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

I joined a Facebook group ...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.

Stories being the operative word there.

@ Brighton5555 instead of coming on here to complain why not contact PALs and ask for clarification from the hospital as to how you were told one result and end up with another and take it from there. I don't understand peoples need to ask mumsnetters to comment on something without giving the hospital the chance to address it's actions and gain the bigger picture. It's easier to come on here upset rather than addressing it directly with them. I just don't understand what can be gained right now.

I’m sorry you’ve had to go through such a horrible procedure. I can understand why someone would be angry if the treatment was unnecessary because of a misdiagnoses.

You will want to understand more fully how this situation arose, why it was one thing, then it was something else, then it was back to the original again.

Most people including me won’t know enough about such things to understand how this happened and if it’s a common situation.

Can you write to PALS about this and get an explanation? It could be as others have suggested that they were trying to err on the side of caution or that one type of diagnostics is different to another leading to slightly differing results.

I’m glad you don’t have cancer though. That must surely be a relief. Imagine how angry you’d be if it were the other way around - you had cancer, they didn’t tell you, nothing was done and it progressed to the stage of life threatening. So it could be worse. Temper your anger with that while you get the facts, and then be angry if it turns out they messed up.

I honestly cannot believe some of the awful comments on this thread! Woman should be able to question whether their treatment is appropriate without being told they should be grateful for it!

Have you spoken to PALS or the gynae and asked for clarifications of the results?

Also (I know my comments are much too long), I do want to say I think how difficult a LLETZ is on you must have something to do with the size, length, shape of your cervix, as well as the location of the cells, because obviously people have VASTLY different experiences, a bit like how people report so much difference about having a coil placed, another experience that involves manipulating the cervix. So maybe it was an afternoon off for one person, and the worst experience since childbirth for someone else - they’re both “right,” and so are you, OP.

Whom ever said about private smears, check very carefully where you go, they need a screen a certain number a year to be con competent. With changes to screening programme many, unless in one of the centres, view enough

I’ve got a scar on my leg where I have had a skin leision removed. GP and dermatology nurse were convinced it was cancer. It wasn’t. I’m just glad it was dealt with.

I’ve had lletz and the anaesthetic ran out. They didn’t inject me again (blamed my red hair). It isn’t a pleasant experience but, again, the abnormal cells have been dealt with and you may not have a problem with them for a long time.

Perhaps you could contact PALs and ask for a debriefing from the nurse/consultant, just to explain what happened.

I don't think people really understand how the Cervical Screening System isn't 100% effective.

One of the problems that gets over looked is how you get a certain percentage of people who end up with unnecessary treatment because of the nature of the testing.

The reality is sadly that in order to save one life, several other women will end up having unnecessary treatment. Its a harm that isn't well explained.

In most cases, women in this situation would be more likely to be aware that they were the unlucky one who didn't need the treatment so remain grateful for it, under the false impression that their life was saved.

In the OPs cases she has been both unlucky to have unnecessary treatment and to then become aware of this.

There isn't an easy solution to this: the risk of unnecessary treatment is always going to be there if you participate in the screening programme. The alternative is to opt out of the screening programme, which for many women is something that they wouldn't even begin to consider.

So whilst I do have the upmost sympathy for the OP, I also think its 'just one of those things' that happen. The doctors acted on the information they had and erred on the side of caution, that it could be cancer and if that was the case the outcome would be more serious than the associated risks of the procedure. Thats not negligence. If it had been the other way around and they had decided not to go ahead and it had been cancer then that would have been negligence as they've not advised on the basis of the possible risks from the information they had at the time. Defensive medicine is problematic from the point of view that when it turns out there has been overcaution, a patient can feel let down but its to protect against a potentially worse situation.

The OP has every right to feel traumatised and angry by the nature of the procedure. However the real issue here isn't that she had unnecessary treatment, its that its clear the risk of unnecessary treatment hasn't been well explained to her and thats wrong in itself.

I hope you are OK OP. I would still raise the subject if this is the case, because informed consent relies on you being fully aware that this was a possible outcome and if you don't think that this was explained to you, you have right of reply to improve things for other women.

