Recovering from major excision and hysterectomy

[Sarahjane1967]

I'm 12 days post-op from Stage 4 Endo. After false starts with a general gynae I found a team who are dealing with my IC, Endo and bowel symptoms with a specialist consultant for each. I'm very lucky - I was diagnosed 12 months ago from by a (different) doctor exploring a routine blood test.... I've been back and forth with symptoms for 18 years!!

My question is - post surgery - what are your experiences of starting to feel 'better'?

I had uterosacral ligaments which had glued themselves to my bowel removed, a hysterectomy, complete excision of endo, scar tissue etc. oh and my appendix removed because that was covered in endo too. I've kept my ovaries and my bowel didn't need re-secting thank god.

I've had a post op infection (on antibiotics) but I don't know how soon I should start to feel ok - I still feel like I have chronic period pain crossed with a Caesarian and that my insides might fall out at any minute! My bodily functions all hurt, I'm not sleeping too great either.

Am I expecting too much? I know we are all different, just feel a bit alone explaining how I feel to the men in my house (husband and 2 teenage sons - all very helpful!!)

Any advice?

[Tboag]

Hi, I'm sorry your still in pain, do you have strong enough pain relief,

12 days is a very short time and I'm sure you will start to recover soon, your body has been through a lot,

I'm waiting fir a hysterectomy myself, just been diagnosed with endo and adenomyosis,

did you have your overies removed?

Wish you well

Xxxx

[Sarahjane1967 in reply to Tboag]

Hi, thank you, I'm sure you're right, I'm so impatient!!

I kept my ovaries because one of my surgeons told me they should be saved in all cases if at all possible and mine were ok.

I'm in no rush to deal with the menopause after trying Prostap injections!

When is your operation, do you know?

[Tboag in reply to Sarahjane1967]

No date yet, but should be in the next 10 weeks, and yes my overies are staying too,

Xx

[Cmg1978]

Hi 12 days is very soon to be feeling better, you have to take each day as it comes and not expect too much of yourself it's still very early days. I had a hysterectomy when I was 29 and retained my ovaries, the first 2-3 weeks are the toughest but it does get better but you must give yourself time to recover and don't push yourself. I was the same I thought I should be feeling alot better than I actually was and felt bad for not being able to do much at all. I eventually had my ovaries removed as they were tangled and stuck down when I was 32. Hang in there lovely it will all get better it just takes time x

[Sarahjane1967 in reply to Cmg1978]

Thank you so much.... You're spot on! I feel like I should be able to do more, I've had 2 c-sections, but I guess they were 15+ years ago...I'm a bit more knackered now!!!

[Cmg1978]

It's a massive op and you've got the infection on top, everything needs time to heal and so do you. Don't feel guilty or bad about feeling ill. Mind you I'm brilliant at giving advice but I'm exactly the same and always think I should be better almost immediately after every surgery but in reality it's not going to happen I really need to learn to practice what I preach!!

Take care of yourself xx

[Sarahjane1967 in reply to Cmg1978]

Thank you so much xxx you too xx

[Jellybutt]

My dad (retired GP) says any surgery traumatising peritoneum & bowel takes a while to recover from. Body doesnt like it. Let alone all the bits they whipped out! Hope you are feeling a little bit better every day & take as long as you need to recover. Ive just had investigative lap confirmed Stage 4 endo, did some minor work, waiting in consultation to see whats next - expecting similar to you to deal with lots of bowel & bladder issues. I'd recommend Cougar Town - I signed up for free Amazon Prime 30 day trial - am now on season 3 - watching on ipad - funny US comedy with Courteney Cox about post 40 woman, friends, love & life - each episode 20 mins which I can just about cope with. And make sure all those men are running round after you and if they stop just start talking about all your women's organs & what they hacked out & the stitches/holes in your abdomen & that should get them running!!!!!

[Sarahjane1967 in reply to Jellybutt]

Thanks so much, that's reassuring, I think I'm just a bit shocked at it all atm!! Love Cougar Town...so funny. Have you seen when the men are left in charge of Stan the baby?! I might re- visit them to cheer myself up. I'm on Suits at the moment - it's very good too!

Thank you so much for replying, nice to feel we aren't alone.

Sounds like you will possibly end up going down the same route as me - are you seeing an endo/vowel/bladder specialist team? I recommend Bristol if you're not too far away . Do you have any children? Lots of love xx

[Jellybutt in reply to Sarahjane1967]

Hi Sarahjane, will check out Suits! I have a 7 yr old daughter through IVF (was unexplained but now I have had my diagnosis early stage endo was probably the cause although lap then was clear). IVF treatment was in Bristol funnily enough but my nearest specialist clinic is Cornwall, have an app there end of May. I have an older stepson too but he doesn't live here so not so helpful!!

Hope you are feeling a bit better now. I am feeling so much better than last week.

xx

[dk1136]

Hi sarah jane, im waiting on a hysterectomy aswell, please just rest and please dont push yourself too much, as women that is very hard it is in our nature to "get things done" i too am a very inpatient person but we need to put ourselves first in order to make a full recovery.

sending you hugs

x

[Sarahjane1967 in reply to dk1136]

Do you know when your op will be? Xx

[dk1136 in reply to Sarahjane1967]

No not yet, was told on 31st March it has to be done within 18weeks x

[Sarahjane1967 in reply to dk1136]

The waiting !!! Seems to go on and on! Xx