Just diagnosed and feel utterly at sea

Hi guys, I'll keep this short as no one needs the full tale of woe! I just need some advice on getting support from the right people, as I'm flailing at the moment.

I had a laproscopy on the 21st November, as a cyst had been found on my ovary and it was to be removed. Half an hour before surgery, my consultant tells me 'We think it might be endo, we're going to look for it, remove any we find, and fir a Mirena coil to stop it coming back. Is that ok?' I agreed as I was rather taken aback.

The surgery itself went smoothly and I was allowed home that night. I was told they did find 'pretty bad' endo, they removed it and the cyst. Physically I'm doing quite well, but mentally I'm all over the place.

They had a couple of months between me asking for the lap (I was sick of ultrasound after ultrasound and being thrown random pills that 'might help, maybe'), why did they only decide it was endo now? Why was that not considered beforehand? I suspect there was discussion before the day's surgeries and it was brought up then.

Also, I'm very upset about how the Mirena was handled. The only information that I was given about it was a leaflet left by my bedside when I was sleeping after my op. How was I meant to give informed consent?! I really struggled last week, as I felt I'd been implanted with something that I had no clue about. I'm going to keep it in, but it really should have been handled better.

I rang Endometriosis UK on the 22nd and they were excellent. I'd been released from hospital with zero information on what endo is and how to manage it, in 20 minutes they gave me a lot of support and information. Following their advice, I called the PALS office at my hospital and asked for my op report and for someone to actually go over what had happened.

My consultant rung me back and basically blurted a textbook at me, I understood none of it. She also came out with 'We took two cysts out' which I stopped her at and said 'Excuse me? No one told me that!' She thought someone had gone over the coil with me too, but I was very insistent that just asking 'Is it ok if we put one in?' and leaving a leaflet is NOT letting me give informed consent. I could have had it done later if I wanted!

The short of it is she thought things had been told to me and done which hadn't been, which leaves me in the lurch. She thought a follow up had been scheduled, which it hadn't, so she promised to get it sorted.

Today I rang PALS back as they hadn't got back to me about the report, and lo and behold, no follow up is sorted and no one got a report sorted either.

I'm really, really scared as to how little I've been kept up to date with what's going on with my own body. This diagnosis has been dropped on me with no context or support. Of course, I'm not feeling 100% right now and I'm not lucky enough to have a good support network around me. I really wish I didn't have to be fighting just to find out what was done to me?!

I could use some advice on how to proceed from here. I was told I could have a 'debrief' with my specialist, but I don't understand anything she's saying to me (no sarcasm, she's clearly far too smart to be able to 'dumb it down' for me). I've been pushing for five years to get taken seriously, and this should be a cause for celebration because now I know. I suspect that the fact I have a couple of minor mental issues has hindered me so far.

I don't want to make people's lives difficult (God knows NHS staff are under enough pressure when they already work so hard), but I really need to get them to understand that they can't just leave me like this. Also, I want to make sure this doesn't happen to anyone else. Does anyone have any ideas how to push for what I need without ruffling feathers? Thank you!

4 Replies

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  • I'm afraid ruffling feathers is what most of us have to do. But were you not given a discharge note? The surgeon is required to send a report to your GP because it is a legal requirement that your medical records are accurate and up to date. So the first thing to do is ring your GP practice to see if the report is in and request a copy. There may be a small charge but not a lot.

  • I actually did ring my GP surgery last week, and they had no idea what I was talking about...

  • I should ring again and spell it out for them...you had a lap on 21/11 and is the operative report in yet? If they act dumb again say something along the lines of 'so I have just had surgery that has apparently confirmed that I have bad endometriosis and clearly I need to know what is involved. The NHS requirement is that severe endo must only be dealt with in a specialist centre so I need the report of surgery in order to make plans for my ongoing treatment. Please may I ask again if you have the report yet?' Will pm you.

  • I was on the phone to PALS today and they said they'll have it sorted by tomorrow at the latest. If they don't (likely) I'll try this. Thanks!

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