Post-UFE experience from a DrPatient

Posted , 15 users are following.

I'm writing this post to share my experience but also has a therapeutic measure as Im quite sure this whole fibroid thing is triggering my depression.

I am day 8 post-procedure and I can tell you I am in such discomfort, I'm actually taking diazepam I had left over in the house to help sleep.

I am 29yo who wants nothing more than to have kids and was diagnosed with 3 fibroids (2cm, 3cm 4cm) on incidental finding 3yrs ago. I tried Esmya which didnt shrink them but they seemed to stol growing for a while so I was pretty happy and went aboit my merry way. Now, I know the options available to me but as I was only 26 at the time, finishing med school and not ready to start a family so I didnt do anything else, as theyll only grow back anyway.

Fast forward to about 6-9months ago when the constipation and heavy bleeding could no longer be ignored. I had an MRI which showed they are now 10cm, 8cm, 7cm and I had a really abnormally shaped uterus where you cant even see the cavity. I was devastated as my symptoms didnt measure up. I had heavy periods that made me tired but they still only lasted 4 days and bloating. Anyway, I decided to have the UFE asap and will likely need an interval myomectomy.

First thing is..this is NOT a day case! I was admitted to the same hospital where I work which added a dollop of awkwardness to the entire thing but ppl were actually quite supportive. I had briefly seen UFE patients at work and regret.not being more supportive now.

I had premedication with Difene, antiemetics, paracetamol and also got a catheter (I'll never be able to look at that nurse the same!)

The procedure itself went well and I had control of PCA throughout, though I was sedated so dont really remember much.

Day1 - pretty woozy, needed assistance mobilizing and catheter needed to come out early as the fibroids swelled up immediately as part of the initial inflammation and pushed it out of my bladder. Stopped using Morphine PCA due to nausea and vomiting. Asked for Oxycontin

Day2 - Pretty good, no suprapubic pain, I actually wondered if the procedure worked.

Day3 - all hell breaks loose. Constipated +++ and I lose my apetite. So I took Senna, lactulose and drank some prune juice in hopes of keeping things flowing freely. BIG mistake! Due to all the uterine swelling, my rectum was just completely blocked. So I had all this watery stool stuck in my intestines pushing with nowhere to go. My abdomen was so distended. I thought I was going to die! A lovely nurse I work with stayed up all night with me trying different things. I was on all fours crying. After 2 enemas, I had some bowel motion and eventually fell asleep at 5am.

Day 4 - Constipated again but now ive pretty much stopped eating. Im also picking and choosing my painkillers as Im not sure whats actually helping. I really just hate swallowing meds in general. I have been on PR Difene since admission which is a great antiinflammatory for the first 5 days.

Day 5 - Post-embolisation syndrome has fully set in. Feeling unwell, feverish, nausea, fatigue ++, just feeling sore everywhere and im still constipated. Stopped all opiods and PR Difene.

Day 6 - Dishcharged as we've ruled out an acute bowel obstruction and I can basically take it from there. I think ppl were just kinda tired of trying to manage this condition they dont know much about.

I've been home for 3-4 days and not feeling that much better. I can barely go up and down the stairs without getting tired. I eat 1 meal a day and its barely anything.

The abdominal cramps are still present and occassionally get so bad I feel a burning sensation in my uterus and abdomen. I wake up at night from the in my intestines mainly. My bowels finally opened but each one is preceded by excrutiating intestinal spasms.

I was discharged on paracetamol, keral, buscopan, acupan and cyclizine. I have now stopped taking everything regularly and only as I need. I really feel like the meds make me feel worse.

The bottom line is...youre not well at all! You need a minimum of 2 weeks off and id say up to 4 weeks depending on your job. Also, dont let anyone make you feel like you should be recovered by a certain time because they cant see a huge surgical scar. Youre having a systemic (all over) inflammatory response to necrotic tissue in your body that you have to carry around with you!!

Despite knowing all the medical details, I didnt expect to feel as bad as I do. And spent half of yesterday in tears as I dont feel much better than the day I was discharged.

