Cin- treatment options, symptoms etc etc

Hi guys, ok so a few weeks back got result high risk hpv an borderline, 2 weeks ago had colposcopy and biopsy, I am still awaiting my result, on the day of the colposcopy the doctor said it looks very very mild Cin1 if that- but will send of to confirm this- on the screen 96% of my cervix looked healthy and pink and there was a tiny ring of dullish white round the whole, my question is- I have lots and lots of vaginal discharge I mean strings of it- I have no infections stds apart from hpv also I bled a couple of times when having sex, and inbetween and had this blood liketelly thing come away a couple of months ago which promted me to get smear in first place I'm 24 so this is my first one, my questions are-

1- they say hpv has no symptoms yet a lot of people I speak to notice increased discharge even if Its just hpv and no cell changes, so would all the discharge be due to that? As I have no other infections going on I have been tested for EVERYTHING

2- I had my biopsy done I experienced a day of lots an lots of bleeding then stopped the next day- that worried me is that normal?

 

3- also sincw the biopsy I have intense itching in my vagina sorry to be graphic :-/

4- if my result does comas back as cin1/mild can I get it treated as I have got unexplained symptoms and I'm 99% positive it's from hpv and cell changes I just know it is. Can I say to the consultant I want it removed even if it's mild? I can't bear it sitting there waiting to progress- its ruining my life. 

5- if it's slightly more severe cin2/3 and I have the leep- will this cause me even more bleeding because just a biopsy had me on the loo all day checking for blood etc. and for some reason I take ages to heel, can they put extra solution to calm bleeding?

Im young, scared, angry at myself for not knowing about this hpv, I'm scared of the fact I wiprobly ably be facing treatments after treatments and just want it gone! Has anyobe got advice or can answer my questions???????

Also heard that folic acid helps dysplasia?? Anyone tried it?? Xx

Hi Amy, 

Please don't be angry with yourself my love - none of this is your fault and you haven't done anything wrong! I hope I can reassure you as well, so you can feel less scared because actually, there's a lot of really positive stuff in what you've said.

There's a lot in your post, so if it's ok with you, I will take your points one at a time, in the same way that you've numbered them, so you know what I'm answering Smile 

1. HPV does NOT have symptoms. CIN also does NOT have symptoms. However, some other, easily treated things (such as bacterial vaginosis) do produce symptoms. HPV and CIN do not though, so your discharge will NOT be because of HPV or CIN. I know you say you have been tested for everything, but I wonder if they've properly informed you of the results. It might be worth asking them if you've been tested for bacterial vaginosis, which is a really common infection which can cause lots of discharge and is easily treatable with antibiotics. Things such as bacterial vaginosis are really common, and it's not unusual for women with mild CIN to also have it, so I'm not surprised that the people you've spoken to with CIN also have discharge. However, this is NOT because of the CIN or the HPV.

2. It's perfectly normal to bleed after a colposcopy and biopsy. Some people bleed a little bit, some people bleed for longer, but this is perfectly normal, so don't worry about that. 

3. You might have a little infection caused by the biopsy itself. This is very common. Go to your GP. 

4. If your result does come back as CIN1, then it's probably the case that it's been treated by the biopsy already. What I mean by this is that it's possible that what they took out for the biopsy was everything 'abnormal' that was there. If not though, they would most likely ask you back for another colposcopy and remove it then. The whole point of the cervical screening programme is not to leave it in place, but to get rid of it so that it doesn't progress, so don't worry, they won't do that. There is an outside chance they'll do nothing and ask you to come back for a smear test in six months, but probably only if they think they got all of it at the biopsy.

5. If the CIN is 2 or 3 (and it sounds extremely unlikely that it is) then yes, it's possible that you will have to go for an excision and yes, this is likely to cause bleeding. If you're concerned about lots of bleeding then you can discuss this with your consultant before he does the procedure. If they feel it's appropriate, they can prescribe Provera (a progesterone based medication which stems bleeding) but the bleeding doesn't usually last for more than a couple of weeks anyway, can be dealt with in the same way you deal with a period and really is nothing to worry about.  

Also, I just want to clarify the difference between HPV and CIN for you. They are two separate things. HPV has NO SYMPTOMS and everyone gets it at some point in their life, and I mean EVERYONE (apart from nuns!)! There is no stigma attached to it and it is not your fault that you contracted it - even barrier contraception doesn't necessarily protect against it so don't blame yourself in any way. In most people, HPV clears without them even knowing they've had it. Even in people who don't clear it, it won't necessarily develop into anything else and they still won't ever know they've got it. However, in some of those people who for reasons that medicine does not yet know, HPV will go on to create CIN or CGIN, which means that you have cell changes in your cervix but this also produces NO symptoms. 

It's great that the consulant thinks that 96% of your cervix looks healthy - that is really good news. It's also not the case that you're likely to be facing treatment after treatment. If you've got CIN1, the overwhelmingly likely outcome is that it's been removed by the biopsy and that's that! There is no reason to think it will keep coming back and they will put you on more regular smear tests to look after you and ease your worry anyway. 

