Hysterectomy : Saw gynea surgeon this... - Endometriosis UK

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Hysterectomy

Pookey profile image
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Saw gynea surgeon this morning. Going in for a hysterectomy in about a month. Need bowel and urology surgeons in the op too as everything is stuck together. RELIEF as I'm in agony !!!

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Pookey
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20 Replies

Hi Pookey, I had total hysterectomy on 15th January 2014, with part bowel, part abdominal wall and part pelvic wall removed too. I can honestly say, after over 18 years of being in constant pain, this has been the best 6 months of my life. No painkillers, no bleeding and I've lost a truck load of weight that I hadn't been able to lose before! Make sure you rest well and do as you are told after your operation. xx

in reply to

That's great news Fordie!

Any advice for us ladies that will (hopefully) be going in to have a hysterectomy?

Barbara x

in reply to

Hi, here is a list of things I did and didn't do.

BEFORE GOING INTO HOSPITAL

1. Get main heavy shopping in to cover you for at least 3 months.

2. Clean the house from top to bottom so you won't be tempted to overdo things.

3. Get dvds, books, plates, cups, bowls down to waist level surfaces so you have no need to be stretching.

4. Give a set of keys (and alarm code) to a trusted family member/friend so they can use it in an emergency - for example, if you get in the bath and find you can't get out again.

5. Purchase loose fitting pyjamas or nightshirts as they will enable you to move more freely.

6. If you can prepare some meals in advance and put them in the freezer that would be good. Just take into consideration that your appetite won't be as it was before you had the operation, so make the portions a little smaller.

7. Contact your local supermarket and let them know of your situation. When you place an online order, they will be able to inform the driver to bring your shopping straight into your kitchen area for you. Mine even unpacked the shopping and put it away for me (that was with TESCO).

8. Purchase a flask so you don't have to keep getting up and down all the time to make drinks.

9. Purchasing bottled water is a must too. You won't have the energy to be getting up and down all the time, so having a bottle of water with you will help.

10. If you haven't got a downstairs toilet, consider borrowing a commode from the Red Cross - costs £25 and you keep it for as long as you need, you get the £25 back when you return it too - so basically you get it for free!

11. Purchase extra underwear. You won't be able to do your clothes washing as regularly as you did before the operation.

12. Purchase extra batteries for ALL remote controls etc. Sods law the batteries will die when you don't have the ability to get out to purchase them.

WHEN IN HOSPITAL

1. Don't let them kick you out before you are completely ready to go home. They tried to kick me out 24 hours after I had had my operation - good job my Consultant was in the Ward at the time and he intervened - I ended up going home 4 days afterwards instead.

2. Don't be afraid to ask to speak with the Chef if you have special dietary requirements. I did this and the Chef came to see me before each meal and prepared exactly what I asked for.

3. Make sure they change your jug of water and glass at each meal time. They are required to do this but they normally slack off and do it once a day.

4. If you need extra pillows ask for them. They have a stock cupboard full of them!

5. Take some anti-bacterial toilet wipes with you to use in the bathrooms as you won't have your own on-suite, and you don't want to pick up infections from other peoples lack of hygiene maintenance.

6. If you don't feel up to having visitors, just let the staff know and they will stop anybody coming through to visit you.

WHEN YOU GET HOME FROM HOSPITAL

1. Rest as much as you can lying down. Sitting up makes your insides stick together and is then painful when you stand up as it rips.

2. Don't worry about getting properly dressed, hair done, make-up etc for the first few weeks. You will find that you don't have much energy left after having a bath/shower, so just wear comfy pyjamas.

3. Make sure your slippers are not mule type. If needs be purchase full fitting slippers to wear for the first month or so as they will make you more stable on your feet.

4. Allow people to help you to do anything. Don't be afraid to ask visitors to make their own drink when they come, get them to make you one too and ask them to refill your flask for you before they leave.

5. Sleep when you want to sleep, there is no point in trying to stay awake until bed time, you will only make yourself ill.

6. Don't rush back to work (housework and paid work). Make sure your body is 100% ready before you embark on work whatsoever.

7. Don't use fragrance body products anywhere on your body until your wound is completely healed. Bathe using liquid savlon.

8. Be honest with your GP. Mine has been great and even referred me for bone density scans, appointment with nutritionist to see about having natural menopause supplements instead of HRT so endo doesn't grow back.

