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Scared it's come back

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Sarahlucy30
Scared it's come back

Hi,

I'm new to this site but can I say how great I think it is to have some sort of support network. Going thorugh the stress and trauma of CIN, cervical cancer and treatment is a life-changing experience.

I had treatment for CIN 2 in 2001 and have since had clear smear tests. This year, the results have come back with mild borderline change, which my gynecologist says is probably due to inflammation. Needless to say, I was devasted and I'm convinced it is due to HPV. When I had my first abnormal smear in 2001, the result was exactly the same - mild, borderline etc. 6 months later, it was already CIN2.

My gynecologist wanted me to come back in 1 year for a repeat smear, which I found totally unacceptable. He has now agreed to do it in 6 months time, but only because I was anxious. He is also against HPV tests, and said my main danger was being overtreated and therefore having my fertility effected, which is a major concern for me, as I am desperate to have children.

I'm trying to figure out whether it's worth having an HPV test? I thought the HPV I had four years ago would be cleared from my body by the cone biopsy. I have been with my partner for 10 years and we are in a comitted relationship, so I don't understand how I could have been re-infected? I am also concerned that in 6 months time, the condition may have got much worse and will need more radical treatment than it would if it was to be treated now or in the next 3 months, instead of 6. Should I just get on with getting pregnant now? I am so worried that the chance to have a family will be taken away from me.

My gynecologist is an expert in this field and he seems to think there is every chance this 'inflammation' will clear up on its own without treatment. I am not convinced though, particularly with my history of CIN.
Has anyone else had recurring CIN? How many treatments will they give you before suggesting a hysterectomy?

I am so worried and can't think of anything else at the moment. On top of that, I have just lost my job and have had to move back home because of money worries, so feeling utterly depressed.

Can anyone share any similar experieneces? Thanks!! Sarahxx

Sarah Williams - had cone biopsy in 2001 for CIN2

CHESKINS

Hi Sarah,

Firstly, Welcome to Jo's... :) :)

To tell you the truth, I haven't got a clue about CIN l-ll-lll... I do understand about being scared though!!! There's lots of ladies on Jo's who will be able to help with what you are going through....

I just wanted to say hello.

I hope everything goes well for you at your next appointment. :shock:

keep in touch,
take care,
Caroline xxx

Sunflower

Hi Sarah,
Welcome to Jo's, you'll find lots of support and help here. The medical panel are great, you should send them a message with your questions.
Sorry to hear that you've been having such a hard time, I undertand how you feel and how hard it is to cope. Please try not to worry, please try to take comfort that your are in the system and being closely watched.

With regard to CIN, in Feb 04 I had a smear with CIN1 results, has another smear in Aug 04 with Cin1, had a colpscopy in Dec, LLETZ treatment to remove the cells in Feb 04, with Cin2 results, repeat smear in Aug 05 with CIN1 results and and scheduled for more LLETZ on Nov 29th : - ( I understand your concerns regarding childbirth, I have the same worries, my consultant has been great and has assurred me that the risks are low, as he will only be removing a small amount again, but I'm still worried that it will affect not only my ability to conceive but also my ability to give birth naturally.
I don't know many treatments they will give you before suggesting hysterectomy, another lady on this site had 3 LLETZ's treatments, from what I understand they don't consider hysterectomy or alike unless its cancer, CIN 1,2 and 3 are pre-cancerous cells and not cancer, however left untreated could over time develope into cancer.

The positive I can take from this is that its unlikely that I will get cancer as i'm being closely watched and treated as required.
I've never had HPV tests and my consultant hasn't mentioned it, from research I've done it seems that once you have it you always have it and just at certain times your immune system doesn't fight it off so it comes back, so try not to worry about this.

I hope this email helps in some way. Try to keep positive about it.
Feel free to email me at any time.
love
Amanda

Sarahlucy30

Hi Amanda,

Thanks so much for taking the time to reply. I'm sorry you've had such a bad time too - it must be really frustrating to have so many tests and treatment. I really hope your next treatment gets rid of it all and I'm sure it won't effect your fertility. There are loads of things they can do now anyway, like put a stitch in your cervix to secure the baby during pregnancy.

For me, it's not the treatment or tests that really bother me, but the not knowing and continual waiting for the next results etc. I am a worrier anyway, but it just seems to be on my mind ALL the time, which isn't good. It's always reassuring to hear from others who've been through it too - particularly those who've had several bouts of treatment. To be honest, I am fully expecting to have more treatment, as I'm sure the changes won't go back to normal on their own, particularly as I've had it before. Anyway, we'll see in 6 months time!

Interested to hear you've never been tested for HPV. I think once you've had CIN it's fair to assume you've had HPV. From what I've read, there seems to be divided opinion about how long HPV stays in your body. Some say it's there for life, but other things I've read say it will eventually clear your system, although they don't seem to know how long this takes. It's all a bit hazy. I'm just annoyed because I don't smoke, I eat well, I've been with my boyfriend for 8 years and we use condoms. So I don't see what else I can do!! Anyway, please stay in touch and let me know how your next treatment goes. I will have everything crossed for you!! Sarahxxx

Sarah Williams - had cone biopsy in 2001 for CIN2