Day away from surgery!!!: Hi everyone, I... - Endometriosis UK

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Day away from surgery!!!

Consumer_researcher profile image

Hi everyone,

I’m a day away from surgery now for a diagnostic laparoscopy (Wednesday morning) and I’m starting to feel abit anxious, I think I’m just apprehensive.

I wondered if anyone has any last minute tips/ advice??

I have my list ready of things to pack for the hospital and I have bought in some things that you guys have recommended such as peppermint tea, lozenges for my throat, oatmeal.

I think my main two worries for on the day are:

- when the surgeon comes round to give the feedback of the op, that I’ll be tired or out of it and some remember what he says. I was thinking of asking him if I could record it on my phone perhaps I don’t know?

- I’m worried that they’re not going to find anything and whilst this would be a relief that it’s not endo, it means back to the drawing board?

The other thing is my period is due to start end of this week so how does that interfere if at all with the op and post of recovery pains etc??

If anyone has any thoughts pls let me know! #feelingnervy

😊

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13 Replies
Whoisthis profile image
Whoisthis

Hello! How exciting, it’s really weird isn’t it to want them to find something.

Are they going to excise the endometriosis if they do find it? Or just put a plan in place?

So for period pains, you’ll be taking pain killers maybe for the op recovery so take some extras and it’s actually good to get a period straight after, it gives you 3 clear weeks of recovery, rather than 2 weeks recovery period etc. So it maybe a good thing it’s due!

Good luck and let us know what they say

Consumer_researcher profile image
Consumer_researcher in reply to Whoisthis

Amazing, thank you for your reply!

It is indeed very strange going into surgery, with a heavy heart that they might not find anything 😂 But that’s where it’s up to now unfortunately.

That’s great advice re period and makes sense so that I then have a clear run of no period for a few weeks at least hopefully 🤞

Whoisthis profile image
Whoisthis in reply to Consumer_researcher

It’s very strange and I paid for mine during Covid, can you imagine I took the risk of 5k+ not knowing, I’m still in shock that they did find it!! I had to do a self referral as my GP and gyne didn’t believe me.

But thank god else I’d be sat here wondering what on earth all the pain was about.

Consumer_researcher profile image
Consumer_researcher in reply to Whoisthis

Morning,

Just wanted to let people know that I had my surgery yesterday. Currently awake in bed back home but in awful pain, about to put some Netflix on to distract me.

So, I was at the hospital for 7:30 yesterday morning. Had to get up at 5am as needed to shower and it was over an hour away. When I arrived at the hospital, I was told I was first in so things progressed pretty quickly - met my nurse, got into the gown etc and then the Drs, anaesthetist and my Consultant doing the Op came round. I then went down to theatre about 9 ish and then next thing I remember is waking up in recovery (I was totally out of it and couldn’t keep my eyes open). Then got wheeled back to the ward and checked the clock, 12:15!

I was very prepared prior to the op, I took my endo file with me that I’d collated 😂 and had questions ready to ask everyone - I had it confirmed and then triple checked that they were not putting the coil in as I had since changed my mind after the experience of the implant. I also got them to confirm (which was then signed on the consent form) that any endo found would be excised.

So, the afternoon was resting, in a tremendous amount of pain - both from the op and the gas (although abit in my shoulders, it is all mainly in my rib cage so finding it difficult to breathe and makes me cry which hurts more!).

The nurses were lovely, and said I needed to eat and pass urine before being discharged. Originally, they thought I’d be out about 2 ish, but I didn’t leave til about 6 ish as I couldn’t pass urine for a while. Walking to the toilet for the first time made my BP drop rapidly and I felt very ill but that settled soon after. I then had cystitis like symptoms where I was desperate to wee but couldn’t go - they said that I needed to wee before home but that it wasn’t uncommon as I had had a catheter put in and out during start of surgery so that could explain these feelings of cystitis.

I was desperate to know how the op had gone, I asked a few times but then later in the afternoon the nurse explained that the surgeon wouldn’t be coming round after all as they were in surgery with someone else. She said she would explain to me - I started to get abit edgy as it was getting to 4/ 5 ish and I’d heard nothing, I then pushed for her to explain as I said I just need to know!!

But - after a lot of info, a lot of questions from me and all the discharge information including the injections I needed to take over the next week and codeine to take home - she explained that they had found endometriosis!!! I couldn’t believe it, my mind actually read “no endo found” as that’s what I was so worried would happen. But no, they discovered endo in a few areas and removed.

A relief....still hasn’t quite sunk in yet. Obviously I have a lot of questions but they have to wait until I can speak to me surgeon in 3 months!!! — seems a very long follow up! Anyone else’s thing long??

After this news, I had more to drink and finally managed to pass urine so they said to call my lift. The car journey was horrible as we had it make an emergency stop at a services as the cystitis pain and symptoms were pressing heavily on my bladder and I had to walk into the services in tears and my slippers 😂 my boyfriend was amazing though and helped me the whole way!

Arrived home about 8pm ish - very long day! My partner has been amazing and looked after me and told me not to do a thing!! He made me some food but I managed a little bit of it.

