Surgery. : Hey girls. My surgery has been... - Endometriosis UK

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Surgery.

Littleone88 profile image
36 Replies

Hey girls. My surgery has been booked now June 7th,

I’m so so so anxious and happy all rolled into one.

I’m worried about having the op done. And I’m also worried they won’t find anything. What’s the chance what they see in my overies isn’t endometriosis cysts as they suspected. Surely that’s slim?

What’s the recovery like? I’m unsure how long to book off work. Just completely freaking out xx

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Littleone88
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36 Replies
Blue1921 profile image
Blue1921

Hey! Good luck with your surgery and I hope you get the answers you need.I have my pre op next week and can’t wait to get an actual date.

My gynae said he usually gives you a sick note of up to 2 weeks?

I’m so anxious too, more that they won’t find anything xxx

Littleone88 profile image
Littleone88 in reply to Blue1921

Oh brilliant I didn’t no about the sick note that makes me happy. Yeah I’m worried they don’t find anything either and then will be sat wondering what on Earth is going on,

Good luck with yours also. I haven’t had a Pre op or anything yet they just called me and told me they have a date for me. And will send everything in post on what will happen etc. Covid test 3 days prior and isolation for me and everyone I live with.xx

Blue1921 profile image
Blue1921 in reply to Littleone88

Oh that’s really good! Mine is being done at a little private hospital as my Gp referral gave me the option of there or a local hospital. They won’t give me my date until I’ve had a pre op but said it will probably fall about 4 weeks after so I don’t know anything yet. He was really nice though and said they definitely give you a note for work which out my mind at rest. Have you been having problems for a long time? This is the first time someone’s listened to me so it gave me hope but I dread going back to the start if he doesn’t find anything. Xx

Littleone88 profile image
Littleone88 in reply to Blue1921

Oh that’s handy. 4 weeks isn’t to long it will come sooner than u think.

Yes the note puts my mind at rest also I have been worrying I’ll lose my job over it but my health needs to come

First either way. Yeah it’s been a while now, I had cysts found on my

Overies so they sent me for mri and they said there chocolate cysts caused by endo. My periods was so painful

Could barely walk. Felt sick body hurt all over leg pain all the way down was awful. But since being on the pill all my symptoms

Seemed to have calmed down a lot, besides the bloating. It’s horrible not being heard isn’t it. Xx

Blue1921 profile image
Blue1921 in reply to Littleone88

Oh bless you, well at least it seems like they’re getting you sorted. I’m on the mirena coil and it helped for a while but not anymore. Good luck again, hope it all goes well xx

Meworange profile image
Meworange in reply to Blue1921

Hi hun could I ask u are u paying for your treatment?

Blue1921 profile image
Blue1921 in reply to Meworange

Hi hun, I’m not no. My gynae referral from my go gave me the choice of a local nhs hospital or a private hospital that offers nhs funded. It’s all done under Ramsay health care if you wanted to see if there’s anything in your area x

Meworange profile image
Meworange in reply to Blue1921

Oh ok I didn't know u could do this did u have a wait list on the private hun? Iv just wrote my story down hun if u want to read really struggling with this endo now passed my patience now

Blue1921 profile image
Blue1921 in reply to Meworange

No wait list. It literally gave me the choice of that or my local hospital, they could see me sooner so I chose it xx

Corarrowsmith profile image
Corarrowsmith

Hi, I’ve got my first lap tomorrow. Feeling really nervous as never been put to sleep before too!!

Littleone88 profile image
Littleone88 in reply to Corarrowsmith

Oh bless ya. Fingers crossed for you. please let me know how u get on, being put to sleep isn’t as bad as I thought it would be, u lay down count to ten and ur gone in seconds honestly. U will be fine ❤️

635703 profile image
635703 in reply to Corarrowsmith

Bless you....deep breaths and this is all normal to feel this way. Just do one day at a time. They talk you through it all and when you go to hospital, tell them you feel anxious. They have anxious women there all the time. They will help you and I hope you get lots of loveliness there 💖💖💖💖💖💖💖💖💖💖💖💖

Hunter-23 profile image
Hunter-23

Hey, good luck!

I had my first lap on Tuesday, recovery is going OK but come across a few bumps. A couple of my incisions have opened up - nothing major but I've had them steri stripped and bandaged up. I can also feel the stitches beneath my skin which is frustrating.

I think I'll have to take another week off work as I can't sit comfortably in the chair properly (WFH) and still taking strong painkillers.

