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Uterine fibroids

(33 Posts)
Theshriekingharpy Fri 01-Feb-13 09:21:24

Message withdrawn at poster's request.

MolotovCocktail Fri 01-Feb-13 11:05:09

Hiya, no personal experience here, but my DM ha uterine fibroids which cause similar symptoms to what you've described. She was 53yo at the time (7 years ago), not going to have more children so she chose the hysterectomy.

To be perfectly honest, my DM would have preferred not to jar the hysterectomy due to the instant menopause she went through and it's symptoms: i.e. vaginal dryness/discomfort, weigh gain, hot flushes, water retention. These symptoms are due largely to hormones and having (or going without) HRT at differig times.

My DM can be a drama queen but I believe her when she says she'd rather have kept her ovaries in order to maintain natural hormone levels. A hysterectomy is drastic, it will change your life in many ways so think about your symptoms and what you're prepared to trade.

I hope that this helps.

LadyMaryQuiteContrary Fri 01-Feb-13 11:22:58

Hi. I have 2 or three which are 6cm/6cm and 8cm (one hospital found 2, one hospital found 3 8 months later) I also get severe bleeding and needed a blood transfusion last week because of this.

You don't need a hysterectomy as there are other options. There is a new medication that women take once a day called Esmya. It works by shrinking the fibroid and reduces bleeding but there are side effects (hormonal mainly, I've been taking it since Monday and the short temperednes has gone, I've had no night sweats or anything else other than sore legs.). They only prescribe it for three months and their studies have shown no regrowth after 6 months and reduces bleeding.

There's also embolisation where they block off the blood supply to the fibroid, this also has side effects, as well as a myoectomy (removal of the fibroid surgically) or a hysterectomy as a final resort. All surgery has risks and the recovery is the same as a c section. They are supposed to prescribe Esmya before patients have any other procedures so you may find that you don't want anything else done after the three month course. You should get your haemaglobin levels checked, mine were 6.8 (normal is around 14) and I didn't feel ill at all. confused

Theshriekingharpy Fri 01-Feb-13 12:13:51

Message withdrawn at poster's request.

LadyMaryQuiteContrary Fri 01-Feb-13 12:23:45

I didn't feel ill at all and had been on a business trip a couple of days before I was called in. confused There's another medication but it's monthly injections which has more side effects and I can't remember what it's called. They will only prescribe this for a maximum of 6 months as it can cause issues with bone density. Esmya has been authorised by the EU but will be expensive if you have to pay for it. sad

kalidanger Fri 01-Feb-13 12:33:44

Hi. Ooooh I can talk about my fibroid allll day grin

I had a 7cm one too (size of a tennis ball, I believe) and had it removed via myomectomy and I'd thoroughly recommend the experience, as weird as that sounds.

Two years ago, I was 36. The timeline was basically as follows;
Started bleeding heavily but my periods stayed regular
Put up with it for 6-8 months
Went to GP
Sent for transvaginal scan and they confirmed fibroid
Booked for exploratory key-hole day op
In the meantime I already had a coil (which fell out shock I think it 'rode' a massive clot to freedom), had contraceptive implants, B12 injections, lots of iron tabs. The result of being on so many hormones made me have menopausal symptoms and those I would not recommend. Hot flushes, hair went weird, tired and rotten and slightly mad - I got fired from a temp job (at one of the world's most respected non-gov org -- dream temp job sad ) for being forgetful and strange. Also, the fibroid was pressing on my bladder and growing and I'd started to really feel it was there. ALso took two types of drugs to help reduce bleeding and for the life of me I can't remember what they are called. Didn't work very well but, uh, psychologically helpful grin This period was, obviously, the worst bit.
Went for an exploratory key-hole day op - not that bad at all. It's to measure and locate the fibroid very precisely so they know exactly what they are doing for the myomectomy.
A few months (? can't remember) later I had the myomectomy.
Two weeks off work recovering and everything is FINE now.

I was 'only' 36 (and childfree) so option of hystorectomy was dismissed (by me) and not pushed by them. The consultant did say "If you're thinking of having children think fast" in the time between initial consultation and exploratory op. BUt I wasn't so I didn't.

Ask me anything! I wasn't offered Esmya (might be VERY new, I might be in the wrong borough) but the implant etc was apparently designed to stop it growing/reduce bleeding.

kalidanger Fri 01-Feb-13 12:36:27

I've no desire to go through the menopause and all its associated symptoms at 34... if it can be avoided.

I believe the drugs/hormones cause menopausal symptoms, not the actual menipause. My symptoms went away afterwards. But they were really not great. Had a very young (younger than me obvs) female GP who breezily said "Oh yes, this causes menopausal symptoms!" and I was at lowest hormonal bloody ebb and I burst into tears and kept crying while she implanted me (in the belly - close to 'ground zero'). She dropped stuff, uhm'd and ahh'd, was nervous as fuck and didn't say ANYTHING to reassure me. It was shit but... pfft.

