©Julia Welstead 2012

Five weeks ago I had a hysterectomy and bilateral oophorectomy. Ooph is how it felt.  I was well looked after by excellent staff in a good NHS hospital, but even in this circumstance, there is an undeniable lack of aftercare and only a minimalist information leaflet by way of advice for one’s recovery period at home.  In the last five weeks I have compiled a list of all the things I wish I had been told:

Day Zero

There’s a bit of planning required before going into hospital, which you kind of have to work out for yourself. You aren’t going to be able to drive for six weeks (car insurance usually doesn’t cover you) and you aren’t going to want to walk to the shops or carry anything home for the first few weeks either. Also, no hoovering, hanging washing or tidying up. So if you’re the main food shopper, housekeeper, mum-taxi and dog walker in your family (which by definition most folk having this operation are), then you need to make other arrangements. I’m a single mum with kids, dogs, the whole catastrophe (as someone once said in a movie), so I lured in whoever I could from my family and friend list to come and help. For the first two weeks I had live in help from two absolute angels, who moved heaven and earth in their own lives in order to be with me, in week three my Mum came every day for coffee, housework and lunch (my house has never been so clean!), and then the boys were on Easter holidays and took over.  School and sport-club mums whisked my sons around town and took my dogs for walks.  Even if you aren’t the main carer of a family, you need someone to come and look after YOU, so get this organised. You really won’t be able to do it alone.

For a morning operation you’ll be asked to come to hospital the night before, for an afternoon op (which I was) you can arrive mid-morning. Either way you will have fasted for a few hours and will be feeling hungry and nervous.  Bring a book with you that you know will hold your attention. I got through three books in my four night stay, and they definitely distracted me from the worry, pain and boredom. Also in your kit bag you need 3 nighties, a light dressing gown, slippers (I took crocs) and BIG knickers. This is one of those things no one ever tells you! An abdominal scar does not want skimpy knicker elastic whacked over it for a good few weeks (maybe months) and the post-op swelling and bruising will put you up by at least one knicker size. So swallow your pride and get down to M&S for a six-pack of those big old granny knickers. I went for flowery ones, just to give myself a wry laugh every time I put them on, and also bought a new pack of sporty little black numbers as my prize for when I get back to normal (5 weeks on and they remain in plastic while I remain optimistic).

Your pre-op time will include a visit from your surgeon and anaesthetist. If you have any final questions or worries then speak out now. Don’t be shy or embarrassed, whatever it is.  I also had a visit from a fourth year medic who said she was doing a project on gynaecological surgery and could she ask me some questions? Fine by me, it passed some time and was just the usual stuff about medical history and so on, the answers to which I was tripping off like a pro. until she asked me what my post-op contraceptive plans were.’ Ummmm, I’m no expert’, I hazarded,’ but I think removing the whole baby-making system just about covers it, don’t you?’ She had the decency to blush, but I did wonder what these kids get taught in four whole years at medical school!

Before you know it (with the help of the good book and the various nurses and doctors proffering check-lists) you’ll be in the goonie and TED stockings (tight fitting white knee socks that you’ll be given to help prevent blood clots forming in your legs) and being hurled down to theatre on your bed. If you have any final questions, then it’s almost too late to ask them, but get in there fast with the anaesthetist as soon as you arrive. The next bit of your journey – the bit you will have been most worried about – is a breeze. Honestly. Anaesthetics these days are very clever and delightful to experience. You will enter a blissful oblivion, followed moments later by a gentle voice telling you it’s all over and you are back on the ward. Of course in reality several hours have gone past, but all you need to know is that there is bliss and then it’s over and you are tucked up in bed and being handed a self-service pain-killer baton.

Now I know I shouldn’t say this and my three teenage sons are shocked at my admission, but the morphine drip-feed button is the best invention ever. For the whole of my first night I was in seventh heaven as I drifted through beautiful dreams where anything was possible and I was invincible, with all my desires fulfilled. The baton has a wee light and when it lights up you can press the button again and get another mini-dose of morphine. You can’t over-dose (or I definitely would have done) and you don’t have to wait, with the pain building up, for an overworked nurse to come and give you a nasty injection. It’s a perfect system………until it gets cruelly removed the next morning……..

