HPV positive. Please help, I'm so scared

Cervical screening results
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Hi

Sorry I’m new to this so I hope this is OK.

My smear test was due in Feb 2020, I booked it and it was cancelled because of covid. By the time my surgery contacted me to reschedule (in september 2020) I was pregnant with my first baby and therefore couldn’t have it. They just advised for me to have it after having my baby.

I eventually had my smear in September 2021…my baby was born in April and I was told to wait 3 months. By the time they could fit me in it had to be early September. All my previous smears have been fine so I didn’t worry.

Unfortunately my results have destroyed me and my relationship with my husband. I’m also embarrassed to say that lately, I’ve been feeling suicidal because of it too.

I tested positive for HPV but no abnormal cells. I feel so dirty and ashamed. I’ve only ever been with my husband for any sexual contact and we have been together for 13 years, married for 5. I can’t get over the thoughts that he has cheated. I’ve read online that in ‘extreme’ cases it can lay dormant in your system…but for 13 years? Really? And if it has, doesn’t that make me more likely to get cancer if I’ve had it all these years?

It can only have come from him but when? All I can think of is who was she and did he cheat whilst I was pregnant? I’ve lost all sex drive and everytime he comes near me or hints at sex, my mind instantly goes to HPV and I panic. Obviously this is incredibly frustrating for him because…well he’s a man!

I’m terrified of what the future holds. I have to have another test in Sept 2022 which that alone terrifies me, but what if I have to have any treatment? During my pregnancy I had an awful experience as a result of surgical malpractice which has left me with PTSD…so bad to the point I didn’t want to give birth and am still haunted by the procedure I had to the point that panic attacks are a regular occurence . If I have to have treatment there is just no way I will cope or be able to have it done. I dont even know how I will go for another smear as last time I had to be given Lorazepam. I feel nobody will understand or make it bearable for me. I’m so embarrassed and feel like they’ll just judge me.

What does it mean if my cervix has been chopped about and I decided a few years down the line that I wanted to have another baby - will it be premature or have problems? Can I even get pregnant or give birth again? What if I end up with cancer whilst I’m pregnant? Is HPV something that me and my husband will keep passing to each other, which will surely make it more likely for cancer to develop?

I just have so many worries and fears and my GP has been really unhelpful about it all. I’ve been to see him twice and the last time he was really flippant and almost annoyed at me for coming back about it. I left feeling humiliated.

We can’t even move house now because the life insurance premiums will be too expensive because I’ll have to declare it.

Also, I’ve stopped breast-feeding my baby, stopped bathing with him, stopped all skin-to-skin contact, stopped kissing him, I wear gloves to bathe him and change his nappy and I bleach the bath and shower after I’ve used it. I’m so scared I’ll pass it on to him because surely the virus ends up all over your skin and on surfaces you’ve touched? I feel like leaving him and my husband, which I know is an awful thing to say but I just cant bear the thought of making my baby sick or him growing up and getting to know me and then I end up dying and leaving him motherless and putting him through watching his mum die. I keep thinking I’d better leave now before he really remembers me or knows who I am, which is breaking my heart.

Sorry for long essay. I just really don’t know what to do. It’s all a bit too much and has gone on for a while now and doesn’t seem to be getting any better or easier. I haven’t told anyone other than my husband because I’m so embarrassed and I know people will just think I have an STD and must sleep about.

Xx

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Hello
Please stop beating yourself up about this. 80% of people contract HPV which means that pretty much everyone has it. Please do not throw away your marriage over this. Please check the opening times for Jo’s helpline. They will help you to understand more about HPV and help to support you emotionally. Please call them tomorrow. If you prefer you can e-mail them. You could also e-mail the Ask the expert service. You seriously are not alone. A lot of people develop anxiety around their disgnosis but once you understand more about this you will probably feel a lot better. It’s important for you to seek emotional support about this. It sounds as though yout GP wasn’t very helpful - could you see the practice nurse? Seriously Jo’s helpline are brilliant - do not delay in cslling them. I hope this helps.
A x

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HPV really can, and does, lay dormant in the system. If you’ve not long had a baby and put your body through that stress, it could have brought the virus out. Don’t forget, warts on your fingers and verucas on your feet are also HPV. Most people get these as children. HPV is a part of most of our lives, it’s just that now they make us more aware of it. But sadly there clearly isn’t enough education on it as you say, you feel dirty and assume people will think you sleep about. Or your partner has cheated.

When was your last smear? HPV has only been reported in smears for the last few years.

