Hi so only hours to go before I have to get to hospital and final have a diagnostic lap to confirm what is causing all these pains. I'm pinning all my hopes on finally getting some answers and its been such a hectic week of finishing jobs at work I'm looking forward to a rest too!!
Feeling quite calm at the moment so hope I get some sleep and wake up feeling positive! I'm sure ill have a wobble at some point but just focousing on finding out exactly what's going on in my body rather than trying to guess!
Will update when I can , and thanks to all that sent kind wishes on my last post its nice to know whatever the news I will have support if needed on here so thanks xx
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lillyflower
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From experience with NHS, I would ask them to 'wait' until anaesthetic has totally worn off to tell you
what and if they find anything. The reason I say this is, after my lap and hysteroscopy, I vaguely remember some medical professional leaning over me as I came round and my vision was blurry and telling me the results of the lap and hysteroscopy and even showing me a picture of my inner pelvis and stomach showing endo and adhesion deposits they found. I can only remember her saying it was more extensive than they thought and me asking her on a level of 1 to 10 how bad it was and her saying 'quite high' 7 or 8, the rest I can't remember and I didn't get this confirmed by anyone else until I'd left the hospital and had to ask my Gp for more info! So just a bit of advice, ask them to wait until your fully round to tell you.
I'd agree whole heartedly as my experience has been similar. My surgeon came to me whilst under the influence of morphine and still drowsy from the anaesthetic and said to continue with current treatment (which was making me bleed) and said she'd see me in 3 months. By the time I came round, she'd gone home and I've had to go to my gp to try and resolve the bleeding who are reluctant to interfere with hospital treatment.
Hi thanks to you both and thanks for the advice hope they don't speak to me too soon after xx Sat waiting now and its snowing heavy! Hope I don't get snowed in x
Hi primrose, I can't believe I had to be here for 7.30 and no one has even said hello yet could have had more sleep! Good luck I'm having dye and hysteroctopy too ! Hope all goes well with you and see you on the other side of the op! X hugs to you x
Not impressed doctor doing op who's not the doc I'm under just spoke to me and I said aren't I having a hysteroctopy to he said you can if you want! What ?? Ok so he's doing all tests and explained my doc thinks its endo he said I might find something but quite often I don't find anything!! Oh god nothing like freaking me out!!
Good luck hope all goes well and you get some answers, always think its strange that you just get a quick run down of things when your drowsy. Not that I have had one yet still waiting on my 1st lap date. You think there could be a small typed up sheet with a bit if very basic info so you know what they saw & did so u have a ruff idea of recovery extra. I know its more work but it would take a clerk long to just do a simple report like when my husband has had an endoscopy its like 'saw this,biopsy taken of this, & just s tiny bit of info'.
I had an trans vaginal scan yesterday showed no cysts ( but only 5 days since period so no ovulation pain yet) & nothing else seen. Has anyone else had one n told they can't see anything abnormal & yet endometriosis has been found on lap. I'm sure I have seen before that it doesn't show up in any scan. Came out of scan feeling like a fraud & thinking maybe this is just in my head !
Anyway speedy recovery to you have your lap today x
Hi thanks, all my scans were clear but unless you have an endremetrial cyct then endo doesn't show. I'll let you know after lap if its diagnosed! That feeling like a fraud doesn't go away I'm always having days of doubting myself which is why the doctor has just made me worry. In the info sheet it says you will get report to take home but never heard of anyone actually getting one! So bored and tired now!
Good luck lillyflower!! You're completely right, I was diagnosed through emergency surgery for suspected appendicitis. My appendix was fine but everywhere was covered in endometriosis. I had a ultrasound scan exactly a month afterwards (it was booked before the surgery to see what was going on). My scan showed no endometriosis whatsoever! The DR kept repeating you don't have endometriosis, to which I was saying I've just had surgery because of it! I also have endometriomas on both ovaries. Endometriosis can ONLY be diagnosed through laparoscopy. It's unacceptable that the NHS still offer ultrasound scans as a method for diagnosis. It does not work!
Thanks for all the kind messages, Am home in bed went ok although feeling sore tired and emotional, is endometriosis and "grosely swollen fallopian tubes" which are completely blocked and lession connected between ovarie womb and rectum. Had some endo lazered off but will need op for tube removal. Will have 6-8 weeks till gyni appointment to discuss further and will get results of biopsy.
So its definately not in my head, he had pics and so I asked nurse to go over it again and she read through all notes and explained pics. Was very helpful and supportive when I couldn't stop crying. I'm having waves of pain and tears and really shakey but she assured me the anesthitic can make you very emotional too so hoping to get a good sleep and wake up feeling better. Xx
oh lilliflower so glad u finally have an answer now!
So pleased to hear it all went well and you are now back home recovering. I hope the recovery is quick for you.
Sorry to hear tho you are going to have to have another op to remove tube! Bless you. Must be a lot to take in, but nice to have some answers and prove to drs etc it not in your head!
That is great the nurse went back through it all with you.
Not surprised you feel tearful, emotional and tired and sore.
