I have always kept uptodate with my smears and was on the pill until 2009 ish
- My smear in 2010 showed Changes and Cin 1 was confirned as this on colposcopy and had LLetz
- 6 months later showed Changes and Cin 2 confirned as this on colposcopy and had LLetz ( the doc and nurse were concerned by this !
- 6 months later - clear smear but started to get odd pains like after the 1st colposcopy
- I was put back on 3 yearly test due to a negative HPV virus
- 6 months later I got a smear privately - Cin 1 again !
- About this time I started to get severe pain this was put down to endometerosis and tried mirena coil - had it removed after one month due to hormones causing problems
- The hospital did Colp and took biosies to try to get my immune system to fight it
- 6 months later I had another Colp which was meant to have been a smear came back Cin 3 in only 6 months again
Sorry about the long list :-(
My question is what next LLetz does not work and I have had my children. I just want the cells out. Do you think I will be allowed a hysterectomy to sort this ?
Thank you in advance for any advice
I'm so sorry for all you've been thorugh and I hope you get your consultant appointment through very soon. It's difficult because there doesn't seem to be a lot of info out there for women who have CIN return after treatment.
I'm not a dotor obviously, but from what I've read they can do a hysterectomy when the CIN is persistent or keeps returning, so might worth asking about if the doctor doesn't mention it. There's some info in the Macmillan cervcial screening booklet. You could ring them or go to the website to get a copy to take along with you to your appointment if that would help. I can totally understand you wanting the cells out.
As someone who's had CIN since LLETZ, I feel for you. I'm facing a possible 3 year recall as I'm 'just' CIN 1 but HPV negative, even though I haven't had a normal smear since LLETZ. If this happens I'll also be going off for a private smear, as think if the CIN is persistent it needs to be monitored not left for 3 years. It doesn't bear thinking about that you could have not checked for 3 years considering what's happened, thank goodness you didn't just leave things.
All the best, let us know how you get on x
Thank you for your reply I have a appointment in a week so count down now.
I will have a look at that leaflet it sounds promising.
I think you should consider getting your smear at 6 months done privately. Like me you have a history.
Will let you know how it goes.
Thank you again x
I'm glad you've got an appoinment date and it's not too far away, as I think the waiting and wondering can be so hard. All the best for when you go, hope you get a good doctor.
Take care x
I ve had a look at the macmillan site and is perfect for the info I need so thank you.
I also called them. It was so lovely just to talk to someone who I felt I did not know but understood.
He got me to realise I can t do this alone and have to let my friends and family help :-)
I was worried I was starting to sound like a record that was stuck :-)
I'm so glad you found the info useful and that it helped to talk. It's not always easy to do so, but I think once you start to talk then it becomes easier. Do lean on friends and family, you'll probably need them, and if you do get the hystectomy it won't be an easy thing to go through. It's not always easy asking for help or support, but I'm sure those who care about will be there to help you. There's this site too, so do use it if it helps - grab all the support you can get. You're not a broken record as you put it, you're going through something very difficult.
It's also hard when you know most women have LLETZ and they are ok, yet for some reason that hasn't been your situation - or perhaps it's only me that feels that way. I've never been promiscious, I look after my health, haven't had a relationship in over 3 years, and yet I can't rid of this CIN. But that's just life I guess.
Do you have someone to go along to your appointment with you? That can help, it's another pair of ears to take everything in, plus good sometimes just to have someone there.
thank you and yes my husband is coming with me and know if he my best mate will support me.
Yes annoying that the easier solutions never worked but got a good feeling next step will x
Keep in touch
Just to wish you all the best for your appointment, it's good your husband is going with you. Let me know how you get on.
I've got my next smear booked but it's not until July. Will be good to find out whether anything has changed.
Well finally got there and was offered two choices.
Either a cone biop but chances of getting all the cells were thought not good or Total hysterctomy by keyhole.
I am happier I am getting something done to stop it.
Will be sometime before October hopefully and pre-op August
Not long till July but I know feels like a long time.
please let me know how it goes :-)
I'm glad to hear that the options were discussed properly with you and that you have been able to opt for the one with the best chance of getting rid of all the cells. I can undertsand what it a relief it must be to feel you're going to be able to get something done. A big decision, but the best option for you.
Yes my appointment feels a long time away, but I've decided I'm not going to leave the check so long in future. I've lost faith in the screening service and so will pay for private tests if needs be.
Let me know how things go for you, and take care.