Hysterectomy a step too far right now?

[JiminyCricket]

Hi long term mner, haven't posted for ages, grateful for any thoughts, and sorry if tmi. I have a large fibroid which is causing me the full range of incontinence problems (go about a million times a day, bladder not emptying properly, leaking, often can't go at all first thing in the morning for about half an hour, which is kinda painful, have wet myself quite badly now in various locations - M & S cafe, tesco and a swimming pool change room so now pads all the way). But I don't get bad (any) periods from the fibroid because I have a Mirena in place (but the threads are lost - I wanted to have it out becasue its causing me annoying itching on my arms and legs which is one of its side effects). Stressed and not sleeping well too. Saw a gynae doctor the other day and have gone on waiting list for hysterectomy (sub-total, leaving ovaries and cervix). But now reading about hysterectomy more I think I might be better off just putting up with it? But then some days it all makes me really miserable, other days its kind of just normal. I'm guessing my symptoms would get worse (periods) if I had the coil out. Slightly worried the coil might get expelled, because my last two did and now I'm guessing that was becasue of the fibroid. But I guess I would notice because I did last times. I'm 39, don't want any more babies. Feel kind of stuck.

Sorry to hear about the problems you have been having and I didn't want to read and run.

When I was 30 I was suffering from several fibroids. Our situations may be different as I hadn't had my child then, but I had a hysteoscopic resection which basically just shaved away the fibroids with an electric instrument passed through the cervix - this then left my womb intact and fertility unaffected. Obviously, that won't deal with your fertility but once the fibroid is dealt with, maybe that will help with contraception choices? I personally have the implant which is great for me as I have no periods at all!

Hope it all works out for you x

Is taking the fibroid out not an option?

To be honest if you're sure you don't want more kids I'd go for the hysterectomy.

The dr mentioned embrolisation (?) which is where they try to shrink the fibroid, but then the nurse mentioned that it wouldn't be suitable due to size of fibroid. Thanks for your replies and views, its helpful. They didn't mention other options, perhaps because I was clear about not wanting future pregnancy?

My sympathies JimineyCricket.

I am being invesigated for fibroids (RabbitCam soon ). I feel your pain on the bladder...been suffering for years now....GP said "Irritable bladder". Always got spare pants and trousers in my bag,have to know every public convenience when out or I won't go. Regularly wet myself walking home and wrapping jacket around my waist like a teenager....I'm 48 ffs

Periods are horrendous....low in iron (awaiting slooooow GP to see me re this)
Look 6 months gone....and the dragging sensation is most peculiar.

I would have mine whipped out in a shot as my shop is now closed....am also in the Peri with a zz top beard....ooohhhh the good life!

quick name change because I'm embarassed to say this but .....
I found ( may of course be different for others ) that having a hysterectomy totally changed orgasms .
Apparently it's something to do with contraction of womb - which obviously doesn't happen after hystererctomy .
But no one talks about it .

How big is your fibroid?
A friend had one like a grapefruit she said, and was put on a hormone drug to shrink it- like induced menopause- the when it had shrunk she had an op- like a caesarian- to remove it.

Has this not been offered?

if you are unsure you should ask for a referral to another gynae as they all have different ideas- and some TBH are about saving money if it's NHS.

what you want are all the options.

Thanks everyone for your replies - yskt - I had read about the womb contraction thing - its all those possible outcomes that are really hard to weigh up because you don;t know which will affect you. Including continance problems which would make it a bit pointless. CCN, hope your investigations go OK and you get a good outcome from it - you see, I haven't had problems for that long...think I will chat to the GP about it as next step.

will check in later or tomorrow

I know exactly how you feel re the bladder issues you've mentioned. I had fibroid embolisation a few months ago (if you need any info feel free to ask). It didn't really work to be honest and I'm scheduled to have a hysterectomy in a couple of weeks.

Whatever you decide, talk to as many Doctors/Consultants as you can.

thanks - just saw your message SqS - the op is scheduled now, and every day I notice how much it affects me (all little things but they add up) so on balance think am doing the right thing, but realise its going to be a long recovery time - and am quite scared.

Hi Jiminy - "standard" recovery is a couple of nights in hospital and 6 weeks or so after. Will you be taking time off work/domestic duties etc?

