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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

MEDICAL procedure I didn’t need AIBU?

150 replies

Brighton5555 · 10/08/2021 22:17

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

OP posts:
Twizbe · 10/08/2021 22:20

I'm sorry you've had this worry.

But if I understand a test showed you did need treatment, but a later test showed a different result?

The treatment sounds rough, but would you rather they'd left it and you risk worse treatments for cancer?

I'm sorry if I'm not clear why you're so angry.

PotteringAlong · 10/08/2021 22:23

So better that they’d left it and you developed cancer?

No. I don’t think so.

There was a problem, they treated you. Further tests showed it wasn’t as serious as they first thought. Happy days, surely?

Losttheequipment · 10/08/2021 22:26

What are you angry about?

Original poster
Brighton5555 · 10/08/2021 22:27

It’s not quite as easy as that but I can see why there is a immediate jump to be thankful it’s not cancer

They DO NOT treat CIN1 for multiple reasons because it doesn’t require treatment.

The procedure I had now has to be at risk of premature births, miscarriage, problems with bleeding, increased anxiety, disrupted periods, infections, weak cervix, and there is a maximum amount of times they can actually carry it on a woman before there is no cervix left .

My anger is this - the final pathology matched the initial smear - CIN1

Treatment only happened because the colscopy biopsy apparently showed a more severe level of abnormal cells when in fact that’s impossible to have been the case .

OP posts:
Wannakisstheteacher · 10/08/2021 22:28

Some people are never happy. You had the procedure to prevent you developing cancer, based on the evidence they had. They didn’t do it for a laugh. Very strange that you are ANGRY . Maybe next time just tell them you’d rather take the risk?

HalloHello · 10/08/2021 22:30

Unfortunately this happens a lot with all different types of biopsy and most people I have met are extremely grateful that their condition isn't as bad as once feared. Yes the procedure was awful, but it's much better than it going the other way, they didn't do anything and it turns out in 12 months time you have severe disease requiring much more difficult and scary treatment. Then you would be flipping angry.

vodkaredbullgirl · 10/08/2021 22:32
Hmm
Niconacotaco · 10/08/2021 22:36

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

Whataboutye88 · 10/08/2021 22:38

Isn’t a possibility that the initial biopsy taken at colposcopy showed CIN 2, and the cells removed during the procedure were later tested and shown to be CIN 1? If your colposcopy result was CIN2 then it is absolutely correct that it should have been treated. Do you think the colposcopy result was incorrect?

Liminalstate · 10/08/2021 22:41

I think you feel what you feel. However, I'm with you in that I would be angry about this, particularly as you've listed the (potential) long term consequences of the unecessary LLETZ treatment.

Have they said why the results from the biopsy were incorrect?

HalloHello · 10/08/2021 22:43

It is also possible that there was some signs of CIN2 in the first one, but it was removed then and the biopsy only showed CIN1. No one has made a mistake here, they have treated you appropriately and I think you need to try and forget it now.

Jellybean100 · 10/08/2021 22:46

So they got your results wrong? And you’ve since seen the written results which say it’s CIN1 not 2? Then yes I’d be angry.

KittytheHare · 10/08/2021 22:47

@HalloHello

It is also possible that there was some signs of CIN2 in the first one, but it was removed then and the biopsy only showed CIN1. No one has made a mistake here, they have treated you appropriately and I think you need to try and forget it now.
I totally agree with this. Your treatment sounds grueling, but it was done in good faith with your best interests at heart. You need to put this behind you.
shangelawasrobbed · 10/08/2021 22:48

It must be incredibly frustrating that you had to go through the trauma of that procedure for nothing. I'm sorry you had to go through that.

I can understand that they have to err on the side of caution, though, and if they had a biopsy indicating CIN2 then they had to act.

My friend died from cervical cancer at the age of 32, they just can't risk letting something like that progress.

SparklingLime · 10/08/2021 22:49

No one has made a mistake here, they have treated you appropriately and I think you need to try and forget it now.

What qualifies you to make that statement, @HalloHello?

PairOfPears · 10/08/2021 22:50

OP I’m sorry this happened to you. It sounds frustrating and painful to go through.

Women are often expected to be grateful to a medical system that consistently lets them down and frankly, it’s bullshit.

