Surgery coming up, any advice please!? - Endometriosis UK

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Surgery coming up, any advice please!?

Nats31 profile image
Nats31

Good morning

I've been diagnosed with stage 4 endo and I have a 10cm endometrioma growing on my left side ovary that has been crippling me for months.

I'm not familiar with the surgical terms, I do know the Dr's have said that I'll have laproscopic surgery and they will be removing the endometrioma and my left ovary and tube.

Could anyone advise on recovery time. What you took with to hospital. Did you bleed afterwards? If so for how long? I'm booked in from 15 June, pre op 20 June then op 21 June. Longest time I'll ever be away from my kids 😕

Tia

20 Replies
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Sorry to hear of your pain. For me it took at least 2 weeks before I would have classed myself as work ready, everyone is different however. Sounds like you are getting alot done during surgery so allow yourself as much time as possible. It's better take the recovery slow as if you rush getting back to normal, it can be tougher in the long run. Just remember that every day is a day of healing. Bleeding afterwards can be like a period but again every one is different.Peppermint tea for shoulder pain can help, plenty of comfy pjs and rest.

Hope that is some help. Hope it goes ok for you.

🙂

Nats31 profile image
Nats31 in reply to Hidden

Hey!Thank you so much for your reply! I'm hopeful that I'll be able to take the actual tune needed to recover and rest.

I've got a good supply of peppermint tea on standby 🙌🏻

Heya,

I have stage 4 and also had a 10cm cyst removed from my left ovary. I didn’t have my ovary or tube removed but it took me about 2 weeks to feel more normal, but I still lacked in energy for at least another week. I remember taking my daughter to the park and thinking I was fine, and then could barely push the buggy home after! Pain wise, the shoulder pain was awful immediately after, but went after a couple of days. I felt really tired for a good few days afterwards too and just needed to sleep a lot. I found that the first period after was really awful, and I wasn’t fully prepared! I ended up having to take really strong painkillers and was glued to a hot water bottle which then made one of my incisions infected, which I had to get antibiotics for. I was told I might need to stay in over night so just make sure you pack a few things for that in case. They put a sanitary pad underneath you as there is a bit of blood after surgery. I think I wore pads for a few days after at least - I can’t really remember though! I took some really comfy dungarees to wear home as I didn’t want any waistbands around my tummy. I hope it all goes well for you. Not having the stabbing pain everyday in my left side has been so nice! All the best x

Nats31 profile image
Nats31 in reply to Roobs33

Hey!Thanks so much for your reply! I'll definitely be weary of the hot water bottle, I usually have it glued to my side these days. I'm so glad you've recovered well! X

notes in case

I am not sure what my stage was (diagnosed during surgery, still awaiting a follow up), but based on the discharge notes I was given it was a 3 or 4, but feel like my surgery was a little easier than yours. I am three weeks today after surgery and I still get some waves of extreme tiredness, just s someone above mentioned: I would go for a walk and get tired 5min in dying for a lie-down! I was told since I work at home in front of a computer I should be ok to return a week after surgery but was given a 4 week note and I think I will use all the 4 weeks to be honest just to be sure. I have also just developed an infection in one of the incision points so that is contributing to feeling worse off than even a week after surgery.

Nats31 profile image
Nats31 in reply to st07

Oh no! I'm so sorry to hear about your incision getting infected!! I hope you heal up soon and feel better! X Thank you for your reply

st07 profile image
st07 in reply to Nats31

Thank you I hope so too, apparently, it is something to watch out for, the same way as deep vein thrombosis.

I realised I have skipped another part of your question about what to pack, I found it very difficult to compile information about it so here is what I did:

- As someone mentioned above: be aware in rare cases you might have to stay overnight (I nearly did), so pack some stuff you'd usually take overnight with you

- A water bottle: I was looked after well and frequently but if you want to sip on water (and you need to) then always good to have it on hand.

- Comfy clothes for the way back (no waist!) and warm socks for when you are in the hospital, they always say it is important to make sure your legs and feet are warm (I think it is to avoid dvt)

- A pillow for your drive back: you cannot drive yourself and assuming you will be returning in a car it is good to have something to put between you and the seat belt as it will press on your wounds

- peppermint tea: the have offered me some at the hospital but in case they don't it's good to have it, it might help with the gas pain and digestion, so even if you don't use it in the hospital it will come in handy in the coming weeks

- earplugs and eyemask - hospitals can be loud and you might want to use it to get some rest

- big panties, I got some 2 sizes up with a high waist (M&S got good packs and they call them full briefs), you will be given ones to wear pre surgery, but you will need some at home anyway, your belly will be very bloated for some time and you won't want anything to press on it

- power bank / phone charger with a long cable - in case you need to charge your phone, the sockets are quite far away from the bed

- headphones if you want to watch something when you wait for the surgery or when recovering (I did not have time before and did not want to watch anything after tbh..)

