CIN 3 with no evidence of HPV in Post Loop Biopsy

Cervical screening results
1

Hi Everyone,

I have just come back from my 2nd Colp since everything started and my Colp Nurse suggested I come here for support.

 

I am 25 and I have a wonderful husband who I have been with for 6 years. I don't have any children and I currently studying at Uni.

Since my early teens, I have always had concerns about my periods and I have been banging on my GP's door now fow 8 years plus. I have been on the oral pill for 2 years from 15-17 and then the Depo contraceptive injection from 17-20. I was taken off the injection by my GP at 20 due to bone density concerns and I have used condoms ever since.

In 2009 I went to my GP (who thankfully I don't see now) and explained that I was getting bleeding after sex and stomach pains and that my periods are getting me down as they did in my teens and I think that there is something more going on. He laughed and told me 'you're a woman and lots of women go through what you are going through, it's perfectly normal'. I left the Doctors crying and haven't returned until my first smear call. I accepted that perhaps he was right and got on with it!

I got my letter for my 1st smear about a month before my 25th Birthday. I booked in with the Nurse at my Doctors straight away as I know my own body as a woman and I knew this was opportunity to prove my point. However I did not expect things to turn out as they are.

My result came back as Severe Dyskaryosis (CIN3) and I was referred for Colp in July 2012. The CIN covered all 4 quadrants of my cervix so they removed about 2-3 CM of my ectocervix (the outer bit I think) with a Loop Diathermy. So after this I went away thinking that was it and the nesty cells were gone.

They took away 3 samples at the time and two of the edges of the samples had involvement. They chose to monitor this in 6 months and thought perhaps that the Cauterisation after the Loop would have taken care of any cells that wanted to have a go after the main ones were removed! 

Interestingly, none of my biopsys showed any evidence of HPV. HPV was therefore absent in the samples which I always thought from what I have read is the main cause of CIN3

So I returned back for my repeat smear/follow up smear in December 2012, I had my results last week which showed CIN3 still post treatment,

So I went for a Colp again today and I saw on the screen this time, I have a lesion on one side of my cervix and then CIN3 cells on the other which have a mosaic vascular pattern. The Nurse took a biopsy of this and the other lesion and she has sent them off to be looked at.

She tells me that she is going to refer my case to be discussed at an Audit/MDT and then they will write to me with a plan of action.

She said that this does not mean Cancer and that the MDT will help them to decide how I am managed, as they don't want to treat me with Loop Diathermy again due to the risks involved so soon after the last.

I just wish this was all over, I just wanna have one babe when I have finished my degree then they can have my womb if they want it, I don't care as long as I am free of this worry. I also spoke to a new GP about my full concerns and he has referred me for an Ultrasound of my Womb to check on my historical concerms around pevic pain, bleeding etc. My younger sister has Polycystic Ovaries but is 7 months pregnant at the moment so this is nice news. Hopefully my scan will be clear!!

I understand that there are people who are all just as scared as me here and also people who have a diagnosis of Cancer and probably wish that they were at the pre-cencerous stage like me and I feel a bit guilty for offloading in view of this. I just wanted to share my story as I when I have been reading, I have not seen many people my age with this level of cell at a first smear and I guess I thought this may help me and others who may be in the same boat! 

Thanks for reading. Sorry it's so long!

2

 

Hi Bex

Good that you have come here – I’ve found it to be a wonderful source of support and understanding. Not everyone really gets what we are going through – even though my boyfriend has been very lovely, he struggles to really understand how this is affecting me.

That’s really shocking about your GP but sadly, I’ve heard similar stories. It’s not good that GPs are like this, I would always urge a second opinion – bleeding and pain are not part of what every woman has to go through and he should be struck off for saying so! It’s worrying, considering that a recent survey shows that one of the main reasons women  don’t report bleeding outwith their periods is because they think it’s all part of being a woman. Yes, bleeding could be down to many reasons and none of them CC related. It should always be checked out though and your GP has a duty to do so and take you seriously. Grr! Rant over…

I’m sorry you are going through this, but it sounds like you are now in very good hands and they are doing everything they can to treat it with minimum discomfort to you.

I understand exactly what you mean about getting pregnant. I’m 33 and always wanted to wait till the time was right to have a baby. Now, I wish I had done it sooner! I really want children and am terrified this will jeopardise my changes. I’ve already decided that if this recurs, I’m going to start trying to get pregnant, so if needs be (jumping ahead massively here I know but panic does strange things to you!) I can get a hysterectomy. Obviously, I’m hoping it won’t come to that. But I need to be realistic about it all.

If you haven’t had children, I think they do everything they can not to affect your fertility, so I’m taking heart from that.

Like you, I feel guilty for airing my concerns when many ladies on here are bravely dealing with the worst case scenario. But we are all experiencing fear and uncertainty which is disrupting our lives. I don’t think I’ve had a worry free day since I got the first letter about my abnormal smear test results in October!  For me, it’s the waiting that’s the worst – sounds daft maybe but the actual colp and lletz were walks in the park compared to the dread of coming home to an NHS envelope!

Sorry, I’ve rambled somewhat! But do keep sharing here, and I really hope all turns out well for you - I'm sure it will. xx

 

3

Hi Bex, I just wanted to say your situation shares similarities with mine. I am 25 also have had continuous issues with my periods and post coital bleeding for + 2 years. I went to the doctors when I had just turned 24 to talk about the bleeding and pain and he requested I had an early smear, when I returned for said smear 1 week later the nurse refused to do it based on my age and said I had to wait till I was 25. She proceeded in an sti screen all negative and told me I had a healthy looking cervix!

fast forward to my 1st smear, said did the smear but stated by cervix was covered in blood so did not think it would be able to be processed, insisted I must be on my period despite the fact that I'm on a contraceptive pill to deliberately stop them. The sample was processed which came back as moderate dyskayosis and a colposcopy booked for 1week later. It turned out theatre as well as the CIN, i had erosion, inflammation and exposed vascular areas that were rupturing. Science march I have had colposcopys and biopsies for the CIN but also scans and a laparoscothe to find the source of the abnormal bleeding and pain. None of which came back with answers.....untill my colposcopy on the 18th dec the consultant was just going to do a smear providing the iodine test was ok, but when tofu lightly touched my cervix with a cotball wool balblood erupted from the cervical canal bit and bled profusely he had to cold coagulate to stop it.

the smear and biopsy he took were fine no CIN found and he hoped that would be it and that the cold coagulation would stop my pair regular bleeding....but 2 weeks after it started again and now I am returning to see him to discuss what next. Hope this isn't to blah and makes sense. And is in someway usefull or reassuring xx

4

Thanks ladies for all your support. I guess all I can do is wait. At least I am being monitored and that's comforting! I really hope things improve for you too xx

5

Just to update,

 

The Colposcopy Nurse phoned me on Tuesday and she has confirmed that the Biopsys have come back from the lab and that the cells in the biopsys are NOT Cancer. They are CIN 3 and that I am HPV negative which is a relief obviously. They are still going to MDT I think because of my age so that they can make a decision of how to treat me. The Nurse said they may wish to do a 2nd Loop Excision. However, depending on the extensiveness of it, they may suggest a Cold Knife Procedure, which I am not keen on, however I guess it's better than it progressing!

 

I don't know if this gives anyone hope who is going through a similar experience but I just thought I would share this. I am booked into clinic on 12th Feb for another Loop and the Nurse said that if the Consultant decides that she wants to operate then this can be changed.

Thanks for your support in reading and offering kind words, it means a lot!