I just wondered if anyone else feels so humiliated, degraded and fed up of being treated like cattle by nurses and doctors? I've had endo for over ten years (I'm 26) and after a couple of years of being treated like a lunatic by about five different doctors, I finally made a private appointment to see a specialist, who treated me like a human, with respect, and performed a laparoscopy to remove endo almost straight away (which my parents extremely kindly helped me with financially as I had no option other than to have it done privately, because no other doctor believed my symptoms). I had the most amazing year of feeling well and happy and pain free. When it came back, I went to see her again and she said as I have known endo she could do the op on the NHS (she is one of the leading specialists in the area, so I only want her to do it, plus I massively trust her). I agreed because it's a lot of money plus I needed two MRI scans this time, and I am certainly not a snob, but every single thing has been a fight. I am so, so poorly, and exhausted, and everything just seems too much I.e. I have endo on my diaphragm so she specifically asked for me to have pelvic and diaphragm MRI scans.... they had forgotten to refer me for MRI scans in the first place, then when I got there finally they only had instructions to scan my pelvis. It was literally only because I broke down crying with exasperation and exhaustion that they scanned my diaphragm. And that was just one in a long list of things that I've had to query/ chase/ ask about....
Up until Friday, I was nervous about the op because it's not pleasant, despite the amazing results. But now I am utterly, utterly petrified and angry - I had my pre op assessment on Friday and how they treated me has just left me so upset I just don't want to go near the place. The nurse treated me like an imbecile. It was dirty. I felt so humiliated, she didn't believe anything I said - I had to justify everything - why I take strong anti nausea meds normally cancer patients have, because I have such severe nausea, the tiniest movement like reaching over for a glass of water can cause me to vomit sometimes. I had checked that I had 'unexplained weight loss' on my questionnaire, so I was interrogated as to why I couldn't explain why I had lost weight (over a stone and a half since the endo symptoms started again). Then she asked me to open my mouth, and then made such a big deal that I couldn't open it further, and measured my open mouth with a measuring tape??? I just felt so degraded. The nurse who took my blood didn't speak to me, look at me, or tell me when the needle was going in. She literally just stuck the needle in. I've had a lot of blood taken, they always say 'just a sharp scratch!'??? The arm rest was filthy, it had grease from other people's skin on it. I won't go on, but this is just a couple of things that happened.
Anyway I came out crying (and in a lot of pain) and now I am so terrified about being under their care in this hospital. I'm going to be completely vulnerable and I just think they will have no respect for my dignity or how I might be feeling. Has anyone else had similar experiences or just feel sick at the thought having to go back to hospital after the attitudes of staff? I have now gone from worried to utterly, utterly terrified. And not about the operation, just about being in that hospital. The op is on Tuesday and I am beside myself.
Any words of reassurance or similar stories much appreciated, thanks xxxxx
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Flynn_Maverick
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Which hospital are you under? Sounds like you need a formal complaint - PALS enquiry at that hospital. You could ask a friend or your parents to help with the application, if it's too traumatic for you. I'm sorry to hear of your experience - it's ridiculous why our journey has to be so tortuous and such hard work. All the best to you
Hi thanks for your reply, it's Oxford's John Radcliffe... I'll see how they treat me tomorrow morning but I'm so, so worried that it will be the same as Friday. If it's as bad, I will have to say something and obviously never go back there for future ops. I agree, it just gets too exhausting sometimes, I don't understand why such a common disease isn't dealt with better.... Anyway thanks again for your reply, I appreciate it. All the best, Kelly.
