What detail did you get back from your MRI?

[Paq]

I had a pelvic MRI scan 6 weeks ago and the letter from the consultant just came through. After waiting so long (for the MRI as well as the results) it's a real let down. It's two sentences: "I am glad to inform you that the result of your recent MRI scan was very reassuring. It showed the same findings in the ultrasound scan you had last year as regards the fibroid, it hasn't changed in size and also there were no sinister features."

Should I expect a bit more information? For context:

• the ultrasound person said that they couldn't accurately scan my fibroid because it was too big, hence referral to MRI

• I'm 27 weeks into a wait for a hysterectomy because of this bloody fibroid, absolutely no news on when the op will be.

What information do you want exactly?

Type of fibroid, more accurate size, whether the fibroid is likely to be causing various symptoms or if they are caused by something else, implications for type of hysterectomy (especially if it's more or less likely to affect my ovaries).

It just felt like they glanced at the results and wrote the absolute bare minimum.

I had a hysterectomy for a large fibroid. I didn't have my ovaries removed, I think it's highly unlikely they will do so as AFAIK fibroids don't generally affect your ovaries, though they may remove the cervix)

If you're premenopausal they try to keep the ovaries as the oestrogen they produce help protect you against osteoporosis.

Yes, I want to keep my ovaries but it was mentioned as a possibility, which is why I wanted to know more about the fibroid.

The radiologist wouldn't go into that much detail in their report, they literally say what they see. They can't tell you if it is causing your symptoms, they can only report on the images.

The only way you would know the type of fibroid with accuracy is a biopsy, an MRI can give you an indication but it isn't definitive.

And even though it wasn't measured accurately on the ultrasound, the measurement on MRI can't be much different for them to not comment on it.

It sounds like they wanted to know if it had any sinister features, which would show on the MRI. And as it doesn't then they're not too worried.

Thanks @BlackandJello the MRI was definitely for size as it affects other aspects of treatment. The letter was from the gynae consultant not the radiologist.

I can't speak to my GP because I am under the care of the consultant, I can't speak to the consultant because they don't have any available appointments. I have constant abdominal pain and pain in my hip/groin joint but I don't know if it's related or not. I've had one conversation with a doctor in 11 months since my initial referral so I was hoping for a bit more insight from the MRI and follow up.

And by type of fibroid I meant - intramural, submucosal, subserosal etc. and if that affected the options for treatment.

Hey @Paq i get your frustration. The system is totally broken. I had something similar with a fibroid last year and I’m still on the waiting list to see a consultant because my 2cm fibroid is seen as routine not emergency. I also had pain and was worried- I ended up going to an osteopath who identified my hips were twisted and the psoas and ilia is muscles were overly tight, amount other things. I had six weeks of treatment and then a few follow ups and daily stretches and the pain is gone. I’ve managed the fibroid by identifying and addressing estrogen dominance which has improved symptoms. Good luck, the nhs is an absolute shit show at the moment

Ask for a copy of the MRI report? You can do a subject access request for that info, no appointment needed.

It's a shame there's no extra info if it's private. Will it be available for the nhs to see?

My nhs MRI was short but factual. About half a page but it detailed enough of the what, no investigations ever into the whys but that's OK for condition and age

Thanks @Weefreetiffany, that's the frustrating part. My fibroid was 2cm when first diagnosed in 2019 and I would have been a perfect candidate for less invasive treatment or keyhole surgery with shorter recovery times. Now I'm on an endless waiting list for major abdominal surgery.

If you can push for early treatment I would. I wish I knew then what I know now.

@BlackandJello yes, considering it but not sure if it will be too jargon-y for me to understand?

@Paq there shouldn't be too much jargon, nothing you couldn't Google anyway. Like a pp said, it will be short but factual.

It should at least tell you where and what (submucosal etc) and the size.

I have fibroids too, although diagnosed by ultrasound. I genuinely didn't think they did surgery for them although I suppose it depends on your symptoms.

I think they avoid surgery but I don't know why, except maybe cost and patriarchy. If you aren't planning on having any (more) children and, like me, your periods are debilitating, why not offer surgery? Women are just left to suffer and it's ridiculous.

Have you considered an embolisation? I had it a year ago and it's been great.

Way past that point, my fibroid is 10cm+ and I have more up and coming!

So in case anyone is interested, I did a subject access request and the automated response has said that there is a 100+ day turnaround time at the moment. FFS.

Can you not just speak to the consultants secretary and ask for a copy of the report? Or for it to be sent to your GP and then it should go on your electronic notes?

@hopeishere I tried that, they were adamant I needed to do an SAR 🤷🏻‍♀️