Awful post op recovery UAE - when will it feel better?

[SpectacularSalt]

I had UAE five days ago to treat fibroids. I was expecting a couple of days pain and then to just be tired for a week or so.
I feel absolutely awful. I’m in constant pain and having to take lots of high strength pain killers to keep it in check. The worst thing is the nausea. It’s awful. Like morning sickness. Nothing tastes right, everything smells horrendous and I feel sick non stop. Even with anti sickness medication.
is this normal? How long do I have to suffer this for before I feel human again?

Thanks all. I’m going to call the gynae team tomorrow and see what they say because I don’t think this is a typical experience.

By way of update, the hospital team referred me back to my GP. All they can do is give me stronger painkillers. With nothing else on offer, that’s all I can do is take the pain meds and hope it all goes away eventually. I really don’t recall that there was an option of never ending pain and sickness being an outcome of the fibroid treatment spelled out on the hospital information sheet though.

That's awful! Did they even check for infection?

Is it improving even if slightly or is it the same? Do you have to get back to work?

Not really! I was back at the hospital three times this week. I finally saw the gynae team on Wednesday and they’ve put me on a different painkiller (the fourth type they’ve tried) and some antibiotics. I still feel like I’ve been run over by a bus though. I just can’t imagine ever being better at this stage. My sick leave from work has (thankfully) been extended. But at some point I’m going to have to slap a smile back on and go back into the real world. 😢

I have heard people say that it’s worse than a hysterectomy.. it’s basically blocking an artery so the pain is ischemic … due loss blood supply… exactly what happens to your hear with a heart attack.
you need to be sees asap to check it out .. ring 111 , go to ED. Sepsis is lower risk but not no risk and you have symptoms infection… go now!

Have you had an ultrasound to check if everything is ok in the uterus? Could it be your fibroid breaking down?

I've had a small fibroid degenerate spontaneously last year and I felt very very ill (much more than UAE) and like I'd been hit by a truck with stabbing pain in the uterus for several days. Took me weeks to feel ok.
It sounds to me as though your fibroid is breaking up really quickly - but I'm no doctor. A scan will help I think.

Yes I had an ultrasound scan on Wednesday by the gynaecologist. She was really lovely and kind to me. Basically the fibroids are starting to calcify from the inside which is what they want. I think the problem for me has been the high level of inflammation I’ve experienced in response to the procedure. This is where the antibiotics come in (I think)

Sounds like it's a bit of a rare reaction to the procedure but still within the realms of 'normal'. I'd just take it easy and keep off work for another week. Hope you feel better soon!

Hope you feel better soon OP, I had a similar reaction to a different procedure a few years ago (ablation), had my tubes clipped at the same time, expected to feel better within a few days but was unwell for 6 weeks, no one could really find the answer, I had several lots of antibiotics (just in case) and felt tired and sick for a long time. The procedure also didn’t work so it was a waste of time. The time it took for me to feel better I could have recovered from a hysterectomy……which I am now booked in for next week.

@Lovemusic82 oh god that sounds awful. I hope the hysterectomy goes well and your recovery is swifter. Good luck.
I have to say I’m fearing that I will end up having to have the same. I opted for the embolisation as I thought I would be back on my feet much quicker as well!

It’s frustrating isn’t it? I chose the smaller surgery in hope for an easy fix and fast recovery. I haven’t really been right since. I’m hoping hysterectomy will solve everything.

It’s annoying when you read about others having a fast (normal) recovery for a small surgery when you’re suffering.

Having had more minor surgeries for heavy periods, I had a hysterectomy 9 weeks ago now and I feel fantastic now.
had to have it as an open procedure due to fibroid size, kept my ovaries as I'm 36 and after the first two weeks of discomfort, my energy levels are back, I'm not anaemic and feeling amazing.
good luck for yours, hope it's a similar result for you x

Oh that’s amazing! I can only dream of that kind of result. Four weeks after surgery and I’m still wiped out. I sleep about 18 hours a day!

Thank you. Had my surgery 2 days ago and am home recovering. Feeling pretty good other than the obvious discomforts but I’m pleased it’s done and I no longer have to deal with the long heavy periods.

Just by way of update, I’m now 5 weeks post embolization and I’m still in pain and exhausted. I saw a gynaecologist again today and they chuckled and said ‘you didn’t believe us when we said you’d recover in two weeks, did you?’
Basically the recovery is months. Until every bit of the fibroid is dead. So I’m only in the foothills of getting back to full health. If I’d known this, I would have thought twice about having the procedure and I’m mad as hell that all the patient information they gave to me lied. My life is on hold for the foreseeable future, which is really really NOT where o thought things would end up.

Oh that's awful!! I'm so sorry that you're in this situation; I'd be contacting PALS and complaining about how you were misinformed, they've got you to consent to something without explaining it properly to you.

That’s quite shocking in fact

I tried to write a complaint letter last week but I can only concentrate for short periods of time, so I couldn’t get it in order. I might try again tomorrow. I feel totally misled.

@SpectacularSalt - that's unacceptable. If the medical team are trying to convince you that this is a normal 'recovery' post UAE, then they are absolutely kidding you.

My UAE was around the same time as you and my recovery has been textbook so far. It's 7 weeks now I am back to all my regular stuff bar exercise which seems to exhaust me too much, But other than that I've had a return to normalcy at 2 weeks post embolisation. And that's what 'normal' is.

If you have the money can you see a consultant privately who can determine what's gone wrong and how to make you better?

@SpectacularSalt - how are you doing now? Hope you are better?

Thanks for checking in. I’m better in the sense that I don’t have pain between my periods but when I do have periods they are killers. Which wasn’t the case pre embolization. So that’s an Added bonus, eh? I was sent for a MRI to check progress. Sadly the fibroids haven’t shrunk at all so I’m still bloated, knackered and look pregnant. My stomach is all squashed too so I can only eat small meals. I have until August for things to improve and then the consultant has said I will probably need to consider a hysterectomy.

call the post op ward and ask to speak to the nurse in charge

That really sucks @therealcookiemonster , all of the pain and trauma and they haven’t shrunk!

Fingers crossed that they improve by August.

@Averagelife oh I’m so vexed about it. Especially knowing that if UAE hasn’t worked that I will have to go through the pain all over again with a hysterectomy. 😩