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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Cervical Cancer with no HPV?

41 replies

Cloodybunt · 07/08/2023 13:00

So, I have cruised through a few threads on here because I am in a bit of a tailspin, which will probably turn out to be a total drama about nothing, but....

I am a long time post menopause, which was completely unremarkable other than that it was exceptionally early..... at this stage I think I am more male than female if my chin hairs are anything to go by.

I have had one partner my whole life (I feel like a weirdo saying it but hey, I locked the tracker beams on and stuck with that one special penis). He also has had one partner so we are both weirdos together.

Because of that I have really not bothered with smear tests, which I am now thinking might have been really stupid. I reluctantly had one many years ago as a part of a well woman thing and they confirmed I was HPV negative, so I assumed it was really not an issue I needed to concern myself with.

Fast forward to today and strange things are happening. I thought I had thrush, but two cycles of over the counter treatment didn't work, and it wasn't really itchy just immense insidy discomfort and a lot of watery discharge, which also reeks a bit. I'm having to wear pads all the time or I leave puddles. Then I tried the over counter treatment for bacterial vaginosis, that didn't work and the pessaries felt like I had shoved razor blades up my floofer. Then the GP prescribed metronidazole, that has not worked either.

In addition, doing the deed has become extremely painful. This is not a dryness issue.

In addition, last year I had a raft of tests because my urine always has blood in it, but a scoot in my bladder revealed all was fine and no one had any idea where the blood was coming from. They concluded by saying bladder healthy, no need to worry. So I didn't. This also might have been stupid.

So I'm googling because Dr Google has all the answers, but based on the above collection of symptoms, and the possibility that the blood in the urine was not from the bladder after all.... all roads point to some kind of cervical cancer risk.

I have accepted that maybe I am a bit of a tit, and booked a smear for a few weeks - it was the soonest I could get...

BUT, am I in a tailspin over nothing? If I have never caught HPV, then surely I cant get cervical cancer, and this is simply some horrible fanny rot associated with being a dried up old hag?

If anyone can give me some pointers, or reassurance that would be fab. Of course, I just checked my critical illness insurance is still valid so I am veering to worst case scenario which I know is idiotic and dramatic......

OP posts:
Cleo29 · 07/08/2023 16:11

DustyLee123 · 07/08/2023 13:05

And not all cervical cancers are caused by HPV which is why you do need smears

I thought the same - not all cervical cancers are caused by HPV but i thought that in the UK our smear tests are now in two parts and if you are hpv negative it doesn’t move forward.

OP - watery discharge in menopause with bleeding can indicate an issue with the uterus so an ultrasound might be a good idea

Cloodybunt · 07/08/2023 16:14

Onceuponaheartache · 07/08/2023 15:59

Seriously how do people of menopausal age get there without fully understanding why these tests are offered??!!

HPV is not the single cause if cervical cancer. HPV is also not solely transmitted via sex so the fact you and your partner are the only sexual partners either of you has had us irrelevant.

My best friend was 35, had the hpv vaccine, confirmed as not a carrier and died of cervical cancer last year.

Please stop being niaeve. I am gobsmacked your gp hasn't ousted harder for smear tests in the past.

With luck it is nothing but honestly, I'm sorry to be blunt but not having smears is really stupid.

Thanks. You are right. It is stupid. Not to drip feed, and I didn't want to heap everything into the first post, but the reluctance to have people up the floof for testing is more to do with psychological trauma from multiple miscarriages and some very difficult births with a subsequent prolapse. So I do find anything with legs akimbo extremely distressing. I realise I'm an idiot, but I was just asking a very specific question about HPV, not about screening, albeit as said above, I've put my big girl pants on ready to take them off again and be screened and I've booked the appt to discuss the symptomatic elements with the GP.

OP posts:
RoadSignFool · 07/08/2023 16:15

Onceuponaheartache · 07/08/2023 15:59

Seriously how do people of menopausal age get there without fully understanding why these tests are offered??!!

HPV is not the single cause if cervical cancer. HPV is also not solely transmitted via sex so the fact you and your partner are the only sexual partners either of you has had us irrelevant.