Wishing u a speedy recovery, enjoy the rest as much as you can. So pleased for you that you finally got some answers hope that you don't have to wait too long for the removal of your tube and the after recovery you notice some improvement in your day to day health. Thanks for letting us share your experience it helps to known there are others exactly like us and that we are real, our symptoms are very real and its not all in our heads.
ok wrote my message before i read the rest...so glad you got a diagnosis...my trans vaginal scan is in April then after that they will suggest laproscopy....you do feel like you're making it up at time...sometimes i even tell my self i'm doing it for attention ( I know its silly but there you go)...reading your post has really helped me to think i'm going the right away about it. Hope you get well soon and they fix the damn thing....
Hi well I am proof we know our bodies and I knew there was something wrong even though I found myself doubting it after each clear test or if I had a good day! I'm glad sharing my experience may help some of you. I'm feeling much better today less emotional and still sleepy but managed to get up ok and slowly more around to help get some of this gas out of my tummy. So I am concerned about having my tubes removed one is hydosapinx which means its full of water anyone had this? This was definately the shock I wasn't expecting but trying not to worry till I talk to docs.
I am glad you now finally have some answers, I am dreading my lap incase they find nothing and makes me look like I am making all of this up in my head, sounds so bad but I am really hoping they find something just so I know what it is and that I can actually finally get some help.
I am glad you are now getting sorted and have the peace of mind that it was not all in your head. Hopefully fingers crossed my lap will be within the next 4 weeks I cant wait.
Carry on and let us all know how you are and getting on x
You have just said exactly how I felt before my lap, I'm glad I've had it and now i know what I'm dealing with as soon as I woke I wanted to ask what was found! Anything? Although it was a bit of a shock I can now stop doubting myself. So if you have all the symptoms I'm sure they'll see something. I'm glad you have a date and I'm now on day 3 and am walking around much better still sore and drinking lots of peppermint tea to help with wind. Moving around helps get it out too. Hoping to have a nice bath later and feel more normal.
Good luck with your lap and let us know how you get on the help on here is what has helped me along the way as its so nice to talk to people who know how you feel. My husband is looking after me and is being great but I'm not sure he Realy understands how I feel.
I am glad you are now up and about and feeling a bit better.
I cannot wait to have my lap done, just so I hope I can have some answers and find out what is wrong.
With your husband, I think they try and be supportive and try and show they understand but deep down they dont understand, my partner is always getting frustrated that I am always complaining im ill we dont have sex anymore and I am on just a constant moan with housework, dont think he understands how painful just little things are to do.
Maybe when I have a diagnosis he may see more that there is actually something wrong and its not all in my head and things. x
Hi yes sounds just like my hubby! He is being lovely but no sex for several months he has made a few comments and I had to explain its not that I don't want it I just hurt too much. All I could say is I was hoping for a good day and now he knows the results he said he's missing sex but feels selfish saying it now but I think its important to be honest and am hoping to feel better soon as I do miss the closeness ! Just be kind to yourself and if you have a good day make the most of it, before my pain got worse a hot bath and painkillers helped me relax and enjoy a little x
As for housework I just did what I could on good days to keep ontop of it but don't over do it as that made me worse x mainly hovering and moping floor as just made pelvic pain worse. Quite often id do that then hot bath straight after to relax my tummy again and hotwaterbottle, seemed to help a lot.
I'm sure they try to understand but unless you have these constant pains they can only guess how bad you feel and how exhausting it is.
I hope you get your lap and some answers soon it definitely helps to have a diagnosis and know exactly what's going on x
I miss the closeness to, some nights we are fine and have no problems but its afterwards thats the problem, its nice doing it but like 5 minutes after I know its going to make me feel bad the day after.
Unfortunately I do not have a bath to relax in we only have a shower which sucks but we have spoken about getting a bath put in hopefully soon to try and help me relax a little bit better x
Sorry to butt in ladies! I didn't have a bath in my previous home but I do now so I totally understand that a shower does not relax you in the same way but I would suggest Radox shower gel and also if hot water bottles/wheat bags are too hot on those days where the heat makes you flustered try a TENS machine. It might reward you in the same way a soak in bath helps us x
Hi I definitely think a bath would help, but in the mean time try 2 hot water bottles or wheatie packs one on front and one on lower back so you are surrounded in heat and take painkillers before so they are kicking in after. It's hard to enjoy when you know the pain will come. I know others on here have suggested trying different positions or sometimes doing other things than penatrive. It's just finding out what works for you best and causes the least pain, I hope you find some relief and ways to manage it x I am happy with a cuddle right now but I know once I've recovered from this op this is going to be an issue again if the pain doesn't ease off. Fingers crossed for some good days and some big hugs on the bad days.
Hope you can plan that bath soon as I think it will really help you x
hi lilly glad you're feeling ok...its so weird hearing you all say things that are in my head...i thought it was wrong of me to want them to find something...but you just want to have something to say 'this is why i'm in pain'
It's not wrong to want to know why your in pain and although I'd hoped it maybe was something that would be easy to sort, I am still relieved to have an answer after nearly a year of tests that said I was fine. Although I had doubts there had to be a reason for all the aches and pains and limping etc.