Woke a few time’s in the night and cystitis symptoms still there - lets see what today brings! Woke up and in a lot of pain, so sat in bed again after my partner made me a tea and got me the TV set up. Just going to try and rest, keen to change my knickers and freshen up abit at some point but will have to get him to give me a hand with that as everything hurts!!!

Sorry for such a lengthy read - I just thought some detail may offer anyone about to go for their op some insight!

Much love 💓

Whoisthis profile image
Whoisthis in reply to Consumer_researcher

Amazing news, I think!! Yeh cystitis pain needs to be kept noted is you still have it tomorrow give your GP a call it’s very very common to get a urine infection after a catheter is in place, it could be bruising, but they can give you some antibiotics, don’t leave it to hurt too much.

What pain relief do you have?

I’d actually ask a family member to call the surgeons office and ask for notes and when the pathology report will be back, 3 months is not an acceptable timeframe to wait, you have not idea what you are recovering from!! So if the did excision surgery from the bladder wall that will explain something of the bladder burning, you really need to know what they did in order to have enough pain relief for the weeks needed.

Excision has a much longer recovery time than ablation surgery so make sure your GP gives you morphine at the very least for the night times to sleep, don’t listen to nonsense about it being addictive, it’s amazing at taking away pain and allowing your body to rest but nobody in their right mind would want to feel that out of it permanently!!

GPS dislike giving morphine, but you can ask for it, and I’d say you sound like you could do with something stronger!

Consumer_researcher profile image
Consumer_researcher in reply to Whoisthis

Sorry for the late reply to this. It’s been a painful few days! The cystitis feeing has eased a lot which is good so I think it was as the nurse explained - just the sensation from the catheter being in.

They gave me codeine of which I’ve taken and had some this morning and last night I was allowed to shower and took my dressings off - but that took it out of me and I woke up this morning in quite abit if pain and discomfort.

Resting again today - combining with ibroprufen and paracetamol. Drinking peppermint tea still and lots of water, juice and tea and throat sweets.

Started bleeding today - albeit very dark brown discharge. They said to expect that, but also period is due next few days anyway.

Thanks for all the support 😊

Whoisthis profile image
Whoisthis in reply to Consumer_researcher

Bless you I promise it does ease up over time just rest try not to do too much and keep those heat pads on you, that’s great relief for pain.

plotments profile image
plotments

Good luck I hope all goes well for you

Think that it would be a good idea to record conversation if surgeon agrees... you will be very drowsy after op and nothing will stay in your head in the right order!!!

Take care xxx

I think it’s very natural to worry that they won’t find anything. I actually convinced myself that they wouldn’t find anything in the end but they did. It’s almost a massive sense of relief as you can finally get that answer that we all have fight for (not that we want it but it stops us going insane! Lol). It’s such a bitter sweet moment. And if you don’t have it then what a relief And hopefully they can give you answers from your surgery, but they wouldn’t do the surgery if they didn’t think you had it too.

To your other worry - I was fairly awake and completely with it afterwards so I wouldn’t worry. I remember literally everything following my surgery from the moment I woke up. You’ll also get a follow up appointment too so they can answer any questions you might have then too.

My surgeon actually left and didn’t tell me anything following surgery which was pretty poor, she just booked me in for a 3 month follow up. The staff in the recovery room told me they found some endo and that’s all I had for a couple of days until I hounded the consultant and got her to call me.

The only other things I would advise... a nightie to go home in and for the few days after, someone at home to help you stand and sit down, someone to help you shower and get dressed, and even though you will feel very mobile when you are on your feet, remember to rest and let your body recover.

The second week you should feel very able and good to do things by yourself.

Peppermint tea helps with the gas they put inside you. Magazine or puzzle book whilst you are in hospital waiting. And they will likely tell you to take slippers too.

Goodluck! Hope you get some answers xxxx

AllthatGlitters profile image
AllthatGlitters

I hope your operation went well. You can give us an update maybe once you feel upto it? Hope you got all the answers you were looking for x

Thank you guys for the advice and replies! Really appreciated 🙏 I am feeling pretty prepared now - bag is packed for tomorrow and a 6am set off to the hospital to be there for 7:30! So an early one 😂 Feeling positive! 🤞❤️

ChloeL934 profile image
ChloeL934

Good luck & I hope everything goes well and you get the answers you are looking for x

I would think of it as an exciting opportunity to finally be believed it regardless.

I remembered everything they wait until you recover and then explain but no harm in asking. I know I couldn't take pics of my own medical findings but you can ask for a report either gp or hospital.

After op REST even if you think the pain is wearing off they love to dose you up and you get home and think your invincible 🤣 what ever they tell you 2 weeks a month some longer don't push yourself too much!

Lots of peppermint oil/tea or ask for some laxido just to help with bowels after. I wish I'd had taken something the day after because I got severely constipated (TMI) but true! I wish I'd of eaten little and often instead of stuffing my face 🤣🤣

But good luck dont be scared it's not too long of a procedure! 🤞 they get to the bottom of it and bring the tissues incase! I was crying with relief when I got told endo and adhesions and it wasn't in my head after so many years! X

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