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

Can any pathologists on here comment? If the changes are patchy or can occur unevenly, surely it is possible that the biopsy result was different?

It’s not correct there are no results from a LLETZ treatment.

They remove approximately 1cm of cervix. They send that to pathology for detailed screening and checking of ‘ margins’ around the sample to make sure they have got it all and that it doesn’t reveal cancer.

I would love a pathologist to comment on here to help me understand better .

Once again

I had a smear that showed CIN1
To be safe I was referred to
Colscopy and had three punch biopsy taken

Consultant wasn’t worried she said she could hardly see anything on the screen ( they can see damaged areas where the abnormalities are ) and said let’s wait for the biopsy

That came back worse than the smear indicated so I was then informed it had gone up a level to 2 and I had to have treatment

Treatment completed and the pathology has wrote to confirm the removed it all but it was actually level CIN1

That’s the mildest level of an abnormality which is AMAZING but it’s a level THEY DO NOT TREAT because all the medical research shows it DOESNT REQUIRE it

Following the procedure for which I was extremely anxious and on dimazepan I have had a month of leaking a foul smelling watery discharge ( normal in recovery ) delayed period, not been able to have sex, take a bath, go swimming with my kids , and I’ve already mentioned the above List of things I’m now at risk of .

I think you need to te think this. Your biopsy showed CIN2... the procedure was needed and resulted from that. You should be happy that no further CIN 2 was found following this. I don’t know who you could be angry with? It seems a strange emotion. You should be relieved.

I understand the anger. I had a similar situation happen with a completely different issue where something was taken when it didn't need to be. But it is gone and forever it is gone. I have had to get over it. Health professionals are not infallible, they do the best at the time of their interpretation and maybe but maybe the risks you list might never happen.

I'm sorry this has happened to you OP. As PP have suggested I wonder if it could be that different areas of your cervix had different levels of HPV?

Something similar happened to me, I have had 12 monthly smears for the last 3 years, the result has always been HPV present but no abnormal cells found. After the 3rd HPV positive smear I was sent to colposcopy where they found CIN3 in several areas. They believe each smear swab had missed it.
I've been treated once with LLETZ but they didn't get clear margins so I have to have it again.

I understand your frustration, I've found the whole process has made me anxious but I'm grateful for the treatment.

I’m sorry you went through that, but I agree with others, it’s better to be safe than sorry.

Perhaps they over egged it and aired on the side of caution but surely that’s a better outcome than them saying…’ let’s just see…’ and then it turning in to cancer cells.

You need to speak to another gynae doctor to get clarity about this situation. This is not the place for another medical opinion which you need

I think you need more than to just "get over it". You have every right to feel angry considering what you went through based on all the confusing information you got from the professionals and then being left thinking that, along with the possible side effects in the future may have been completely unnecessary!

Fu*k those who say be grateful it wasn't cancer. It wasn't! And you would expect them to have proper results before treating you for anything!

YOU cannot change what has happened though and you need to be able to move on. My advice is to contact the hospital or clinic and ask to speak to someone to help clarify what was done and why. Email or letter is best to have it in writing. Otherwise, perhaps, contact a specialist solicitor so you have someone on your side that will be able to ask the right questions.

YANBU!!

*You (not YOU, sorry)

Don’t they look at the cells under the microscope and grade the changes based on what they can see? So as more tissue is taken to test with the LLETZ compared to the punch biopsy, more cells can be examined and a more unequivocal result obtained? If the punch biopsy showed CIN2 then the LLETZ was of course the correct treatment (particularly if there was high risk HPV as well).

I think you need to phone the department and have someone call you to discuss it and hopefully put your mind at rest.

You definitely get the 'results' following LLETZ, I'm looking at mine now. It confirms CIN3 & CGIN and in my case outlines the next treatment steps.

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.

My apologies re results of lletz. So in that case biopsy showed cin2 LLETZ showed cin1?
How does that happen? I understand your anger but the medical team can only work with the information they are given

You anger is totally understand LSE, OP. Medical procedures are often painful and traumatising and to undergo one you don’t need is clearly not a good thing.

Whether your anger is reasonable or not depends, I think, on whether the misdiagnoses was due to factors reasonably within the control of the treating facility. It’s not absolutely clear to me whether this was the case, though it certainly seems like a possibility. Is PALs available for you to talk to?

*understandable, not understand LSE

@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 think most people agree with this, judging by the poll!!

@RicherThanYow

Don’t they look at the cells under the microscope and grade the changes based on what they can see? So as more tissue is taken to test with the LLETZ compared to the punch biopsy, more cells can be examined and a more unequivocal result obtained? If the punch biopsy showed CIN2 then the LLETZ was of course the correct treatment (particularly if there was high risk HPV as well).

I think you need to phone the department and have someone call you to discuss it and hopefully put your mind at rest.

This makes sense

@RicherThanYow

Don’t they look at the cells under the microscope and grade the changes based on what they can see? So as more tissue is taken to test with the LLETZ compared to the punch biopsy, more cells can be examined and a more unequivocal result obtained? If the punch biopsy showed CIN2 then the LLETZ was of course the correct treatment (particularly if there was high risk HPV as well).

