Post-UFE ....coming to terms with all that is happening inside me.

Women's health
1

After struggling with fibroids for over 10 years, I finally decided 3 months ago to get the UFE done.  Before, I delve into my experience with the procedure, I want to talk a little bit about my journey.  I had an absolutely useless OB/GYN who didn't offer the UFE as an option, but almost exclusively pushed having a hysterectomy.  She prolonged my condition by using watchful waiting which is nuts.  She put me on Lysteda and that is after I got really mad because I was bleeding so much. She would have me do an ultrasound every year, but that was it.  When I said I wanted to get rid of them, she would say my only option was to have a hysterectomy.  I was firm and said I wasn't going to have that done.

So, in August 2017, I did some research on my own and found a lot of literature on UFE and set out to get it done.  This stupid OB/GYN kept stalling and sent me to another stupid OB/GYN who only wanted to convince me to have the hysterectomy.  I told both I wasn't going to even consider it until I had tried the UFE.

I then contacted the IR department, went for my MRI and got an appointment for the procedure.  MRI revealed that I had very large fibroids that had overtaken my enter uterus.  I gasp when I saw my film.  I was almost in tears, when my IR said it was okay and that he would get them all taken care of.  

UFE Journey:

Procedure went very well. But once I was off the epidural, that's when all things hit the fan.  I was in great pain.  So much pain.  I was constipated and very uncomfortable. They gave me more pain pills, but they weren't helping and that was because the pain was gas pain from being so constipated.  I couldn't eat that whole day after the procedure.  I was in agonizing pain that I had never felt before.  I cried until I couldn't cry anymore.  The nurses weren't helpful.  They seemed irritated that I couldn't manage my own pain.  My IR and his team came by but they too seemed perplexed as to the degree of my pain.  I felt so alone, but God was with me as one of the night nurses came on and got me some laxative and enema.  I still couldn't go but I was letting out gas, so my pain started to subside.  For the first time I was able to sleep after the procedure. 

By the next morning, I was relatively pain free. I was discharged with instructions and medications.  I went home and went on a long walk very slowly, and then I had my first bowl movement by the third day I felt so much better.  Luckily I took two weeks off, so that enabled me to rest and recover some more.  For the next week or so I experience no pain.  I went back to work after my two weeks and felt good.

First Month:

Hardly had a period and there was no pain just occasional discharge as expected as the firbroids started to dislodge.  I felt energized....no more anemia and I could sleep very well at night.

Second Month:  

Had my first real period and that's when things changed.  I started having more cramps ...really painful cramps and got back on my ibuprofen (600mg).  My period was not as heavy as I have experienced before UFE, but it was more than the previous month.  I didn't panic as I was advised this would happen. I got to know when to expect the pain and take my meds before it became too much.  Even with the pain, I still felt better off because I didn't need to take the Lysteda cause I wasn't bleeding like before and I could control the pain.  But discharging the fibroids was another thing.  I would have severe cramps then pieces of one would discharge.  It has been going on all month into my third month.

Third month:

Little or no bleeding, just discharging of fibroids and more cramping.  At times the cramping gets very painful, but this usually happens at night.  I control it by taking an ibuprofen.    Other than this, I am doing very well.  My stomach is shrinking and my clothes are fitting so much better unlike before UFE.

I just wonder how long will the discharging of the fibroids continue.  I see my IR for a post-op follow-up in February.  

It has been a journey and I am very happy that I chose the UFE as I see my life getting back to normal.  I recommend it for anyone who wants an alternative to the other recommended procedures.  In hindsight, I should have had it done years ago, but I trusted my OB/GYN and I regret that I did.  Many of these OBs don't present UFE as a viable option because they want to perform hysterectomies.  I never went back to my OB.......  

 

2

 Your story is exactly like mine. You are totally not alone. The only difference is that after my UFE, and after the shrinking started, it stopped with me. The fibroid I had at 14 cm grew to 16 cm because it found new arteries. However, because of the UFE I was able to get  a myomectomy. So now I am two weeks post op, still off work. Apparently the fibroid got so big that it tore a new hole in my uterus. I’m just grateful I was able to save my uterus. I know it sounds a little crazy, but Unless I had cancer I really did not wanna leave my uterus. I really hope this doesn’t happen to anyone else.

3

Oh wow, so glad you are home postop and recovering.  I feel you on if there was no cancer, I wanted to keep my uterus.  And almost all of these fibroids are non-cancerous.  So many women are inflicted by this condition and the world of medicine hasn't devoted more research as to why they occur and compile very good information on all of the procedures, so women know what they can expect.

Many of the OBs too are part of the problem.....my fibroids were caught early, but she waited for them to get very big with the hopes that I would have to give in to having a hysterectomy.  

Wishing you a full and healthy recovery.  You are on your way......

4

Exactly. I also know about high frequency ultrasound. Basically using sound waves that break up a fibroid. No invasive surgery. No downtime. Unfortunately, it isn’t available in Canada. The US charges 10-15 K USD to do the procedure. Too rich for my blood - but it is an option. 

