Post hysterectomy experience wanted

Hi Musicmum 

I had different surgery so don’t have the relevant experience for you, but lots of other ladies have had this done and will hopefully be along to share with you. I’ll tag Bubbsy80  as she might be able to help.

Sarah xx

Hi Musicmum  

I had a abdominal full radical hysterectomy towards the end of January this year, and i am still healing now internally. 
I found in the first couple of weeks i had some dirty coloured discharge, however i had complications after my surgery so had a big set back with my recovery, and im not sure what was related to the hysterectomy and what was related to my complications unfortunately. (If you click on my name you can read my bio with all the details if you are interested) 

Its been approx 4 weeks since your op so you are definately still healing and should still be resting more than anything else, so id say listen to your body and even when you feel well enough to do stuff, you should still rest.  
On the days you feel you can do more, what sort of things are you doing? If its gentle walking then id say thats fine but if its strenuous stuff like housework etc id suggest you slow down with anything like that.  
You need to be so careful not to set yourself back in your recovery, trying to do too much too soon.  Internally you are still early stages of healing and need to let yourself heal slowly and properly. 
Painwise i still get discomfort now and tightness around the scar and inside under the scar, again my body is still healing 14 weeks post op.  
I made sure when i could and when my body allowed, i got out for some gentle walking, short walks but making them a bit longer each week where possible.  I still am not fully carrying anything tol heavy and am trying to take it easy more than i was pre surgery.  But like i said earlier i had some major set backs so my recovery was very much all over the place.

Everyones recovery is different and it will always be good days and bad for a while but the good days will start to out weigh the bad eventually.  

Do you have a specialist nurse you can speak to regarding post op concerns? I found my specialist nurse very helpful when i had questions.  

Im not sure i have been much help but i wish you a good recovery and keep us posted on how you are getting on please ️

All the very best Kath Bubbsy80 

Thanks for helping out Kath! 

Sarah xx

That's been really helpful thank you. 

I've done some walking and when going anywhere which I feel would be to much or standing for long periods of time I use a wheelchair. I have a problem with my spine and I'm finding this quite painful atm when trying to do walking. The rest isn't kind to it as I struggle to sit or stand for long periods of time. 

I have done a little house work like dusting, sweeping the floor and cooked for the first time this week but maybe I shouldn't be doing that yet. 

The pain is largely inside and one part of my scar in particular hut I had issue with that (it kept opening) so it's behind the other parts x

The other thing to remember is that you have a lot of healing to do inside which you can’t see, so sometimes we think we’re further in in recovery than we perhaps are. You’ll still need to care care not to overdo things. 

Sarah xx

Thank you. I think I expected more after care. I feel like no one is checking everything is OK or if I'm fit to go back to work (in a few weeks).

It may be my anxiety but I worry so much about it all and if I'm ready, or if I'm under estimating things, or if at some point all the bits of this journey that I havnt processed will just hit me...

Hi Musicmum Im so sorry you have been left feeling like this, its really not fair and unfortunately you are not alone with experiencing little to non aftercare.  
I have to agree the aftercare for me was the same and felt non existent, they promised me they were just the end of the phone if i needed them and then when i did they let me down.  I left hospital with no details on post op care, exercises, timeframes etc.

 I finally found out from a friend in the hospital that i should have been assigned a specialist nurse who should be there for me, to answer my questions, ease my mind and look after me.  
I was totally unaware that i had a specialist nurse!
So i found out who she was and got her number and email address from my specialists secretary in the end, and from that point on i finally had some support and felt less in limbo.  

It is awful and traumatic when you feel just left, we are not medical professionals, we dont know what is normal and what isnt.
 I had to resort to google to try to help me understand my recovery process/timeframe etc. which also brings with it things you dont necessarily want to or need to know, which can be scary and make the anxiety worse.  I suggest dont google its can lead you down holes you dont need to be in.  
I finally found the macmillan websites and Jo’s cancer trust websites over the last month or so, which have helped me a lot. There are also medical professionals you can get advice from on this webpage if that helps you any?

I really hope you can find the support you need.  Start with getting the details of the specialist nurse, you will feel so much better im sure of it when you have a point of contact to talk to 

let me know how you get on and all the very best.  And im always here if i can help in anyway.  Im not the best advice giver…i do waffle on i know….but happy to chat

1. kath xx

Hi Musicmum 

Kath is right in saying that you should have a specialist nurse-called a CNS(cancer nurse specialist) who might also be called a key worker. Everyone with a cancer diagnosis should have been told who they are and have a contact number. They are usually your first point of contact with any queries or worries, so you should find out their details from your consultant/surgeon’s secretary and call them.

While I was going through treatment after my first diagnosis, my nurse phoned weekly to find out how I was and ask if I had any concerns. 

I do have to say that the lack of after care can be sadly quite common and we can feel left alone in a sort of state of limbo, which is scary, so your feelings of anxiety are completely natural. 

I had a bigger surgery than a hysterectomy, which was completely life changing, leaving me with two stomas, and had no after care to speak of. This was just when covid was kicking off, so that made it even more isolating for me. I had to learn fast as there was very little help for me after I left hospital. I had a stoma nurse visiting for a short time, but it was very difficult to get for example district nurses when I had a wound infection-they would say they were coming and simply not turn up.

My partner spoke to the local pharmacist, we bought what she recommended and basically made decisions ourselves on how to manage things-stopping antibiotics which were making me even sicker, and dealing with my infection as best we could. It was at times quite frightening. 

You can ask questions of the nurses here in the community by clicking on this link

Ask A Nurse

You should also be having post op appointments with your consultant to check on your physical progress, so I wonder if you’ve had your first appointment scheduled next? 

The first point of contact should be speaking to your specialist nurse-I’m astonished that you were not told who this was. They can be very helpful, and will answer questions and chase things up for you if needed. You don’t need to feel so alone with this after having surgery like this. They can also help get you further help, for example with counselling, should you feel you need it. 

It took me nearly a year after my operation, when I was in a very bad place with my mental health, to ask for this, and I wish I’d done it sooner as it really helped me and it was arranged by my specialist nurse. 

I’m sad to read how you’re feeling, but completely get it, and I hope you can access more support. Keep speaking with us here too if it helps you-we’re always ready to listen and try to support you, and we understand.

Sarah xx

Hi im new to the group. 

I had surgery on the 10th May.  Still recovering but now i have to go through Radiotherapy and chemo. Apparently ive got stage 3c. Cant do much as u feel like your insides will fall out. Mother of 2 kids.