Very fast growing fibroid - frightened

[Ridingladybugs]

Hi everyone

Just posting as have health anxiety and am feeling very scared atm. I had a fibroid discovered last year, and an MRI taken ( as I’m lucky enough to go private). It all looked fine and no treatment decided.

Since then I have had increased heavy bleeding and ended up in hospital. Fibroid has grown significantly.

I’m 45 so consultant said he’s not worried as thinks likely it’s perimenopause with high eostrogrn. I could see he was thrown by it. He did say if I was post menopause he would be concerned. I’m waiting on a further MRI report atm.

I have health anxiety though and I am completely panicking . I made the mistake of googling and can see that uterine sarcomas have a very very poor prognosis ( and mine would have been growing for at least a year). I’m a single parent.

I really need to somehow get a grip whilst I wait for the MRI report ( and am also going to have a blood test). I can feel my heart racing and want to cry when I think of my kids

Yes I’m definitely having a hysterectomy whatever now. The only question is whether I need a specialist oncology surgeon if cancer is suspected ( my hunch is the MDT will say this because you can’t really tell without a biopsy anyway).

Hi OP, it interesting that your fibroid is considered fast growing. Mine is bigger and has grown faster (sorry, I know it's not a competition 😀) and I'm just on the loooong waiting list for a hysterectomy. I wonder if different trusts have different protocols or maybe mine is just rubbish!

Try to put it to the back of your mind. It's horrible that something is growing where it shouldn't but it is liveable with.

Oh that is a bit strange @Paq. Perhaps it’s the percentage growth ( so I guess mine has almost doubled in going from 5.5 to 9.5 in a year)? Or maybe they do have different protocols which would be a bit odd!

My consultant definitely spoke as if it was some sort of protocol triggered purely by growth ( as both MRIs have had no suspicions noted).

Obviously I don’t want anyone to have a fibroid but your post has made me feel a bit better! I hope that’s ok!

Mine's gone from 4cm to 12cm in 2.5 years <proud> and I think most of that has been in the last year. I have to fight for any attention from my gynae consultant. Have been waiting for over 32 weeks since referral for a hysterectomy with an expectation it will be a year or more before I'm seen. I hope you get better treatment!

I hope you get seen soon @Paq

Arrghh. My images couldn’t be looked at today at MDT due to a ‘technical failure’. So now I’ve no idea when they will be looked at and I will hear 😢

Hello - I thought I’d update incase anyone is in a similar position and finds this thread.

The MDT concluded that their view is that it is just a fibroid, growing quickly due to perimenopause.

I spoke to my consultant and now have the option of either myectomy or hysterectomy. Consultant is leaving towards mysectomy as it’s just a single fibroid . If anyone has any views gratefully received ( have to say I kind of would just like someone to tell me what to do! I’m not great at making medical decisions!)

Hi OP, good news on the result, I hope it puts your mind at rest.

I was adamant I wanted a hysterectomy but I have horrendous periods and I couldn't face any future recurrence. It is a big op though and not to be taken lightly.

Hopefully someone else will come on here having had treatment and tell you what it's like on the other side.

That's fantastic news. Delighted to hear that.

Thanks both.

Paq - yes this is what is making me umm and ahh. I’m 45 so potentially a lot of periods to go - I may however get one ovary removed ( as it has the start of a fibroma on it) which would hasten menopause. The consultant seems quite confident my periods should settle once the fibroid has gone

Honestly, go for the hysterectomy. My life began again afterwards. It takes a month to be fully operational I think , but I was literally back in the saddle ( have a horse and love cycling) within two months. I just wish Inhadn’t wasted time thinking the menopause would deal with it naturally as I had two terrible years.

I'm 3 weeks post hysterectomy and feel fantastic. Fibroids grow back if you just have them removed. Try and preserve your ovaries so no early menopause.

I would need a full abdominal hysterectomy is the only thing - and am a single parent with two primary DC and no- one I could get to help.

It is a tricky decision!

What age are your dc? Could you get someone to help your do school runs/ shopping for the first two weeks? Get the freezer stocked.. I was surprised how much my dc could help me but they were 8 and 10 not tinies.

7 and 10 but the eldest has SEN to complicate things.

it’s tricky as I don’t live on the school run route annoyingly and my close friends tend to be the mums of other DC with SEN, so less flexibility.

Could you buy in some help for a few weeks?

Yes I think I’d have to try.

if I’m totally honest it’s being on my own the week after at night that I’m a bit worried about.

i think even with a myomectomy I will probably need some help the first week

Really good news re your results!

You need to make your own decision but I don't regret my hysterectomy for a minute.
Unbelievably wonderful to be free from living your life around bleeding and feeling awful and scared from it.
I went on holiday this year for the first time without worrying and didn't sleep on plastic bags in an effort to not flood the bed, amazing!

Have you pressed your consultant at all about laparoscopic? I ask as before you mentioned our fibroids were same size and same position and I was just able to have laparoscopic.

I was walking my kids to school 6 days after surgery and although tired I was surprised that recovery was not too bad, especially after everything I had read.

Thanks!

Yes have asked two consultants - both say size and location plus previous c section scars means they don’t want to laparoscopic unfortunately.

I won’t be totally relaxed until it’s been biopsied after all this is don’t think but do feel a lot better about things!

Mine was full abdominal but cut vertically which has REALLY sped up my healing, at the 2 week mark I kept forgetting I'd had it done. Mine was really high up (it came to under my boobs!) so they had to.
But I had my ex doing school runs etc. You definitely need help unless you keep them off.

i just wanted to update this incase anyone is googling a fast growing fibroid and finds it.

I had an open myomectomy the other week and all my biopsies came back clear. So it was just a fast growing fibroid.

Thanks again to everyone who was kind enough to post reassurance when I was going a bit loopy with anxiety - it really did help.

Great news OP.

I had my Decapeptyl injection today, ahead of my hysterectomy scheduled for March 2023. Just waiting for the side effects to kick in in the next week or two.

Is that similar to Zoladex ( hormone blocker)?

You might be lucky - I got some initial anxiety but then hardly any side effects, just a couple of night sweats. I actually feel way better on it than off!