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Endometriosis UK
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Getting scared for OP that is going to happen 9th May!! Full hysterectomy for severe Endo.

Hi, just after some positive feedback re my operation that since waiting nearly a year have finally been given a date today 😱 9th May! Having full pelvic clearance along with adhesions removed from everywhere incl bowel etc (possible Stoma bad which frightens me but hopefully only temporary). Just wondered how long for the hospital stay and approx recovery for this kinda thing?  

Thanks

Leanne X

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Hi Leanne

Just had total abdominal hysterectomy with bowel resection on 8th March. Ended up with stoma bag which I am still trying to come to terms with but I have excellent support from the stoma nurse. I stayed in hospital for about 10days until I was able to mobilise well and confident enough on what to do with the stoma. I was told reversal could take between 3-6 months, recovery time will be as long as it takes I suppose possible up to a year as I have to recover from my hysterectomy then the reversal

If you are possibly having a stoma bag would be good idea to actually meet up with the stoma nurse, I did not get the chance to meet them pre-op and when I met her after my surgery the nurse said she could have done with seeing me so she could have discussed the stoma and assess which site it will be placed and discuss practicalities of having one. 

Wishing you all the best x

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I haven't had a hysterectomy yet but hoping to discuss that with my consultant next month as my next step. But I did have a bowel resection about 8 years ago and had an iliostomy and a colostomy for a while. Probably about a year in full till they did the reversal. Just wanted to give you positive feedback that it is ok! It may be a but if a shock at first but if you've got good stoma nurses and a good sense of humour you will be fine! I actually considered keeping my bag permanently as j got so use to it and it had released many of my symptoms so well. But the reversal went fine and despite some interesting scars I've never looked back. Good luck. You'll be fine x

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Hi Leanne, I had total hysterectomy, BSO and excision on 3rd March. Was initially told there was a chance I would need a stoma but didn't in the end. I was in hospital for 5 days as had internal bleed after surgery. 

I'm doing well physically but emotionally not so good, but I think once I start on hrt that may improve, along with sleeping.

Are you with a general gynaecologist or BSGE specialist?

Ps good luck

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Hi Jean, I'm glad you finally got your op done but sorry emotionally it's difficult 😔 I am with a BSGE specialist. How many weeks did the doctor sign u off for? X

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I was initially signed off for 6 weeks but have now been signed off till end of May, as I'm having problems with bladder, which is causing a lot of pain. I'm waiting for tests to hopefully find out what's wrong.

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Hi Leanne, I had my full abdominal pelvic clearance last week on Monday. I was discharged on Thursday and have been home for coming up to a week. I feel ok overall. No real pain, just a numb feeling in the area and a weak feeling (kinda like when you are recovering from flu and haven't got your third gear back yet). Main thing is to be careful of lifting, I am moving around fine but pulling or lifting really feels wrong. I have chosen not to start my hrt yet (I am 43) as I want to deal with one thing at a time and I have not had any symptoms as yet. I had lots of endo around my ovary which meant I had extensive bowel adhesion's removed. I did not need a stoma but the only time I feel any real pain is just before I go to the loo but it passes immediately after I have been to the toilet. Lots of porrige and fruit is helping. Look after yourself over the next few weeks - I sometimes think the waiting is the worst part so try to relax in whatever way works for you. Take Care Kathy

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Hi Kathy, yes the waiting is definitely the worst 😔 Glad you got yours done 👍 Where in the country are u? I will be going to Queens romford. I am dubious about the hrt when will u start on that? Did you have to wait long for your op? 

Leanne x

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Hi Leane, l am in Birmingham and had my op at the Birmingham Womens Hospital - the care l received was really good throughout. I tried my evorel patch last week as l was feeling pretty ok ( two weeks after my op). I felt really odd, a bit out it, pins and needles and it really interrupted my sleep. I also had some vaginal bleeding ( not much but its still scary) which nurses reassured me can happen two weeks in as the sutures start disssolving and any blood left after the op which pools at the top of the vagina finds its way out. So l decided it was all too much and took the patch off. I am going to try and get a bit more advise before starting again - l feel like after an operation like this your not in the best place to start experimenting with new drugs. Not much longer to wait - my consultant told me l needed the op in late Jan (l also had a abnormal CA125 level caused by a cyst but needed checking out - which probably meant l was fast tracked a little) and had the op mid April. Take Care Kathy

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Hi Leanne, I am currently waiting for the same surgery as u and same risks of stoma etc. Don't have my date yet but just wanted to wish u luck and say it's nice to hear positive feedback from the other ladies too! Xx

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I had to have endo removed from my bowel and ended up with a colostomy bag for months I was devastated but you just get used to it and get on with things. I'm having a bowel resection soon having to have a illeostomy for a year and I'm feeling alright about thingsxx

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