Open surgary worries

Women's health
1

Hi,

I am having open surgary in the 2nd or 3rd week of April to remove my 11cm cyst and my ovary. I'm only 23 and cancer team are involved as my ct or MRI scan is not clear enough for anyone to say it's not cancerous or not. My cyst is fluid and solid filled. 

All bloods are normal which is good. 

I'm worried about the pain after the op, When i wake up and after that. 

I'm worried about after the op getting myself to the loo 

What is the amount of days of staying in hosptail ? (Roughly) 

I struggle with hosptails 

I'm worried how I'll cope once home as it will just be me at home

I'm just really worried about the whole thing really. And anyone's experience would be amazing. 

2

Are you having Open surgery? 

3

Yes I am 

4

Ok. I had I open surgery. I hate hospitals probably more than you but trust me, you will ant to stay as long as you can. 

I was in a lot of pain - to get up and get back into bed is really difficult and the electric beds that automatically lift you up are are a huge help!! 

They will get you up same day of surgery to walk around which I thought was going to be almost impossible. The more you walk the better. 

They will not let you go home till you have had a bowel movement which is really difficult. 

If you live on your own you should arrange to have someone stay with you the first couple of days. Again, getting up is really hard, you will need help! (Stairs were no problem at all) 

5

How long did you stay?  What is the rough amount of time I'll stay? 

Do the nurses help you get up and about? I have a massive worry that I'm not going to be able to get myself to the loo and walk around. And massive worry the nurses will just leave me to get up myself as I'm 23 years old. 

What pain meds did you get once you woke up?  And what were you discharged home with? 

Why won't they let me home until I have had a bowel movement? Sorry probs a silly question. 

What about eating and drinking? How was that? Did you feel hungry after the op and feel able to eat? 

What kind of things would I struggle at home with? I haven't got anyone who can stay with me. X

6

Hi 

I stayed in 2 nights.

The nurses are great an no one is going to leave you in your own. It’s their job to help you and there was a ton of staff to help. That is the last thing you need to be worrying about. You only will need help getting in and out of the bed, you’ll be fine to walk to the washroom in your own. 

For when I got home, I bought a body pillow from Walmart that was great. I could not sit at all! Had to lie flat on my back with my legs elevated so used the pillow for that and it helped to use it getting in and out of bed. 

Also cause I couldn’t move in bed - I used straws to drink everything. Without a straw it was hard so buy a box of those as well! 

Coming out of surgery, I woke up with a moraphine drip and they will ask you as soon as you are awake if you need more pain meds. They were great at managing the pain. I went home with a prescription (have it filled in the hospital before you leave) My advice is take all the meds they give you when you go home - do not stop taking them or the pain will get ahead of you. I made that mistake thinking Tylenol would be enough and it was awful! I had to get back on them. The medicine will make you really constipated. Buy prune juice and Senakot for at home when you get back from the hospital. 

The day of the surgery I was not hungry, just had liquids but was starving the next day. I had no nausea and could eat anything. (Tell the anesthesiologist to give you something for the nausea)

 Just make sure your house is well stocked with things that are easy to cook cause you won’t be able to go shopping. Soups, toasts, fruit, juices etc....I would get some prepared foods and freeze them as well. You can not lift anything for 8 weeks - I was longer so if you are in your own you will need to have your food stocked ahead.

FYI - It’s standard for any operation to not leave before you have a bowel movement- it just lets them know everything is back to working as it should. 

Hope that helps! 

7

Hi Holly I had hysterectomy I'm 54 years old and pain was managed well in hospital you will on be hospital 2-3 days I would imagine I also had a cyst which was fluid filled cancer team looked at my scans and decided not to get involved if your bloods wrre clear that is a good sign everything that was removed was tested and all was clear good luck xx

8

Hey Sharon, 

Thanks for your reply! 

My cyst is fluid and soild filled and sadly the cancer team have been looking at my scans are they are unable to make there descion if it's cancerous or not as my scans haven't been clear so the cancer team are still involved but they are happy for my local hosptail to carry out the operation but I'm having my current consultant and another consultant surgeon in the operation and I believe that this 2nd person is something to do with cancer team or something. 