9. Don't worry if you have days where you are feeling angry and you want to cry, apparently having a hysterectomy is like experiencing a death, so you will need to grieve - don't feel guilty or apologise about it either!

I think this is all the advice I have right now. If I remember anything else I will be sure to let you know.

Pookey profile image
Pookey in reply to

Wow! Thanks so much for your advise. So much there that I didn't think of. I'm hoping the op will be in the 6 weeks holiday because if the school run. I have 2 kids. 8 and 11. My mum is too ill to take them and my hubby is self employed mini bus driver so he is out most of the time. My son has ADHD and goes to a special school. He is so uncontrollable that nobody can look after him. I'm dreading after the op as I know I will have to carry on as normal. My husband has no compassion. I was hoovering the day I came home from hospital after a 4 hour op to remove endo from my ureta. My kidney has shriveled because of it. I will have to let the hospital know that I can't be pushed out too quick. The prob is my mum will have to look after my kids when he is at work and my son physically beats up my 8 year old daughter. My mum couldn't cope with that. I really am not looking forward to this but I have to have it done as it's effecting my bowel, kidneys etc. I'm diabetic so I need my kidneys. My left one only works at 17 per cent now anyway.

Thanks again for all if your advise. I will let you know how I get on.

Karen xxx

in reply to Pookey

You are welcome dear. Can you speak with Social Service regarding your Son? They may be able to get him into a respite summer holiday club for the 6 weeks so at least you can have a short time to recover. It might be worth giving them a ring. xx

in reply to

Thank you so much. I will print out the lists.... So helpful.

Where should the "buying supplies of chocolate" go ?

Thank you again.

X

in reply to

Awh thank you too. I didn't include the "buying supplies of chocolate" on the list just because I can't eat anything containing dairy, wheat, soya or gluten, so chocolate is a no go area for me. Maybe you can put it on the Before, During and After list, lol xx

in reply to

Hello again.

Can I ask if you had a catheter in after your surgery? And did you have a lot of bleeding after?

Barbara x

in reply to

Hiya. Yes I had a catheter in for 48 hours and also had a drain in to take out excess blood so that any left over endometriosis wouldn't feed of it. I didn't have any "period" type bleed though and haven't had any since the day before I went in to have surgery. xx

Twinky12 profile image
Twinky12 in reply to

Thanks for the list have printed it off x

in reply to Twinky12

My pleasure. If I think of anything else I shall let you know x

IndigoBlue61 profile image
IndigoBlue61 in reply to

Thank you for such detailed advice 😊 Very helpful to an anxious newbie 😊

Gay333 profile image
Gay333

Hi I'm 32 and been asking 4 a hysterectomy coz I'm in agony all the time. But thay keep talling me no

Twinky12 profile image
Twinky12 in reply to Gay333

I have been asking for a hysterectomy and have been told I need to try one treatment before it will be considered. I have been put on proverb tablets which have pretty much not done a thing, got my next appointment in July so I'm hoping he will agree to a hysterectomy I just want a pain free life is this too much to ask?

That's really good news and nice and quickly too.

I have asked for a hysterectomy also but I have to have a lap done first to determine the extent of bowel involvement.

Hopefully we will both be pain free by Christmas !

Best wishes,

Barbara

Twinky12 profile image
Twinky12 in reply to

Hopefully your pain will be over soon Barbara x

in reply to Twinky12

My fingers are crossed for us all xxx

IndigoBlue61 profile image
IndigoBlue61 in reply to

Hello Barbara, did you get a hysterectomy? Hope everything went well for you 😊

Pookey profile image
Pookey

Thanks everyone for your support. My last treatment was the mirena coil. Total waste of time! This is long over due as endo was growing in my ureta (the tube from kidney to bladder) so now my left kidney has shrivelled as is only working at 17 percent. If it does the same on the right I'm in trouble. My bowel is stuck to my womb/ovary. Wen I go to the loo (number 2) I'm in so much pain after. I can't go at all when I'm on my 8 day period, and that's on the coil. He is having a meeting with bowel/urology surgeons then I'm being put on top of the list to have it all ripped out! Better late than never. I'm 43 and have 2 children.

Thanks again for everyone's kind words and support.

Karen xxx

IndigoBlue61 profile image
IndigoBlue61 in reply to Pookey

Hello Pookey

Did you have the operation? How did it go? Hope everything went well for you 😊

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