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If you are worried that your smear results went from CIN 1 to CIN 3 in a short space of time then please read my story as I want to reassure you that it’s not a case of ‘it’s progressed quickly’. I have just returned home after seeing an amazing private gyno oncologist and I feel like the world has been lifted from my shoulders. So I wanted to share my story in case you can relate to it and it puts your mind at ease.
In April 2018 I went to my GP with symptoms of bleeding after sex, she confirmed I had lesions and I went to get them removed privately so I could get it sorted quickly. The gyno that removed them did a smear test that came back with low grade abnormalities and HPV negative. She referred me to colposcopy due to my symptoms but was told by colposcopy I should wait 3 years for another smear as I had low grade abnormalities and no hpv so they would not see me. (The doctor today told me this was wrong and I should have been seen due to my symptoms). As my symptoms persisted I went back to my GP in Aug 2018 and asked for a smear test. The smear results came back as low grade but HPV positive this time. I was a bit confused as I didnt have it a few months before. (The doctor today explained that a smear doesn’t always pick it up and I would have had the HPV virus a few months ago.) I was referred to colposcopy and went in November.
November 2018: I went to my colposcopy appointment, I wasn't too worried, I was very chilled out and just thought that if I have abnormal cells they will remove them and that will all be over with. However, the nurse scared the living day lights out of me. She called other doctors in to peer at my vagina and they all started whispering to each other, she then turned to me and said I would need to be put to sleep to have an operation. I was in shock at the time and didn't think to ask any questions, I just left and cried my eyes out wondering what was so bad! I waited anxiously for my results from the biopsy and what ‘operation’ I would need. At this point i'm thinking it's so bad I have to have a hystorectomy! The results came back and I had CIN 2 and needed the LEEP procedure which I had in December. The results from the procedure confirmed I had CIN 3 and Hugh risk HPV. So from having low grade abnormalities in Aug to having severe CIN 3 in December, I was quite concerned about this ‘rapid progression’. I rang and asked my doctors why it would have gone from CIN 1 to CIN 3 and I was even told ‘it must have progressed quickly’. I’d even read things on here that someone was ‘very unlucky’ and that it shouldn’t progress that quickly. Anyway, I’d had the cells removed so decided to move on and not worry about it anymore...Until 6 months later when I had my cure test.
July 2019 - Cure test (a smear 6 months after treatment)
This came back abnormal with border line changes. I was devestated! I thought that this 'agressive' strain of HPV has caused cells to grow again, and as it was so soon after my treatment I thought It would go to CIN 3 and then cancer very quickly given what happened before. My partner and I were worried sick, I was wondering how we could have children if the cells keep coming back and progressing quickly, I thought I wouldn't make it through a pregnancy without the cells turning to cancer. We discussed feeezing my eggs, surrogacy, adoption. From what I’d read and the lack of information from doctors we just didn’t know what to think!
I was fortunate enough today to go and see a top gyno oncologist who explained everything to me, which I’m going to share with you now.
Aug 2nd 2019 - Today I went to see a lovely gyno oncologist that explained all of the above to me and it all makes sense to us now and we really needant have worried (Or asked my sister to have my babies! ;)
He firstly explained how a smear test works. They only scrape the surface of the cervix to identify any abnormalities, they are not particularly reliable results and although mine came back as CIN 1, I probably had CIN 3 all along, the smear just didn’t pick up on the area with the CIN 3. He then explained that during the colposcopy which came back as CIN 2, it was just the area they took for the biopsy that was CIN 2, it just didn’t pick up the CIN 3. When I had the procedure, it picked up the CIN 3 because the LEEP procedure scrapes away a bigger area so it picked up the CIN 3 that was there all along. It Did not ‘progress quickly’.
The reason my cure test was abnormal wasn't because it has grown back.. it's simply that it wasn't all removed from my treatment! I had another biopsy today which has actually removed those cells and will await those results. I am also waiting for results to see which strain of hpv I have, and worst case scenario is that it is hpv 16 which is the one that is persistant, but they will just keep and eye on me and I will have smears every 12 months.
I really do hope this has explained CIN to anyone out there that is worried about it 'progressing quicky'. It is very likely that isn't the case and you've had CIN 3 the whole time! I know it's easy to say don't worry, and you will still be worried, but having being told this information today has lifted a huge weight of our shoulders and we are so happy. I wanted to share it with you so I hope it puts someone elses mind at ease.