Recurring CIN3 and LLETZ

Cervical screening results
1

Hi all,

It's been a while since I've come to the forum for advice, but I found it extremely helpful the first time around, and unfortunately this time I'm driving myself insane. 

I had my first loop diarthermy in October 2011 after being diagnosed with CIN3. After this I had three 6 monthly smears, all of which came back clear. My final 6 month smear (before moving to 2 yearly) unfortunately sshowed CIN3 again. 

Again, I had loop diarthermy treatment for the 2nd time in August 2013. Since then I have been advised that the sample came back to show it wasn't clear, and yesterday had my 3rd loop diathermy in 2 years.

This time an internal scan was required to see how much of the cervix was left to work with, and was advised it was just under 2cm, half the size it should be/started out. I was also advised that other options may need to be considered should the cells recur. I am now freaking myself out at the possibility of having to go through any more treatment or alternatives. This time round was definitely the most difficult yet. 

Also, previously the cells have always been referred to as precancerous cells. Yesterday my consultant referred to 2mm of early cancerous cells. Is this the same thing, or a progression? Is anyone familiar with the change in terminology? 

I know everyone's cases are different, but im just wondering if anyone has been through a similar situation with the recurrences and treatment etc. 

Now that I'm back to the waiting game for results, my head is back in overdrive. I'm 27, with no kids, and no definitive decision on whether that will change in the future, but like any girl I like to know the option is there. I was given the contraceptive pill after my appointment yesterday, because 'we absolutely cannot risk me getting pregnant until this is resolved" which also doesn't fill me with confidence. 

Anyway I'm really just venting, and looking for some advice from others in similar situations. 

Sam xx

2

My heart goes out to you. 

I cannot offer any advice I am afraid, as I am in the waiting stages for the results of my CIN3 Loop Biopsy.

I can however sympathize with the pregnancy aspect though, I am 28 and have so far put off getting pregnant, not for lack of wanting them (as I do want them...desperately) but for the want to be in a bigger house and be married first. This "pre-cancerous" diagnoses has made me realise that life is too short and I don't want to put it off any longer.

If I am lucky enough to get a good result and a clear smear, I am going to try for a baby.

"Early stages" is the part you need to focus on, sounds like they have caught it and being able to offer you treatment for it is good news (even though it might not feel like that right now) - I hope someone on here can offer you some reassuring advice from there own experience. 

Good luck with your treatment and let us know how you get on

Tails xx

3

Thanks tails! It's just a bit of an information overload just now, but vague information at that if that makes sense. 

Just really frustrated that it seems never ending. 

I hope everything goes well with you're treatment and definitely wish u all the luck in the world on the baby front. At least u know what you want haha I'm just loaded with what if's lol! 

Ty again for ur message, I'm hoping the same about the support on here :) 

S xx

4

No probs hun, keep us updated and good luck xx

5

Because I didn't take much in other than more treatment this week, I called today for a bit more info on my results. 

TThe medical sec was really helpful, but said the doctor isn't comfortable speaking with me over the phone about it. So I've now to go in on Monday for a chat with a diff Dr, as mines goes on annual leave for 3wks today. Not really sure if this is normal protocol with regards to results, but defo still panicking. 

S x

6

Hi everyone, I am new to this forum (I came across this forum due to lack of info online in terms of recurrent CIN).

I am 37 years old and I was first diagnosed with CIN2 back in 2002 (after pap smear and confirmed with biopsy) and had LEETZ procedure done. The pap smears after that were on and off CIN1, so I was told to basically eat healthy and improve my immune system.

Then in 2005 had recurrent CIN2 (after pap and biopsy) and had cone biopsy under general anesthetic and the area effected was taken out.

After 9 years of on and off CIN1 detected via 6month regular pap screenings (the last one only 6 months ago) I did pap test a month ago and it showed CIN3. The doctor wanted to do biopsy but when I went for my appointment he did curettage instead (no explanation given). The result came back CIN1 with a note from the lab that not enough material was sent for testing, so I was called for another biopsy.

