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Has anyone had fibroid embolisation?

(41 Posts)
TheBeanAndTheBee Fri 12-Apr-13 11:43:06

I'm keen to avoid a myomectomy or hysterectomy if at all possible. Has anyone had experience of this procedure? And if so could anyone recommend a consultant in London.

I'd also love to get a realistic idea of recovery time. I'm 40 and have a 2 and a 3 year old, how much time would I need help with them for while I recover? Thanks in advance.

LadyMaryQuiteContrary Fri 12-Apr-13 11:49:30

Hi. They usually recommend the drug Esmya before they do anything, it reduces the size of the fibroids so you may avoid surgery as they don't tend to grow (so the studies say). I've been taking them since January. They did shrink initially but I've no idea what's happened as my stomach seems larger than before now (they can cause the endometrium to thicken so it's possibly this. It should go down when I've finished the three month course). I've not had them embolised, the hospital here prescribed this first. I don't know anyone in London but can give you some contact details for someone in Nottingham if you're able to travel.

TheBeanAndTheBee Fri 12-Apr-13 11:59:24

Oh that's interesting thank you I didn't know there was another option, has not been suggested to me previously, I wonder why? The only thing that was suggested was the mirena coil, but because of the fibroids position they can't get the coil in.

So is this a pre-op treatment for you? (having quickly googled!) Do you know what you are going to do when you finish the course? Or are they hoping it will have shrunk them enough that they don't have to be removed?

Any side effects with the drug? Is this a hormonal type drug do you know?

Sorry lots of questions! smile

LadyMaryQuiteContrary Fri 12-Apr-13 12:08:54

It's a very new drug. I think it was only released for prescription at the start of the year and they are still testing it. They are hoping they shrink enough so won't be a problem, thus avoiding the need for embolisation or surgery.

There are side effects though as they basically give you a temporary menopause. I haven't had many though; was a little short tempered at the start and had night sweats and aching legs but that was it. I haven't had an af since I started taking them (fab!) but my uterus seems massive (possibly due to thickening which is another side effect). The side effects can vary though and it can cause excessive bleeding in some. It is a hormone ( info ) but they only prescribe it for three months so you still have the option of embolisation if they don't work. Fibroids are supposed to stop growing after the menopause anyway as it's excessive estrogen that feeds them (so they say).

TheBeanAndTheBee Fri 12-Apr-13 12:37:42

Thank you very much for all of that info, would be interested to know if it's successful for you when you get to the end of the course, if you wouldn't mind sharing?

I'm really reluctant to take any kind of hormonal medication, for various reasons, but if they're suggested to me, maybe I can just get on with it for 3 months... Not keen on the idea of tummy looking even more massive though - it's bad enough at the moment that I get offered a seat on the tube!!

Thanks again for replying - much appreciated.

LadyMaryQuiteContrary Fri 12-Apr-13 12:52:00

My stomach looks a little bloated at the moment, I can feel that my uterus is enlarged when I poke it though blush It's supposed to go back to normal after the course has finished so I shall have to see. I'm not a huge fan of medication but the alternatives don't look appealing either. They had to do something, the excessive bleeding was making me so anaemic that I needed a blood transfusion. I had 2 fibroids which were large and side by side so the equivalent of a 20 week pregnancy. They did go down as it was almost flat after 6 weeks on the medication. I'll let you know how things go. smile

It's worth looking into.

TheBeanAndTheBee Tue 16-Apr-13 12:55:56

Hi Lady Mary have an appointment this afternoon with my consultant so will let you know how I get on...

Thought I'd give this thread a gentle bump as well to see if anyone else is in the same situation as us or some experience of the embolisation procedure. Anyone out there?

LadyMaryQuiteContrary Tue 16-Apr-13 12:58:35

I hope it goes well. smile

Kenanddreary Tue 16-Apr-13 19:25:08

Hi Bean - have just noticed this and hopefully can provide some info because I had the embolisation procedure about two years ago.

It was a fairly straightforward procedure and appears to have worked!! Two years on I am pretty much symptom free. I had to stay in hospital overnight and there is a lot of preparation in the hour or two before the procedure takes place but after that I slept on and off for most of the day and night controlling my pain with my own morphine pump.

By the next day I didn't need any pain relief. I was advised to book two weeks off work (compare this to a hysterectomy) but in reality I was up and about within a few days.

Hope your appointment went well. Feel free to PM me if you need more specific information.

