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

Actually I had cin3 and they cut an inch off my cervix rather than burnt cells off.

It may be the area had some CIN 2 also. I understand it has been unpleasant but honestly LLETZ doesn't have high risks for the things you have mentioned, they are very small risks, the vast majority of women will have no after effects from it. I think you've been through something unpleasant and you are lashing out but the recovery is pretty quick and you will feel better soon.

First of all you are within your rights to refuse treatment or demand a second opinion or biopsy, none of which you speared to do.

Secondly there may have been CIN2 in areas, which without treatment would undoubtedly have spread.

Thirdly there's been no incremental harm caused to you by having the treatment, it was done in good faith following investigation results.

Finally no mistakes were made. No errors or omissions. The medical professionals acted in good faith with the evidence they had.

I hope you can take comfort from the fact you no longer have these cells and move on. Speak to them at your next appointment as there will be support mechanisms in place.

They’ve been incredibly thorough
During a pandemic when resources have been squeezed

Angry?
I’d be grateful and relieved

Let me guess

Your angling to “sue” the nhs

Don’t be daft OP. You stand no chance.
M

Just move one.
It’s really not that big a deal the treatment you received.
They were very thorough

YANBU to be angry plus it’s horrible to go through a procedure that turned out to be unnecessary. However, what it if had been the other way round? You may have felt differently then. Fingers crossed for you that this is the end of it now, only smears from now on.

You are being ridiculous. Be thankful you've had thorough treatment in a chronically underfunded service in a pandemic when thousands of people needing treatment have been delayed.

I was wondering something similar, OP, after the recent changes to smear tests. Over the years I've had several "borderline changes" leading to more frequent smears for a time, then had CIN2 in 2009 and loop excision. At no time have I tested positive for HPV.

Under the new system, where you go through all the discomfort of a smear but they only test the sample for HPV, then if negative don't screen the cells, the CIN2 wouldn't have been picked up.

So are they saying that my treatment in the past was unnecessary because it wouldn't have turned into cancer without having HPV? Or are they just throwing women under the bus to cut costs?

Histology is not as cut and dried as micro biology, its subjective to how the cells in your sample look. Lots of things can affect that, from if the hpv infection in the area the biopsy was taken was active, how preserved the sample was, and how the cells on the slide looked, was the haematoxylin particularly dark makin the nuclei look 'angry' was it a thick section. Was the pathologist less experienced as screening gynae samples so erred on the side of caution. ALSO it could bethe pathologist only sees a small section of n of the LLETZ sample, each is cut into sections approximately 3mm thick, and processed into a block. From this block we cut a 3micron section that is stained to be looked at, so it is possible there is CIN2, but that bit was observed under a microscope. Histology is only a representatation of your sample. We do no view every single cell of it.

They don't do treatments for fun you know there's a rationale and sounds like a great result to me.

From what I understand a smear doesnt show CIN1 or CIN2 etc, this can only be diagnosed via a biopsy. A smear would show abnormal cells

CIN1 or 2 is due to the number and depth of dysplastic cells in the sample. Dysplasia is ultimately a spectrum, and can often be mild to moderate or moderate to severe but it sound like the biopsy taken had enough abnormal cells to quantify CIN 2. When the LLETz was done the overall depth of dysplastic cells indicates it was more CIN1. It maybe you had a small area of more severe dysplasia that was removed during the biopsy/col

However CIN1 still has a risk of progression towards cancer, the reason it's not treated is because a lot of the time it resolves on it's own, yours has obviously persisted since 2018 plus a biopsy showed an area of more severe dysplasia indicating it was progressing

I dont think that the NHS have made a mistake. And ultimately I would be relieved that the LLetz showed lower grade dysplasia than initially thought

I had exactly this in the last 6 months, smear, abnormalities detected, colposcopy, punch biopsy, CIN2, LLETZ, nasty recovery, letter to say CIN1 but I was in no way angry after reading that letter, I was bloody relieved. I’m so grateful that we live in a place where we are routinely checked and treated without receiving a huge bill after or having to sort out insurance to cover it.

Honestly I think you need to get over it and look at it another way.

Not a pathologist but again relevant field I receive/interpret pathologist reports all the time. From your posts I can’t see where you think a misdiagnosis took place. Grading cell changes is never an exact science ( nothing in medicine is an exact science IME!) do you think the pathologist who read your biopsy should have ignored the features she found that indicated CIN2 changes? Clearly, on the small sample of cells she had, she found evidence of CIN2 so reported that. It would have been negligent of her to do otherwise. Your clinicians then made a treatment recommendation based on that following current pathways - again would have been negligent for them to do otherwise. When the larger sample of tissue was examined after the LLETZ, thankfully, a final conclusion of CIN1 could be made. That’s brilliant news and not something to be angry about.

Your feelings are what they are, and clearly you have very severe anxiety surrounding it, and no it’s not a fun experience (been there as well) but anger at the professionals involved is misplaced. From the information in your posts, no-one made any mistakes or misdiagnosed you or did “treatment you didn’t need” - according to the results available and current evidence based treatment pathways, the procedure you had was indicated and the appropriate course of action. The outcome is the best possible outcome from the situation.

You can’t change what has already happened, you can only change your feelings by taking the time to process them and fully understand what has happened. Hopefully with time and perhaps talking it through a counsellor you can do that

@Brighton5555

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 .