I think you need to phone the department and have someone call you to discuss it and hopefully put your mind at rest.

This is right. I'm sorry that you've had to go through a colposcopy and LLETZ, not a nice or pleasant experience for anyone. They look down a microscope at the cells and grade how dysplastic the cells look, they follow certain guidelines and will grade the sample. There is a degree of variation depending on the pathologist looking at the sample, as with any person, but generally it's very clear whether something is for example CIN I Vs invasive cancer. The tricky bit may be a sample which is bordering between CIN I/CIN II or CIN II/CIN III

It's not an exact science unfortunately but it's as good as we have for picking up early precancerous changes.

YANBU
Your feelings are absolutely valid and it annoys me when the gynaecologist comments on how the cells look because, from my experience, I was told you really can't judge it accurately from sight. I'm not a medical professional but I can offer my experience.
I had my first smear at 24 and had been having cervical cancer symptoms (painful sex, random bleeding, bleeding after sex etc). Letter came back that I had moderate something or other, I can't remember the wording, and was sent for a colposcopy.
I was told there were a lot of abnormal cells and she took a biopsy and gave the LLETZ treatment there and then too. This involved being given an anaesthetic, the biopsy being taken and the cells being lasered off, but no part of my cervix was removed. I only had pain up to 48 hours afterwards and funky discharge for around 2 weeks but stuck to the 4 week rules you mentioned. Results came back as CIN2 with no HPV (which worries me that smears in my area now only check for HPV and not abnormal cells anymore).
I got pregnant a year later and carried to full term with no complications related to my cervix

@Natashaj27

YANBU Your feelings are absolutely valid and it annoys me when the gynaecologist comments on how the cells look because, from my experience, I was told you really can't judge it accurately from sight. I'm not a medical professional but I can offer my experience. I had my first smear at 24 and had been having cervical cancer symptoms (painful sex, random bleeding, bleeding after sex etc). Letter came back that I had moderate something or other, I can't remember the wording, and was sent for a colposcopy. I was told there were a lot of abnormal cells and she took a biopsy and gave the LLETZ treatment there and then too. This involved being given an anaesthetic, the biopsy being taken and the cells being lasered off, but no part of my cervix was removed. I only had pain up to 48 hours afterwards and funky discharge for around 2 weeks but stuck to the 4 week rules you mentioned. Results came back as CIN2 with no HPV (which worries me that smears in my area now only check for HPV and not abnormal cells anymore). I got pregnant a year later and carried to full term with no complications related to my cervix

90% of cervical cancers are caused by HPV so the decision to screen for HPV rather than examine smears has been made as it's more cost effective. Unfortunately it does mean that 10% of cancers may be missed (not always as if there's any visual changes they will examine the cells not just look for HPV). With all screening there is a balance between cost/benefit and maximising that, for example breast screening only starts at 50 and unfortunately that means we miss younger women with cancer 🙁

I am not a pathologist but I do work in a relevant setting - and what you’ve described is not medical negligence or mistreatment of you. However that being said, your procedure and after effects is no small thing, and coming to terms with it is hard.

Especially because you now don’t have the reasoning ‘well I went through something horrible, but it was absolutely necessary for my life’.

Healthcare and treatment are both a science and an art. They are not exact, and not sadly without risks. For all the amazing progress in medicine it can be still rough around the edges. Diagnosing is getting more and more precise, but it’s not there yet.

What you’ve been through is rubbish. However those diagnosing you proposed appropriate treatment at the appropriate stage, and they also monitored you and checked you regularly. There are NICE guidelines (and other medical guidelines) which are national ‘pathways’ to treatment which outline clearly what should happen at each stage, with decision trees. This informs practice and with smear testing this has been a big national campaign for years so the guidelines I imagine are more robust than other areas.

Still, your anger is totally understandable. However it’s not the medics fault (unless you think they misdiagnosed, but there is nothing to indicate that if your biopsy met the criteria for CIN2 then it met it - taking a sample is much more accurate but they cannot do that)

YABU
And it sounds as though it’s anxiety based. So now you’ve vented, I’d look to putting it behind you. Having has 3 major surgeries due to GPs brushing my issues aside until I was so ill I didn’t want to survive the first surgery, plus disability and chronic illness, I can absolutely tell you there is no point dwelling on something you cannot change. You would do well to face it to move on.

Are they now saying there was never CIN2 at all? Or that it was recorded at one point. If it's the latter then I'd rather be safe than sorry.
I've had LLETZ too and although I agree it's not pleasant it sounds like your anxiety about the situation is amplifying it all.

I had that and had the afternoon off work due to discomfort but was back the next day. What long recovery are you on about?! It was uncomfortable but it wasn't that bad.

I had a LLETZ and I was numbed but I am still feel traumatised with it over a decade later. I found my emergency c section less traumatic.
I can see why you feel angry but some of your cells must have been cin2 - so even if your LLETZ showed cin1 I would take it these were likely to have developed into cin2 at some point and it’s better they are off.