Older with persistent HPV - is this my life now?

Hello,
I’ve been lurking on these boards for a while now and thought it was about time I’d sign up, say hello and reach out to you lovelies.

I’m 49 and have battled with persistent HPV for about 10 years. I feel as though I’m in an ongoing purgatory as I have high risk HPV and all of my smear tests (bar one in 2018 - which was such a tease) come back abnormal. I’m referred to colposcopy each time but have never needed any treatment. At my last colposcopy 1 week ago I was put back on the 12 month ‘wait and see’ thing again, it feels like I’m doomed to being a ticking time bomb.

Is there any one else out there who is in a similar boat? Is this our life now? Will I end up getting cervical cancer or one of the other ones - anal, oral etc? I’m in a bit of a hyper vigilant state about it.

I’m not the type of person who is very good at sitting still waiting for stuff to happen. I tried signing up to the HPV vaccine cure medical trial and almost got in but ended up being ineligible due to not having had a smear test between March '20 and March 21 (because my last smear in 2018 came back normal and I was put back to the standard 3 years for smears). I’ve just started taking AHCC in earnest and I get my partner to take them too as I’m convinced that we must just be re-infecting each other.

Feeling very down today. Any pearls of wisdom or solidarity welcome.
Thank you x

Hi there, I’m 35 and I’ve just had my first abnormal smear result, which is sort of in a similar boat in that having always attended my smear tests since first being called at age 25, and my results have always been negative (cytology). My NHS smear test in February 2021 - the first since the HPV primary screening was brought in - showed HPV positive, cytology negative, with no cell changes. I have since had a private cervical screening in September 2021, which has yielded the same result: HPV, no cell changes. The consultant has suggested I come in for colposcopy, which is happening this week.

I was not vaccinated against HPV because it was not available when I was at school and it has never been offered to me since. Being HPV positive, and not knowing how long I have had it, I obviously want to do everything I can to get rid of it. My consultant (seen at a private clinic) said that there can be some success with getting the vaccine, even when already infected with HPV, as it can help build your immunity to fight it. Is there any solid evidence for this? And is there anything I can do to help maximise my chance of getting rid of HPV?

Although it’s been a much shorter time for me, I am worried about that sense of HPV limbo, of having a virus that you can’t get rid of and, although of course you can monitor it, there’s nothing you can do except wait around waiting for it to cause you harm.

What is AHCC, please? Thanks!

Hello my gynecologist also suggested for me to get the vaccine I had 2 doses and 3rd in November. She said there is some evidence that it can help trigger the inmune system. I am also taking AHCC to help clear the HPV and vitamins . I had my Lletz in May for CIN3 and hoping my 6 months check will go well.I had a 3 months check that went ok with no sign of cell changes!! so trying to do everything possible to clear the HPV as they will test for it at my next appointment. But the fact that you don’t have cell changes is fantastic!! Hopefully your body will just get rid of it without causing you any issues like it does for the great majority of women. Try not to stress as it can affect inmune system good luck stay positive.

Hi Bristolcat

I can offer a different pespective.

I can understand (as opposed to empathise because I’ve never known my HPV status) how persistent HPV can cause a lot of anxiety as it may lead one to imagine the worst case scenario of a cancer diagnosis. In fact the statistics show that you are extremely unlikely to get cervical cancer - especially invasive cancer requiring significant and often life changing treatment: there are only just over 3000 cases of invasive cc a year in the UK out of 20+ million women.

Something that is in reality worse then knowing one is HPV positive is the ignorant bliss that comes with not knowing one has HPV which might lead to complacency about getting smear tests. This was my experience; I’d always had normal smear tests up to the age of 50y and sadly decided I didn’t need to get screened anymore. BIG mistake: I was diagnosed with stage 2A cc at the age of 60y (see my back story). If at any point I’d known I was HPV positive I’m pretty sure I’d have carried on getting screened.

