly smears ( all appointments attended )

Most recently I went for my 12 monthly smear. I was hopeful this would be clear and I could go back to normal screening.

Unfortunately the smear showed border lines changes otherwise known as CIN1

They do not treat CIN1. They call you in for biopsy but they do not treat if that’s your level of abnormalities because treatment comes with a whole range of side affects and risks …

Following the smear showing CIN1 I attended the colscopy clinic for biopsy and she said that my cervix didn’t appear anymore than that and she felt they really must have looked hard at my smear test sample to determine CIN1 but we would wait on biopsy results

They came in saying actually it’s worse at CIN2 and because of this I did require treatment.

Treatment being a LLETZ which basically is them injecting your cervix and then burning off the cells .. it’s painful, it’s nerve wracking and it has a long recovery with risks.

Being told I had CIN2 I had to be medicated via my GP to go ahead with the LLETZ which was pretty horrific as I wasn’t numbed fully and they had to stop to inject me further. I have also dealt with the after affects of the treatment given.

My results from the lab of the piece of my cervix they cut out to test has come back …

CIN1

CIN1 doesn’t need treatment to begin with. From my understanding it makes no sense for the smear and the pathology to show CIN1 which match but that crucial biopsy at colscopy inbetween showed a more severe level.

I had that awful treatment because I was told based on my results I needed it. It appears now I didn’t .

I’m severely thankful testing showed the lowest level and it’s been all removed but I was put through a procedure I didn’t need

I’m ANGRY

Having just lost a beloved relative to cancer, and having had cancer myself — thankfully, caught and treated by zealous doctors at an early stage — I can’t raise a lot of sympathy for OP.

which worries me that smears in my area now only check for HPV and not abnormal cells anymore

I've had a borderline smear which the NHS won't retest because I'm HPV negative. I can't even find a private place which will do it either.

I have had a hysteroscopy and the finding on the cervix was "normal" so I've had to be content with that. I complained to the consultant who did it about not being able to get a repeat smear but he said they didn't want to "overdiagnose."

This is one of the reasons why I don't go for smears.

There are false positives which do result in unnecessary treatment which causes health problems like miscarriage.

Pre DC's I wasn't prepared to risk that.

These risks should be better explained to women imo.

@HPFA

which worries me that smears in my area now only check for HPV and not abnormal cells anymore

I've had a borderline smear which the NHS won't retest because I'm HPV negative. I can't even find a private place which will do it either.

I have had a hysteroscopy and the finding on the cervix was "normal" so I've had to be content with that. I complained to the consultant who did it about not being able to get a repeat smear but he said they didn't want to "overdiagnose."

You should be able to arrange a private smear at most private hospitals with a gynae consultant.

Also, a hysteroscopy doesn't assess the cervix. It only looks at the inside of the womb and the entrance to the cervix.

My understanding is that a LLETZ is often recommended for persistent CIN I as well as for higher grades of CIN. After 2 colposcopies showing CIN I, I was told they would recommend a LLETZ if a 3rd colposcopy still showed CIN I, even if it hadn’t progressed. And as others have said, the distinction between the different types of CIN aren’t an absolutely exact science.

So I don’t think you have had an unnecessary procedure, given that you’ve had CIN I for a number of years. I’m sorry if things weren’t explained to you properly, however, and that the procedure was unpleasant.

Hope you feel better soon.

I have had LLETZ and after reading all the information I could before the procedure I ensured that only consented to having it done with a general anaesthetic this in my opinion is the best way to approach it as no trauma whilst its being done and I am certain that as the gynaecologist could concentrate just on the procedure rather than my feelings/pain threshold it must have been easier for them. Yes it was a bit unpleasant for a couple of weeks after but at least I do not have the memory of the procedure being done.

I had a LLETZ 12 years ago. I went for borderline changes and was told it was likely CIN1, but it came back CIN3. I was gutted and anxious that all the cells wouldn't be removed. The recovery was ok though (I was at work the day after).
Personally, I wouldn't want the risk of CIN2 being left.
I'm sorry you feel rough afterwards.
If you want some useful online support, Jo's Trust is very good.

As others have said it’s nowhere near as cut and dried as you think OP. The team (and yes it would have been a team of experts) made the best decision they could with the information they had.
I’m not denying it was a traumatic experience for you (and you might want to consider some counselling to come to terms with it), but I don’t believe any mistakes were made.

I know a woman who found a lump in her breast. The biopsy was inconclusive but the mammogram showed thickened areas in both breasts. It looked like cancer. An aggressive form they said. They proceeded to treat it as such. Double mastectomy. The final pathology result? Not cancer.

Some people actually told her to be thankful too. To be grateful. Yes, it's great news, but it doesn't take away that she's gone through life-changing surgery that in hindsight wasn't needed.

So it's ok to be upset. It's ok to be angry. It isn't nice and it isn't fair. All that stress and worry. I would recommend counselling. It helped my friend accept why it happened/had to happen.

@felulageller

This is one of the reasons why I don't go for smears.

There are false positives which do result in unnecessary treatment which causes health problems like miscarriage.

