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Monster fibroid - is hysterectomy the answer??

(29 Posts)
MrsBungle50 Mon 13-Jul-15 09:45:30

Hi everyone. I have a fibroid dilemma and I'm hoping your experiences will help me decide what to do..

I have one 10cm fibroid growing on the outside of my womb. It doesn't cause excessive bleeding but it sits on my bladder and bowel and I'm just constantly peeing day and night. I have had to use a catheter at times as it can block my bladder completely. Bowels are all over the place, stomach is huge, back aches all the time.

I had an embolisation in January which worked for the first 3 months and I felt fine but now the bastard thing has sourced a new blood supply and is growing back with a vengeance.

I have 2 choices, another embolisation or a full hysterectomy. I'm 52 next birthday so don't need my bits any more!

My main worry is the recovery part of a hysterectomy. I have a disabled 14 year old son and I am his main carer. He needs full on care 24 hours a day and it is physically very demanding. I have a husband who helps a lot but can't have much time off work and I have no family. What is recovering from a hysterectomy really like and how long before I am back up to full speed??

Your experiences/thoughts much appreciated.

tobee Mon 13-Jul-15 20:22:00

Hello. I'm 4 weeks on Wednesday from sub-total abdominal hysterectomy and my sister had same last November. I had appalling bleeding/flooding after a hysteroscopy didn't do the trick last December for a couple of days each month and my heamoglobin levels where bad enough to be classed as urgent for the hysterectomy. Also the (5 cm) stupid fibroid dropped into my cervix after the hysteroscopy which prolapsed pretty badly and made going to the loo a concerning experience especially just before my period. So far, the plus side of not bleeding and prolapse seemingly going away has been brilliant. My sister says hers has been great as well.

However, about 8 days after the op, I had a choking/coughing fit and then some vaginal and quite a lot of wound bleeding for a few days which the gp surgery treated me for. (I'm guessing the coughing caused this). I'm lucky that I have a 20 year old and 16 year old dc s at home at the mo who can care for me. I'm not carrying shopping still, can't drive and even worry about lifting a full kettle, because of worry about complications of adhesions. The kids can help me with a lot but the housework has gone to blazes. I can walk quite a bit now, have not had any pain but feel sore now and then. I often feel the need for a nap in the daytime. Sitting up can be uncomfortable if on a hard chair. But I've been cooking a bit in the last week.

I know there are lots of other things that can help with fibroids and I recommend talking to your gp and especially your gynaecologist to discuss the options thoroughly as the hysterectomy is major surgery. I chose to have one after the hysteroscopy didn't work out because I didn't want to go through any more treatments that might not work. I felt like I'd bled enough!

Sorry for the long post but I thought I'd give you a snapshot of how things are for me now.

Hope this helps. Good luck with your decision.

pinkfrocks Mon 13-Jul-15 21:01:17

tobee- sorry to butt in but did you mean an emblation and not a hysteroscopy? A hysteroscopy is an investigation with a tiny camera into the uterus (I had one a few years back) but it's not a treatment unless they also use the 'access' at the time to lop off any polyps etc. Do you mean you fibroid prolapsed into your vagina or your cervix dropped?

I have had 2 vaginal repairs for prolapse- first was most major and 2nd was slight adjustment. The recovery time is the same as hysterectomy. For 6 weeks you cannot lift anything more than a half-full kettle, you shouldn't drive or push the trolley in the supermarket. You are supposed to rest daily with your feet up for a while.

OP unless there are reasons not to, can they remove the fibroid and leave everything else well alone? It ought to shrink after the menopause anyway as fibroids need oestrogen to grow .

tobee Mon 13-Jul-15 21:19:28

Hi again. Sorry I meant to say I had a fibroid re-section through hysteroscopy! That's what it said on my consent form. The procedure was done through the vagina under general anaesthetic and was a day surgery case. Really I was only effected by the anaesthetic in terms of rest. The intention was to cut out the fibroid, as well as look around. When I came to, my consultant told me he'd cut out most of it. He had said it was in the uterine wall but on a stalk (lovely). At my follow up appointment I mentioned the prolapsing issues and he did an internal and said the stalk had enabled the fibroid to pop into the cervix until I sorted it out digitally iyswim! When he did the hysterectomy he said as he removed the uterus the fibroid fell out through the vagina, so It made me feel like some sort of terrible vending machine (even more lovely)!

