Handhold and experience please - high-risk cervical HPV question

[NiftyBlueRobin]

Hi everyone,

I haven't posted here before but I'm familiar with the site and cannot find any info about this online so am here to hopefully get people's insights from their own experience. Posting in AIBU for traffic as I doubt this would get much notice on another board.

I've done a private home cervical HPV testing kit and just got the results back telling me I have high-risk HPV detected, but not strain 16 or 18. I'm in my late twenties and have never had a cervical screening before due to vaginismus. I only became aware of the existence of home HPV tests recently and ordered one immediately.

I'm trying to get a GP appointment as I know I now need to have a proper cervical screening and they'll want to take their own sample for testing (which I'm dreading), but I haven't managed to get an appointment yet.

I've done a lot of research and know that the chances of it actually turning into cancer is statistically low, however, this is because most women's bodies clear the virus spontaneously within two years. The reason I'm so concerned is that I'm worried this won't happen for me and I'll have persistent high-risk HPV because I had verrucas for over a decade and have had warts for over two decades, so my body doesn't have a good track record of clearing HPV spontaneously. I've tried to find information online about whether your body struggling to clear low-risk HPV strains like the ones that cause warts is an indication that your body will also struggle to clear high-risk cervical strains, but can't find any information whatsoever.

So, if anyone reading this has a similar history of their body being crap at clearing warts/verrucas and has also had a diagnosis of high-risk cervical HPV, please could you tell me what happened in your case? How long did your cervical HPV take to clear? Did you end up with persistent HPV? Did you have complications?

Thanks in advance.

My body is horrific at clearing verrucas (had my current ones for over five years) yet when I had a smear with HPV, it cleared itself by the following year.

So anecdata of one suggests no correlation.

Thanks @VanyaV, this has already made me feel a bit better. I've been scaring myself by reading Reddit threads from women who have had it in their cervix for 10+ years and have had to have multiple surgeries that have made them infertile.

I'm also terrified about telling my boyfriend and have no idea how he'll react, but that's a whole other matter.

Warts and verrucas are notoriously difficult to clear for everyone. Don't connect dots that you don't need to x

Thanks Didimum, I know and I'm trying not to spiral/convince myself of the worst, but it's frustrating that I can't find any information whatsoever online about this. I'll ask my GP when I get an appointment but I'm not hopeful a GP will have extensive knowledge about unusual HPV questions :(

I don't see why you need to know the information? As someone who also has health anxiety, this feels like reassurance seeking to me, which only feeds the anxiety.

Whether or not it's connected, you're going to get checked and will be monitored appropriately. Whether or not you have verrucas and warts that clear or don't clear will not be a factor.

I think it's largely because I'm concerned about my fertility, as if you have persistent HPV it increases the risk of you needing surgeries to remove pre-cancerous growths and I'm at an age where I am now seriously considering family planning so it feels like it's struck at a very unfortunate time I suppose.

I hear what you're saying about health anxiety but I don't think I have that. Since I got the results a few days ago I've been quite calm and haven't jumped to convincing myself I have cancer or pre-cancer, and I'm doing a good job of not worrying too much until I have a talk with my GP and get formal results from them so I know where I stand.

It did seem like a sensible question to ask though since warts/verrucas are also caused by HPV (though I know different strains) and are the only experience of HPV that I have to draw on until now. I hear what you're saying though in that even if I get an answer to this question, there's nothing extra they can do so maybe there's no point in knowing. I'm just trying to understand my situation as best I can, and I was hoping that if other women have had the same experience as me but had positive stories about their cervical HPV clearing in a normal time-frame then I could worry a bit less about this

I think an elements of health anxiety here is evidenced both by the worry over warts and verrucas and also jumping ahead to infertility in the event of cell changes – that's all really speculative, and you will need cell changes confirmed first before going down any of those roads – especially it occurring multiple times.

I agree with this poster. I don’t see what you need to know really. You’ve taken the appropriate action which is great. How fast someone’s verrucas and warts clear is irrelevant to your personal situation. Some will never have had warts or verrucas but still get abnormal cells and others will have active verrucas and warts and have no abnormal cells.

Regardless of the reasons, lots of women have abnormal cells when they have a smear. I have several friends who have had to have them removed at varying degrees of severity. One had the most severe form and had to have a lot of her uterus lining removed (several times a year at the worst point) and they all went on to have children including her. That’s what smears are for to pick up on these things.

@ChessBess and @Didimum am I coming across as crazy making a connection between persistent warts/verrucas and persistent cervical HPV? I'm happy to be told yes I am, but I genuinely thought this would be something that would naturally cross someone in my position's mind since it's all caused by the same virus so how your body reacts to one strain may indicate how it will react to another? If everyone reading this thinks I'm crazy for making that potential connection though then I'll definitely reflect!

But if anyone else has experience of being in my position and clearing the cervical HPV in a normal time-frame please do still let me know because just reading that VanyaV was in a similar position to me and got an all-clear a year later really did help me feel better.

Jumping to fears about fertility is silly at this stage, I do know that. It's difficult not to have some level of anxiousness when you get news like this though.

I think it's a bit of a reach, yes – though it's really good to hear you're remaining calm. As you point out, most people with high risk HPV clear the infection and are completely fine.

Verrucas and warts are very hard for the immune system to clear as they are located on the epidermis, which doesn't have a very strong immune response, so I don't think it's useful to compare immune responses to the two.

