Stage 4: I’m new here. Just after some... - Endometriosis UK

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Stage 4

Oldtyme profile image

I’m new here. Just after some advice really I had my surgery on the 18th November when talking to my consultant before the surgery having already been diagnosed the previous year he was talking to me as though I didn’t have it and I found him pretty rude to be honest, he said he would come and speak to me after the surgery but he never did. All I got was my discharge papers which does say what it he’s done but I couldn’t make it all out and that I need to see him in 6 weeks time and the endometriosis nurse in 6months. Is it normal for the consultant not to come and see you after surgery? It’s so frustrating it’s taken the best part of 10 years to get diagnosed and now I don’t know if they got it all and if my fertility is affected.

19 Replies

I’m sorry to hear this. My consultant didn’t come and speak to me either and I’ve been struggling to find out the full extent of my endo. My appointment has been pushed back and I still haven’t seen them and my lap was 3 months ago now. So, unfortunately I am still waiting for more information.

Oldtyme profile image
Oldtyme in reply to Pinkfairies

Wow I can’t believe you’ve been waiting 3 months. I still haven’t had my appointment through yet and if it’s anything like last time I have a feeling I will have to chase it up again. I hope you get your appointment soon. I thinks it’s terrible that they don’t speak to us after the surgery

Hi,I'm sorry to hear you have been left in the dark by your consultant.

I had a hysterectomy, both ovaries removed and endo removed. My Consultant didn't see me after my surgery either, I like you was told he'd see me after my op. My post-op follow up should be 3 months, I'm 11 weeks post-op and no appointment yet. I have chased up the appointment but was told there's delays and given no idea of when to expect an appointment.

It is so frustrating not knowing what has been done. I wasn't given a HRT prescription on discharge and was told to wait until I can discuss it with the consultant so I'm suffering with menopausal symptoms too.

I hope you get your appointment soon and hope you get some positive results xx

Oldtyme profile image
Oldtyme in reply to 77yellow

Oh my goodness I’m so sorry to hear that I really do hope you get your follow up soon. I can’t believe they are making you wait so long with all you have had done. I’m going to give it another week or so and chase my appointment up. The trouble is they completely missed me before and when I called and spoke to he’s PA she said to me where are you getting all of this from and I had to read my discharge papers out to her and her reply was oh yeah I don’t know how we missed that. So unfortunately I don’t hold out much hope because I think I will have the same issue. But fingers crossed you her something soon xx

77yellow profile image
77yellow in reply to Oldtyme

Thank you 😊 Yeah definitely chase it up, at least then you'll know that they've received the appointment request. I really hope you hear something soon xx

Gardenist profile image
Gardenist in reply to 77yellow

Wow I can't believe they have let you go 11 weeks without HRT. Can you go to your GP? I was sent home from the hospital with Oestrogel but then the GP has been really great at discussing and tweaking my HRT. I'm around 9 weeks post op and I'm just starting to feel more normal. I can't imagine having nothing to help. It's a massive shock to your body. Hope you get seen soon.

77yellow profile image
77yellow in reply to Gardenist

I have spoken to the GP about HRT but they have been reluctant to prescribe any as I had some complications post-op so they think the consultant would be best to advise on my HRT options. I have to admit that I didn't expect to be waiting this long for my post-op follow up. Hope you are recovering well from your op? xx

Gardenist profile image
Gardenist in reply to 77yellow

Thank you. Yes its not been too bad. Op 4 so I kind of know the drill this time. I had a hysterectomy 5 years ago and my ovaries went into shock so I have some idea of what you are experiencing and it was tough. This time ovaries out but the HRT has made everything so much easier. Hope you get yours sorted soon x

77yellow profile image
77yellow in reply to Gardenist

Thank you too. I hope your recovery continues to be good. I'll hopefully see the consultant soon and get started on HRT xx

Hello, I m sorry to hear that, I dont know why they delay things , i had my lap surgery on 10

I had to stay overnight so by 3 pm i am in ward , about like 5pm one of my consultant came ( also operated on me ) explain wgat they did how they did . And what are the further plans. Also next day morning my main surgeon came he explained politely and assure they will see how things go

I just meed to catch up again and again with my nurse so she manage the appointment

I would say try to keep ringing them / email the nurse may be that can helpful.

