Confused : Hi everyone, So I have stage... - Endometriosis UK

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Confused

Xroisinellenx profile image
12 Replies

Hi everyone,

So I have stage 4 endo and a frozen pelvis. I’m really confused. I have had my operation date through today and it says it’s day surgery and the doctor I saw at my pre-op said it was day surgery and I will be able to go home the same day but most things I have read said treating stage 4 is a long surgery and most people r under for hours. I’m just really confused 🤷‍♀️

Also my mum is ment to be on holiday when my surgery is. If I ring up to change it do you think I would have to wait even longer? Thanks

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Xroisinellenx profile image
Xroisinellenx
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12 Replies
Adventure101 profile image
Adventure101

Hi sorry to hear your in this situation, i had surgery for stage 4 endo and it said day surgery i ended up staying in over night as it took longer then they planned and was worse then they first thought. Usually it is just a day case as long as you have eaten drank and use the loo they usually send you home. If you ring them up to change the date they should be able to look for a new date before changing it but it most of the time you will have to wait linger unfortunately but it is always worth calling and asking. I hope you can get it sorted.

Faith27 profile image
Faith27

Hi! So sorry to read about your situation. Can I ask if it was a general Gynacologist that carried out your lap or was it a specialist? Also what were your main symptoms do you think in regards to frozen pelvis? I'm sorry that I've nothing to offer in terms of advice but wondered if you would be so kind as to offer your experience xx

Xroisinellenx profile image
Xroisinellenx in reply toFaith27

It was a general gynaecologist that did my first lap so because I’m stage 4 and have a frozen pelvis he has referred me to a specialist centre. I had no idea I had a frozen pelvis until my lap I thought all my pains was just because of my endo. All I can say is my symptoms was just normal endo symptoms apart from constant back pain which I have had for as long as I can remember but never thought it was because of endo. Sorry xx

Tillyfloss profile image
Tillyfloss

hi. How are you doing? I've been in the same boat, extensive stage 4 and full frozen pelvis. I was only there for a cyst being removed ( first general gynecologist missed the extent of my situation). I was in 4 days but it was worth it by the time I was discharged I was feeling considerably more comfortable and only needing paracetamol ( for the 9 months leading up to the op I was taking 29 tablets a day and still needing admitting for pain control on a few occasions). Give yourself plenty of time to recover and I hope it helps. I can't advise on the op waiting time, mine happened the day before a family holiday but I insisted they went and i was lucky enough to go to my parents to be looked after once I was discharged. Do you use the Endo diet? It really helped me and I still stick to it mostly even though I'm pain free most of the time. Good luck and if you want to ask anything do. Xx

Xroisinellenx profile image
Xroisinellenx in reply toTillyfloss

I’m ok. I’m just a bit torn on what to do. Do I change the date and wait longer or just ruin my mums holiday 😂 I’m kinda thinking it’s going to be postponed anyway because I only had my mri on Thursday and they will not have even had my results yet and my consultant said if my mri is not good she wants to more tests so. Yeah I use to take loads of tablets every day but I’m on morphine now 3/4x a day and that helps. No I don’t use the diet. How long was your op? Thanks x

Helsbelz profile image
Helsbelz

I have stage 3 and my last surgery 6 years ago was overnight stay. Originally was only supposed to be 1 but due to a long surgery and a lot of pain they kept me in 2 nights. Be prepared for an overnight stay is the best option. I think you may have to wait a little longer unfortunately if you need to change the date but if you do it sooner rather than later hopefully it won't be too much of a delay.

Take care x

Xroisinellenx profile image
Xroisinellenx in reply toHelsbelz

Hi sorry can I just ask how long your op took because at my pre/op the doctor said it would take an hour and that just does not sound right to me. Thanks xxx

Helsbelz profile image
Helsbelz in reply toXroisinellenx

Mine was about 3 to 4 hours... but he was very thorough and quite careful as I have a mild form of a bleeding disorder so he didnt went to risk a bleed. I think when they went in they were quite careful. They removed cysts and endo from all over. They also did a little removal from my bowel and bladder so they had to be really careful there. I think it just depends what they find. My first one was two hours. But we didnt know I had a bleeding disorder and my consultant didnt do it. Xxx

E-ZEE profile image
E-ZEE

Yes if you change it, you have to wait long time for new appointment,In concern of your operation are you sure it is not a diagnostic lapro? In my first operation they discharhed me on the same day,it was stage 4 endo,but this time they said I have to stay in hospital 4 to 5 days.

Make it sure that,you are treating with endometriosis centre not a general gyne.

And they are going to do endo excesion operation instead of just shaving the tissues,if they are just going to shave tissues not doing excession operation,it is usually the day case, but it will helpless ,endometriosis will come back again very soon .So make sure your doctor is endo specialist and going to do excesion operation.

Good luck x

wanwood profile image
wanwood

It’s still considered “day surgery” if they keep you in just overnight, practically speaking. At my hospital it’s called “short stay.” The distinction is that unless something goes a bit wrong, you’re not going to be admitted to a gynaecology ward, you’ll just be in the recovery ward for short stay surgery, if you see what I mean. If it’s stage 4 endo but nothing needing a bowel surgeon, I would plan to be in one night if I were you. Xx

megan31585 profile image
megan31585

I have stage 4 endo. I had a specialist that excised my 6cm cysts and removed tons of scarring and adhesions that was covering and wrapping up my entire reproductive system and attached to my bowels too. The surgery was supposed to take 3 hours but ended up taking 6 hours. I left the same day- in at 9:30am, and home around 8pm. I was def ok heading home that same day. Hope this helps! I know everyone’s situation is different but I’m glad you’re seeing a specialist. Hopefully they have enough experience to know how long it will likely take and book it accurately.

Peebles2sarah profile image
Peebles2sarah

I was under for about 2 hours. Surgery was 10-12 and I was out of there by about 3pm (would have been even earlier but I had a lot of nausea and couldn't pee). I was out of there in extreme pain, but I was out. I was on bed rest at home at home for about a week and half though. Took things slow for about a month at work!

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