Has anyone experienced conservative management of CIN2?

Before I start, I just want to mention that this is just my choice. The decision to undergo or not treatment is very personal and should always be respected.
I recently got offered the LLETZ treatment for CIN2. I’m in my early 30s and yet to have kids so it felt too invasive and the risk to future pregnancies too high. I have discussed the risks of treatment or choosing conservative management with more than one medical professional. Getting a piece of my cervix chopped off to hopefully treat the abnormal cells is a risk I am just not comfortable with.
What really was disheartening was that the colposcopy team did not even mention the conservative management option even though I fit the criteria, nor did they even mention any risks to preterm birth following treatment. I found the conservative route almost by chance when reading the guidance following a less than informative colposcopy appointment. I understand that by not going under the knife (or large loop on this occasion) I don’t fit into their targets and numbers, but surely I have the right to body autonomy!
I was wondering if anyone else has had experience with conservative management of CIN2?

I have heard of other ladies who have been given the conservative route with CIN2, but it is unusual. I can imagine your medical team are a little put out, because there is a tendency to pop the next person onto the conveyer belt of treatment and not question it. They have a formula and that’s what they want to apply. I think it’s possible that if you’d been in a different area with a different team this would have been discussed as an option, taking into account your youth and the fact that you’d want a family.

The important thing is that you get checked regularly and do what you can to boost your immune system - maybe even ask your GP if you can get the vaccine, if you have not had it already. I think perhaps if the team see that you’re actively trying another route, rather than just refusing treatment, they will be happier. I do hope things work out for you. X

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Thank you for the support and the reassurance!
It felt exactly like being coerced into going onto the conveyor belt. The colposcopist nurse was more concerned about explaining what anaesthetic they’d use and how long it would take her to perform than actually ask if I planned on any kids. Sadly, the care I was initially offered felt very ‘tunnel vision’ and it took courage to question what their “routine treatment” could cause me long-term. I was the one who asked the question about alternatives. I have already agreed to more frequent colposcopy follow up so they can keep a closer eye. I had not given any thought about getting the vaccine, thank you for the idea- I shall discuss with my GP.
This my main reason for posting this: I could not find much information out there from anyone who has decided to take the conservative route.

Hi EllaM

I haven’t had the same experience as you but I agree with what Jacks has said above. I just thought I would add on some references you might be interested to look at - disclaimer they do not necessarily reflect my views

2018 the British Medical Journal published a paper about untreated CIN2. It doesn’t make for light reading so if it feels too daunting you might want to just focus on the Abstract at the beginning and the Conclusion at the end - see following link

https://www.bmj.com/content/360/bmj.k499

The following link is easier to read: https://blogs.bmj.com/bmj/2018/02/28/treatment-or-surveillance-for-cin2-when-less-is-more/

I hope all goes well for you.

x

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Hi Jazza,

Thank you for the link- interestingly enough that article is what made me question whether going for a LLETZ would be the right decision for me at this point in time. It is a metanalisys of other studies which I found particularly useful as a lot of the literature is for small sample groups. It’s a really informative read and I do agree it is not the lightest reading, but I’m so glad I have read (and now re-read it).
Thank you for the support!
Ella

Hi Ella,

I’m really glad I’ve come across your post as I too couldn’t find much information from people who had chosen the conservative route.

I had my colposcopy exam on the 06/01/2022 and received a letter from the clinic advising me that the result of the biopsy was ‘CIN abnormal cells, not cancer’. They wouldn’t disclose the grade of CIN over the phone and said I would be able to ask the consultant at my appointment for treatment. I eventually got the diagnosis of CIN2 from my GP but highlighted that I wanted to discuss my options before the appointment for treatment!

I then sent an email to the colposcopy clinic asking if I could have treatment under general anaesthetic and expressed my concerns about the lack of communication regarding my options and the risks associated with the procedure. Not long after I received a letter detailing treatment options which were cold coagulation, loop treatment or conservative management.

I should have mentioned that I am 30 with no kids at the moment but I would like to have kids in the near future. I’m on the fence at the moment to be honest - I’d like to opt for conservative management and have a positive outcome where the CIN2 regresses. My concern is that it progresses and then I need more of my cervix removed which will have a greater impact on future pregnancies. Apparently you can only have the cold coagulation procedure done once and it seems less invasive than the loop/LLETZ so I was considering that as an option.

I guess we just do what feels right for us! I wish you all the best - keep in touch x

Hi R,

I’m glad my post has helped you consider more options. The lack of transparency when it comes to disclosing information is infuriating. Thank you for sharing your circumstances, I completely understand your feelings and second your thoughts.

I think as women who are yet to have kids it’s absolutely critical that we have all the necessary information ahead of any invasive treatment even if the risk to future pregnancies is relatively low. My experience has been pretty poor to date: I initially was scheduled (without even being asked) for LLETZ on the 19th of April, but results would have been disclosed to me for 2 more days, which was ridiculous. I had to call the hospital and request a copy of my own test results.

I am also doing research into less invasive options, but sadly my hospital only offers the most invasive treatment or conservative management hence I had no choice.

All the best in your journey! Drop me a line if you ever feel the need to talk

E

This is the information from the Jo’s Trust info pages:

With the right management, the risk of cell changes developing into cervical cancer is low. Most cell changes do not develop into cervical cancer.

Because most cases of CIN3 and CGIN are treated, we don’t have much data on how likely they are to progress into cervical cancer or regress back to ‘normal’ cells. The numbers given in the table below are estimates and based on the best studies we currently have (see references for more details).