All my bloods clear including tumor markers just scans are not clear 😞 

I'm hoping it doesn't come back as cancer as I'm only 23! 

9

Hi Jackie, 

Thanks for your reply! I'll expect to stay roughly the same then. 

Thank you- sorry I worry easily about things. 

What kind of pillow?? 

I'll defo be buying straws then! Thanks! 

I had bunion surgary 2 and half years ago and that I woke up in so much pain (which I shouldn't of had as had injections in ankles to prevent pain for 24 hours but didn't work on 1 foot) 

Pain isn't something I deal with that well at all. 

I was thinking of the week before to make up food and freeze them. Il make sure I do a food shop week before then. 

Why won't I be able to pick anything up? 

I have made a list of questions for my consultant when I see him Tuesday and pain meds is one question. 

Thank you so much! It's all really helped! 

10

It’s a “body” pillow. They are long and norrow. (The length of your body) 

Any bed shop will have them. 

You can’t lift anything as they have to cut they the muscle tissue (very similar to a C - section) this you are not allowed to lift anything. You will feel it if you do. 

11

Okay I'll look into that pillow. 

And ooo right that makes sense. 

12

Wait please for the histology report before worrying of the make-up of solid part of cyst.

I was told at 29,

that my solid growth within 9cm fluid cyst looked like cancer as imaging didn't fit any benign growth, 

and it was a benign, totally benign teratoma still at the end, histological end.

13

HI there Holly 

Sorry you are worrying about your upcoming surgery, I could say what everyone says but you will worry, it’s only natural especially as you have the extra concern that your consultant doesn’t actually know what is going on until they get in there. I had open surgery last year so with very similar circumstances so was also under an oncologist. My bloods were ok so I trusted my gut instinct and went with a partial removal rather than the preferred hysterectomy, was 44 at the time but still not ready for surgical menopause! 

Pain following your op relies on where you are based (country) and what pain relief you are offered and opt for. I had a spinal anaesthetic, 2 morphine lines each side of my abdomen and a patient controlled morphine device which I used for 24 hours. Don’t be surprised if you itch whilst on morphine, it’s common. 

Once I’d discovered the end of my bed moved to I could raise the bottom and it stopped me slipping down the bed, if your tall it’s not to bad but I’m 5ft. 

If you can take your own pillows it will help, I used my dressing gown rolled up to support my head while trying to sleep, I’m a tummy sleeper usually so getting comfy was difficult. 

The best advice I can give is while your on morphine your pain may be minimal and your appetite great! Don’t be fooled! I ate so well but really suffered with gas pain, the key is to eat well, whilst it’s tempting to have your comfort food and puddings, think about the end result! drink plenty and move as soon as is possible to get that trapped wind moving. I ended up having to have what I called my windy cocktail, paracetamol and peppermint in boiled water, it’s fab! But wished I hadn’t got to that stage. Leaning over the bed or chairs in the day room helped loads. 

Take it easy when your home and try and sort how your going to sleep once your home, you may have to forgo your bed for a few weeks! Depending on where your cut ends up being will depend how well you can manoeuvre. I had a vertical cut from bottom of rib cage to pubic line, my other op was a bakini cut and my range of movement was completely different, couldn’t lift legs up to get pants or socks on! This time I could by dangling them and putting my leg up to one side. 

Buy big big pants, like 3 sizes to big, your tummy will be bloated for a while and you don’t want a tight band across or sitting on your wound. Same goes for nightwear, I bought  nighties bigger than usual size but didn’t think about the length! I ended up flashing to my bed neighbour every time I got in and out of bed. Try and go home in maternity leggings, they were a god send to me, I wished I’d bought them earlier, I ended up going home in a nightie, socks, slippers and a scarf wrapped around me (in January) Dh Fitbit to bring my coat back to hospital! 

Try and station yourself close to the loo, if your put on antibiotics they may upset your tummy and you probably won’t be up to sprinting to get to it. 

Take it easy once your home but do try and move around, I found the best time was just after taking some pain relief. 