Pre DC's I wasn't prepared to risk that.

These risks should be better explained to women imo.

If you get undetected cervical cancer you won’t be having any children because you won’t have a womb any more or even perhaps a life. For the love of God, take the tests that you’re offered. There are times when you really don’t know best and this is one of them.

I had a smear that showed cin3. Lletz showed cin2, but they wanted to check with another lletz. That came back as cin1.

I'm not bitter at all, you know why, because sometimes you can't tell exactly what it is just by looking.

I joined a Facebook group when I was diagnosed and in a blind panic, half were advocating natural remedies (each to their own) and then you got the stories that said they had been told cin2 on smear got lletz and it's come back stage 1 cancer.

I have had two sets of bleeding for a month twice, stinking, not having baths (but showers are available...) missing swimming with my kids, And you know what I would do it again if it made sure I wasn't developing cancer, I'd rather miss 8 weeks of swimming than a life time

You should be able to arrange a private smear at most private hospitals with a gynae consultant.

I've tried the local private hospitals and they only do HPV testing.

The consultant was adamant I didn't need a repeat smear so I suppose I have to trust him but it's worrying when you hear of other people having CIN2 changes when they're HPV negative.

I’m sorry that you went through this OP and I’m even sorrier that a board of supposedly women / mums is so nasty and unsupportive. You have every right to be upset. I hope your health is better now and that the procedure hasn’t harmed you I any way x

YANBU to feel upset, OP's feelings are valid.

BMJ article about different types of inappropriate treatment. This risk is a reason why some of us try hard to avoid screening and medical attention.

Beyond being upset, there probably isn't any other outcome. It's not the same as medical negligence. It's a risk that is considered acceptable within mainstream medicine.

I sympathise OP. Lletz was the worst procedure I’ve ever had to go through. And I had a brutal childbirth.

I’m tough and fairly resilient but the procedure made me cry. I’ve got a hefty episiotomy scar, It was painful and I developed an infection which I put off getting treatment for as I couldn’t face another examination.

It left me wondering why women are expected to have treatment like this with “you should be able to go back to work” “a couple of paracetamol and you’ll be fine”.

I decided that if I ever needed another one I’d beg for a hysterectomy.

But, I don’t have cancer. I was recalled after my next 12 monthly smear but the clinic looked at my cervix and decided all was fine.
I tested negative for HPV too.

It’s ok to feel like you’ve been through a trauma, I certainly did, but I think medically they’ve done the best thing- at least the best thing they have at their disposal anyway

I disagree with almost poster. I totally understand her anger. This is very complex. She was misdiagnosed. And then given a treatment she didn't need, because of that mid/diagnosis.

I'm staggered that all The previous posts are so flippant and blasé. 'Be grateful you don't have cancer'. Err, that's not the point. At all.

Every sympathy op. I think you should make a complaint. Or at least talk to your GP and the consultant about this.

I've seen similar threads on Mn before. Bad misdiagnosis. Horrendous treatment and then discovery of an error.

I know I'm taking the Mick here but just bear with me. Imagine you were a young 21-year-old and told you had cancer and you went through chemo etc. and then they told you that you had cancer of the womb and they need to remove your whole womb. All the trauma and psychological damage of going through all that. and now you're a young 22-year-old woman who can't have children at all.

Sorry we had you mixed up with a different patient. Or sorry it turns out You only had a spot on the end of your nose.

Oh. So that's ok then.

Errr no!

@Partey

I sympathise OP. Lletz was the worst procedure I’ve ever had to go through. And I had a brutal childbirth.

I’m tough and fairly resilient but the procedure made me cry. I’ve got a hefty episiotomy scar, It was painful and I developed an infection which I put off getting treatment for as I couldn’t face another examination.

It left me wondering why women are expected to have treatment like this with “you should be able to go back to work” “a couple of paracetamol and you’ll be fine”.

I decided that if I ever needed another one I’d beg for a hysterectomy.

But, I don’t have cancer. I was recalled after my next 12 monthly smear but the clinic looked at my cervix and decided all was fine.
I tested negative for HPV too.

It’s ok to feel like you’ve been through a trauma, I certainly did, but I think medically they’ve done the best thing- at least the best thing they have at their disposal anyway

You’d beg for a hysterectomy. Omg. Clueless. I had just about the roughest hysterectomy possible. But even a vaginal one is horrendous. Do you not realise this requires hundreds of internal stitches? Clueless.

I’ve had an LLETZ, fucking painful injections in 4 areas of my vagina whilst fully awake twice, egg retrieval before the aforementioned injections had taken effect and almost passed out in pain, a uterus lining biopsy with no pain relief and also needed an episiotomy for childbirth. Oh and a twisted ovary, which obviously needed surgery.

Why the fuck do people say such drivel? It’s insulting to those, who’ve actually been through the trauma.

@Oblomov21

I've seen similar threads on Mn before. Bad misdiagnosis. Horrendous treatment and then discovery of an error.

I know I'm taking the Mick here but just bear with me. Imagine you were a young 21-year-old and told you had cancer and you went through chemo etc. and then they told you that you had cancer of the womb and they need to remove your whole womb. All the trauma and psychological damage of going through all that. and now you're a young 22-year-old woman who can't have children at all.

