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From BoffinMumsFibroid: Come here all you fellow fibroids and bring me your success stories

281 replies

BoffinMum · 27/08/2015 20:38

I am a lovely fibroid the size of an orange and I have successfully infiltrated BoffinMum's body causing all sorts of mischief

Roll up, roll up and tell us what you are up to and how big you have grown.

By the way, my role model is the alien that burst out of Sigourney Weaver's body in Alien. Except I do not plan on bursting out!

OP posts:
LunaLoveg00d · 09/11/2016 12:36

I had to make the same decision, Trouble. Do a lot of reading. I'm not going to patronise you by saying there is a lot of crap information out there as you'll know that already but I found the NHS clinical pathways pages and pdfs of leaflets put out from hospitals helpful too. The Hysterectomy Association pages have lots about hysterectomy, and the alternatives.

In the end I opted for hysterectomy - mainly because the fibroid has pushed the Mirena out of place so I'd have to have a procedure to remove the Mirena under general anaesthetic in addition to the embolisation. I was also told that in my case I could expect a 50% reduction in symptoms at best, which still wasn't great to be honest.

Good luck with whatever you decide.

Any news from Boffin? Her last post was quite concerning.

troubleatmill2011 · 09/11/2016 13:02

Thanks Luna, it's a really tough call and j keep swaying between both options. I guess the putting me to sleep and the 6 weeks of work is what is putting me off the most. I've never had an op in my life, scares the life out of me! Have you had your hysterectomy yet or have a date? No I I've not seen anything from her, hope she's ok!

LunaLoveg00d · 09/11/2016 13:39

I've had general anaesthetic before and that part doesn't scare me at all. It's more the recovery which bothers me, 4 weeks not driving and not being able to lift anything. The date is set for 22nd Nov though, so no going back now!

troubleatmill2011 · 09/11/2016 17:19

Wow, I find it hard to think of anything else other than this. On my mind constantly.Confused I just don't know how I'll ever make my mind up!

VikingMuchToAllOurLiking · 09/11/2016 18:36

I had both. The embolism didn't work for me, and I then had to wait for the hysterectomy. So for me I wish I'd just had the hysterectomy straight off! Not much help, sorry.

Hysterectomy was really ok, yes you need to take time to recover, but I was incapacitated at least a week or two a month by heavy periods, and really anaemic, and so it was well worth it imho.

LunaLoveg00d · 09/11/2016 18:46

When do you have to make your decision by, Trouble?

troubleatmill2011 · 09/11/2016 19:12

By next Tuesday at 6pm. My symptoms have been heavy, long bleeding and discomfort / cramping but compared to others i think I've got off quite lightly. This months was light though and less painful which has probably not helped me doubt what treatment I want. I just don't know what to do for the best. I've read UFE has a high success rate and think it'd be worth a punt but then long term benefits of a hysterectomy are quite appealing

BoffinMum · 09/11/2016 23:44

Hello, sorry I disappeared off. GP has put up my dosage and I was able to get into work today, but I have to go back to the surgery on Friday to get checked over.

I have four kids, three still at home. Eldest DS could help a bit. Have someone to do school run but likely to be marooned at home a lot if I can't drive as I have mobility problems anyway, and nobody around in the day who can drive. So house arrest, basically. Dh working flat out building a business so unlikely to be around. Not a good situation but I will probably survive.

OP posts:
StairsInTheNight · 10/11/2016 10:05

That sounds very difficult. But having help with school run is good at least. Sorry you find yourself in this situation, I do hope your GP can help you find the best solution. Keep us posted?

BoffinMum · 11/11/2016 17:01

GP says hysterectomy is looking more and more likely for me at the moment.

OP posts:
LunaLoveg00d · 11/11/2016 17:07

Oh dear. That's not what you wanted to hear. It is a fairly large operation and unless you can have it keyhole, it's 3 nights in hospital. Then 4 weeks not driving and no heavy lifting for 3 months.

However - looking on the bright side, with hysterectomy there are no ifs, buts and maybes. It WILL solve your problem and will evict evil fibroids forever.

If you want to message me please feel free to do so - my hysterectomy is scheduled for 22nd Nov and I'm starting to get organised with everything I'm going to need. I've found the Hysterectomy Association website very good for impartial, non-American info and advice.

LunaLoveg00d · 16/11/2016 11:37

Had my pre-op appointment this morning before going in next week for the fibroid removal. Lots of swabs, bloods and urine tests. Made me laugh that they want to do a pregnancy test before the op. No baby, just a baby-sized fibroid.

