NSFL: uterine artery embolization is horrible and disgusting PART II

16 04 2012

when last we saw our heroine (that’s me), she was smacked out in a hydromorphone haze, leaving her bed only to go to the bathroom (and frequently), get water or juice, or take more pills. i couldn’t walk my dog (trusty nurse zak to the rescue!), put on pants, or eat food of any kind.

at this point, the only major pain was in the gaps between pills if i overslept or forgot. i can’t tell you how many times during those first few days i couldn’t remember whether or not i actually took my pill or not. sort of like those groggy mornings where you can’t remember if you shampooed your hair or not. unfortunately, i would have to err on the side of not taking the pill at all- rather than take a double dose. poisoning myself is a slightly greater concern than too squeaky hair.

but then on tuesday, i sort of woke up. mostly lucid for the first time in days, my first thought was- WHAT THE FUCK IS WRONG WITH MY MOUTH?

again, if you’re about to bite into a big sandwich or you want to ask me out on a date- now is the time to debark the story.

now, imagine that you’ve been bedridden  for 4+ days doing nothing but sip juice and pop pills to stay alive. when you finally do wake up and realize that you haven’t brushed your teeth since friday (now tuesday), and that there are some sort of gummy particles falling off your tongue. a quick mirror check will reveal that your entire mouth is covered in crusty white blobs.

a panicked bout of vigorous teeth and tongue brushing would result in the following:

1. a sink full of blood.

2. a tongue mostly devoid of tastebuds.

a panicked call to my doctor yields another doctor’s appointment and a prescription for a vile tasting viscous yellow liquid that i’m supposed to “swish and swallow”, but that i immediately barf into the sink instead. i make the compromise of squirting it on my tongue in tiny microdoses, and hoping that some of it eventually makes its way into my throat. it seems to be working.

on a hilarious sidenote, i decide to walk to the cvs a few blocks away to pick up my prescription and to get some fresh air. at one point in my life, i distinctly remember swearing that i would never go out in public in my pajama pants. so to anyone who saw someone who looked like me, in a pair of blue and white striped sweatpants shuffling drunkenly down forest ave on wednesday afternoon- YOU SAW NOTHING. but seriously, for a brief moment in time, i was officially one of the creepy/crazy people at the pharmacy that you actively try to avoid.

but back to our story…

while i’m battling it out with my disgusting mouth infection, i notice something else strange. despite being able to finally down more than just juice (though not much more), and despite dutifully taking the “stool softeners” twice a day, i have not pooped for 5 days. i panic.

i also start having low grade fevers (100ish degrees) in the gaps between my pills. and then as soon as take the pills i am jetted into menopause worthy hot flashes/sweats. i panic some more.

when i call my doctor to follow up on these new and alarming symptoms, she promises that she will call my surgeon to check and make sure there is nothing to worry about. she never calls back.

the next day, i call. i think the pills make me extra crazy and frantic, because every time i try to talk to a medical professional who doesn’t give me a straight answer, i fall apart. i cried on the phone no fewer than 3 times in 2 days. i’m positive that the front desk lady at my doc’s office has written: EMOTIONALLY UNSTABLE somewhere on my chart. i should probably find a new doctor after this.

a direct email to the surgeon yielded a more satisfactory result. i guess “post embolization syndrome” is a thing where you get a fever while your fibroids are dying. because i had so many big ‘uns, i guess i get extra fever fun days. i am told not to worry about the pooping. it will “work itself out”. GROSS.

well, it’s been 10 days. and for the first time since the morning before my surgery, i actually feel like a normal person. i did dishes. i changed my sheets. i took my dog for a walk in the sunshine. i ate peanut butter cups for lunch.

now that my pain is under control and my tastebuds have started to grow back, i guess the biggest problem i will face for up to the next month is the intermittent exhaustion. i’ll feel totally normal for a while, and then i’ll have to go lie down for 2 hours. i’m scared to start work tomorrow. i’m scared to go to the grocery store. as much as i want to launch back into my old go-go lifestyle right now, i know i’m not quite cooked yet. one really good day is great, but it’s still only one day.

consider this the temporary end of my vile little fairy tale. i know it was probably awkward and embarrassing to read, but i wanted to make sure that anyone who goes through this surgery actually knows how it is. obviously, it is different for everyone, but my ridiculous account is at least better than: I almost knew immediately that the procedure had made a difference. It was night and day. (fuck you testimonial lady)

i have no idea if it worked. i lost 6 pounds, and my abdomen is still as hard and protruding and lopsided as ever. i definitely have to pee less- which is pretty weird, because i thought that was just something about me that was unchangeable. but it will take at least 2-6 months before i know if it worked at all. i’ll let you know.

but maybe for now, we could think about something else for a while.