So hope this helps certainly helpsu me to put it out there!

0 likes, 17 replies

17 Replies

  • Posted

    Thank you for sharing your experience. It's odd that so far I've only read difficulties with ufe

    Do you think if you had elected to do a myectomy it would have been easier?

    • Posted

      Vera, usually only people who've had difficulty with a procedure are posting online. The rest are happily living their lives. smile. Don't take an internet sample as being the majority. It's not. smile

      Check YouTube for lots of success stories with ufe. Also the yahoo embo group is great.

  • Posted

    It sounds like you are in the smaller percentage of women who need longer to recover. I will share my experience, which, according to my IR who is one of the top in the US and pioneered this procedure for fibroids 30 years ago, is more common. But there is a bell curve, and perhaps you are on the right side of it. Most women feel fine in a week but for some it takes two. The fatigue can last a month.

    I was given a list of meds to purchase and pick up at the pharmacy prior to my procedure. These included Colace, Milk of Magnesia, a prescription antacid, zofran, Advil, Tylenol, Naproxen, gas x, and opioid painkillers. I was given a long list on when and why to take them.

    During the procedure, I had epidural anesthesia for the first 12 hours. That covered the pain extremely well. I took no opioids whatsoever via iv or orally. Once released from hospital the day after my procedure, i was very comfortable alternating Advil and Tylenol and never took the opioid. I took my stool softeners and only needed the zofran once.

    It is VERY common for the pain to sneak up around day 3. This was my experience, but again was easily managed with one Naproxen and then I went back to the Advil and Tylenol the next day.

    The worst pain I experienced was the gas pain following the procedure. About a week later. But this was easily managed with gas x.

    My IR was very specific and said that I was to drink a glass of water for every hour of the day I was awake. This keeps the post embolization syndrome at bay and helps with bowels. Also, I was instructed to use a heating pad on my uterus DAILY for the first three months. This helps the body to break down the fibroid and aids in hyaline degeneration as well as relieving pain.

    Your experience, all things considered, certainly doesn't sound terrible. Much better than recovery from a hysterectomy or c-section. I'm glad it will help you to relate and be more sympathetic to patients, though. Honestly this week you should start to feel more yourself.

    I was driving two days later and back to my normal life by day 4-5. I had no restrictions other than no lifting with my left arm for two weeks as I had a transradial approach rather than through my groin. It was a faster easier recovery but is a fairly new approach for ufe.

    I hope you feel better soon. Get that heating pad going if you haven't already. smile

  • Posted

    Oh- I will add that at my 4 month MRI, my 12 cm fibroid was down to 7. I had my 6 month MRI recently but haven't got the results yet.

  • Posted

    I am fortunate as my UFE experience was not bad. I had my ufe in October 2016. I returned to work after 3-weeks. My pain started after day 3 but I started feeling better by the end of the 2nd week. I saw weight loss and no bloating immediately. I've had no subsequent pain and no period since.

    I had thoughts of regret while experiencing the pain but once I was out of pain and had no complications I was glad I went through the procedure because in my opinion, I micro invasive procedure is better than a surgical procedure and that's the route I will go every time if presented with a choice. My primary care physician is of the same opinion. I think UFE should be considered if a woman is a candidate. If it doesn't work then one can then look into the other surgical options available.

    I do hope you're feeling better and I pray you have a speedy recovery.

  • Posted

    Oh I would absolutely choose this over surgery anytime. Like I said Im under 30 and would like to have kids so will choose the mininally invasive option first.

    I am aware my situation is one of the 'rough' ones which is exactly why I wanted to share. Id read so many success stories like Beth0810 and initially only took a week off work. Completely silly in hindsight. I am not a big person and I have very large fibroids pretty much occupying my entire pelvis. So my body didnt react well at all.

    Vera 92363, I've been advised I'll likely need an interval myomectomy in a 6months to 1yr so this was done to reduce size.

