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Anyone up for a new hysterectomy hand holding thread?

296 replies

Northlondonma · 07/01/2015 10:48

For those who are contemplating, have a date, had one and recovering?

I had mine keyhole with everything removed on Monday. Am 40. Would love to chat to people going through same thing.

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tobee · 07/01/2015 10:58

I had a fibroid resection beginning of December. The surgeon said he couldn't remove it all so will probably need a hysterectomy but will discuss at follow up appointment soon. I'm 46. How are you doing?

(Want to send flowers emoticon but too dim to know how to)

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Costacoffeeplease · 07/01/2015 11:04

I'm 2 years post op, complete abdominal hysterectomy due to fibroids, one ovary left to avoid instant menopause! If I can help anyone contemplating surgery, let me know. AFAIC best thing I've doneSmile

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Northlondonma · 07/01/2015 11:06

Haha Tobee. I have no idea how to do that either! I am being discharged from hospital today. Had keyhole total hysterectomy on Monday due to endometriosis. Luckily consultant confirmed that it was confined to the womb so I am really hoping that this is the end to the years and years of pain.
I'm ok. Emotions all over place. Could not stop crying last night but managed not to weep over my eggs this morning so that's a bonus! Fragile and sore. Had a moment's panic last night that I had done the wrong thing but was mainly due to needed some stronger drugs ;).
Off home to 2 kids. 5 and 2. Am so looking forward to seeing them but also dreaded not being able to do anything with them for the next few weeks. Not sure husband really gets how little I am going to be able to do. He is quickly going to find out!

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Northlondonma · 07/01/2015 11:06

Good luck with your appointment. Let me know how you get on. X

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Dippyeggsrock · 07/01/2015 11:08

I am 6 months post total abdominal hysterectomy and it is the best thing I ever did!!! Best of luck anyone contemplating it.

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RoundYonPreMadonna · 07/01/2015 11:13

I am in the contemplating group....sorry this is long.

Terrible period pain my entire life. Puking, fainting etc. 20 day cycles. Bad ovulating pain. Probably endometriosis but not confirmed. Had laparoscopy 10 years ago that didn't find anything wrong.

Saw consultant last month who said he'd do a hysterectomy if I wanted (poosibly helps that he's a colleague and I know and trust him). Am trying bastard mirena first and have until May to see if it cures me. So far it hurts and I'm on day 16 of bleeding and I am moody as hell.

Anyway....

Things I worry about...

HRT. Will it make me as weird as contaceptive pills/mirena do? OCP has made me very depressed in the past.

General anaesthetic. Freaks me out completely.

Pain. I'm allergic to all the good drugs.

Emotionally. Will I miss my uterus and feel all bereft and empty? Or thankful it won't hurt any more?

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RoundYonPreMadonna · 07/01/2015 11:16

Oh. And I'm 40. 2 DDs 16 & 18. No more babies ever going to happen so I don't need it in there.

And the thought of another 12-15 years of period pain is too much to bear.

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Northlondonma · 07/01/2015 11:21

It is great to hear that you are saying it is the best thing you have ever down.

I had the mirena for 2 years and they removed it during surgery with my cervix. I hated it. It didn't stop my periods (although they were lighter) and made me very hormonal.

I then had zoladex with hrt. I felt terribly sick the whole time but consultant said this was the zoladex and not to hrt. I'm hoping this is the case as I am about to start on hrt now. I have been told though that that there are so many different sorts of hrt that you will find one to suit you.

Generals are a bit freaky. I've had 5 now bit they are out of your system soon enough.

Do you have kids? I thought I would have an attachment to my womb but turns out it was only making my life a misery so no problems waving goodbye!

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tobee · 07/01/2015 11:25

I haven't had pain. Just dreadfully heavy periods which I thought everyone had until gp called after routine blood tests and said I was seriously anaemic.

Was terrified of ga before resection but it was quite lovely actually.

