Not sure if im posting in the correct place sory.
So my story started 2 years ago.
1st smeer showed CIN 3 I went on to have biopsys and then lletz treatment. After my follow uo smeer my results came back again abnormal CIN 3 and high risk HPV i had more biopsys and a deeper LLETZ under general due to the position of my cervix.
So on to my third smeer, i have just had my results back and yet again abnormal and high risk HPV. I am so upset just want this whole thing to end i feel completely lost with the whole system.
Has anyone had re accuring abnormal cells and HPV?
What will the next course of action be?
Surely i cant be expected to keep doing this every few months. The waiting times in between are just horrible.
I know there are people in worse situation so i been bad for going on about it but just beyond fed up now.
Thank you
xx
Hi
I had an abnormal smear last july, i had a biopsy done in september to which confirm stage 1a1 cervical cancer.
I had my 1st Lletz in September, results confirmed CIN3 was left behind, had another Lletz procedure 4 weeks later. Still signs of abnormal pre cancerous cells but they had removed a very large portion of my cervix.
In January i had another smear test which came back clear but i pushed for another Lletz regarding the fact a few months prior they told me i still had precancerous cells.
In june i had my final Lletz which came back completely clear, but unfortunately i only have an extremely small amount of cervix left.
I dont know if this would be the same for you as they may have taken a bit less of your cervix away than mine (sounds strange trying to compare cervix sizes lol.) but they said if it was to come back they would have to discuss another way of removing it, which they didnt clarify specifics.
Maybe call one of the gynae/oncology nurses or consultant whom will be able to give you a bit more information. (as i was given a card with nurses details on to call for any questions.)
Sorry if its not too helpful, wanted to let you know your not alone! xxx
Hi
Thank you so much for your reply.
Just think it’s nice really to talk to someone who is going or has been through the same.
I am sorry to hear of your diagnosis but happy to hear you have since had the all clear. Finger crossed it does not return.
I’m not sure on the size now but surly then can only take chunks away for so long lol. Only thing I was told with my last Lletz is that the took a bigger chunk than normal.
My appointment is in about 3 weeks’ time so will discuss options with them. Just horrible having to go through this every few months, and all the worry In between appointments and waiting for results is just horrible.
xx
I'm in a similar position. Im 29, no children and ive Just had my third lletz, I've also had 3 punch biospys. Never had a clear smear in 5 years. Constant high risk hpv. Currently waiting on lletz biopsy results. Consultant said this time they would discuss future treatment in an mdt, as my cervix is to scarred to do a smear. I've also had 3 dilatation of the cervix as it is completely stenosis scared over. I completely understand your anxiety. I feel exactly the same.
Im sorry to here your in a similar position. I have also had 3 punch biopsys. Due back on the 29th of this month for more. Its the waiting in between that gets me, its such a long process. Im done with the constant worry that it will have progessed in to somethg else. I have 3 children so my family is now complete, so hoping they will consider other treatment options when i go back.
How long have you been waiting so far for your results?
x
Had a lletz last Tuesday, 4 weeks wait for the results. Although I'm already looking at the post and jumping at the phone ringing.
You read so much saying how successful lletz is, and yet I've had 3. And 3 punch.
Yes the waiting is the worst. Seems so long! And it's been a rollercoaster over the last 5 years.
Have they mentioned a limit on treatment to you?
I know i just wait for the post every day its horriblr waiting for that letter. 4 weeks is good though im always told up to 10 weeks and its usually not far off that time.
Definty a big rollercoster fingers crossed your results finally come back clear this time. Have the mentioned to you what they will do if still not clear?
Surely there is only so much cervix they can cut away. I was told last time the took a large ammout yet im still showing abnormal. I was also told that alternative treatment is discussed after 2-3 failed attempts of removing the cells.
x
They mentioned partical/ full hysterectomy. Although I haven't been able to get pregnant dispite 4 years of trying. So neither option is ideal, but I'm.swaying towards partial to save my health. It seems with every procedure I have done the pain gets worse. It's nice to talk to some one who's going through similar to me, as it always seems after one lletz most ladies go on to have normal smears. Which makes me feel more stressed and worried about constant treatment.
When is it you have to go back is this for discussion or further treatment?
Yes the same was mentioned to me as well treatment wise ,but they wouldnt really discuss last time as they wanted to try another lletz.
Ohh no im sorry to here your having problems concieving that cant be easy on top of going through all this as well. Yes it really is, iv been looking at loads of forums and like you say its hard to find many who continue to get abnormal results.
Its horrible its just constand worry and waiting. I also agree pain wise and bleeding seems worse as well for me.
Im back on tuesday at 4.15 to colposcopy to speak to them regarding results. I have a feeling they will want more biopsys but im so done with them. I was told last time treatment options would be discussed so fingers crossed.
xx
Is this results of a smear or a lletz biopsy? Have you had high risk hpv apso at each smear? Xx
Hello, I'm also 1 of the few whose abnormal cells and HPV are recurring. As you say there is very little information about recurring abnormalities and treatment that I have been able to find. The longer the wait, the more questions and symptoms I have. I was 1st diagnosed with CIN1 & HPV in January 2018, due to the low grade changes no treatment was given until after 2nd colposcopy in January 2019, following a punch biopsy. The follow up smear test inJuly 2019 came back with same HPV & CIN1 result. Colposcopy and punch biopsy result in September 2019 has come back with CIN2 and I am now waiting for LLETZ on 4/11/19. What doesn't make sense is if 9/10 women don't have recurring abnormalities why isn't there more effective methods of treatment to prevent having to keep being on this emotional roller coaster? Best wishes to all x
It just to discuss results from my last smear. Yeah every time iv been high risk HPV as well.
Sorry for my slow replys.
Had my appountment today and had more punch biopsys done, so just have to sit and wait for my results.
I completely agree Allison its so hard having to go through theses tests so often. Sorry to here your also going through the same.