Nurse was lovely and gave me lots of good advice about what to expect - surgery on Tuesday afternoon, they advise the first 24 hours in bed with a catheter, she said they would hope to get me up and about by lunchtime on Wednesday. Can have a shower as soon as I'm ready as they will use waterproof dressings. I will see a physio who will help with things like getting up and down stairs. They have promised me lots of pain relief (I will be holding them to that). I won't need to see a nurse after I leave hospital for dressings change as the nurse seems to think I can do that myself... although i may see a practice nurse for reassurance. Have been given a shopping list - big knickers, nightdresses, maternity pads and slippers.

All in all, fairly positive and now we just have to hope the swabs they took for MRSA are negative!!

troubleatmill2011 · 16/11/2016 19:36

Hi Luna, sounds all very organised :-) - how you feeling about it all now it's starting to happen? I went back to my gynaecologist yesterday and told them I want a UFE so just waiting for an appointment for a MRI to make sure I'm a candidate for the procedure. Fingers crossed!

LunaLoveg00d · 16/11/2016 19:47

To be honest, I just want it done. Sooner it gets done, sooner in can start the recovery. Kids are in for a shock though when Mum can't do much...

troubleatmill2011 · 16/11/2016 19:57

Yes I bet they will! Have you got a good support network around you to help you through it?

LyrasOmlette · 16/11/2016 20:41

Will just chime in to say that I had a subtotal hysterectomy for my 10-12cm fibroids three weeks ago and am luckily recovering really well.

The procedure went smoothly and I was out of bed in less than 24 hours. Only stayed in hospital 2 nights. Took it very easy the first few days but was soon able to do small things around the house (fold laundry, pack kids' lunch boxes, light cooking, etc). I try to get out for a walk every or two.

I had 2 c-sections and the surgeon was able to go through my existing scar. It's healing nicely but my tummy is still a bit swollen and tender. My main symptom from the fibroids was constant pressure on my bladder. It's a little hard to tell yet how much relief the surgery has provided bc of the swelling and internal healing, but I think there is definite improvement.

The hardest part was being unable to keep anything down while the GA wore off but by the morning after the op I was able to eat some cornflakes and then some rice for lunch. Was back to normal diet pretty quickly.

Having had the c-sections, I was very familiar with what I'd be experiencing (although I'd never been under GA before). I think that familiarity made the whole process easier. With my c-sections I lost a lot of blood (nearly 2L) and needed transfusions, plus had newborns needing me. This time around was much easier in comparison.

I'm very fortunate to have help with the school runs, and to be able to take it easy for the next few weeks.

Everyone has a different experience, of course, but I'm happy to report that mine has been really positive. Hope that helps and good luck.

LunaLoveg00d · 22/11/2016 09:26

So it's D-Day for the eviction of the fibroid and its evil spawn. Bloody starving as i've been nil by mouth since 8am and I haven't had any breakfast. Will update you all and let you know how it went.

Hope everyone else is doing OK.

IamNotDarling · 22/11/2016 09:42

Good luck Luna adiós fibroid! Look forward to hearing good news on your recovery.

troubleatmill2011 · 22/11/2016 20:58

Good luck Luna, hope all goes well!!! Keep
us updated x

BoffinMum · 22/11/2016 21:00

Good luck Luna! Let us know how you get on!

I have just been put onto Esmya and I am hoping this shrinks The Brian. It is looking very hopeful that I might well be able to avoid a hysterectomy after all. Very pleased about that.

OP posts:
LunaLoveg00d · 23/11/2016 12:14

FIBROID IS NO MORE!!

op went well yesterday, bit of nausea but that was the anaesthetic not the operation itself. I'm up and about, catheter is out, had a shower. And the nurses are lovely and giving me lots of morphine.

Nearlyhadenough · 23/11/2016 17:26

Sounds great Luna! Take care and get well soon.

I am seeing a consultant on Monday to get suggestions for my treatment. GP wanted to fit a mirena but apparently due to the way my fibroids are positioned there is no room....

I would be very happy to have a hysterectomy.

troubleatmill2011 · 23/11/2016 20:58

Ah Luna sounds bliss! You must be so relieved, get well soon :)

Stefoscope · 24/11/2016 22:15

Can I ask how long it took for you ladies to be diagnosed with fibroids? I'm booked in next week to have a smear, swabs and ultrasound. I've bleeding more often and heavily in between periods for a while now, but the past month has been horrendous for twinges/cramps as well. The nurse mentioned fibroids as a possible cause. Can they be detected by an ultrasound?

troubleatmill2011 · 24/11/2016 22:51

Hi, yes mine was detected at ultrasound straight away after my GP suspected, that was about 4/5 weeks ago now. Mine is 8 cm

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