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Original poster

Colposcopy referral after 3 high risk hpv samples

148 replies

Ilovepugs2017 · 20/02/2023 11:26

Hi,
I’ve just received a letter about my recent smear saying I’ll be referred for a colposcopy procedure.
I have been having yearly smears for the past 3 years due to hpv being found in my sample but no abnormal cells.
Each year it’s shown up as the same thing,
new letter says high risk hpv found in my sample but that cells are normal.
Has anyone had anything similar and what was the outcome? I’m a natural worrier so just looking for some advice from others who have been through similar.

OP posts:
EpicDay · 27/02/2023 13:46

Have debated about contributing my story but hope it’s helpful. I too had not been able to clear my HPV for many many years. In July 2020 after a three year break I had a further smear/colposcopy and a small cervical cancerous tumour was found. It was removed and I subsequently had a hysterectomy and ovary removal. The point of telling you this is NOT to scare you (it is very very unlikely that you have cervical cancer) but rather to say keep embracing the yearly smears - we are unbelievably lucky to have access to this kind of preventative medicine in the UK. Also to say, cervical cancer is overwhelmingly caught early and dealt with. I am totally fine post my cancer diagnosis so am living proof that the system works. I very much hope that none of this becomes relevant to you but wanted to offer the story of a positive outcome if it does.

Original poster
Ilovepugs2017 · 27/02/2023 13:49

VanCleefArpels · 27/02/2023 12:40

I’ve been through this

2021 - smear reveals HPV+ but normal cells, come back in 12 months

2022- smear reveals abnormal cells, colposcopy, biopsy and LLETZ required. I found LLETZ quite traumatic due to reaction to local anaesthetic

2023 - will go for my “proof of cure” appointment in April, 6 mths after LLETZ

I’ve already decided that if there are still abnormalities I’m going to ask for hysterectomy- I’m already menopausal, grown up children so this makes sense to me

So sorry to hear you’ve been through this & that the lletz procedure was traumatic for you. Did the local anaesthetic not work properly? I can imagine it would be very painful!

Great that they managed to give you treatment though and I’ll keep my fingers crossed for you that you get the all clear at your next appointment.

Tbh, I’m 35 so not at the age of menopause yet but I can see where your coming from with a hysterectomy. I’d have one if I needed to, I have my 3 babies now

OP posts:
Original poster
Ilovepugs2017 · 27/02/2023 13:55

EpicDay · 27/02/2023 13:46

Have debated about contributing my story but hope it’s helpful. I too had not been able to clear my HPV for many many years. In July 2020 after a three year break I had a further smear/colposcopy and a small cervical cancerous tumour was found. It was removed and I subsequently had a hysterectomy and ovary removal. The point of telling you this is NOT to scare you (it is very very unlikely that you have cervical cancer) but rather to say keep embracing the yearly smears - we are unbelievably lucky to have access to this kind of preventative medicine in the UK. Also to say, cervical cancer is overwhelmingly caught early and dealt with. I am totally fine post my cancer diagnosis so am living proof that the system works. I very much hope that none of this becomes relevant to you but wanted to offer the story of a positive outcome if it does.

Hi, thank you so much for telling me your story. I do appreciate it. Did your smear in 2020 show up as abnormal cells or was it just the HPV? I think when I first had a result of HPV I was told not to worry too much as the body usually clears it within 2 years by itself so it was a bit of a shock to have that letter to say high risk hpv 3 years in a row since they changed the testing procedure.

So sorry to hear that you ended up with a cancer diagnosis but great that they managed to catch it early enough to give you appropriate treatment. Also glad to hear your ok now.

I do agree that we are very lucky in the UK, I am very thankful that they’re keeping a close eye with the yearly smears and subsequent colposcopy. Although naturally am rather scared too!

OP posts:
Dinersaur · 27/02/2023 14:53

fluffylampbear · 27/02/2023 13:37

@Dinersaur can I ask which brand of AHCC you are taking and where you got it? I was reading that some are not necessarily legit and it was seeming hard to ascertain which one/s were or not! They are also expensive.

Yeah can't really say ever with supplements can you. I checked reviews etc. I'm taking Time Health.

I'm also taking zinc, and turkeytail mushroom too.

