Can't decide on a hysterectomy

Hi all,

Looking for some advice (and also somewhere to vent some frustration).

I had two LLETZ (October 16 and Jan 17) after an abnormal smear in August. The results were CIN1+CIN2+CIN3+CGIN. The last LLETZ resulted in no clear margins.

Here’s the killer bit: I was in an IVF appointment when the IVF consultant said that it we were good to go in four months as long as I got the all clear from the colposcopy people and that there was a note there to go and see the consultant. I hadn’t received the letter yet. The next day, I phoned the colposcopy unit and asked them to tell me what was going on before I met the consultant. I was advised that I should have a hysterectomy. Cue bottom falling out of world.

So I’m 37 with a couple of miscarriages behind me and no children. When I eventually saw the colposcopy consultant she advised a hysterectomy. My silence probably communicated what I thought about that. i was referred to someone else who laid out all of the options:

  1. Do nothing.
  2. Have a further LLETZ by general anaesthetic.
  3. Tracheletomy (not advisable as risk of miscarriage is too high).
  4. Hysterectomy (keeping ovaries).

I asked for an MR scan and so I am currently waiting on that before I make a decision (just to check that there is nothing obviously wrong elsewhere).

But the wait is killing me and I can’t get my head around the risk and all of the likelihoods and probabilities. In the back of my mind I’m thinking ‘Well, most of my cervix is gone now, and I’m old, clearly with bad eggs’ so am I being too vain in thinking that I might want to preserve my fertility? I know that no one can answer that question, but any advice/shared experiences would be most helpful!

Dear amc1979

i am the same age as you, and also had cgin with unclear margins with lletz treatments in July, January and last week. When I visited last week I was given three options: leave it, lletz again, hysterectomy. They did the lletz as he was looking at my cervix anyway, but if it's unclear margins this time or comes up again in 6 months I know it's the op they will push. 

I haven't had any children. I was adamant with my ex that I didn't want any, and then my current partner I swayed for the first time in my life. the honest truth is I still don't know if I want them, but given my age and these problems it really isn't looking likely. ive tried to talk to my other half but he doesn't seem to understand the urgency of the decision and that given my age etc you can't just leave these things to chance (especially when you are still on the pill). ive been very surprised at my reaction to all of it. I haven't cried or got upset About not having kids which is maybe my answer. 


Will they only give you the IVF treatment with the all clear? the doctor said one of the options was do nothing for just now, could you try a round of ivf and then decide after that? You aren't being vain at all, please don't feel that, you have clearly been working towards a family and then this has been thrown in your way. 

I'm sorry I dont have anything useful to say, please stay positive and keep gathering information just now to try and help your decision. 


Jackie. X 

Thanks for this. If helps to know that I'm not on my own. My husband is great but he's leaving the decision up to me - he said that he'd rather have me than a fictitious baby that may or may not come... will ask about the ivf. They just said that they need colposcopy to give assent. Presumably, I could say do nothing and hope for the best.....