Fibroid- When is bleeding just too much???

[njshep]

At what point is heavy bleeding too much?

I have a 4cm submucosal fibroid. I had surgery last year to remove it plus an ablation. The surgery was a failure bc the fibroid couldn’t not be fully taken out due to where it is located. They got about half of it at the time. Thing improved temporarily but have slowly gotten worse over 18 months.
I am having periods every 24 days and periods last up to 10 days. Most days are heavy going through a super plus and pad within a hour or so. The clots are massive. I’m going through boxes of protection at at time. It slows down then starts back with avengance and I’m sidelined from many things bc it’s all so unpredictable. Today after 5 days so far of pretty horrific bleeding I feel horrible- weak and woozy and tired.
my ferritin had just risen from 6to 17 and I feel like this latest episode just made it tank again.
I’ve tried tranaxemic acid but it just compounds the size of the clots.
My surgeon just checks is in with me every three months to see what we will do next feel like he is pushing off an actual next step everytime in hopes I’ll hit menopause soon (I’m 52) as it is expected the fibroid will shrink.
I don’t think he fully understands the extent of the blood loss….is there a point at which this becomes actually serious???

Wiw, my bleeding was nowhere near that bad and I was recommended(and had) a hysterectomy.

You need to be pushing for further action, that's no way to be living. 💐

Very sorry you’re going through this.

You must surely be affected by anaemia? I know someone similarly afflicted who woke up one morning (after a couple of years of medical inaction) so weak she couldn’t actually move her limbs. GP did a blood test, turned pale (the doctor, not the patient) and called an ambulance. Diagnosed with anaemia so bad consultants were wandering into the ward to gaze at the woman who was inexplicably still alive. She had a blood transfusion that night - but it took another couple of years until she finally had fibroid embolisation - which worked. A good four years lost …

Honestly I’d press for more and better action.

You poor thing- I also think you should push for a hysterectomy- you can't carry on like this. Please take someone assertive with you to see the consultant and to help you to advocate for yourself.

The person I mentioned spoke with her GP and was recommended and referred to a consultant for embolisation. She went home expectant. Waited. When she’d heard nothing after 18 months (and this was when we had a proper NHS) she enquired of the GP - only to be told that the sole consultant qualified to progress the treatment had left the locality. No one had bothered to tell her. Which meant nearly another year of waiting …

The way women are dismissed and ignored as patients is actually unbelievable.

I can relate to this. I had bleeding the exact same. My cycle was 32 days with 7-10 days of heavy bleeding. Super plus tampons and night time pad would be changed every hour, mine was caused by endometriosis, had the surgery and then mirena coil which had definitely helped.
I don't know if you're able to get the mirena with fibroids. But it could be worth looking into it. Get yourself some iron tablets from the GP, I've had to take these daily for many years just to maintain the bare minimum iron level. It was hellish. I hope you get some relief soon.
Interesting all the posters offered hysterectomy's, this has never been an option for me. Although I'm in my early 30s so maybe that's why. I would certainly enquire about that also.

I don't have a fibroid but have suffered heavy periods, flooding and clots and my GP suggested trying the mini pill as I didn't want coil. Its worked for me and stopped my periods
Appreciate it does not work for everyone or may not be suitable

I had fibroids. Couple of big 7cm ones but it was a 1cm bastard that caused the issues. I had it removed like you but it just spawned. I finally had enough and had a hysterectomy last year. Prior to that I had been through all lines of defense including the monthly injections, ablation etc so my consultant suggested the hysterectomy. I'm 45 so done with babies etc and for me it was a no-brainer.
I can't articulate well enough the difference it's made to my life. My life is no longer ruled by san pro, flooding and pain. It was totally worth the very short term pain after the op. As a bonus, in the 6 months since then, my hairdresser noticed that my hair had started growing again. I think with the blood loss before I was just existing, not thriving.
Best wishes, hope you get resolution soon the bleeding and pain were awful. When it first started I remember being in a restaurant and felt a gush. Somehow a palm sized clot was making an escape. I got to the toilet leaving only a little trail of blood that the staff kindly and discreetly wiped up, it's mortifying.

Thank you son incredibly much for sharing all of your stories. I have decided that 5 years of this is just too much and am going to push for a hysterectomy. I only have 2 weeks of every month that are normal. I’m sick of being tired, weak and dizzy. It’s been absolute insanity….

Good for you, it sounds awful.