Hi all,
I was hoping for some advice from those who’ve had the rad hysterectomy. Mine was through open surgery almost 4 weeks ago.
At night I keep waking up with really sore hips, not the top of the hip but the bottom I guess where the femur meets the hip. It’s usually the top of whichever side I’m not laying on. I can’t sleep on my back as it stretches the incision too much. I often wake with a numb bum too! Just wondered if anyone else had experienced this?
I’ve also started having very frantic dreams, nightmares and waking up grinding my teeth. Not sure if this is a result of surgery, the rollercoaster of cancer or what? I’m finding it really hard to work out what’s going on. I feel ok in the day then about 10pm my mind goes crazy. I’ve suffered from anxiety in the past for which I’ve had CBT but this seems different. I guess maybe hormones could have something to do with it? I did keep my ovaries so they’re probably really confused…floating around wondering where their friends went.
Thanks in advance
Jo xx
Hi Jo,
You poor thing. I do understand what you're going through and I've had some similar things. Even though you've kept your ovaries, there is a theory that when they get prodded about (which they do in a radical hysterectomy) they get really cross and start over-producing oestrogen. It takes a few weeks for them to calm down, and when they do calm down and start going back to producing their usual amount, it can then mimic the symptoms of the menopause for a few weeks (because of course you're on a hormone 'come down'). It sounds like this might be what's happening in your case.
Having said this though, four weeks really isn't that far in. You've been through so much and the operation that we've both had is so major, that it takes the body a really long time to adjust to what's happened to it. You can get all sorts of aches and pains for quite a long time afterwards. Hospitals are mistaken, in my opinion, in being so 'upbeat' about recovery, because then when you're not rollerskating after a fortnight you can start to think that there's something wrong with you. I would suggest that physically, what you're going through is entirely normal, but if you're worried about it, then there's no harm in ringing your cancer nurse to see what she thinks.
As for things like the psychological effects well, frankly, where do I start?! You are very early days Jo and you really need to give yourself time to come to terms with things. It takes a long time and as you say, is a roller coaster. Post-cancer, once you've had the 'good' results, it's a different feeling from when you've actually got it, but I wouldn't say it's any easier - it's just different. It will take time for it to get easier - you've had a massive and very scary thing happen to you and that's very very hard emotionally. I had awful awful dreams/nightmares at about the same stage as you - really upsetting - and I still get them sometimes now. You're probably grieving for all the things you've lost. I know I am! Grieving is hard and there are no rules to it - it takes as long as it takes.
Anxiety is a big thing with cancer, so if you've had anxiety in the past it's no surprise that it's surfacing again now. To be honest, even the most laid back of people suddenly develop massive anxiety when they get a cancer diagnosis - it's perfectly normal and understandable. See how your sleeping goes, but obviously disrupted sleep over a long period of time isn't going to help you emotionally either, so if it doesn't get better after a few weeks, I would seek some extra help with this.
Keep coming on here if you think it helps you Jo - we're all here for you.
Much love,
Annabel. x
Thanks Annabel,
I’m feeling moderately better physically but in a grump mentally! I suppose the well documented (on here anyway) flat feelings post treatment are settling in. Friends who were checking up on me have all but dropped off now and my partner has loads of work to catch up on so I’m feeling lonely and a bit underwhelmed with my lot!
Had to order clothes 2 sizes bigger as I’m stacking on weight due to the inactivity. Awaiting my tent arrivals shortly.
I went for an exciting trip to Boots yesterday but felt really gross and vulnerable walking round the shop. I was with my partner but it didn’t feel great.
It’ll get better I’m sure. Think Sheffield needs a support group! Maybe when I’m better I can put my energies in to sorting that out.
Xx
Hey Jo,
4 weeks is no time, especially if you had an abdominal section. I feel for you, I really do. I certainly remember tiptoeing around Waitrose the first time I felt up to going out, terrified that someone would barge into me with their trolley, so I know what mean about your foray to Boots.
In terms of friendss, I think that most people (Brits especially) don't like to intrude. It's not that they aren't thinking of you. Write an email, stick a post on Facebook or send out some texts saying you'd appreciate some visitors (especially if they come bearing cake) and I am sure they will come running. With your fab sense of humour, how could they stay away?
Finally, don't forget that you do tend to get a lot of abdominal swelling after this surgery. It's not necessarily anything to do with being fat although it can definitely feel that way. I think I am likely to be wearing hideous stretchy clothes with elasticated waists for the forseeable future (I look awful but I'm soooo comfy!).
