I am having trouble replying to posts here - keep getting a gobbledegook message. However, it seems to be letting me reply on this latest post so here goes....

I wanted to say firstly, how much hope "sundial" has given me. Reading her post from 1st Dec 2019....I have been through the hysteroscopy under GA for the first time ever in my life (GA) and I survived! I didn't die under the GA! which was my initial fear. Now, I have been told that I have atypical hyperplasia (need to ring the nurse when she is back off hols on Monday to ask a few more details as I didn't take it all in fully when getting the results, as I was still in denial that it could be happening to me!)  and need to know if it is simple or complex. In the meantime, I am booked in for a total hysterectomy on Weds 12th April. I am coming to a certain acceptance but I am going through a bereavement for my health as I have never in my life had any health problems, I am not quite 63 yet and I only ever wore a hospital gown for the first time at my hysteroscopy a couple of weeks ago! I have researched a lot since I got the news, and it seems that my chance of actual cancer in the short/medium term is about 30% if I don't have this hysterectomy. I am still wavering, wondering if I am doing the right thing. 30% is a fairly big risk - but - how can they be certain?? On the other hand, I am very scared that I will end up with incontinence, and I already have issues with constipation that have been with me literally since I was a toddler. Nothing short of an enema is going to clear me out after this surgery, as I always take fibrogel anyway and stool softeners before and after a long journey. My diet is very healthy - 7/8 fruit and veg a day, never mind just 5! I am really scared that they will send me home before I have been able to poop, and I will panic, being bunged up. My endometrium lining was measured at 2.5cm. My CA125 was 109 at the first blood test, and 65 at a subsequent one and I don't know why it might have gone down and no medic seems able to tell me? 

However....I wanted to say how much hope Sundial has given me! I have read so much about recovery time being weeks not days. 6-8 weeks off work (my job is very physical) and I cannot drive, cannot dance (I love my Silver Swan ballet classes) for weeks, and cannot bounce in and out of bed but have to roll on my side or something....and I can only do the washing up after the first three days or so...I have never been ill or unfit in my life and I am struggling to imagine what I will feel like in the days after surgery. I live alone and have two dogs to walk. I have read that I can add on five minutes extra walking per week. I walk miles most days with my dogs! What am I going to feel like that I cannot walk more than a few hundred yards at best??? I read that you can do certain things such as walking and driving and washing up and hoovering "when you feel able to" - well, how will I know when I feel able to? what does that mean? Does it mean if I get pain when doing them? I am expecting pain...but have a high pain threshhold so I always get on with things through pain. But if I do so after surgery, will I unknowingly burst something inside? and how will I know? I am also scared of the blood. I bled heavily for a week after the hysteroscopy - much more than the period-type bleed they told me. I have actually bought a pack of puppy pads for my bed! as I stained clothing and bedding after the hysteroscopy and I dread flooding after this next surgery.  I have read of people who cannot sit at the computer for more than a very short while. I have been told I can bend; then told that I have to bend by bending my knees which I will find hard. I have read of people who cannot sleep lying down..of people who spend most of the first two weeks half-lying on the sofa propped up with cushions...I have been told I need 8-10 hours sleep a night to heal....I haven't ever been able to sleep that long since I was about four years old! So much that is contradictory and I have been feeling more scared about my post-surgery invalid status than about anything else.

And then the food!! After my hysteroscopy, they offered me toast. I don't eat toast or bread. They offered me sandwiches and biscuits. I asked for prawn sandwiches which is the only one I ever eat and that was the one they didn't have! So I snacked on my snacks I'd taken in with me: dried fruit, banana, ginger etc. I tried to find out the hospital menu and at best it looks like "brown food" such as macaroni cheese, lasagne, toad in the hole. What veg would I get? If you don't order in time, you apparently only get sandwiches!! They say I will feel nauseous after the GA so I am stocking up again with ginger; a friend has told me I won't feel like eating the first day. I never don't feel like eating!!! If I don't eat a proper meal on the first day, moreover, my bowels really will be shot by the following morning. 

