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Big fibroid, big decision - your experiences please!

(16 Posts)
Yogibear72 Tue 03-Sep-13 20:49:12

Thanks for sharing Emanon and LadyMary

LadyMaryQuiteContrary Wed 28-Aug-13 22:42:53

There is a new medication that you can take which shrinks them, it's called Esmya and is very new. They have conducted research up to 6 months after taking the drug and there's no sign of regrowth. The side effects are not great as they are menopausal like (night sweats, mood swings, thickening of the endometrium) but it's a three month course and the symptoms stop when the course is over. It can also reduce bleeding but it doesn't always work.

There's also something called embolisation, they basically block off the blood supply to the fibroid and it shrivels up. It's usually an overnight stay but can be done as a day case.

There's also a myomectomy where they remove the fibroids surgically but this has the same risks and recovery as a hysterectomy and they can grow back.

I'm not saying a hysterectomy is a bad thing but you should be aware of your options and do what's right for you. The first gynaecologist I saw said a hysterectomy was all he could do, despite the fact that I was 34. It was only when I asked about the alternatives that he mentioned the medication. My sister was TTC and she was also advised to have a hysterectomy. I've taken the medication, the 2 largest have shrunk by 2 cm (they were 8 and now they are 6) and I now only have 2 small ones instead of 'numerous'. My periods have gone from lasting 18 days (12 days heavy bleeding) to 6 (2 days heavy). I am thinking about having them embolised as I look pregnant but some of this is because I need to tone my stomach.

Yogibear72 Wed 28-Aug-13 22:25:17

What are the other options?

emanon Wed 28-Aug-13 22:15:19

I had the fibroid prior to having my two children. I had a myomectomy to have it removed, had two successful pregnancies and then a surprise pregnancy which resulted in a miscarriage (due to my advancing years) a couple of years ago which caused the fibroid to regrow. I don't really understand the worry about having a hysterectomy. If you know you don't want anymore children, it just makes sense and the operation is very straightforward as was the recovery. 3 weeks after I had the op, I felt completely back to my normal self and I did I mention no more periods!! I have also suffered no other side effects ie. weight gain, hormonal changes etc :-)

LadyMaryQuiteContrary Wed 28-Aug-13 13:19:15

Hi, Yogi. My sister (and I) have fibroids. Hers grew massively during her pregnancy as they are hormone related.

Don't assume a hysterectomy is your only option as there's more choices available now. smile

Yogibear72 Wed 28-Aug-13 13:16:10

Thanks for your post, Emanon. You are a very brave lady to go for the hysterectomy as others would hesitate over that decision. It sounds like it was the right decision and you made the best choice. This way you know they will never come back. Was there any history of fibroid issues in your family?
Im 13 weeks pregnant right now with my first and didn't know about the fibriods until I was 6 weeks pregnant. Its only since the pregnancy that the pedunculated one has grown monstrous. I have another 3 other fibroids inside my uterus and they are also growing. I look about 5 months pregnant already! There's no treatment options available whilst pregnant but it's already on my mind to get something done as soon as the baby is born. This will be my first and only baby as the fibriods have put post to that.

emanon Mon 26-Aug-13 15:24:38

I had your exact same problem, one huge fibroid that I could feel but actually no other symptoms. I had a hysterectomy last year at the age of 45. They took my cervix, but no my ovaries, so no early menopause etc. I can safely say it was the best thing I ever did. I was not going to have anymore children so it made sense and now I don't have any periods, which I can tell you is the best thing ever! If you would like to know anymore, please let me know :-)

Yogibear72 Sun 25-Aug-13 01:01:51

It's been a while since your original post.. Grinningbee, Just wondering how you got on? Pedunculated fibroids seem to be uncommon, but I have one as well. Similar size and like yours it protrudes and moves around. I'm also 41. It's really uncomfortable, but treatment options don't look nice either.

debka Fri 18-May-12 20:38:13

Hello bee (deserter from the DoD thread).

I have no experience of this at all, but I think you should stop talking to your H about this and make the decision that is best for YOU. Have the drs made any recommendations?

LadySybilDeChocolate Fri 18-May-12 20:38:04

The partial removal isn't the quickest recovery, it's the same as a hysterectomy. There's also the chance of it bleeding during surgery, which will require a hysterectomy if they can't stop it.

I'm going to be no help at all, but I also have a whopper of a fibroid which is a similar size to yours.

Mine is intramural, and apparently my only choice is a full hysterectomy which I really don't want. I have horribly heavy and painful periods and can't get pg because of it. I don't have DC.

I would have to do the right thing for me, I'd you want a partial, then do it. If not, have just the lump out.

You will have to live with the consequences - and the impact on your body. And tbh really honest, it doesn't sound as though your DH is thinking of you at all.

LadySybilDeChocolate Fri 18-May-12 20:34:06

Hi smile I have some also. There is a new medication that you can take which shrinks them. The side effects are not great though (I'm trying to think what it's called). There's also something called embolisation, they basically block off the blood supply to the fibroid and it shrivels up. It's done as a day case.

Oooh crumbs - well look this isn't really about the fibroid is it? It's about your relationship with H. Do you think he meant HE wouldn't see you in a certain way if you had your womb removed?

I think YOU should choose the option which is safest for you and with the quickest recovery. I suspect thats the partial op.

Would H go to counselling with you to explore this situation and your relationship in general?

grinningbee Fri 18-May-12 20:24:45

Anyone at all?

grinningbee Fri 18-May-12 15:54:12

bump

grinningbee Fri 18-May-12 14:42:54

Hi all,

I have a large fibroid. It's the size of a grapefruit, and when I lay flat it's very visible. It's also pedunculated, and can merrily waft from one side of my body to the other. It's playing havoc with my bladder too, and painful a lot of the time. I do have heavy and painful periods, but if I didn't have the lump I could live with them.

So. I've seen a consultant once already and been given the following choices:

Do nothing
Just the fibroid out
Partial hysterectomy
Full hysterectomy

The first and last choices are not an option. I can't leave it as it is. I don't want the full monty because I'm only 41 and don't want to go straight into the menopause. I know I could end up doing that anyway with the partial one, but I'd be happy to take that chance.

I'd already talked to H about it, and had settled on the partial. We have a 3 year old and a very almost 18 month old. For a few reasons I don't want any more dc. Yes I shall feel a bit sad, but I'm sure that's the case whenever you decide that part of life is over.

Last night H said he thinks I should only have the fibroid out because "I think that you'll be sad and feel that part of you is missing". He wouldn't hear of anything else.Then he promptly fell asleep on the sofa.

TBH we're not getting along that well, but I can't help thinking he wants me to get pg again. He's refused to get condoms (says he can't perform in them), so I took it upon myself to see the Dr today and got a prescription for the pill. I should mention however that we haven't had relations in 7 months now. I did say to him that I was going to get it. I just can't risk getting pg before the op.

Anyway! I see the consultant again on June 12th and have to have an answer. The op would be abdominal due to the size of fibroid. Have any of you had to make this choice? Which did you go for and how was it afterwards? If I was on my own with the dc, how difficult would it be?

Should I just go for what I think, or should H get a say?

Sorry for the epic post. Any comments gratefully received smile

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