- big sanitary pads - lots of people say get some as the hospital ones are huge, but tbh I did not bleed after, I know some people do

- I bought a microwaveable heat pad for the gas pain and it was very helpful but could not keep it on my back so I also got some heat patches that can stick on your skin/clothes to help with gas pain and these were great

- make sure you have clothes at home without waist that you can wear and sleep in

- make sure you have plenty of pillows ready at home, you will want to sleep somewhat elevated due to gas

When it comes to medication I have bought a bunch of stuff thinking better safe than sorry:

- standard paracetamol, ibuprofen for managing pain when you are back home, + co-codamol for the first few days after if you need it. I was not given anything else on discharge as they said this should be enough and it was. Beware, you cannot buy much paracetamol and co-codamol at the same time so you might need to make a few trips to the pharmacy

- stool softener: going to toilet will be a bit of a hell right after and painkillers make you constipated so it will come handy, I bought dulcolax and started taking it at the hospital

- peppermint tablets for the wind and digestion - I got colpermin

- arnica tablets and arnica oil, tablets are apparently alternative to painkillers (started taking them right after surgery) and oil is for the scars, but only started using it maybe 2 weeks after

- I started taking probiotic and general vitamins to prepare for the surgery to make sure I am in as best shape as possible and keep taking after

- I would also recommend asking your anaesthetist for medication to help with sickness if your drive home is quite long, this worried me a lot as I feel sick lots with endo so they gave me something for the road

- also if you are afraid of the surgery itself, you can speak to your anaesthetist on the day and ask for a numbing cream for the hand where they are gonna put the cannula and also for something to make you a bit more relaxed (I think they can give some kind of diazepam), I asked for it but in the end had no time for the numbing cream and did not need the diazepam but if you are very stressed about this - good to know it's an option

Not sure if this might come across as too much, but I like to be prepared and to be fair I have used all the things I have bought and also it gave me peace of mind knowing I am as ready as I can be.

Nats31 profile image
Nats31 in reply to st07

This was so very helpful!! Thank you so much! I've made a note of everything you've listed. Much appreciated!! Xx

st07 profile image
st07 in reply to Nats31

No problem at all, good luck with your surgery and hope everything goes very well 🤗

Hi I had the same but when they went in I had a lot of complications, therefore it took 3-4 weeks for me to get back to normal

Thank you for your reply! I'm estimating a 3-4 weeks recovery time based on all the replies x

I also had stage 4 endo with an endometrioma.

I went private and came out of hospital late the same night which was a mistake! Don’t rush home. It took me longer to recover than I expected - I couldn’t walk properly for a week after surgery so don’t underestimate it. Give yourself 2 weeks for sure :-)

I recommend baggy T-shirt dress/nighty you don’t want anything around your waist after. Also I had a load of morphine and codeine which left me super constipated. Stock up on fig syrup or prune juice and take it around the clock if your taking codeine. Also mint teas! Also get a load of pads and panty liners as the bleeding and spotting can be unpredictable I needed a liner on everyday for a while after. Just having all these things ready at home makes it easier.

After surgery I really struggled with peeing but that’s normal so don’t worry. Try your best to not get constipated as it’s not fun.

Good luck with your surgery I hope you feel much better afterwards! Xx

Nats31 profile image
Nats31 in reply to Jayne_Fairy

Hey Thank you so much for your reply!

I've definitely stocked up on pads in preparation. I wasn't even sure if there would be any bleeding or not. I'm in South Africa so I haven't even been told what's what from my Dr's. I was just given my date and told to be there 😕

I'll keep the prune juice in mind thank you so much!

Why did you struggle with peeing if I may ask? Was it directly related to the surgery?

Jayne_Fairy profile image
Jayne_Fairy in reply to Nats31

Of course if you have any other questions feel free to message me. I had literally zero support beforehand and even now afterwards haha - have booked to see my GP next week and try get an NHS referral to discuss any ongoing things.

I believe struggling to pee after surgery in general is common side effect from anaesthesics. Particularly after gynae lap it’s a problem - they make you stay in hospital until they now you have/can pee ok. On my first go the nurse had to help me onto the toilet and I couldn’t pee. I tried a few hours later and tiny dribbles came out. It felt super uncomfortable and weird. Eventually I managed a few more dribbles and they said that was ok. Late that night I wanted to come home so was allowed but was in lots of pain and peeing was so hard! I actually woke up multiple times in the night to go for a pee and the next night. I would also sit on the toilet for ages trying to squeeze a wee out, then brush my teeth get into bed and have to go back and wee again! I’m still struggling a little with my bladder I find being bloated makes me need to wee more too. Nobody told me about peeing problems whoops! You also have to drink LOADS of water after surgery so that contributes to needing to go.

Nats31 profile image
Nats31 in reply to Jayne_Fairy

Acouple of years ago I had an emergency c-section and then also surgery to remove my gallbladder, and both times I had a catheter inserted, I recall having to make a wee wasn't the most enjoyable experience then. Perhaps it comes down to the catheter then. I'll definitely take in a good few bottles of water with me xx

As per bleeding when I woke up from surgery I had a nappy type thing on with what felt like a heavy period. I also didn’t realise this would happen! I then had to wear pads that night and liners everyday after as you can get spotting. The first period after the surgery is very heavy and painful - similar symptoms to endo / endometrioma I would say xx

Nats31 profile image
Nats31 in reply to Jayne_Fairy

Can't say I'm looking forward to this part 😬

Don’t worry you will get through it! Us endo suffers know how to tolerate pain and battle through 💪🏼 Good luck with your surgery and I’m sure you will be feeling at ease once you have had it :-)

Nats31 profile image
Nats31 in reply to Jayne_Fairy

Thank you so much!! 💕

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