Full hysterectomy with endo

[Windancer05]

Hello everyone,

I'm due to have a full hysterectomy due to fibroids. After being pushed pillar to post fit over 5 years, I finally saw a good consultant who after I had been rushed to hospital with an infection that left me weak as a kitten and very near getting septicaemia ordered an MRI for me and found I have endometriosis ....so where before a partial hysterectomy was going to be fine now she says everything has to go and she isn't going to do it via keyhole but has to open me up. I'm very scared as I didn't ask all the questions I should have. I wasn't expecting to have endometriosis so just went numb. I've always had awful periods and suffered from dysmenorrhea for the last 10 years and have thrombosis so artificial hormones such as the pill never suited me now I will have to take HRT...

I have another appointment with her in a week and would really appreciate any pointers at all...any questions you lovely women wished you had asked....I didn't even know there was a support belt you can wear post surgery......please please help me.

With much respect

Windancer05

[zzmn]

Hi windancer, i can completely understand your concerns hunny. I had endometriosis (25) and at first had an incision to remove all fibroids and basically put everything back into their correct places. Im now 47 and for the last 4/5 years suffered with really heavy periods and only had a few days every couple of months where i was clear. I have now had a total hysterectomy (4/5 weeks ago) but they did leave an ovary in to cover me....meaning that i wont go through menopause straight away hence no HRT. So ask if this can apply to you as well. A hysterectomy is a major operation...i have had so many surgeries due to endo/ ectopics/misc but i will be honest....this surgery for me was definately major....all i can suggest is that you rest and have someone to look after you....it takes time to recover and im still recovering.

I bought a support belt from the site "hysterectomy association" linda parker.....an amazing site. You can either pay to join or you can just subscribe to email which i have done. The belt is £12.89 and it really helps alot...highly recommend it. Plus you get emails everyday explaining what you should and shouldnt be doing and they really help.

I would say...start drinking plenty of water a few day before op and try and lay off the bread too. I did both of those and didnt suffer from a UTI or constipation. Going to the loo (bowels) will feel uncomfortable....put one bum cheek on one side of loo and the other on the other side and lean forward a little....less strain less pain....it works!

Hope this helps....hugs xxx

[Windancer05 in reply to zzmn]

Thank you so much....I was beginning to feel so alone and so pathetic. Reading the stories on this site as well as other sites...I feel as though I'm being a wimp. I will get the belt and stop bread. I'm already doing my best to drink at least 1.5 litres of water a day. I will pray you heal as soon as possible, lots of good wishes, xxx

[zzmn]

Linda parkinson hardman hysterectomy-association.org.uk

[zzmn]

Dont be daft...youre not a wimp...if you read the question i posted...i thought i was being a drama queen because i don't know anyone whom has had this op. Everyone recovers differently so just remember we are all different. Good luck with your Op...sending wishes and hugs xxx

[Windancer05 in reply to zzmn]

Thank you again. May I how soon you started to wear the belt after your op please? And have you any pointers on scar healing...I'm doing my best to get everything ready before I go in.

Much respect

Hx

[zzmn]

I wore mine about 10 days after but that was only because i didnt know about them until i went on to the linda parkinson site. They are brilliant because without it i was constantly holding my belly, for some reason i though everything was going to drop out. The belt makes you feel secure...its like a sucky in pair of knickers without the gusset and the front extends over your scar. My scar is fab....ive bathed and showered everyday and always make sure my scar is perfectly dry...my hubby did have to dry it at first because my tummy was so swollen i couldnt reach. It can take a good 12mths for the scar to fade...it doesnt fade completely...i only know this because this is my 4th incision...but its ok because its practically your knicker line.

The top tips i would say are

1. Order support belt

2. Drink plenty of water and take bottled water into hospital

3. Dont eat bread or anything that will cause constipation whilst in hospital (i ate lots of veg)

4. Bowels...pull one bum cheek on one side of seat...the other on the other...lean forward...let gravity take its place. It does work!!!

