Returning abnormalities. How many times can you have LLETZ?

Not sure if im looking for advice but just feel i needed to write down the thoughts in my head somewhere...

Smear around 3 years ago found abnormalities and HPV, had LLETZ and was CIN1 but on repeat colposcopy 6 months later they found it hadnt all been removed so had LLETZ again (CIN1 again). Follow up colposcop all was clear. Been bleeding irregulary for 6 months so have had trouble attending smear as was always too much blood for them to be able to take a clear sample. Anyway, smear done a week ago, got a phone call yesterday (Friday) from hospital to say i need to go in as an emergency appointment which theyve booked for Monday so only a weekend wait, the letter theyve sent says theyve detceted severe dyskarioris/cell changes. Im having my consultation and treatment all done on Monday so there will be no waiting.

Feel as though whatever happens Monday that this is going to keep happening. I know im being negative and that doesnt hep but i just feel frustrated that they removed it all last time at only CIN1 and now its not only come back, it is presumably further along the cell changes stage as it it is classed as a higher grade. How many times can they preform a LLETZ before they look at other treatment options? 

Am currently doing exams at university (mature student) and raising my 2 year old son as a single parent, feel like i need a break :(

Hi,

hope your ok it's awful it just feels like it's a vicious circle doesn't it?!

I've just had my 2nd lletz last Tuesday. I tried to discuss the option of hysterectomy (as I have finished my family) but the consultant said that they will not consider different treatment till at least 3rd lletz ☹️ 

Ive always had normal smears up until last august had cin 3 told to come black for test of cure and cin 3 is back only 6 months on. Waiting for results now. All she said was it's a large area and good luck, now I'm on edge why did she need to say good luck, I feel like I might need it now lol 

Its so frustrating all the waiting and worrying really is awful! 

Thanks for replying Sian, hope you dont have a long wait for your results. Im sure she didnt mean anythig by what she said but as someone in the healthcare profession she could have chosen her words a little more wisely. Please do let me know how you get on once your results are back.

I guess i wont know anymore until tomorrow, im just very glad i havnt had to wait too long between my smear results and getting a colposcopy appointment. i naively assumed that when i had my last lot of treatment that it would all be done with but 3 years later im in the same position again. This will be my third LLETZ (if thats what they do tomorrow) so i will definately ask them tomorrow what my options are after this. I would imagine theres not going to much cervix left to take way if they keep going. Luckily my appointment is in the morning so its not a day of waiting around. x

No probs, 

hopefully you'll feel abit better after the appointment and have some more information. The consultant did say that they will keep removing cervix until they can't take anymore. How were your last 2 lletz? Have you found them more uncomfortable the more you've had at appointment and after? I'm glad you've got a morning appointment nothing worse than waiting around all day. You'll have to let me know how you get on. I know it was really rubbish if her to say probably meant nothing by it lol I just read into things too much. Hopefully results are sooner rather than later all this waiting round really is making me anxious Xxx

My appointment was really quick this morning, im so plased with how effiicient they were. Cutting a long story short, he wasnt sure what he could do until he looked but he did a final LLETZ and i will get my results as an urgency so should be 7-10 days. If that shows anything he doesnt like or if after 6 months i show signs of returning cell abnormalities i have to have a hysterectomy as he has no more cervix left to play with so to speak. So ive still got to play the waiting game but he seemed hopeful hes got the whole lot of abnormal cells out with this treatment. Fingers Crossed.

The treatment definitely wasnt as bad as last time, i dont think so anyway. Maybe its because i have an understanding of what was going to happen so i was more prepared. Its not exactly my idea of a fun morning but i found eveyone very supportive and informative and i just breathed through any discomfort or tried to distract myself by talking to the nurse. x

Aww that's great that they are rushing through at least they are on the ball. How do you feel about the prospect of a hysterectomy? Glad it went well! The nurses are lovely who do them and make you feel at ease. How are you feeling today? This time mine has been so much worse from lletz to after just more painful and more discomfort. Hoping this will ease off soon xxx

Hi guys, not sure if you can help at all.. but I’ve had 2 lletz treatments already.. have never had a clear smear and with high risk HPV! I had my 6 month check up following my last lletz treatment and have abnormal cells again and reffered back to coloposcopy. I’m just worried how many more LLETZ I can I have as I have no children yet And have just turned 30. 

 

if anyone has any experience or info they can share it would be greatly apprexisted as feeling quite upset and anxious this morning 

 

thanks 

Hi KB.

I am in the same boat as you right now. I am about to have my 2nd LLETZ treatment in 4 years and I am worried. 

My first was in the UK and now I live in Canada, I'm not sure they explain things as well here. 

2014 UK - first result abnormal, colposcopy high grade and HPV detected. LLETZ treatment done.

2015/2016 Follow up results were abnormal but low grade. (Common after treatment)

2017 (CANADA) - normal, no need for a pap test for 1 year.

2018 (Canada) - abnormal undetermined result - colposcopy booked.

2019 - colposcopy determined high grade and LLETZ needed.

 

I am worried how within a year it can get that bad that quickly. Was I misdiagnosed? 

Also, will i forever be affected by HPV high grade as my body clearly can't fight it. If so, will i always need LLETZ treatment regularly, and how many can you have?

I am worried about future pregnancies if this is the case, and whether the gardisil vaccine is even worth the $700 if it can't cure it?

Any advice please help.

Am also in a similar situation, I had my letz 6 months ago. 

Return smear detected abnormal cells again, colposcopy needed. Am awaiting my appointment. 

So this will be possibly 2 letz in the space of a year. Does anyone know how many they are prepared to do before they do a hysterectomy?. Or does it depend on how much cervix they take each time?. 

Sorry I might sound stupid but I have absolutely no clue