Good luck smile

TheBeanAndTheBee Thu 18-Apr-13 11:31:41

Thanks ken for this, much appreciated. Having gone to see my consultant I am now not sure what I want to do! Both yours and Lady Mary's opinions would be much appreciated...

I discussed embolisation with my consultant and although it's still an appealing option, I didn't really appreciate up until now that it would only cause the fibroid to reduce (best case scenario by 60% I was told) but it wouldn't completely disappear entirely....

I also had thought that I could treat embolisation as a first step, and then go to a myomectomy as a next stage if I was unhappy with the results. However the surgeon felt that at the moment that it would be really easy to remove them, but should I embolise or treat with Esmya first, it would change the texture of them and make them more difficult to remove surgically. Not impossible but more difficult.

We then discussed a myomectomy and he felt that I was a great candidate for that having looked at my scan, due to it being one (giant) fibroid and also its positioning. He did also admit that being a surgeon he'd always lean towards whipping them out! I asked about recovery time and he said although they generally say 6 weeks, in reality it's more like 2 weeks. I asked if it was like recovering from a section and he said yes, and having had 2 c-sections, I know that's completely doable. he'd go in through the same scar etc. However the thought of effectively another c-section and not getting a cuddly newborn at the end is a bit daunting.

SO - am now really in two minds.... I had gone in there, thinking embolisation is the way forward, but am now considering the surgery. Bottom line is that I would love to just get rid of the fibroid and be done with it, and i"m worried if I go for embolisation I'll end up having to have (trickier?) surgery anyway at a later date. It's also a good time for us to do it as a family now, my girls are both in nursery so they would be looked after full-time during the week and my DH could pick up the slack at either end of the day and at the weekend while I recover. My DH's job also covers us for private healthcare at the moment and he's thinking about leaving.

At the same time, i'm terrified of willingly going in for major surgery if that makes sense!!

My consultant has totally left it up to me, he's happy to refer me to the interventional radiologist if embolisation is the route I want to go.

What would you do? Any thoughts would be much appreciated...

Ken how much has yours shrunk by, do you know? How long did it take to shrink? Are you in London by any chance?

Thanks in advance ladies and apologies for the very long response...

LadyMaryQuiteContrary Thu 18-Apr-13 14:36:36

I'd try the Esmya before anything else. If you can reduce it without surgery then this is the best option as there will be no recovery time. They can grow back with embolisation and it basically cuts off the blood supply to them so can make you pretty ill (fever, black discharge etc). Did he mention doing the myoectomy as a laprorocopic procedure? It should be a little easier to recover from then an open. They may be able to do it as there's only one. If I had someone else to care for ds I'd have this. You need to think what's right for you and your family though.

TheBeanAndTheBee Thu 18-Apr-13 15:15:47

Thanks LadyM - we talked about the Esmya option and his concern was the same as with the embolisation in that it would make any myomectomy more difficult - something to do with changing their appearance... He did say that there are two different schools of thought with regards to using Esmya, some consultants recommend it and some don't. <helpful>

The fibroid is too big to come out laparoscipally (sp), size of babies head, so would have to come out same way as the babies did.... At least I already have a scar I guess.

Ach - really undecided!!!

LadyMaryQuiteContrary Thu 18-Apr-13 17:45:53

Mine were 6 cm and 7 cm, this was in Jan. They are side by side so looked like one mass. I've no idea what's happening now though, I'm due to have a MRI on Monday but don't have an appointment until May. My consultant did say that there was no evidence of regrowth after 6 months of finishing Esmya but the studies only followed up to 6 months so they have no data. Problem with surgeons is that they will recommend surgery first. I'm not sure if this is a nationwide problem or just something I've noticed. It's your body; have a think and see what works for you. There's pros and cons to everything but they do stop growing during the menopause so if you're around that age anyway it doesn't make sense to do anything drastic.

TheBeanAndTheBee Thu 18-Apr-13 20:21:59

Yes I hear what you're saying re: surgeons - he even mentioned that himself! I did genuinely feel no pressure either way though. I'm 40, so (hopefully) have a little way to go before the menopause. Mine is 12cm so similar in size to your two. Will you let me know what happens when you do get your MRI? I'd love to hear how successful the Esmya has been.

If anyone else on here has some experience of this, including a myomectomy then I would love to hear from them....

Kenanddreary Thu 18-Apr-13 20:34:58

Oh gosh Bean - lots of food for thought here. I really don't know what to advise you - you have to be guided by your consultant and how your fibroid is affecting you. Each case is different and some treatments are better for some than others.

