Post op / devastated 😢

[LolaLo3]

Hey everyone ...

I had my laparoscopy and cystoscopy last week, I’ve had plenty of rest this week physically I feel ok I get tired most days keep thinking I will get stronger every day.

I was under for around 3 hours when I first got wheeled down I was so nervous but the anthesis was lovely she kept talking to me the whole time next thing I knew I woke up in recovery as I woke up I had so much pain down my right side and my throat was like cutting glass I got such a fright when I woke up I never knew where I was , I started pancaking and crying next thing all these doctors appeared which made me more anxious one of them held my hand the other was holding my other hand trying to calm me down when I came around n felt ok I was mortified... I then got taken to the surgical ward as they had no bed in the ward I was supposed to be in.. once I was settled in ward a nurse came and spoke to me to say my surgeon will come and speak to you in the morning.

Next morning right enough my surgeon came and spoke to me he basically said to me that I had stage 4 endometriosis was pretty much all over my abdomen they found endo on my liver , diaphragm, my right ovary was covered in endo and also cyts , my Bowel was attached to my left ovary which also covered in endo I Jus couldn’t believe it I was in so much shock he then said I would need a major operation but it was far too dangerous to do anything and they had took pictures , I then asked so what happen’s now.. I’ve to have a MRI then my surgeon and a bowel surgeon and my endometriosis surgeon will discuss the best plan when they receive my mri results .. only positive I don’t have any on my bladder.. it’s all starting to sink in now I have so many questions to ask.

I was in hospital 3 days wasn’t the best experience but was glad to be home to rest,

I have an appointment with my endo specialist/surgeon first week in may so till then all I can do is rest up I am going to write down all the questions I have and hopefully I will get some answers but till then I’ve to keep taking my pain meds and rest...

I jus feel absolutely devastated I’ve had my phone most of the time as I jus want to be myself but now starting to think it’s not a good idea jus feel soo low and emotional I’ve never cried so much for a long time 😢

Sorry for the long post 😊

[LolaLo3]

*phone off most of the time

[Nix123]

Sorry to hear about your experience. I felt very weepy and emotional after my lap - mine op wasn’t as bad as yours but I do think the general anaesthetic can make you feel very low. Took a good few weeks to get my mood back to normal. I also had all these emotions going through me because I’d finally got a diagnosis after several years in pain & nobody believing me! So what you are experiencing is perfectly normal. Take it a day at a time and from a positive point of view at least they have diagnosed you and you can now get on with the treatment. It’s easy to shut yourself off at times like this but try and tell people how you feel - it wasn’t until I told friend how I felt after the anaesthetic that she said she has felt the same and it was quite normal to feel very depressed! Take care xxx

[Hidden]

I am really sorry you had such an awful time. It is not easy to cope with a frightening experience like this and you've then got the news of the disease on top of that, so it's no wonder you feel the way you do. I came round from my first lap to be told that my endo was severe (the consultant was surprised but I wasn't) and that I needed a hysterectomy and oophorectomy and that the surgery wouldn't have done anything to reduce my pain. I then had complications after that surgery and ended up in A&E where internal bleeding was dismissed as gas pain and left untreated.

It took me a long time to recover from what happened in those 24 hours, and I was seeing stories of people shaking off a diagnostic lap and being back at work after a week, when I was still in so much pain that I could barely walk. Things will get better but it will take time. It's OK to not want to talk to people right now and to take some time to just process it yourself but if you feel things are starting to get on top of you, it might be a good idea to see your GP. The endo helpline might also be worth considering. Take care. x.

[Emmyeve]

Hi Hun, the anaesthetic can definitely make you feel all sorts of emotions and also, when messing around with our hormonal equipment 😄 it can definitely make us emotional. All I can say to you is both my sister and I have stage 4 endo. She has a lot of adhesions too. My recent lap half of my bowel was stuck to my womb and I had a 13cm endometrioma (cyst) on right ovary, 6cm on left also. And endo excised wide spread all over abdomen. I think my endo even though was wide spread, was not as bad as my sisters because I follow a strict endo diet. I think my cyst and endo will have grown before I switched to the endo diet and made alterations to my lifestyle. No fragrances, no toxins in home cleaning and bathing. Cut down stress. Plenty of gentle exercise but the diet is the most important. No wheat, gluten, dairy, sugar, and reduce red meat. Endo symptoms and endo bloat completely disappeared for me when following diet and skin and hair so much stronger. I know how frightening it can be but in a few years time it will just be something you live with and are used to coping with. Try to work with your body rather than hate it like some endo sufferers do. Remember your body is always trying to fight for you and work with you. And try to think how much worse it could be, I was so worried after my last op that I’d have ovarian cancer and when they said it wasn’t, suddenly my situation didn’t feel so bad, they can do marvellous things now. For example my ovary was repaired rather than removed!! And make sure you are seeing a BSGE accredited surgeon as a general gyny is NOT allowed to operate on you with that diagnosis. Xxx

[LolaLo3 in reply to Emmyeve]

Thank you all for your reply’s

I have been told it will be a bowel surgeon and my endo specialist who is also a surgeon I hear best one in Scotland, that why they couldn’t do anything apart from takin pics when I got my lap last week, I have been looking up for endo diet’s as I’m willing to try anything , but also jus want my surgery to start fresh after..

I think I’m gonna make an app with my doctor if I can’t shift how emotional I feel maybe it would be best to speak with my doctor .. Xx

[KEndo16]

Hi, hope you’re feeling brighter more often. Take those good moments and enjoy them, when the mood descends, which it will, know that it will be short lived. Anaesthetic can devastate your system. I’ve had four laps and each time I think the mental recovery takes longer than the physical one. And never be mortified at having a reaction to an anaesthetic, the staff are used to it. You’re in a good place as you’ve got your appointment booked in May, the MRI waiting list place and future surgery to focus on. Most of all, you have photos of your diagnosis (get copies of these if you can). A diagnosis can sound devastating, but over time you might meet people who are still awaiting a diagnosis, which can be a waiting game that cuts to the bone.

Time time to recover, do what makes you distracted from any worry or pain. Get to know what you like again. Make the most of people near to you who offer help. Use their strength to recover. And when you’re physically able to the best advice I’ve followed is to get up and start exercising so you’re fitter and stronger for your next surgery. Each lap I’ve had I’ve got fitter and it does make it easier in recovery.

Stay well. X

[LolaLo3 in reply to KEndo16]

What lovely reply’s I’m getting bk im so glad I can express how I feel on here as everyone knows what we’re alll going through , it’s jus crazy how the anaesthetic can do that to our body’s! I’m defo willing to try anything for a better recovery , I do think mentally I’m worse than the physical side of it all... but I suppose it all takes time esp the news I’ve had I Jus can’t stop thinking about it all! The waiting game is horrible, I am glad I got my diagnosis and things are moving with appointments/scan’s etc xx