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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.

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. :-)

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

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 !!!)

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.

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

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

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

KvassInTheNight Mon 03-Jun-13 18:52:55

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 18:43:42

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.

KvassInTheNight Mon 03-Jun-13 18:38:30

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 18:26:41

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

KvassInTheNight Mon 03-Jun-13 18:21:04

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 18:14:13

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.

KvassInTheNight Mon 03-Jun-13 18:14:08

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

KvassInTheNight Mon 03-Jun-13 18:10:49

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.

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.

KvassInTheNight Mon 03-Jun-13 17:15:22

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 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?

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 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 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 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 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!!

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 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 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.

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

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