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LLETZ CGIN My experience

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KultKoala
LLETZ CGIN My experience

Not asking any questions of anybody.  Just wanted to tell my story for any women in the same position, as CGIN is less common and there is less information.  However if you feel you have something to contribute to the thread or want to ask me a question please feel free to do so. 

My partner and I were trying to conceive; undergoing fertility treatment with Letrozole.  On the 12/12/20 I went for a smear test.  I got the results of the smear test on the 12/01/21 when my GP surgery called me and told me they suspected I may have cancer and were sending me for a colposcopy.  That they recommended I attend as I would need to have cells removed. 

I spent the evening worrying about the possibility of cancer and then phoned my GP surgery in the morning asking them to clarify my smear results.  The Ancillary Nurse Practitioner called me back and reassured me that the cells were pre cancerous but that I did have Cervical Glandular Intra epithelial Neoplasia (CGIN) and again that it was important to attend my colposcopy appointment.  

I received the letter through the post inciting me to my colposcopy appointment on the 26/01/21.  I booked the day off work and made sure my partner wss also free to take me and waited nervously.  On the 25th, the day before my appointment I got a phone call from a private number.  They had cancelled my appointment due to staffing issues and didn't know when they would next get me in.  I expressed my concern that it would not be withing the 2 week wait period and the lady reassured me they would still get me in within the 2 week wait.  

The following morning I had a call from the clinic asking me to come in the next day.  

On the day of my appointment I got up and sorted an early morning urine sample as requested.  Once at the hospital I was surprised at the number of ladies in the waiting area given the pandemic situation.  After being there around 20 mins I was asked into a side room to answer some questions; name, address, date of birth, urine sample submitted.  I then returned to the waiting area to find no chairs.  I said I didn't mind standing but the receptionist obviously took umbrance to me making the clinic look untidy and ultimately found me a chair. 

A good hour later (they were running late as the nurses are running two clinics at 2 hospitals and one of their cars broke down) I was invited in to the colposcopy room.  The procedure was explained to me and diagrams drawn.  I was asked whether I had children.  They already knew I was under fertility treatment and the consultant explained he would do what he could to minimise the damage to my cervix, but also that in some countries like France, their advice would be to go to full hysterectomy for the cell changes I have.  He said he would use a size 12 loop and remove tissue to around 1cm depth.  I was surprised they were not using a needle lettz and he explained that he thought he wojld be able to remove enough glandular cells with the loop by going between 7mm and 1cm depth.  He also mentioned that sometimes the histology comes back with clear margins and all is fine, sometimes he will need to invite people back for a further procedure and sometimes they will find cancerous cells.  

To prepare for the procedure I removed my trousers and pants and donned a lovely hospital gown.  I was allowed to take my phone into the procedure room.  Sat down on the bed, legs up in the stirrups, digital examination and palpatation, presumably to check for any pain or obvious abnormalities.  Speculum was then inserted and acetic acid wiped across my cervix followed by iodine.  A cold patch was attached to my leg for my safety apparently (not really sure what this is for but it's not unpleasant) I then had anesthetic injected in two different places in my cervix which stung a little but the nurse kindly held my hand (something I wasn't expecting due to covid but was exceptionally grateful for) LLETZ procedure was then carried out following a brief pause for the anesthetic to work properly. I honestly didn't feel a lot.  They then said they would scab the wound.  I presume this means cauterise.  I did feel a weird pulling pressure whilst this was carried out.  It was an odd sensation but not painful, just uncomfortable.  

I was then asked to remain lying for a few minutes.  I took this opportunity to have a chat with the nurse and retrieve my phone and message the other half to let him know it was over and done with.  I was then allowed to sit up for a couple of minutes before bekng allowed to stand and return to my clothes.  The consultant was dictating his letter as I was dressing and I overheard him saying mild endocervical changes visible.  He also told me that as I have CGIN that the hystology will be discussed at an MDT meeting.  I should know the results in around 4 weeks.  

 

 

 

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
Lemon Lavender

Thanks lovely. Really interesting to see someone else's experience.

