Fear of Recurrence

Hello everyone,

I'm new here, i've been struggling to cope with this all on my own and thought i might be able to get some comfort from people who have been through what i've been through over the last year.

I was called for my first smear test about a year a go when i was still 24 (Thank heavens then called me in earlier than the usual UK age of 25). I thought everything would be fine and didn't think much of it, until i received my results a week later.. abnomal smear and positive HPV. I was terrified and ashamed. My boyfriend was supportive and said that girls he had dated in the past had had abnormal tests every year and had biopsies but they'd all been fine, which made me feel (somewhat) better. I then went for my biopsy, which was CIN11, and very traumatic. I then went for my loop procedure following this.

6 months later i had my follow up smear which came back as normal, but showed that my HPV was still at large. They said i wouldn't need another smear for 3 years.. is this right?? This seems like a long time to go without one after this ordeal especially considering i still have an active HPV infection.

Before this all happened i was a hypochondriac with anxiety problems. I am still this, but with the added fear that this is inevitably going to come backat some point.

I had somewhat put this to the back of my mind (scar tissue has made sex painful ever since the loop procedure) until my boyfriend came home last night saying he has found a lump in his neck and has had a sore throat and he is worried. I googled it and BAM, HPV related throat cancer came up.

 

I then went on a google frezy and terrified myself about the future and what may happen over the next 3 years, and whether i will be able to have children one day.. and what if this HPV has now affected my boyfriends health? There's no way of knowing who had it first, it's irrelevant really, but not a nice thought. He didnt mention if the girl he was with previously had HPV, only that she had abnormal smears every year and had a lot of biopsies.

 

  • Does anyonehave any advice on coping with the emotional side of this? I feel very scared and alone even a year later.
  • Is it normal to not have a smear for 3 years even with an active infection? I am considering private smears in the meantime.
  • Will i be able to have children even if i have to have another loop procedure? I am not ready for children yet, but i am scared that if i wait too long i may have another operation which could result in me not being able to have any.
  • Has anyone else had issues with sex post-loop procedure? I feel it will never be how it was before, and i feel like i'm letting my partner down even though he would never complain and would always be supportive. We still have sex, but it becomes painful for me and certain positions and a no-go anymore. I feel less of a woman now.

Thank you!

Didn't want to read and run.  I had a loop 3 weeks ago and waiting for results to see if I have HPV, horrible waiting for the letter!  As far as the emotional side goes, I find that talking to the ladies on here helps massively, and having a supportive partner and/or family helps too; just having someone around to listen to your worries really.  

I'm still healing right now but am actually dreading having sex, so scared that it is going to hurt like you mentioned.  Maybe see a Dr and ask if that can be helped somehow?  Also, I am very concerned about the loop regarding having children, just like you.  I have no kids yet and I would like to in future, but I'm worrying if I need to have the LLETZ done again that it is further reducing the chances.  The Dr told me that risk of premature birth or miscarriage in the later stages is higher than normal, and that it gets higher every time you have the loop done, but what can you do?  Better to have it done and live to possibly have a child than not get it sorted and have the worst happen.

 

I'm coming back as a man!  Feel free to message me any time if you need someone to talk to, I know that talking helps!

Hi I do not have HPV, but I am CIN1. Latest smear done this month showed this result. In September 2013 I had borderline nuclear changes.  I needed Cryocautery. This was to also treat a cervical ectropion I had. My sister had a similar case; she had another treatment. She had treatment 2 times, and is now fine. She also had 6 months in between appointments. She now has 2 beautiful children. I had treatment last October, and was told I have to wait a year for a follow up. They say its normal for the stage my changes are at. With the great support of my boyfriend, family and friends I do not feel as anxious.

 With sex, it hurt for a bit after, but fine now.  Do not worry ladies, I am sure you will be fine. We are doing the right thing and getting checked out and treated. We all have beautiful futures ahead of us.  Any worries, you can always ask your GP or gynae doctor/department your under at the hospital you are recieving treatment in. I checked with my GP and consultant, and they said its ok to leave it till October for my follow up as planned.

Thanks for the replies ladies, it's not nice to know we have to go through this. But it's nice to not go through it alone and know it's not as uncommon as it feels. I have my fingers crossed for us all, and yes, we're the lucky ones who sorted it out before it got serious. Thank god for smear tests! 

I hope the emotional effects dull over time.. the doctor said the pain durig sex for me may be due to scar tissue which not everyone gets but unfortunately for me she said because of this its likely to be ongoing. I know that most people do recover and have normal sex agan, i think i was just in the unlucky few of that part! But hey, at least i can still have sex, which im grateful for!

Fingers crosses hopefully this wont be an issue for you, i really hope so!

You never know though, one day it might feel better again, bodies are strange things!  Got to keep an open mind :)

Stephanie, you sound a lot like me. I am on the waiting list for treatment. I've had abnormal cell changes (mild) off and on since I was 26 and am now 34 so doctor is saying I should have treatment. I expect mine will go the same way - cell changes gone but HPV still there. I get bad anxiety and I am making my boyfriend's life a misery. One cannot help feeling disgusting and dirty as this is a sexually transmitted disease. I can't believe kids in schools aren't taught about this along with gonorrhoea, chlamydia and HIV - how hard that we just missed out on the vaccination that could have saved us from all this. I don't know how I will cope for the foreseeable future with waiting for colposcopies and test results and treatment. Feeling very low. Are you doing any better now, Stephanie?