In my case the choice was quite simple - either embolisation or full hysterectomy. I did toy very briefly with the idea of the latter but when I met and discussed everything with the consultant radiologist it became apparent that in my situation an embolisation would probably be very effective. Yes it does only shrink the fibroid(s) and they can come back but I felt that was a risk worth taking especially as I'm mid 40's and as Lady said they stop growing during menopause. The other option was far more drastic. I didn't have any nasty side-effects from the procedure (in fact I didn't have any side-effects at all) so can't say it was invasive or particularly difficult.

My fibroid was the equivalent of a 16 week pregnancy so pretty big. It was pressing on my bladder and quite uncomfortable. At the first scan 6 months after the procedure the consultant was delighted that it had shrunk quite drastically. It is still there but very small and causes me no problems at the moment. It starts to shrink very quickly and I felt the benefits very soon afterwards. Would recommend to anyone who has been advised to have this procedure. BUT - you must consider your own situation, current symptoms, options in isolation from anyone else.

I am in the Midlands but I believe my consultant also treats in London.

Let us know what you decide to do!

TheBeanAndTheBee Thu 18-Apr-13 21:02:34

Thank you Ken I can't tell you how much I am appreciating both of you giving me your opinions and sharing your experiences. Wow - ok embolisation or full hysterectomy...I can totally understand your choice in those circumstances....

Can I ask a slightly vain question - can you now still see the fibroid? Although of course I'd be delighted to get rid of my symptoms, I do really really hate looking pregnant when I'm not! The rest of me is quite slim so it just looks like I'm about to pop out another baby!!!

Kenanddreary Thu 18-Apr-13 21:22:31

Lol! I totally understand what you mean! No - my fibroid cannot be seen now. Although if I suddenly became a size 8 it might be a possibility grin.

Keep us posted! smile

LetsFaceTheMusicAndDance Tue 23-Apr-13 18:03:04

Hi op. Got your pm. I tried embolisation in1998 but had no benefit. I found it quitr painful for a day or so - like v bad period cramps. I went back to work a week later but was in discomfort. I had a baby after the procedure with an unassisted vaginal delivery.

I took esmya last summer with no benefit to the size of the fibroid. My periods have been horrific ever since whereas they were fine before if a little lengthy.

I sm planning a hysterectomy in October. Myomectomy would be a pointless op. I have a friend whose fibroid grew back after one so she then had a hysterectomy.

Usually I'd say try the least invasive option first and work up but it's not that simple in your case

During esmya my tummy got bigger then I had a flood of liquid as if my waters had broken - and it definitely wasn't urine. Luckily I was at home.
.

TheBeanAndTheBee Wed 24-Apr-13 13:21:44

Thanks LetsFace for responding, apologies for the stalking of fellow fibroid sufferers!!

When you say that a myomectomy would be a pointless op - do you mean for your particular situation or just because there is a possibility of them growing back??? I don't want any more children, but a hysterectomy just seems too drastic (for me). May I ask what's helped you decide to go down that route?

Also how long did your friend's fibroid take to grow back out of interest?

For my next step, I've decided I'm going to have a consultation with the radiologist about embolisation and then try to make a decision after that.....

Would love to hear from someone who's had a myomectomy if there's anyone out there!

LetsFaceTheMusicAndDance Wed 24-Apr-13 22:16:46

I am 48 so it wouldn't be too long till I would start the menopause naturally. If I keep my ovaries that should give me a few more years' hormones. Myomectomy is a trickier op than a hysterectomy so I don't see the point for me. My friend"s grew back within 5 years.I tthink you should research the regrowth rate. I have postponed my op till now to keep my own hormones. Also since the bugger hss refused to shrink despite best efforts the doctor thinks it won't reduce after menopause anyway.

TheBeanAndTheBee Thu 25-Apr-13 10:01:37

Thanks Let'sFace, yes will look into the regrowth rate. I'm 40, so have a few years to go pre-menopause (hopefully!)..... I guess I have to accept that whatever I do (except hysterectomy) there's the possibility that they will grow back....

Thanks again to you all for your kind advice. Will keep you posted!!

LadyMaryQuiteContrary Fri 03-May-13 17:50:03

Hi. Just coming back to give you some more info. The Esmya didn't work, the fibroids are the same size. sad I'm sure they did change but the MRI says no. I'm now on the list for the embilisation procedure. Pah!