Take care

Oldtyme profile image
Oldtyme in reply to Sara110

I’m glad your surgeon spoke to you after. I feel like I’m in limbo at the moment. I will definitely keep chasing until I get some answers. Thank you! Xx

Sorry to hear you weren’t seen after. I can only imagine how frustrating it is.I saw my consultant on the day of my lap but I think it was only because I had to stay in so long after because I wasn’t feeling well otherwise I would have missed him. Your surgeon may have still been in theatre when you were discharged?

Only advice is to keep chasing until you get what you want. It shouldn’t have to be that way but unfortunately it is sometimes and it’s even harder at the moment with the Covid backlog. Fingers crossed for you!

Oldtyme profile image
Oldtyme in reply to EmaW

I’m glad you got to speak to your consultant. I think it’s the not knowing is driving me mad it’s taken such a long time to get here and we still have to wait. He might of been in surgery but I know he only had 2 of us that day and I was the first I wasn’t allowed home until 7pm and even then it was touch and go because my bladder wasn’t working so had to be catheterised to go home and back again first thing. I know he was in that day too because the nurse said he had popped in but again I didn’t see him. X

Have you checked with your GP what letter has been sent to them? This is where I've always get my information as it is typed so you can actually read it. I did see the consultant after my procedure but I always find it hard to recall information after a general anesthetic. My GP read all the info and histology out to me over the phone at my request and we were able to discuss it. I don't get a follow up this time which I think is really wrong after major surgery. The 6 week check I've found really helpful in the past as the recovery brings up lots of questions. I hope you get some answers soon.

Oldtyme profile image
Oldtyme in reply to Gardenist

I have spoken to my GP and all they have received is my discharge papers which is literally the same as they gave me. I’m struggling with a lot of pain too at the moment my lower left side I really don’t want to have to go to A&E again so I’m hoping the doctors can help as I’m over 2 weeks post op now I thought the pain would ease but at times it’s really bad. I’ve already had my bladder and bowels stop working plus a post op infection 😞 Im convinced its my ovary though. Hopefully it’s nothing and it will ease off. X

I hope you get some relief soon. I had to go back into hospital with an infectionthis time after 2 weeks and it really set me back. I had to take lots of CosmoCol (really good stuff) too as the pain from the lack of movement in my digestion was horrible. Once that settled things were much less uncomfortable. Your insides will have taken a real hit so be gentle with yourself and take as long as it needs to feel better. October was op 4 for me and each time I've felt way worse initially, worried about what have I done to myself, and then once I've healed up my quality of life has hugely improved. Hope it will be the same for you too 🤞

Oldtyme profile image
Oldtyme in reply to Gardenist

Oh wow op 4. I really feel for you I hope your doing well now. Cosmocol I’ve never heard of it but will have a look. My GP has signed me off until January so I will definitely be taking it easy. I think I naively thought that I would be ok within a couple of weeks but that’s definitely not the case. X

Gardenist profile image
Gardenist in reply to Oldtyme

It's a type of laxative I think 🤭 but really helped me as a lot of the pain was trapped gas. But it was so painful. Not glamorous! Ive got no lady insides left now so hopefully that will be the end of it. It's been a 20 year journey of ups and downs. Glad you have time off to heal. Look after yourself x

Oldtyme profile image
Oldtyme in reply to Gardenist

Ahh right it is probably similar to laxido which is what the GP has put me on it is helping it’s just the pain I need to go now. I wish you all the best and really hope everything goes well for you! Thank you x

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