Scheduled for UFE - Please help
Posted , 5 users are following.
I recently had an MRI and it showed one fibroid with a size of 8cm. Last month, I went to the ER bc for the first time ever, before my cycle was due, I had the worst labor type of cramping along with body aches and a low grade fever. A scan in the ER stated that my fibroid was about 10cm. I was told that symptoms I had experienced was degeneration of the fibroid probably due to its growth. I just had a menstrual cycle that was normal (no clots, no abnormal heavy bleeding, no cramping) for the first time in over a year.
Due to my lining being somewhat thick, I'm scheduled to have an endometrial biopsy next week to make all is well before doing the UFE. I am scheduled to have the UFE procedure next month. I'll be sedated for both procedures. I've been told about the pain which scares me bc I've never taken narcotics. I actually refused medication when giving birth to my three children.
What also scares me is the requirement to lay on my back for several hours. I suffer from anxiety and do not do well when being told I must be still for any lengthy period of time. Will I be able to move my arms, hands, and legs? Is it just a matter of laying on one's back while being free to move your limbs or is it akin to being in an MRI machine where you have to lay completely still? Can you twist your body at all? This really bothers me and I'm hoping they would be able to give me enough meds to knock me out during this time bc I have extreme anxiety just thinking about it
0 likes, 13 replies
linda96127 starmomma
Posted
I understand your worry. I had UFE two years ago I was extremely worried and read all the reviews. I had very heavy bleeding before the procedure and was anemic. The procedure for me was not as bad as it was in some reviews. I prayed a lot before hand and knew that I was in good hands. They will give you a light anesthetic during the procedure and you will not feel anything. I was worried about being awake throughout the procedure but it actually was fine . you do have to lay on your back after it but they give you a pump to give your self medicine when needed. You can give yourself as much or as little as you need. I did not have much pain at all because I stayed on top of the medicine. I would suggest trying to have a little bit of food in your stomach because I did not eat anything and vomited later in the day I laid on my back and spoke to my husband. It really went fast because we talked and watched tv in my room . I was able to move my arms . If you have anxiety, think about things that calm you such as certain types of music, breathing techniques, etc. and plan ahead . You will be fine .Most people on this thread are happy that they got this procedure done. God bless you for a full recovery from fibroids
Steffy3043 starmomma
Posted
Hi, I understand how nervous you feel because I felt the same way leading up to & having my UFE in December 2019. I also suffer from anxiety & had all the same fears as youve mentioned. I was told I would be sedated for the procedure but on the day they told me they needed me awake & I would only have a morphine pump to operate myself. I was so scared but the nurses were amazing & so kind. The one held my hand throughout most of the 2 hours It took & wiped my tears! (from nerves). They gave me a local anesthetic injection in my groin & then I could feel the catheter going in which felt really strange & I would say uncomfotable rather than painful. Every now & again the splash of the dye they use to see the arteries, which felt like hot liquid filling uour pelvic area. It feels a but like your going to the toilet & very odd but the nurse assured me it was just a feeling & I wasnt. I just gripped onto the sides of the operating table I was lying on for comfort when the nurse wasnt with me. I found it hard to keep my feet still which the radiolagist did pull me up on (I was fidgeting a but too much) . The radiolagist came to talk to me in the middle of the procedure to say he was having a problem accessing my ateries as they were spasming, so I was then given some narcotics to relax them. I cant remember much after that so I was glad I was given them to knock me out a bit, my blood pressure did go low so it tool quite a long time to bring me back around after the procedure. Im so glad I had It done though & I felt the pressure lifted off my bladder within the first week. My stomach has gone right down too. Ive just had my 3rd period which was still quite heavy but its still early days & can take time so some people to settle. I will have my scan in May to see If the fibroids have shrunk. I hope all goes well for you.
starmomma
Posted
Thank you for the replies. I already told them that I don't want any morphine. I've read some scary stories about itching all over, nausea, vomiting, etc. I was told that they can give me meds for nausea, pain, and anxiety to keep me as relaxed and calm as possible. I really don't want to see or be aware of anything during the procedure.
I forgot to mention that I am very anemic (almost needed an infusion a few months ago) and I have frequent urination which bothers me a lot so hoping for relief of that. I also wake up just about every night with my PJ's soaked from sweating. Has anyone experienced this? I tend to get hot flashes as well but sometimes it seems to be more anxiety related.
With regard to lying flat on my back, the doc said they can elevate my head and legs. Were you able to move/wiggle your legs or did you have to be super still? I tend to get pain and numbness in my legs if I don't move them for extended periods of time. I was told that the MRI showed that the fibroid is putting pressure on two veins in my legs which leaves me at risk for blood clots.
