I think so but I’ve asked my doctor to refer me to a different hospital (an hour away but it’s near my family) just hope they will accept me.
Really sorry to hear your news lovely. Advice from the girls above is wonderful as always. We are here for you x
Hi Eleanor
So sorry you are going through that , it must be frustrating to know you have something hidden somewhere in your body . Good thing to change hospitals. Also can you request for an Endocervical curettage? In some cases, cell abnormalities are detected in the glandular cells found in the inside lining of the birth canal of the cervix. These abnormalities are known as cervical glandular intra-epithelial neoplasia (CGIN) .
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Hi Jane yes I will ask for that. The thought of CGIN frightens me as I’ve had HPV so long. But if it’s CGIN why does it keep coming back as CIN? The smear is saying the squamous cells are abnormal.
Is there a reason they don’t do an ECC as standard in high grade cases? I’ve had 3 opportunities when they could have done it. My colposcopy after my first smear where they did biopsies, a second colposcopy with the doctor who did cold coagulation, and at my test of cure smear performed at colposcopy again at the hospital. I take it I would know if they did it though?
Hi Eleanor,
No need to be frightened ( CGIN is very rare) and am so very sorry if I caused you to worry , am just trying to research for you and see how I can help put your mind at ease . Doesn’t necessarily mean you have something up there other than cin and no abnormalities. As I said again CGIN is rare and can also be hard to detect especially with Punch biopsies and colposcopy coz they are unreliable means of detecting CGIN.
I don’t know why they dint offer other test but since you are changing hospitals I would suggest you tell them that you are bothered and want to have all tests necessary to put you at good mind set. All will be well , it may end up to be nothing so relax . Keep us posted
xx
I believe the incidence rate of CGIN is somewhere between 6 and 9% but rising. It’s unlikely you have CGIN if your smears are just showing CIN changes. I was diagnosed after a routine smear picked it up. If it’s something you are concerned about then you could ask for a smear in the colposcopy clinic with an endocervical brush. It’s mildy more uncomfortable than an ordinary smear as they try to get cells from higher up in the cervical canal. This would be a less painful procedure than curettage.
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Just got my result from test of cure: HPV negative.
Incredible!
Sending good vibes to all others waiting for results.
Lots of love, xx
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Wow, wow, wow! Huge congratulations! I’m so happy for you. Will they still check you in 6 months due to your previous cancer diagnosis or does it go back to 1-3 years now you are hpv negative? I’m truly elated for you xx
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I have two more 6 month checks, then it will go to yearly for 9 years. As far as I know the plan stays the same whatever the result. I think if I’d not had the microinvasion I’d now be put back onto 3 yearly smears which just doesn’t seem right. I’m glad of the extra checks.
Good luck with yours Lemon and others. Thinking of you, xxxxx
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That’s great news Dreamland. Xx
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So another update from me. The nurse who told me I was negative was in fact incorrect. I’ve now had a more in depth letter explaining I am positive for HRhpv positive with borderline changes and they want to see me again in April for Colposcopy. I can however continue with fertility treatment but they will want to see me even if pregnant.
Oh KultKoala, that’s frustrating. However, great that you can continue with your conception journey safe in the knowledge you will be watched closely. You’ve got this! Xx
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How is this possible for them to read out completely different results. What a joke, pleased you can continue your journey though. Good luck please keep us updated x
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Ohh there was, another post yesterday or the day before asking what micro invasion meant.
I’m so pleased checks are still going to be so thorough.
I can imagine us both in 10 years time celebrating completely cancer, abnormal cell, & hpv free… Possibly sat on a hot beach front with cocktail in hand 
.
I’m so happy for you my lovely.
I hope you don’t mind, but I am going to share your posts on my thread, for all those reading through it, that need to read positive results too xx
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Oh lovely, I’m so sorry they have messed up your information yet again. I hope PALS are continuing to offer you good support.
Really pleased you are continuing to be supported through conception but heartbroken that it is so many brick walls before the clear path. Heartfelt love and hugs xxx
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Honestly I really don’t know. It’s so frustrating. The whole point in me talking to a nurse was because my letter was vague and I was concerned they had seen cell changes because they’d invited me back for another smear in 6 months. She point blank told me it was negative and they’d made an administrative mistake and I should have been invited to a 12 month smear. All I can think is that she was only looking at the vague letter they had sent out or that she didn’t know how to interpret my results.
That is upsetting. You need to feel confident in your care. I think it would be worth following up and asking why this happened. Sending love, xx
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For goodness sake how can they have so many cock-ups? I’m so sorry it’s still positive but great the changes are super minimal and it doesn’t need to impact your fertility plans.
An update from me - I’ve changed to a University teaching hospital now and have a colposcopy appointment on Monday. I’m not sure whether the consultant or a nurse will see me but I have googled the name of the consultant on my letter and he seems to be well regarded with good reviews from patients who have seen him privately. So I’m hoping for a better outcome this time! I still haven’t received a letter with my smear results or any contact from the original hospital. So it’s a good job I phoned for my results and then was able to advocate for myself in changing hospitals via my GP.
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! I thought I would update. I have a colposcopy today with a consultant at a different hospital (university and teaching one). Once again their impression was that it was normal. He said he couldn’t see any high grade cells nor any low grade cells it was just normal. He said let’s perform another smear and took what looked like 2 or 3 smear swabs. He seemed to think it might have gone back to normal which I said was a massive long shot considering it was high grade 2 months ago and they can never see the cells. He said if it comes back high grade again they will discuss me at MDT.
One thing that upset me was he asked if I had a loop before. I said no only the cold coagulation and then he was like oh hmmm. Like sounds surprised and confused but I wasn’t really able to clarify what he meant. Now I’m stressing I might have bad scarring? 
