Sharing good results and my story

Hi I feel I need to post something on this page as I’ve turned to this forum many times reading your post for strength. I just wanted to post some positive news and a little bit about my story. It is a story of two halves.
Many years ago 30 years or more I had abnormal cells before HPV tests were made public to us. I had CIN 1 borderline CIN 2 and received loop diathermia and I was given the all clear, it had worked and I was put on yearly smears for 10 years having no further issues.
Im 62 yrs now.
I have to admit my relationship broke down in my late fifties and I did have a new partner. Last year at the age of 61 I had what was to be my last smear, however I was horrified when it came back HPV positive thankfully with no cell changes. I was told that I would have to have another smear in a year and continue yearly until the HPV went, or after 3 years a colposcopy. I was worried sick.
I came to the forum and looked for advice. I read all the things about suppliments but as I’m a nurse and have some medical knowledge I was worried about taking suppliments purchased from the Internet, being unsure of where they came from and what they truly contain. As not all are passed/recomended by our NHS. Also many were very exspensive without really knowing if they would work.
I made the decision rightly or wrongly to try and tackle this in my own way. I did decide to take an immune booster an over the counter daily gummie and thats all.
I do take thyroxine as I have an underactive thyroid. I also take vitamin D one daily. I do eat very healthy lots of fruit and Veg. I dont smoke but do like a glass of wine.
However I got into my head that it was no point whatever I did, if I was passing the infection back-and-forth with my partner. I assumed if I had it, then so would he. I figured if my immune system cleared it and then I was intimate I would get it back again. So rightly or wrongly I took the decision to say to my partner that I wanted to abstain from sex for a year till I had my smear to see if it would go… I’m not advocating this for everyone it was my choice.
I did sadly affect my relationship with my partner and we broke up. However I continued by myself and I have just had my smear back yesterday and it is HPV negative. It appears my body has cleared the virus.
For this I am truly grateful but I find myself in the situation whereby I won’t be having any more smears now as I’ve been told I’m at the age where they stop. What if I meet a new partner? do I say that I’ll never be intimate with anyone else? Medical science has been good moving forward and increasing our knowledge around HPV. But on the other hand the knowledge has affected me and so many of our lives… and now I have doubts as to whether I’ll be able to lead a normal life if I meet another partner. The purpose of being well is to live a happy life but knowing about HPV is frightening and leaves me wondering if I will always be on my own now.
Sorry for the long message I just wanted to share. X

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If they say you to stop doesnt mean that you have to stop having pap smears. Once the patiente requires about a smear they should do it no matter whats the age. How does it work there?

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P.S
Your post gave me so much hope, l am on bed and l was crying so bad, once l read your post l felt better.
Before 30 years did they tell you which strain of hpv did you have? Since than it never reactivated again, only once you had a new partner it came hpv positive?

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I am not a nurse like you but I’ve read your story and I do have ancillary health qualifications.
I take certain supplements.
I have been in and out of pap smears and colposcopies for most of my life and I’m now 66. I have not had an intimate partner for some years. My HPV16 (there are several forms which can lead to cancer) flared up in 2021 once again but this time it was under extreme sustained stress load.
After colposcopy, cone biopsy I had radical hysterectomy and lymphadenectomy 7 weeks ago. The staged 1B2 tumour was removed and pathology found it was just 1B1 nbecause it had all been removed in the cone biopsy after all. While there were pre-cancerous cells found on the cervix (external to the cone biopsy), there were no cell changes found in the lymph nodes. I seem to be free of cancer.
I have scientific training (post graduate chemistry) and I understand from the academic papers I have read on cervical cancer and its treatment that HPV is common across our species and can live elsewhere such as the skin, not just genitalia. Yes, partners do harbour it and spread it. Our immune system normally fights it off from causing pre-cancerous changes or developing beyond that to cancer.
I understand that our partners do not develop pre-cancerous changes, so one assumes that reinfection should be managed under normal circumstances.
I welcome the discussion if you’d like to keep in touch. We could PM at this forum.

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If i had any symptoms then I could probably request a smear, but in the UK they stop at age 64 yrs. Maybe could pay private but not sure.

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No I never found out what strain. They dont tell you that. I did ask. I think I was reinfected but will never know. I get confused in everyone taking suppliments to clear it, if it just lays dormant and can come back at anytime as they say.
Personally I prefer to believe its gone now but I do know its very easily picked up again …most people have it. I feel they are still learning about it and also feel that by telling everyone it creates alot of uneccassary worry. Im not sure the benefit of knowing outweighs the worry. I have worried for a whole year.
I think they should just promote the importance of smears. Only inform if they have abnormal cells.

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Hi Susan,
I too tested positive for hpv last year at age 61, I worried for a year and if I’m honest mostly avoided sex with my husband which did put a strain on our relationship. I did take one course of AHCC but not at the optimum dose and not for as long as recommended, it upset my stomach and I think affected my sleep too. Anyway I’ve just had the results of my one year retest and I too was negative. Great relief.
I’ve lost several close female relatives to cancer and I’m still kind of worried. My result letter said I would be recalled in 5 years, I’d be 67 then so not sure if I will be. I hope you stay well and happy x

