Im 44, have a fibroid, been there years causing heavy period and anaemia, but the periods were manageable just about. No other real negatives from it except the insane periods.
About a year ago, I just started bleeding and couldn't stop, fist sized clots every 15 minutes, and was severely anaemic. I ended up in the emergency room at 3am. They gave me meds to stop the bleeding, and then eventually, the coil to manage my periods moving forward.
Long story short, I opted to go onto the surgery list to remove my fibroid because I figured that was the better option. Its small, by comparison to some, about 7cm, and apparently theres only the one, with no evidence of any more growing. I figured surgery was best while it was small, as I didn't want it to keep growing to the point it was so big that I had no options left but hysterectomy. I have always been opposed to hysterectomy; I already have bad anxiety, depression, and back pain, three things I don't want made any worse.
My gyno was originally happy to just put me on the coil and let me coast along until menopause, and was surprised I wanted surgery, but he understood my reasons and I went onto the waiting list.
Im in the UK, NHS, so we're talking well over a year wait to get a surgery date.
This was about a year ago, and in that time, my periods have been managed fine with the coil. Not perfect, but not life threatening. The bleeding is under control at the moment.
Also, in that time, they discovered I have a bicornuate uterus, ie, heart shaped, to quite an extreme degree. My gyno said he rarely sees this.
My gyno is a very nice man, but he's made comments that make me think hes a lot more blasƩ about hysterectomy than I am, and it worries me.
He's said things like 'well, if it proves too difficult to remove, you can just have a hysterectomy' and similar remarks.
I've told him I absolutely do not want a hysterectomy, and while he accepts that, he doesn't seem to entirely validate my fears over that, and slightly downplayed the negatives of hysterectomy.
I am obliged to consent on the form that I accept hysterectomy in the event its needed to save my life during the op, but I feel once that box is ticked, its a green light for surgeons to just take everything out, especially in my case where things aren't standard down there, and the risk of complications is higher.
I just got a call today that my surgery date is coming up if I wish to take it, and Im totally lost on what to do. I've been waiting over a year. Im autistic, and extremely anxious at the best of times, but the fear that I'll go into surgery and wake up without my uterus, either because there was a legit issue with bleeding out, or because the surgeon just decided it was easier. I've heard too many horror stories.
Right now, Im managing. I have expelled/lost one coil so far (no idea how, never noticed it nor located it, even on xray) but had a new one put in a couple of months ago, and so far, all fine.
Im really lost on whether to just hope the coil works for me, and that it gets me through these last few years before menopause, when the fibroid will resolve anyway OR opt for the surgery and know the fibroid is definitely gone but.......risk hysterectomy.
Recent scans show my fibroid has shrunk a little recently.
But if I say no to this surgery, and my period issues come back in a month or two, or can't be managed by the coil in the long run (such as if I also expel this one!), Im then stuck having to wait another year for the opportunity for the operation.
Some people would say Im just being paranoid and chances are, I'll not end up having all my lady parts removed in a fibroid surgery; most don't. But I just don't trust medical people on this particular issue, not when they're seemingly so keen to just do hysterectomies on everyone, and not inform people of the side effects.
I guess Im looking for advice and whether my fears are founded, or my usual over-thinking and worrying. It seems to me that if I don't desperately *need* to be cut open, why would I? I feel like a part of me is considering taking the surgery purely because I don't want to miss the chance, and don't want to have to wait another year, rather than because its actually the right option at this point in time. If there were no waiting list issues, Im sure I'd cancel, if not postpone, because at current.......things are manageable.
But if I expel this coil too, and my options going forward are then less, surgery might be my only choice.
I know if I ask this in a general fibroid forum, i'll just get told hysterectomy isn't a big deal anyway, which I absolutely disagree with. Here, I know people understand my fears.
Sorry for the long post, but what would you do in my situation? Do you think my unease is founded, or am I just being an overthinker? Thanks.
