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AIBU to be terrified? Diagnosed with HPV, abnormal cell growth

(69 Posts)
DancerAtHeart Thu 05-Jan-17 21:40:42

I'm terrified

I had my first smear test results sent to me today and it says I have abnormal cell growth.
I've been referred for a colposcopy and I have been told I definitely have an HPV infection.

What does this mean? I feel so angry right now. I've only had one sexual partner, my current boyfriend and I had my vaccinations before I ever got sexually active.

I know I could read up online but I'm too scared to make any sense of it

Please please please can someone who has been through this help me?

There is no treatment for HPV right? So I can't have sex until it clears? Should my partner get tested? Do I have cancer?

WineIsMyMainVice Thu 05-Jan-17 21:45:56

I'm sorry I can't help you with this as I have no experience. But I hope you get some help, advice and support soon. Hugs.

DancerAtHeart Thu 05-Jan-17 21:48:04

I don't want children

Can I have my female parts removed?! Better than cancer

Ibloodyhatethomasthetankengine Thu 05-Jan-17 21:49:15

Bless you, try not to worry OP.........HPV is a virus so, like the common cold, the virus can never be removed from your system, but it can, and generally does, just lie dormant.

I had the same results when I was 25 and had a colposcopy which was painless. Smear tests since have been normal. Almost ALL women contract At least ONE HPV strain in their lifetime so it is massively common.

No need for your partner to get tested, and having HPV does not mean cancer.

Big hugs, and try not to worry!

elvisola Thu 05-Jan-17 21:51:31

Oh no please don't worry, it's so common.

I had CIN 3 cell changes which is the pre cursor to cervical cancer but it was treated and hasn't returned 12 years later.

They will get you in for the colposcopy to determine how many cells they are and will take a biopsy to establish how far reaching the cells are. They will then burn them off with a laser.

You will have yearly smears for 5 years to make sure they don't come back. A colposcopy is like a smear really.

I went on to have 2 children and am now back onto 3 yearly smears.

Please don't worry. The HPV virus is like a cold sore virus, you can't do much about it and it's going to cause any other issues for you.

Jordana88 Thu 05-Jan-17 21:53:18

Hi Dancer.

You need not panic so much.

Nearly everyone will have Hpv in their lives despite the vaccinations.

Abnormal cells are measured in grades, they will invite you to a colposcopy to look more closely. It's no worse than a smear and they just dab on a dye and look via a scope to establish.

This does not mean you have or will get cancer. Depending on the grade they will treat it accordingly with either a freeze or caughterization which isn't painful.

Just have the colposcopy first and see what they say.

DancerAtHeart Thu 05-Jan-17 21:53:31

But could the colposcopy establish that I have cancer already sad

And what about my partner? He must have the strain too

If we have sex we will just keep passing it back and forth between us won't we?

Ibloodyhatethomasthetankengine Thu 05-Jan-17 21:56:10

No because it's a virus. You have it. You can't get rid of it. He can't 'give it to you again' because you already have it.

Try not to worry xx

Ineedhelpplease100 Thu 05-Jan-17 21:56:24

YANBU to be scared- it's totally normal and I'd be a hypocrite if I told you YABU.

I had an abnormal smear last year, and the sample tested positive for HPV.

I was sent an info leaflet that said about 80% of people will have HPV at some point. There was nothing in there about not being able to have sex.

Abnormal cells doesn't necessarily mean cancer. There are changes the cells can go through that MAY turn in to cancer if not dealt with.

I'm guessing you've been invited for a colposcopy? Basically a speculum will be inserted (similar to at smear) and the colposcopist will look through what's essentially a telescope type thing (that doesn't go inside you) at your cervix. They may swab the cervix with a solution that highlights abnormal cells. None of this was painful.

My abnormalities were graded the most severe of the pre-cancerous abnormalities and so was offered treatment there and then (but could have gone back at a later date if I wanted). I think the lowest grade changes aren't usually removed. For this, the speculum was changed and I was given a local anaesthetic in my cervix. This sounds worse than it was, but it's certainly not somewhere I ever imagined I'd be injected! The cells are removed by an electrified loop and the procedure didn't hurt at all. I had some mild period pains for a few days after and was a bit emotional but apart from that I was fine. The removed cells were sent off for lab work to make sure all dodgy cells had been removed and to confirm no cancer. I've got to go back for a check up in a few months.