Day One

Look, there’s no pretending here: you’re going to feel a bit shabby. You will find yourself lying in bed resembling a beached whale wondering how to get back to its normal environment, with the nasty prediction that it’s going to be very difficult and painful to move. You will have a catheter in place (a tube inserted to drain your pee into a bag), IV infusion in hand (another tube carrying fluids from a bag into your veins) and possibly an oxygen mask over your mouth and nose. There’s a large sore area from your belly button down to below your groin, that you neither want to touch, nor have touched by anyone or anything. You may well feel as if you have the hangover from Hell – sore head, sick, very vincible and with a whole pile of regrets, top of which is having agreed to have this operation. You no longer have the magic button to hand and there are no nurses anywhere in the building. In the midst of all this misery someone comes and plonks a breakfast tray close enough to you that you can retch at the wafting aroma of porridge with prunes (did you really tick that box on the menu?), but not close enough that you can reach it. That’s OK, you definitely don’t want to eat it.

The good news is that this nasty moment will be short-lived. A nurse will appear and give you pain-killers, and anti-sickness tablets if necessary. Your hangover is mainly from the anaesthetic and it will go. You will quite rapidly progress from taking sips of water to being hungry enough to tackle the hospital food (but heed this tactful hint: get your visitors to bring in some healthy food items that you like and are used to).

My first visitors came in the afternoon of day one and I’m guessing I wasn’t a pretty sight, but they were very tactful. Sloth that I am, I was still in the hospital goonie and hadn’t even put a toe out of bed, my hair had that hideously un-sexy slept on look and I hadn’t managed my daily chin-hair check. Hey ho. If they love you enough to visit you, they aren’t going to notice these minor details. Sit them on your non-window side, so you don’t have to squint into the daylight and they don’t find themselves at eye level with your fully-lit unkemptness.

Day Two

 At some point in day one or two (depending how early in the day your operation was, for me this was day two) your catheter will be removed (just a fleeting stinging sensation as the tube comes out) and the IV drip taken down (but the wee needle will stay in your hand for another day or two) and thereafter you’ll be encouraged to drink lots of water. When you need to pee, it’s time to get up out of bed.

Freed of tubes, and with help from a nurse, getting out of bed is a lot easier than anticipated. Roll onto your side and just try to go with the flow and not tense up too much. Once standing, try to walk tall and not semi-crouch over to protect your belly. The latter will seem to be the best option, but you’ll get better quicker and your scar will heal better if you stand up properly. 

A brisk nurse will tell you to hop in the shower and whilst in there, rip off your wound dressing.  Yikes, that’s a bit of an ask isn’t it? Given the choice of me doing the deed or the nurse doing it, I chose to go it alone and spent the next half an hour gingerly tweaking at the edges of the dressing whilst showering it to a sodden mass until it miraculously peeled off without the slightest twinge of pain. The trick here is to take your time, but not stay in there for so long that you feel dizzy with exhaustion. Then get back to bed and lie down for a well-deserved rest, with your wound discreetly exposed for a bit of an air-drying.

Gone are the days of wounds being repeatedly re-dressed or sprayed with plastic ‘new skin’ types of stuff. Now, whether through evidence based protocol or just because it’s cheaper, wounds are left to their own devices as soon as the first dressing is off. This can leave you feeling very exposed, as every movement of nightie or bedsheet brushes against the scar. Donning the big knickers helps, as long as they aren’t too tight and are cotton.

By the end of day two you will have got rid of most of the trappings of surgery – the tubes, the mask, the hospital goonie and the wound dressing – you should be eating and drinking and peeing normally and all in all feeling a bit more like yourself. Nurses and doctors will have come to look at you, check your wound and blood pressure and so on. Visitors pop in and entertain, the book comes in handy, but mainly what you want to do now is sleep, and for the next one or two days sleeping, eating, drinking and the occasional toddle down the corridor to exercise your limbs is about all you should be doing. Rest up and give yourself a pat on the back, you’ve done it, you’ve got through the thing that’s been worrying you for ages!

Days Three and Four

With a morning op and no complications, you may well be asked to leave on day three, which I think is incredibly soon after such major surgery. If you have sorted out some good support at home then this isn’t a problem and the only advice I can give is to tell your driver to avoid pot-holes (a mean feat on Scottish roads) and go easy on all the road-work ramps. I was an afternoon op, and then I had a wee problem with low blood pressure, so I stayed a fourth night. But be aware that if the ward you are in is expecting more customers then you will be moved elsewhere. This is what happened to me and with hindsight I probably should have just gone home on day three. Instead I ended up all alone in a newly built Day Surgery Unit, with some very polite nurses who nevertheless hadn’t much of a clue why I was there or what to do with me. I felt like an unwanted guest, some old aunty who had turned up unannounced. I had a peaceful if somewhat creepy night in the deserted unit, and spent the next morning trying to explain to several confused day staff why I was in their bed space. Once my surgeon had found me and discharged me, and my prescription of painkillers and HRT patches had also found me, it was time to go home. I then had the problem that my friend-taxi didn’t know where to find me either, and in the end I did a very naughty thing and just gathered up my bags and walked out to the main hospital entrance to meet him. This is not to be recommended – the corridors and stairs which had seemed so easy to negotiate on my way in, became an endless, tortuous labyrinth on my way out. It’s worth noting though (with reference to ‘what to bring’) that minimalist packing into a small daypack is the best form of luggage if planning escape at any point ;~)