Hi - yes, all arranged for time off work, and lots of offers of help at home. Its sinking in how little I will be able to do though - luckily the dd's are pretty independent around the house, DH will take time of as needed and my Mum is close by and will do some school runs etc. I am tired and stressed at the mo, so not looking forward to feling more rubbish for a while, but as my GP put it - enforced rest, at least

Hi Jiminy & SquashedSuirrel- seems there are a few of us in the same boat. I have a 10cm fibroid and am 46- was offered hysterectomy or embolisation. I've opted for the hysterectomy having read up on embolisation. Op is scheduled for 8th Feb.

Can't say I relish the recovery but I'm of the opinion I can't feel a great deal worse than I do now, and I'd rather be on the road to recovery than living with the pain, tiredness & dragging feeling I do now.

I have little support at home (save for twin boys aged 13) so it could be a tough few weeks but I've tried to plan in advance so I (and they) are prepared.

demo sorry you've had a tough time.

I had my hysterectomy a couple of weeks ago and although I'm obviously still healing, I'm so pleased that I had it done. I equally don't have any support here (although I don't have dc) but to be honest, have found that I've been able to do a lot more than I expected.

I've not really been in much pain at all and have been walking for 30 mins + each day without problems (although I've built up to that slowly). I appreciate everyone's experience is different but if you have any questions please feel free to ask.

As you have a family, I would suggest buying food on-line or at least buying in as many heavy items as you can in advance ie tins, bottles of squash, juice, potatoes etc.

Hi SS. Your experience sounds pretty positive so that is reassuring. I've been told to expect a vertical abdominal incision as the fibroid is so large & quite high up. I have a feeling this could be troublesome healing wise. I'm opting to keep my ovaries but lose my cervix as I've had abnormal smears & I thought this would be one less long-term worry.

I had a c-section with my twins & recovered reasonably quickly so I'm hoping it may be a similar experience but I am aware it might not be! My biggest fear is trapped air in my shoulders- I had this following my c-section & it was nothing short of excruciating!

I'm seeing the consultant next week- is there anything else I should be asking?

I'm stocking up on heavier food items & quick cook stuff for my boys. I'll need to do my food shop online for a few weeks but that suits me fine.

What about clothing? I'm guessing nothing tight around the middle for a while. I've bought a few pairs of warm, loose fitting PJ's to lounge around in for the first week or so.

I hope your recovery continues well.

I had a horizontal incision and kept my ovaries and cervix.

Someone suggested taking peppermint capsules before the op and afterwards which I did. I must admit I did have trapped air issues but they were only v minor compared to a couple of other ladies on the Ward with me. I bought the capsules from Holland and Barrett for about £3.

I bought a couple of tracksuits (felt really odd as haven't had a track suit since I was about 12!). They've been fantastic, I've lived in them. I also bought some leggings from Next (£18) and wear them as well. I tried to put jeans on the other days and it was uncomfortable.

When I was actually in hospital I wore a combination of nightshirts and pj's with flip flops. I was only in for 3 night which surprised me. The Nurses were all amazing ~ I've been in so many times with fibroid issues that they've become friends! One of the ladies in the next bed had a laptop with her and we watched a film one evening, it was great. We were sat in pj's eating fruit, watching a movie. It didn't feel like hospital.

Be prepared to walk about after the operation ie I had my op late in the evening and they had me up and out of bed at 7am! I was dreading it but once I was out of bed I was fine (the Nurses will teach you how to get out of bed so that you don't damage yourself, although if you've had a c-section you probably know). I had to walk about 60 meters but ended up doing more simply because it was something different to do.

I'm trying to think of things to ask the consultant and can't think of anything despite knowing there were questions I'd wished I'd asked! If I think of anything I'll post later on.

Ooh (gosh this is turning out to be quite long, sorry!) I had my wound stitched up but was told that some women have the wound stapled up. If staples are used, you need to remember to ask the Nurses to give you a 'staple removing tool' to take home with you. When you have the staples removed at your GP Surgery, take the tool with you as it's not something they generally have.

HTH

Oh yes, something that really helped me when I was just sitting down watching telly or walking about, was a rolled up towel. Basically, if you take a normal hand towel and roll it up into a sausage (secure it with rubber bands), it somehow helps when held against your abdomen.

The physio actually recommended it to me to use so that instead of clutching my abdomen when I was walking, I was holding the towel against myself. I haven't explained it too well but I'm sure the hospital will mention it. The physio also gave me a few exercises to do which have been useful.