5. Plenty of rest

6. Pillows propped up in bed and pillow for under your legs. This helps with comfort and sleep ( i didnt do this for the first 2 days and was really uncomfortable)

7. Accept help....a must!

8. Comfy bed equals comfy sleep which results in feeling slightly better day by day.

9. Before you go for you op just make sure you have your home organised and clean sheets.

10. You may feel weepy and its allowed.

11. If you dont feel right down below as in discharge or odour....dont feel embarrassed....phone your dr.

12. Most importantly DO NOT LIFT OR TRY TO LIFT...a nurse told me she did 3 weeks after her op and she prolasped. Frightened the life out of me and my hubby....im 4 weeks and have started doing the dish washer, laundry (not carrying) light cleaning and cooking.

Hope this helps xxxxx

[Windancer05]

Sorry another question....is there anything you can do to prevent an uti? Or is it a case of you can only treat it once it happens?

hx

[zzmn]

Just drink plenty of water before you go in and also whilst in hospital....i drank sparkling water...only because i can drink of bottle in one as opposed to flat water. If you do get a UTI...it will most likely be in hospital after they remove the catheter....after catheter is removed go too the loo with assisted help...and just sit there....even if you are there an hr...just sit and let your wee naturally come out (it will come out drip by drip so dont worry)....it will be slightly painful at first but this will ease and drink water again....as this flushes everything out.....this is what i did and it worked for me because i was worried about UTI. If you do get a UTI it will be in hospital....tell them and they will treat it straight away with anti-biotics. Hope this helps xxxx

[Windancer05 in reply to zzmn]

Thank you so much, hx

[Alicepirate]

Quite unusual no to do it keyhole unless womb is really big adenomyosis or really big fibroids? what it was the reason on they can,t do it keyhole. Also I would ask if gyne is bsge registered so qualified to remove endo from everywhere. Even if endo is bad it is still normally done keyhole least chance of adhesions. If you look on the endometriosis site on healthunlocked lots more about endo. Will help with more questions, from people that I know hysterectomy is meantioned pretty early on but there may be more options so ask as much as you can write it in a letter if you forget at appointment be totally sure before such a big op.

[Windancer05 in reply to Alicepirate]

Hello,

My fibroids are fairly big. I was rushed into hospital in early July with an infection which the suspected was caused by a disintegrating fibroid. I'm going to ask for another appointment as I was shelled shocked at my last one. In April I was deciding if I wanted embolisation and now I'm due a full hysterectomy. I'll look on the endo page and make sure I ask as many questions as I can. Really appreciate everyone's response. Thank you

hx

[Alicepirate]

Sorry to hear you've been so ill I would really try every option you can before hysterectomy. Hysterectomy often seems to be mentioned very early and it doesn't get rid of endo, really take your time deciding , obviously it might be totally the right option for you but then at least you can have the op with total confidence Good luck

[zzmn]

Windancer...i was offered embolisation inwhich i was seriously contemplating until my gynae said that it only lasts for a few months and i would be awake throughout procedure which she said only takes 40 seconds. And all i could think of was...do i want to be going in every few months for 40 seconds of pain which would to me feel like 5 mins. And also it would be an on going issue. My hysterectomy wasnt taken lightly....i spoke with my gynae....and after 4/5 years of constant periods which wasnt conducive to my marriage it was suggested this would be the best option for me. As explained i had endometriosis at the age of 25 and because of the amount size etc and the fact the fibroids had attached to my organs i had no option but to have the incision. My fibroids have never grown back. Talk to your gynae hunny...there are different hysterectomy options (keyhole, incision, vagina) but there is a reason to why they do the different procedures. Which ever route you go down hunny once recovered you will fine and painfree. Here if you need to chat xxx hugs xxxx

[Windancer05 in reply to zzmn]

You are an angel....my consultant is in Wueen Charlotte's and holds an endrometriosos clinic once a week, xxx

[Windancer05 in reply to Windancer05]

I meant Queen Charlotte's....😕