Fibroid embolization experiences

Women's health
1

Hi!

I have a 6x6 cm fibroid which causes me heavy bleeding and pressure symptoms.

I will be seeing a doctor in two weeks to discuss treatment options as I refuse hysterectomy.

I'm 39 with no children.

I've been reading about embolization and would really like to get in touch with other women who have done this procedure. Has it worked for you? Has your bleeding (and life!) gone back to normal? Has your fibroid shrunk, if so by how much? How was the pain? Do you recommend embolization?

Looking forward to your replies!

Have a good day ladies!

2

Hello 😊recently is a diagnosed with a 2.5 sub mucousal fibroid which also causes me heavy prolonged periods.is yours a submucousal one? I have researched and for this type of fibroid you can have a hysteroscopy which is a simple procedure.what is a embolisation please?i have tranexamic acid tablets which help greatly if I take it on time,but like this month I forgot I am on now day 9 of my period !!! Hope this helps take care Michelle x

3

Hi Asa,

Like you I'm 39 with no kids.

I was diagnosed last year with fibroids, 1x13cm and 1x5cm causing heavy periods to the point of being unable to leave the house due to flooding and suffering severe anemia.

I had an embolization Oct 19th last year and to date I would say that most of the pressure symptoms seem to have lessened in that I don't have to get put of bed to go to the toilet 3-4 x during the night.

My periods do seem lighter but are still a proper period. I suppose I expected them to be really light which was naive but I do feel a bit more confident leaving the house.

Before the procedure I would flood through both a tampon and pad even hour if not 30 mins now I change every couple/few hours.

Still early days and am due a follow up in April to see if they have stunk. I was advised that at the 6mnths mark the fibroids would have shrunk as much as possible.

As far as the procedure was concerned it wasn't painful due to the painkillers your given before and during.

Near the end of the procedure I did feel cramping like bad period pain which I advised the radiologist. I was given more morphine before returning to the ward where I had to stay still for 6 hrs.

The 6 hrs flew by to be honest I was so tired and wiped out it felt like hardly any time

One watch out I wansnt prepared for was when you are able to get put of bed make sure a nurse is there to help you. I couldn't reach my buzzer and was so dizzy and nauseous I nearly fell over.

On the nausea note I was so sick because of the morphine. I was fine when I was lying down but as soon as I sat up I threw up.

It takes approx 21hrs for the morphine to leave your system so be prepared for that. No one told me about that beforehand.

I was in overnight and got home the next afternoon. First night again some cramping so take the pain killers your given they will make you really sleepy. The first 3 to 4 days I slept allot bur after that it was just taking it easy.

I got slight cramping during the night for the first few weeks but really nit bad and now only very occasional during the night I get v.slight cramping.

I would recommend this as a first option without doubt. Other options for me where far too invasive and the recovery time much longer.

Fingers crossed they are still shrinking!

Good luck.

4

Hi there,

I think what type of fibroid you have makes a difference. As said below if it is a submucosal you might be able to have hysteroscopy but then the size of it may mean taking a temporary shrinker tablet such as esmya first.  I have had hysteroscopy but for a 2cm fibroid, but have not had embolization. I do wonder if that is available on the NHS in England. I am aware of it but it wasnt mentioned in my appointments. I have been taking esmya a tablet that can help shrink and that is newly licenced this year. It also stops periods  (in most cases ) for the three months you are on it. (So that can help if you have or have had low iron/anaemia ). I like you am interested in anything non surgical. I am keeping with intermittent use of esmya to manage at present. When you get to menopause they are supposed to shrink but we do not know what age that will be at, only an idea. You are further away than I am.   I have a 5.5 subserosal fibroid, on outside of uterus they do not tend to impact on the bleeding as much as the other two types of submucosal and intramural.   Good luck.   

5

Hi! Oh, I'm considering Esmya too. I'm just a bit scared of how they would make me feel considering it's affecting the hormones. Do you have any side effects from taking them?

I'm not sure what kind of fibroid I have. I think my previous gyno has been talking about it being embedded in the muscle.