5

I sent you a more detailed reply, but maybe because I included contact information for hospital, it's being reviewed. In short, they do MRI focused ablation in Toronto at Sunnybrook hospital. Second, a fellow at Regional hospital does Global Focused Ablation, which is a day surgery inserting a want into the fibroid to deliver the energy waves directly into the fibroid. I would opt for the SUnnybrook procedure if it suits you, and Ontario is supporting this procedure be made available in a new report.  Hope that infomration might be helpful, and if my other reply is published, there's a little more info. Best wishes, from a fellow Canadian -- NS. 

6

Hi Jaime,

It’s really nice to meet somebody on here that does their research just like me! There was a doctor that I had it up to study from Phillips. It was a private study and it out with high frequency ultrasound. However after speaking to her, I was told that the funding to do it publicly was not available until approval from our minister. Needless to say our health minister has been sitting with the study for four years on his desk.The same doctor put me on a waitlist for priority when a new study was offered up. Problem is it’s being funded privately and not with public funding. It’s extremely frustrating. On the male issue side, There was a mirror in Hamilton who was quite vocal about our minister. He had to travel to Germany to get treatment for his pancreatic Cancer. The same treatment ironically, that would be used for fibroids under high frequency ultrasound.  So, he often uses his Twitter account to share how our  country  is hiding these things and actually killing people.  It’s very frustrating. I decided to go ahead with  the myomectomy Because my fibroid literally grew the size of two hands. I find that this is unacceptable. I’m so upset that so many women have this problem and sadly, it is ignored by medical community. I have a feeling, actually more than a feeling, that it is in their better interest not to find the reason that this happens to us because the money is in the treatment, not the prevention.

7

Hi BellaOne,

My experience was similar regarding the gynocologist.  I was shocked to only have ONE option of a hysterectomy, and I was in my late 40s at the time, there was no way I was losing my uterus (unless there was cancer).  Once I was my 50s, I was so tired (due to anemia even with some iron supplements) and uncomfortable to do aerobics or stomach crunches with what ended up being 4 fibroids (one over 10 cm).  My husband & my Mom looked into other options (as did I) and found UFE.  We all did our research between books & the internet.  Then I brought this up to a new gyno, who said that she would do, yep, a hysterectomy.  I did not even waste my time making another appointment for a follow-up to talk about my options since she knew no other surgeries.  So, my husband found a radiologist who specialized in UFE.  We went to her and she gave me such hope.  I only had the procedure done 3 months ago.

Regarding the procedure, it went well, however, my problem was vomiting for 2 days due to medication that they were giving me.  Funny anti nausea meds made my stomach turn.  sad  Anyway, my husband called a pharmacy and the pharmacist said that there was an anti nausea sublingual pill.  Whew!  I was exhausted and dehydrated.  By the way, I had the procedure done at a hospital and released the same evening.  The only pills that I took for the cramping were Ibuprofen and was feeling good by the end of the week (my choice).  Thank goodness my periods were light, no more diaper like paraphernalia, and my iron count is becoming more normal.  Also a plus for me, I was back to exercising 3 weeks after surgery (lighter than usual).  I found walks helped big time..time to take in the air and think about nature.  Oh what helped me get through most of this was a meditation "tape" 2 weeks prior and 2 weeks after.  

This gave me life again.  Lesson One For Me - Gynocologists are great for many things, however, they do not practice the UFE procedure.  Lesson Two..I learned about all of this support out there, but had no idea since some women tend to feel this to be a private issue.  I talked to all who would listen.  smile  Sorry this is so long, but if you & anyone on this site needs hope, hoping my story helps.

I am not 100% sure if the fibroids are leaving my body, but I can tell by feeling that the large one has shrunk.  I probably should see my gyno for a yearly visit and ask what she thinks.  Did you have an MRI at the 3 month period to find out if yours shrunk and gone?  

8

Hi Scubagal,

Thank you for the information on the high frequency ultrasound for the U.S.A.  I live there, but even too pricey for me.  My UFE was too expensive too, so not sure how that will be paid off. Mistake I made was not asking how much the hospital was charging because that was a separate bill from the specialist I used.  Live & learn!  smile

9

Geez. I shouldn’t complain, I am sorry.  My UFE was free, and so was my myomectomy. 

It is even more upsetting hearing that you have to pay for those procedures. Really, I am truly sorry. 

10

Hi Scubagal,

Such is life in the U.S.A. We go with the flow and do the best we can. I know that Canada & the UK both have higher taxes to pay for any medical care, so you don't feel it as hard in the old pocket. I was shocked though that the procedural room was over $20K, thank goodness for medical insurance.

What type of specialist or doctor did your UFE and myomectomy?