If I can help with anything else please let me know. It was so useful for me to hear other peoples hints and experiences. I hope it all goes smoothly ~ if you've already had a c-section and recovered quite easily then hopefully it'll be similar. Don't believe all the horror stories, clearly some people are very unlucky and have a hard time but it's not the norm.

Thank you so much for the tips- I really appreciate them.

This has all happpened so quickly as up until mid December I had no idea I had a fibroid, let alone a small melon sized one! I had had niggling symptoms but no real pain or bleeding. I got a private referral by my GP & the consultant was gobsmacked at the size of it!

At present, apart from feeling uncomfortable & needing a wee frequently my biggest issue is tiredness. I am permanently exhausted.

I am going shopping tomorrow so I will get the Peppermint Capsules & a few more items of slouching about clothing!

Thank you again for sharing your experiences to date.

I was similar to you in that I didn't have any symptoms at all either. If I remember correctly my largest fibroid was 20cm by 15cm so I guess about the same as yours. I also had to wee alot.

It's such a relief to know that once I'm healed, things will all be normal ie no weeing loads, no pain, no back ache, pains etc. You will be tired for a few weeks or so after your op but at least you know that'll pass.

Definitely get the capsules and comfy clothes. I bought some cheapo bath towels to take with me as well. I love a huge towel. I also bought some cheapo large Bridget Jones knickers mainly so that the elastic waist band would sit above the wound. Don't forget to take earplugs, antibac wipes, panty liners and peppermint tea bags with you as well.

If I think of anything else, I'll do another post.

Sorry you're having a rough time Jiminny - BUT look on the bright side. Your family is finished, you have a massive fibroid pressing on your bladder and making you incontinent, and you have contraception which goes walkabout and gives you side effect symptoms.

My friend had a massive fibroid and had a hysterectomy - she said it was the best thing ever. My mum has a hysterectomy too and the relief was amazing for her - she put hers off till she was 45 and as she says herself - wasted 5 years of her life. She felt great after it.

Best of luck, and remember to get a surgeon who is careful of the blood vessels serving your ovaries, so you don't launch into rapid menopause.
They test your hormones very well now.

I've been recommended a hysterectomy too, so will be interested to hear how you get on.

Jiminny I'm glad you've got the operation booked in. Don't be scared. You've got loads of support and help and as I said to demo, my experience has been really positive so far.

You must rest once you've had the operation and whilst I'm sure it'll be difficult for a few days afterwards, you know that you're on the road to recovery. I really hope things work out ok, try not to get too stressed and if I can help then let me know.

This support and information is so truly helpful and has made me cry, but in a good way - I have been so so tired too, couldn't really believe it was mainly down to the fibroid, but hearing from you has made me think it is? I would love to be rid of that - totallyps, thanks, what you wrote is really kind and really affirming. Demo my op is on the 3rd, so i guess we will be doing recovery at the same time. Do i really need earplugs? I haven;t spent much time in hospital before. Was thinking of getting lots of podcasts on my ipod to listen to though.

Jiminy I only mentioned earplugs as some Wards can be noisy ie if you're near the Nurses station. I also took an Ipod and it was fine, I just went to sleep with it on.

I honestly think you'll be totally amazed how much better your life is after the operation. It's just such a relief.

Hi Jiminy It looks like we are going to be pretty much in this together so it could be good to have each other as support. Certainly hearing from SS & the others up thread has been very reassuring.

Do you work? My employers haven't been that great to be honest. I thought giving them some notice allowing them time to plan might have been better received ...but no, it is clearly rather inconvenient for them! However, having given them 26 years of my working life to date, I've decided I come first this time!

I am pleased to know it's not just me who is exhausted. I sleep every afternoon at the moment or I feel too sick with tiredness to function. Fortunately my boys are understanding. I think the size of my pot-belly has made them realise I am not feeling that well!

Fingers crossed that despite the initial pain & recovery, we'll have a new lease of life in about 8 weeks!

That's rubbish about your employer - I work in the NHS but my manager just said 'whatever you need', and the team have shared my caseload out between them, its been difficult but they have made it easy iyswim.

Have you been in for a pre-op yet? They said to have someone with you for the first 24-48 hours after leaving hospital. I have just given DH and my Mum a rota, luckily they are both apparently quite able to help out and am quite glad my week two of recovery is half term because no activities on for the kids and no school runs to organise.

Thanks again SS - wishing you well in your recovery. I'm soo looking forward to the pressure stockings...