I've spoken to so many friends who'd been for a colposcopy though and I'm the only person I know who's needed treatment though. Colonoscopies are more common than I'd realised and the majority have no further follow up required.

Hopefully this has helped but feel free to PM me if you want to know more.

Search for Jo's Trust online- they have a section of their forum dedicated to abnormal smear results and I found it really reassuring.

Ouriana Thu 05-Jan-17 21:56:28

Hi, I also had HPV, my results were CIN3, does it say what yours are?

The colposcopy is more uncomfortable than a smear but not by much. I then had a lletz, which is where they laser away the affected area of your cervix and a biopsy.

It wasnt pleasent but it isnt that bad. The first time I had the lletz I got picked up and then spent the day on the sofa with a hot water bottle, there is some dull cramps but it isnt too painful.

In my case the abnormal cells kept reoccuring so i had a few lletz treatments and several biopsies, but it never peogressed to cancer and after 3 years I have the all clear.

So please do not worry. It does not mean cancer. The treatment is not that bad, after the second I went straight back to work and you dont have to abstain from sex.

GahBuggerit Thu 05-Jan-17 21:59:09

you already have it op, as do most women so theres no passing it back

i had cin 3 and have had 2 colposcopies. the chair and stirrups are quite possibly the comfiest thing my arse has sat in

JaxingJump Thu 05-Jan-17 21:59:39

Don't worry OP. Most people have it. Did your smear say 'mild ....' can't remember the word, something like dikylo... It's very common. And most of the time disappears on its own. You'll just be asked to do regular smears.

Ibloodyhatethomasthetankengine Thu 05-Jan-17 22:00:53

Dysplasia x

Furo Thu 05-Jan-17 22:01:04

Hi, I've had the same result about 5 years ago. I was never vaccinated by then and remember how scary it is! The worst is the waiting and not knowing what it all means. In my case I had a cone biopsy (which is a minor operation with a laser, they cut cells off the cervix, and if they get all the abnormal cells it stays at that. I was in and out of hospital in a day and life was back to normal in a week.

There are different stages, Most times they find it so early that it's not cancer hence why they do the regular smear test. flowers good luck and ask your dr as much as you can.

I know it's difficult, but try not to google or worry too much it makes it worse, chances are it's not progressed. Not sure about the sex with your partner, I believe you should use a condom for the time being. While it doesn't affect him, he could pass the virus on or back to you I think.

GardenGeek Thu 05-Jan-17 22:04:08

Glad you posted Elvisola

I have been putting off my smear for a year as I knew it would come back abnormal as have HPV.

I was worried the treatment would weaken the cervix and increase chances of miscarriage and make it difficult to have children.

Now I see you had your two little ones, I am going to book tomorrow and see what happens grin

Thanks again.

Don't worry OP, HPVs only issue is dodgy smear results like this. No other issues.

Ibloodyhatethomasthetankengine Thu 05-Jan-17 22:05:05

Without wanting to sound crass, think of it a bit like having a cold in your foof...... What I mean by that is, we all carry strains of cold virus. We all then 'get' colds from time to time which is generally when we feel run down or tired etc. and our immunity drops a little and the cold virus we carry activates and we feel a bit crappy for a while. Then, sometimes, really REALLY rarely, someone will get a really really bad cold, end up with pneumonia and end up in hospital, or worse. But for almost everyone, the cold disappears as our body, or treatment we use to help suppress it, fights it off.

It's just a virus. Xx

frazzled3ds Thu 05-Jan-17 22:06:13

Dancer, I've been there, and have just been discharged from the colposcopy clinic after the best part of 10 years or so back and forth due to abnormal smears and carrying HPV. Easy to say, and less easy to do I know, but don't panic.

Whilst smear tests are far from a thrillingly enjoyable experience, they detect changes early on, and more often than not, these changes return to a normal state by themselves. If they don't, then the colposcopy clinic will be able to offer you appropriate treatment and regular follow up examinations to keep an eye on what's going on.