HRT. Hormone Replacement Therapy. To take or not to take? Have a good chat with your doctor about this before you have the operation, because if you are going to take it then the sooner you start the better. Hysterectomy (removal of the uterus) with oophorectomy (removal of the ovaries) causes what’s known as a surgical menopause ie whatever your age and stage, you will instantly start the menopause. If you are 52 or over and have already been having menopausal symptoms then it may be that your decision is to go ahead and get the menopause over and done with. If, like me, you are still in your forties (even if only just hanging in there by a thread) and have not been menopausal, then it’s a good idea to look into HRT. I decided to go for low dose, oestrogen only, patches, and five weeks in I have had no symptoms in either direction (ie I’m not menopausal, yet haven’t had any of the side-effects of taking too much hormone (read the leaflet for these), so I must have got it just right). Patches feel better, to me, than taking pills, and I believe they are more efficient because the stuff doesn’t have to go through the digestive system. I change my patch twice a week and so far I haven’t forgotten to do so. So far so good.

If you do decide to take HRT then make sure you get the first prescription while you are still in hospital. Unable to drive and not fit to walk more than a hundred yards, I couldn’t quite see myself tripping off down to my local medical centre for a GP appointment in order to get a prescription and then pop along to the chemist to collect it. Just thinking about that scenario made me weak at the knees.

Once You Are Home

Your first task is to go straight to bed and rest up. DON’T look at the state of the kitchen floor, or living room carpet, or at the piles of washing up or anything like that. Just leave it all be and practice some ‘zen and the art of not caring’ or somesuch, because your job here and now is to get thoroughly better and your route to this is lots of rest, good food and gentle exercise (not housework!). Relax and enjoy the rare experience of other people looking after your every need. You only have a few weeks of garnering sympathy, so make the most of it.

If you have children then expect varying reactions from them. Mine were all worried before-hand and very supportive after. We had some shocking moments though, as it became clear that they didn’t know where the spare bin-bags were kept, or what day the rubbish bin went out, or how to boil an egg, or switch on the hoover, and it is definitely the case that my invalid status has helped them all to become more independent and capable young men. Their future wives will thank me. One son wanted to see my scar (possibly as proof that I hadn’t just been away on holiday) while for the other two the idea of looking at mum’s lower belly was horrifying.

Exercises. The hospital handout recommends (and explains) pelvic tilting from week one, increasing to leg slides and abdominal contractions through weeks two to five and progressing to sit ups from week six on. I can’t comment on the sit ups (I hate them!) but as for the rest – do them. They help get your tummy muscles back, which is vital anyway but also increases your chances of getting into the old jeans. 

Week Two

Keep resting, keep eating, try to get a bit more fresh air and exercise each day. Whenever you are resting/reading/watching telly have your feet up. You will have been told to keep the TED stockings on for 6 weeks. I have to admit that I didn’t do this, but I did make sure to do lots of feet-up and ankle wiggling whenever I remembered. The hospital advice leaflet will tell you to lie on your back and do gentle pelvic rocking and leg exercises. Do them. They help get your tummy muscles back in shape. Sleep as much and as often as you feel the need. This is your body’s chance to mend itself and the more rest you get the better you will mend. You’ll be told tales (I did anyway) of women who were back at work in three weeks and running marathons at six. Ignore it all and go at your own pace, this isn’t a competition.

The weepies. I was led to expect that I’d feel all emotional about losing my reproductive organs. That womb which bore my beautiful children etc etc. Well maybe I’m just not poetic enough, but I didn’t have a problem with that at all. In fact I’d been rather looking forward to having a solid excuse for a good cry – two decades of held back tears allowed out, no questions asked, seemed like a great plan. But in the event I just felt great waves of relief at saying goodbye to my fibroid riddled uterus and cyst addled ovaries. And as for the prospect of no more periods – hurrah! But every one of you will be different and if there are tears then let them flow and just explain that it’s the hormones (or lack thereof) if anyone asks.