Steffy3043 starmomma
Edited
Hi, Sorry I wrote it wrong, they gave me Nitrates not narcotics when my arteries were spasming during the procedure. I am also amemic, my levels were at a 3 at one point so I felt so unwell. My levels have got better after taking 3 iron tablets a day for the last few years, I now only take 2 a day. Before the UFE i needed the toilet every 20 minutes , I couldnt go anywhere unless I knew there was a toilet near & was up at least 3 times during the night, it was awful. Since the procedure the pressure has lifted off my bladder & I can sleep some night all through. You need to lie as still as possible throughout the UFE procedure , I did find it hard to keep still because i was uncomfortable & very nervous but the Radiolagist told me I was moving too much so I tried harder to stay calm & breathe through it. You cant move about or anything. I did have vomiting from the morphine once I was back on the ward recovering , they gave me anti sickness tablets & they worked. I didnt itch or anything. I dont have night sweats, I only had them when I came off the Tramadol tablets in my recovery period at home which were withdrawal related.
starmomma Steffy3043
Posted
Hi! I go to the bathroom every 30 min or so, too! It's frustrating leaving the house because I always have to use a public restroom even when I don't drink anything! I wake up 2-3 times during the night as well to go use the potty. Also, with being anemic, I'm always drained. I have zero energy and feel very unwell as though life is being sucked out of me. I chew on ice ALL day. I was able to get my levels up when taking iron supplements and I've just orders some tabs to start taking again.
Question, you mentioned that you have to be still and can't move about during the UFE procedure. I will be sedated so I'm not too concerned about that but what about AFTER the procedure when you are in the recovery room? Did you have to be super still while lying on your back for several hours following the procedure?
Steffy3043 starmomma
Edited
Once your back on the ward or in your room (I was on a ward & in the UK) I was still out of it from the nitrates & morphine so I was in & out of sleep for a bit & then I was in a lot of pain & discomfort from the cramping which felt like when I was in labour, it would come in waves so I defietley didnt keep completley still, I stayed straight & on my back but I still moved my arms & cried. The nurses were there though & were supportive. Everywhere Ive read said you wouldnt feel like eating but by teatime after Id had the anti sickness & stopped the morphine I had eaten fruit, chips ,tea & biscuits! my appitite didnt fade at all in recovery. I slept from about 8pm & I slept pretty well, I think my body was tired.
linda96127 starmomma
Posted
I forgot to mention in my previous response that I was able to move my feet. I don’t remember if I wanted to move my legs or not but I definitely could feel them if I wanted to move them
starmomma linda96127
Posted
Thank you for sharing that with me as it certainly helps. With each passing day, I'm growing more anxious about going through with the procedure but I know something needs to be done bc I can't keep suffering from these fibroid symptoms. I just wish it was something simple as what I heard Acessa offers (minimally invasive with virtually no pain) but unfortunately my insurance doesn't cover it. Here's to hoping for a successful outcome.
Steffy3043 starmomma
Posted
I totally feel for you , I lived for years feeling completely drained & In pain, like I was no longer myself. Im 42 & didnt want a hysterectomy or any of the other more invasive options so UFE was the only option for me right now. I decided to start at UFE & pray it works. The one thing I will say is even though the pain of the cramping was bad it didnt last longer than a few hours for me & as I said I was eating by the evening & out of hospital the next day. I had 3 weeks off work but it was more discomfort, soreness & stiffness rather than pain from the day after, after about day 4 I was only taking paracetamol & diclafenac . I have no regrets so far from having the procedure & am hoping things will only keep improving. I wish you all the luck.
linda96127 starmomma
Posted
I had all of the same feelings as you. Trust me, you will be very happy that you did it. Your quality of life will be much better. ❤
starmomma linda96127
Posted
I sure do hope so because my QOL is awful right now. I just want to feel "normal" and healthy again. I am having an endometrial biopsy tomorrow and while I was okay up until this point, I'm super anxious now! They are going to sedate me so fingers crossed that I don't feel any of the "barbaric" pain that some say they experienced during their biopsy. Also, fingers crossed that all comes back okay!
kimjon starmomma
Edited
I had my first UFE in 2019. I did not move the entire time of the procedure. I don’t know what medications they put me on, but I didn’t feel the need to move, I didn’t try to move. Suprisingly, the procedure itself was the most comfortable part of my experience.
HTH
Kimjon
starmomma kimjon
Posted
Thank you for sharing your experience with me. I was sedated for my endometrial biopsy (all turned out fine which is a big relief) and I was taken to a recovery room after the procedure. I realized later that I laid on my back with no movement for about 45 min. I was told I will be given similar meds for my UFE sedation so hopefully I'll be drowsy after the procedure and sleep most of the time away.
I was supposed to have the UFE procedure last week but received a call from my doc's office two days prior informing me that all elective surgeries due to the Covid 19 crisis. I'm not sure when I'll be able to schedule an appt for it but I'm a little less anxious about having it done thanks to people like you all who have calmed some of my fears.