I was nervous about everything, the wait, going to sleep, waking up etc but honestly it was fine. I love the feeling of going to sleep and the anesthetist and nurses were all great, my husband wasn't allowed in obviously and they held my hand as I was wakening up.

I was worried they wouldn't find anything but they found Endo, I burst out crying and the nurse was great and totally understanding once she told me what they found.

It will be OK and good luck.

Littleone88 profile image
Littleone88 in reply to Hunter-23

Aw I’m so happy for u. It’s lovely reading positive story’s. That’s the biggest worry? Not finding it isn’t it ! I dread it.

Was yours quite bad then will u need another op to remove some?

I’m a Carer and do a lot of physical lifting etc etc so I’m wondering how long it’s gona take for tht.

Random question but I no they go thru the belly for keyhole but do u hurt on ur inside like down below ? Or bleed or anything? From down below?

Good luck with ur healing hope u have no more bumps down the road fingers crossed 🤞🏼

Hunter-23 profile image
Hunter-23 in reply to Littleone88

Yes, that was definitely my biggest worry - not finding anything and trying to get to the bottom of it.I haven't had a full report from the surgeon yet so I'm unsure the extent although the nurse said "superficial" plus bits inside adhered together.

Definitely no lifting for a while (but everyone is different).

I was on my period during surgery and I actually bled less than usual afterwards. My stomach hurts, and the wound in my belly button - its a vertical incision and it feels super tight underneath. I don't have any "pelvic pain" though, just the wound pain which is a bloody miracle because I've had pelvic pain for multiple years.

Thank you ❤️

willywalk profile image
willywalk

HiThat’s great news

Can you let me know where you are in the country?

Thanks

Clair

Littleone88 profile image
Littleone88 in reply to willywalk

Hello I’m in the UK’ Suffolk, and u?

willywalk profile image
willywalk in reply to Littleone88

HiI’m waiting for surgery at Colchester hospital.

Been waiting for ages

X

Littleone88 profile image
Littleone88 in reply to willywalk

Oh really? So I’m guessing ur on the waiting list already, how long has it been? Ring ur gyno and badger them see if it helps it’s horrible waiting isn’t it xx

Claircoops profile image
Claircoops in reply to Littleone88

hi,Yes been on for ages over a year but due to Covid. Have spoke to team and they have no idea on dates.Just all quite frustrating. I'm having a joint procedure as i may have endometriosis on my bowel.

Glad you are having your surgery,good luck and be kind to yourself and not rush.

It took me about 2 weeks to get over mine.

xx

Meworange profile image
Meworange in reply to Littleone88

Hi hun how long was u on the waiting list for? And I live in the UK aswel my referral got messed around with, wasn't even referred on but the system had a key hole last September was told fir a referral found out in April never been referred aboustly shocking then after so many addimatin finally got referred on nd was seen within 2 month of time got a clinic appointment only was seen nd surgery planned need to see a bolw specialist aswel. But he said I can't give u a surgery date yet as the waiting list is very long which didn't really help as I'm.really struggling he told me to come of pain tablets as.they make it worse the endo bowl not sure wht I should do now . I'm on combine pills which started giving me server margins now he said he put me on mini pill which I will bleed from, again that's not gonna help my endo as my chocolate cyst gonna grow . I'm so confused nd not sure what I can do now fed up this like this for nearly 4 years now. I'm scared It's gone make my ovires fully nd tubes as I want children aswl😢😢😢

Blue1921 profile image
Blue1921 in reply to Meworange

I’d definitely have a look if any local private hospitals accept nhs referrals and chase chase chase, call every day if you have to. Xxx

Meworange profile image
Meworange in reply to Blue1921

Iv done tat hun keep getting told I'm.not the only one who has endo other ladies eating before me they just brush me off

Littleone88 profile image
Littleone88 in reply to Meworange

Aw bless ya 😞 sorry ur been kept waiting so long, hopefully ur overies will be ok, and u can still have baby’s. Try not to think bad stuff until ur had the op and no it all, they will be able to help. I take the pill everyday to stop my periods and I have had a lot less pain since, it’s in both my overies so the mri showed. Xx

Meworange profile image
Meworange in reply to Littleone88

Same on the pills I'm on the combined pill but ts not suiting me to good so don't know to start mini pill instead now progesterone only I think that works best for endometriosis which are u using?