LadyMaryQuiteContrary Fri 01-Feb-13 12:39:15

Esmya is very new, I had an appointment last year (April) and the consultant mentioned it then but it wasn't available on the NHS then. A private prescription would have been £450 per month for 3 months! shock It doesn't cost the NHS this though. I can't have surgery, I'm a single mother and there's no one to care for ds whilst I'm in hospital or whilst I recover. I'm doing all I can to avoid it.

kalidanger Fri 01-Feb-13 12:45:35

That's a shame LadyMarysad I feel like mine was 'whipped out' and I am free to get on with my life, without trying to manage on drugs etc. Sorry, I'm not being helpful sad I did go back to work after 1 week but it wasn't fantastic - I could feel 'pulling' inside but it wasn't debilitating for me (childfree) but I can see how it would be if one is on the go 24/7.

You've obvs considered asking DM/DSis/BF to stop up? thanks

kalidanger Fri 01-Feb-13 12:45:49

Step up*

LadyMaryQuiteContrary Fri 01-Feb-13 12:53:38

I can ignore mine but it's the bleeding which causes the most problems. The consultant has said that the medication should stop this. I do look about three months pregnant though as two of them are side by side. doesn't mean the sods on the bus will give me a seat though My mother's not long had a hip replacement and my sister cares for her and has a child with aspergers. Ds's father is very shit (won't even pay maintenance so I can buy ds some boots to help him walk). I could stay in for one night if he stays with my friend but three nights are out of the question. Then there's the recovery. sad

kalidanger Fri 01-Feb-13 12:59:11

I was only in for one night but I guess your doc knows what s/he's talking about.

Respite care? Is that still available?

kalidanger Fri 01-Feb-13 13:00:58

I know about the bleeding sad One time I sat on a bin bag as I could not face the whole wash/cork/pad performance of what should have been a lazy Sunday morning blush

LadyMaryQuiteContrary Fri 01-Feb-13 13:08:24

I'm not sure. I'd still have to get ds to school on the bus though and the other passengers don't like to give up their seats! bastards. The cooking/shopping I can sort though. My GP sent me to A&E last time. The nurse there said to use an incontinence pad rather then a towel as they hold more. sad

kalidanger Fri 01-Feb-13 13:18:23

Here's an NHS link about respite care

Good luck thanks

LadyMaryQuiteContrary Fri 01-Feb-13 13:18:55


Theshriekingharpy Fri 01-Feb-13 13:27:46

Message withdrawn at poster's request.

kalidanger Fri 01-Feb-13 13:37:47

Harpy One night! And that night the Eurovision was on! I lay there and it was all bright colourful lights and strange sounds to look at grin Couldn't have chosen better recovery programming! I'm in London, was fortunate that the PCT used a private hospital for their gynae procedures.

My DM took me back to mine the next day and I spent a week on the sofa, fit only to change Pixar DVDs but then I realised that perhaps Tramadol was a bit strong for the small amount of pain, so cut them out and was functional again. But as I say I shouldn't really have gone back to work on week 2 and lasted a day.

Yes, lapaoscopic for both ops. Four keyholes, with one through the naval to mimimise scarring. <liftsuptop> Now I have three ghosts of purple marks the size of half-pees on my expanse of fat white belly. All that's left after approx. two years. I was never vain (iyswim) so not bothered.

As for the drugs..., there was one with a two-word name that is meant to lessen bleeding... My memory blush

LadyMaryQuiteContrary Fri 01-Feb-13 14:12:58

Tranexamic acid or mefanamic acid?

kalidanger Fri 01-Feb-13 14:24:43

YES! LadyMary - thank you grin

kalidanger Fri 01-Feb-13 14:25:10

Both of them!

LadyMaryQuiteContrary Fri 01-Feb-13 14:33:13

One's supposed to stop pain, the other is supposed to stop bleeding (apparently). You could try something caller Northisterone (it's the only thing that seems to have kept Aunty Flo at bay so far). Main thing is to sort the bleeding out first. It's hard to function if you're knackered all the time, and very stressful when your bathroom looks like a scene from Psycho and you're not able to get off the toilet. I did try acupuncture as well, it did seem as though it was working a little but started to become too expensive.

kalidanger Fri 01-Feb-13 14:55:11

I swore by the iron in the end, for the tiredness. Really really made a discernible difference after even 12 hours. Black stinky poo was a small price to pay. The GP put me on a course of B12 injections and they may or may not have helped, by then I was rattling with pills and stuck full of implants and I couldn't tell hmm

LadyMaryQuiteContrary Fri 01-Feb-13 15:01:51

I have it in liquid form. It's OK. grin

LetsFaceTheMusicAndDance Sun 03-Feb-13 19:56:04

I've had Esmya. Did diddly squat for the size of my fibroid - and neither did embolisation. sad

If your ovaries are left after hysterectomy, you don't go into menopause.

Be aware that there's a reasonable risk of fibroids regrowing after myomectomy.

Lots of women seem to bounce back and get on with their lives after hysterectomy, from what I've read.

I took the long way round, but it's the only option left for me other than to leave well alone. Mine is unlikely to shrink away after the natural menopause.

I'd say, go for the least invasive option first and then work your way along till you feel comfortable with your choices.

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