Fibroids

[Rachel12]

Hi everyone, hope everyone is doing ok.
I’m 43 and was diagnosed with a fibroid 3.5 years ago due to heavy bleeding. I then had a more a coil in. March 2020 I had a bleed so had a scan and the fibroid had grown and they said I could have a hysterectomy but as I had no other symptoms of the fibroid and they said the hysterectomy would give me more problems I decided against it and forgot about the fibroid. Since March this year my anxiety has been awful and i started prodding my tummy, anyway this freaked me out and I ended up at the GP who sent for a scan to reassure me that it was just my fibroid. In the next 6 weeks my anxiety got worse and I had a private scan that confirmed the fibroid was still there and that was what I was feeling which again freaked me out, I had the nhs scan in June and again this confirmed it was my fibroid, the sonographer was amazing with me after I had a meltdown over it, he showed me exactly where the penduculated fibroid was where it joined my uterus etc and talked me through it all and I relaxed a little. I then asked my gap to refer me to gynae as I want a hysterectomy which she did.
I saw my consultant 3.5 weeks ago who has said she can feel a large fibroid, agreed to hysterectomy and started me on GNRH therapy to shrink the fibroid and told me she would send me for an MRI to see where it’s sitting in my pelvis. I had my scan this week 3.5 week after seeing her and I’ve just gone into meltdown again, I couldn’t sign the form at mri as I was shaking that much. I feel it’s more than a fibroid and thinking endometrial or ovarian cancer.
Surely my consultant wouldn’t start me on fibroid treatment if she didn’t think it was a fibroid? Surely I would’ve had the scan quicker than 3.5 weeks if she thought it was something else
I’m a mess and don’t know what to do

[Heather1234]

Hi everyone, hope everyone is doing ok.
I’m 43 and was diagnosed with a fibroid 3.5 years ago due to heavy bleeding. I then had a more a coil in. March 2020 I had a bleed so had a scan and the fibroid had grown and they said I could have a hysterectomy but as I had no other symptoms of the fibroid and they said the hysterectomy would give me more problems I decided against it and forgot about the fibroid. Since March this year my anxiety has been awful and i started prodding my tummy, anyway this freaked me out and I ended up at the GP who sent for a scan to reassure me that it was just my fibroid. In the next 6 weeks my anxiety got worse and I had a private scan that confirmed the fibroid was still there and that was what I was feeling which again freaked me out, I had the nhs scan in June and again this confirmed it was my fibroid, the sonographer was amazing with me after I had a meltdown over it, he showed me exactly where the penduculated fibroid was where it joined my uterus etc and talked me through it all and I relaxed a little. I then asked my gap to refer me to gynae as I want a hysterectomy which she did.
I saw my consultant 3.5 weeks ago who has said she can feel a large fibroid, agreed to hysterectomy and started me on GNRH therapy to shrink the fibroid and told me she would send me for an MRI to see where it’s sitting in my pelvis. I had my scan this week 3.5 week after seeing her and I’ve just gone into meltdown again, I couldn’t sign the form at mri as I was shaking that much. I feel it’s more than a fibroid and thinking endometrial or ovarian cancer.
Surely my consultant wouldn’t start me on fibroid treatment if she didn’t think it was a fibroid? Surely I would’ve had the scan quicker than 3.5 weeks if she thought it was something else
I’m a mess and don’t know what to do

I would agree that they would not be treating you for the fibroid if they were not sure about it. Plus it sounds like you've had a few scans that have confirmed it as well?
Hope you feel better soon.

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[Rachel12]

So I’ve had the results of mri back and it states large fibroid approx 20cm, ovaries, tubes, Bowles, bladder kidneys etc all good, fibroid pushing on ureter though, fibroid free in abdomen and not attached to anything else.
They have said I need to go to a larger hospital for hysterectomy due to its size, this has sent me into meltdown and then I googled the consultant who I will be under and he is a gynaecologist plus a gynaecologist oncologist which has made me hysterical. I spoke to my original consultant and gynae nurses and they have told me it says large fibroid on the paperwork but they are concerned due to its size and it has grown in 18 months, they said they can’t 100% reassure me it’s just a fibroid till it’s taken out even though they think it is they have said the word concerned.
I spoke to my gp who said in previous scans the last in June it said it was a fibroid and there is no evidence it’s cancer all my bloods etc are normal. I know this is cancer and that’s it I’m spiralling and don’t know what to do

[BlueIris]

Hi Rachel,

No personal experience here, but a colleague of mine had similar to you - a large fibroid that was dealt with by a gynaecological oncologist. All it meant was that it was a really large fibroid that was pushing on her ureter, no malignancy.

It was 100% benign.

[nomorepanic]

cancer is never cancer until they say it is so please try not to think the worst and trust they will get it sorted for you.

[ErinKC]

I'm sorry I'm just seeing this. I feel like I'm the resident fibroids lady here. I had a hysterectomy in February for multiple, giant fibroids that grew very fast (like quadrupled in size in 2 years). My uterus was 1833 grams, while a normal one is about 60 grams. They always have to say that there's a small chance it's cancer, but I did A LOT of research and found that the most recent studies show that the rate of growth has no association with whether or not a presumed fibroid is cancer. Plus, leiomyosarcoma (the cancer it would be) is EXTRAORDINARILY rare (less than 1 percent of uterine masses). My gyn told me that in 30 years she's only ever seen one case of it. Meanwhile, fibroids are incredible common - some studies show that upwards of 70% of women will develop fibroids during their reproductive years. Plus, rapid growth in the pre-menopause stage is also common due to hormonal fluctuation. I had no growth for a decade and then massively rapid growth that shocked my doctor between 36-38. Everything was removed and all was benign!

Also - another reason for sending you to an oncologist is their expertise. My gyn recommended I see a gynecologic oncologist because they are trained to handle all the surrounding areas more than a regular gyn surgeon. This is useful when you have a large fibroid that touches other areas - like your ureter. Rather than needing to consult with other surgeons they are able to navigate around all those things to remove the fibroid.