Finally! I have my lap on Tuesday :)

[asoullessstatic]

So, after well over a year of waiting, I am having my diagnostic lap on Tuesday!

I didn't get much notice (about a week) so I think I got a cancellation.

After such a long, long path just to get this far, I'm kinda nervious and feeling a bit like a deer in the headlights.

I've been given little information, just to turn upto to the day surgery ward on Tuesday morning. I'm assuming it will be diagnostic in nature rather than doing anything.

Big thanks to everyone whos listened to my rambles over the last year, while I got given pretty much no information, what did you take into hospital with you, or what had you wished you'd taken in?

[Afrohair]

I can understand you would be happy for a diagnostic but wouldn’t you want to ask more questions regarding the lap like if they find it will they will get rid of the endo as it’s highly likely they will open you up have a look and sew you back up if it’s just diagnostic and you will still be in pain I don’t want to burst your excitement as you would be getting answers what you maybe haven’t had but wouldn’t you want to ask more on what next ?because you may end up having two ops if it’s just diagnostic and may not be necessary having two

[asoullessstatic in reply to Afrohair]

I know what comes next, I've read almost every paper I can find on it. What I didn't get was any information about what happens in hospital, what to take, and the nurses at my preop weren't too helpful on that front either. I know the senarios, unfortunetly because they've never been in before they don't know what they are going to find, so we can't say whats going to happen next. Getting answers is enough for me right now after this long a wait tbh. I am in a large amoung of pain with some pretty severe symptoms (like passing and urinating blood during my period) so I am almost fully expecting to have two ops as I got told this last year at the last apointment I had with gyne. My surgeon said given the symptoms she doesn't think there is much she can do in this first round, but we will know, ater 16 years of pestering doctors I'm at least going to have an answer, but the bubble was long burst I can assure you of that.

I'm booked in as day surgery, and they told me at the time they will most likely go in, see whats happening, come out and then recall me for a secondary operation. This is the standard at my hospital. Almost certain that unless I take a funny turn due to the anesthetics I'll be home that night. I do know thankfully my surgeon is trained in excision surgery. I'd rather wait and be in pain then have to do this every ten years.

[Afrohair in reply to asoullessstatic]

Well I’m sorry you have to have it that way because If it’s just a diagnosis and on the bowl it looks like you will have one diagnosis one for general endo taken away through excision and one on the bowl that’s 3 operations because you need someone who knows how to deal with bowl surgery .I have the same issues your experiencing it’s not nice I have bleeding on my period front and back but I couldn’t just let them open me up and tell me I’ve got it cause I know in my head I’ve got it surely they will take some of the endo away is what I’m saying I’m sorry it’s took so long to get a lap And glad you are on some sort of path x

[RR12345]

Really loose clothes for after & a loose nightie to sleep in; apples or a light laxative to help with the constipation from the anaesthetic; peppermint tea to help with relieve any gas; a pillow for the car ride home to protect your tummy; loads of magazines/entertainment for any delays/to fill wait times (I had to wait in the surgery lounge for at least 5 hours until it was my turn); a really comfy place to sleep/hang out at home; an online grocery order/stock up before the op (lots of fruit and veggies; soft foods and something cheery - for me it was mini chocolate, dairy-free coconut desert pots haha!); someone to drive you home & stay with you the first 24 hours at least; bio oil to help will scars once the wounds have closed...

But I think the biggest thing is mental preparedness - I had been told for ages that I probably didn't have endo and it ended up being so bad they had to do an excision then and there. I was so surprised and even ended up having to stay in the hospital. The recovery time was also much longer, so make sure your work knows that this could happen.

Best of luck <3

xxx

[asoullessstatic in reply to RR12345]

Thanks for all the tips! Super useful!

The mental prep is worse, I keep going through in my head how oddly happy I will be if they find something and then I have an answer, and how distraught I will be if they find nothing. I'm almost more scared of them finding nothing, and it turns out that I'm just kinda crazy and all this pain is in my head. The last 18 months of waiting has been torture.

[RR12345 in reply to asoullessstatic]

No worries.

It is so scary and daunting! I was so nervous... so sending lots of supportive thoughts out to you.

Me too! I felt like I felt like I had been going mad for so long... but remember even if they don't find endo, it is something else - your pain is real. As someone said to me this week on here: be kind to yourself - it's very true and has really helped me to feel less helpless.

xxx

[Thecraftyadder in reply to asoullessstatic]

Great advice above to which I'd add sanitary towels because you bleed after the surgery. Plenty of pillows and cushions as its hard to sleep flat afterwards because of the shoulder pain from the gas. I found jogging pants because my new best friend afterward lol. Also a few people have done YouTube videos about laps and recovery which I found useful to watch.

It sounds like your surgeon is confident they will find stuff if they have already suggested a probable second surgery. I know what's its like to go for many years with no answers but my biggest memory from my lap last year is lying in recovery thinking 'They found something! They found something!' Such a relief to have an explanation at last for the pain and other symptoms.

[StefaniaJW]

Just remember that if it is just diagnostic, you will be in just as much pain if not in more pain afterwards because they will leave all endometriosis inside you and on top of that, you'll be in pain for the surgery. [this post has been edited in line with Endometriosis UK's code of conduct]

I also hope you will have it done at a BSGE centre.

