I wonder if anyone else has experienced the same?
I had an abnormal smear result in March 21, showing severe dyskaryosis. I was booked in for LLETZ procedure and abnormal cells were seen at the colposcopy following the acetic acid test. The histology result did not d as how any abnormal cells, so I was invited to another LLETZ procedure and this time they went higher up. Again the histology did not d as how any abnormal cells. I have now been recommended to have a laparoscopic hysterectomy. Would it not be possible that the LLETZ procedure removed all the abnormal cells and that is why my test results have been normal? It seems a very drastic thing to offer a hysterectomy when there have been no abnormal cells detected on histology. Has anyone else had the same quandary?
Dear Mel,
I donât have any experience of this situation, but I did not want to simply pass you by. I really think you need to be able to talk to someone about this and if appropriate get a second opinion. This is because it seems no one has taken the trouble to make sure you understand what is going on and why they are making the decisions they are. I THINK from what youâve said that they are saying the abnormal cells are located past the boundary of the LLETZ procedures - further up into the cervical canal - they will be looking in the histology for a mass of abnormal cells, which the colposcopy says are definitely there, with âclear marginsâ around them, to be sure they have got everything abnormal. This is not happening.
There is an âAsk the expertâ option on the Joâs Trust main page: https://www.jostrust.org.uk/get-support
It might be a good idea to have a chat with someone about your situation and what youâve been told.
X
Thank you Jacks133 I have taken your advise and sent a message to the expert on this forum.
I had a similar experience. I had a Lletz treatment as I had stage 3 CIN and CGIN and the results came back clear. They left me 6 months and my smear showed I still had stage 3. I asked why they wouldnât have shown up in my first results and I asked if they had got my results mixed up with someone else. Iâve had another Lletz since then and theyâre still there. Iâm due to go in for my 3rd in 2 weeks (I donât have much of my cervix left) so hopefully they get everything this time. They said that theyâre not willing to give me a hysterectomy as Iâm only 38 and donât have any family. I donât know what the options are if my 3rd treatment isnât successful. Iâm hoping to find out soon. I hope youâre okay x
@Mel
Iâm curious what the experts said. Iâm in similar situation. Have had negative tests for HPV and no abnormal cells for seven years now but am recommended a hysterectomy. Doesnât make sense to me either but maybe itâs like what @Jacks133 wrote.
Tnt1 - you couldnât be recommended a hysterectomy without having any problems. Please, like Mel, get on to your health care professional and ask them to explain exactly what the situation is and why they want to do a hysterectomy. If you donât understand what they are saying (sometimes they use language that frankly sounds like a code!) tell them you donât get it and ask them to explain again. No woman should be having gynae procedures without knowing exactly why and being happy that the right course is being taken. X
@Jacks133 thanks for responding. Itâs due to histology of ASGUS and HPV positive 7 years ago.
What Iâm unsure of is the hysterectomy now having had normal paps, neg HPV and ECC every six months for past 7 years. Doctors want to be safe? Iâm scared of the surgery.
Quite - if you have normal paps, neg HPV then there appears no reason - so there must be something else thatâs an issue. Please talk to your health care professionals. You must be happy with any course of action taken on your body.
Nothing else. Just the history of abnormal glandular cells and HPV 18 which Is the reason for the recommendation for hysterectomy now that Iâm done with kids. Been through the LEEP and cone and colpos which seems to have âclearedâ everything but the oncologists still have this recommendation. Itâs the same guidance from the ASCCP. But really want to know if others have the same recommendation for hysterectomy in similar situation. Maybe itâs a difference in care and medical treatment/recommendations in the US versus UK? I am in the US and just scared of the recovery and if itâs the choice I want or just take the chance and wait and see if i develop anything else. Thanks for listening.