Sorry we had you mixed up with a different patient. Or sorry it turns out You only had a spot on the end of your nose.

Oh. So that's ok then.

Errr no!

Yeah except that's nothing like what happened here.

@Oblomov21

I disagree with almost poster. I totally understand her anger. This is very complex. She was misdiagnosed. And then given a treatment she didn't need, because of that mid/diagnosis.

I'm staggered that all The previous posts are so flippant and blasé. 'Be grateful you don't have cancer'. Err, that's not the point. At all.

Every sympathy op. I think you should make a complaint. Or at least talk to your GP and the consultant about this.

She wasn’t misdiagnosed at all. the line between cin1 and cin2 can be very fine from the biopsies in some circumstances . A decision had to be made one way or the other. Who wants to gamble with potential cancer?

What is going on in British pathology lately? Or is it just that we’re only hearing about the mistakes on MN? I still remember the thread from a bit ago where a woman had a full mastectomy and lymph node removal based on a cancerous biopsy and then when the mass was removed snd tested, it wasn’t cancerous at all and she was asking if if SWBU to consider suing. Obviously a much more extreme situation.

HOWEVER. What is similar is a mistake at the pathology stage. The best decisions possible were made based on the understanding that you had a CIN2. Then afterwards… like the other poster, you were distressed (understandably) to find out the initial pathology was wrong and you had an unnecessary procedure (though much less invasive than hers).

Should you be upset with the circumstances? Sure, it’s shite this happened and it’s unfair. Should you be upset with the doctor? No, they couldn’t have changed anything. Should you be upset with pathology? Difficult to say; why do these mistakes seem to keep happening? Are they cutting corners because the whole country is overwhelmed by testing for COVID, or is this just something that has always happened? I honestly don’t know.

But either way, you don’t meet the definition of medical negligence so you can be angry if you want, but no doctor is going to be punished for this nor would suing be successful, I don’t believe. I would focus on what you can change, if you want. If you want to demand a debrief, to understand how pathology could get it wrong, and to see if you can stop this happening to another woman, would that help? It’s your decision; maybe it wouldn’t for you. Maybe it would once you feel better.

Also, it sounds like you have a list of possible future side effects and take for granted they will all affect you (do you have some health anxiety? Or perhaps developed some after your procedure? Which I could understand) but you need someone to help you understand these. They’re not just the sword of Damocles hanging over your head. For example, the increased risk of miscarriage. Yes, it’s higher… for the first twelve months after LLETZ. After that, it’s 4,6%, and the risk of miscarriage in the general population is anywhere from 8-15%. So these are not things that are doomed to happen to you. It also sounds like you’re having a rough recovery (I am obviously not your doctor and have not examined you, but have you been examined after a month? There’s a possibility of infection, and “foul-smelling” says to me that you might have an issue; I’ve actually never heard of anyone having this a month after LLETZ) which is going to make anyone much angrier they went through anything unnecessary. It’s double-shite.

I do hope you feel better soon , and that maybe you have some time to have a think about what will help you feel better. You mention having children currently, so I don’t know if you were planning on having another in the next 12 months, but a lot of possible side effects decrease after 12 months. (This doesn’t invalidate how you feel, hopefully just helps some anxiety that you won’t be able to conceive again).

@Niconacotaco

Could some tissue have have CIN1 and some have CIN2? So neither was wrong? Is it difficult to tell the difference on a biopsy?

No, because the numbers refer to how many and deeply the abnormal cells extend. They are not different types of abnormalities. They are also not cancer. They often resolve naturally.

CIN2 doesn't necessarily need treatment nor does it necessarily become cancer.

One of the risks of cervical screening is over treatment like this. Some posters sound like they've mindlessly swallowed headlines about cervical screening without any comprehension of how it works or what it does.

Of course it is a big deal to go through a stressful and invasive but entirely unnecessary treatment. To say otherwise is gross and ignorant.

Op, I'm sorry this happened to you.

You ought to count your blessing that you live in a country that provides all these tests and services free at the point of use. Complaining that you had some tests because they didn’t find anything is truly beyond absurd.

You could always have declined the treatment - and if your answer to that is no, you needed to do it, well there you go. It honestly beggars belief that somebody would actually consider complaining because they thought their medical investigations were too thorough.

They treated you based on the information they had. That’s all they can do. Delay to treatment can ultimately lead to illness and then death. The result was CIN2 and they acted on this information.

Aside from the more recent results, you’ve had three years of concerning results and referrals. This isn’t typical so they’ll have underlying concern from this picture. Something clearly was not right and you’ve now received treatment.

OP you've just been through something really traumatic and you're still in recovery, I totally get that you're angry and upset at the general situation that you've had to go through all this. It might be that it was essential for these tests to happen and that they had to act on the test results, which was a good thing ultimately, but frustrating that the test results were different. I think ultimately they did what they had to do, as it could've been far worse for you and for them not to act.

But I totally get why you are angry and noone has the right to tell you you shouldn't be.