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Hello , I’m hoping some others can also respond to your post tonight because they can probably help put your mind at some ease.
(Edited…I must be a slow typer as there’s already 3 others)

However just in case I am putting something. I have probably had HPV for more like 20 years to my estimated knowledge based on relationship history. Like yourself this led me to questioning if having it for a long time means things could be worker sooner but I think the idea is that these things take many years to progress and HPV can be dormant for a long time. HPV is really common and I know where you are coming from initially felt awful about having HPV. I cried on my friends at a party who then said they also had had it and a friend of theirs too. I think it’s unlikely to pass to your baby while changing (others may be able to offer more on that) plus also there’s the HPV vaccines that luckily my daughter has had (she is now 14) which I am so glad about as that wasn’t around when I was her age and I like to think that there’s a great opportunity ahead for more advancements in screening and care . I think you also said no cell changes which is really positive. I have borderline results and waiting for colposcopy and I am 39 this year and they only started testing for HPV at cervical screening a few years ago about 2018 or later depending where you live. There’s a lot of information on here and people are supporting each other. I am a bit obsessed though with checking on new posts and rereading things because I have a diagnosis of anxiety disorder and health anxiety is a big part of that for me.

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Can I ask, where did you hear that you have to declare HPV for life insurance? I’ve never heard that before.

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Hi Emmal87

I saw it on Google. It’s classed as a pre-existing condition which is subject to medical underwriting and usually results in either not being covered for it, or increased premiums due to there being more risk or critical illness or death x

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Hi HEH0

Thanks for your message. How have you coped with knowing you have HPV for so long? I can’t cope with waiting a year to find out whats going on with it. I feel like I’ll be looking over my shoulder for the rest of my life waiting for cancer to get me if the HPV hasn’t cleared by my next smear.
I’ve never heard of anyone with this, which is maybe why it was such a shock. It’s nice to know that others are in the same boat though.
Yes, I’m the same these days. I think maybe I’ve got health anxiety too because I can’t stop googling either x

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Hi emmal87

My last smear was September 2021. My previous one was in 2017 I think.

Do you think pregnancy could have caused it? It was a very stressful time. But I wonder if that means it will come back if I get pregnant again in the future.

I agree. There definitely isn’t enough education about it! X

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Also, yes I had the vaccine too. I’m 30 this year and was in the first roll out of it when I was in high school. I feel like a guinea pig now. It obviously didn’t work for me though unfortunately x

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Hi 551

Thanks for your message.

Yes, maybe I’ll speak to one of the experts on here then. I feel unable to go back to my doctors now or see someone in person as I felt so humiliated and ashamed after last time. Plus I’m scared if they want to examine me. I just cant go through that…I know how ridiculous that sounds but I just can’t deal with it.

X

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Hi Roses92

Stress can definitely bring out HPV. Your smear test in 2017 wouldn’t have reported whether you are HPV positive or not, as they only looked at the cells for tests before 2018 (that’s assuming you’re in the UK?). It could very well be that you’ve been HPV positive for a long time and you wouldn’t have known about it until your most recent smear.

Most of us here on this forum (and there are a lot of us!) have had HPV in our systems that just doesn’t clear, so we’ve had colposcopies, treatments etc. It’s sooooo common! I’ve had HPV positive smears since they started testing for it, so had a colposcopy in December, and they did discover some abnormalities which I’m having treated next week. Which is absolutely fine! It’s not cancer, and it won’t become cancer. And hopefully after treatment, the HPV will clear as the abnormal cells will have been removed.

Try to not worry about this. It’s unfortunate, but it is what it is. Enjoy having your beautiful baby, breastfeed if you still want to, as you will not pass HPV this way! Enjoy having time with your husband, as chances are, you’ve probably just had HPV all this time and it hasn’t cleared, only now it’s been brought to your attention due to the change in how smears are done and reported.

In regards to the insurance thing, that really is news to me. I did “google” it, which I didn’t find much at all. I wouldn’t have thought HPV would be reported because it’s not cervical cancer. As I stated, warts (albeit not high risk) are HPV and you wouldn’t report those. A lot of what I found on google seemed to be American or Australian sites, even when typing UK. It’s an odd one, and an unfair one if that’s the case, as men don’t get tested for it, so it would penalise women for having something that has only a very small chance of causing cancer. Especially now they’ve changed the way they test smears and HPV gets dealt with a lot better, for example, my HPV positive, no abnormal cells results for the past three years that meant I had a colposcopy just to check. And as said, they did find abnormal CIN2 which is being treated next week. I wonder, has anyone on this site found that HPV positive diagnosis has actually increased their insurance premiums?