Hang on in there - it will get easier. xxx
Thanks Rosehip,
Dragged myself out of my pity hole and helped make a healthy salad for tomorrow. I love cooking and have missed it so much over the past month. Felt good to be chopping some stuff and making a dressing!
Going to aim for some gentle stretches and a short walk to try and get my hips loosened off too. I’ve been given some exercises by the gynae ward after surgery.
Did either of you try swimming? My paperwork says it’s fine if you’re healed to go at 6 weeks so I’d love to, depends how I am doing by then I guess (and if I can get my cosie over my swelly belly).
My boyfriend’s managed to dye my massive granny pants a horrific pink in the wash. With those and my uniform of no bra, baggy t shirt, compression socks and jogging bottoms I look a treat! It’s working for sympathy points though.
Oh I have one more question re leg hair. I bought an epilator but my nurse said only use a Ladyshave due to the risk of lymphedema. Have you taken precautions or just carried on as you were?
Xx
Blimey, with the giant pants, swinging boobs, sexy socks and so on, why on earth do you need to worry about leg hair? Go fuzzy and call it 70s retro!
That's what I did - seriously, I had to get poshed up to go to a ball on Saturday and it was the first time I had shaved them for 12 weeks (was wearing a long dress so did debate whether to leave them but didn't like the way my hairy toes were sprouting out of my sandals!). Don't think the bath water will ever go down the plug hole again...
Seriously, save the bending over for important stuff like putting nice things in the oven. I love to cook too and found my slow cooker to be a really good thing to use when I was a bit feeble. Got my man to line it up on the worktop for me before he went to work then all I had to do was a bit of light chopping, adding to the pot and apply my lazy culinary genius. Made the house smell lovely and homely, gave us some great (even if I say so myself) stews, curries and soups and it didn't matter if I set it up and then dozed off for the afternoon. It also meant that I felt I was contributing when I couldn't do much else.
Gentle walking is good, but take it easy and wrap up warm. You won't be going very fast to start with and I used to get very cold (although it was blooming freezing then). I took a hiking pole out as a walking stick for a while - I didn't really need it but it gave me a bit more confidence after I was nearly sent flying by an unleashed dog the first time I went out on my own.
Haven't been swimming due to the leg hair situation - would have looked like I was trailing seaweed. I was absolutely desperate for a bath by 6 weeks though. My sister sent me some Sanex unscented bubble bath so on the appointed day, I filled the bath with warm water and bubbles, made a pot of tea, propped up the iPad on the laundry basket and settled down to watch a trashy movie on Netflix. Absolute bliss.
Right up to the point when I tried to get out of the bath and realised I didn't have the strength and was at risk of straining my belly muscles. In the end, I rolled over and got onto my hands and knees and got up that way, but it still flipping hurt.
So, enjoy your salad tomorrow my dearie, but don't try to be too good too soon. We can only suffer in so many directions at once! xxxx
hi jo. you are doing really well but try not to rush things. it took 7 weeks for my wound to heal and i certainly no about the pulling when you lay on your back. i slept on the sofa with my legs bent for weeks. i went through lots of emotions.from being fit and healthy to not being in control was the hardest try to remain positive and it wont be long now before you start to feel some normality. take care. xx
Thanks ladies,
Feel like I’ve turned a corner this week and feeling much more like myself. The belly seems to be smaller in the mornings now and with my new clothes that are comfy and fit I feel much better. Farewell jogging bottoms hello leggings!
Feeling like there is light at the end of the tunnel, thank you for your support.
Xx
Hi everyone
I had my radical hysterectomy just over 2 weeks ago and still cant move around wothout getting aches and pains in my tum or my back!
Also my tum is sooo distended, it makes my ribs ache when i am sitting down, is this all normal? I dont know if i am doing too much, or too little moving around?
Any help advice would be really appriciated
Hey Flossey,
A just 2 weeks post op it’s still very early days. I was managing the stairs maybe once a day and my partner was doing most things for me. Occasionally I had a tiny walk outside but it hurt a lot.
You’re still in maximum protection stage so take it very easily, no bending/lifting etc. My partner was still putting my socks on at week 4!
Just do what you can do, if anything hurts stop and get plenty of rest.
My belly was very uncomfortable at 2 weeks too, I had an open incision did you? It does get better though.
