Advised to get hysterectomy after negative smear as audit was done and my data pulled!

Hi All, Have never been on a forum before, but needing support and advice…

Im a 31 year old and mother of one to a four year old boy.

I had a smear carried out September this year, and consequently received a normal result and was given my appt in post to return the following year (i get monitored every year after having lletz in 2013)

On 26th october just 4 weeks after this, I received a letter asking me to go in two weeks later (5/11/15) as a quality control audit had been carried out in the lab, and my data was randomly pulled and audited, and the pathologist seen some cells from the smear that he was concerned with.

I was extrememely worried and confused, and went along to my appt. They never told me to bring anyone but I knew something was wrong, hence I took my partner.

The consultant that has been “looking after me” for the last 6 years sat down and could not look me in the eye and looked as if she was going to burst into tears. She told me there was no other option than me having to have a hysterectomy after her and a few other consultants discussing my case. I was bamboozled to say the least. How can they have a negative smear, but run an audit and see something that was of such great concern that I need a hysterectomy?!

They advised that the cells were abnormal high up in the cervix canal and that they dont think I have cancer but to ensure there is no presence of cancer in the womb currently and to ensure i dont get it in future, then best thing to do is to take the womb out.

I insisted on another biopsy - they advised me at this point that the top half of my cerviz was already gone and it would be difficult to get anything, at this point I am in shock, no one ever explained to me the top half of my cervix was gone (this maybe answers why ive not been successful in falling pregnant)!!! I insist on them trying to take something more out to do biopsy as i think its a bit severe to take my womb out based on cells from a smear. they cancelled the surgery they were planning on 1/12/15 and instead do lletz and manage to get a bit out to biopsy.

Have received results back just last week and it has came back with CGIN 4 but clear margins on the outside, and advise is stronger than before to get hysterctomy

I had a private MRI two days ago - doctor says they look very re-assuring.

I am so confused… I wanted another child and I feel that they have done something wrong here and are trying to clear it up and get rid of it fast.

Has anyone been in same position and not opted for hysterectomy and tried for another baby first?

Hi, I've not been in the same position but just wanted to give you my support as it sounds as though you're having an incredibly rough time. You mention that you had an MRI done privately - are you able to see a consultant privately to go through it all to get a second opinion? Not to be OTT but could you maybe ask for a copy of your notes or the letters from the hospital where you had your lletz to your gp which might clarify a few points? You deserve some answers so keep at it if that's what you want. Let us know how you get on, in the meantime take care x

Hi Kaz81

 

that is very good advice and exactly what I plan on doing. I'm so confused. Thanks very much. X