Sorry if tmi.

mummylin2495 Mon 13-Jul-15 21:21:34

I had a total hysterectomy and oopherectomy as well ( ovarie removal ) I believe that a lot depends on which op you have. If you have to be cut it us a longer recovery time. This us what I had. My recovery time was a few weeks, but from about two weeks every day was better. The worst thing for me was that my dh chose to drive down a road with humps in when he bought me home !
After a couple of weeks I started doing little chores and walking a bit further each day. The weeks just flew by from then, I don't know what time they give now but at that time I had 12 weeks off work. But that may be different now. My final week was spent in Majorca as a treat from Dh.
I was glad that I had it done as I had so many episodes of random bleeding, also sex was very painful. The largest fibroid was like a cricket ball, and there were several smaller ones as well.
My dh didn't have time off work but I had a friend that used to come in for a while, also my children were young adults so I didnt have that to worry about either
I would say , to think about it, see what options there are and then decide, for me it was the right thing to do. Good luck

Heathcliff27 Mon 13-Jul-15 21:31:10

Hi, i had total hysterectomy 6 weeks ago, due to prolapse rather than fibroids but thought i'd give you my experience of recovery. I spent 5 days in hospital and spent most of the first week at home in bed, very tired and feeling sick most of the time.

Over the last few weeks i've not really spent much time outside the house, am unable to stand for too long without needing to sit down, have been pottering about house doing odd bits of light housework, still no hoovering yet and only started doing minimal ironing yesterday. No driving for me yet either due to pain in lower abdomen.

My job involves standing for long periods and lots of stairs so I will be off work for 13 weeks in total. Although I dont feel unwell anymore the tiredness is still an issue. I have been very lucky to have a lot of help at home, without that I couldnt've coped with the kids.

PoshPenny Tue 14-Jul-15 09:25:20

I think you would need to cover yourself for 6 weeks if you opt for hysterectomy. Obviously you'll be functioning better each day once the healing starts, but you can't rush healing.

halfpint1967 Tue 14-Jul-15 10:30:26

mummylin was the pain during sex caused by the fibroid or waa there another reason for that?

halfpint1967 Tue 14-Jul-15 10:32:20

sorry posted too soon!
heathcliff27 was yr prolapse a vaginal one or a bladder/bowel one?

slkk Tue 14-Jul-15 10:37:45

Had a robot assisted total hysterectomy last week. In hospital 2 nights and feeling ok but tired and sore now. Won't be lifting for a while but can operate ok. Everything removed through belly button. Have 4 smallish wounds on tummy. Robot assisted leads to quicker recovery but not everyone is suitable for it.

slkk Tue 14-Jul-15 10:39:17

Dh has taken a week off work to help with kids. Very little bleeding so far but constipation.

mummylin2495 Tue 14-Jul-15 11:32:19

Yes halfpint,the large fibroid was the cause. For me I went straight into menopause as my ovaries were taken, but that wasn't a problem for me as I certainly wasn't planning more children at 50 !
I notice a pp said she had suffered no pain and I can honestly say the same thing, I did not need a single pain killer, but I did have anti sickness injections, plus a heparin jab each day (blood thinner)
Overall was the best thing for me, the worst was the sickness which continued even when I got home,prob the anaesthetic .

halfpint1967 Tue 14-Jul-15 11:39:01

good about the pain mummylin not so good about the sickness.poor u!
was it a vaginal hyst u had?

mummylin2495 Tue 14-Jul-15 12:33:01

No I was cut across bikini line. Had staples which I dreaded being taken out, but was actually fine. Had op on a wed and they let me go home on Sunday morning which was fine. The sickness may not affect everyone , but was one of the side affects for me, and one other thing, wind !! Was more painful than the whole op. I can't remember what I took for that. Prob peppermint oil or something.
One very funny thing that happened still amuses dh and I. I went in on tues and a doc came round and said he wanted to examine me, I assumed he meant an internal so took my jeans off. Turns out he wanted to listen to my heart and do blood pressure ! My dh said to him " she has always been a bit forward " it was so funny and did I feel an idiot.