So sorry for this awful long "rant" but I seem to be surrounded by tales of all the things I won't be able to do for weeks after this surgery and I am really struggling to imagine myself unable to move and unable to do the tasks I have always taken for granted.

So then I read Sundial and she had keyhole as I am to have, and she was home by lunchtime the next day. (Which worries me slightly because if I bleed heavily, I would prefer to be in hospital than alone at home and terrified) BUT she said that she only took two weeks to recover!!! That gives me so much hope! I can deal with two weeks - plus six weeks off work which despite only getting SSP, I am going to milk as much as I can because everyone else at work takes time off sick and I think I've had three weeks total off sick in the last 35 years!

Then I read a post from DaisyW and I could relate so very well where she said that she had never been through anything like this before. Nor have I!  And I also like Daisy, have found that it's easier for me to tell as few people as possible in my daily life. My neighbour and friend knows, the couple who are looking after my dogs for the two days I will be hospitalised, know. Latterly, I have chatted with one of my work colleagues of a similar age to me and bless her, she is coincidentally at the blood test stage I was at in early December and is as scared as I was then...I didn't even know! So although I hope that hers isn't what mine is, it did help to share fears and worries and I was able to reassure her a little that there are so many things her pain could be because I'd researched all these things myself and also hoped myself it wasn't what it has turned out to be for me...but hopefully hers will not be the same as mine. I had to tell my manager, who is a young lad of about 22 but he is SO understanding! Otherwise almost nobody else has any inkling and I hope that I can keep it that way for as long as possible, as I just don't "do" being ill or incapacitated. I have worked a lot in the care sector and been on the other end of all this, and find it hard to accept that I am now the one on the receiving end and I haven't even reached retirement age yet! 

I point blank refused to sit in a wheelchair when I had come round from the GA at my hysteroscopy. I told them I am not an invalid! and I paced up and down for about half an hour until they had two nurses free to walk me down to the recovery lounge. I figure this time I might not be quite as alert and will probably have to succomb to being pushed somewhere as again they tell me I will be lying in bed for most of the day of surgery. Not sure how my back is going to tolerate that, never mind my need to be active as soon as possible. 

So sorry for this horribly long "rant" but I needed to let this all out. I am no longer scared of the actual surgery, not scared of it being full-blown cancer as I haven't yet been told it is, but I am very worried about how inactive they will insist I am for a long time after.

So I have my piles of books I am planning to read, am off to buy a portable DVD player tomorrow so that I can watch in bed if necessary some of my DVDs I never get time to watch when I am working and leading my normal life, and have warned people I might be offline for a few days as I can't use my laptop in bed as I don't want to have to buy a lap tray just for this. I am stocking my freezer but keep reading that I will struggle to cook meals and someone else needs to cook for me.(?!?) And that I ought to ask someone to feed my dogs for me...help! why on earth would I not be able to open a can of food and scoop some dried, and put it into their bowls?? Just how ill am I actually likely to be feeling?

It's all a challenge but I wish it had waited another few years until I had managed to enjoy being semi-retired for a few years! 

And I still feel like this is happening to someone else, not to me. It's like a bad dream I cannot wake up from but still expect to. 

I think keyhole is much quicker to recover from, I had the open surgery with the large c section type cut, they say 6-8 weeks for that, took me longer. But keyhole is supposed to be much less stress on the body so I think you'll find most of the long recovery posts are probably open surgery. I was told not to lift anything heavy, so not to strain the wounds. So I changed the bed, cleaned up etc before going in to hospital. They want you up and walking around as soon as possible  but not lifting or straining etc. so they will have you up as soon as safe after the op and fetching your own (small) jugs of water etc. It was my First time in hospital, was petrified, they did the hysteroscopy and surgery in same procedure so I wasn't sure which bits of me were going to be missing when I woke up never thought this was going to happen to me! 

Yes, take  as long as you can be signed off work for by the hospital  because it's easier to go back early ( if you really wanted to ) than having to go to the gp to extend it but I found I could be more mobile when not stuck at a desk which was better for my recovery. 

hopefully someone who had had keyhole will be along on here soon x

Bless you for your prompt reply!