Take good care of yourself and ask if there’s anything you need advice on xxx
Hi Jo
thanks for your response, i was soo pleased to hear what you said as i thought i was just being a wimp! Lots of other people mainly in the hospital were saying that the more mobile you can be the quicker your recovery, so i felt i wasnt doing enough for myself..
I had keyhole surgery and am going back tomorrow morning to hear what y biopsy results are, so a very nervous evening ahead.
Oh and i meant to ask, did anyone else on here have to give themselves daily injections to thin the blood to avoid getting a blod clot? i have been told i have to use them for 1 month, i hate doing it and wondered if there may be a tablet form instead
Hey,
Best of luck for your results tomorrow, I remember all too well the feeling. I hope you get positive news 
Gentle walking helps, but only if you feel up to it. Don’t push it too far, you’ve had a big op plus the lymph nodes removed, so listen to your body in these early weeks.
Yep I had to inject myself for 25 days in the stomach. I’m not afraid of needles, but I did get sick of it. My abdomen was very swollen so it was hard to grab a fat bit, so occassionally i used the tops of my thighs. What helped me was to close my eyes and pretend someone else was doing it. Made it easier somehow.
Take care xxx
HI Jo
Just back from the hospital and got the great news that the biopsy results are all negative...Whoopy!!
so now i have to go back in 3months to have another check up, i dont know what happens after that..but want to say a big thank you for your support and really helpful advice, its really helped me..how are you doing now in your recovery journey?
xx
Congratulations that’s brilliant news!!
I’m at 8.5 weeks since the op and have improved a million times since the first few weeks. I’m still pretty limited in walking though and fatigue is a struggle. I watched a sport event yesterday…got a taxi there and sat all the way through and today I can barely get up I’m so exhausted! I think I’m pretty slow in recovering…but my nurse just said to relax and it’ll take a while.
Hope you’ve enjoyed celebrating this weekend!
Xx
Hi Thanks for that, no havent had a celebration yet..havent got the stamina yet!! waiting for a few more weeks to go by then we will be taking the roof off!
Sounds like your a much better place now in your recovery which is great to hear, i am still finding it hard to get a nights sleep as eveytime i turn over i am awake as i have to think about doing it gently, though it still feels like my insides are turning inside me..its horrible...how long does this last?
are you still taking pain relief, i am tring to cut down i didnt take any tramadol yesterday, scared i will get addicted to it...will be week 3tomorrow
and do you do any tum excercises..if so when did you start...hope you dont mind my asking, just feel unsure about what to do or expect since the op
xxx
Hi there,
I had to wait til week 3 for my results...so had some fizz with my parther after the good news! At week 6 i had a little party with friends. It was exhausting but they all brought food round so was lovely still.
I still wake in the night, it's difficult to turn like you say. I slept holding a pillow against me for 6 weeks! I'll be honest it hasn't got a great deal better yet for me, but I can move more comfortably than at first. I don't wake up with a numb bum as much now.
Pain killers - I took paracetemol and ibuprofen religiously until week 8, but just paracetemol now as the ibu has affected my stomach. I took tramadol as a top up when i needed for the first 3 weeks (usually at night to get to sleep). I'm not sure I'm ever out of pain though, but certainly at 6 weeks when I could have a bath I found it to get better.
Some days are good and my pelvic area feels ok, some days it's pretty raw still. So take your time, it will get better but it can't be rushed.
Excercise wise I haven't done a great deal other than trying to stretch and stand upright rather than hunched. My body hasn't felt ready for it and I didn't get any advice from the hospital :/
xxx
Hi Jo
I wanted to send you a message to say glad your feeling better than you did, sending you a MASSIVE E-hug xxx
Hi Jo i will have to try the pillow trick and see if that helps turn over at night, thanks for that.
I am taking paracetamol and ibuprofen four times a day, think the ibuprofen may be effecting mytum too, i take that mainly for the lower back pain and often in between the shoulder blades to during the day, not sure if this is because of the op or my bad posture!
I tried the bath the other night it really wore me out just the faffle of it, wont try it again for a while..i didnt get any advice from the hospital either, and really hard to get any now from the professionals i find...so much for aftercare..
Will keep taking it easy then, even though i feel a sloath
xx
Hi everyone
just wondered dos anyone else get the most awaful back pains everyday almost 4 weeks post op? thought it might be my posture or my sofa...but the only time i get rid of it is if lie down flat on my back...is it something to do with the surgery? anyone got any idea as to how long it lasts ot tips to help the pain?
thanks in advance xx