My best friend was 35, had the hpv vaccine, confirmed as not a carrier and died of cervical cancer last year.

Please stop being niaeve. I am gobsmacked your gp hasn't ousted harder for smear tests in the past.

With luck it is nothing but honestly, I'm sorry to be blunt but not having smears is really stupid.

Your friend’s cervical cells would not have been screened for cancer at a smear test under today’s protocols though, as an HPV negative result indicates no further testing required. She was very unlucky.

mindutopia · 07/08/2023 16:26

I work in sexual health and your symptoms as you have described them would immediately suggest the need for a full sexual health screening. Honestly, if I were you, I would book an appt with a sexual health clinic. STI testing should be done to rule out any possibility of an STI. I know you say you and your dh have never had any other sexual partners, but it is a sensible thing to do and it means that you can put that to bed, because it's the first thing that any doctor should ask you about given your symptoms. Obviously, given the situation, you would hope it's not an STI, but it will rule it out as a possible cause.

But secondly, if you go for an in-person appt, which you should do as you're symptomatic, then it means the doctor can actually look at your cervix. They did this for me recently when I was having some symptoms of an infection. This is probably the most helpful thing that could be done given you think it's very likely you're HPV negative anyway. This will mean you actually get eyes on you.

I would do this alongside pursuing a gynae referral from your GP too.

Cloodybunt · 07/08/2023 16:40

mindutopia · 07/08/2023 16:26

I work in sexual health and your symptoms as you have described them would immediately suggest the need for a full sexual health screening. Honestly, if I were you, I would book an appt with a sexual health clinic. STI testing should be done to rule out any possibility of an STI. I know you say you and your dh have never had any other sexual partners, but it is a sensible thing to do and it means that you can put that to bed, because it's the first thing that any doctor should ask you about given your symptoms. Obviously, given the situation, you would hope it's not an STI, but it will rule it out as a possible cause.

But secondly, if you go for an in-person appt, which you should do as you're symptomatic, then it means the doctor can actually look at your cervix. They did this for me recently when I was having some symptoms of an infection. This is probably the most helpful thing that could be done given you think it's very likely you're HPV negative anyway. This will mean you actually get eyes on you.

I would do this alongside pursuing a gynae referral from your GP too.

Thank you, this is all very helpful advice.

OP posts:
time4anothername · 07/08/2023 16:43

Jo's cervical cancer charity are great for any questions https://www.jostrust.org.uk/get-support/helpline
Once having a negative test for HPV does not mean that you definitely did not have it in your body. It can be dormant, see Jo's Cancer Trust page https://www.jostrust.org.uk/information/hpv/faqs "Usually, your immune system gets rid of HPV within 2 years. But in some cases, HPV may stay in your body for longer.
Sometimes HPV does not cause any harm and will not be picked up by a test. We call this ‘dormant’ or ‘clinically insignificant’ HPV.
Occasionally, dormant HPV can become active again and may start to cause cervical cell changes. HPV that has become active would be detected with a test.
We don’t know exactly why this happens yet, but it may be because of changes in your immune system over time. It is important to remember that cervical screening (previously called a ‘smear test’) can help find HPV and any cell changes early."

Have you had your kidneys screened too to see if they are the culprit for the blood in the urine?

HPV FAQs

If you have questions or concerns about the Human Papillomavirus (HPV), read answers to frequently asked questions for information and support.

https://www.jostrust.org.uk/information/hpv/faqs

GulfCoastBeachGirl · 07/08/2023 16:53

and a lot of watery discharge, which also reeks a bit. I'm having to wear pads all the time

Post menopause this is very concerning and warrants a trip to the GP as soon as possible. A pelvic ultrasound to measure endometrial lining is usually the first test; lining should be very thin post meno (and not on hrt).

I don't want to be an alarmist and definitely not trying to scare you, but sometimes you shouldn't just "wait and see".

Northseacrone · 07/08/2023 17:00

The wiffy watery discharge could be from a polyp in your uterus. I had the same for years, ended up having to wear high-absorbency period pants every day plus a pad if I was going to be out of the house for a while, but no GP was interested in what could be causing it (it was just a sign of age that I had to put up with). Had to go private for a hysterectomy in the end, but now my floofer has never been happier without all that gunk irritating it every day. Lots of delightfully horrible things can go wrong up there even for a hermit nun! Have a word with whoever is doing your smear test, see if you can get a referral to a gynaecologist.

