Thinking of making a complaint...

[Katiefrog11]

Hi everyone, just looking for some advice. As some may know, I had my lap on the 2nd of August after pushing doctors to put me on the waiting list. I went down to theatres at around 18:50pm having waited around all day. To be honest, my problem isn't with the actual day surgery nurses/team - they were brilliant up until the point that I came around. So anyway, I have my surgery and I'm brought out of recovery back to the day surgery unit where I recover some more. It's around 8:30pm at this point (I think). I vaguely remember asking one of the nurses if anything bad been found on my lap. She said she wasn't sure and would come back to me when she'd had chance to read through the notes. So anyway, I think I slept for around an hour because I don't remember a lot. I was so sleepy and really not ready to go home in my opinion. Anyway, I was woken up around 9:30pm and told it was time to get dressed and at this point, I was still extremely sleepy but I could see the nurses wanted to go home so I dragged myself out of the bed and got dressed. Then the nurse came over who was discharging me, she gave me all my paperwork and explained that the coil had been fitted. I asked her if I had stitches in, she said no because surgical glue had been used (I later found out I have stitches). Anyway, this wasn't even the issue. I was still out of it and she gave me my discharge summary and told me that the follow up advice was to "see my GP in six months if my symptoms persisted". So there I am, thinking alright they didn't find anything because surely if they had, I'd been seeing the consultant again. I was way too sleepy and confused to ask questions and I just went along with it as I wanted to go home. Here's where it gets interesting and this is where my complaint lies:

the nurse helps me out to my boyfriend and my mum who is driving me home. My boyfriend asks me if I'm okay - he said I looked awful. I remember saying to him, yeah they didn't find anything wrong as we walked out to the car and he was really confused. So we get in the car and I'm really out of it. He reads my discharge summary and it says "mild endometriosis in POD found".

At this point, I burst into tears. No one had told me, no doctor had been to see me and I hadn't even been booked for a follow up. To be honest, I'm still in shock at the fact I've been left with no follow up/support/advice. I wasn't even told my diagnosis, I was just left to read it on a piece of paper.

I've got no idea if they treated any endo, as this was what I signed the consent form for - "diagnostic lap, treatment of endo and coil inseration". Anyway, my question is - do you guys think it's worth making a complaint? I'm literally seeing no more doctors now, no other treatment options have been explained and to be honest I don't really understand this condition (only from what I've read myself).

I understand it was late in the day when I woke up, but to not even have an outpatient follow up is devastating as I feel so alone and lost now. It's as though I've finally got my diagnosis but I've still been fobbed off.

Just want everyone's thoughts of this situation as I know some have you have previously said I should be seeing a specialist.

[Hidden]

I am so sorry to hear the way you have been treated. I am also very shocked that your surgeon did not come around to talk to you to tell what was found and done. I wasn't allowed to leave until I had spoken to my consultant- I am under a Fertility consultant. He found and removed endometriosis implants from my pouch of Douglas.

I didn't have much endo either but because of the location it caused me many issues within my menstrual cycle, chronic pain that no pain killers could prevent and infertility ( I did conceive after my lap but sadly I lost the pregnancy at 5 weeks- endo pain returned with Pregnancy not sure if it's linked but waiting to hear back from fertility consultant who is on holiday ATM) I had bowel issues too. These issues have died down since my Surgery.

Do you suffer menstrual abnormalities- ie painful heavy periods which affect daily activities, pain during sex , chronic pain that affects your quality of life and finally do you have bowel problems? If yes then the endometriosis needs to be treated and cannot be left.

I would definitely see your GP and get them to fight your corner. Failing that I would maybe not complain as but tell the hospital PALS of your symptoms and quality of life being affected and you need to discuss your concerns with the surgeon who did your surgery.

I have been advised to go gluten free and lactose free to help reduce the bowel pain associated with endo in the pouch of Douglas.

Good luck lovely I really hope you get answers and support xoxo

[Katiefrog11 in reply to Hidden]

Thanks for replying. I'm so sorry to hear about all of the issues related to your endo - it truly is a horrible disease.

I've got a lot of problems - pain during sex (we can't have sex anymore), chronic pain where I'm taking tramadol which doesn't even do much, passing huge clots and heavy bleeding alongside the bowel problems. It's genuinely controlling my life.

Thanks for your tips, I'll definitely have a look at them. Just feel like I need some support and a discussion of treatment options.

