Nightmare lletz treatment

Treatment for cell changes (abnormal cells)
1

Two days ago, i went in for lletz treatment which was very traumatic. The loop didnt seal the wound and i bled very heavily for about 45 mins while 2 colposcopist tried to use what they call balls to burn the wound closed. They kept saying it was normal but where very stressed and where running in and out of the room for different bits of new equiptment. At one point my cervix came out of the speculum and it was a panick to get hold of it again, where they had to use a Lot of pressure to keep it in place. The pain was awful, they gave me extra anasthetic 3 times, i felt like i was going to pass out. I was in a bit of a days afterwards and they made me stay on site afterwards to monitor the bleeding and fed me plenty of sugar. They didnt say much after except that the one lady would call me later to make sure i was ok. She didnt call me that day or since either. She gave me the number for emergiencies and said i need to go home and take it easy because id lost a lot of blood. I have a leaflet wich has her name on it and 10-12 weeks written on in pen but she didnt really say anything else. I had a big blood clot when i got home but no bleeding since. I think i have thrush now and i have a very dry vulva too. And awful back ache and pain in my pee pipes.

On top of all of that, the whole thing has confused me as to why ive even had it.

In 2021 i tested positive for hpv with no cell changes.

In 2022 i tested positive with cell changes. I had a colposcopy where they took a biopsy. But the results where inconclusive because the biopsy was inadequate. I had to go back in a year for a cloposcopy and the smear would be done there.

In febuary, i went for colposcopy. She couldnt see anything, didnt take a biopsy because there was no signs of hpv. She did my smear. She did the normal swab one and an extra brush one that goes inside the cervix entrance. I went home thinking, happy days, nothing wrong.

Then i get a phone call, my smear is showing high grade severe cell changes and i need lletz treatment. Wtf??

Then i get a letter. The biopsy results show cin3 and i need treatment. Again, wft? I didnt have a biopsy!!!

I called the hospital and they apologised and said theyve sent the wrong letter, i should ignore it but still do need the lletz due to smear result, even though colposcopy was fine.

So thats where im at now. 2 days since a very traumatic llets treatment that went wrong for an unknown reason!!!? (I did actually bleed a lot when i had the biopsy a year ago but somehow there wernt any notes about this!?l)

Im 35, i havent had any children yet and im just sat here stressing that all that burning could have ruined my cervix and chances of getting pregnant (chances are slim anyway due to thin uterine lining) and for not even good reason really?? I cant call them or my g.p coz its good friday and wont have any hope till tuesday now. Im all over the place emotionally, the whole experience has me shook right up. I cant stop crying or worrying.

Has anyone else had this kind of experience?

Im pretty sure its much more straight forward for most people and i have heard lots of positive stories of it being not nice but totally worth it. Im just struggling to see anything positive right now

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I’m so sorry this happened to you, it must have been really scary for you. I had a difficult LLETZ a few days ago and can totally empathise with you, although it sounds like you’ve really been through the wars.
The waiting and confusing communication is very stressful isn’t it. I ended up having my LLETZ with 2 days notice and verbally getting my colposcopy results at the appointment.

Could you maybe contact the clinic where you had your treatment and request a debrief of what happened on the day, and someone to go over the various results and letters with you?
In the meantime, we’re in the system now and will be monitored closely and looked after - this is definitely a positive.

I can hopefully offer you a little bit of reassurance with the fertility worries too - I asked the nurses about the risks of LLETZ to future pregnancy and they explained that whilst it does add a small amount of risk of miscarriage, this is very minimal. Something like only a 1 - 2% additional risk compared to someone who had not had this treatment, and we would be monitored and supported accordingly. I’m a similar age to you and hoping to start a family soon, you’re very much not alone with this.

In the meantime, sending hugs and it’s a good excuse to curl up with some telly and easter choc x

3

Hey, thank you for taking the time to reply. Im sorry you’ve had a tough experience too.

I will abserloutly call them on tuesday for some answers. Ill need to call the g.p too.

I was made aware of the small chance of complications with pregnancy for lletz, the reason im stressing is that the procedure went wrong. I had them burning away at my cervix for over 45 mins, wich isnt normal, and its the effect of that that is worrying, not so much the procedure itself.

Either way, thank you for your positivity, its very much appreciated.