Don’t put to much pressure on yourself to go to the loo, your bowel won’t like being disturbed during surgery and the cocktail of drugs won’t help but it’s normal to have been before you leave hospital and you won’t be kept in because of it, just be honest with the nurses. I think nature intends us to be home in our own surroundings before you get to this milestone! As long as your having no. 1’s then don’t fret. 

Invest in a side table for home so you can have your water, pain relief at easy reach. 

Please please make sure you take it easy leading up to your op as well, I had 4 days notice and I was totally exhausted before the op, this didn’t bode well for me and my body didn’t behave in the way it should have because I was to dehydrated.

Wishing you all the best, I kept a diary after my op so feel free to ask if you need anymore info. Remember everyone’s surgery is different so don’t worry yourself more you comparing!

Finally I’d like to let you know that my biopsies came back normal so no ovarian cancer for me. Trust your blood results, your body, and your instinct. 

Good luck. X 

14

All my bloods including tumor markers are normal which is good and on scan doesn't show any issue anywhere else which the cancer team are resured with my bloods and the rest of my inside. 

Just a worry! 

15

Hi , 

Thanks for the reply. 

They know it's a cyst but at the moment that's it. It's the soild part but the cancer team are resured that all bloods and tumor markers are all normal and on scans the rest of my pelvis, tummy and all my organs are fine and normal. 

They are only taking the cyst and my right overy- my consultant at first wanted to do key hole but that means popping thencyst and because they can't tell by scans it's not safe enough for them to go and pop it so it will be removed as whole. 

I am in the U.K.- where are you based? I've had morphine when I had bunion surgery about 2 and half years ago and when my cyst twisted start of January (thats when I found out I had it) 

Lucky I'm only 5ft too! I sleep on my side and tummy so this is going to be hard! 

What are the best things to eat then afterwards? 

I'm not sure whet cut they are doing at all. I really don't know how I going to cope afterwards. 

Lucky enough mainly my underwear is a bit bigger anyway - I think my pjs might be to tight around wasit so think I may need to re thihk That. 

I'll probs live in pjs ect anyway. 

I live in a house so I might have to stay upstairs just incase in regarding to the loo situation. 

What pain meds were you discharged with? 

Thank you so much for all your advice and help! 

I am seeing my consultant tomorrow to talk through the operation so I'll see what he says then. 

Was yours fluid and soild?? I'm so glad yours came back normal!!

I'm trying not to worry x 

16

Stop worrying about it being cancerous you’re going to drive yourself crazy. The dr should know by visually looking at it after he removes it. Then they always send it for a biopsy which takes usually 8 to 10 days.  I immediately felt relief after the surgery as I was in a lot of pain until they took it out.  I spent 2 days in the hospital. It will probably take 3 weeks until you feel normal again.

17

I'm trying not too! 

What pain refelif were you on after the op?? 

18

Hi

Please be assured that yes you will be asked if you’ve “been” but if you haven’t then they do let you home! As long as all your other observations are good temperature, BP and urine output is good then you’ll be fine, both myself and another lady were allowed home, it’s quite normal for you to be sluggish, just be honest with yourself and the nurses. 

Don’t worry about your age and being left, you will get a visit from possibly 2 physiotherapists and they will help you out of bed, not sure all trusts (I’m East Midlands) do this but if not then it will be a nurse. You’ll have a buzzer, don’t be afraid to use it. Like I said earlier your surgery will be different from the next lady to you so your needs should be met accordingly. They usually get you out of bed next day or so, depending on if your feeling ok after your surgery, if your feeling light headed or similar they’re not going to rush you.  It feels incredibly liberating to be up out of bed, that first wash and brushing of teeth is great, tiring but great! 

You don’t need to eat anything special after your op just eat  your fruit and veg, save the stodgy things for home! If you find yourself feeling sick, don’t sit it out worrying, the nurses can give you an anti sickness tablet. 

While your home waiting for surgery it may be worth just thinking about what you have to stretch for, I couldn’t reach things out of the cupboards, close the blind behind the sink. My husband used to fill the kettle for me before he left for work but the first day I couldn’t lift it because it was to full!  Luckily he came home at lunchtime. 