Type and grade of cell change Regress Stay the same Progress
CIN1 60% 30% 10% (to CIN2 or CIN3)
CIN2 50 to 60% 32% 18% (to CIN3)
CIN3 32 to 47% (data not available) 32% to 40%

The likelihood of progression or regression depends on your personal situation, including factors like:

  • age
  • grade of CIN
  • whether or not you smoke
  • whether you have a condition that affects your immune system (for example, HIV).

I hope this is helpful!

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Hi Ella,

I completely agree - a friend of mine was booked in for the LLETZ no other options discussed and was only told at the appointment that it carries a small risk to future pregnancies. That was my concern as I think if I’d attended the appointment with reservations but knew I’d be put on a waiting list I might have just went ahead with it on the day!

I’m not sure why they are so reluctant to share our medical results with us. I could understand if there was an appointment prior to treatment to discuss the results and our treatment options/risks but that was not the case!

I actually just read a post on here where someone got the cold coagulation treatment and it caused a lot of scar tissue to develop on their cervix which impacted the result of follow up colposcopies :frowning:

I’ve called the clinic and opted for conservative management so my next appointment will be during the month of July.

I wish you the best on your journey too - I’ve bookmarked this post so I’ll check back in and see how you get on!

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Thank you so much for the concise information, Jacks, it really is reassuring to know that there is a lot of reassurance in the numbers

Thank you, R!

In my view, treatment at this point would not feel like a choice, but like coercion hence I have requested conservative management. I have not been had a confirmation if I even can be offered this route, but that is for me to fight for. Sadly, I think it’s just not a priority to spend long time with patients to discuss options and risks so we are just given superficial information which basically covers how long it takes and how long until your next appointment. The reality is: clinical time is expensive and any time spent with a patient taking is not spent treating another so we are often given leaflets instead of answers. Hence, I wanted to start a conversation somewhere likely to find someone else facing a similar situation.

All the best in your journey and I hope everything goes well for you! Keep in touch x

Hi Ella,

I read a few articles online last night about the use of AHCC supplements to boost your immune system and potentially help fight off the hpv virus. I’m obviously not a healthcare professional but some of the articles were girls discussing it on this forum too. People seem to be using it along with various other vitamins but I just got the AHCC tabs along with a cod liver oil/multivitamin. Whether it helps or not I’m unsure but I thought I’d give it a bash and see how I get on at my next colposcopy.

x

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Hey ladies! So I am 34 and on year 5 of CIN 1 positive HPV. I go for my 3rs colposcopy next week. I have pushed off LEEP due to the horrendous stories I have heard. I don’t want more children, but my sex life, daily function, and period schedule I want to preserve if I can. I have been told that my pap smear may have had higher grade abnormalities… I have braced that this is the news I may receive after my colposcopy next week. Either way my plan of action if it does come back CIN2… Is to ask for cryotherapy/cold coagulation. It seems less invasive. My doctor already argued and said this is a bad idea because they can not be sure that they get all the bad cells. My argument is… If I am still HPV positive the cells will change again anyway even with leep so why start cutting chunks of the cervix off if I am still HPV positive. I definitely feel like we need to be our own advocates when it comes to what we want done to our bodies.

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I had cold coagulation for CIN3 smear. The colposcopists suspected CIN3 was an overgrading so she used a punch biopsy to remove the CIN areas and then did cold coagulation. The biopsies came back as CIN1/2 and koliocytosis. Have a review in August so hopefully will be good news. It’s the first treatment I’ve had for CIN so feeling hopeful.

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Hi R,

I’m definitely going to look into it. I’m already on a few food supplements so this might be a good addition. Thank you so much for sharing your findings

X

I don’t really understand this one, you can have kids after Lettz, my sister did!

I am having it next week for CIN 3 and I’ve advised them of plans for trying in the next year - I’ve not been told I can’t. I know it means you may deliver a little early, but they keep more of an eye on you so why would you be put off? I’m a bit confused.

I’ve had no lack of transparency I had a letter telling me of the results being CIN 3, to be fair am I being naive or should I look into this other option? I am booked in for the 19th so don’t really want to delay treatment. But my sister has had 2 babys after Lettz so I feel reassured. Hmmmm

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Hi Emy,

If you look into my original post I did say the choice for treatment is a very personal one. And I still believe that each woman should have free choice. You are absolutely right that the risk to early delivery is relatively low, but this is a surgical treatment. Everyone makes decisions about treatment differently: some people don’t want the details and just want the treatment; others (me included) would research every possible outcome and risk.

If you believe treatment is the best option for you, especially as a diagnosis of CIN3 is less likely to regress without treatment, then just make sure you discuss with the medical team on the day. Your medical team are probably much better equipped to answer your questions as this is their area of expertise. As a patient you should be free to ask questions about possible risks, recovery times, long-term effects on periods or sensitivity… Make sure you are comfortable with your choice.

I hope everything for you goes well! All the best wishes x

E

Thank you I googled some articles, never realised it could affect you as much as that! At least I have more questions to ask now before the procedure.

All my smear tests came back no abnormal cells it was only the biopsy which came back CIN3 so it is all very confusing. She did mention it was a “tiny bit in the corner” so maybe it was missed and if it is just a small area then sounds like it’s not as much as they would take from some people - so I will check everything before it gets done or if they could do the alternative method :slight_smile:

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Jle please keep up posted on how it goes for you! As always wish you ladies nothing but the best as this is such a daunting experience to go through!

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Based on my work in obstetrics early delivery is associated with other risks for mother and baby. My issue would be that these treatments are seen as acceptable when they are not and we are denied the vaccine if over 25 whereas men can get it free up to 45.

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