    I do have heat packs! Those things are a life-saver!

    I am currently outside for the first time since procedure. Enjoying the sunshine in the park. So I'm optimistic! :-)

    • Posted

      Yay! Good to know.

      Continue with a heating pad daily for 3 months. It helps! smile

    • Posted

      I was admitted to hospital twice with sepsis post-ufe, and I've also had to have a dead fibroid removed by the gynae, so in my case recovery took approx. three months!

    • Posted

      Hey - how did you get end up getting on? I had a varicocele embolisation performed and have had symptoms for 7 months post. Im now looking at surgery to remove the coils they placed. Hope you're doing well.

  • Posted

    Thank you for your detailed, professional account.

    t is not easy for the body to get rid of necrotic tissues this large.

    Please be patient. You will feel better soon.

  • Posted

    Mine also presses on my bowels. I've done nothing medically yet.

    Did you look into MRgFUS ?

    I'm told I'm not a candidate for it.

    I would be concerned w that initial inflammation causing further bowel obstruction on me.

    Currently, I often have to press on perineum, so I can have bm.

    What remedy would I have if became bowel occlusion post UAE? Transvaginal myomectomy ? Abdominal myomectomy ?

    There is an embolization material that dissolves in days. Maybe this to minimize blood loss during trans vag myomectomy.

    What about Radiofrequency laparotomy invented by Dr. Lee?

  • Posted


    My apologies for your terrible experience. Here, I am thinking my experience was far worst than any woman before. My husband & I researched the UFE procedure here in Atlanta Georgia. Decided to go with a local physician here that advertised heavily to the African American community, let's call him Dr. "L".

    During the consultation with Dr. L a LOT was left out. Previously, I chose the myomectomy which worked wonders....I should have stuck with it.

    My UFE caused MAJOR issues:

    1). The pain was much more severe after the UFE, unlike the myomectomy.

    2). I too experience the dizziness, constipation, and to add sometimes delusional.

    3). My average weight was typically, 145 to 150.

    4). After the UFE, my weight is 165 to 170.

    5). Increased from a size 8 to 12.

    6). My age group is 40-45.

    7). Also, my abdomen GREW as if I am pregnant.

    8). Ladies stay way from the UFE & Dr. L.

    • Posted

      Hi McCo. Thank you so much for sharing your story. I also live in Atlanta and have been seriously considering UFE by the same Dr. L. I feel like UFE is my only option as I have anemia and terrible anxiety and am extremely adverse to invasive surgery (myomectomy or hysterectomy). Quite frankly, I'm terrified of something going wrong with both surgery and UFE. I had a consultation with Dr. L. nearly a year ago and felt that most of my questions had been answered sufficiently until I came home and began doing my own research. I am particularly interested in the concerns you listed as NONE of this was explained as a possible setback for UFE. In fact, Dr. L. only mentioned infection at the injection site, unresolved sloughing, premature menopause and non-target embolization (this is the worse possible outcome but he was careful to say that in nearly 7,000 procedures performed by him no pt. had this experience). I am in your same age group and roughly the same starting weight and would love your additional insight. Were your fibroids particularly large at the time of the procedure (one of my fibroids is quite sizeable)? I'm asking because it seems from anecdotal reports the larger they are the greater the complications. What is the time frame in which you experienced the symptoms 1-8? Did Dr. L. explain why you might be experiencing these symptoms during your follow up? Again, thanks so much McCo for sharing your story.

  • Posted

    DrPatient, thank you for sharing your story. Others keep mentioning weight gain after UFE. Have you also experienced this? What is it due to? For background, I'm 50 and scheduled to have a UFE in two months... Many thanks in advance.

    • Posted

      Hi Tracy40443,

      I didnt notice any weight gain tbh. If anything, I lost some weight. That might be because I also changed to a meat and dairy-free diet shortly before the procedure. Ive also never heard of a direct correlation between the two. No clinical evidence anyway.

      All the best with it though! Remember...2 weeks off work. At least! 😃

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.