22 responses

16 04 2012
Miss Catherine

Oh, lady. To say this was an ordeal is an understatement. Proud of you for getting out there in your pajama pants! There’s no shame in that. And if you ever want someone to take you to the grocery store, I’m in. Even if you wear the pajama pants again. xoxoxoxoxoxoxo!!!!

17 04 2012

I admit I am interested in your account because I’ve wondered if I should “do something” about this bag of rocks I feel like I’ve been carrying in my abdomen for the last 15 years. I’ve been in menopause for two years now, and that definitely helped the achyness, but I’m waiting for the fibroids to “shrink” as the doctors ( well, the Internet ) says they will.

19 04 2012

wow, so sorry to hear this was awful! Sounds like a nightmare, but am glad this is behind you. At least, most of it is behind you. right? All downhill from here? Geesh, I really hope so. You have surely earned some good karma now!

22 04 2012

thanks gerry! do you get karma for going through a lot of pain? i don’t think so, but maybe i should pretend 😀 i am finally puffing back up though, i give myself 80% normal for this week, and i’m hoping for 90% next. the big question is whether or not the surgery actually worked. i don’t want to wait 2-6 months!

21 04 2012

I have not laughed this hard since last Monday when I went through my own embolization. Everything you described i had (except the mouth thing). But i still cant poop… Almost two weeks later… 1 bowel movement only. Stomach cramps, back ache and yecky discharge also continues. So how are your bowels?

22 04 2012

i’m so glad that other embolizees are finding this! i don’t know anyone else that has had it done. i’m sorry to hear about your pooping problems! i couldn’t poop for 5 days, and then things evened out. although i had the opposite problem for a few days after i started trying to eat normal food. terrible things happened when i ate some soy chicken nuggets before going to a dance concert. TERRIBLE THINGS! i also got a totally sweet yeast infection. FML.

23 04 2012
Carmen Cormier

Thanks for your story…I go for mine on the 25th.

10 05 2012

well, how did it go?

22 08 2013
Julie PR

Thank you for sharing your experience. I have to admit, you really made me laugh and at the same time I felt so bad for you. I have a GIGANTIC 20 week uterus filled with large and small ‘roids. I am petrified of UFE, however this is the option the doc’s are giving me. Quite frankly, your experience is what my anxiety ridden mind envisioned and apparently I’m not off track. Glad you are feeling better and cross your fingers because next month it’s my turn to wear pajama pants to CVS, God willing!

25 08 2014
Show me the morphine

Hey there

I had UFE on Thursday (I’m in the UK) and came to your blog because I googled “Can’t poop after UFE”

I’m going through the exact same bullshit. Five days and I’ve not had a BM. I can’t get comfy in any position. I need severely strong pain meds (Tramadol, paracetamol and ibuprofen every four hours or I cry)

No one at the hospital is calling me back when I phone. I think the major reason for pain is the fact I haven’t pooped and the biggest fibroid dying like a bitch. I’m sending my husband to get a bucket of Milk of Magnesia right now because six senna tablets and my own weight in vitamin C has done nothing.

I’d also like to mention that your blog on this shitty procedure is the first real thing I’ve read about it. Everyone else is “Yeah, no pain, few cramps, was up painting the Sistine Chapel and looking after my 26 children six hours later”

I think they’re lying paid shills.

Thanks for listening and making me feel normal.

Love and other indoor sports.

25 08 2014

it’s the damn pain meds, they turn your bowels into cement! and then you’re so preoccupied with it that it becomes psychological too. although, when it finally does happen, it will be parade-worthy. if i could have gotten out of bed to do anything other than pee, i would have made a cake. just keep on with the fiber, and wean yourself off the pain meds as soon as you can (i know it’s tough!), and it WILL happen.

as a post script, even after all that crap (pun intended), my UAE didn’t work out. my big bad fibroids came back after 2 years, and i finally had to have an abdominal hysterectomy a few weeks ago. on the upside, MUCH less painful and i pooped the first day. hopefully, you’ll have better luck with your procedure than i did.

get lots of rest, read every trashy magazine you can, and know that normalcy is just around the corner. i’m here if you need me!