Hope you ok sounds really awful. I was an nhs patient in a private hospital and had awful experience too but op was fine as consultant was brilliant I had no pre op appointment in the end really as first pre op appointment I had nurse just said she didn't know or ask the pharmacist about all the questions . I had to do a low residue diet leading up to lap my consultant had told me a few months before and nurse just told me why ??? And to ask a pharmacist about it she didn't know ???? And consultant had told me to do enemas the night before and in the morning before I went if I could , the enemas I got prescribed were massive and I had no idea and again the nurse just to.d me to ask the pharmacist as she didn't know why I would need to do them ???i also told her my health had got a lot worse and I had lost weight and was bleeding a lot and a lot of brown blood since seeing the consultant and she just cut me off wrote nothing down and told me to say on day ???i had had a fall off a ladder the month before and bad concussion told her this she again cut off she wrote nothing down then asked if I'd had any falls 2 minutes later I said yes she said but did you faint I said no ladder slipped so she said she wouldn't write it down ?????? I asked if it was diagnostic or would they remove endo if they found it recovery times ??? She just said she didn't know but I would definitely be out the same day ??? Anyway also she only did a blood test no Mrsa no weight , No urine test I was given no lap paperwork just you can eat up until 5 hours before op but didn't know again when I said about eating after enema ???? No questions about tablets I'm on or mouth opening if I ok with General anaethetic ????? Very weird took like 15 minutes I had a 45 minute appointment she kept asking if I had anymore questions while she kept getting up to let me out and but everything I asked she literally said she didn't know like I was stupid and needy
. I left like you feeling awful and annoyed that I didn't stand up for myself properly but like you you just don't expect it from someone in a caring position. I tried to contact PALS but because it private they couldn't help had to contact the NHS bookings at the private hospital to complain. I emailed them a list of questions as didn't want to complain until after op but no answer . So in the end op was cancelled as I actually had a bad jaw problem from fall and couldn't open mouth fully and muscles got worse from stress of all this. Eventually had op month later pre op was a phone call the day before was the same woman who still didn't know ??????? Asked about enemas again as had actually asked GP who told me I needed to ask hospital again she said you're not having a colonoscopy you know😡😡😳 I explained again consultant had said I needed to do it she just got annoyed and said she didn't have my notes and didn't know, so I said can she ring back when she did. Six o'clock that night the night before op Dr from hospital rang and explained enema 😡😡😡😡 awful
But to make you feel better op has gone well and am nearly recovered now i think best advice take someone with you and try not to take anything personally easier said than done and politely insist stuff done right go with your instincts and take time making decisions it your body.
ALso now I always say I suffer with bad anxiety right at the beginning of appointments so they act slightly better 🤔🤔was speaking to my sister about this and she was saying I speak very quickly which some people see as aggressive and anxious so I try to be conscious of this so try to be really aware of how you're coming across 💗💗💗 obviously this really hard when you in pain and stuff but has really helped me . So I get dealt with better hopefully anyway but remember be super strong even though is sounds a bit stupid I try to find something funny always however awful I feel or think of a really nice cake 😂💗💗 and take someone easy going , cheery and caring with you 💟💟💟 maybe take wipes and blanket to sit on and pillow stuff sure will be absolutely fine but the more worrys you can take control over the better , good luck. 💗💗
I gonna make complaint bout my pre op nurse now op over with though would hate to think any nhs patient having the same as sure the private patients wouldn't get treated like that.
Hi, thank you for your reply and I'm sorry you have had such a bad experience too. This is another thing that has really, really upset me, having to do an enema. It just adds to the humiliation and I've never had to do one before? I was told by the pre op nurse that it is in case the surgeon punctures my bowel?? I'm not quite sure how she would manage that, as she is only using laser treatment. Anyway that has massively upset me too, even more so because it's pointless, I can't believe I can't even be trusted to go to the toilet by myself before the op! Also it's so bad that you didn't get a proper pre op. I wonder if the private hospital thought you had been told everything by the NHS hospital, when in fact neither had communicated anything with you? I'm sorry to hear your experience too. My parents and partner are going in with me, and as I know the drill I will be discharging myself as soon as is safe to do so. There's no way I am staying in that place longer than is necessary for my safety. Thanks for your message and I hope your recovery continues to go well - once you have recovered you will probably feel amazing - I know I did last time! All the best xx
Hi, preassessment is usually very brisk - they have a lot to get through; though I agree some conversation from the nurse taking your blood would have been nice. As for the 'interrogation' they need to ask you in depth questions as they have to assess any risks and concurrent medical conditions etc - you simply won't get this in a private setting because essentially you are paying for the treatment and it's not having to be assessed on urgency.
From my experience preassessment nurses bear no reflection on the care I've had on gynae ward.
I wouldn't be terrified - they will look after you. However it won't be like a private setting - for me private was like a hotel room and treated like a princess - which was lovely however they were limited as to what they could do with severe Endo as private hosp doesn't have intensive care etc. - I had to have a later op on nhs for appropriate treatment. Personally I was happier to accept 3* conditions that got the job done than pay through the nose for 5* to not have my Endo dealt with.