I went for biopsy, but then again the doctor complained he cannot perform biopsy since my cervix is relatively shortened and I have Cervical stenosis due to previous treatments, so he did curettage again. He was pretty unhappy on the spot since he expects the lab to give the same note about not enough material, but noted himself that since I haven’t had children he does not want to poke and probe and cut pieces of my cervix any further due to possible pregnancy complications.

Then I was given a prep talk on getting pregnant as soon as possible (he was like how much longer do you plan to wait – as it was my choice, to which I said I don’t even have a bf, for the past 4 years I’m single and don’t even have sexual intercourse, to which he was like, we’ll go get one since you might end up having yet another cone biopsy and then if you become pregnant even stitching of the cervix won’t be possible).

This was so unprofessional in my opinion, since I felt as all those bad relationships or asshole bfs were my fault, but I managed to collect myself and ask what are all the possibilities in my case.

He said that I might get more serious cervical stenosis after having 3rd procedure done, that might even block my menstruating, so I might need device to keep my cervix open, or if the result of the curettage comes back CIN3 I might need hysterectomy.

I can not even begin to describe how devastated I am. I seriously don’t know how to process all of this. If there is anyone with recurrent CIN and 3 procedures already done on their cervix, please give me some advice.

As much as I trusted this doctor up till now I cannot help disliking him, I don’t see the point of the second curettage he did today if he was already aware the result won’t be valid. I don’t know what to believe, how to proceed or what to expect.

Anyone?

Tnx.

Age: 37. No kids (but would love to have at least one)

2002 CIN 2 LEETZ

2005 CIN 2 Cone biopsy

2013 CIN 3 (waiting for curretage results)

Hppy New Year everyone...

 

7

Hi everyone, I am new to this forum (I came across this forum due to lack of info online in terms of recurrent CIN).

I am 37 years old and I was first diagnosed with CIN2 back in 2002 (after pap smear and confirmed with biopsy) and had LEETZ procedure done. The pap smears after that were on and off CIN1, so I was told to basically eat healthy and improve my immune system.

Then in 2005 had recurrent CIN2 (after pap and biopsy) and had cone biopsy under general anesthetic and the area effected was taken out.

After 9 years of on and off CIN1 detected via 6month regular pap screenings (the last one only 6 months ago) I did pap test a month ago and it showed CIN3. The doctor wanted to do biopsy but when I went for my appointment he did curettage instead (no explanation given). The result came back CIN1 with a note from the lab that not enough material was sent for testing, so I was called for another biopsy.

I went for biopsy, but then again the doctor complained he cannot perform biopsy since my cervix is relatively shortened and I have Cervical stenosis due to previous treatments, so he did curettage again. He was pretty unhappy on the spot since he expects the lab to give the same note about not enough material, but noted himself that since I haven’t had children he does not want to poke and probe and cut pieces of my cervix any further due to possible pregnancy complications.

Then I was given a prep talk on getting pregnant as soon as possible (he was like how much longer do you plan to wait – as it was my choice, to which I said I don’t even have a bf, for the past 4 years I’m single and don’t even have sexual intercourse, to which he was like, we’ll go get one since you might end up having yet another cone biopsy and then if you become pregnant even stitching of the cervix won’t be possible).

This was so unprofessional in my opinion, since I felt as all those bad relationships or asshole bfs were my fault, but I managed to collect myself and ask what are all the possibilities in my case.

He said that I might get more serious cervical stenosis after having 3rd procedure done, that might even block my menstruating, so I might need device to keep my cervix open, or if the result of the curettage comes back CIN3 I might need hysterectomy.

I can not even begin to describe how devastated I am. I seriously don’t know how to process all of this. If there is anyone with recurrent CIN and 3 procedures already done on their cervix, please give me some advice.

As much as I trusted this doctor up till now I cannot help disliking him, I don’t see the point of the second curettage he did today if he was already aware the result won’t be valid. I don’t know what to believe, how to proceed or what to expect.

Anyone?

Tnx.

Age: 37. No kids (but would love to have at least one)

2002 CIN 2 LEETZ

2005 CIN 2 Cone biopsy

2013 CIN 3 (waiting for curretage results)

Hppy New Year everyone...