halfpint1967 Tue 14-Jul-15 13:58:27

yea ive read that wind can be a real prob after a hyst.
touch wood ive never been sick with the aneasthetic up to now so hopefully itll stay that way!smile
lol at yr hubbys joke!!grin

Heathcliff27 Tue 14-Jul-15 14:05:19

Halfpint, mine was a uterine prolapse, uterus was falling right down vagina. I also had a repair job done at the same time.

halfpint1967 Tue 14-Jul-15 14:22:13

that sounds nasty heathcliff!
what repair job did u have done at same time as hyst?
im gonna ask the gyny when i see her if they can do pelvic floor repair same time as hyst

Heathcliff27 Tue 14-Jul-15 14:31:05

I had a vaginal repair done, they tightened it all up. Dont know if its worked yet, still very swollen there, my hysterectomy was done vaginally. They left ovaries and one fallopian tube, got rid of a damaged fallopian tube. I had already been having some menopause symptoms so i'm on hrt pesseries at the moment. Due to my age (42) i'll probably have to have more surgery later on as theres a possibility that there may be another prolapse in the future.

halfpint1967 Tue 14-Jul-15 15:15:24

oh no poor u heathcliffsadthinking there may be another surgery to come for u
mines more bladder really.stress incontinence.feel safer wearing a pad all the time pretty much especially when im out&aboutshock

MrsBungle50 Sun 19-Jul-15 19:48:08

Thanks everyone, I'm learning a lot and certainly know more about what to expect. I am always sick after an anaesthetic and with morphine so I can warn them in advance. I am going to see gynae again to talk it over and hope to get a carer in to help with my son for a few weeks at least if I go for the op.

mummylin, did they give you any hrt or did you just go cold turkey on the hormones. I am likely to loose my ovaries too and they mentioned hrt for 6 months??

pinkfrocks it is growing on the outside of my womb so it can't be removed. No sign of the menopause either. I'm nearly 52 and not skipped a beat yet. sigh.

And wind! haha that could be fun. After years of trapped wind through this blessed fibroid I'm relishing the thought of being able to just let it go!!!

mummylin2495 Sun 19-Jul-15 21:21:47

Yes I had them straight away. I took them for quite a while. The one I had was called Premarin. I didn't think they made any difference until at one time I ran out and could get a new prescription for about a week ! Then I knew that they were certainly helping.
I hope you we have helped explain certain things and that you can come to a decision about what is best for you.

pinkfrocks Sun 19-Jul-15 21:22:59

I'd really caution you against having your ovaries removed as well. some drs seem scalpel happy and want to whip it all out.
Your ovaries are actually still useful even later in life
www.nhs.uk/Conditions/Hysterectomy/Pages/Considerations.aspx
You could use HRT for many years not 6 months! <<despairs at drs thinking 6 months is enough>>

mummylin2495 Sun 19-Jul-15 21:23:15

The wind I found to be quite painful immediately after my op !

mummylin2495 Sun 19-Jul-15 21:28:18

I did have HRT for many years Pinkfrocks. But I have to say that there was a lady of 86 in the same ward as I was who had had a hysterectomy 40 yrs before and she was in to have her ovaries removed as they had turned cancerous. So for me it was the right thing to have them removed at the same time.
Back to HRT, I have a friend who took them for years. As did I After about a two year break she started having symptoms of menopause again. Despite by now being in her 60,s and they put her back on them and she is still taking them today !

pinkfrocks Sun 19-Jul-15 22:06:30

It's really not that unusual to be on HRT in your 60s.
The new guidelines from NICE ( 1 June 2015) have changed the time limits and say there is no limit on how long it's used.
If you read the NHS link above, it's recommended that ovaries are not removed unless there is a definite risk of cancer ( eg familial.)
At 86 TBH most people are going to get something - and it's rare to have OC at that age- very rare.

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