I am feeling better and was told not to do any heavy lifting for about 7 days and not even a kettle the first 2 days so my hubbie is on coffee duty! I am due to be back to work Saturday so will be the 7th day. As I need to do wedding dress fittings which can be heavy I asked if that was ok and she said only of I felt ok so have got someone to come in and help just incase its too much. As its easter ill have Sunday and Monday off and should then be fine by Tuesday to get back to work. They told me to do as much as feels comfortable and to move around a bit not just lay in bed as helps move the wind . Felt a bit wobbly and light headed to start with and only up half day yesterday but getting around much better today. Sat on sofa all morning but nice to be up and had good sleep so feeling more awake today x feel free to ask anything if I can help I will x
@x_b_x I felt exactly the same before my lap, as you go on for so long with the docs saying its nothing serious etc etc, and even my last thoughts before going under was I bet they don't find anything, and to be honest I really did not want them to find endo, I wanted them to find something, something that they could've treated there and then and that be an end to it all.
@lilyflower I have not been told about any recovery times after my lap. I am day 7 now, and Sunday was my first proper outing and I had a look around the shops, just to do something I managed about 40mins and was in a lot of pain, came home and went back to bed for the afternoon. Yesterday I went food shopping, not because I needed to but just again to get moving, I didn't lift anything etc but after nearly an hour of being on my feet I had the most awful pains and had to find somewhere to sit down, but when I got home I didn't go back to bed so I suppose that was an improvement, it's driving me crazy, I've gone from doing so much and now I can't even walk my dogs - as I said I was given no advice for times etc or lifting, I think maybe they forgot to give me the after care sheets as I was pretty much thrown out as the recovery ward closed at 8pm, I only came out of theatre at 5.45pm and I was home at 8.20pm, feeling pretty rough. I had the lap done, ablation and was sterilised and each procedure says 7-10 days before resuming normal activities, everyone says just take it slow but it really is frustrating, and I cant imagine if I have the hysterectomy done as that will be a much longer recovery.
I've had my consultant appointment through already and it's for next week, never known the hosp to work so fast lol, but hoping for more answers then and can then make a decision.
Hi worth 71 I was told at my preop appointment about recovery times, what to expect and that a diagnostic lap should be about 7 days but if they do anything could be 1-2 weeks at least. So as you've had work done although on the outside I'm sure your looking good but inside your probably still healing! That's great that you managed to get out and doing a little gradually sounds the best idea. I'm getting bored Sat on sofa already but I know if I do too much ill feel worse! Tried to change the duvet cover after a nice bath yesterday as felt better but husband told me off and finished it as felt like I was pulling my stomach muscles! I did feel sore after so was a bit silly but I'm used to just getting on with things so know how you feel. I also have 2 dogs who pull on there leads so hubby is on walking duty as I know that will hurt !
I had a laparotomy for cyst removal years ago which is same scar as hysterectomy and was out and about 2 months after but still having to go to bed and give up some days, it was 3 months before I felt more normal as they cut through your stomach muscles. I'm hoping this will therefore be much quicker but dreading them saying ill need another laparotomy!
That's great you have your appointment through so quickly I was told 6-8 weeks which feels like ages away!
I hope they give you some options and you won't need to have a hysterectomy but I have read that they can even do that by laparoscopy now too which would mean a quicker recovery. When they said I'd need tubes removed he said there are a couple of docs that do that by laparoscopy so will definitely be asking at appointment.
Good luck and hope your feeling better soon, and let me know how you get on xx
Yes I won't rush into doing too much, a bit more care now will help in the future, im hoping on thursday i can walk the dogs (not hold them but to go with my hubby) my preop was last July, originally they were doing just the ablation but when I hadn't had a date through my doctor nagged them and also said I had lost enough weight for the lap too, so my new date came through and I rang to accept it and would I need another preop as have lost almost four stone since last preop but they said no, turns out they gave me the dose of anasetic for my previous weight which is why I was so sick when I come round.
I hope they can do the hysterectomy by laparoscope, but only if they are prepared to remove the endo at the same time, if they're going to even try to remove it then I would've thought the hysterectomy will be pointless, I'm also worried about ovaries going at my age with the old scenario of hrt and all that - they flood you with all this info minutes after you've come round from a general anasetic and then wonder why we're confused lol.
You take it easy too, I think we're all the same, we wake up each morning feeling yes today I'm back to normal, then start doing stuff and our bodies say umm no lol.
Hi yes by yesterday afternoon my body definately said umm no!!! Lol but now up and feeling better again! I can't believe they didn't check the amount of anesthetic no wonder you were sick! Yes definately need to take things slowly but getting some fresh air does help too only walked over the road to local shop this morning but felt nice to be out for 2 mins!
I know I have read that a hysterectomy is not a guarenteed cure if they can't remove all endo with it. But I also know every case is different too we can only go by what the docs say. I have read about hrt and I'm sure I would be nervous of this too but once you have spoke to your doctor I hope they give you some options and then once you have all the facts you have to do what feels best for you.
For now focous on feeling better and I know I'm telling myself not to rush into any decissions until i have all the facts.
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