 

Sending you much love for good results and a pregnancy later too (((hugs))) 💖

1/01/21 - routine smear (previous smears clear). 

8 days later - letter HPV Positive + high grade severe dyskaryosis. Colposcopy letter arrived 6 days later. 

 26/01/21 - colposcopy appointment, LLETZ - biopsies, Diathermy Ablation

18/02/21 - 23 days after colposcopy. CIN 3. Margins not clear. To be discussed at MDT on 16/3/21. Await results. 

Detailed account of my experience can be found on this thread: https://www.jostrust.org.uk/forum/cervical-screening-smear-test/what-were-your-waiting-times

KultKoala

You're welcome Lemon Lavender.  I'm feeling a bit more positive about it all.  Much love to you too.  I will be following your story and hoping for a good outcome for you too ((hugs back)) 💜

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
Mabel

Hi my daughter has been diagnosised as the Same she is waiting lletz , I'm terrified as she has 8 month old twins and I'm worried she may need a hysterectomy , just wondered how u are 

KultKoala

Sorry Mabel, 

I somehow missed this message. I've just got off the phone to the consultant who has told me i have clear lateral margins but the endocervical margins are unclear. To be discussed at MDT on the 19/2/21.  I have told him I would rather have clear margins before we go ahead and try to conceive but he is somewhat concerned about conserving the functioning of my cervix.  I will be scheduled for a further LLETZ to try and attain clear margins. If your daughter needs someone to talk to who is going through the same thing please point her in my direction. I would be happy to speak with her.  All the best xx

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
Lemon Lavender

Thank you. 💖 💖 💖 

1/01/21 - routine smear (previous smears clear). 

8 days later - letter HPV Positive + high grade severe dyskaryosis. Colposcopy letter arrived 6 days later. 

 26/01/21 - colposcopy appointment, LLETZ - biopsies, Diathermy Ablation

18/02/21 - 23 days after colposcopy. CIN 3. Margins not clear. To be discussed at MDT on 16/3/21. Await results. 

Detailed account of my experience can be found on this thread: https://www.jostrust.org.uk/forum/cervical-screening-smear-test/what-were-your-waiting-times

KultKoala

Update - Received through the post today a letter confirming the histology showing High Grade CGIN.  No mention of whether or not they got clear margins and my case has not been discussed at MDT yet.  

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
Lemon Lavender

Wow Kult, 

 

So does your letter mention anything about further appointments or MDT discussion and contact?

 

I'm so pleased they called you and I really do hope everything is okay xxx

1/01/21 - routine smear (previous smears clear). 

8 days later - letter HPV Positive + high grade severe dyskaryosis. Colposcopy letter arrived 6 days later. 

 26/01/21 - colposcopy appointment, LLETZ - biopsies, Diathermy Ablation

18/02/21 - 23 days after colposcopy. CIN 3. Margins not clear. To be discussed at MDT on 16/3/21. Await results. 

Detailed account of my experience can be found on this thread: https://www.jostrust.org.uk/forum/cervical-screening-smear-test/what-were-your-waiting-times

KultKoala

Hey L,

I spoke to my consultant tonight. He let me know that the tissue they removed from my cervix was 9 x 9 x 13 and that they did get clear lateral margins but not got a clear endocervical margin.  Those pesky cells are higher up.  MDT is this Friday 19/2/21 and he will update me further by letter after this with a management plan. I asked him whether he thought I would need another procedure and he said he thought I would but he was concerned about preserving the functionality of my cervix given that myself and my partner were trying to conceive. I told him I would rather try and achieve clear margins before trying for a baby so he will take that into consideration but he had to point out the risks of pre term labour to me. So fingers crossed a second procedure will get it all. 

How are you getting on?  Have you heard anything yet? Hope you are well and are healing xxx

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
Woody87

Thankyou for sharing your story

I've recently had my smear results of cgin, spoke to 2 GPS at my practice, one said cancerous, one said no way of knowing until the colposcopy (on Monday)

Absolutely up in arms about it, can't eat, sleep....you know I'm sure!

How are things with you now?

More Information

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