Sundial said she had keyhole and she is the one I latched onto with her two weeks' recovery! Ok I know that probably isn't complete as-new-never-had-surgery recovery but it sounds so very hopeful that I may be back up and walking and doing most normal things (except maybe ballet alas for a bit longer) after two weeks. That gave me a lot of hope.

I don't understand what "recovery" really means. I have never not been fit and healthy. I have never in my life had to sit on the side of the bed and roll in and out of it - I have always jumperd in and out like a teenager!!

I am praying that they won't convert this keyhole to open surgery whilst I am under. I am a little scared of that. They were going to give me sedation for the hysteroscopy and when I woke up I was told they had converted it to a GA as I "wasn't tolerating the sedation". I still don't know what that means as he wouldn't explain exactly what "not tolerating" means.

So I am slightly anxious that this might not turn out quite as I am signing u,p for as I now know from experience that what I think I'm signing up for, might not end up being what I will get!

One other thing the nurse told me is that I cannot take a bath for 8 weeks! I told her, I am going to be minging!!!! I don't possess a shower. I have dug out an old bowl so that I can wash my feet because when I walk the dogs in this weather, my feet get filthy. I also have a foot spa that I have never used (never had time or desire to physically pamper myself!!) so I will dig that out as this might be the chance to finally use it, for a proper purpose!

I WILL be up and walking ASAP...probably as soon as I wake up!!! They are going to have trouble keeping me on bed rest, that's the problem, because even if my body is sore, my mind wants and needs to be up and active at all times. 

They told me I can't lift a full kettle of water but only enough to make a cup of tea. So I don't know how I am going to make myself a hot water bottle for bed, as that requires a full kettle otherwise it won't be hot enough.

Apart from my few hours for the hysteroscopy, this too is my first ever time in hospital and overnight too. (I was in A&E a few times as a kid for dog bites and being over-zealous on the swings and bashing my head!!)

I can totally relate to you therefore. In my case it was also a complete rejection of having to wear a gown, having to lie on a slab as I called it, having to have something stuck in my hand and left there (cannula) and whilst I did accept the DVT socks because I know that's sensible, I let them put some blood thinning injection in my tummy after, and I had the bruise for nearly two weeks - it has only just gone. 

Hospital gowns to me meant, I am an invalid. I am however now starting to realise that my past, healthy life is over and that there are going to be hospitals now in my future, in some form or other. Even if it's only regular gynae appointments or scans for a few years. I feel so lucky to have got to almost 63 with complete health and fitness - people much younger than I am don't have this fortune.

I am just going through a bereavement atm still, grieving the loss of my health. This is just the way I deal with the change to my life. I can accept it a bit better by viewing it as grieving for what I have lost, but at the same time I am also starting to plan for new things, some of them positive, coming into my life. One tiny example is that I have already met two LOVELY nurses who are good listeners and will gradually guide me through this as time goes on. I never knew nurses could be so very understanding and caring and empathetic. I've never had any dealings with nurses before. 

I am not so much terrified now that I know I woke up after the GA and didn't die (I think I worried the nurses as I was fully awake but it was such a lovely relaxed feeling that I didn't actually want to open my eyes! and they kept saying "open your eyes...wake up...sip water" and I said, "I don't want to yet! I'm perfectly happy for now as I am"!!)

Gosh re-reading your words, I can see why you were additionally petrified not knowing what you would wake up to! I said the hysteroscopy was my "practice run" for a full surgery as with my symptoms still being here since November, I had a pretty good idea that there was something not right in my body and that I could be looking ultimately at surgery.

So at least now I know more of what to expect than I did a few weeks ago!

I never thought this would happen to me! It doesn't feel like it's me it's happening to me really, still. I had always assumed that I would be healthy until I hit 70. Both my parents did get (different) cancers but my dad's wasn't until his late 60s and my mum's, in her early 70s. So I always assumed I had a few more years yet and would be able to work and live as normal until I draw my state pension at 66. (I also assumed I would always be able to work part time even after that, as I cannot survive very long on the state pension alone and I have no other pension.)