I hope you get the support you need having had it too.

It sounds like a borderline result, to be honest, open to the analysis of the person reading the cells. It almost certainly would have developed on by the time you were checked again in future.

So there has been some miscommunication here. You cannot diagnose CIN on a smear - CIN is a histological diagnosis made only on a biopsy. Smears show dyskaryosis of varying degrees of severity, there is a rough correlation between degree of dyskaryosis and degree of CIN but it's by no means 100%. You might find this leaflet useful. I think the issue here is not poor treatment but possibly poor communication and I'd suggest you ask for a review to explain it to you. Good luck with everything.
www.unidocs.co.uk/docs/cx/abnormal/english.pdf

@gmailconfusion2

Whom ever said about private smears, check very carefully where you go, they need a screen a certain number a year to be con competent. With changes to screening programme many, unless in one of the centres, view enough

It was me who replied to a query over a private smear.

Most consultant gynaes or private GPs do them in private hospitals.

You are talking about labs I assume who look at them, not the person taking them.

@Emmelina

It sounds like a borderline result, to be honest, open to the analysis of the person reading the cells. It almost certainly would have developed on by the time you were checked again in future.

I agree with pp. there could have been a small focus in your biopsy that indicated more than C1N1 to warrant going further.

I understand what it is like not to be able to go back to “normal” and normal life. But these are why we attend screening programmes - to deal with things early and nip things in the bud. There is a degree of over diagnosis and over treatment which is part and parcel of screening programmes, unfortunately.

I understand and hear that you are angry. And that is ok. I think taking it further with a patient forum or PALS is probably appropriate for you. But I think you’re placing your anger in the wrong place and it should be towards the possible malignancy rather than the treatment that you have went through. Sorry if that’s not what you want to hear.

Also…

1. I doubt a pathologist will comment; sorry. As far as I know, practicing doctors don’t comment (as such) on MN (or any other forum) because of legality. They’re lurkers.

1. As I mentioned, most of the side effects have to do with conception, pregnancy, and fertility. Yes, it’s strange they didn’t take a more conservative approach and advise you to consider a conservative decision (even CIN2 can take years to become CIN3 which STILL may not become cancer) if you told them you still intend to have more children.

I had CIN3 15 years ago and had to have a cold knife cone biopsy which is a bigger area of cervix cut away.

They told me as you have said greater risk of premature birth that might require a stitch in early pregnancy.

I later had a normal pregnancy and due to the history they called me back for more frequent scans to check the compentency of cervix. I was looked after and never required a stitch and pregnancy went to 39 weeks

It sounds like they did what was felt right at the time and maybe if you asked more questions now it might give you answers to pacify your mind.

I just wanted to comment on this thread for those who are now terrified of LLETZ. That I had this procedure done around 17 years ago. Zero pain. No after effects and went on to have two uneventful pregnancies, no problems with my cervix whatsoever.

When I spoke to my consultant about having had the LLETZ she said they’d only be concerned about the impact on the cervix if you’d had two or three LLETZ procedures performed.

I agree with the above (@FreeBritnee). I went on to have two babies after my LLETZ - both induced at term plus ten days. My cervix length measured short with the first but they kept an eye on it and all was fine. During my first labour there was an issue with the cervix dilating properly due to scar tissue, so it took a while, but the second was a breeze.

It’s all very personal I know, I can only speak for my own experience. I had an infection after my LLETZ but it was very easily treated with antibiotics. The procedure itself was unpleasant but the professionals involved were fantastic. I’ll never forget the gut wrenching fear I had when they mentioned it looked like CIN3 on colposcopy. I was so distressed I went for a private opinion and the wonderful, amazing consultant I saw didn’t charge me. I’ll always remember that kindness.

I really hope women aren’t put off having LLETZ as a result of this thread. Cervical cancer is a killer.

@Mummyoflittledragon
Are we trying to Out Trauma each other here?

It’s rude to suggest I’m clueless and it’s belittling to suggest that the trauma I felt(no doubt related to a fucking hideous Labour and probable undiagnosed PTSD) is on a scale compatible to yours.

