Hi all, I’m 46 and next Monday will be having a full hysterectomy and ovaries removal via open surgery. I was diagnosed with endometriosis 5 years ago and during the diagnosis they spotted a fibroid on my ultrasound which was 2cm, nothing unusual. A mirena coil was implanted to control the bleeding (it pretty much stopped it) and pain from the endo which seemed to work. Fast forward to this year and my coil was due to be replaced. I called my GP who started asking about symptoms, the pain was back, it had been for about a year but due to Covid I’d been putting off getting the coil replaced, and i was bleeding again, although still only lightly. Rather than just replacing the coil she sent me for a range of tests. All the bloods came back fine but the ultrasound showed that the fibroid had grown from 2cm to 8cm in 5 years, which is apparently fast growing. Emergency referral to Gynocology at St Mary’s. The consultant initially said, its just a fibroid but we’ll send you for a MRI to confirm but if its just a fibroid just get your coil replaced and it’ll be fine, no further treatment needed - happy days! The week after I had the MRI, and then got a call from the consultant who then said she was concerned that the scan showed a ‘malignant transformation’ and she now wanted to do a full hysterectomy - bit of a turn around!! She recommended i had the ovaries removed too to reduce any future risk of ovarian cancer, and given my age as I’m not far off natural menopause I thought if they’re going in anyway, might as well get it over and done with!
Thing is, I could be going through all this for nothing if it is just a fibroid. Consultant has said its a low chance it’ll be malignant (1 in 400 I think) but they won’t try a biopsy first as they might not get the right bit, so its a bit of a waiting game. I suppose either way the fibroid needs to come out if its growing that fast, but every time I hear oncology when i call the hospital, its a bit scary as I’m pretty much banking on it being ‘just a fibroid’. Just wondering if anyone has been through anything similar and has any words of advice?
Hi and welcome to our little corner of the Online Community. Here you'll find a lovely group of supportive ladies who have all been exactly where you are now. A possibility of cancer diagnosis brings all sorts of stress and fears and if anyone can hold your hand and reassure you we will. We're all at the start, in the middle or the end of what can only be described as a roller-coaster ride. The ride no-one wants to get on.
I get where you're coming from - is this all being done for nothing? After my experience, I'd rather err on the side of caution. I had no clue I had an alien (and an aggressive one at that) growing inside me.
It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.
Monday will be over before you know it so if you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.
It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer I found it invaluable in my journey.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00 8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .
There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
Sending you welcoming hugs, B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi Deborino, Yes it feels very unreal. I am otherwise fit and healthy and the pain I feel is nothing that I haven’t had for the last few years so it feels very strange to be going in for major surgery when I feel well. But, they don't know if it is just a fibroid or if it has transformed and is malignant, but they are clearly concerned and it has quadrupled in size in the last 4 years, so I need to follow the medical advice and get it out. Yes, I am Manchester based, currently sat in the admissions room at St Marys as the op is today. Finger crossed 