I've read somewhere that fibroids only shrink by 10% when we reach menopaus. Does anyone else know if that's true?

6

Hi! Embolization is a less invasive procedure than surgery. There is alot to read about it on the Internet if you search for Uterine Fibroid Embolization.

I think my fibroid is embedded in the muscle so I don't think a hysteroscopy is possible for me I'm afraid. :-/

7

Thank you so much for your reply! Please let me know how it goes after your next follow up! I'm crossing my fingers for you that they will keep shrinking.

I think, and hope, that I can deal with a week or two of pain and nausea if it means getting rid of how it is for me today.

8

Hi there,

I had UFE on 21 December. For five years I suffered but was told it was either all in my head or I was constipated. Seriously. No one scanned me and only one doctor even touched me. My primary complaint was bladder related. I felt like I needed to pee all the time. Very little would come out. I got up about 6x a night. I had no quality of life. At the same time, my periods got heavier, longer and more frequent.

In September I went to A&E with acute urinary retention. This happened five more times. My GP seemed to think it was taken care of by teaching me to self-catheterize. I could not live with such pain, pressure and fear. My husband and I borrowed some money and went to a private consultant, who did an MRI. This revealed a 12cm fibroid the shape of a rugby ball sitting on my bladder.

Within three weeks I had UFE. It has only been three weeks since the procedure but I already feel better. The procedure itself is not bad at all, but I had excruciating pain immediately afterwards. This is quickly taken care of with morphine. I was on morphine for about 24 hours and it does make you nauseated. I left the hospital less than 48 hours after the procedure with pain controlled by paracetamol and just a general washed out feeling. This is normal.

Actually, the more pain, the better, as it means the fibroids are dying. My doctor and the nurses told me this.

If you are a candidate for UFE, I highly recommend it. I will have my first scan at 8 weeks, but the bloated feeling is already gone, my bladder is slightly better and I am completely recovered from the procedure. UFE is available via NHS but your gynaecologist will likely steer you from it. Mine said my only option was a full hysterectomy. Uh, no, it's not and I demanded a second opinion (which I got privately).

I am 46 with no children. Let me know if you have any other questions. Good luck!

9

Wow! Thank you so much for your reply! How horrible that no one did a proper check up on you!

I live in Sweden and have been taken good care of the past year thankfully but it takes a lot of energy having to fight for your uterus. Now a year later and several gyno-visits later I am finally going to see a doctor in a big hospital and I know they can do embolizations there so hopefully they have empathy and will listen to what I want.

Otherwise I will seek privately too somewhere.

Please keep me posted on how the follow up goes and thank you for telling me your story! All the best!

10

Mine is inbedded in my uterine cavity he called it a sub mucousal fibroid.hysteroscopy is done under a local anaesthetic and as an out patient.bloody nuisance aren't they.do you suffer very heavy prolonged periods?

11

Hi there, It sounds like you have an intramural, I have some of them too but many smaller ones. They cannot be taken out by hysteroscopy.         I was not too affected by the esmya, it is preventing the progesterone from getting to the uterus is my understanding, I believe but not impacting on the oestrogen so the view was and others it does not affect you as much as GRNHAs as they can pretty much bring on menopausal symptoms but esmya doesnt. I was prepared to try it as medication is less risky than any surgical intervention in my view. Luckily, the ocassional headache and tiredness were my side effects and if they shrunk the fibroids enought to reduce the symptoms I felt it was worth trying. Anything to avoid a hysterectomy. Of course we all realise it is our choice and no-one can make us have a hysterectomy. It is our body, but of course we are looking for quality of life.  My understanding was that fibroids pretty much diminish when you get to menopause, of course it varies person to person but certainly much more than 10%.  If you read the internet about fibroids it will tell you about when you reach the menopause from medical sites. My consultant also has the view they pretty much go or do not affect you then in the majority.   

12

Hi murnaloo, it does seem hospitals want you to have a hysterectomy and its something everyone needs to be aware of. If I needed to go down the surgery route if things become worse I would ask for embolization to be considered and ask for a second opinion etc. I had to ask for the esmya it was not offered to me.   I am so surprised that you were not offered an ultrasound to see if you had fibroids as a first measure.  Everyone has different experiences. It seems to depend who you see and what you say are your symptoms.    I think if you are worried it is good to get an MRI privately if you can afford it. I did that too. Ultrasounds can show but not always clearly.