I have told Work, 6-8 weeks but financially I would like to make it 6 weeks. I won't go for less as if I am fit and feel fit and no more treatment needed, I will simply enjoy the luxury of being off work without having to break into my holiday allowance. My job is very physical. I work in a village shop and never sit down. We don't even have a chair, if I wanted to. I serve customers, serve post office, stock shelves, carry heavy stock to the stockroom where I get on the step ladder to put it on the shelves there; I bung the newspapers and heavy boxes of magazines into the trolley to put them out/do the returns. I bake. I lift freezer lids, and bend and stretch and twist and you name it....I am more active than a couple of the youngsters who are literally a third of my age. 

So going back to work too early isn't really a very good idea! I will certainly go back to ballet after a month IF they tell me it's safe to, but will milk it at work if I can, because I know what I'm like...I am a "doer" and even though apparently having cancer or possible cancer, counts as being Disabled, legally (argh??!! I reject being called disabled with a vengeance! but it might have advantages I can also milk, on the other hand!), even though I could turn that toi my advantage and demand my employer buys me a chair and allows me to do no work other than sit at the till and serve, I know myself that I will not be able to do this if I go back! My mentality is to be active, and I will absolutely NOT be able to sit at the till and see empty spaces on shelves or newly-arrived stock and not get up and run over to see to them.

So it's best if I forget Work for six weeks because what the eye doesn't see, the heart doesn't grieve over - or whatever that expression is!

My problem is that I am TOO mobile and too used to being so. I am worried that I will feel perfectly fine but will do some damage to inside parts that I cannot see. And I don't know how to get around that. 

The bath thing got to me, I had a shower before leaving hospital. Main things are not to get dissolvable stitches soaked and just pat wounds dry, don't forget and absentmindedly towel them dry.  Getting up out of a bath would have been a no for me first few days .  Check with the nurses likely time as I can't remember now but I don't think it was for too  long.   Or is there  any chance you could get one of those push on  hair wash shower attachments.  For the kettle just add mugs of water rather than carrying and filling up.

It's hard to know whether surgery is the right thing,  but once we know about things then you feel you need to catch things early.  I still wonder if I'd have been ok without surgery but COVID hit shortly after my op so I would have been waiting a long time.    

When you get your fit note, make it clear you are in a heavy lifting job so you get a full amount of time. 

You sound so agile and fit that it sounds like you have every best chance of a quick recovery and stitches healing.  Keep asking questions of the specialist nurses, they are there as the surgeons don't have time and know lots x

Thank you...that's very helpful and I also bear in mind that with keyhole it might not be quite as severe as it was for you.

I can't imagine being physically incapable of getting in or out of a bath???

The bath tap attachment probably wouldn't work for me as I'd still have to stand in the bath and bend my head forward. I always wash my hair over the sink. I'd be worried about spraying water all over the bathroom and as my floors are wood it might rot them. (I live in a park home)

Luckily I might not even be able to see the holes in my tummy as most of them will be low down. I am a bit worried that I won't have a normal tummy button any more as he said he is going in through that for one hole :(

If as I have researched, I have atypical complex hyperplasia, and my lining is 2.5cm (250mm) and that must have been growing for quite some time, I don't think progestin is going to do any good any time soon. That would be my only hope and if I'd had HRT ten years ago I might not have got into this situation but nobody ever told me and I never thought to ask if HRT had any other use except allaying menopause symptoms...and I had no symptoms then!

But what's done is done and I cannot turn the clock back

I researched with the above conditions, my risk of this pre-cancer developing into cancer is up to 30%. This could happen in the next year or two. I am not a gambler and 30% isn't very good odds - it's a one third chance. I am never lucky with the lottery in any way. I am assuming that my luck with my health has run out and I could be in that 30% and therefore in a year or two I could be looking at a much bigger problem. The consultant seemed to be saying that he was confident that what is there is removable completely, and that my chances of needing subsequent radiotherapy are slight although he cannot yet of course rule it out. But I am still slightly doubting, and wonder how they actually can be certain and sure that these cells are bad ones. I might be throwing myself into years of incontinence for no good reason. On the other hand, if I delay a few months or a year, I could be condemning myself to death before I am 70. So perhaps I just have to bite the bullet and take a massive chance that the results are accurate and not a false positive or anything. I keep saying, I am not a Gambler and I probably ought not even be considering gambling with my health and my life!