TheBeanAndTheBee Fri 03-May-13 21:43:55

Hi ladymary thanks for updating me, but I'm so sorry to hear that the esmya has been unsuccessful sad

I had a meeting with the radiologist earlier this week and he didn't feel that embolisation was going to be a good option for me. He thought it would improve my bleeding but not all my bulk related symptoms. Mainly because of where it is and because it is one large fibroid rather than 2 or more smaller ones. He recommended the myomectomy. So I think I'm going to go for it, eek!

What's the next stage for you? Have you talked to a radiologist as yet?

LadyMaryQuiteContrary Sun 05-May-13 23:49:42

It's OK. I was so sure they were working, I could see them shrinking. He said there were 2 on stalks but these wouldn't be the ones causing the bleeding. I can't stay in hospital as there's no one to care for ds so my only option is to have them embolised until he's older. I'd opt for a myomectomy if there was just one, I have 2 at 6 cm and a few smaller ones (mm) though. The radiologist has put me on the list, he said it'll take a couple of months.

TheBeanAndTheBee Thu 16-May-13 15:07:22

Sorry it's taken me an age to reply. Been on a project with a Korean client and they literally NEVER sleep! Extraordinary.

Hope you're feeling a bit less disappointed now, and also hoping that the wait doesn't take too long. Let me know when you get your date through. I'm going back to see surgeon one more time next week just to run through the myomectomy now I've made that decision. The difficulty now is planning when to have it done, as am freelance will have to pay for childcare while I'm recovering and won't have any money coming in to pay for it iyswim. Am very fortunate that DH's work provides private healthcare cover for me so at least I get a degree of choice when booking it.

I'm now very excited about the prospect of getting it out. 3 people asked me yesterday if I was pregnant, not great for a freelancer!! sad

ladyMaryQuiteContrary Mon 03-Jun-13 15:25:11

Hi Bean,

I'm envious of people with that much energy. envy

I'm steering away from having anything done. I no longer look pregnant (well, nothing a few abdominal crunches wouldn't sort out) but I've no idea what's going on with them. How are things with you now?

Hi, I had an embolisation done last July, at St Thomas's, London. No problems with procedure, it was very painful, but not for more than a few days. I was off work for a week or so. Aftercare was not great.

My fibroids 25cm, it actually grew after the embolisation! I think that procedure works best for smaller fibroids.

Having a tota hysteectomy (keeping my ovaries) in 2 weeks! And after looking heavily pregnant for many years, I CANT WAIT!!! grin grin

ladyMaryQuiteContrary Mon 03-Jun-13 18:03:27

I had a message on my phone telling me they could fit me in on Monday for an embolisation. It's a bit quick. I'm not sure what to do. 25cm sounds very uncomfortable sad I have 2 at 6cm.

Oh ladymary! We are on all the same threads with our hideous lumps grin

From what the various consultants I saw said, I should think you would be a good candidate? Small (ish!) fibroids, not calcified I presume? I think they an grow back but thats not certain.

I can tell you anything you like about the procedure! It was actually quite intersting to watch once I was over the fear.

can grow back- but thats the same with any fibroid procedure

ladyMaryQuiteContrary Mon 03-Jun-13 18:14:13

grin wine?

I'm a little worried about them cutting off the blood supply to the rest of it. I'm tempted to postpone it so that I can see what the esyma has done. It seems more swollen then the 6cm they say though. They said I can be in and out in a day so won't have to stay overnight. I'm not sure if they have calcified, there was nothing to say this on the MRI report.

Oh yes please, am already on the [gin] grin!

I am suprised to hear they dont want you in overnight. At St Thomas's they kept you in to administer pain relief- I had a self-administering morphine drip and I needed it! Apparently the more pain the better (shows it has worked). I couldnt have gone home in my morphine haze...

I felt no ill effects from the cutting off of blood supply, but do bear in mind it can worsen any discharge you may have (I didnt know this). I have found that to be true- I have at least a week of clear discharge after every period- heavy enough to need maxi sanpro every day sad. And it didnt work. But it could be very different for you?

ladyMaryQuiteContrary Mon 03-Jun-13 18:26:41

I can't stay in, there's no one to look after ds. That's why they are doing it as a day case. I know about the discharge/temp etc, I only stopped taking the esmya 10 days ago though so I'm hoping it's done something. My stomach does feel flatter but it's higher up. I haven't had an AF yet and this was more of a problem than the fibroids.

