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 someone..it certainly helpsu me to put it out there!
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jetwaterfitness DrPatient
Posted
I wanted to thank you for sharing your experiences. You are the first to share that your fibroids got bigger after the experience. I had a fibroid ablation in May and by June I was hemmoraghing for days (15), then I was put on progesterone to stop the bleeding. 4 weeks ago I started bleeding again and it was so bad I had blood clots pushing the super plus tampon out of my vagina every 15 min. I was put on transemic acid to slow the bleed and as soon as I stopped taking it ( my surgeon had told me she woke up my ovaries so I was menstruating again but the bleeding never stopped). I ended up in the ER and my fibroids which are clumped together have grown 2 cm and have cystic degeneration now. My endometrial lining went from 6mm to 11! My uterus grew 3 cm. But my surgeon wants in and tells me she is very concerned now about my fibroid. It makes so much sense that she is the cause of the growth of everything but she didnt see it that way. She said fibroids dont get bigger after ablation. I say BULL SH*T. Now I have to see a surgeon to talk about a hysterectomty