6 10 2015

Loved your account, thanks for the humor. I had my ufe one week ago and I certainly felt the bait and switch–those were not menstrual cramps as advertised, they were like labor pains for 4 days straight, worst pain ever. And I too looked like the disheveled crazy lady limping through the grocery store with unwashed, uncombed hair today…new insight into those folks, ay?

8 01 2016

Yes, Yes, Yes – thank you. Finally the truth!!!! I think if you have large fibroids or a lot of them – you have a longer recovery time and more difficulty. I had the procedure 12/21/2015 and was not recovering as quickly as the doctor said I should. It’s 1/8/2016 and I still have daily pain and have to take meds to get through the day. Again, these are not cramps, but real contractions and you don’t get the benefit of a baby.

8 01 2016
Allie Munier

I actually ended up having a hysterectomy last year because my fibroids became active again and stared to grow. The UAE was sooo much worse than the major surgery. I hope that it works better for you than it did for me, but you have all my sympathy and hope. You’ll be tired for a while, but the pain should go away soon. Take care!

8 02 2016

This account is right on target with what I’ve been going through. I’m on my 4th postop day, & this is the worst pain I’ve ever experienced. Nothing in the literature suggested that my recovery would be this torturous. I wish I had read this blog before going through with the procedure. I only found it after googling “UFE is horrible.” Pain medicine doesn’t work. The only thing that puts a dent in the pain is hydromorphone. I feel a little better today, but not great. Does this get better? I’m seeing from a lot of posts that it didn’t work.

9 02 2016
Allie Munier

UAE was the worst pain I’ve ever experienced, and I’ve had kidney stones! I was popping Dilauded like it was going out of style for a good 10 days. I’m really sorry to hear that you’re suffering. It never ceases to shock me how many people find my blog by Googling “UAE sucks.” It does! It’s painful and sucks out your life force for weeks after you’re technically “recovered.” It took me months to feel like I was functioning normally again. I know that’s not good news. I suppose that even worse news is that it didn’t work for me. I had a hysterectomy in August of 2014 because after about a year, my fibroids started to grow and bleed again. That said, I don’t regret trying, and I do think it works for some people (maybe with smaller fibroids?). UAE was my only chance to keep my uterus and perhaps have kids someday. At 34, I needed to try one last thing before giving that up completely. I hope you’re one of the lucky ones. You will feel better eventually, but for now, rest.

15 02 2016

I had it done a week ago and I’m going through the same thing. How long did it take to get the nasty taste out your mouth?

15 02 2016

I’m on day 7 and this has been the worst experience/pain in my life. How long did the bad taste in your mouth last?

16 02 2016
Allie Munier

Well, I actually got thrush from the antibiotics (a fantastic cherry on top), so it took me a bout of week and swishing with a lot of foul tasting medicine to get my mouth back to normal. I hope you aren’t suffering the same!

18 02 2016

Sunday I will be two months to the date from my procedure. My first three weeks after SUCKED. What made it suck even more was the battle I had to fight with the doc regarding how I was feeling – it was like they were tone deaf and did not believe I was still in severe pain. I am here to report it does get better! Now I still have days with pain, although not as severe and I continue to have the sloughing of the fibroids from time to time – which can be annoying. I had my first period and it was a significant change from the past – so that has gone a long way to lifting my spirits and opinion about this. Doctor wants me to schedule the follow-up MRI to see how everything is progressing – but I want to wait a little longer. BESIDES, it is not as if I am going through this again if the results are not favorable [but it appears they are going to be even if it takes a while]!!!! It’s good to have this avenue to vent, so if you need to, do so. I was searching for someone who was going through the same thing and all I could find was the “HAPPY” testimonials and this pissed me off because I knew there had to be some different stories because I was suffering. Good Luck!

25 06 2017
angela Esson

so glad I found this site I am six days post op and am on paracetamol and the string codeine ones if I really need the, which has been often, I have lived on breakfast cereal all week and water. The pain is horrendous and I feel spaced out from the tablet and very down, the flu like symptoms were the worst like proper flu when you are a child

3 07 2017
Allie Munier

I lived on juice boxes for days, and ended up getting thrush as a bonus. I also ended up having a hysterectomy eventually anyway. WAY EASIER! That said, I am in my 30s, and I wanted to do anything I could to try to save my uterus. I think I would have regretted not trying. I hope that the procedure turns out better for you than it did for me. You will start to feel like yourself again soon, and I’m glad this blog could help a little (at least to let you know that you are not alone)!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: