Should I expect a face to face follow up after lap surgery?

[Bakewey]

on the 17th of May I had diagnostic lap surgery. When I came round, the constant that performed the op came and showed me some pictures and chatted to me v briefly. I cannot remember much of the conversation. I was given a discharge letter that listed many issues (stage 4 endo) and a list of things that couldn’t be done, e.g fitting a coil.

Since then, I have been called to the hospital for another MRI and after that a pre op assessment and have met with a bowel specialist as it has been suggested that I have a hysterectomy.

I have just returned from my holiday to find that I have been moved from the original consultant to the lead of the department.

I’m frustrated as after surgery, which I was told was purely diagnostic, I was signed off work for 4 weeks (and I needed all that time) as I was v poorly. Fast forward to now and I still do not understand why I needed so much time to recover nor what did they do (I know an old cyst burst during the procedure).

Should I have been seen by the original consultant after the surgery to discuss or is this not common practice?Is just a discharge letter the norm? I had no follow up /well-being checks after surgery- I simply keep being referred along a chain.

Not sure how to get the answers I’m looking for as when I’ve met with the wider team or the contacted the consultant’s secretary I’m told that the consultant will explain!!!

Any advice will be greatly appreciated..,

[Law94]

I had diagnostic lap in February and they found endo, I only found this out from my discharge notes as the surgeon didn’t even see me after surgery. I called his secretary and she explained I’d been referred to someone else and the wait was over a year, I then had an appointment come through for the 18th of August, and it was my follow up from my surgery in February, I finally got an explanation of what they found and what the next steps are. It’s awful because I felt abandoned for months not knowing what was wrong with me or what they were going to do next, unfortunately it seems to be normal practice :/ I hope you hear something soon, in between waiting I have had to attend A&E three times and my GP twice due to the severity of the pain, so I’d advise that if things are still bad. My GP also discussed my results from surgery and MRI best they could and that helped xx

[Bakewey in reply to Law94]

Goodness, it it not fair. I am sorry to read that you have a similar experience/ frustrating wait! I hope you now have a clear road map for your treatment and that you get a solution soon.

Me too, A&E is my go to when I am unable to walk / passing huge clots; however, my GP refuses to speak to me re anything endo related citing, ‘You are seeing an expert’’

I will follow your advice and contact the initial consult’s secretary again and ask her advice.

Thanks for taking the time to reply.

[Tangoandmax]

Hey, I’m not certain they are offered as standard - which is absolutely ridiculous.

I woke up to an explanation but like many others it’s hard to fully remember or ask questions when you’ve only just come round.

I contacted my consultants secretary two weeks post lap to question what was on my discharge notes, and she had the doctor call me (which I guess was an impromptu/unintentional follow up) to talk me through what was located/removed and what I should be doing regarding hormones from now on. I’m currently waiting for biopsy results but once I have those I’ll be arranging a subject access request for all information/images pertaining to the surgery so I can go through and keep record of all details myself.

[Bakewey in reply to Tangoandmax]

Great tip, I’m going to request subject access and book a private access request and go back and see the private consultant that explained my previous test results. The lack of clear is driving me insane!

I hope your biopsy results come back clear.

Wishing you a wonderful day.

[Simo7]

I’m so sorry that you’re diagnosed with this horrible disease. I’d go back to your GP and ask to be referred to a BSGE centre - they have extra training in endometriosis specialism. There’s information that a hysterectomy doesn’t cure endometriosis, though some women seem to have done ok with it and even my BSGE specialist keeps asking if I want it done despite my endo being outside of my womb! Gold standard treatment is cutting endo out (still uses the laser just a different technique I think, if done well it can help) In the mean time I’d do as suggested, call the secretary and ask for the Dr to call you. The prime thing with this disease is doing your own research and strongly advocating for yourself. There’s a good Facebook group called Endorevisited that have lots of information wishing you well xx

[Bakewey in reply to Simo7]

Thank you. Since following the advice given here ve managed to secure a face to face appointment on the 28th Aug - bit with the initial consultant as he has his reduced his hours, but with one that will finally be able to explain what was done during the initial operation - I cannot find the words to explain how happy this makes me.

I am using all these comments as a basis gif my questions for this day - I will make sure I find out where exactly the endo is and whether I can just have it removed rather than a total hysterectomy.

I’m on Facebook but I think I may need to open an account.

Thanks for sharing and I hope you are well.