In hospital the nurses will be for the most part kind and very helpful, you'll get the odd one who's a ------ (fill in as appropriate) but just try and negotiate around it. They will not muck around and will want to get you mobile within 24hrs of the op. If your surgery is major they'll help you with washing and what not. Expect that you may not get an instantaneous response with the buzzer and the food will be standard. Expect that with a communal shower you might have to deal with other people's hair on the shower floor if they're in before you - bring flip flops. It won't be pristine but neither will it be dirty. Just try and bear in mind you are getting the op for free in a service with better facilities to treat you than a private setting with advanced disease.
Thanks very much for your reply, it's reassuring that they may have more capacity to treat severe endo than a small private hospital, although as I have had MRI scans I know that (very fortunately) I don't have severe endo. I'm not worried about it not being hotel standard service, as you are too drugged up to care! I'm just so worried about being treated with no respect or dignity when I'll be very vulnerable, i.e. Very groggy from the anaesthetic. Anyway, it will be over soon, but it's just made what should be a nervous few days utterly unbearable for myself and family.
Hey, the severity of your Endo won't necessarily show on an mri, only things like nodules/extent of any penetration to bowel wall etc will; so is usually used as a way of assessing what way to do surgery if more serious disease suspected. They'll only know when they get in there to have a look what grade you are.
I know it's incredibly frightening and stressful, your nerves are all over the place in the lead up to surgery, particularly if you don't know what to expect.
I would try and put the preassessment out of your mind, as its completely separate to gynae ward. Just try and focus on preparing yourself for the surgery and what you need for after when you get home. If anyone treats you badly you have grounds for complaint, I haven't read much about people having major difficulty in hospital so that bodes well - just the usual didn't get to speak to the doc after or can't remember what said - when doc comes round immediately text the info to a friend or note down 😉
It will be only a few days and then all over. I promise it won't be as bad as you'll have built up in your mind, for me there have always been a few staff I've really loved that have helped me through and the ladies on the ward will give you good support too.
Good luck for the op, hope it goes well for you and you have a better experience than preassessment x
Thanks for your message, things were a bit chaotic on the morning but the anaesthetist and the nurse who looked after me after the op were both extremely kind, and the ward was a hundred times cleaner than the clinic. But a lot of what the pre op nurse told me would happen was still nonsense. Just grateful it's over and can get on with recovery. Thanks again.
No probs, really glad it went well for you and you had a 'good' experience, as good as surgery can be eh?! Pre-op is always a nuisance and staff are about as interested in being there as you do! At least you know the ward is better now. Feel better soon x
Also just read you're having an enema? Do you just mean the bowel prep? Any decent specialist surgeon will use this. Just going to the bathroom prior to op will not clear your bowel. Perforating the bowel is a serious risk and it's better if it's as clean as possible just incase. Also you will find your recovery better if they do bowel prep, I have bee given iv fluids night before too which also give a better recovery - you aren't having to worry about severe constipation when your tummy is really sore after surgery. (They may need to remove Endo from the bowel exterior and understandably the organ won't take kindly to this so likely to act up post op).
If bowel prep you just drink about a pint of the stuff, wait a bit and whoosh, pretty straightforward just be near the loo!!
The enema itself actually was fine so don't worry at all about it. I was unsure if I needed to do it til the very last minute and had no instruction which made mine tricky but I managed it myself discreetly at home and one in hospital in morning.
All my gyne care has been at the private hospital so the pre op nurse had no excuse she was just dire.
The enemas are useful also I think so you don't get constipated after op as you are more than fully empty when you have op if you know what I mean . I had in the end endo cut from bowel and rectum so was glad enema done so all could be done at same time. Had endo cut from near the bladder and because of no urine test at pre op before lap I had to go back to hospital day after lap for tests as had bladder pains before op and had no idea if I had urine infection or just general post op pain. Annoying 😡😡😡
Anyway good luck for tomorrow try to sleep well ,most place in uk I think it going to rain so you not missing lovely weather , glad you have lovely support. 💗💗💗💗
They found I also had adenomyosis so I advised to have hysterectomy I only 41 already have kids but really not sure what to do. Going to see if endo removal has changed anything and hopefully and I can hang in there for a bit 🤔🤔🤔🤔
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