Dinersaur · 27/02/2023 15:02

fluffylampbear · 27/02/2023 12:29

Hi OP... there's a good subreddit about HPV which has lots of tips on how to clear it if you have it. www.reddit.com/r/HPV/

I have had trouble clearing it too, but have found on there that taking zinc supplements daily for a month or two is apparently really helpful for it and in trials cleared something crazy like 85% of people's HPV.

You need to do anything you can to stimulate your immune system. There are also other tips such as AHCC extract (mushroom pills), again proven to stimulate immune vs HPV, beta glucans etc.

Do a bit of research. I am thinking of trying the zinc for a month or two to see where I get to, but be careful you can't take it too long. I'm also taking a mushroom complex and beta glucans as well as vitamin C and doing a couple of short water fasts which I believe stimulate the immune response (Do this carefully if you are going to with lots of research and also electrolyte supplementation).

Also if you are under 45 you can get the Gardasil vaccine which I believe in a lot of people stimulates the immune system against even pre-existing HPV infections in a lot of cases even though it's not promoted to do this a lot of people find it helps. You may have to pay privately though for this.

Why can't you take zinc for long? I'm taking it as i have pcos and it's recommended

fluffylampbear · 27/02/2023 15:19

@Dinersaur maybe it means in higher doses. I was reading it can affect copper levels or something. And that it can affect sense of smell negatively if you take too much! Worth doing a bit of research to double check.

fluffylampbear · 27/02/2023 15:23

@Ilovepugs2017 I doubt you'd have had the vaccine, I don't think it was introduced when you were a child but check with the surgery. I think you have to pay privately - around £500 or so for three treatments in total. Boots do it I believe. I've not had it yet but considering it. The subreddit I linked to has a few posts if you search for it stating that it's helped people.

bobisbored · 27/02/2023 15:31

I am the same position OP. I have had 3 consecutive HPV positive smears. I was told that I'd be referred for colposcopy if the third was positive. This time it also showed mild dyskaryosis. I haven't had the appointment through yet and I'm trying not to worry but I am a bit. I'm 45, not menopausal yet. No symptoms of anything untoward.
How are you feeling?

AFrivolousDigression · 27/02/2023 15:48

I had HPV and NO CIN changes. Because I had had 3 smears and still had HPV indicating that my immune system hadn't cleared it I was offered LEETZ and hastily (because I had been frightened by the words 'high risk HPV' agreed to it. I had a letter to sign that told me some practical things I could and couldn't do in the next few weeks (no baths), and what I might expect in terms of discharge from the vaginal canal.
What I had not been expecting was that a year later, well after the discharge and the cervix had repaired, to not be able to have such satisfying orgasms.
Basically what they don't tell you is that the cervix has loads of nerve cells and that these are linked to orgasm - well they were for me and I know that a Facebook was set up for lots of other women who had similar issues and a petition went to some M.Ps about it. So even though the clitoris is still intact, the whole area is involved in orgasm (especially really deep ones that go on and on and lead to a sort of lovely 'light' in the brain and lead to a total release. Burning the cervix damaged my orgasm and sent me plunging into a deep depression. It also lead to a rage towards the medical profession because they didn't inform me of all of this.
After the LEETZ hadn't even got rid of the HPV I decided to take Vitamin D, Zinc, ensure I had sufficient sleep, gentle exercise and generally improved my nutrition. The HPV had cleared and I was told I didn't have to come back for 3 years.
In terms of my orgasms, I do still orgasm, but now my body 'shudders' and it feels like a muscular release happens but without the final satisfying pressing on my cervix which would result in the 'final phase' of orgasm for me with bright lights sometimes and a sense of deeper release.
I'm telling you this because I wish someone had told me /reminded me of the big part the cervix plays in sex.
I wish the medical profession would take women's sexual health more seriously.
If it was a man, and they told him that they were going to burn the end of his glans off I think a few more people would be talking about it and asking questions about 'when is the right time to do this'? How long should one wait for the HPV to clear? Why aren't people giving women the whole picture.
For me this felt like genital mutilation - just of an 'inside' part of my genitals.