I still haven't 'got' why lifting a full kettle is going to split stitches in my tummy. I have practised doing so and holding my tummy and I cannot feel anything moving inside. On the other hand, when I walk I can feel all my tummy bobbing around.

Who do you ask for a fit note? Does the hospital provide it? They told me last time at the hysteroscopy they would give me a sick note but then they never did. I took it as holiday anyway but would have liked to have a sick note just for the record in case my HR dept queried it in the future.

My fear is that I will need and want to move around too much too soon but if I just have a tummy ache which I've had anyway since November, I just live with it and get on with life. If I have sharp pains - which I also had in  November but now haven't had for months - I neck a couple of paracetamol and get on with life. They don't work on me but the fact I have taken them gives me the illusion I can get on with things. 

There won't be many stitches...just the outside holes and he said he cauterises the veins etc inside me. Not sure if I will have stitches at the top of my vagina where he will pull out my womb and other organs. I guess it's no worse than a new mother who has her vagina torn by birthing a large baby. I have never had kids so I don't know, but it's just what I have heard. Some young mothers have prolaspes and long term continence probs due to their birthing procedure so I guess at my age I ought to be grateful I've spent a long life not having any such problems. 

I can't quite imagine how bad I am going to feel that I might not be able to dance around my lounge to music on the TV but without even asking, I have figured out that dancing is a no-no but I just don't know how soon it is safe to dance. I will dance when I want to dance...but, if I am going to split something inside and haemorrhage and not know until it is too late, I need to find out how to tell if I am not safe to dance. 

I am very agile for my age. I had just bought myself a balance board as we have one at dance class and mine is a lot heavier and more challenging that our dance teacher's plastic one...I won't be able to use that for maybe many weeks :(  My balance was just coming back to the levels of when I was in my 20s and 30s and I'm worried I will now lose that for ever. 

I am overweight which is the one thing the consultant pointed out whe n I asked why I have developed this. I have since researched that apparently if you are overweight the fat in your body produces excess oestrogen and then that creates a serious imbalance between that and progesterone so that when you lose most of your progesterone production after menopause, the oestrogen kind of takes over and that's what causes the endometrial hyperplasia in some individuals. I was at an AGM this aft and the whole committee bar one, are about 35-40 bmi minimum by the size and shape of them.They are mostly a bit older than I am too. I have no idea how many of them have ever had a hysterectomy but I found myself looking at their rolls of fat, to put it bluntly, and thinking how unfair it is that they don't have what I have, despite being gross. (They may have for all I know...but then they have maybe just got lucky and they don't have)

My bmi is hovering just over 30, verging on 31. So I am not huge. I told the consultant and nurse that this is because when I was working in an insurance office for 8 years in my 30s, I used to snack on about 4 bags of crisps and two mars bars a day every day and even used to actively look for the highest calorie food items because I only weighed 7 1/2 stone all my life until I got to my early 40s and didn't realise that the weight I was very slowly putting on, was due to menopause and the build-up of all those calories I was desperately trying to fatten myself up with for years! They laughed when I said about the crisps and mars bars and I said, no it's perfectly true! I wanted to go to a "Fattening World" because all my colleagues were having a great social time at Slimming World...but there wasn't such a thing for me! So now I reap the results of all that, and my weight really is about the only risk factor I have for this because apart from my parents both having cancer but different cancers, I have no other definite risks that I can see. Although they do include never having had children, in the risk factors. 