Take care x

[Hidden in reply to Katiefrog11]

That's awful. It is a crap disease to have. Mine also controlled my life but has improved since my lap. You cannot be made to live that way. The medical profession cannot ignore the level of pain and quality of life being affected by it. Good luck xoxo

[KerryKB]

I would be contacting the Consultant's office directly in the first instance! I think it's a terrible way to have been treated and you have an absolute right to be told from the horses mouth what was found and what treatment you need. I had my second lap last month and my consultant came to see me afterwards, briefly explained what was found and then said she'd call the next day to explain more fully when I was more alert and could understand better - which she did!

It may be that your consultant was unable to see you afterwards and was relying on the nurses passing on info, it could be a lack of communication between them or it could just be plain bad practice. Call his secretary, explain your concerns and give them the opportunity to call back. If they don't then I definitely think you're within your rights to make a complaint x

[Katiefrog11 in reply to KerryKB]

Thanks for replying. You're right, I'll get into contact with the secretary tomorrow. Just can't believe how badly I've been treated! I feel like I've been left to just deal with it!

[Tillyfloss]

hi. How are you feeling? Has your pain improved at all since your lap?

I can't believe they discharged you without telling you what they had done, I don't really think it being an evening operation should make any difference I came out of theatre at 2am and the surgeon was explaining to me by 7:30 am and came to go through it with my husband that evening. I would take the others advice and contact the secretary, leave a message if its not answered and say how confused are and you need an appointment asap for a full explanation. If you don't get a response within a week contact pals and complain, my friend did and had an hour and half with the surgeon explaining everything as she was getting nowhere.

I've been very lucky as the treatment I've had has been brilliant but I would a have no problem complaining if I wasn't happy with my care and discharging you without going through it is appalling.

as far as pain goes have you been seen by the pain team? They helped me manage my pain much better and I would recommend asking for a referral from your gp or consultant.

take care

xx

[Katiefrog11 in reply to Tillyfloss]

Thanks for replying.

I'm getting a lot of daily pain at the moment, and it's somehow worse since my lap. I'm hoping that just part of the recovery process/coil settling. I'm going to talk to the secretary tomorrow, I just need some support/help. There really is no excuse for not having a follow up appointment/conversation with the surgeon. It's very disheartening. I haven't been seen by the pain team but this is definitely something I want to pursue as I also have crohns and this makes me really difficult to take certain painkillers/regular painkillers.

Just wanting some support from the hospital I think! Thanks for your advice x

[Tillyfloss in reply to Katiefrog11]

hope they step up and give the support. Where do you live?

definitely worth asking to see your local pain team, I have a few medications i can't take and a rare sight condition that is affected by certain things to and there knowledge was invaluable 😊.

rest up and I hope you feel the benefit of surgery soon. Xx

[Myfanwy21]

Hey, I had such a similar experience and can't get over how shocked people are at what happened to you as I didn't really know how uncommon it must be to get no info after a lap.

I'm so sorry you've also had such a rubbish time with this. My lap in March was very similar, diagnostic and "see and treat", but with no coil afterwards. I didn't get to see my surgeon after my operation as I had popped to the toilet for 2 mins and she came round and couldn't wait for me (!), so went home with no idea what had happened, if there was any diagnosis, if they had treated anything, expected recovery time etc etc.

I rang the consultant's secretary the next day and apparently the surgeon had gone on leave and wouldn't be back for weeks, so I rang the ward to see if anyone could tell me anything at all but nobody had my notes. So I rang again the next day, and the next day, and still no idea what had happened during the hours that I spent unconscious in the hospital.. which was a very confusing, isolating and nasty feeling which almost made me feel violated as I just didn't know anything. Anyway, skip a few weeks of calling the hospital, and an appointment with a GP who said to me "I don't know why you are here, what is the problem?", I had basically given up. Nobody would tell me anything, and I couldn't understand why.

It took me 5 weeks to find out from my GP that indeed I did have widespread endometriosis and they had treated as much of it as they could. By this point I had been exercising again as I thought "well if something was wrong they would have told me by now", which obviously I shouldn't have been doing so soon and caused complications, making me miss my final year university exams (which I'm now in the middle of sitting!).

Since then there has been nothing from the hospital whatsoever. I'm still in daily pain, probably worse than before, and periods shut me off from the world for 4-6 days in agonising pain.

So I completely get how you must feel after receiving no support or information! I didn't even realise you could make complaints about this sort of thing, if I had known that I would have definitely done it so I would suggest you make a proper complaint to them in the strongest possible terms, and make them give you some help and support.

Wow that was long sorry haha! Hope you get something positive out of your complaint, and know you're not on your own x