AFrivolousDigression · 27/02/2023 15:56

And another horrible part of it was that when I said this to the women in the clinic they 'told me' that it's the 'clitoris' that is involved in orgasm (as if all my lived experience of having thousands of satisfying orgasms and understanding my body counted for nothing, because 'they' (i.e. these people who at this time represented the 'medical profession', believed the clitoris alone was involved in orgasm, despite my lived experience. Maybe for her, she had only ever had clitoral orgasms, but for me, I had sensation in both clitoris, cervix, vaginal canal, and whole body. Being told 'I must be mistaken' was horrific, and felt like I had not been believed.

EpicDay · 27/02/2023 19:17

@Ilovepugs2017 I had abnormal cells as well as HPV in 2020 - but had had a colposcopy twice previously, and a previous biopsy. I’d basically had HPV going back around 10 years. I didn’t know that there was anything that could be tried to get rid of HPV - so would have been interested in all the suggestions on this thread at the relevant time! Also to say, although I am very sorry to hear of the impact on the previous poster of her cervical surgery, I haven’t had similar problems and I understand that they are relatively rare. I was pretty anxious about similar problems arising - and did a lot of research about percentage risks etc. I agree that the medical profession are not good at balancing different kinds of risk - they are very solutions-based and automatically assume that you would want to eliminate all cancer risk and were surprised when I expressed how important my sexuality was to me (I’m 54 so I wonder whether the 30 year old surgeon thought I should be past all that!). Anyway in the end I saw a wonderful female, older, surgeon, who I was able to explore all this with and who helped me come to a decision that hysterectomy was the right thing for me. But as for the original tumour removal, I didn’t really have any choice so in that sense it was easy for me.

Original poster
Ilovepugs2017 · 27/02/2023 22:27

fluffylampbear · 27/02/2023 15:23

@Ilovepugs2017 I doubt you'd have had the vaccine, I don't think it was introduced when you were a child but check with the surgery. I think you have to pay privately - around £500 or so for three treatments in total. Boots do it I believe. I've not had it yet but considering it. The subreddit I linked to has a few posts if you search for it stating that it's helped people.

Ok perhaps I didn’t have it then and I will double check with the GP to confirm whether I did or not.
I will do a bit more research into the Reddit posts too

OP posts:
Original poster
Ilovepugs2017 · 27/02/2023 22:31

bobisbored · 27/02/2023 15:31

I am the same position OP. I have had 3 consecutive HPV positive smears. I was told that I'd be referred for colposcopy if the third was positive. This time it also showed mild dyskaryosis. I haven't had the appointment through yet and I'm trying not to worry but I am a bit. I'm 45, not menopausal yet. No symptoms of anything untoward.
How are you feeling?

Sorry to hear your in the same position and hope your appointment for colposcopy procedure comes through very soon for you, the waiting around for the next step is definitely the hardest bit isn’t it? Knowing there is an issue but not knowing whether it’s something that needs treating or not.
I’m ok but obviously quite anxious about the colposcopy, not the procedure itself so much but just the unknown of what they may or may not find I guess.
I haven’t had any odd symptoms that I’ve noticed such as bleeding in between periods or after intercourse so that’s reassuring in my mind.

OP posts:
Original poster
Ilovepugs2017 · 27/02/2023 22:35

AFrivolousDigression · 27/02/2023 15:48

I had HPV and NO CIN changes. Because I had had 3 smears and still had HPV indicating that my immune system hadn't cleared it I was offered LEETZ and hastily (because I had been frightened by the words 'high risk HPV' agreed to it. I had a letter to sign that told me some practical things I could and couldn't do in the next few weeks (no baths), and what I might expect in terms of discharge from the vaginal canal.
What I had not been expecting was that a year later, well after the discharge and the cervix had repaired, to not be able to have such satisfying orgasms.
Basically what they don't tell you is that the cervix has loads of nerve cells and that these are linked to orgasm - well they were for me and I know that a Facebook was set up for lots of other women who had similar issues and a petition went to some M.Ps about it. So even though the clitoris is still intact, the whole area is involved in orgasm (especially really deep ones that go on and on and lead to a sort of lovely 'light' in the brain and lead to a total release. Burning the cervix damaged my orgasm and sent me plunging into a deep depression. It also lead to a rage towards the medical profession because they didn't inform me of all of this.
After the LEETZ hadn't even got rid of the HPV I decided to take Vitamin D, Zinc, ensure I had sufficient sleep, gentle exercise and generally improved my nutrition. The HPV had cleared and I was told I didn't have to come back for 3 years.
In terms of my orgasms, I do still orgasm, but now my body 'shudders' and it feels like a muscular release happens but without the final satisfying pressing on my cervix which would result in the 'final phase' of orgasm for me with bright lights sometimes and a sense of deeper release.
I'm telling you this because I wish someone had told me /reminded me of the big part the cervix plays in sex.
I wish the medical profession would take women's sexual health more seriously.
If it was a man, and they told him that they were going to burn the end of his glans off I think a few more people would be talking about it and asking questions about 'when is the right time to do this'? How long should one wait for the HPV to clear? Why aren't people giving women the whole picture.
For me this felt like genital mutilation - just of an 'inside' part of my genitals.

