Post Fibroid Embolisation

Hey Heather34376,

What state do you live in?

Hi Lynn, I'm in the uk.

Darn! If you were in the US I could recommend a good doctor.

Hi heather, I'm in the UK and I enquired how much it would be to go in the night before my procedure at a private hospital. I was quoted 650 for the night and that would be without nursing care, meds etc. It would be cheaper to stay in a hotel locally. A lot of consultants don't like u to stay in hospital unless it is medically necessary because whilst u are in hospital they are responsible for your care. I live 2 hours away from where I am getting my 10cm fibroid done. I don't know aboutt the nhs but I would think they will kick you out asap as they need the beds.

Hi, whereabouts in the UK are you? I've just had mine done at an NHS hospital in Worthing and had an overnight stay. The surgeon who did it also works in Brighton. Not sure if that's near you but you will need to stay overnight if you have this procedure. It's definitely not day surgery. 

Hi Louise, Have you had your procedure yet or when is it? If you have had it how did it go? I've now seen the interventional radiologist who is doing mine, he's done alot. He says 90% of women who have it are cured or feel a whole lot better. I know this procedure isn't a walk in the park re pain but in my opinion is a better option than hysterectomy. The travel does scare me a bit though as it took me 11 hours to get home on Friday with what should be a 6 hour journey. I'd just have to do it overnight (for less traffic) My consultant said they decrase to about half the size, they all start from a single muscle cell & they leaveIa ball of scar tissue which is about half the size of your original fibroid. If you have had yours when did you do the 2 hour journey home? If not what are your plans. Again I just read it really matter who does it, so I wanted to go for someone really experienced even though he is a long way from home.

Hi heather, I've not had it done yet. I've been suffering bad anxiety so have had to delay it. Will need to get it done soon though. Where are you having yours done?

Hi Louise, Me too, been worrying & delaying having anything done for years. Done the Esmya, didn't reduce, done the Zoladex didn't reduce, now onto the Esmya again to decide re embolisation, stoipped it at the beginning August. Yes no monthly cycle but no reduction. So still pressure symptoms.

I posted a partial reply as I'd posted a full one & the site crashed! So I went to see special interventional radiologist last week. He was very confident in the embolisation procedure. He said for me two choices & the other is hsyterectomy. I'd like to avoid that if I can. He said recovery is very painful for the first few days, but that 90% of women feel cured & get their quality of life back.

So my main worry now is the longer I delay it due to fear the bigger the fibroid gets. He said usually once the fibroid dies, it shrinks to about 50% its size so for me as it stands that's about 6 1/2 cm which is a bigger end result than some people start with, so if I'd had it done years ago, then I'd have had a better result. However I'm thinking I wasn't as bothered with it in the early days, so hopefully the same will happen. Plus it wont grow back & I think I'm right in saying no other new ones will form. So yes no walk in the park pain wise but hopefully I will be one of the 90%. He said he'd done fibroids way bigger than my 13x12cm with great results. It didn't phase him at all. I'm not 100% how long it takes to shrink 6-18 months. So there is a degree of excitement regarding I'm actually finally doing something about this! It'll be November (ish) I think.