Littleone88 profile image
Littleone88 in reply to Meworange

Ermm mine has both in , it’s called maexeni 30/150mg. It stops my periods completely. Which has made me feel a lot better. I tried having a break and only I couldn’t believe how poorly I was with it had to take the pill on day 2, couldn’t bare it. Such a horrible condition 😢 xxx

635703 profile image
635703

This is all very normal and you get your bag ready, nurture yourself as much as you can beforehand. Get a haircut and do pampering things beforehand. Get a great book for post op recovery or a great tv show to watch and have some meals you like in the freezer as it takes the pressure off you and everyone else.

Post lap recovery is uncomfortable as you’ll be sore inside and your shoulder blades might feel sore. This is because they pump you with air so the laparoscope or camera can look inside your womb/ovaries/tubes etc. It is like being winded but as you begin to move around it eases. For me it came in waves of easing off. You’ll probably be tired as you recover but that’s normal.

I went in as a day surgery and it was all over very quickly. In and out in a few hours.

I arrived and the nurses put me at ease, the Dr came to see me and put me at ease. I got into a gown and they took me to do anaesthetic and told me to count from 10 down and I fell asleep. Then woke up and the nurse was gently talking to me. I was tired and groggy, sore but not in massive pain. Then I was awake and feeling ready to go home to recover and was discharged with advice and a leaflet and medicine.

I took 3 weeks to recover but my employer was very understanding.

I hope that helps and DM me if you want to ask anything but it was in 2006/7 lol 😆 I think.

Sending love and good vibes 💖💖💖💖💖💖💖💖💖💖💖💖

Littleone88 profile image
Littleone88 in reply to 635703

Thank you so much 😊 ❤️

mumboss profile image
mumboss

Great that you’ve got your date. It’s perfectly normal to feel the way you do and my biggest worry was also that they wouldn’t find anything, none of my scans including mri showed anything but they did find and excuse endo in a few areas for me.For me I was very sore when I woke up but it was mostly when I moved, I was home the same day. Next day I was up & dressed, on the sofa but still up. Recovery 2-3 weeks, I was back to work within the 3rd week but I work from home and could take a break when needed.

It’s highly unlikely that the scan would be wrong.

Best of luck

(5 weeks post op for me) x

Littleone88 profile image
Littleone88 in reply to mumboss

Aww I’m glad u got answers and have recovered 💕

Oh that’s good. For some reason I thought I would be ok 2/3 days later 🤦🏻‍♀️

Thanks for replying 💕 xx

Beanie79 profile image
Beanie79

It is a totally normal feeling to feel they won't find anything, I think we live with these pains and symptoms so much we get use to it. When they do find something it's a release as you no longer feel as if you're making it up. I have surgery tomorrow and I'm nervous they won't find anything and this is my 6th laparoscopy, I'm still as nervous as I was the first time and I work in gynaecology so I know my surgeon and he knows my history which is a bonus...

Bluesea7 profile image
Bluesea7

If your having key hole surgery 2 weeks recovery should be ok , you might be in for one night or go home next day, all depends on how everything goes, making sure your your blood pressure is ok ect , hope all goes well for you dont worry to much . ❤

Jasmin24 profile image
Jasmin24

Good luck!Take each day as it comes, even after surgery. Everybody heals differently. You will know the length of time you need.

I know you are anxious, but but ask many questions as you like for your reassurance.

I will be having my 3rd op on the June 3rd.

But most of all, try an remain positive, I know its hard not knowing....

Take care, all the best! 😊

Littleone88 profile image
Littleone88 in reply to Jasmin24

Thank you ❤️ good luck on ur third, bless ya xx

st07 profile image
st07

Good luck with your surgery! I had mine last week, I was so worried about the procedure itself that I forgot to worry about whether they will find anything at all or not - first ever major procedure for me. I cope by being organised so I made myself a list of things to pack to hospital and also any medicines/aids to buy to help the recovery and researched every step of what to expect step by step in the hospital, I think it helped.

I’m currently slowly coming off painkillers, I don’t have pelvic pain but incision pain and sometimes things feel odd if I move quickly: some of my organs have been unstuck inside so I imagine they are moving in new ways and that’s what’s causing it. I didn’t have much bleeding down there after at all, but maybe it’s yet to come.

It’s a good advice to get some nice things done for yourself before hand: book a massage or a haircut, get some nice comfy pjs or nice looking oversized panties (you will need bigger panties for sure) - I made sure I do somethings to make me feel feminine after the surgery.

Hope it all goes well for you and even if they don’t find anything - it’s still a step closer to diagnosing what might be going on by eliminating it. Good luck 🤗

Littleone88 profile image
Littleone88 in reply to st07

Thank you for ur reply, very helpful tips.

And yes this is true if it’s not endo, it’s one step closer to finding what else it could be. ❤️

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