The clinic in my local hospital was staffed by lovely people, and they went out of their way to put my mind at rest and explain everything that was going on and why, and what the follow up would be and so on. I had one lot of treatment (called cold coagulation - slightly odd name as it doesn't involve cold) and have had biopsies taken more than once as well, but it really isn't a painful thing, slightly uncomfortable sometimes, but compared to giving birth, it's a walk in the park! Maybe I'm a bit weird but I found it all quite fascinating (my clinic had a tv sized screen hooked up the scope and I could see what they were looking at - this is optional, you can look away!)

HPV is a very common thing, and there are multiple strains of it, different variants responsible for different things. It is one of those things that can be dormant for years, appear on a test result one year and disappear again on the next one. There may be some chance that you pass it back and forth with your partner, but then you may not - his immune system may well knock it on the head, and in time yours will too.

Don't worry, the good news is they've picked up on something being a bit out of kilter and will monitor it and treat it accordingly if necessary.

Sending a hug, I know it's a scary time when you get a letter like that, but honestly, try not to worry!

elvisola Thu 05-Jan-17 22:07:16

Gardengeek in all honestly yes I had 2 children but the first was emergency c section as my cervix was too scarred to dilate.

It's not common but be ready to tell every midwife you come across that you have had lletz treatment so they are all aware.

Also if you are not offered one push for a cervical length scan at about 22 weeks

DancerAtHeart Thu 05-Jan-17 22:08:18

It says I have low grade dyskaryosis- is that shah you had too?

The colposcopy leaflet describes the process but doesn't say much about freezing the cells off.

I'd be happy if they did that

Like I said I have no interest in kids, they can take it out if they want

Bluesrunthegame Thu 05-Jan-17 22:08:22

Ineedhelp's experience is exactly the same as mine, but she put it better than I could! I had an lletz a couple of weeks after a colposcopy. I had a small sit down after then went home on the train. I didn't lift anything heavy for a few weeks after, which was on dr's advice, and didn't have penetrative sex for about 4 weeks, I seem to remember this was on dr's advice also. Ouriana had different advice on sex, I note. I had just begun my relationship with current partner (six years now) so I checked and it was OK to have an orgasm, just not penetration.

Your news is scary, yes, but it doesn't mean you have cancer. Here are some flowers flowers, and I'm also sending you hugs.

Ibloodyhatethomasthetankengine Thu 05-Jan-17 22:08:23

Garden geek, if you know you have HPV and you have a 'visible' strain of it, that isn't the same strains that smear tests are concerned with and a test wouldn't come back 'abnormal' on that basis - just in case that helps you!

DancerAtHeart Thu 05-Jan-17 22:08:45

*is that what you had too not shah

Sorry typo

GahBuggerit Thu 05-Jan-17 22:11:47

also, abnormal cells could just be minor changes that often revert to normal on their own. after my first abnormal result i had another smear some time later beford being referred due to this. its good you have been referred quickly, you wont have it hanging over you for too long.

its very scary and nothing anyone says will stop that shitty little voice in the back of your mind but these consultants know their stuff and will get you sorted xx

doleritedinosaur Thu 05-Jan-17 22:13:02

Sorry to butt in gardengeek if you do have the treatment you need cervical length check between 14-16 weeks & 20 weeks plus 24 if it is shortening.

I had CIIN3 cells & treatment which luckily didn't cause scarring so was able to give birth naturally but the treatment can cause dilation problems in birth.

OP it is scary but just take it a step at a time & if you do need it, you can be sedated instead of awake.

Ouriana Thu 05-Jan-17 22:13:55

Low grade dyskriosis is the best one, it means theyve caught it early!

Its usually graded along the lines of low= CIN1 medium/moderate=CIN2 then severe which is CIN3.

Low grade changes mean at your colposcopy they will double check to see how advanced ut is but probably just want you to come back, rather than treat it immediatly.

Often the adnormal cells will corrwct themselves.

As far as sex goes at the moment you will be fine but after treatment you may have to abstain (anything from 48hours to 6weeks depending on what they do).

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