He said it's scar tissue that's left, so it stays, but that compaired to the mobidity thats associated with hysterectomy, this is the best choice. Then I can decide on next steps if required after giving it a s try. I suppose, you can always have an operation to take the scar tissue away if necessary, or would be more likely to have a keyhole hysterectomy if required with a smaller dead fibroid. Anyway decision made here goes! Keep me up to date with your journey. Good luck. Doing something must be better than doing nothing & being on drugs to reduce it isn't nice, didn't work for me regarding reduction, stopped my periods but the drugs still made me feel tired sore, achy & a host of other side effects which I endured for months. This may be horrible for a few weeks even months, but hopefully there's a result re reduction within 6-12 months. Which after 6 months of Esmya & 6 months of Zoladex & another 3 months of Esmya which as been 2 years (by the time I've allowed for breaks, cycles & appointments) have kept it a simillar size, maybe even a slight increase of decrease. All I do know is that all it's doing now is getting bigger, so I've gotta do something, as without a hysterectomy whatever I'm left with is bigger, the bigger it is to start with. Hope this helps you, I know what it feels like to be anxious, I have a host of other medical things that I could consider delaying with, but my fibroid is probably the cause or at least contruting to making those issues worse. Hopefully time to take control, stop worrying, make the best preparations I can before. Yesterday was day one of calorie counting as I've a load of weight on with worry & hormone drugs, so a couple of stone off before it will help, as I'm sure to loose weight after the procedure for a few weeks too. If my BMI is to be believed I'm twice the weight I should be! However regardless of that, bit by bit & a couple of stome off by the time the procedure comes round in the next couple of months has to be a step in the right direction & would be around 1/3rd of what I'd like to loose. Once again good luck & keep in touch. (I think my breathing issues could have a lot to do with weight & anxiety about stuff) Re-staring my life x

Hi. I am in the US. What doctor do you recommend? I'm in the north west.

I had mine on 2nd June and just feel exhausted all the time still, I also have headaches. I was told I would be back to normal in 2 weeks, this is not the case and my first scan shows hardly any change, I am having another scan in September. I also still have pain in my groin area where they went in, it's easing but still noticeable x

Hello KC,

While your body is healing you will feel exhausted. I felt drained for about 3 months and then my energy slowly returned and I started feeling like my old self again. 10 months later and I feel great.

Give it time and keep voicing concerns to your doctors to ensure all is well.

This is all new to me...sometimes I have pain and tingling near my incision site. I suppose that is normal as well. I wasn't thinking it would take soo long to heal. But I suppose it is.

Thank you angel368! I appreciate the support. You are right it does take some time to heal. I am slowly easing back into working out but I just feel soo exhausted and that is normally not the case. My nurse has been wonderful addressing my concerns. Are you or did you have hot flases as well?

Hi KC,

I mostly had night sweats before the procedure, they eased off after the procedure and became less intense and less frequent. After charting my symptoms I noticed the night sweats were only occurring one or two nights before my period was due.

Ok...I see...I have some stomach discomfort the week before my period. I also still have the frequent urination as well during that time. I thought this was the reason we had this procedure...LOL

I get very tired a few days before my period and get mild cramps sometimes also. The urination is fine for me no issues there. The symptoms I do have are all less intense than before procedure and instead of occurring every day they are now limited to a few days before my period so I feel I can live with it. Are you scheduled for a follow up scan or MRI? I think they usually do them 3-6 months after the procedure if you are still experiencing symptoms.

Hi angel368...sheesh, I spoke to soon about my UFE being a "success". I swear last night I was in soo much pain my heating pad didnt even work. It is that time of the month but last month was a little milder but this one....WOW. I didnt sleep well at all and had to end up popping pills today to make it through the day. I want to do nothing more than sleep right now as I sit in my office. Oh well... I am just into month 4 but good grief. I need a vicodin or something for the pain....especially last night!!! 

Hi KC,

Sorry to hear the last few days have been rough. I haven't been feeling great today either. Feeling very weak, stomach cramps back ache. I know it's hormonal/premenstrual and trying to remind myself that my symptoms were a lot worse before UFE and occurred every day.

So just resting and feeling sorry for myself :-) Luckily I am on holiday right now.

Try to make an appointment with your GP to see if they will prescribe you some stronger pain medication for when you need it.

Take care and hope you feel better soon.

I had my procedure sep 2016 and having cramps like I had perform the procedure and my sides hurt. Could it be my fibroids are shrinking?

A strong possibility but I would check with the hospital where you had it done.. This would give you peace of mind too! You should have a contact. Speaking to the hospital is better than the GP as he/she would probably refer you back to the hospital. Any issue that I have I always contact the Sister who looks after the embolisation procedure