Several studies have been carried out about folic acid and dysplasia. As far as I know, what they have found is that whilst there might be a correlation between a deficiency in folic acid and the development of dysplasia, supplementing with folic acid once dysplasis has been diagnosed makes no difference to it. There is fairly concrete evidence to show that smokers are more likely to have recurrent CIN though. Keeping generally fit and healthy, eating a good balanced diet containing loads of vegetables, not smoking and not over-doing it on alcohol too often are the best things that you can do, as well as being generally vigilent about your body. 

If after all this is over you're still bleeding after sex, then you need to get that sorted with your GP, but try not to worry about that too much as it's most likely to be caused by something really simple, such as your contraception being unsuitable for you. 

You're very young to have gone through this and I really feel for you. I know it's easier said than done but, try not to worry - it all sounds really positive, actually - I hope that what I've said helps in some way. 

Let us know how you get on. 

Annabel. x

Thank you for your reply, I'm just so nervous that although it looked on on the screen it will be worse with the biopsy result or he didn't test far up or scrape anything so I'm panicking that it's higher up and that's why iv got symptoms? I had a test for bv and every other yeast infections stds etc as that's what the doctor thought Ihave before doing a smear and it was all negative, the discharge is still there since the biospy and I man it's almost like I wet myself but it's discharge and I hae to wear a sanintry towl all the time I feel like its having a hold on my life, iv got health anxiety as it is and I'm not coping at all. Ivhalos had transvaginal scan that was all normal as well so I can't explain this discharge if there is no infections, clear scans it just doesn't make sense, I heard that when normal cells start turning abnormal they kill the healthy cells which becomes discharge that comes away- :-( so I'm freaking out. I don't want to have sex because of all of this- I did the stupid thing and googled only to scare myself more- i know so many people are going through worse at the moment and my heart goes out to them I just wish IGould get myself together!! You may be right about an infection after biopsy as I have had itching since then, did you have many symptoms before being diagnosed? Xxxx

Hi Amy, 

You poor thing - I wish I could give you a big hug!

Ok, first things first: it's extremely unlikely that your result could go from it looking like it's probably a small amount of CIN1 to the biopsy coming back as cancer. And I mean EXTREMELY unlikely. You're panicking (which is understandable), so I think you need to keep telling yourself this. Also keep telling yourself that CIN is very easy and quick to treat and once it has been, there is no reason to think it would come back. 

Your worries about not being tested far up enough etc.. could possibly be relevant to a smear test, but would not be the case with a colposcopy. The consultant would have been extremely thorough and would have checked for all possible signs of abnormal areas. That is the purpose of a colposcopy. 

Some of the discharge that you're getting at the moment could be due to the biopsy. When I had my biopsy, I bled for approximately two weeks. I also had a watery discharge - just like you describe, it was like I'd wet myself and I hated it - which lasted for about a month. To be blunt, it stank as well and I felt like everyone could smell me!! To reassure you, this was because of the biopsy itself and nothing to do with me having cancer. These symptoms post-biopsy are not unusual and are completely to do with the procedure of the biopsy itself. Keep using pads until it's gone, so that you feel secure about leaks/hygiene. If you do have an infection like we discussed, then this will be wearing you down as well, so the sooner you can get that sorted with antibiotics and make sure you get plenty of rest, then the better you'll feel. 

Googling can be a nightmare! Believe me, there is more nonsense than truth about all of this on the internet. Jo's Trust has very honest, accurate and thorough information on its website, so I'd stick to that if I were you. You're not going to find out anything more that is actually true from anywhere else. There are a lot of cranks on the internet who talk nonsense about CIN and cancer, so try and avoid searching for stuff. I've been absolutely staggered at the rubbish that's around and it makes me really cross, precisely because it can frighten the life out of someone in your position completely unnecessarily. I know it's really hard when you just want to get to the bottom of things and waiting for results is horrible, but the internet isn't going to get to the bottom of things for you - that's the job of the medical profession. What you heard about abnormal cells 'killing' healthy cells which then get expelled from the body as discharge is complete nonsense as well. Cells simply do not work like this and the body does not expel cells from the body - it's just not how the body works - discharge is a completely different thing that happens for a number of reasons. It's can be a symptom of a number of things, the vast majority of which are easily treatable and won't have any long term consequences. Like you say, they've ruled of BV and various other things - that does NOT mean that therefore you must have cancer. I really cannot emphasize that strongly enough. 

I'm not surprised you don't want to have sex!! You're feeling frightened and vulnerable and you've just had your bits messed around with - why on earth would you want to have sex?!! Tell your partner how you're feeling and if he loves you, he will understand, be patient and want to help you feel safe again. If you don't feel ready yet, then you don't feel ready - that's fine! You're entitled to feel however you feel. Out of interest, what contraception do you use? If you don't want to tell me then that's fine - I am being nosy!! It's just that sometimes, some kinds of contraception can cause the symptoms you've been having. If you've got a coil, an implant or are on the pill, then it's worth looking at those as well, as not everything suits everyone. 

