Follow up appts at BSGE centre

I had a lap at a BSGE centre 2 weeks ago. Everything was fine, my recovery has been easy. They removed a small amount of endo from my bladder and drained a cyst on my left ovary, but the majority of my endo was left in place as I have very extensive disease on my bowel and the plan is to excise it all in one go and have a hyst and removal of ovaries at the same time.

I was told before the lap that I would need 3 months of zoladex before the hyst, and was left with the impression that I would be given this whilst in hospital and that the wait for the hyst would only be 3 months (as I had waited 6 months from referral for the first lap).

2 weeks on, I've got no follow up appointment. One of the specialist nurses was supposed to ring me a week after the surgery to see how I was getting on, but this didn't happen. I rang the hospital and left a message for them last week but still no reply. I've got no idea when I will be having the next surgery - the consultant said I couldn't have the zoladex until I have a surgery date as he didn't want to give me more than 3 months worth (as I've already had 5 months on it this year).

I know these centres are overwhelmed but really, are we supposed to be left to our own devices like this? Since I was referred in May, I had to kick up a stink with Pals to get an appointment in the first place, then kick up a stink again because I needed advice about my medications pre op and it took over a fortnight to actually speak to anyone at the hospital. I want to stay with this centre because I have confidence in the consultants but the rest of it is an utter nightmare. Ugh.

4 Replies

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  • Did you managed to get through to the consultant 's PA? They normally deal with follow ups. I heard one of the consultant at UCLH is on long term leave so they have a long waiting time. They really should at least give you some ideas on the next step.

    Hope you can get something sorted soon .

  • That's my next step - I know from experience that it always takes the endo nurses at least a week to respond to a message so I wanted to give them some time to answer before I started chasing seriously. In hindsight I should have guessed it would be a long wait - I waited 16 weeks from seeing the registrar to having this first surgery though because I was told from the outset that it would be multiple surgeries and most likely a hyst I assumed they would be more organised - they've basically known I would need the second surgery since July.

    I was just clinging to the hope that it would be soon - I am having to take cerazette for pain relief which is making my hair fall out and making me bleed constantly :/ and the cyst they drained wasn't there when they did the ultrasound back in July so I am very concerned that it will come back if I have a long wait for surgery. I've had a cyst rupture before and I really don't want to go there again.

    Back on the phone tomorrow!

  • If the bowel is involved they need to liaison with a consultant bowel surgeon, so that could take some time too. I had porstap3 injection at the same time as the diagnostic lap but my main operation was scheduled exactly 3 months later.

    The main thing is your consultant is an excellent surgeon and you will be sorted soon. All the best.

  • Hugs x sorry you are in so much pain. Keep chasing. It will happen.

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