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

Cancer scientist here: mumsnet is not the place for this. Nor is google. But cin1/2 are grades, it's not a binary thing. So some people might look at a slide and think that's pretty bad, and maybe another one would say actually that's bad but ok. There is no binary distinction here. Also, cin1 is not normally treated as it often reverts back to normal but if it hasn't after a few years, then treatment is considered.
Either way anger is not the appropriate response. It has protected you from cancer.

@HarebrightCedarmoon

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?

In response to this: it is astoundingly uncommon to develop cervical cancer without HPV. 99.9% of cervical cancer cases or something like this have HPV. So now they test for HPV first, and if positive then treat. Makes much more sense. However if CIN3 or carcinoma in situ they will treat regardless of hpv status

Thanks @RobinHobb, that's very reassuring.

@Partey
Regardless of your life experience, you said you’d beg for a hysterectomy, ergo major abdominal surgery, which takes 2 years on average to completely heal from and has a woman out of action for 12 weeks minimum rather than have this simple and relatively painless procedure. Commenting on your mum’s hysterectomy is rather like saying oh my partner is disabled so I know what it is like to be disabled. I’m disabled btw.

Perhaps you have other reasons to desire a hysterectomy. But you haven’t shared these. So at face value, if you can’t see your original comment for what it is, I think we will have to agree to disagree.

I get you OP. It's pointless to say "be grateful you didn't have cancer". Well no she didn't. She never did. You may as well say "be grateful you have a house to live in" or "be grateful you have two legs". I'm sure she is grateful for those things but they aren't related at all to what happened. People often equate having a possible diagnosis of something, then finding out they don't have it, with having something and getting treated for it. The two aren't the same. It wasn't a close call.

Having said that I don't think you can dwell on this, as it doesn't sound like a mistake exactly, like the doctor read the wrong notes or something. Just an unlucky event.

The cervical screening program has been good, however like all screening programs it has issues. In order to convince women to get their tests it has really used the scare factor. This is now backfiring with the introduction of the HPV test and increased screening interval, women don't understand how it could work if everything they have been told in the past is true.

I think your issue should not be with the fact that they erred on the side of caution, but rather that you had such a bad experience with the LLETZ treatment. I have had that treatment and barely even noticed. No pain, only spotted for a couple of days but no bleeding, no other side effects at all. I don't know if it's possible, but maybe you could speak to the clinic and discuss the issues you have had (or issues you fear), but I think they were in the right to treat what they were presented with at that moment in time.

Dctors can only base their decisions on information available at the time.

What do OP and those agreeing with her that this was unnecessary treatment think the health professionals should have done when they saw the CIN2 result?

Mine wasn't cervical, it was thyroid cancer. I had some nodules picked up on a CT scan for something else. Told it was probably nothing, but needed USS. At USS told it was probably still nothing, but needed biopsy. The first two biopsies didn't show anything, but didn't get enough cells. Third biopsy looked like cancer. Told it was a bit borderline, needed that side of my thyroid out, which was then sent for histology, and to the regional MDT. Which decided it was bigger than expected, and needed a repeat operation to take the other half out, radioactive iodine, and a variety of fancy scans.

So, technically I was falsely reassured, and then had to have two operations when they could have done the whole thing in one go, significantly improving my recovery time. I'm not in the least bit cross. Because I know that at every single step people went with the correct choice for the best information they had at the time.

I think what you need is a debrief, so you can talk with someone who understands your case to check whether each step was done correctly, and appropriately, with what could have been known at the time. If it was, then noone did anything wrong. If it wasn't, then you can decide what you want to do about it. But new information emerging which with the eye of hindsight means something would have been done differently does not necessarily mean that anyone did anything wrong.

@Mummyoflittledragon I tend to agree with your posts. I am not by any means looking to minimise at any level how traumatic some posters may have found their lletz. But as someone having one within the next month? This thread has put the fear of god into me.

Now fortunately it won’t stop me going ahead with it. I don’t have cin 2/3 but I do have 3 years now of recurrent abnormal smears with other symptoms now appearing. They could very easily be peri menopause related but given my gynae history, my case went in front of a team for review and they have recommended a lletz as that is the only way they can actually see what is really going on and rule out anything more worrying.

Drs are not magicians. They have to work with what is in front of them and try and make the best possible decisions. I too may be going in for a complete unnecessary procedure, but it’s either that or I ignore them and take my chances.

I for one cannot fathom why posters can understand why the OP is so angry. What exactly should have been done differently in this treatment?

Also, based on what I’ve read. If they hadn’t offered this treatment and the Op did then develop cancer, it would have been medical negligence. 🤷🏽‍♀️

@Mummyoflittledragon in your opinion/experience it’s simple and painless. That’s not everyone’s experience. The same as not everyone will find it traumatic. I think people should be honest about their experiences. I’m still angry about how many people played down the recovery time for the LLETZ, no one told me about risks of premature labour as a side effect until I was pregnant, no one told me I’d have repeated infections for months after. Nothing would have stopped me from having it as it is necessary but I was definitely uninformed and definitely found it traumatic.