If your a breakfast person then I found something like a sultana bran or fruit & fibre with a glass of orange juice set me up well and helped things get going, apologies for the mentioning of it again but I know it is probably one of the top things women worry about especially after abdominal surgery. 

My cyst was 9cms on the scan and was reported as “being nasty” it had solid areas, can’t remember the wording but I had no other symptoms other than pain, when I was cut they discovered a smaller cyst behind it, I think it is fairly difficult for them to distinguish from scans so going for open surgery is their preferred entrance. Just a thought, if your cyst twisted then maybe what they can see as solid areas is possibly scar tissue? I had lots of adhesions and I guess that is what made my cyst look suspicious on the scans.

They may start off laparoscopicly and see what they are dealing with. They usually like to get the cyst out as a whole if they don’t know what type of cyst it is. Mine have all been benign fluid filled. 

My pain relief on discharge was just ibuprofen and paracetamol, but previous surgeries I had antibiotics. While I was in hospital I had morphine, paracetamol, ibuprofen, stool softener (can’t remember name, think was dulaxatine) and a daily blood thinning injection, ( standard for surgery, you may have to continue at home with injections but I got away with it, not sure if it was because I was fairly mobile around the ward) 

If you lose a lot of blood be prepared to feel really tired, just listen to your body and don’t push yourself, otherwise youll put yourself backwards. 

If you’ve got visitors coming in daily, lean on them and let them help, making you a sandwich before they leave and putting in the fridge, getting you a meal out the freezer to defrost. My fridge is an under work surface one and I struggled to get in it, not literally 😄 I had to squat and feel my way around the shelves. 

Try and take your showers when somebody is there, you’ll be surprised how much you’ll doubt your steadiness for the first few days. Again it all depends on what type of cut you end up having. I had my 4th abdominal surgery last year and they have all been different. This time they took my ovary, Fallopian tube, and had adhesions removed. I had 12 weeks off work, recovery did seem to take longer this time round but I’m now cyst and pain free! Long may it continue 🤞

Ask as many questions as you like, it’s your body. Some people like to brush it all to one side and take what comes, others want answers to every possible scenario, both are good, just don’t be afraid to ask. 

Hope I’ve answered all your questions so far. Hope it goes well at your appointment today. Best wishes x 

19

Just noticed you’ve asked about length of stay in hospital. Open surgery is usually 3/4 days, (keyhole is around 24 hours)

Discharge will really depend on how your feeling and what support you have once your home. You will see improvements every day, they may only be small ones but they will be there so go with the flow and I can’t stress enough ask whatever is on your mind. I ended up worrying about possibly having a hernia because my tummy was a funny shape! Silly when I think about it now but I thought if I asked about it then they would keep me in longer! The Drs were checking me everyday and it’s crazy now to think they wouldn’t have noticed it but in my head it was a genuine concern. I plucked up the courage to ask eventually and it was just where my stitches had started and post surgery swelling  🤣. Hospital life, medication and emotions tend to play tricks on us. 

Another thing I thought of is perhaps getting your shopping delivered for a few weeks after your op, some slots are fairly cheap and it will be money well worth spent, it’s kind of like getting your independence back too. Just don’t go for the bagless option, I thought saving the environment was the right thing to do but having big plastic baskets to empty had me realising I’d made a huge mistake. Thankfully my daughter was home and the delivery man was happy to help too once I’d explained I’d had surgery. 🤦🏻‍♀️

20

Good.

Tumor markers can be up into 100 times higher, if inflammation is happening.

Tumor markers (CA125, HE4) in blood are a good base line or for monitoring, but not a 100% sensitive or specific test at all.

Good that yours were in normal range to start with.

If they were positive, it would still not say, that it was cancer at all.

If they are negative, is not a 100% exclusion tool either.

It's just one puzzle piece and if it fit, is to decide later, after removal and work-up and monitoring.

Histology of removed mass (not biopsy, the whole tumor will be processed into slices and looked at from left to right, to see the edges, not just a snippet)

is the only way to find out what it is made of.

Even the naked eye can't do that, especially can't do grading or classification, unless it is obviously a teratoma with hair and teeth grinning at one. 

It will be fine.

Not knowing is much worse.