Second LLETZ for CGIN cells, 8 weeks after the first LLETZ. Feeling sad and deflated

Treatment for cell changes (abnormal cells)
#1

Hi there lovely ladies,
I just had a follow-up appointment with the results from my first LLETZ. The consultant confirmed what my smear suggested, I have CGIN but the margins from the first LLETZ are not clear so I will need a second LLETZ, which is booked for 8 weeks after my first LLETZ.

The doctor immediately wanted to know if I had completed my family, and I reminded him that no, we had just started TTC when this is all started with my smear results. I am 39 years old. I asked him that if I had completed my family, would he recommend a hysterectomy, and he replied yes.

He mentioned wanting to do an ultrasound scan, and I wonder why? I was in shock of having to do a second LLETZ so I did not ask all the questions.

He mentioned doing a “conisation” using a Fischer cone and did not actually use the term LLETZ. He used a Fischer cone in the first LLETZ.

He confirmed that my risk of miscarriage and premature birth would be higher with this second procedure, but that if I were pregnant after the second procedure, they would measure my cervix and maybe do a cerclage.

He looked at my cervix and said that I wasn’t entirely healed after my first LLETZ (it has been exactly four weeks) . The reason for doing the second LLETZ in two weeks is to allow for my cervix to continue healing, but also not wait too long either, to accelerate this process so that we can try conceiving soon after this second procedure as, with my age, time is of the essence.

After looking at my cervix, he said he was happy to do the second procedure again with local anaesthesia vs, general (the first one was local anaesthesia) as apparently I still had a lot of visible cervix to excise.

I am incredibly deflated to have to go through all of this again, I was in sooooo much pain after the procedure, and the waiting for the results is horrible, especially with glandular changes vs CIN.

I also am concerned about fertility, and also feel like I will never be completely reassured that even if the margins after the second procedure are clear, that I might still have residual CGIN (because of skip lesions) and that during the time of trying to conceive and eventual pregnancy, it might turn into cancer. Today, trying to conceive could not be further from my priority, but I still feel terrified of not being able to get rid of it all, and equally for me to not be able to have a child.

Thank you so much for reading my story. I would love to hear about women who have had a repeat LLETZ (or a second procedure) due to unclear margins with CGIN. What were the results after the second procedure ? (good and bad, do not hesitate to share your story even if the outcome wasn’t good…) Was your recovery worse than with the first procedure? And anything regarding fertility after a second LLETZ with glandular changes…

Thank you so much for your help. xx

#2

Hi, I’m not quite at the stage you’re at yet as I have been called in tomorrow to receive my results. The consultant confirmed CGIN based on my smear results so I’m not sure what the consultant is going to discuss tomorrow. Just wanted to wish you luck for your second procedure and hope it is successful for you x

#3

Hi there,
thank you for replying. I am so sorry that you have to have a follow-up appointment, please keep me informed of your appointment tomorrow. Do you have children, is your family completed? Best of luck for tomorrow, massive virtual hug. xx

#4

I will do thank you. It all feels very overwhelming and I’m dreading what may be discussed tomorrow. They said they would write to me with my results but instead I received a call on Tuesday asking me to go in tomorrow so I’m assuming it’s not good news.
We have 2 children, age 4 and 2 and although we had always said never say never to another, we have agreed no more as I’ve been told I will be high risk for miscarriage and pre term labour with future pregnancies.
Have they confirmed a date for your next procedure? Sending you a big virtual hug too! X

#5

Dear Looby, I can understand the dread when you expected your results to be in writing and now a face to face consultation is needed. Make sure you write questions down as you may be too much in shock to ask questions - I would suggest asking questions relating to the possible diagnosis of CC or to the possible diagnosis of having to do a repeat LLETZ.
Thankfully you already have two children, that is so great.
Yes, my next procedure is on the 9th of July.
big big virtual hugs and best of luck for tomorrow xxxx

#6

Hi Clairette

I think I am in a similar boat at yourself, I have CGIN & CIN3. CGIN with unclear margins from 1st Lletz even though they said they took more than normal to provent further treatment being needed. Booked in for my 2nd Lletz in 5 weeks. I have a 18 month baby, always hoped to have another, so fingers crossed I can do it again. I hope all goes well with your appointment, please let me know how it goes

X

#7

Hi I had 2 Lletz within 8 weeks. January I went for my smear 10 days later I had a letter to show that it was severe cell changes and high riskHPV (I had just tested positive for covid as well,). The hospital called and offered me a colposcopy appointment a few days later but had to turn it down because of Covid but I had an appointment 2 weeks later. The doctor tried to do it with a local anasethic however I bled so she decided she wanted to do it under a general so they did it a week later. Then I had the letter to say they didn’t get clear margins but it wasn’t cancer but there was a lot of precancerous cells. So I would need another Lletz. Again they did this under general anasethic (which I was happy with as a bit of me thought at least if I am asleep they can have a good go and get it all out!). The doctor who spoke to me before did indicate that by having the second Lletz it maybe difficult to keep a pregnancy and if they don’t get everything this time it could be a hysterectomy. I waited 8 weeks for the results from the MDT meeting and unfortunately they haven’t been able to get all the cells. I have an appointment onTuesday to see the doctor to discuss - the letter says they don’t have to do further treatment however it’s an option that they want to discuss or another option is to have a repeat a smear in 6 months. I am sorry I can’t share a more positive story. My situation is a bit different as I am 45 and already have a 20 year daughter. I hope you get all the support and guidance you need to make your decision x

#8

Hi Linf,

Thank you for your reply. I am so sorry you have to go through with this again too. How was your recovery for the first LLETZ? Fingers crossed that your second LLETZ goes well and that you will be able to have a second child in the future xx

#9

Hi Claire,
Thank you for sharing your honest story, it makes me feel less alone. I also have high risk HPV, HPV 16…

I am so so sorry that they weren’t able to get clear margins the second time round and that you are facing such a difficult decision now. Let me know how your appointment goes on Tuesday. I also hope that you have all the support and help to make your next decision, whether it is a hysterectomy or a colposcopy and smear in 6 months. Let me know what they recommend xx Best of luck xx

#10

My recovery was ok … nothing too out of the ordinary just felt disgusting for 2 weeks, not really looking forward to that again :confused: they did the first with local and doing the second local too (which I’m happy with)

You too! It’s nice to read about people having to have a second Lletz as not much information on that online or in leaflets

X

#11

Unfortunately not good news for me. My biopsy came back and I have CC so I’ve had an MRI and chest X-Ray today and the results will be discussed at the MDT meeting on Monday. The McMillan nurse is going to call me with the outcome of the meeting and discuss further treatment. Hope you’re doing okay! Xxx

#12

Oh no dear Looby09, I am so sorry to hear your news. You must be in quite a shock. I guess it’s good that you had your scans done immediately, I hope you won’t have to wait too long for your results and the next steps. I hope you feel you have the support you need, in the team of nurse/oncologist, your friends and family and the other group on this forum for cc diagnosis, they are a special bunch of ladies on there …. Best of luck for the rest of your journey and I’m keeping my fingers crossed that the care you’ll receive will be the best for you xxx