so sorry to hear that the procedure ended up causing issues for you post recovery. It’s a shame you didn’t have more time to properly consider it when you were aware of the long term risks.
I guess from a medical standpoint they were just trying to do what’s best to prevent cervical cancer and perhaps didn’t consider the implications it would have on other areas of your life. That’s not good though. You should have had the time to make an informed choice really. I’ll definitely speak to them about these risks should I need any treatment following my colposcopy. Thank you for making me aware this risk, it’s definitely something to consider.

OP posts:
Original poster
Ilovepugs2017 · 27/02/2023 22:39

EpicDay · 27/02/2023 19:17

@Ilovepugs2017 I had abnormal cells as well as HPV in 2020 - but had had a colposcopy twice previously, and a previous biopsy. I’d basically had HPV going back around 10 years. I didn’t know that there was anything that could be tried to get rid of HPV - so would have been interested in all the suggestions on this thread at the relevant time! Also to say, although I am very sorry to hear of the impact on the previous poster of her cervical surgery, I haven’t had similar problems and I understand that they are relatively rare. I was pretty anxious about similar problems arising - and did a lot of research about percentage risks etc. I agree that the medical profession are not good at balancing different kinds of risk - they are very solutions-based and automatically assume that you would want to eliminate all cancer risk and were surprised when I expressed how important my sexuality was to me (I’m 54 so I wonder whether the 30 year old surgeon thought I should be past all that!). Anyway in the end I saw a wonderful female, older, surgeon, who I was able to explore all this with and who helped me come to a decision that hysterectomy was the right thing for me. But as for the original tumour removal, I didn’t really have any choice so in that sense it was easy for me.

Were the abnormal cells detected via smear or only when you went for a colposcopy? Sorry for all the questions …

Yes it’s terrible what happened to the previous poster, that’s a huge risk and whilst rare I can imagine it would have a devastating impact on someone’s life.

sorry to hear that the original surgeon you had wasn’t great but good that you managed to get one who understood you more!

OP posts:
Dinersaur · 27/02/2023 23:44

Ilovepugs2017 · 27/02/2023 22:39

Were the abnormal cells detected via smear or only when you went for a colposcopy? Sorry for all the questions …

Yes it’s terrible what happened to the previous poster, that’s a huge risk and whilst rare I can imagine it would have a devastating impact on someone’s life.

sorry to hear that the original surgeon you had wasn’t great but good that you managed to get one who understood you more!

Show quote history

You sound super anxious. It'll all be okay. I know it's tempting to read and read but it will rarely make you feel better.

Original poster
Ilovepugs2017 · 28/02/2023 08:55

Dinersaur · 27/02/2023 23:44

You sound super anxious. It'll all be okay. I know it's tempting to read and read but it will rarely make you feel better.

Show quote history

Your so right I need to rationalise and realise that CC is actually quite rare

OP posts:
Dinersaur · 28/02/2023 09:03

Ilovepugs2017 · 28/02/2023 08:55

Your so right I need to rationalise and realise that CC is actually quite rare

Show quote history

I do the same as you. It's a safety behaviour. I have to know everything and create some certainty, i need statistics. But, invariably the people posting online are generally not thosr who had a run of the mill nothing to write home about experience, you often get the extremes, and in our quest to feel better we come across horror story after horror story and feel so so much worse.

