HPV NHS letter

Hello All
I hope this doesn’t seem too trivial, but I’m really freaking out. I’m 62 and I had what I was told would be my last cervical smear test a few weeks ago. To my shock, it came back as HPV positive with no abnormal cells. Come back and have a test in a year! My previous smear was 2019. My worry is that I suspect I caught it from a partner early 2020! So would’ve had it now for over three years. This is bad right? Jo’s trust looks amazing and seems to be the only resource of its kind. I did try to call the helpline, but I couldn’t get through.
Any advice from the forum would be greatly appreciated. Do I just sit back for a year and drive myself crazy? Is there anything I can do to help myself? Thanks, everyone x

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Hi Ali, I’m in my 60s too and got a shock when HPV and abnormal cells appeared on what was supposed to be my last routine smear earlier this year. The virus can be dormant for many years or decades and might only have become active again recently. It’s impossible to know for sure.

I was worried about the effectiveness of my immune system to clear the HPV and abnormal cells, so I asked my consultant to use TCA treatment. Research showed that it worked for some patients in the study. I haven’t been retested yet so don’t know if it’s worked for me (or, if the HPV has been suppressed, whether it was down to the TCA or supplements I’ve been taking) and I’ll post to the forum when I get my test results in a few months time. It might be worth considering. In the UK you’d have to go private for this, I don’t think it’s something that the NHS do, they have a ‘wait and see’ approach. I would have found that too stressful and wanted to do whatever I could to clear it asap.

Here’s a research paper: “short term efficacy of trichloroacetic acid in the treatment of cervical intraepithelial neoplasia”:
https://pubmed.ncbi.nlm.nih.gov/26942365/

Do post an update when you know more about your situation and progress. I will too
:heart:

Hi Rae
Thank you so much for responding to me. I too am worried about the efficacy of my immune system. I used to be pretty healthy until Covid struck. Now I seem to get chesty coughs and have lost my voice twice. Just getting over a spell of that now.
I don’t know anything about TCA treatment. I will look into it. I have an appointment with the gynaecology dept but not until July. Plenty of time to get very very anxious!
I’ve heard that folic acid is good for the immune system. Do you have any other supplements that you would recommend.
Please do post your progress and I will also update on mine. Good luck x

Hi Ali, it’s a worry because there’s no evidence for any one thing that seems to help the immune system, except for not smoking. A healthy diet, exercise, sleep and managing stress will help too. But it’s all a bit vague and probably varies a lot from person to person.

Search the forum for toolbox (or toolkit?) where people share what supplements they take. A lot of people seem to attribute their HPV being suppressed to AHCC but the versions available in the UK are different to the versions available in USA and Japan so who knows whether they are equally effective. I started a forum thread asking people to share their experiences of AHCC and which version and dose of AHCC they take but not many people have replied yet. Other people seem to use papilocare vaginal gel.

I’ve been been taking vitamin d for years, and since HPV diagnosis have added Mikei Japanese red reishi and Immiflex but they contain vitamin b and vit d and that may account for the supposed immune system benefits as much as or more than their other ingredients. I get both from Amazon. I also take a probiotic Probio 7 from Holland & Barrett. I’ll review all these (expensive) supplements after I have my next smear in a few months and may switch to AHCC if the smear still shows active HPV. Folate, also called folic acid, is vitamin B9, and is likely to be included in a vitamin B complex supplement which you can get more cheaply than some other supplements.

Yes, I’ll post when I get my next smear result in about 3 months’ time. It’s useful to share what might have helped get rid of active HPV but who knows, it could be that people’s immune systems would have cleared it anyway without all the supplements but some people’s HPV stays active for many years and we all want to do what we can to clear it as soon as we can.

Hi Ali 238, I am 63 and I have had record of HPV for many years now first it was an off handed remark from a new gyno on my way out of the office, which I kinda just blew it off. That was 18 years ago. All was good for about 12 years then it showed up again! I had a Pap smear that came back needing a colposcopy, then a LEEP then later after another follow up I needed a cone biopsy and now 3 months after that I am free of cells that look suspicious, but I still have HPV . It can clear up and then come back as mine has over the years. I too was worried but my gyno told me to keep coming back for follow ups until they come up clear then back to my yearly paps. But I will always have that in the back of my mind that I may have to have bits removed . I hope this helped , I really don’t worry over it too much anymore just get my paps and go from there. Blessings, beachbaby.