Crush_endo has made an Instagram post on what and how to pack for the hospital. She is undergoing surgery soon.

[asoullessstatic in reply to StefaniaJW]

Yes I know, and yes it is a BSGE hospital.

Though considering it’s taken 18 months to have one appointment with a consultant and be given a date for a diagnostic lap I am under no illusion that I’ll end up with a very long wait for more surgery.

Truth is after 16 years of being told I’m crazy - right now, just having a concrete yes or no will improve my mental health beyond mesure.

[asoullessstatic]

I don’t have an option, can’t afford to go private, already thought about that multiple times and investigated those options myself. I didn’t sit twiddling my thumbs for years. I assure you my choice has been well through through and after seven hospital admissions and 16 years of suffering I’d quite like an answer actually. I don’t think answers like these are very helpful tbh, I asked for advice about going into hospital not people questioning my resources nor options.

[Pink_Moon in reply to asoullessstatic]

Good luck and I hope everything goes well for you xx

[Natalie507901859]

Hi, good luck for your surgery! As well as everything above (loose fitting clothes, pillow, book etc) I took in headphones and an eye mask- hospitals are so noisy and all I wanted to do after I came round from the anaesthetic was sleep, the eye mask plus some low volume relaxing music helped me drift off x

[tigerlily27]

Hi, thinking of you for today. Hope all has gone well and you are doing ok xxx

[asoullessstatic]

THanks everyone. Just an update....my lap was negative.

Not the answer any of us wanted, feels like two years has just been completely wasted. I was dicharged two hours after I woke up from the anesthetic so all the prep work was kinda useless.

I was discharged with a referal to psych...becuase that's going ot help the fact I pee and poop blood during my period.

To top it off, no one told me it was negative I over heard the anesthetist go "Well that was a waste of time theres nothing wrong with her." As I woke up so naturally I freaked out.

Spent the whole day pretty much crying. It really is the end of the road now, and now they geninly think I'm freaking crazy so.

thanks to teveryone for their help and I'm sorry I've wated everyones time.

[Thecraftyadder in reply to asoullessstatic]

Don't apologize. Seeking out help is not wasting people's time. I don't understand why they found nothing as your previous posts said nodules were seen on an MRI. And patches in your bowel during a scoop exam! I would complain to PALS about the way you found out your surgery results. I wish I could offer further advice but I'm not in the UK anymore. I went undiagnosed for more than 18years so I understand to a degree what you are feeling and just wanted to send a message of support x

[asoullessstatic in reply to Thecraftyadder]

I was only under for about an hour, I went under about 3:05 and woke up in recovery at 4:10. That include the time to insert the minera. They told me my pelvic organs were "healthy and normal" and that they couldn't find any scar tissue, active endo, or adhesions on my reproductive organs. They didn't take any photographs either.

[tigerlily27 in reply to asoullessstatic]

I totally agree with thecraftyadder. It seems very odd they can see endo on an MRI and then find none on a lap. They have treated you disgustingly by the way you found out. I can't imagine how you must be feeling, but you certainly haven't wasted anyone's time and I really hope you can continue to find help on here. Maybe this has happened to someone else on here, they may know what to do. Hope your recovery goes well too. X X X 💛

[kate24601 in reply to asoullessstatic]

I was in your shoes 2 years ago when I had my negative lap and felt like a fraud and confused why I was always ill if nothing was wrong with me. Fast forward 2 years and I forked out to see private who told me she's positive it's endo that was missed the first time (I was on the pill for the first one and believe this is why none was found). Don't give up, even though thats all it feels like you want to do, there can be so many more reasons for the pain such as missed endo, adenomyosis, IBS etc, and even if it is all 'in your head', then it can be treated too and you will be pain free one way or another! Don't give up hope, and I hope recovery from your lap is easy on you x

[asoullessstatic in reply to kate24601]

I've not had any post op pain really, but my apendix - which is where most of my pain is anyway - is on bloody fire. It's screaming in pain, and they fitted an IUD so my uterus is unhappy.

I've been on the Decaptyl injections for 9 months while waiting on my lap. I'm concerned that beign on it for so long before sugery could have hidden the endo. Furthermore, I'm really concerned about what happened on the day. The experience was pretty traumatic. I didn't get to see the consultant all day, at all, the registrar came to see me. She signed the consent forms. I'm unsure as to who did my surgery. No photos were taken. I've only got two scars so I know there were no instruments put in, and I was out from start to finish for less than an hour. I know the medical student fitted my IUD, so I'm really wondering how they managed to do a detailed diagnostic lap, IUD fitting, by a more junior surgeon, with students in the room, in less than an hour.

My family have decided they want a second opinion and have agreed that after Christmas that we need to find a private gyne in Glasgow as I'm refusing to see the Gyne in Aberdeen (as it would have been the same people who did my operation), which means travelling but hopefully its worth it. I can't see these people again, I'm starting to find myself very distrustful and borderline paranoid of doctors now.

[kate24601 in reply to asoullessstatic]

I think you could probably lodge a complaint at the hospital about how you were treated, especially given what was said!