Chin chin! grin

Heyyyy... you havent lived until you have stood on the street in a puddle of blood. Thats not any period, thats a super duper fibroid period grin.

I would look after your DS if you wre in London, really, one nights not a big ask, is he young? Sorry to hear no one will help you sad

Hope your Esmya worked. Fingers crossed eh.

ladyMaryQuiteContrary Mon 03-Jun-13 18:43:42

Oh, that fibroid period, the one that happened in the GP's surgery. Luckily for me my jeans kept it contained. My GP was worried enough to have me carted off to hospital (shame he wasn't worried enough to check my haemoglobin levels after I'd been discharged as I needed a blood transfusion. hmm) Ds is 14. There isn't anyone else. I'm going to call them and postpone it I think. It's too early and the Esmya won't have had any time to work yet.

Yes, have learned to go in and request blood tests from my GP, they say helpful things like 'oh you look alright' -hmm. Now I just ask for a test if I feel low. Took me a long time to get to that point- living with low iron is hard.

Have been anemic for a long time, transfusion in Jan, 3 bags. Blood pressure was down to 60/40 after a bad bleed and the doctor at A&E still wanted me to wait in the waiting room for 'up to an hour' as there were no beds. Got one once I fainted though!

If in doubt, dont. As my mum always said. I think thats a wise move if you are not sure.

ladyMaryQuiteContrary Mon 03-Jun-13 18:59:53

I'd like to see if things will settle down first.

My GP said I looked OK but did a blood test to shut me up. It was 7.2 but I wasn't contacted and only found out when I had a gynae appointment a month later. By this point it was 6.1 and she was shocked that I was still functioning, I hadn't noticed the gradual decline, had it have been a sudden bleed I'd have noticed apparently. It's 11.4 now. I think they are all bonkers. grin

Dramaqueen1 Sat 19-Oct-13 09:32:25

Hi
I have a fibroid the size of a 28 week pregnancy. I'm 51. I have to have a hysterectomy taking everything except my cervix as the fibroid is pressing on my ureter and causing my kidney to dilate. I've not had a menopause yet but the fibroid is getting dangerous. I'll be taking Esmya for three months to shrink the fibroid so that I can have a bikini like incision rather than a midline which is more painful in recovery and more obvious as a scar.

Esmya will work for 6 months after the initial three month course but then the fibroid will start to regrow. It is only a per op medication. Not a miracle cure. Also my fibroid is too large to shrink after menopause and they can still keep growing on some women as trace amounts of estrogen are found in foods etc.

Ps I've been told that Esmya prepares the tissue better for surgery and if the fibroid smaller less blood loss. With an embolisation there is more danger of damage to urinary Tract and bladder. All surgery has its dangers.

Best of luck

Dramaqueen1 Sat 19-Oct-13 09:38:37

Ps taking ovaries as I'm probably near menopause and if you have hysterectomy the ovaries only work for 5 years or so after because uterus gone.

Saffronflowers Sat 19-Oct-13 13:31:29

Hi,
I'm new to this. So good to find a conversation about this. I have been struggling for a year, really anaemic and five fibroids between 12 to 15cm each. A cyst of 10cm was in an ovary but my last scan showed it had disappeared. I've been through the mill a bit with another huge op for something else so having more surgery wasn't advised. Finally I'm on a drugs trial for Esmya at the university hospital as here in Nottingham doctors won't prescribe it. Or you can pay privately.
Anyway week six and I'm happy having missed a period and reduced pain but I'm having lots of hot flashes, I'm really bad tempered or tearful and my breasts which are ff anyway are just so sore and heavy which is like being premenstrual all the time. I'm trying to persevere but I'm finding it a bit tough. Does this sound familiar to anyone else?

(The good news is that I think my tummy doesn't look quite as pregnant but it's still very much there !!!)

Aliza990 Fri 15-Nov-13 23:04:44

Hi ladies. So pleased to have found this site. Week 2 of Esmya after being diagnosed with at least 2 (intramural) fibroids 8x6cm or 20 wks size. Hideous periods, anaemic and expanding tummy! Declined embolisation after long discussion with expert gyne who said shrinkage was minimal and could take a year. Going to have a laparoscopic hysterectomy late jan after being on Esmya for 12 weeks. Interested to hear from anyone who's been down this road or could offer advice on recovery time from the op.
Nice to know not alone. :-)

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