Hi Beachbaby

Thank you for responding to me. I’m so sorry you’ve had this going on for so long. I am beginning to realise what a common problem for women this is. I wonder why we don’t hear more about it in the media.
As it appears that there’s very little we can do about it I think you have the right approach. I am going to try to use it as an excuse to eat healthily drink less alcohol and generally take better care of myself. I will try not to worry myself sick and will get regular paps. Sadly it will mean the end of my sex life but they may naturally have happened at my age anyway. My partner died in February. I shall concentrate on my beautiful grandkids.

I hope yours stays away. Blessings to you too.

Ali_238

Ali_238, Hi again, I have heard about the vaccines for teens to prevent this, but it makes no sense why we would give it to a 9 year old child when the vax isn’t really proven. I don’t trust vaccines anyway, especially one they try to push on kids to prevent an adult virus. So many people have HPV and never know until later in life as I mentioned and I’m sure you’ve now heard, that it hides in your body and your body can clear it on its own or it can come back whenever. How this is possible I don’t know but that’s how it went for me I was clear for so many years and then it showed up again and it changed the cells in my cervix so hence the procedures that followed over time. I just keep getting checked and pray that it never causes cancer.I have been with my husband for 44 years and it floored me the first time I was told, I was angry, but it turns out that it can lie dormant for years, so… I cannot place blame on anyone but myself, but at first I did. But through prayer I have stopped doing that as we both had a past and we must deal with the present, whatever that is, be well God bless, beachbaby.

The HPV vaccine works best when it is given to young people before they become sexually active, in the UK it’s given aged 12-13 not age 9. Then it’s much less likely that they will catch the high risk strains of HPV when they do have sexual experiences, even before they have full sex. We all know how easily the HPV virus can be spread.

Cancer Research UK reports that “A 2021 study found that cervical cancer rates were reduced by almost 90% in women in their 20s in England, who were offered the vaccine aged 12-13.” https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/infections-eg-hpv-and-cancer/the-hpv-vaccine

How wonderful that young people have the opportunity to have a vaccine that will prevent the anxiety and need for medical treatment that many of us have experienced with our HPV positive status, abnormal cells and sometimes cervical cancer.

People forget how awful smallpox was and how incredible the vaccine was. Before the smallpox vaccination, smallpox was a highly deadly disease, causing significant mortality worldwide. Estimates indicate that in the 18th century alone, smallpox killed about 400,000 Europeans each year. Globally, the disease was responsible for 300-500 million deaths in the 20th century, prior to its eradication. During outbreaks, the disease could kill up to 30% of those infected, with higher mortality rates among children and those with weaker immune systems. The introduction of the smallpox vaccine in the late 18th century by Edward Jenner and subsequent global vaccination efforts dramatically reduced and eventually eradicated the disease by 1980. https://pubmed.ncbi.nlm.nih.gov/35143880/#:~:text=In%20the%2020th%20century%2C%20a,300%2D500%20million%20deaths%20worldwide.

I am grateful to scientists for developing vaccines such as that for HPV so that fewer women have to experience cervical cancer in the future.

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Hi,

I’m 56. The same thing happened to me. HPV on what was supposed to be my last 3 yearly smear in 2019. I’m still HPV positive and now have yearly cervical screening.

Since then I’ve had one biopsy that was CIN1 and another this year that was inadequate, so I’m having my first LLETZ in a few days time.

My nurse colposcopist knows me very well now! She told me there’s a large cohort of postmenopausal women who are testing HPV positive for the first time. It’s impossible to know when the virus was acquired as it can be dormant for years.

I have to say I’m not looking forward to the LLETZ, but hopefully it will provide some clarity regarding what’s going on in my cervix.

I’ll report back!

Hi Jude
It does feel a bit unfair. By the time we’ve gone through menopause I feel like our wombs have given us enough trouble! Whilst it’s good to know I’m not alone I do feel so sorry for all the women on here. The young ones too. We’re all scared.
Good luck I hope everything goes well for you. As you say it will be good to know what’s going on.

Hello, I have had HPV show up on PAPs since 2008…so 16 years. I am still at CIN 1. Have had had many colposcopies, a LEEP and many treatments with with escharotic treatments. It has never gone away, however I work at healthy eating and take many supplements suggested by Dr. Nick LeRoy in his bookPainting a Target on HPV. It is all I can do and I will keep doing all that and keep getting colonoscopies. My advice is to do all you can and keep getting checked with your doc. I also keep reading with the hopes that there will eventually be a cure.

In case you haven’t seen the posts today, Jo’s trust and the forum is closing immediately (23 May 2024).

I’m posting on other threads, so that as many forum users as possible are notified before the forum is taken down.

Check out the posts about the closure and pass this terrible news on in case anyone can help.

OMG! That’s terrible news.

Thanks so much for letting me know. I will look for the post.