fibroid treatment & hysterectomy experiences, advice please!

[starsky73]

I am 41 with family complete and have one large fibroid (8cm baseball size) pressing on my bladder oh joy! plus one smaller one too, so I have been booked in for a sub total hysterectomy (leaving cervix & ovaries intact) in apporx 8 weeks time and have been put on Esmya to shrink it before the op. However I am now wobbling about the whole thing and wondering if I really do need the operation. My question is if the esyma shrinks them down do i need surgery? some studies seem to shown they stay small after esyma. Also if they have shrunk then maybe embolisation is a better option? Has anyone had esyma & then had embolisation? I know embolisation works best with smallish fibroids so wondering about the drug/embolisation combo.......its not one they seem to offer but could save me the op possibly? I am also keen to hear about any experiences of a subtotal hysterectomy, part of me would also like to have the whole thing sorted in one go, but very confused about what is best to do, and it does seem surgeons always keen to go for the surgical option.

I tried a course of Esmya but it didn't work, sometimes it doesn't. I have 2 which are 8 cm each and a few small ones. I'm having a myomectomy in August. My sister has them too, she had hers embolised but she has a lot and they are massive so it only worked for a little while and now they are growing again. She wasn't given Esmya, it may have worked for her, who knows.

My mother had a hysterectomy (for heavy periods) at 37, my age. Ever since then she's had hormone imbalances, depression, osteoperosis, heart disease, diabetes, prolapses (lots of them), urinary problems, bowel problems. A hysterectomy was the standard treatment back then. Whether the hysterectomy contributed to her current health issues is unknown, but there was an article in one of the medical journals saying women under 50 who've undergone a hysterectomy are at "significant risk" of developing coronary heart disease. I've read other studies which tell about the massive incidences of prolapses, depression, low libido and mood swings. Both my sister and I were instantly offered hysterectomies when we went to see the gynae. My sister was trying to have a baby at the time and I first went when I was 35. It was only when we asked about the alternatives that we were told.

Do you know where your fibroids are? If they are growing on the outside, like a mushroom, then embolisation may not be wise as they could break off and cause infection. I'd give the esmya a chance to work though, then make a decision afterwards. If you do decide that you don't want a hysterectomy then tell them that you're planning on having another baby and they won't pressure you. They do shrink and stay small once you've hit the menopause anyway so you have to work out for yourself whether a hysterectomy is the best route for you. They do change a lot of women's lives for the better so they can be great, you have to think what's right for you.

I had a total abdominal hysterectomy, apart from one ovary, almost 3 years ago, due to fibroids, and it's the best thing I've ever done, no regrets at all, I was 47. If I were you I'd go for it and get it all sorted once and for all, good luck!

Thanks for your thoughts both.....ummm it's tricky as you say costacoffee nice to have it all sorted in one go but also feel its possibly a bit drastic as a first port of call. Ladysybil I believe if they leave your ovaries then you are protected from the possible negative coronary effects etc. as it is the hormones that protect you but i take your point re: other possible negative effects, another protecting factor re: prolapse & libido is retaining your cervix which is also left in a subtotal hysterectomy.
I wonder if I should see if the esmya works and then go from there.... it does seem strange they can't check your blood before putting you on esmya to see if your fibroids are progesterone sensitive or oestrogen sensitive. The nhs could save some money as Esmya is expensive i believe, and only works if you fibroids growth progesterone fed.
Its really useful to hear other women's experiences on this thanks a lot

The left my mum's ovaries, she still went through the menopause, has coronary issues etc.

There are ways to balance out your hormones by changing your diet, I think, increasing soya, beans, fish, veg and fruit, getting rid of wheat, alcohol and sugar. I tried to research it on the web but it's a bit confusing to be honest and there's a lot of crap in t'web.

My GP stuck me on the mini pill, which is progesterone only and my stomach is absolutely flatter when I take them. They reduce the bleeding by 95% which was the main reason why they were prescribed but I'm sure they are also having an effect on the fibroids. I do agree that a hysterectomy is drastic, there are other options. Ask them about embolisation. They should do an MRI first which will mean that you'll find out where they are. As I posted earlier, an embolisation isn't recommended for ones growing on the outside (like mushrooms) but it depends on how wide the 'stalk' is. It may be easier for any ones like this to be surgically removed (myomectomy) but leaving the uterus. I think they recommend hysterectomies because it saves them the bother of dealing with them again further on down the line. I don't think they would so readily chop off a blokes penis because there was a mole on it though.