I’m very sorry that your hysterectomy recovery was so bad- my whole point in posting was to acknowledge the OP’s own feeling of trauma and point out that even if is saved her fucking life it’s actually perfectly reasonable to feel that way after the lletz treatment.

Your response has reiterated the one upmanship- I’m clueless because you’ve been through worse?? No- I was in pain, a lot of fucking pain and memories of having a baby ripped from my uterus who wasn’t breathing and having multiple post birth issues has perhaps justified my feeling that the procedure for some, is hideous in the same way hysterectomy recovery is sometimes textbook too.

Take your judgement elsewhere

@Blossomtoes

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

It’s not just women and it’s not bullshit. I’d rather have a procedure I didn’t need than not have one I did need. You’d be even angrier if something was missed and you ended up having a hysterectomy, OP.

I almost lost both my fallopian tubes. I only had one when I conceived and it was ectopic. I stood my ground and, armed with as much info as possible, went home and, very fortunately, it passed naturally. I'm now 33+4.

I can't remember what it was for but.... Even my midwife said, doctors will tell you that you have a 50% higher chance of happening but they DON'T tell you that that's a 50% increase on 0.6%!!!! So you are still only around 1% at risk of happening!!!

This is not about men vs women. It happens across the board. It's about trust and research.

@makemeaCake yes I'm referring to if you get a private consultant reporting your slide. I have been aware of two consultants reporting private slides, but only seeing ten/20 gyne slides a year. I would rather an nhs cytoscreener who screens hundreds a year to that. The % of people who develope cervical cancer without hpv though is very very low, assuming that when tested its an active infection I guess

@Sacredspace

I honestly cannot believe some of the awful comments on this thread! Woman should be able to question whether their treatment is appropriate without being told they should be grateful for it!

Agreed.

There were similar responses when another woman posted about having had an unnecessary mastectomy due to an incorrect diagnosis.

@Partey
You just used a oneupmanship tactic on me whilst berating me as you believe I did the same. My post was not intended to do so at all.

LLETZ is a small procedure. I found it far easier than the other procedures I’ve undergone and I’ve had several. That is the point I was making in my post. And I’m not a women, who found and I found smears easy.

I’m sorry you’ve been through an ordeal when you gave birth, however, comparing major abdominal surgery to a LLETZ is absurd and was really upsetting to read not just for me personally but for others now frightened into thinking this is something major when it is not.

I am rather cross at the number of drama whipping up comments and fear people reading about this procedure. Women should not be under the illusion it is something so awful that rather than face this procedure, they should refuse treatment and potentially die. It is not.

Is this really the message that you and others wish to give? Words have power.

I do not doubt that op is upset and may need outside assistance. However, whipping her into a frenzy is not helpful.

@Mummyoflittledragon you called me clueless- twice. I could’ve put all of my experiences in my first post, I could’ve told everyone else they were clueless because they’d not had it as bad as me.

I didn’t- because A) I have no knowledge oF what others have been through and B) they’re feelings are valid REGARDLESS

I resonated with the OP whilst stating I was thankful for the outcome.

My mum suffered multiple gynae issues for almost 20 years until she was “allowed” a hysterectomy which frankly saved her sanity.

At no point have I whipped anyone into a frenzy, I’ve empathized and shared my feelings. I don’t need you, or anyone else casting doubt on my own actual experiences and feelings

And as you

[quote gmailconfusion2]@makemeaCake yes I'm referring to if you get a private consultant reporting your slide. I have been aware of two consultants reporting private slides, but only seeing ten/20 gyne slides a year. I would rather an nhs cytoscreener who screens hundreds a year to that. The % of people who develope cervical cancer without hpv though is very very low, assuming that when tested its an active infection I guess[/quote]
I have no idea where you live or what you are aware of. BUT I have never ever heard of consultants reading slides. Where does this happen?
My private smears have been taken by a consultant in a private hospital and sent to a lab for analysis. There is no way in a million years they would be doing it themselves. I've never heard of such a thing. Where have you read this?

Are people not allowed to find medical examinations/invasive treatments traumatic now because they’ve not got cancer/not had major surgery/not died?

Don’t be ridiculous!

OP, please don’t think your feelings are invalid.