High risk HPV strain

Hi all, thank you so much for all your kindness and support.

I’m still awaiting the results of my 5 biopsies, I’m now at the 2.5 week mark. GP has said I can start chasing on Monday when I hit the 3 weeks since biopsies taken mark.

I’m doing what I can to be productive and just feel like I’m doing something to combat this virus - AHCC, Papilocare, other immunity boosting meds, healthy diet, plenty of exercise and zero alcohol. I’m also having 3 doses of Gardasil 9 as is my partner.

I’m wondering if there would be any value in knowing what exact strain of HPV I have is, and if so what I can do to find this out. I’m in the UK and have the results of a cervical smear test, which does just say “high risk HPV”, I do have the lab details etc. Is it worth asking or doing a Superdrug HPV test to find out more? Many thanks for taking the time to read this.

It’s great you’re boosting your immune system!

I’m not sure if there is much value. Strains 16-18 are the ones that caused the majority of cervical cancer pre-vaccination
There are other high risk strains that have the potential to as well but not sure how frequently that happens

You could spend the money by doing a Superdrug test but I don’t think it will changed how you are managed by the NHS x

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Thank you so much for taking the time to respond, I really appreciate it. For now I’ve decided that I agree, there’s not much use for now in knowing what specific strain I have. I think I’m just desperate for any information really, I feel very in the dark at them moment. It’ll be 3 weeks since the biopsies on Monday so hopefully next week I’ll know more.

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Hi @Ilovesquirrels

There honestly isn’t any value in finding out a specific strain number. The nhs is testing for high risk hpv and that’s all that actually needs to be identified.

A strain number doesn’t help you any, or influence any potential treatment so I personally would use the money you would potentially spend on another test on something nice for yourself!

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Thank you so much for your reply; you speak a lot of sense. It’ll be 4 weeks since my biopsies on Monday so hopefully I’ll know more about what is going on soon.

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Hi, I also have HPV, and have only known since they changed the testing a few years back. I must have had HPV for a long time. I have been researching what I can do to help myself. I have purchased AHCC and so far been taking them for 6months but only two capsules in the morning. I also have been improving my diet. I noticed you mention having the vaccine Gardasil 9, I’ve done quite a bit of research on the vaccine, as I’m still able to get one privately being 39, however it mentions if you currently are infected with HPV then the vaccine doesn’t work :-/ Just wondered if there was more info I haven’t read, as I’ll do anything to help rid this from my system, it’s drastically changed my mental health and feel like I’m just a ticking time bomb. I don’t understand why there is no cure for HPV yet! They want to increase the time period to screen people to 5 years only due to the successful vaccine research, but people over a certain age who didn’t have the vaccine in school are just left with this yearly dread of HPV positive, it’s not fair :frowning:

Hi there, thanks so much for your reply and I’m so sorry you’ve been through this too - I completely empathise, I missed out on the vaccine in school by just one year and honestly I’m fuming that no one told any of us how important it was (well, I wasn’t told anyway). In terms of why I chose to have the vaccine, I’ve seen discussed on here that apparently there has been some relatively new research which suggests that it potentially could help prevent re-infection (hence why my partner has chosen to have it too) or to possibly help clear HPV (though to be completely honest I’m finding it hard to find a concrete source for this). I also spoke to the helpline here which told me that it was worth me getting it as it wouldn’t do me any harm and would protect against different strains if I ever were to come into contact with them. I’m not a scientist or medic but my understanding is that the efficacy of the vaccine in people already living with HPV is something that is currently being looked into - my personal thought was that the only harm it would do us was financial and I’m very lucky I had some savings I could dip into to finance it. I think if money is an issue it’s maybe not worth it as I don’t think there’s a huge evidence base for it being beneficial at the moment, but I felt for me personally it was worth a try. I’m going to try and post a few studies I found recently (full disclosure I’m not a medic or scientist) which helped inform my decision but of course I don’t want to spread any kind of misinformation and I encourage anyone else to make their own informed choice. I hope this is helpful and apologies if it’s not a concrete answer.

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https://time.com/3828839/hpv-vaccine-works/

https://www.sciencedirect.com/science/article/pii/S0264410X23009908

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9496656/

Further caveat is that I don’t think these studies refer to Gardasil 9 specifically.

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I’m had the LLETZ 9 days ago now and me and my boyfriend are scheduled to get the vaccine tomorrow! Im also having it for the reasons you mentioned! I just want to do everything I possibly can to help my future immune system

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Thank you so much for your reply and the links :smile: I do have some savings so will look into it for sure. I think it’s so awful that they are leaving women to deal with this on their own, it’s scary to have high risk HPV but they just say “oh we’ll see u in a year” :disappointed:Thank goodness for forums this like one so we can get help and guidance from each other going through it. I have also been reading about a trial that just finished in January for a cure to HPV called HPV001, it took place primarily in Oxford UK. Here is a link to some info on it:

https://www.wrh.ox.ac.uk/research/cervical-neoplasia/news/firstpatientdoseinHPVclinicaltrial

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You are so welcome, happy to help, sorry that it’s not more clear cut but it gives some food for thought I think. I absolutely agree, I feel like half the shock of the diagnosis was that I had absolutely zero knowledge about this and honestly it’s been so hard to find real information and support so I’m so grateful for Jo’s Trust and the forum’s in particular. I had no idea about the therapeutic vaccine either that is excellent news, I really hope we can all benefit from it very soon. Sending you and all here hope and kind thoughts, this stuff isn’t easy.