No libido or prolapse issues here I am starting with hot flushes and other menopausal symptoms but it's not horrendous. I really don't see a downside at all, and as the bits are totally surplus to requirements (and not only that, but a PITA too) it's not at all like chopping off a penis

But just because you have no effects it doesn't mean that other women don't or won't have any also, just as I'm not saying that every woman who undergoes a hysterectomy has a life time of issues, just that these issues can happen. It's better to be make an informed decision about your body IMO and not rush into something which may not be the best thing for you 5 or 10 years down the line. I'm pleased all is OK for you though, Costa

Yes I agree lady S it's true most gynaecologists are still men and they do seem to like to tidy up women's messy repro system with a nice neat bit of surgery don't they! I have my surgery slot booked in 8 weeks time but plan to speak with the embolisation radiologist to talk it through, my fibroid is intramural (not mushroom like) I was worried about have embolisation with a large fibroid and the risk of infection as it breaks down which could lead to hysterectomy surgery anyway, but thought if esmya works maybe embolisation is possible after all, although it only has 8 weeks to work.
If only one had crystal ball to see what route is best to take!
My fibroid has been growing over the last 5 yrs roughly doubling in size each yr, and i have tried some alternatives to no avail although I do think with early intervention they can be very helpful. It is tricky though as some say they are oestrogen fed and others its progesterone you need to block like the esyma drug does, anyhow with my fibroid family history and the big one I have its full on medical attention thats needed its just which option ahhhhh!!!???

I really don't think they have done enough research into the effects on a woman who's had a hysterectomy. There's research on prolapses, coronary heart disease but I do wonder is there's anything else. I don't believe that a uterus is redundant once a woman stops having children, they must regulate hormones in some way or it does something else too. Your body's a system, a very well regulated system which can heal itself (and destroy itself), it can regulate blood sugar, regenerate itself and create life. It's pretty amazing really.

If you want to go down the embolisation route you need an appointment with an interventional radiologist. Your GP can refer you. There's a gent called Martin Powell in Nottingham's QMC who does this procedure if you're anywhere near. Fibroids do grow rapidly during the peri-menopausal time because of the rush of hormones, they also grow rapidly during pregnancy. The embolisation can take a few hours and they do keep patients in overnight. My sister has had watery discharge since having this done which she's been told is normal, just so you're aware. I think I'd go from the least invasive way of sorting this and keep working through them. They can use a depot type injection instead of the Esmya so there is more than one type of medication.

I think it's important to take a balanced view and not be all 'doom and gloom' about it, I know lots of women who are post-hysterectomy, most I didn't know about until they told me when I was having/had had surgery, and without exception they all feel it's the best thing they've done. I have more energy than before and no side effects whatsoever, don't discount it out of hand

Of course, it can be fab It's a very difficult decision though so it's best to know all of the facts. I am biased, sorry. My mother was like the woman out of the exorcist after hers, so I've not seen the positive stories.

There's a lot of women's stories on a site called hystersisters www.hystersisters.com I found this really useful and it should have a more balanced view

Yes I'm aware of hystersisters

It wasn't a difficult decision for me, just a huge relief when the gynaecologist said I needed a hysterectomy - I was in theatre within 36 hours

Thanks again for your thoughts on this ladies really appreciate it.... it is a big topic for women and the hard thing is that different things work for different people.... its just sure is hard to choose what is right for oneself! I thought the other medication option was a tougher call, puts you straight into menopause bam just like that and that the fibroids come straight back afterwards if not removed? Whereas the esyma seems to keep them small or gone if it works at all that is!
I should be able to speak to the embolisation radiologist guy in the gyne dept where i am booked for surgery so can get his opinion too.
Whatever I decide all this talk and debate will certainly help me iron out the kinks and find the right path for me so thanks sisters!!!