EpicDay · 28/02/2023 13:27

@Ilovepugs2017 happy for you to DM me if you would like to discuss further at some point. I have such a long history of all this that without digging out all my notes I can’t quite remember the sequence! But pretty sure the abnormal cells were there from the smear. I agree with PP that people only tend to post if they’ve had unusual experiences - as in my case turning out to have cervical cancer - which is why I always hesitate to post in case it makes it worse for people who will almost certainly be fine!

Eranzer · 28/02/2023 13:48

AFrivolousDigression · 27/02/2023 15:48

I had HPV and NO CIN changes. Because I had had 3 smears and still had HPV indicating that my immune system hadn't cleared it I was offered LEETZ and hastily (because I had been frightened by the words 'high risk HPV' agreed to it. I had a letter to sign that told me some practical things I could and couldn't do in the next few weeks (no baths), and what I might expect in terms of discharge from the vaginal canal.
What I had not been expecting was that a year later, well after the discharge and the cervix had repaired, to not be able to have such satisfying orgasms.
Basically what they don't tell you is that the cervix has loads of nerve cells and that these are linked to orgasm - well they were for me and I know that a Facebook was set up for lots of other women who had similar issues and a petition went to some M.Ps about it. So even though the clitoris is still intact, the whole area is involved in orgasm (especially really deep ones that go on and on and lead to a sort of lovely 'light' in the brain and lead to a total release. Burning the cervix damaged my orgasm and sent me plunging into a deep depression. It also lead to a rage towards the medical profession because they didn't inform me of all of this.
After the LEETZ hadn't even got rid of the HPV I decided to take Vitamin D, Zinc, ensure I had sufficient sleep, gentle exercise and generally improved my nutrition. The HPV had cleared and I was told I didn't have to come back for 3 years.
In terms of my orgasms, I do still orgasm, but now my body 'shudders' and it feels like a muscular release happens but without the final satisfying pressing on my cervix which would result in the 'final phase' of orgasm for me with bright lights sometimes and a sense of deeper release.
I'm telling you this because I wish someone had told me /reminded me of the big part the cervix plays in sex.
I wish the medical profession would take women's sexual health more seriously.
If it was a man, and they told him that they were going to burn the end of his glans off I think a few more people would be talking about it and asking questions about 'when is the right time to do this'? How long should one wait for the HPV to clear? Why aren't people giving women the whole picture.
For me this felt like genital mutilation - just of an 'inside' part of my genitals.

Same here with orgasms after my LLETZ. I can feel the muscles contracting but there's no sensation of pleasure with it.

I wish I'd done more research before my procedure, I hadn't given it a second thought at the time.

GHxx · 28/02/2023 18:14

@Ilovepugs2017 yes I had a smear before being pregnant and didn’t get the result for a while, knew it wasn’t going to be great news then got the dreaded letter 🙄 when I went she said it was high grade. I got the letter through within about two days of the original letter and my appointment was three days later or something so I did have a fair idea it was obviously being treated as urgent. I then felt a bit weird though at the fact it was so urgent but I will need to wait 8 months or something to have it treated. I’m considering asking if it’s possible that they do it at the time of my elective c-section then I won’t know anything about it 🙈 not sure if they will though

Original poster
Ilovepugs2017 · 03/04/2023 09:49

Just on my way to the colposcopy appointment - bit nervous but will update here when I’ve had it done. Thank you all for your supportive messages

OP posts:
GHxx · 03/04/2023 15:34

@Ilovepugs2017 hope it went okay. Let me know what you had done in the end up

Original poster
Ilovepugs2017 · 03/04/2023 15:46

GHxx · 03/04/2023 15:34

@Ilovepugs2017 hope it went okay. Let me know what you had done in the end up

Hiya. I think I went in with too much of a positive head if that makes sense? Kind of rationalised and convinced myself it would be normal because my smears had just picked up HPV and no abnormal cells.
however when they done the colposcopy she did notice some changes and has also done a punch biopsy. So that came as a bit of a shock really.
They said the results can take 8-12 weeks and that I’ll have a letter explaining what happens next when the results are back

OP posts:
Dollmeup · 03/04/2023 15:56

Same here. I had repeat positive screens then a colposcopy with a punch biopsy I think. Showed some changes so I had a lletz procedure. I didn't find it any more painful than a smear really, it just took longer.

Smear after that came back clear which was a relief!

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