[quote sassbott]@Mummyoflittledragon I tend to agree with your posts. I am not by any means looking to minimise at any level how traumatic some posters may have found their lletz. But as someone having one within the next month? This thread has put the fear of god into me.

Now fortunately it won’t stop me going ahead with it. I don’t have cin 2/3 but I do have 3 years now of recurrent abnormal smears with other symptoms now appearing. They could very easily be peri menopause related but given my gynae history, my case went in front of a team for review and they have recommended a lletz as that is the only way they can actually see what is really going on and rule out anything more worrying.

Drs are not magicians. They have to work with what is in front of them and try and make the best possible decisions. I too may be going in for a complete unnecessary procedure, but it’s either that or I ignore them and take my chances.

I for one cannot fathom why posters can understand why the OP is so angry. What exactly should have been done differently in this treatment?[/quote]
It really isn’t that bad. Not much worse than a smear, it just lasted longer and created yukky discharge. This was a long time ago for me, early / mid 20s - mine wasn’t caused by HPV btw but as a reaction to the depo pro contraceptive.

It was unpleasant at the time but it didn’t occur to me I’d need a parent or partner with me and as I was young and it being the first gynaecological procedure apart from the smear, it was embarrassing.

It felt weird and uncomfortable as I was numbed in the the area… and as I say, there was the obvious indignity of it for a young woman, which I no longer would feel. I didn’t really look albeit they showed me the tool prior to insertion. I had a burning sensation and was uncomfortable after for a few days, maybe a week and I had discharge for maybe a couple of weeks.

You’ll be fine. Honestly.

You had the procedure and risks explained and signed a consent form.

Nobody forced you.

Be happy you haven't got cancer.

@SameToo
Cross post. I refer you to my post above. Nowhere did I say it was painless. I was also never informed of the risk of premature birth. I understand different women have different thresholds and said op should aim to deal with her experience and move on. In no way did I say to brush her experience under the carpet. Staying stuck in anger is the opposite of dealing with something in your past, which you cannot change.

Op you have children - are you thinking of having more? Is that part of your concerns about the side effects? I had the procedure and lost 1 inch of my cervix and had IVF a month later and carried two giant twins without any of the issues you mention are side effects if that helps. I get the weaker cervix risk but I can't see how it effects periods or bleeding or infections or anything you list as the cervix is about 7 inches long from memory.

False positives that lead to treatment are very common with smear tests. The general public is not given this data in a comprehensive way when the push to have smears is given.

@RobinHobb That’s not true though, is it? Screening detects cell changes, it does not prevent cancer.

@Writersblock2

Dysplasia precedes cancer; a cancerous cell is one that will have abnormal changes.

[quote Writersblock2]@RobinHobb That’s not true though, is it? Screening detects cell changes, it does not prevent cancer.[/quote]
As I understand it screening detects cell changes and subsequent treatment can prevent potential development of cancer by removing affected cells.

@ittakes2

Op you have children - are you thinking of having more? Is that part of your concerns about the side effects? I had the procedure and lost 1 inch of my cervix and had IVF a month later and carried two giant twins without any of the issues you mention are side effects if that helps. I get the weaker cervix risk but I can't see how it effects periods or bleeding or infections or anything you list as the cervix is about 7 inches long from memory.

Are you perhaps mixing up inches and centimetres?

Fwiw to anyone who reads this thread and has concerns, I had the LLETZ procedure after a diagnosis of CIN3. It wasn't particularly pleasant but nor was it awful. I'm so glad I had it done. With two young kids I couldn't have lived with the risk. I've had yearly smears since which have been normal.
Oh and NEVER delay your smear on the advice of a g.p. because you're breastfeeding and 'your cervix can be a bit dry, so wait until your periods return.'

Thank you @disconnected101 for the reassuring words.

@makemeacake I am a biomedical scientist who worked in a cellular pathology laboratory where we processed two of the consultants private work onsite. We prepared them on a T2000, stained them and then gave them to the consultants for reporting. When I refer to a consultant I am referring the the Histopathologist Consultant who was reporting the slides, not a gynaecological consultant/nurse who might take the sample.

In the NHS cytoscreeners screen the slides, they were then reviewed. Consultants or Advanced Practitioners check certain slides. (I can't remember what the conditions were, but I think it was malignant/CIN3?). I believe they must screen 1000 a year to remain competent, which they did not.

Thanks 4 your insights, gmailconfusion2

I had a laser cone for cin3 and whilst I would have been happier not to have it I’m glad I received treatment and clear margins after..

I think YABU to be angry, it’s still cin1 and Lletz can actually get rid of hpv and the cervix does regenerate , albeit maybe not 100 pct of what was removed . This removes a lot of the risk you mentioned like preterm birth, weak cervix etc.
As PP said, cin1/2/3 not binary, u might have different depth if affected cells at different areas, and given the side effects are not that bad vs the potential outcome of no treatment ( further development of the condition , eventually leading to cancer) maybe try shd focus on the positives and move on..