Yes, I had stacks of symptoms before I was diagnosed, and they got worse and worse. Because I had cancer, my smear came back with severe abnormalities and I was referred for a colposcopy. My cervix did not look pink and healthy and there was clearly something wrong, so please don't think that because you're getting discharge and some bleeding and because I did too, that means you must have cancer. It does not. I had a lot more symptoms than that and they were severe. Also, it's important to keep in mind that my smear came back as severe abnormalities, and my tumour was the 'high up' that you're worried about, so the consultant wouldn't be saying it looks like mild CIN1 if you were in the situation I was in. 

I think you're right that you need to get to the bottom of why you have discharge and abnormal bleeding (apart from that caused by the biopsy, I mean), but you can do this with your doctor once it's been confirmed that your CIN has been treated. It's really frustrating when you have test after test and they come back fine but you still have symptoms. Rest assured though that the colposcopy would pick up anything sinister and it's extremely unlikely that you have anything other than CIN1 when it comes to cell abnormalities, going on what you've been told.

You can keep writing on here if you like and I will keep replying when I can, if you think that would help you. Don't worry about being 'too frightened' or not coping - you're young and you're going through something that's scaring you - you don't need to apologise for how you feel just because someone else is 'going through worse'. All anyone on here would want to do is help you and reassure you. Remember as well that people like me really are the exceptions, rather than the rule. The women on here who have got or who have had cancer are completely outside of the odds. The overwhelmingly likely scenario is that you're fine. 

When do you get your results?

Sending you a massive hug. 

Annabel. x

 

Hello!

I can't answer a lot of ur questions- but what I can say is from my experience;

My first smear came back as severe CIN3,herby straight for colposcopy and lletz within two weeks.

The dr and nurses were awesome and made the whole thing quite easy.It took minutes and was relatively painless (to childbirth) I had it done 4 days ago....having slight discharge, but no real bleeding as yet. Although I have read that bleeding can start after a few days sometimes...

 

Just waiting for results now...

 

Hope that helps put ur mind at ease a bit? X

Thank you both for your replies I will update more once my biopsy comes back xxx 

Hi Amy, my situation sounds close to yours so I thought I'd share with you my experiences too. I too have been suffering with post sex bleeding and strange consistency discharge.

I first went about this after my 24 th Birthday and was told I couldn't have a smear. 1 year later I went for my 1 st smear and that came back as mild dyskaryosis HPV +. I had biopsys and bled quite abit and they told me my bleeding after sex was due to cervical erosion. My 2nd colposcopy 1 month later was due to biopsy showing CIN 1&2 and them not sure wether to do lletz. They decided too leave it alone.

I continued with abdo pain, bleeding etc and my gynae consultant decided to do a laparoscopy, nothing unusual was found. My 3rd colposcopy was the revelation, he was just going to do a smear as my cervix Looked healthy. However when he touched it with cotton wool it erupted with blood from high up the cervical canal. Unfortunately the only way to stop it was with cold coagulation with NO anaesthetic, he also did the smear and took biopsies from Hugh up. It was painful but bareable. 

He hoped that the cold coagulation would permanently stop my bleeding after sex, but I was told it can take 3months. It. Has improved greatly and the treatment has removed any little CIN left, my latest smear and biopsy was clear!

as for everything else, I have learnt that usually when I get that stringy discharge like u describe its usually caused by thrush that is up at my cervix that I don't no about....I get no other symptoms.

feel free to PM me if you like. I hope this helps xx

id like to just say that ANNABEL you explained everything in a clear and matter of fact easy to understand way, keep up this good advice ladies, for some people these pages are the only place they will share their feelings, ty 

Thank you Luceee, that's kind of you to say. I know from experience what a terribly frightening and vulnerable time it can be, so am happy to do whatever I can to help other women in similar circumstances. x

Hi Hun I thought I would write to you as you are in the same position I was back in November. I just wanted to ofer you some reassurance about everything! I went for my first smear and within week had severe abnormal changes. On 12th December I went for my colposcopy. I was really nervous but the nurse and doctor were amazing. I had two biopsies and although these weren't pleasant I think they were bare able! After I did bleed a bit bit this will die down after a few days. On New Year's Eve I had my results confirming cin3 and was booked in for lletz treatment on 6th February. Lletz treatment again isn't pleasant but it's just something you get on with and do because you know that anything is better than having the bad cells- I had four injections to numb the area (ended up with a 5th as I did feel it a little when they started the treatment) but as a whole wasn't horrific! Afterwards I was in a fair bit of pain for a few hours after but nothing a hot water bottle, pain killers and a hug didn't sort out- I felt pretty much back to normal after a couple of days! This was a week ago and today I received my result advising that they had successfully managed to remove all the bad cells! I'm still experience a small amount of bleeding and you may have seen written on here you do get a strange charcoal type discharge but its perfectly normal and manageable! I think what I wanted to get across more than anything is that as a whole it isn't a great experience and one I would wish on anyone but as girls we deal with it and get on! You'll be no different! All I would say tho is stay strong and think positive, your on great hands and will be well looked after! Hope that you get good news and that you don't need the lletz but rest assured if you do need it or request it and have it you'll be fine! Feel free to message me anytime! Xxx