KatieB55 · 07/08/2023 17:05

dementedpixie · 07/08/2023 13:19

It's not a smear you'd get if you were having symptoms though. You'd be sent for other tests as a smear is just a screening test

This is really important. Go back to your GP!

dogsweetdog · 07/08/2023 17:25

DustyLee123 · 07/08/2023 13:05

And not all cervical cancers are caused by HPV which is why you do need smears

But they just test for HPV when you go for a smear these days don't they? Which means if you have any other kind it won't be picked up anyway.

fuckmyuteruslining · 07/08/2023 17:25

Totally agree with other posters. Could be cervix but your uterus is also a likely culprit and also you can have more than one issue at once. So age/hormones could impact on the painful sex maybe but there's something gynae need to look at causing the discharge.
Personally I've had a transvaginal ultrasound and hysteroscopy recentky. Both so, so much better than I expected. Very low discomfort and such lovely, lovely staff. Get them to lift the bonnet and do a mot on your undercarriage op. You deserve not to be unwell and miserable.

Gerrataere · 07/08/2023 17:29

dogsweetdog · 07/08/2023 17:25

But they just test for HPV when you go for a smear these days don't they? Which means if you have any other kind it won't be picked up anyway.

This is the thing about smears. They’re pushed so hard (and obviously a great deterrent of HPV becoming cancer). However smears do not catch all cervical cancers, it is not a complete preventative measure. You can never miss a smear and still have cervical cancer.

superplumb · 07/08/2023 18:31

Went for my smear to be told if no hpv they don't check further.
What's worrying is around 11 years ago I was treated for pre cancerous cells. My smear then tested fit cancer and not hpv was clear. I'll went to a gyno for other symptoms and he spotted it and got treated then and there...I asked what would jave happened if I waited until my next smear and he told me I'd likely have cancer. So now my recent hpv test is clear it still worries me..

Gerrataere · 07/08/2023 18:36

superplumb · 07/08/2023 18:31

Went for my smear to be told if no hpv they don't check further.
What's worrying is around 11 years ago I was treated for pre cancerous cells. My smear then tested fit cancer and not hpv was clear. I'll went to a gyno for other symptoms and he spotted it and got treated then and there...I asked what would jave happened if I waited until my next smear and he told me I'd likely have cancer. So now my recent hpv test is clear it still worries me..

Can I ask what other symptoms you had if not too intrusive? Like I said I tested positive last year, had another one this year that tested negative. But over the last few months my periods have been getting closer together, to the point where my cycle is two weeks. I’ve had to restart taking the pill because I’m constantly either pmsing or bleeding..

Curseofthenation · 07/08/2023 18:39

According to Cancer Research UK, 99.8% of cervical cancers are caused by HPV. Your chances of contracting HPV 16 or HPV 18 (the main variants associated with cervical cancer) are low if you and your partner have only had any form of sexual contact with one another. It is mainly spread through sexual contact. This is the reason young girls are given the HPV vaccine before they become sexually active. That said, I believe around 40 - 50% of newborns born vaginally to HPV positive mothers are born with the virus. They usually clear it out of their system by 2 years old though. I have no idea if it lays dormant in any of these individuals, there was no data on this in the study I read.

It does still mean that the very unfortunate women that have a non-HPV variant of cervical cancer slip through the net.

I'm mainly saying all of this to point out that the cervical screening is still likely to catch the vast majority of cervical cancers.

UWOT1 · 07/08/2023 18:48

I'm HVP negative but had Cin3 at 18 years oold. If left undetected it would have eventually turned into cervical cancer. I think you need to book in to a smear ASAP. However. I wouldn't just to cancer as the reason for your symptoms. Have you considered booking s full sexual health screening at the family planning clinic and a smear at the same time? I'm mot saving your DH is cheating but that I personally would covet all my bases. A friend of mine thought she was dying. In reality her husband had given her a STI.

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