I hope you have a nice easter and enjoy your chocolate

Xxx

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Good Morning Jelly…hope you are feeling a bit better today and im very sorry to hear your story and experience as its not something that any person should have to go through … you will gather strenght from this i believe as the experience will make you ask more questions and as Fern said you have a right to request a debrief and for this experience to be noted on your files …so my advice is to gather the courage to find your voice …this is a very rare occurence and should not deter anyone from having there checkups as at the end of the day we need to have this amazing screening program and its beneficial to all of us…

My own experience is very similar…although it is nearly 10 years ago i still dont like to talk about it or remember that day… my first ever smear resulted in cin 1,then on colposcopy it was found to be cin 3… the nurse had just come back from holidays and she still was in holiday mode and we were chatting about her time away which put me at ease at the time but i remember her lack of almost professionalism aswell as she had dropped a few things and needed help with others…
She said because thrme precancerous cells had spread that lletz needed to be performed to which i ageed and my husband was with me so i gathered strength and i agreed to proceed… unfortunately the area that she had numbed was not large enough and she lletzed an incorrect area of my cervix… i howled literally… and she kept apologising and cauterizing the area…i lost a lot of blood and the maddest thing was that i could see it all on the tv screen… que traumatic nightmares…
Finally i was allowed dress and return to the seat…she kept apologising and said that she had returned from holidays…
I was very very stunned,distressed and silent…
my husband was aswell as he had never witnessed anything like this before…
In the end,there was no clear margins and i had to have a biopsy and more cin 2 and cgin a couple of years later…

however the differnece this time was every single person i spoke to i made them aware of everything that happened and it was all written in my notes…and they could see the scar tissue formed in my cervix aswell so they were always extremely careful and compassionate…

I havent seen that nurse since and its funny as i still have her picture as they give you a little leaflet of the procedure that is supposed to tell you what treatment you received that day in the hospital…

Oh i developed an infection aswell 10 days after and had to go back as the would had opened and it had to be re cauterised and antibiotics given…I’d forgotten about that part…

I still continued in the service but on the low grade cgin finding they offered a watch and wait and there was no hpv present 6 months later so i got sent back to the public system and my 10 years in colposcopy came to an end…

Fast forward to 2022…
Started bleeding heavily,smear normal even though they only test fot hpv now so the cgin could still be there for all anyone knows…
and now im having a hysterectomy because of tumors found in cervix and they’re blocking bowel and bladder…my new oncology doc believes theyre not malignant but will only know for certain when he has removed it all which is in a few weeks…i have trust in the system but i do believe i should have been offered a hysterectomy after the cgin but we got there in the end…

Keep going and let us know how you get on when you speak to the team…a freedom of information request can be asked for aswell even if you have a copy for your own files…much love and light to you…

5

I just thought I’d add an update, since ive now had my results and asked a lot more questions…

So the reason i had the lletz procedue was due to the smear. The nurse told me that because that came back with severe abnormalities (severe high grade cell changes) they had decided to offer the treatment. She said that sometimes the cell changes can’t be seen in colposcopy, and due to them being able to see them 1 year previous (inconclusive biopsy) and then again in the smear, in my case they were pretty sure i would benefit from the procedure.

My results from the lab work after the lletz was CIN3 with no clear margins but due to me having so much diathermy, they just dont know if that would have burned away the remaining cells or not.

I have to return to colposcopy 6 months from the date of my lletz procedure, which they have given me a date for in october, where i will again have a smear.

I was also told that the cervix is very resiliant and will bounce back just fine from all the diathermy and not to worry about any lasting effects with fertility.

I hope this helps anyone going through anything similar, i did a lot of worrying and panicking and it just wasnt worth it, my sanity is much more important. I was wasting my days stressing about it all (more than 8 weeks for the results) and ive now just accepted that it is ongoing and all i can do is go to appointments. I didnt listen to 1 person who told me not to let it stress me out, in hindsight i wish id listened and gave myself the space to procces the trauma. It was like i needed the trauma validated by others. I validated it myself, eventually. It was a horrible experience and it was terifying to see so much blood but today im ok and looking after my mental health xxx

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Im sorry to hear the experience you are having & seems to be a common story…

In January this year 2023 I had an abnormal smear showing cin3, and had to wait till April to have a lletz procedure to the waiting list here in NZ which i think is ridiculous.

The lletz procedure itself was very traumatic, the doctor did not let me take a second to collect myself from crying so much, didnt care about the pain i was in & I was then left on a corridor crying/screaming in pain for 4 hours. She never checked on me & due to a long wait in ED i was sent home with no meds. I got an infection & was given strong antibitoics a week later after visiting my GP but she even was like i dont know what you want me to do…

Anyway i had a check up 6 week post lletz surgery with a OBGYN & no bleeding at this point just water/sticky dischare & my OS was healed & the OBGYN said everything was perfect… I was on top of the world at this point… 5 weeks ago I started brown bleeding spotting/lightly with some small clots & haven’t stopped.

I rang my GP & spoke to the nurse but had to have STI tests before she even sees me even though i haven’t even had sex since before the surgery, those tests came back negative (surprise surprsie). but there is a 3 week wait to see my GP as it is.

My question is is this normal to bleed for 5 weeks after lletz even though i did stop after 4/5 weeks? Is this a side effect of the procedure? Am I ever going to stop?