Frustrated and overwhelmed

Firstly, I'm not even entirely sure this is the right part of the forum to be posting, but it seemed the most accurate... and secondly, sorry I fear this may be a bit of a rant. 

Previously, I was diagnosed with CIN3 and treated with lletz, subsequently a couple of years later I was diagnosed with Stage 1A and given a further two rounds of lletz, this was in 2013. From here I have clear smears repeately, up until June of this year, when my results showed high grade cell changes. At this point my consultant changed from the guy I have seen since 2010 and tbh, the woman I've been changed to is not making the process any easier for me. 

Since June, I was told on the first appointment that my options as they stood were hysterectomy, or to preserve fertility, trachelectomy. I'm 31, single with no kids - the jury was still out on whether or not I wanted them, so this seemed the best option. In the meantime I was sent for an MRI which came back clear. 

The following appointment, I was all but convinced by the new consultant, that a mistake had been made... that it was likely they had taken cells from higher up due to the limited cervix left, and that this can happen occasionally, causing it to throw up a high grade result. A second smear test was taken to confirm this. 

Last week the consultant called me to tell me that the second test had shown high grade again, and as such they weren't wrong at all on the first occasion. She also said their recommendation is a hysterectomy, as the MRI has shown there isn't enough cervix left to carry out the trachelectomy, and that they are worried they are missing something higher up. Following this, she has now gone off for a week, and hasn't yet scheduled a further appointment for me... so once again, I am just left hanging. 

I called today to find out if an appointment has been made, and got all but useless responses. I'm pretty frustrated all round here. I don't know whether I'm coming or going, whether anyone has a definitive answer to what is next, and I have lost all confidence in this new consultant before anything has even progressed. 

Has anyone else had any issues with consultants? How easy would it be to change? I feel I should have absolute faith in the decisions being made for me and right now I really don't. I'm daunted and overwhelmed, I can't process what I'm being told anyway. I have all of these questions building up now, re: freezing eggs, the procedure, the recovery, what it means for me going forward... and feel that I'm just not all that important to get the answers, when an appointment hasn't even been made for me yet. 

I did warn that it would be a little bit of a rant (looks like I wasn't wrong), but just wondering if anyone has any advice... on any of it? Any words of wisdom are appreciated. 

Sam xx 

Hi Sam

You are entitled to ask for a second opinion on the NHS. I don't know where you are based but I think you go via your consultant, say you want another opinion from a different hospital so you can be confident going forward. They should be happy to do this for you. I was 100% confident in my consultant and you should be too.

Regarding the appointment with your own consultant, jeep pushing for one.

Cara xxx

Hi Cara, 

Thanks for your reply. I am definitely going to ask for another opinion, I understand the premise of the MDT team but I just am not confident in her delivery of information, so I don't know how I can get on board without being if that makes sense. Actually so much so, that I messaged my previous consultant on LinkedIn today, to ask if he could recommend anyone else in my area. 

It's just such a big deal, that I'd rather be totally comfortable with it. 

Sam xx


Sorry to hear about your consultant being less than helpful when communicating with you or not may be the case. Did you get a 2nd opinion? x


Thanks for asking. Yeah u got a second opinion from a new consultant and had the results of the MDT team explained. Seems like despite her lack of communication etc it was infact the correct diagnosis. 

Im now 7wks into my wait for the hysterectomy and tbh driving myself crazy. The waiting is torture.