I don't quite understand what "healing" means. I cannot see any internal stitches or cauterisation. So how will I know when I have healed inside? Does healing mean, when you no longer have pain? I have all sorts of aches and pains in places even unconnected with my tummy and have even had this tummy ache for months and I just get used to it and don't even think of it as pain so if it eventually vanishes I probably won't even notice the difference. I never even took paracetamol until I got the sharp pains back in late November. Now, I take two paracetamol first thing before going to the toilet as that's mostly when I got the really sharp pain for a couple of weeks in  November. I don't actually need them and haven't for a long time but I take them "just in case" because if I think something will work, it does. (Also if I cannot believe something will work, it doesn't)

I also wonder why I had that severe pain in November and now don't have it any more since then. Even my bleeding has stopped since I had the hysteroscopy, and is now just a slight discharge. The bleeding was going on for several months before. So I am a bit worried that whatever they did at the hysteroscopy, has resolved the problem and that if I had another test of my cells it might give a different result. The only thing is that I still have this low-level tummy ache but how can they be sure it isn't emanating from elsewhere and not from my womb after all?

Nobody seems able to tell me.

On the other hand, removing everything will lower my long term risk of cancer in that area completely. So I won't ever have to worry again about looking for blood there. I am just praying that the pay-off for peace of mind, won't be that I have incontinence problems now and in the future, or prolapse of something else inside me. 

Don't worry about the tummy button, I had 4 keyhole incisions too, they healed quickly, no sign of them.  Just keep the the tummy button clean and  dry with a cotton bud, no creams, salt and water or tea tree only.

(My surgeon tried first with keyhole just in case it would work because she said it's so much better that way )

Thank you...and especially also for reading so patiently all my ramblings!!

I am hoping they don't decide to do an open after trying the keyhole but he did say it would be keyhole and he wasn't seemingly predicting it would not be. 

I have a long list of questions to ask my nurse, Gail, on Monday. I think she will be patient with me also - she was when we chatted face to face. 

If you think of this in terms of your dogs, if they had stitches they would say I want to scratch, I always have, I like it, I can scratch why don't you let me? It a bit like that and lifting things, you will be able to lift heavier things but probably shouldn't for a few days or so. 
Like yourself I'd never had a sick note before in over 30 yrs of working full time so didn't have a clue, so much easier if the hospital write you one,  saves trying to get to the gp. I think they said they gave out 2 weeks for keyhole, 4 for open where I was, it varies, so that's why I thought stress the heavy lifting to them if the person on the day gets a bit stingy with it x

I keep reading that even with keyhole, I shouldn't lift more than 20 pounds for 6-8 weeks. That pretty much is a large part of my job! so although financially I'd like to be working sooner, I think I am going to have to have a full six weeks off. If they know what I actually do at work, I imagine they will provide a six week note without batting an eyelid! 

Everything I'm reading implies this 6-8 week thing so I don't understand why they would only give a 2-4 week sick note when you aren't supposed to do housework or mow the lawn or lift a child before 8 weeks?? (Luckily I don't have a lawn...and my dogs don't care if all their hair is all over the lounge but I don't really understand why you cannot hoover as it's only pushing a hoover across the floor.)

I have had several female dogs, all spayed. Had one who had a pyometra at the age of 9 so had to be spayed at that age for health reasons. I know what dogs are like after a spay - off their feet for about 24 hours, no bowel movement for about 2-3 days (I am scared stiff of that as I get bunged up so easily normally and I have never mised a day since I was nine, so missing two days is going to really panic me) and then after two days they are running about as if nothing had happened to them. And I wonder why humans are not like that when they have a hysterectomy? Almost all dogs are spayed with a large incision,  moreover, and not keyhole. I can only take my cue from my dogs and look towards reacting as they do - if they can be up and about so quickly (and it's very hard to keep an active dog from running around but they rarely if ever split their stitches with normal walking and running, even the day after surgery) then I'm sure I also can be!

Hi 

I have the same symptoms as you. The lower back pain is awful. Had a biopsy under GA 2 weeks ago and had to stay in overnight ( bad reaction to the GA) and still waiting for results and going out of my mind most days 

here if you need to chat  best wishes x