Things to be aware of: laughing, crying (see above), coughing and sneezing are all going to be painful for the first few weeks. This is when you find out just how many activities involve your stomach muscles.  Watching funny movies is a bad plan. I reckon I giggled once too often in the first week and I ended up with a haematoma (a collection of blood) forming under my scar. This has now resolved itself into a hard lump, which my doctor says will take a while to gradually diminish. It’s a bore and I wish now that I’d watched dismal films or serious documentaries or badly acted soaps. 

Pooing is another potential pain (in the arse!) of which no one speaks: us Brits are so coy about these things! What with the interruption in your normal diet, the pain factor and not wanting to put pressure on your wound, pooing can become problematic. The trick here (perhaps I should have mentioned this earlier) is to make sure you go into the operation with a clear colon (like a clear conscience, it’s a great feeling) by eating lots of fruit and veg and drinking plenty of water in the prior weeks. Keep up the good diet post-operatively and you should escape problems. The first few poos will be slightly uncomfortable and, not to mince words, the looser it is the easier it is, so keep drinking lots of fluids and if you have to eat prunes mix them with a lovely creamy natural bio yoghurt and a squidge of honey.

Weeks Three to Five

These are the dangerous weeks. You’ll feel better enough to start doing stuff, but you must be careful. Don’t drive yet, don’t walk the dogs (unless they really don’t ever pull on their leads), don’t get the hoover out and don’t lift bags of shopping. If you are using an online supermarket delivery system then get the driver to deliver your shopping onto your kitchen table, rather than the floor, or the downstairs lobby.

Work. Many women may feel obliged to return to work by week four. I’d say look into the legalities of your situation and take as much time off as possible. You may feel fine whilst at home, but your energy will still be being used for healing, and it can be counter-productive to re-start work too soon ie you may well need sick time off at a later date if you push yourself too hard right now.

Do start getting out and about a bit more. I have been whisked off once or twice a week by a lovely friend for coffee or lunch. I feel like the Queen of Sheba as I slide carefully into the passenger seat to be driven to the venue of my choice. Such luxury.

This is going to sound like a TV ad.  – one of those, ‘because you’re worth it’ hair colour ads – but listen up. You’ll be getting to the stage when you want to stop feeling like an ancient invalid who no longer does the things she used to. Now is the time to arrange to do something ‘just for you’. Whether it’s a night at the bingo or a day at the races, a trip to the hairdressers or a potter round a bookshop, go and do it. At the five week stage I went for the wicked indulgence of a few hours in a spa. Squeezing into a swimsuit felt odd, but slipping into the Jacuzzi was pure pleasure. Despite my efforts to move around with good posture, the weeks of holding myself carefully had caused tension in my back, shoulders, hips – all over. This solved all of that. Relax in warm bubbly water, follow with a gentle swim, a steam and a sauna. Repeat several times. Drink plenty of water. Snooze. Wake up with a warm shower. Beautiful. For me this day was a transition between feeling like an invalid and feeling like myself. I was flat out exhausted the following day, but it was worth it.

Sex. When to give it a go after the op. As a singleton I’m not qualified to advise ;~) but I’ve just looked it up and here’s a good website link:   http://www.nhs.uk/Livewell/Goodsex/Pages/sex-after-hysterectomy.aspx  The gist seems to be, after four weeks or more and gently does it,  possibly with some ‘bought in’ lubricant.

Week Six and onward

This is a milestone: whether psychological (most available info suggests that this is a six week recovery type of op) or physical, or a bit of both.  For me it has meant driving again (straight into the role of 5am mum-taxi to swim training) and therefore (eureka!) being able to get back to hiking the hills with my dogs. It’s April and there’s nothing better than getting out into these beautiful Spring dawns. I realise 5am walks may not be everyone’s favourite activity ;~) but regular fresh air and exercise will definitely make you feel better. I’ve also been advised to use swimming to get back to full fitness, as it gently exercises all those hidden muscles which have had a tough time. Add in the dreaded sit-ups and pelvic floor exercises and you’ll be fit as a fiddle in no time.  In another eureka moment – yes, I’ve ceremonially binned the big knickers! 

Good luck to all participants, I hope it goes as smoothly for you as it has for me. If you are still nervously waiting for your operation, remember the reason you are having it – all those nasty symptoms – and keep in mind how much better you will feel once it’s done.