So they check the margins are clear, this means there are no abnormal cells around the edges that would need to be removed further. All of a LLETZ is sampled, we take between 3-9 blocks 3mm thick normally. Any thinner sectioning them leads to them falling out of the wax and the tissue lost, thicker and its not a good representation of the sample. We cant section the whole way through the tissue and view every section of 3micron thick tissue, it would be nearly 20000 slides to look at. To give you a comparison for a malignant bowel resection we often take only 20blocks, not all tissue is sampled.

Your gynaecologist can only see changes that are viable on the surface, yes they are used to looking for abnormalities that indicate CIN1/2/3 but the only actual answer is histology. A histologist will often have another pathologist review any slides they are uncertain of.

Yes pathologists can get it wrong as my previous post, but more likely is it just wasn't observed in the LLETZ for reasons mentioned

This is my profession and this situation happens all the time. Sometimes the focus of CIN2 is small so the biopsy plus inflammation and repair gets rid of the cin 2. There is no way to know this until you get the LLETZ.

Sounds like you had a horrible experience but I think you are focussing your anger on the grade of CIN. Sounds like your treatment was correct abd successful. Take a breath. .

Op I am midst this atm. Just been scheduled for my lletz. Bluntly if that comes back clear/ ok, I will be cartwheeling with joy.
As many others have said, in an over stretched, underfunded system that has been hammered, I am beyond grateful that they’ve made the decision to err on the side of caution and give me a lletz to really figure out what is going on.

Like you I have had smears, colposcopies, scans, endometrial biopsy, swab for infections. The decision to send me for a lletz was made by a team, not an individual. Ultimately I am grateful that the necessary preventative steps are being taken. Vs being ignored and one day I instead am diagnosed with cervical cancer.

None of this is an exact science and tbh it sounds like you had superb treatment (from a medical perspective). Your anxiety and trauma however sounds pretty tough to deal with and I’d look into counselling for that.

I showed this to a friend who is in this area of work. This is her response to me asking if the LLETZ was the correct route to take.

“if a biopsy showed cin2 then she would need a LLETZ. A biopsy is only a very small area of tissue which could of been an area of CIN2, where a LLETZ is a much bigger piece of tissue and overall the diagnosis could be CIN1.

They don’t just cut tissue out of people for no reason, she clearly needed the LLETZ and should be thankful it’s come back as CIN1. It can progress quite rapidly into CIN2, CIN3 and then invasive carcinoma so she’s lucky it’s not done that yet.

You are also within your rights to ask for a second opinion and to refuse a medical procedure 🤷🏼‍♀️

Am I the only person who has also had LLETZ for CIN2, feeling a bit like they’re not sure what the fuss is about here?

Not sure if i was uninformed or lucky, but I didn’t expect nor have a long recovery, and from memory, was back to normal the next day, albeit with minor bleeding/discharge for about a week?

I’m sorry you’ve found this traumatic OP, but I think you should maybe focus on why you’re so angry/upset, rather than on the treatment - which sounds totally unobjectionable to me, personally.

They did what they thought was right, you only know it was definitely level 1 as they did the biopsy. Doctors don’t have a crystal ball and sometimes they do a procedure which they later discover wasn’t necessary. But the only way to know it wasn’t necessary was to the procedure. I can understand you’re upset by it, but you do need to be thankful that it wasn’t the other way and you were left to develop cancer. Which happens to many others, happened to my old school friend who died at 27 leaving a 2yr old.

My consultant didn't say they don't treat CIN1, just that the 'treatment' is regular monitoring to see if changes take place and it develops into CIN2. I do understand your frustration OP, I've recently had a colposcopy and a biopsy due to recurrent HPV and the biopsy caused a massive bleed they had to cauterise. I've been terrified for weeks that it was a sign of something more sinister and the stress and anxiety of waiting for results is awful, only to be told everything is fine and they'll see me in three years.

I'd almost rather they had removed the patch of inflammation regardless to try and clear the HPV and bring me back in every six months or a year for testing, because I am terrified of cancer developing.

I would recommend Jo's Trust - there are a lot of people who will have gone through something very similar and it is the most supportive forum to discuss these sorts of concerns and feelings

@VaguelyInteresting I’ve had lletz also, mine were cin3 and had two areas removed. My recovery was fine, the most nerve racking thing was waiting for the letter to come through to confirm CIN3 and not cancerous.

For me it has had an impact on pregnancy, I had my DD 3 years after the procedure and my cervix was very weak. I had refused TVScans and needed progesterone from 22 weeks as my cervix was shortening.
I was high risk miscarriage / preterm labour. She did come early but only by a couple of weeks.
However I was ever so thankful that my precancerous cells had been treated and found before they turned cancerous.

Not refused TVS … should read I had regular TVScans

@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

Just on this, my consultant told me that they are only right about 60% of the time from just looking at the colposcopy and that's why they take the biopsies, they aren't usually Wiley wrong but when it comes to grading cin1/cin2 they absolutely rely on biopsies instead of just their observations.

I had a biopsy taken that showed Cin 2.
Lletz treatment 6 months ago resulted in me receiving a letter that stated no abnormal cells had been detected (Hr HPV was detected).
I was utterly joyous and I presume the area of Cin 2 was removed via the initial biopsy.
Currently waiting for my 'test of cure' smear and hoping the HPV has gone and hasn't caused any further sprouts of Cin.

OP. Honestly. I'm lost for words.

@DeflatedGinDrinker

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.

My sister had LLETZ and was very unwell for about a month, she ended up with PID and narrowly avoided hospitalisation for IV antibiotics. Not everyone's recovery is the same.