I know it's hard but try not to worry. Following a cervical smear test I was told I had HPV and CIN 2 abnormal cells which I had removed, this was about 13 years ago? I went on to have 2 DC after this and there were no adverse effects or risk factors with my pregnancies.
Most women will have HPV at some point, it's just a fact and not something to be embarrassed about. If you're not able to get a GP appointment consider giving your nearest sexual health clinic a call, I went once to have the coil fitted and they did a smear test at the same time so they should be able to do it!
PS please try to get attend all your smear test appointments, noone likes having them done and if the nurse is aware you've got/had vaginismus they'll know what to do.
Good luck!

I thought that 80% of sexually active people would have HPV at some point. It's so common that you really shouldn't be panicking.

High risk HPV was found during my smear test last year, together with borderline cell changes. I was terrified. Was referred for a colposcopy at the hospital, they did a thorough test with cameras and vinegar and declared all was fine and dandy and offered me a photo! Told to just have my next smear as normal...in 5 years time. No idea if it's gone or not (I'll probably do a test to find out at some point) but they weren't worried and said it's relatively common. I think a smear test and follow up is the way to go.

You’re not coming accross as crazy, because most of us do it at some point. We Google info then we’re lead down rabbit holes and end up making us feel worse. It’s not nice panicking and I’m the world’s worst and it’s bludy awful so I can empathise.

Objectively though, I’m trying to give you a different perspective in that it’s actually very common and treatable

@NiftyBlueRobin If it helps, I'm 66 and have had cervical HPV for years that hasn't helpfully gone away.

High-risk HPV is what can cause the changes in cervical cells, so I also have CIN1/2 changes to my cervical cells, and had three treatments to help fix them (DLE/LLETZ). I've never had any warts/verrucas, persistent or otherwise.

I can't comment on fertility issues (no kids) but I have to say my treatment over the years in Oxfordshire NHS gynae has been brilliant. I don't have vaginismus but I have a 'tricky' (and stennosed) cervix and invariably get sent on after a (sometimes failed attempt) smear for a colposcopy for them to get a better look at my cervix.

IMO these are preferable to smears. No scraping, a gynae doctor, AND a nurse to hold my hand. Now I'm over 64 and still a problem to them, they've just decided to go straight to an annual colposcopy. I'd ask for this, assuming vaginismus isn't treatable. Otherwise, tranquilisers!

Sympathy and best of luck.

Thanks @Didimum, I didn't know that about the epidermis and it's good to know

Thanks @TealScroller, I'm trying the GP again tomorrow but if I can't get an appointment this week I'll look into going to a sexual health clinic instead. And It's reassuring to hear it didn't affect your ability to have children, I definitely need to stop reading Reddit thread horror stories

Yes 80% of humans will contract HPV in their lifetime but a minority will contract a high-risk strain. I think the statistic is that every 1 in 12 women who have a smear test will come back positive for high-risk HPV

Thanks @CrystalSingerFan and I'm sorry you're also dealing with the stress of high-risk HPV. Even outside of this discussion, I'm surprised you've never once had a verruca or wart! I thought that was a human right of passage

I do prefer the sound of a larcoscopy to the smear test but my NHS trust and GP have both been really unaccommodating of my vaginismus to date, so I doubt they'd be willing to let me bypass the smear but I'll mention it as an option going forwards nonetheless. Tranquilisers are also a good shout and I've never considered them or been offered them; I was planning on bringing a flask of whiskey to my smear test for some liquid courage, haha.

Thanks everyone, your messages have helped. I may update the thread for another handhold if I get bad news following my smear/sample results if that's ok for further advice

You can't compare the response to verruca types and the cervical and/or genital types - the type of cell is different (think about how tough the sole of your foot is versus the rich blood supply to your cervix). Your anti viral white blood cells can get to the cervix more effectively than to the surface of your foot. Based off your individual genetic make up, some strains of HPV are easier to clear than others (and the verruca strains are different to the high risk cervical strains, as you say). It's a bit apples and oranges.

Out of interest, did the test come back saying which strain you did have, if not 16/18?

@NiftyBlueRobin "I was planning on bringing a flask of whiskey to my smear test for some liquid courage"

Aaah, that reminds me of a discussion I once had with my dentist. (I'm a huge coward with any kind of pain.) She said no, medics/dentists don't consider that acceptable. (I personally would have chosen Southern Comfort.) Mild pain, ask your GP for tranquilisers. Big stuff, pay money for conscious sedation. Brilliant. Albeit expensive.

Another thing is to ASK for a couple of tranquilisers - one for the night before, one for the morning of the appointment. If vaginismus is untreatable AND they don't care, they're not going to offer, presumably.

Another suggestion is that I was told to ask for the most obstetrically experienced nurse in my GP practice for my smear appointment. Try that too? (I had a useless newbie recently who asked if she might call upon a more experienced colleague after a few failed attempts (unavailable) and we had to reschedule. And then the inevitable colposcopy.)

Had the same worries! I took a while to clear mine - 4/5 years maybe (who knows how long I had it before found too!) had annual colposcopy and it eventually went. And I had no problem getting pregnant- now have a 9 month old! Try not to worry it’s quite common and you’ll be monitored

Thank you @OtterMummy2024 that explanation makes a lot of sense, I've taken everyone's advice and have stopped convincing myself that I'm destined to have a persistent infection.

Unfortunately have now switched to panicking about this potentially having been in me since I lost my virginity and so being advanced to cancer, even though as I said earlier, I was not worrying about that at this stage. What is it about night time that makes it so much easier to worry about things? But honestly, I'm trying to keep calm as obviously spiralling won't help anything. I might look into a private smear to see if I can get results any quicker.

The test tested for strains 16 and 18 respectively, and then all the other strains linked to cancer are tested as one panel. So my results just said 'positive for High-Risk HPV Other'.