11

Well, for the UFE I had an interventional radiologist. When my fibroid continued to grow, I went to see a gynocologist for the myomectomy. I was really lucky because he was the head of a very big hospital here in Toronto.  Lucky because when they went to remove my two-handed fibroid, they discovered it tore a hole above my cervix. They had to reconstruct my uterus. Imagine that? The crazier thing is that even though he was the head - he had only seen something like that one other time. Lucky for me I wasn’t his first smile

12

Wow, very similar experience indeed.  No, I haven't had an MRI yet.  It is so expensive even with insurance.  I can tell the very large one is shrinking day by day.  I am wearing my clothes that I couldn't wear 3 months ago before the procedure.  I wil see mu IVR in two weeks and see what he says.  

OBs don't recommend UFE because they don't perform them I guess, but that is terrible.  I suffered for so long when my OB could have presented it as an option.  

How was it for you discharging the fibroids?  I have to wear a pantyliner because I still get fibroids expelling. 

Overall, I am very happy for the first time in years as I get back to how my life use to be before the invasion of fibroids.   

13

Scubagal, 

Wow, I cannot imagine needing to have a uterus reconstructed due to a fibroid doing such damage.  I am glad that you found someone who had some experience, and you are doing fine.  Thank you for sharing! 

One of my fibroids was submucosal and the Interventional Radiologist told me that it is possible that it will pass on its own, but may need a D & E or hysterectomy (which I have been avoiding since I'm not down with that idea).  I am not having any more kids, but I don't want complications or even worry about them.  I do have Diabetes Type 1.5 (occurred in my mid 40s), so I need to be a little more careful.

Thank you for your reply.  smile  Have a good weekend!

14

Hi BellaOne,

Correct on the OB/Gyno's not performing them.  It is just something that they are not exposed to during their residence, I suspect.  At least there is some talk on this forum and in books for women to learn about other options to relieve them of their pain & discomfort.

As for me, I had to wear a pantyliner until the end of my last period last month.  I am not seeing any discharge at this point.  Honestly, I know some women knew that the fibroids were passing (from what I have read on this forum), but I have no clue.  sad  I know I had a light brown discharge from day to day, but was there any other indications that you are able to share?  

Overall, I am thrilled that I went through this procedure.  I have more energy, light periods, and comfort in exercising now.  As you mentioned about your clothing, I found that my stomach does not protrude as far, but still look like I have a pouch.  Of course, I am middle aged, so my expectations may be high.  lol  I'm still guessing that I'm not out of the woods yet since I've only hit the 3 month 2 week mark post procedure.

I wish you the best with your daily dealings with post procedure stuff (cannot think of the word, sorry, so used "stuff"wink.  I'd love to know how your visit goes, if you feel like sharing, of course.

 

15

Hello Bella

Thanks for the information. I have a 9 cent fibroid a big one and a bunch of smaller ones. I am scheduled for ICE as well Feb 15 I am so terrified. The same thing happened to me 5 yra ago they just said waot it out and now it's huge. I didn't want the surgery. I hear of the recovery so prayer for your success to recovery. My heart beatsbeatS even now I am really scared. I also had a blood transfusion and thought I was going to die a little over a month ago.

16

Hi Kristen, don't be terrified.  I struggled with this condition for many, many years and was made to believe that having a hysterectomy was my only option until I discovered UFE.  I too was scared, but continuing to live with how bad I was feeling scared me more.  I am feeling so much better now.  Decide on what procedure is best for you and go forth and trust that all will be okay.  

I too had to have a blood transfusion.  I felt like I was going to die too.  Another big neglect by my OB who knew I had terrible fibroids and great blood loss as a result, but she failed to check my hemoglobin regularly which would have caught the fact that it was getting low way before it got to a dangerous low level. 

I would never use another female OB again.   

17

Thank you Bellaone

It's nice to have other womens support although I dont personally know everyone on this site I know they relate where friends can be good but they don't get it. Both of these obgyn were female. One said wait it out. Now the other one newer just wanted hysterectomy. I may have to do it one day but not now. Thanks for your kind words.

18

Hi Kristen,

I wish you the best in your decision. My fibroids were 2 cm - 13 cm (4 in total) and uncomfortable at times. I did not need a blood transfusion, but had many days prior to the operation where the anemia was problematic.

I hope you are feeling stronger soon.

19

Thanks Cindy

Hope you are having a good and healthy recovery.

20

Thank you (and others) so much for your responses. Two years ago I was hospitalized overnight for hemorrhaging. My OB found an 11cm fibroid, and went straight to the hysterectomy route. I refused and just dealt with my crazy heavy periods. She was a bit p***y with me. Fast forward to this last October, and my new family doctor thought something seemed off about me and ordered all sorts of tests (my appointment had been made for asthma). I received a frantic phone call the next morning ordering me to the ER for a blood transfusion. My doctor was furious that my OB had not ordered any iron or hemoglobin tests since my hospital stay. As she continues to push for a hysterectomy, I now feel that after research of my own, and this thread, I can confidently leave her and have this procedure instead. I'm so done with feeling sick.