Hohofortherobbers · 10/08/2021 22:55

Would you have been able to not treat it and not worry if they had said 'well it's probably 1, even though we have a sample that's states it's 2, let's wait and see'. I wouldn't be able to, I'd want the treatment for the worst case scenario but we're all different. I wish you well Flowers

lightand · 10/08/2021 22:55

Treatment only happened because the colscopy biopsy apparently showed a more severe level of abnormal cells when in fact that’s impossible to have been the case

The procedure I had now has to be at risk of premature births, miscarriage, problems with bleeding, increased anxiety, disrupted periods, infections, weak cervix, and there is a maximum amount of times they can actually carry it on a woman before there is no cervix left

I am sorry this happened to you.
I think you need more peace of mind, quite apart from anything else. I think you need to speak with medical people in rl, who can try and explain things.

Answers you get on MN will largely be from people who are not medically qualified.

CutePanda · 10/08/2021 23:04

@Jellybean100

So they got your results wrong? And you’ve since seen the written results which say it’s CIN1 not 2? Then yes I’d be angry.
I’m not sure why so many people have said OP is BU. It’s horrific that OP was misdiagnosed and made to go through horrific unnecessary treatment because they didn’t do further investigations before the treatment. Women are often dismissed by doctors.
eurochick · 10/08/2021 23:05

I'm sorry OP. There is a lot of over-treatment for cervical abnormalities. I understand your frustration.

I had CIN1/2 once and did a lot of reading around. There is a study from the 70s that would be considered unethical now as it left some abnormalities untreated. In the study, even for the women with CIN 3 only 1/3 of them went on to develop cancer, without any treatment at all. The % for CIN 1 or 2 was much lower. On that basis I opted for monitoring and my smears since have been normal or borderline. They might turn again and if they do I would opt for treatment for CIN3 as a 1/3 risk is higher than I am comfortable with. There should be more of a conversation and weighing of risk with each patient rather than a blanket policy of treating CIN2 but not CIN1 IMO.

MauveMavis · 10/08/2021 23:09

I'm really confused.

How many biopsies/ test have you had?

Smear -> CIN1

Which lead to colposcopy -> CIN2

LLETZ -> further biopsy which showed CIN1

or have they contacted you to say that the a sample has been reviewed and the pathology report amended from CIN2 to CIN1?

If it was the first sequence of events and the pathology lab are stand-in by their CIN2 analysis I don't see what else the treating team (or you for that matter could have done). You can't ignore a biopsy result like that.

RicherThanYow · 10/08/2021 23:10

I’ve been where you are. Kind of.

I didn’t realise that there can actually be a huge discrepancy between the observation findings on colposcopy and the histological grading of the cell sample on biopsy. It’s not as clear cut and as simple as you make it sound - I’m sure any decent team (tricky cases are discussed in an MDT, it’s not just one person making this decision) that if there’s any doubt, it’s better to treat than not treat to minimise the risk of future cancerous changes.

(Background - I had LLETZ for very nasty looking, but relatively harmless, CIN1. The consultant said it “looked” like CIN3. I was happy to have the treatment and would do so again if needed but yes it was a very confusing time. LLETZ wasn’t nice but absolutely preferable to cancer treatment and the recovery was fine).

MintyGreenDream · 10/08/2021 23:21

Have you finished having children/don't want them because I had this procedure 2 weeks ago and she said it could lead to pre term labour if I became pregnant at any point in the future.They have to inform you of this.

Jellybean100 · 10/08/2021 23:23

@MauveMavis

I'm really confused.

How many biopsies/ test have you had?

Smear -> CIN1

Which lead to colposcopy -> CIN2

LLETZ -> further biopsy which showed CIN1

or have they contacted you to say that the a sample has been reviewed and the pathology report amended from CIN2 to CIN1?

If it was the first sequence of events and the pathology lab are stand-in by their CIN2 analysis I don't see what else the treating team (or you for that matter could have done). You can't ignore a biopsy result like that.

The LLETZ is a treatment, not a biopsy so there wouldn’t have been any “results” from the lletz.

I read it that smear- CIN1
Biopsy - was told CIN2 so had LLETZ but then results letter came through saying it was actually CIN1.

Is that correct OP?

Apandemicyousay · 10/08/2021 23:25

@HalloHello

It is also possible that there was some signs of CIN2 in the first one, but it was removed then and the biopsy only showed CIN1. No one has made a mistake here, they have treated you appropriately and I think you need to try and forget it now.
👆