Uterus swelled up fast, from 14 weeks to 18 weeks' size, almost immediately after UFE
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Here’s a stumper: 48 hours after UFE, my uterus swelled up quickly and dramatically enough to irritate my bowel. It felt like I’d gone from looking almost four months pregnant to at least five. A CT scan one week after UFE showed that necrosis was underway for the two subserosal lunkers (each measuring over 10 cm. on the pre-UFE MRI) that featured most prominently on the scan, and the doctors who assessed it assured me that the inflammation would resolve itself.
That was 4.5 weeks ago - the UFE itself was 39 days ago - and while the swelling did go down some, it’s far from gone. This week, according to the gynecologist, my 14-week pre-UFE uterus is now 18 weeks in size. The radiologist hasn’t seen this reaction before and admits that he’s stumped.
Have any of you experienced long-lasting fibroid inflammation, post UFE? In searching online forums, I haven’t seen many references to it. The gynecologist says that if it gets worse between now (5.5 weeks post-UFE) and 6-7 weeks from now, some kind of surgery will be in order. However, if the uterus has neither grown nor shrunk, watching and waiting will be fine.
More background on me, in case it’s useful:
Age: 51. Previous surgeries: none. Pregnancies: none. Vaguely perimenopausal, but no evidence of menopause on the horizon yet. Numerous fibroids of various types, with at least 2-3 especially large ones. As the radiologist put it, my fibroid load is “large.” Like me, both my mother and her mother developed multiple, big fibroids in their late thirties. I’m short-waisted, so as the fibroids grew, a real estate crunch developed in my abdomen. No pain, just bulk symptoms, notably - and this was a first - breathing challenges at 9,500 feet / 2,700 meters elevation while alpine skiing during a warm powder day, four months before UFE. Hello, squeezed diaphragm.
For surgery, the catheter was inserted in my left wrist, via the radial artery. Post-UFE discharge lasted about 4.5 weeks as light spotting. First post-UFE period began 37 days after surgery - it’s ongoing and, so far, light.
Pre-UFE medication that might have played a role in the growth of the fibroids: oral micronized progesterone, 100 mg. per day. About twenty months before UFE, a naturopathic doctor (I’m in the U.S.) recommended progesterone to control the heavy, erratic menstrual bleeding I suffered from. We tried 25 mg./day, then 50 - and then, on my own, I tried 100mg/day and found, at last, some control over bleeding. Dropping the progesterone for just three weeks in December 2016 led to a nine-week bloodbath, so I had considerable incentive to keep taking it. Did I realize all that time that progesterone MIGHT contribute to the growth of fibroids? Nope. The three medical folks whose advice I sought - two naturopaths and one nurse practitioner - all tow the “it doesn’t promote fibroids” line. Only in the last six months did I get the opposite perspective from other professionals (two docs and another naturopath), who all agree that, potentially, progesterone might have accelerated my fibroids’ growth. (This information spurred me into trying UFE, to break a potentially vicious cycle.) I dropped the progesterone a day before UFE, perhaps adding even more hormone disruption to the mix, post-surgery.
Other post-UFE symptoms: pretty average (whatever “average” might be!) cramping for the 24 hours after surgery, which were spent in the hospital. Notable fatigue followed for the next five weeks, accompanied by headaches (or, early on, a low fever) every afternoon/evening. The rapid swelling of my uterus on Day 2 irritated my bowel, with the worst symptoms lasting from Day 4 through around Day 16 following UFE (though bloating and minor irritation lingered till five weeks after surgery). As of Day 39, this seems to be back to normal.
Thanks for the hive-mind wisdom!
0 likes, 4 replies
linda96127 MountainBee
Posted
As far as the swelling goes I have not read anyone else that has posted that. I will pray that the swelling goes down for you and that you will be more comfortable.
MountainBee linda96127
Posted
Hi, linda96127 -
It's no fun anticipating how you'll react to a pain forecast, is it? Do they plan to keep you in the hospital overnight after surgery? I was there overnight, and felt reassured knowing that their 'pain plan' wouldn't let me leave till I could manage oral pain meds on my own, at home.
I'm bad at that 1 to 10 rating system. I dunno, call it a 6? Probably only because I've lived a sheltered life - but add a few points for sheer duration and a fear of the unknown.
In my case, the ouch factor of initial post-procedure cramping was no picnic, but it stayed manageable. From the last half-hour of surgery till 22 hours later - all of it spent on pain meds, either IV or oral - I wasn't exactly comfortable, but things never became unbearable, and knowing that I could holler for help was, again, reassuring. Sleeping was a good pain escape, and that came easily, in short bits, during the afternoon following surgery; the sedative helped. Distractions like visitors helped, too, at least short-term. The point when I realized it didn't hurt anymore, around 9am the next day, was quite a treat.
Don't be surprised if there's a Part Deux, though. In my case, 48 hours after surgery, I woke up feeling like I'd done 2,000 situps. My abdomen was its own entity all of a sudden, an entity with a sort of very, very bad hangover. That's the only day I took 2 hydrocodone tablets at a time for a couple of doses. By the next day, the aching wasn't as bad, and other than some icky stuff involving bowel irritation, things improved daily from that point.
If you've got an advocate by your side in the hospital, you'll be in good shape. Otherwise, prepare to advocate for yourself - practice assertiveness, if you can! Just being brave and going through with it may feel good, on various levels, in spite of discomfort. Good luck!
linda96127 MountainBee
Posted
Thank you MountainBee. Yes I am staying in the hospital for one night. I told my husband not to bring my kids if I'm a lot in a lot of pain but it sounds like it might be a good distraction. Thank you for your response on the pain. I know everyone is different. I guess the fear of the unknown is what scares me. I've lived a sheltered life too and other than having children, haven't really experienced too much pain. My hope is that the procedure will let me reclaim my normal activities again and I won't "fear" my periods anymore. Thank you sooo much for talking to me.
Pearlstone linda96127
Posted
I had UFE done on 20th of July 2016. I was stressed about the pain but it was so well controlled by all the medication. I spent one night in hospital and just when I was about to leave pain got so bad I even threw up. But after resting I was able to leave the hospital walking on my own 2 legs. I got some great tips on this page about water bottle and milk of magnesia...
I was much better within 2 weeks, just fatigue was troubling me and still is. The size of my uterus is down by almost half and the pain is just a distant memory.
Good luck