Anyone with fibroid experience….

[njshep]

Hello-
I am 51 and have had issues with severely heavy bleeding for the past 2 years. I have been anemic as a result (ferritin level of 4). In February I had a hysterscopic uterine ablation and a myomectomy (fibroid removal) in order to get the bleeding under control. All biopsies came back clear.
My first 4 cycles were significantly lighter which was an incredible relief. At the follow up I told my surgeon that bleeding had been reduced by 80% to which he mentioned I should probably see improvements beyond that over the next few months.
Unfortunately, my last three cycles seem to be increasing with bouts of flooding and larger clots again. Certainly not as bad as before but certainly not where I hoped to be.
I followed up with the surgeon and he will investigate but he did mention that the fibroid wasn’t entirely removed and that it could be the base of it still causing problems.
Has anyone else had a fibroid removal that required a second surgery?

I did. I had a myomectomy when I was 32, had a baby at 41 and then had a hysterectomy at 51. It was the only way for my fibroids to stop growing. They had gotten increasingly bothersome in my late 40s. Some women are reluctant to have a hysterectomy but it worked out great for me. No more pain, no more
periods and I could sleep through the night without needing to pee.

thabk you for the reply.
Did your myomectomy work?

I had a myomectomy in 2012 which removed 2kg of fibroids, and a keyhole ablation in 2014 which removed another smaller one, but they eventually grew back, putting pressure on my bladder, so I was re-referred in 2019. I didn't want a hysterectomy so had a Uterine Arterial Embolisation to cut off the blood supply to the biggest ones; the CT scan to check how well it had worked was cancelled because of lockdown, but to be honest, I suspect they're as big as ever.

Other than a bit of a lump, I don't really have any symptoms - no flooding, no pain, no bladder pressure - so I'm just sitting it out. They shrink during menopause when the oestrogen supply dwindles but I'm now on HRT at 49, so I don't know when that'll be. I'm slightly wary of a hysterectomy as I suspect there's a fair bit of adhesion in there, and I don't want to cause another set of issues.

Can I ask, how long did it take for the fibroids to grow after the myomectomy?

I'm not completely sure, to be honest - four or five years? I think if you're predisposed to fibroids, and the conditions don't change, unfortunately then new ones can form*, until menopause cuts off the oestrogen supply.

• I am not a doctor!

My fibroid removal took 3 surgeries. The first 2 were hysteroscopic. The 3rd was abdominal.

@njshep By the time I got pregnant 9 years after the myomectomy, the fibroids were back and stimulated by pregnancy hormones. I had a planned c-section because of the prior surgery at 37w3days. But I was measuring 44 weeks because there was a huge fibroid. I muddled along for 10 more years, but had so much discomfort and bleeding until the hysterectomy.

was the three surgeries all for one fibroid?

The first surgery when I was 32 was for two--one was the size of a small orange and one the size of a walnut. But the bleeding was dramatic. Then I had a baby, then the hysterectomy. The main fibroid then was the size of a large grapefruit. I could see it though my belly. Is there a reason you don't want to have a hysterectomy? I resisted, but I was exactly your age when I finally did it and I was sorry that I waited so long. I feel so much healthier.

I actually have no issues with getting one if it is presented as an option. I’m sick of it all!

I had four surgeries - only the last surgeon managed to get the troublesome fibroid out. It was small but was the one causing the issues. The other surgeons couldn't manage it. All down privately. 7 years later I'm having the same surgery.

After having an separate issue, I was told I’d be back in 6 months for a hysterectomy. 3 months later I had a second opinion and had a hysterectomy 4 weeks later.
You are either in or entering the menopause, so bar the surgery and a few weeks discomfort you’ll be in a better place.
My sister is older than me and still flooding at 54

I should add it was because of fibroids