Testing positive for HPV offers advantages in that the NHS will monitor you more closely and also the patient is more motivated to carry on getting screened.

I’d trade the ‘cloud’ of persistent HPV with sleep walking into a cancer diagnosis any day.

x

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That’s a really helpful perspective, thank you.

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Hey Charlotte,
Welcome to the community and thanks for sharing. That sense of limbo is awful isn’t it but as Jazza mentions below, it’s best to be in this position than head blissfully unaware into a cc diagnosis. I guess there is nothing much that we can do than watch and wait.
That’s interesting that you mention getting the vaccine to boost your immune system. I will ask about that too, I haven’t heard about it before. Would also like to know if this works.

AHCC is a compound made from Shitake mushrooms. You can buy it from any good online health food store. There’s some evidence that taking it helps your body get rid of HPV. I have started taking 3g per day and I get my partner to take some too. It’s got to be worth a shot right? It will be interesting to see if it helps clear my HPV by the time I get to my next smear in August 2022.

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Hi Jazza,
That really does help put it all into perspective thank you for sharing this with me x

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I’m 57 and have had abnormal smears since I was 25 and yearly smears. I had a colposcopy back in 1999 but no further treatment needed. I had a normal smear in 2017 & 2018 so put on a 3 year review. Recently had that smear and positive for HPV again and had a colposcopy last Friday as high grade (moderate) changes. Now awaiting the results and having sleepless nights. I definitely need to try and kick HPVs butt as I’ve had a guys full of it after 32 years.

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Hey Sally,
Thanks for sharing this. Isn’t it weird how HPV can become dormant like that - like it teases us. Similar happened to me too and I thought I’d seen the last of it in 2018 but it reared its head again with my latest smear result too…luckily no treatment needed but it’s such a Heracles sword to live under. Sorry to hear about the high grade moderate changes. Will you let me know how you get on with those results. Crossing everything that it all comes back ok and sending gentle hugs x

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I’ll defo keep you posted honey, hoping the result is sooner rather than later but, as they say, no news is good news lol x

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Where would you purchase AHCC 3G please

I had hysterectomy in 2014 for fibroids. was told did not need paps anymore. then switched providers had atypical two years in a row and now lsil, sent to cancer gyno and he did colposcy and biopsy and came back vain 2. he wants to do laser on it. put me to sleep and laser it and then retest in a year. I want to wait I do not want to laser it off. I want to try and take vitamins and any other recommendations to make it go away.

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I got mine off Amazon. Just type in AHCC into their search engine and you’ll get lots of options.

I am using a vaginal gel called papilocare. Amazon has it.
Some studies suggest it helps with the abnormalities this studies are quite far ahead and looks very promising. I am also taking papiloxyl. Is a AHCC many different types so just choose one .this I take 3 pills before breakfast . No idea if that will work but I just try. Good luck :+1:t3:

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I keep hearing about papilocare but am dubious about the results and how expensive it is. Have you had any good results from it?

Hello I had my Lletz done in May
CIN3 indicator of reocurrence. CGIN also higher rate of reocurrence.
. HPV 16 the worst strain with the highest rate of reocurrence no clear margins also an indicator of reocurrence. I am over 40 again indicator of reocurrence .
After looking at this I decided need it to try and raise my luck to avoid reocurrence as it looked like I had all the lottery numbers to get it back . I started taking AHCC about 2 weeks after Lletz. And the papilocare after 2 and a half months.
My 3 months check was clear. I just had colposcopy for 6 months and all clear. I am still waiting on results for HPV probably will have this in about 2 weeks :crossed_fingers: let’s see what happens. No idea if any of this helps or is just that I had a great surgeon that did a fantastic job .

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Yes and also forgot to say I started having cold sores in 2019 after more than 20 years not getting any at all. Is that just a coincidence :thinking: as before 2019 all my smears were clear as soon as I started having cold sores my smear was positive. So probably my body had some inmune system crash from 2019.

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