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Hi, I just wanted to write to say Susan’s post resonated with me as I’m in my mid sixties and am due for a repeat smear next week after my last one a year ago showed HPV. I too had CIN3 over 30 years ago and had regular smears after. I have been married for 40 years and to find I have HPV again has caused a lot of stress in my marriage with doubts of fidelity, the same as 30 years ago, and has left me wanting to avoid sex altogether but now reluctantly trying to use condoms, which at my post menopausal age with the difficulties of dryness etc., isn’t very successful, even though I’m using an oestrogen cream. It’s such a worry and has caused me so much stress that I think I might be better off single, but of course that doesn’t work financially at my age. It’s such a shame that men can’t be tested for this virus, it always seems to be women who end up paying the price, even if you’ve been faithful for over 40 years! I have had the worst year of stress with losing my Mum and house sale going on, I haven’t taken any supplements just a multivit, so I just have to keep my fingers crossed that I’ve cleared the virus, but if I have I don’t know if I’m ever going to feel the same about having unprotected sex again, and if I haven’t well that’s going to be another lot of worry. I’m so glad I found Jostrust, it’s such a friendly, supportive place to air your thoughts, especially as it’s difficult to talk to friends or family about such personal matters. Good luck everyone xx

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Thankyou for your post its comforting to find somone my age that tested positive for HPV. Im so glad you have the all clear now. This new test system worries lots of people. We have to remember too…it scares us terribly about cancer yet HPV isnt cancer …and neither is abnormal cells… it is something that only MAY lead to cancer. Yet receiving that letter scares the happiness out of our life as we worry what COULD happen. You worried for a year too im sorry.
Enjoy your life now smile and stay well too. X

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Oh 722 what lovely post. Your situation sounds very much like mine. I do hope your body has cleared the virus …whatever that means! “as they do say it lays dormant” and then that is another worry for us, not sure all this information helps. My advice is stay positive and remember you are doing all that you can and worrying wont change the outcome. HPV and abnormal cells are not cancer at this stage, you are keeping an eye on things by getting your smears. Please let us know how you get on I truly hope all goes well. Ive heard this happens to many our age and then simply settles down. X
P.s im so sorry for the difficult time you have had, particularly the loss of your Mum stay strong. Sending good wishes of strength to you. X

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Hi Susan this is a great post to share glad your on the mend I too abnormal smears for years hpv positive I had abdominal hysterectomy earlier this year results came back ok I still have the fear the hpv looms I too have a partner and haven’t had intercourse for a v long time we both take care and I got good fruit veg became healthier and took the mushroom extract v expensive but read a lot about it I think pray this virus is hopefully gone haven’t had my check but should get this soon I feel a lot better mentally and physically just getting more back to normal I truly believe if we become more aware of our bodies and live healthier lifestyle we can rid of this awful hpv. Fingers xd healthy is the way to go BW Emma aged 49 x

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Its so nice to read these positive posts. I have just been diagnosed with HPV no abnormal cells.
I can see the reason why they tell you about the HPV status but i cant help but feel it is causing so much worry and pain for people and their relationships. If my smear had fallen a year later i may never have known but at the same time i am grateful that i am being monitored.
I have decided to keep this to myself for now, i have been married for 17 years and faithful and as men can not be tested i am not sure it is worth my husbands stress as well as mine.

Concentrating on clearing this with vitamins exersive and staying healthy.
I am 48 x

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Hi Susan. Lots to say in respose to your original post. I know I can’t fight off HPV (veruccae and now warts all my life) but the health pros all say, ‘Don’t worry, it’s a different strain!!!’. Had my last smear five years ago at 50, had to escape an abusive marriage etc etc, so when my smear request came a couple of months ago, had no idea it was a five year gap. Now they test for HPV and yes, you guessed it, positive and high grade changes. I’m waiting to see how ‘bad’ it is, a month on.

Firstly, you might find this post helpful: https://forum.jostrust.org.uk/t/hpv-positive-long-timers-looking-for-solidarity-advice-space-to-share-worries/53718/30. If it doesn’t work as a link, copy and paste - it’s another thread on here. As they say, Superdrug do sell an online HPV test.

I am so angry. HPV is an STD yet no sexual health clinic tests for it. Chances are, I’ve got an STD for the rest of my life. I thought when I escaped my marriage, I had a second chance, but how am I supposed to have another partner? CC is the only one that is routinely tested yet high risk HPV causes penile, vaginal, anal and oral cancer (the later of which is hugely on the rise) I’m on a 2 week cancer wait as I’ve had a grumbling sore throat for months and I see changes in my throat, so worst case scenario is cervical and pharangyeal cancer - mostly likely given to me by my X - couldn’t make it up, could you? My next battle is to get the vaccine to try and help boost my immune system. I never seem to be ill, but HPV is the one thing my immune system doens’t seem to be able to cope with. I may have to pay privately, but I think it’s worth trying.
Good luck, and rest easy - you can do your own smears!

Hi Susan
Just wanted to post my positive update. After a year of intense worry and stress I’ve just had my repeat smear result which shows I have cleared the HPV so I’m now negative. I didn’t take any extra vitamins just my usual multivitamin, but didn’t have unprotected sex. The letter says as I’m 65 I won’t be recalled for further smears as they don’t think ladies of my age are likely to get cc, which I really don’t understand. I’m sure lots of ladies post menopause are sexually active and unless you are 100% sure you have a faithful partner then surely you must still be at risk. I think it would be wise to pay for private smears maybe every couple of years until you both decide not to have intercourse!
I’ve now decided I’m never having unprotected sex, and if that affects my marriage then so be it, I want to protect my health and mental health, although of course a marriage break up at any stage affects both of these. Good luck to everyone on here xx

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Hi,

I really recommend having Pap Smear and HPV test every six months and colposcopy too! I’m 52 and my HPV was clear, but 4 months latter it was back and not going away. Please get check up all the time!

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