CIN3 - LLETZ Treatment - Advice from Women (Married / Long-Term Relationship)

Treatment for cell changes (abnormal cells)
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Hello,

I am 25 years old and had my first smear in November 2023. The results came back showing high-risk HPV infection and abnormal cell changes. Nobody actually tells you about HPV growing up so I had no clue what this meant. I spoke to the mums at work and quite a few had received the same letter but said it would just be a quick biopsy to have a more in depth check and then everything will be fine.

I went to a coloscopy on 1st December 2023 and before I was even looked at I was told by the doctor that I had precancerous cells and would require LLETZ treatment. At this point my head fell off. I have also had the HPV vaccine in school so I was not sure why this was happening. She made it very clear that it wasn’t cancer but if left untreated there is a high chance the cells would turn cancerous so I agreed to the treatment there and then. After examining my cervix she could see the abnormal cells covered most of my cervix and I had CIN3 so she did the treatment and then I was told I would have a follow up appointment in 6 months. No details were mentioned about this follow up appointment or why I had to have it so I just took it as a check up and to make sure they had got all the cells.

I came out of the coloscopy feeling extremely overwhelmed and unsure as to what had just happened. However, after a few weeks I felt more positive because at least the cells had been found, I had been treated and, at this point, I was under the impression that the treatment had got rid of the cells and the infection and that was the end of everything. Other women I spoke to would say ‘at least you have been treated and it’s done now’. So I continued to live my normal life.

I went through the normal 4 week healing process and then was fine. However in February 2024 I bled quite heavily for two weeks. I have been on contraception for 9 years and not had a period so I was worried as to why I was bleeding. I had a tummy ultrasound and a vaginal ultrasound privately and thankfully the doctor confirmed that the bleeding was because I had been on progesterone for too long and nothing to do with the LLETZ treatment and my cervix had healed well.

We then got onto the conversation of HPV because I asked him if he could still see any of the abnormal cells. He replied that ‘he wouldn’t be able to see any abnormal cells as this can only be done under a microscope at your 6 month follow up when they check and swab you to see if your immune system has fought off the HPV’. It was only at this point I realised that the LLETZ treatment might not be the ‘end of everything’. I asked the doctor what would happen if you can’t fight the infection to which he replied ‘we don’t need to discuss that right now’. From reading online, I now understand that you can only have so many LLETZ treatments before having to have a full hysterectomy? I am now back to constantly worrying as I am 25 with no kids.

I get that doctors don’t want to worry but I feel like I am still not getting full details about this infection and learning about it as I am going through it instead of already being aware.

Question 1:
Does anybody have any positive experiences of having CIN3 and having LLETZ treatment and it actually clearing the infection?

I understand it to have a high success rate but then I read on here of women having multiple LETZ treatments and the infection still not clearing.

Question 2:
I really need the advice of women who are married or in a long-term relationship.

I have been seeing a guy throughout this whole process. I had sex with him before the LLETZ treatment and sex with him after the LLETZ treatment (thinking the treatment had cured everything).

I have read online that if you have HPV it is highly likely that your partner will have the same strain of HPV. In 90% of cases this is fine because their immune systems will just naturally fight it but in my case that clearly won’t happen.

I firstly feel worried because I might have infected him. However he is 29 years old so may have already had and fought off the strain of HPV I had/have. Should he have caught the infection, his immune system may just fight it off naturally.

I am more concerned that there is a possibility that he could have caught the HPV infection from me, I have then had the LETZ treatment and then he could have reinfected me, to which my immune system can’t fight the infection off naturally.

Are there any ladies who are married or in long-term relationships that are happy to share how they approach having sex with their partner after treatment for CIN3, knowing that their partner will likely have the same strain of HPV that your immune system struggles to fight off and can cause your cells to change?

Is there anything you actually can do or do you just carry on as normal?

This may sound dramatic but I feel like I can’t have sex with him again or anybody else in the future.

Thank you so much for any advice you can give me!

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@Lucy98 I’m in the same situation as you I’m 26 recently had the LLETZ for CIN3(11 days ago) ! I can’t answer question 1 yet as Im still waiting for my further results from the LLETZ and what’s next but in terms of question 2

I’ve been with my boyfriend for 7 years now and also read about how if you have HPV there’s a good chance your partner does too! I spoke to my boyfriend about it all he’s very understanding as he had testicular cancer a few years ago so he’s so understanding about the whole thing! Neither of us had the vaccine so the first thing we’ve done is get the vaccine together we got our first dose yesterday (although it doesn’t get rid of the infection I read it can help your immune system with getting any other strains and reoccurrence) in addition to that we’re both taking supplements to try and boost our immune system so we’re taking AHCC, vit d & c and zinc! We’ve agreed that when the time comes to have sex again once I’ve healed that we will use condoms until I get an all clear for HPV that way we’ll know it’s gone (we don’t normally use condoms but came to the conclusion it’s better than getting a potential reoccurrence)

I suppose it depends what you’re comfortable with but I think communication will be the key! Hope this helps xx

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@Alexarmac Thanks so much for getting back to me! This is really helpful.

Firstly, I hope you’re okay! I feel like you have a very positive outlook on this horrible situation which has definitely changed my mindset so thank you.

I have my follow up in May time so hopefully I will have a positive experience to share but either way I will let you know how it goes.

That is really nice to hear that your partner gets it and is so supportive! Takes some of the stress off you!

I haven’t known the guy I am seeing for that long (only met him towards the end of last year) so I don’t feel like I can say anything or know how to tackle this one. I will definitely use condoms but I am very aware that I could potentially be making myself ill again if I was to have sex with him (if that even makes sense) and it’s really annoying having this thought in the back of my mind when I have know way of knowing if he has even caught the virus. I literally don’t know what to think but I suppose you can’t let it stop you living your life.

Noted on the vitamins!

Thanks again for your help! Xxx

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@Lucy98 I’m glad it helped! I’m doing ok like you just wish it was all done with! Hope you’re ok too! Yes let me know how you get on in May, fingers are crossed for you!!

Haha I am trying to stay positive, don’t get me wrong there’s been plenty of tears on my part because I didn’t understand any of this until going through it but I’ve been trying to think about it all logically as best as I can instead of with my emotions (which is hard) lol! This forum has really helped me to do that, to process things because I’ve found it easier than talking to say like friends who haven’t been through it!

Like you say, you can’t stop living your life all you can do is take whatever precautions you’re comfortable with and try boost your immune system to fight it! I suppose it can be an awkward one knowing where to start if you haven’t been with your partner that long but you’ll probably feel a weight off your shoulders if you just try talk to him!

What is it you’re worried about is it just not knowing what to say to him and wanting him to understand so he can also try boost his immune system too or are you worried about his reaction? (If you don’t mind me asking)

Xx