Scan for fibroids - what further tests ?

[babyblackbird]

Have just got home from having a transvaginal ultrasound where fibroids were found. The person doing the scan ( would it be a doctor ?) told me almost straight away she could see quite a few fibroids and measured them. She checked both ovaries but made no comment on them. At the end of the exam she said she would send the report to my GP and that they may want to order more tests, possibly blood tests to “ get a full picture of what was going on”. I’m now kicking myself that I didn't ask her for a more detailed explanation and am obviously now spiralling and assuming the worst.

my symptoms were very heavy and prolonged periods - I’m 52 and put it down to perimenopause. Anyone have any experience of what further tests and what they will be checking for ?

I've had the same scan and have just had a follow up appointment with the GP. They found a polyp, a fibroid and a thickened womb lining so I'm getting a follow-up investigation and a biopsy. They didn't mention blood tests so I can't comment on that. If you do go on the same pathway as myself 90% of women are not found to have cancer which is reassuring. My symptom was a proper period after 4 years of not having one.
It's normal to worry, however you are in the system which is good. Make sure you are on it and make sure you see the GP when they get in touch, I had difficulty getting an appointment yesterday for the results and probably would have left it if I'd been working full-time still. I'm 51.

Thank you - I’ve calmed down a bit now and reading this is also very reassuring. I suspect ( hope)the sonographer was probably just speaking generally but when I’m anxious about something I will over analyse every word !

Completely normal to feel anxious, I have done quite a lot of naughty googling because obviously you don’t want to go down a rabbit hole, however it’s also good to be informed. Having looked further into our case it’s around a 7% rate of positivity for cancer, so necessary to make sure it’s pursued, however low chance of the big C.

So it would have been a radiographer doing the scan hence saying they will send the results and report to your doctor. You will probably be referred for a MRI scan and blood test. I had fibroids diagnosed by ultrasound then had an MRI scan. I also had a CA (cancer antigen) blood test before the ultrasound to rule out ovarian cancer, and when I had the ultrasound the radiographer confirmed that I had fibroids and not cancerous tumours.

The next step after a transvaginal scan for me is a hysteroscopy and a biopsy to see if the polyp, thickening and fibroid is cancerous, maybe it’s different for ovarian issues.

I had 3 TV ultrasounds over the course of a year to monitor mine as they grew and shrank in line with my cycle. I’ve been given mefanemic acid to manage symptoms but it doesn’t work for me and my symptoms are worse so I’ve now got to have more blood tests, another TV ultrasound and a speculum exam (lucky me!). My aim at this point is to get a referral for a subtotal hysterectomy so I can get my life back and not plan everything around being unable to leave the house for 2 days every cycle. I’m 41.

Thanks all for the replies . I need to just hold my horses and wait for the results. It was the comment about “other tests” that freaked me out as I wondered if she had seen something in addition to the fibroids. I’m glad I’ve finally seen someone about it- also relieved to have been referred as initially GP’s attitude was that heavy or lengthy periods weren’t by themselves a reason for referral and it was only when I said I had bleeding in between that she agreed to refer.

I also had a hysteroscopy and biopsy and some polyps removed following a fibroid diagnosis. Nothing that they tried to treat the heavy bleeding worked so ended up having the fibroids nuked but went private as the NHS waiting list was ridiculously long just for an initial consultation appointment.

@MiddleAgedDread Good to know re private - my husband gets insurance through his work, which I seem to be using more than him at the moment 🙄.

Irritatingly, I had finally stopped bleeding 3 days ago which I was super happy about as we go on holiday on Monday, and now the ultrasound and being prodded around in there seems to have started it again 😩😩😩 - gutted

@babyblackbird it was 6 months wait for annual gynae appointment before lockdown hit so I dread to think what the waiting lists are like now unless there’s been a miraculous catch up!

I had a massive fibroid (18*11cm) as well as a generous ovarian cyst (6cm). They did a C25 (?) test on me looking for ovarian cancer but it was negative. I think it’s standard practice with fibroids. I had a UFE to shrink the fibroids but it didn’t work and in the end I had a hysterectomy which I wish I’d just had done in the first place.

@MayaPinion God that sounds like quite a tortuous journey to feeling better.

did anyone have a feeling of pressure in the groin ? I don’t know if I’m now imagining it cos I’ve read up on it all and it’s definitely not there all the time but every so often particularly at night.

Yep so my initial symptoms were pressure and a dragging feeling in my pelvic area. I could also feel a hard lump which protruded when I was lying down. I also had incontinence problems. I have a 10cm fibroid and am having a hysterectomy on the 26th August in a private hospital as an NHS patient. My initial appointment with my GP was October last year, so 10 months from start to finish. I think it would be longer if I was having it at an NHS hospital. I'm in Essex.

@creamcheeseandlox Good luck with the op. I have to admit I’m quite taken aback at the fact that women are having to have hysterectomies because of fibroids - the NHS website makes it sound as though there are so many other possible treatments, that that is fairly rare.

I'm not in the UK and where I live they will not do fibroidectomy on women past 43 and also don't do ufe unless as a last resort, so my options are just monitoring, medication or a hysterectomy.

My gynaecologist said that as I am 43 and done having kids a hysterectomy is the best option as it's a large fibroid and is impacting my everyday life. A myomectomy would only really be done on women who want to preserve their womb and fertility as there is a chance of the fibroids growing back.

The reason I was given is that hysterectomies are relatively straight forward for the surgeons so unless the woman still plans to have children, it's easier/safer to do a hysterectomy.

In my case though, I think the hysterectomy would be much worse than just having fibroids that case my periods to be heavier than they were.

I had a huge fibroid 9cm (uterus size was 6 months pg). Pressure on bladder, struggled to pee, lump when lying down…I was given options of fibroid removal, hysterectomy or UFE. I opted for UFE and it was quite straightforward and non invasive with very quick recovery, fibroid shrunk and died over 3-4 months. I’d definitely recommend as first line of treatment over other invasive options (unless there are other issues).
the main risk with UFE is that of uterine failure where it suddenly ‘dies’ which might need hysterectomy. So it’s usually for women done having children who are ok with this risk.