Strangely, my sister had a abdominal partial hysterectomy in November for the same reason as me, exactly the same kind of fibroid. Now I know I'm likely for the same thing I thought that it didn't look too bad. But then I saw her the day after her op, tucked up in a private hospital, with lovely food, tv, magazines, flowers, an en suite and nurses more like servants! I'm probably highly delusional comparing it to my resection which was done vaginally and I was only under for a few minutes, lol!

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Costacoffeeplease · 07/01/2015 11:45

GA no problem - I've had several and here (not UK) they don't even give you a pre med, you get wheeled into theatre fully awake and have a chat to the surgeon/anaesthetist/nurse - I was quite surprised that they had the radio on - I don't know why!

I didn't have any heavy pain killers after the first day or two, had the op on Wednesday afternoon and home Saturday lunchtime. Getting in and out the car wasn't much fun, but it was soon over

I have absolutely no regrets, no emotional missing my uterus (I have no children by choice), no feelings of lack of femininity, no sexual problems - just a huge relief at never going through agonising period pains or flooding through clothes/all over the bed ever ever again - just brilliant

I was also found to be seriously anaemic, I had no idea, but the surgeon told me afterwards that he shouldn't really have operated - I should have had a blood transfusion firstShock and when I came round after the anaesthetic they'd already hooked the transfusion up! I also had an iron transfusion before I was discharged. Even the cleaners and ward orderlies said how worried they had all been when they saw me come in as I was so white!

Recovery is slow, it was about 4 weeks before I went for a really short walk, but built it up fairly quickly making sure I walked every day, you do feel very tired for a while, and I don't think my stomach muscles will ever be the same again, but it's all totally worth it

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Dippyeggsrock · 07/01/2015 11:47

I had mine because of heavy periods. I don't miss my uterus at all but then again I have 2 children so wasn't planning anymore.
The GA was fine and I was out in 2 days. They cut me along my previous c-section scar so the first few days weren't comfortable but I found getting up after 24hours and walking a few steps every couple of hours helped a lot-as did drinking lots of water!
I was worried I was doing the wrong thing but I feel great !

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tobee · 07/01/2015 12:27

Two things everyone says about hysterectomy are 1) the website/forum hystersisters and 2) wind!

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Northlondonma · 07/01/2015 17:58

Oh going to look at hystersisters tonight. Not heard of that. Yes yes yes to the trapped wind. Ouch.

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cosmicboy · 10/01/2015 23:11

Hello everyone, so glad to have found this thread! I'm a week and a day away from mine and I'm terrified Hmm I have one huge fibroid (14cm in diameter!) so will have the lot removed apart from my ovaries as I'm only early 40's. I can't stay away from google and it's not my friend. My biggest fear, apart from some major drama on the day is my body shape changing and the dreaded swollen tummy. I'm taking peppermint oil capsules for the much talked about wind and will be stocking up on other stuff tomorrow. Any tips, suggestions for what I should take to hospital etc would be much appreciated!

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Northlondonma · 11/01/2015 08:54

Hi cosmic and welcome. I am day 6 post op and getting a little better each day. I have to admit that I completely stuck my head in the sand before my operation... It was a last resort for me after living with endometriosis and it making my life miserable. The thing that I was not prepared for was how emotional I was in the immediate days after the operation. Expect this as is completely normal. I had my ovaries removed too though so not sure how much of a bearing that had on the whole situation. This passes and haven't wept for a few days now.. An improvement indeed!!! Get lots of help for when you come home and you won't be able to do much - I am pretty much exhausted by everything at the moment. Good luck and let us know how you get on. Also if you have any specific questions. X

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Northlondonma · 11/01/2015 08:57

When you talk about body changing shape are you talking about possible weight gain or swollen tummy. My tummy is still swollen but going down little by little. I'm finding it hard to wear anything that goes round my waist still. My consultant said that the only reason you will put weight on is if you eat more - this remains to be seen. Am trying to be good as not moving as much as normal.
One other tip is to take nighties into the hospital. Don't take pjs as they will hurt your tummy. I bought two long cotton nighties from John Lewis and they are really comfortable.