13

HI again, it seems someone else is saying 'embedded in uterine cavity' is a submucosal. I do not want to confuse the issue. I have had both. Maybe yours is a submucosal then.       My understanding is that submucosal is within the uterus/womb and intramural are in the uterus also but in the walls of the uterus (hence why hysteroscopy cannot get them out)   

14

I am so sorry to hear you suffered for so many years, that is also the message I was trying to portray in my response too and thanks for sharing that. 

15

Bloody nuisance, oh yes! I

have alot of bleeding especially for like 48 h. Then it gets better but after that follows a week of pink/brownish discharge. No fun at all.

I need to eat iron pills for a couple of days each month. I had iron defiency when the tested me last year. I hope to get rid of all of this soon, I'm sick and tired of it!

16

Hm. Esmya sure does sounds like an option for me. Has your consultant had good success with treating others patients with it? Do you know?

17

 Hi, I'm using voice recognition so I apologize for the typos. I had embolization done three months ago. I just had a repeat mri and my fibroids shrank  65%. Originally it was 10 cm and I had extremely heavy bleeding and was anemic. I am 51 years old and   The procedure put me into menopause.  it was extremely painful for  me for an entire entire week!  The cramps are no joke!   I think the procedures best for intramural fibroids mine turned out to be submucosal and as a result I am having a lot of discharge even three months later. However the doctor was impressed by the reduction in such a short time so I am hopeful it will continue to shrink and the discharge will stop 

18

It wasnt initially offered as it was only licenced pre-operative in the UK for 3 months only until you had an operation, up until the latter part of last year. I made my request and decision to try it based on examples and research I saw on line . I saw the studies on line published by the EMA for its safety testing, but it is a new drug for ongoing intermittent use. The Drs did say it is supposed to be good they did not have examples of individual cases, I think due to it being quite new for them to use in this way. I was asking them for it rather than them promoting it to me. They just want to promote a hysterectomy to me. The first Dr I mentioned it to did say it was good and there is a lot going on with it now, i.e extended licence for longer term use. Have a read about it on line at their website etc. I saw an article on line from a woman who it worked well for her and stopped her from needing a hysterectomy, that prompted me to look into it further        

19

Hello, I also had the embolisation procedure in September and I recommend it whole heartedly.  I suffered with extremely heavy bleeding (had to wear 3-4 pads at a  time and change every 2 hours during my heavy days), pressure systems, frequent urination and fatigue. 

After reading about the options I decided to go for UFE because I felt it was less invasive but had a good chance of reducing my symptoms. 

The procedure itself it relatively pain free, but for me the intense pain started about 30min after the procedure and lasted about 24 hours.  It was a difficult day/night but they give you lots of medication which helped and I wouldn't have been able to manage without it. 

I went home the next day very tender and exhausted, but could already feel a difference.  I couldn't feel the fibroid that rested near my bladder anymore and during the first week I realised I wasn't waking up in the middle of the night to go to the toilet.  My first period was so light I wasn't sure if it was a real period or not, but all my periods since then have also been very light and I can't believe what a difference it has made to my life.  I only need to wear a normal pad on my heavy days instead of 3 extra long/heavy and then wear pantyliners for the rest of the time.  I have lost 10 pounds and I feel much better.

The procedure should not be taken lightly though.  Even though it is less invasive it is still very hard on your body.  I went back to work after two weeks but could have really done with staying home 1 more week. And I didn't really get all my energy back till about 2 months later.

I made sure I thought about all my options before I saw the specialist because they like to only recommend hysterectomy, but once they saw I had made up my mind and seemed informed about my choices they didn't push me.

Overall I am very happy with the results.  I hope you will be able to find the best one for you.  If you have any other questions.  Do not hesitate to ask.

Good luck

20

Thanks for sharing that experience. Glad it worked out well for you.