HPV and CIN3 - please help / guidance / support

Hi Fi29 and welcome to our group.

I’m so sorry to read what’s happened to you-this must have been a devastating blow for you to contend with and must have been a very difficult decision to make in an incredibly tough situation.

I don’t have any personal experience to share as I had cancer rather than abnormal cells so I hope you don’t mind me replying here just to say hello and try to offer you some support. 

Once you are treated, that will hopefully mean that the abnormal cells will be successfully removed, and you may not have this occur again. The treatment for abnormal cells, even at CIN3, can be very successful and you won’t necessarily have cell changes in the future. It is possible to clear the hpv, but not possible to cure it, so the hope is that your immune system can make it dormant so that it doesn’t cause any cell changes. 

You are right to think that your immune system can fight the infection, and having a strong immune system is key. The best things you can do are eat well, exercise and not smoke, but there are no magic pills you can take to cure this. You may well read of miracle “cures” on the internet which are typically expensive but are not proven so there’s no guarantee they would have an effect but there would be no harm in taking something like a multivitamin. 

When our immune systems are low, it is possible for hpv to become active again, but you should be closely monitored now so that if there are any changes they can be dealt with quickly, and it is not necessarily the case that you would have a active hpv infection again. I really hope your treatment will be successful and you have no further issues. 

If there’s anything else you want to ask, please feel free to do so. There is also a charity in the UK called Jo’s Cervical Cancer Trust which has a lot of information on hpv and lots of forum posts from young women like yourself where you may be able to connect with others in the same situation.

Sarah xx

Hi Fi29

Have you had ever had the HPV vaccine?  If not I believe you can have it under the NHS until the age of 25y but thereafter I think you would have to pay.  The vaccine won't help your current situation but it helps to provide immunity against several strains of the HPV virus, some of which you may not yet have been infected with.  Your GP will be able to advise.

Hi Sarah, 

thank you for your kind words I appreciate it. To be honest my mind is just all over the place at the moment obviously just thinking the worst. My doctor even said to me he doesn’t want to think about how things would usually ‘play’ it because obviously my body isn’t doing what it usually does with other people. He was shocked aswell to find this out. And also, I’m worried for the treatment as even with the biopsy I thought I was completely prepared for it but when I did it it hurt me a lot (I’m usually very ‘strong’ in clinal settings’ and I had really bad cramps after and walked out basically crying - it definitely wasn’t what I was expecting. And even reading online studies it says that once they do treat these cells they could become recurrent and if that constantly happens it’s likely they’d want to do a hysterectomy. 

to be honest it all feels a bit too much for me right now and I’m thinking maybe I made a mistake with terminating my pregnancy now that I’m reading all of these and I don’t have anyone to speak to because I don’t want to add any stress onto them

thank you <3

Hi Beth, 

Yeah I had my HPV vaccines when I was 12/13 so I’m just assuming it must be one that wasn’t covered in the vaccines or the vaccine unfortunately just wasn’t effective for me. 

I’m thinking more of ways that I could help boost my own immunity as I’m not exactly very healthy. Easy fast food all the time, fizzy drinks no water, no exercise, used to heavily smoke. My doctor told me that stopping smoking would help it regress back.  So I’m thinking maybe if I start being more healthy my body will start building immunity. 

also, I’m sorry to hear that. How are you now ? How did they treatment work for you? 

Hi Fi29 

It’s really hard for you not having anyone to speak to after the trauma you have been through. Yes, it’s true abnormal cells could recur, but it doesn’t mean to say that it would happen. A hysterectomy is something that could potentially be in the future but only if other treatments didn’t work prior to this. Given your age, this is not something that would be considered lightly-it would really be last resort.

And the hysterectomy would not clear the hpv virus, so post hysterectomy checks are still required as it’s possible for abnormal cells to develop in the vagina or the vaginal cuff. Unfortunately a hysterectomy isn’t a cure all. 

However, talk of a hysterectomy is not for the moment. The LLETZ treatment used to remove abnormal cells is the first thing, and it is possible to have more than one of these treatments. How much of the cervix is removed would determine how many you could have as it depends on what is left of the cervix after treatment

I didn’t have any pain getting punch biopsies but I know some ladies do so I don’t think you’d be alone in that! You could discuss your worries in advance of any treatment, as it is possible to have a LLETZ under general anaesthetic, if you feel you’d need this in order to cope with it. It may mean you’d have to wait longer for treatment as this would involve a theatre and anaesthetist etc so is more involved than treatment in clinic with a local anaesthetic. 

Please try not to think the worst or let your mind run away with thoughts that are not facts. I really don’t recommend google at this point as it is more likely to make you anxious than calm your fears. 

Just take one day at a time for now-you have been through a lot and need time to process what has happened. Try not to look back, as you can only go forward now, and you could end up just making yourself miserable with thoughts of “what if”. 

Sarah xx

Hi Fi29

I'm OK thanks for asking.  I was discharged for my 5 year post treatment follow up last year: 'no evidence of disease'.

I second Sarahs advice about eating well, exercising and not smoking to support your immunity.  From what I've read and heard, there is a strong consensus that not smoking reduces the risk for cervical cancer.

If changing unhealthy habits feels daunting, getting some support can be a way forward.  Your GP might be able to help e.g referral for quitting smoking, referral for Slimming World (if BMI over 30) or maybe a dietitian, possibly exercise on referral - I'm not sure but always worth asking.  Something that helped me  was to see a personal trainer who was also qualified in nutrition: I was on a budget so just had a few sessions but it helped me get on track with a healthy lifestyle.