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cosmicboy · 11/01/2015 09:12

Thanks North, glad to hear your doing well, you sound really positive Smile I actually started a thread in chat, maybe not the right place but yes, I do worry about weight gain, I'm very slim and very active ( due to my job/lifestyle, I'm no gym bunny! ) It was suggested that I maybe focussing on the weight gain issue as a way of ignoring the other many things I could be scared of about the op, I can see how this could be true! I am slightly petrified Hmm
I'm off to get my last few bits for hospital, thanks for the nightie tip, is there anything else I might need that I may have overlooked?
Anyway, look after yourself, I hope you've got your feet up, take care Smile

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Northlondonma · 11/01/2015 09:24

I also started a chat thread and didn't get much of a response so hopefully we can also help each other here. I was also worried about weight gain and mentioned it to my consultant but he was adamant that it would only be if I started to stuff myself with rubbish food whilst recovering and not really moving. We'll see Wink. I would stay away from google. You will just scare yourself. I only got really scared when I was taken down to the operating theatre but again it was due to sticking head in sand. Look at hystersisters as they have some tips on getting ready for the op. I only found that after and has been helpful. If I think of anymore tips I will let you know.
Am starting to get cabin fever now after these last few days at home so am going to attempt to go out for early dinner with family tonight. Need to get out of the house!

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Northlondonma · 11/01/2015 09:33

Just found your thread! I'm also 40 and in the days post op was feeling sorry for myself that I had had to do this at this age. Still do a little bit but again I have been told this is completely normal. Getting over myself a bit now though Wink. Don't focus on the weight gain concentrate on how much better you will feel in the long run (that's what I keep telling myself!). That said I was weighed before the operation and was more than I normally am (10 pounds - damn you Xmas!) and so am aware that I don't want to gain more. I am going back to 5:2 next week and am not drinking at the moment so saving some cals there too!

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Northlondonma · 11/01/2015 09:37

I even asked how much my womb weighed thinking well that has got to help and was told 150g. Boooooo.

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cosmicboy · 11/01/2015 09:51

I can identify with the womb weighing, I'm convinced my big fibroid is causing any weight gain not all the cake/crisps I consumed over christmas Grin I hope you manage to enjoy your time out, I can imagine its a tad boring being stuck in, I'm not great at sitting still but will have to get used to it short term!

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cosmicboy · 12/01/2015 21:36

How are you feeling today North? Are you week on from your op now? Hope your feeling ok!

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Northlondonma · 13/01/2015 08:03

Hi cosmic! Yes a week on and up and down. Sunday I felt well enough to go out for a local dinner with kids but wow yesterday was back to feeling exhausted and sore. Maybe over pushed things. Going to take it easy this week now. It's a slow recovery and you have to remember not to overdo. How are you feeling? Is your op on Monday? X

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cosmicboy · 13/01/2015 09:39

Morning all. Does sound like you over did it North, hope your resting today! I don't blame you though, it must be hard, especially as your children are so young. Hope they're doing ok? Yes, I'm less than a week away now! Still focussing on pointless nonsense, my weight, buying the right bag etc so as to distract myself from any genuine worries that I have buried away! Anyway, please take it easy, hope your feeling better soon x

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Northlondonma · 13/01/2015 13:20

Hey! Yes am back to resting again. Am watching the final series if homeland whilst doing my nails ;). The kids are doing ok but eldest 5 is a little bewildered and playing up and the 2 year old does not understand why I can't pick him up. He has taken to ignoring me now Hmm.
One last thing to remember. Take in jogging bottoms for after the operation. You need something loose around your stomach. I am still wearing mine and having to wear them low on hips like some teenage rapper. So not a good look!

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