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I’m worried that they send me on my way for a year that I will not cope with the same thoughts and continue to feel like something bad is going to happen to me between the appointments. Daft really I suppose I would rather have a treatment than just be sent away with low grade in hope that it will go away as I don’t think it will disappear as I am a complete stresshead and I read that it’s harder to get rid of HPV when near 40. I’m finding the wait between letter on 17th December 21 and colposcopy 26th Jan 22 (now a 1 week to go) difficult but to be honest I’m more accepting of it all and want to get it out the way. I’m back on citalopram for anxiety but that’s not just down to this it’s due to a very acrimonious divorce and court case. I’m still getting the side effects of having my Mirena coil fitted from early December. The coil hurt when it went in this time which didn’t hurt the last 3 I had in or out. This worries me also because it might not even be the coil causing my problems although I like to think it is what is giving irregular spotting etc. I have asked the doctors for blood tests too as I want to rule out other problems as I’m so very tired.
I think I will be so glad to have been & whatever the outcome is next week that will be will be and what it is is what it is and either way I can’t control the outcome and I am at no fault. I do wish I had not been 6 months late for my last cervical screening. Although who knows it’s all about timing. Maybe this would not have been picked up 6 months ago in which case I would not be in this position of worrying now. Maybe it is a blessing in disguise that I went late and get this over with sooner. I told a friend who admitted to me she has never been for a smear test but she has decided she is now booking.

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Hi Roses

I just wanted to chime in and say that I had the vaccines too (I’m 27) but have been positive for HPV at my last 3 smears, since I started having them. The nurse did tell me that the vaccinations mean the only strains we can contract are the least risky ones, which made me feel a lot better. She also explained that although you pass it through sexual contact, HPV isn’t actually considered to be an STI, which made discussing it with my husband a lot easier. I know those pieces of information really helped me to process the positive results, so I just wanted to share them with you too.

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I was under the impression that the HPV they screen for is high risk HPV only which can cause cell changes, so I’m hoping you are correct about the vaccination protection as that may mean I don’t definitely have high risk HPV.
I will ask that question at my appointment and try and remember to reply on here on how things go for me.

(Edited ) Just found this on another thread about types…
https://forum.jostrust.org.uk/t/what-type-of-hpv/50607/13

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I actually asked the Colposcopist last
month about what strains they test for and she said they don’t actually test what strain you have, just whether you have HPV or not.

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Hi lovely,
Firstly I’m so sorry you have been made to feel humiliated by your GP and that you weren’t given enough information about hpv, I also am hpv positive and have been going on my own journey since September last year. I have been frightened more times than I can think of and terrified of what happens next?. I got all my answers and more from the facts from jostrust, so much information about every step along the way. Not to mention the help from peoples stories and people on this forum. You have done the right thing in joining this forum and asking for help because you are surrounded by women in the same boat having the same worries as you. The best thing I did and would recommend anyone who is having a smear test to come to this page and read. It really puts your mind at ease and helps when you have those awful anxiety driven moments. I really hope your ok and that you reach out to the help line because I really believe it will answer every question you have posted on here and more :yellow_heart:

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I’m sorry that you have so many emotions going on, everything must feel so overwhelming. I just wanted to offer a suggestion - instead of speaking to your GP about your results, I wonder whether you might consider speaking to one of your practice nurses? Your practice nurse is probably the person who did your smear, and will be far more up to date with cervical screening, HPV and cervical screening follow up. GP’s tend not to be as involved in cervical screening, whereas practice nurses are, and will be far more understanding of your concerns.

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Sorry you’re struggling with it. Your gynaecologist should have been able to answer all your questions. However if you have no cell changes that’s really good news.
For those saying HPV has only been checked for since 2018, it’s actually been a lot longer than that. My first HPV positive result was 8 years ago with cin3, then my next smear was fine, and my latest smear was HPV+ with cin1 changes, my gyno said they now test for more strains than they used to which is why it now seems more common. It can lay dominant, it shouldn’t pass back and forth between you and your partner, and your immune system should just get rid of it on its own.
I’ve had the lletz 3 times as they missed a bit the first time, I spoke to her about having children, she said that would put in a stitch at the time which should help lessen the risk of miscarriage or premature labour and that I would be heavily monitored due to the 3 time lletz.
I really hope you get the help and support you need, don’t be afraid to ask for it.

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That is really useful information, thank you. Especially about the pregnancy precautions. Do they also test for HPV in pregnancies as a routine check? It’s been so long I can’t remember as mine are teenagers now.

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Hi Emmal87

Thanks for the reassurance.

I really do hope I haven’t had it all this time as that means there’s more chance of needing treatment at some point, doesn’t it?

Yes I am in the UK. I didn’t even realise they had started testing differently. I don’t get why they tell you about it when there is nothing they can do. All them telling me has done is destroyed my life.

Can I ask how you found the colposcopy and what treatment you are having, and what the treatment means for your future? (I.e if you decided to have a baby). The thought of even a colposcopy scares and embarrasses the hell out of me. Also, have they said why your smear didn’t pick up the cin2 cells? That’s worrying.

That’s a good point about the fact that men don’t get tested and so insurance companies would be penalising women if they took it into account. I might do a bit more research.

Xx