Endo found but still bit confused - Endometriosis UK

Endometriosis UK

58,721 members46,533 posts

Endo found but still bit confused

Chloelouise92 profile image

So I had my first laparoscopy on Tuesday. The surgeon who was an Endo specialist came to see me when I was still fairly drowsy to tell me that she had found Endo but hasn’t managed to treat it and I would need to go back for further surgery and have a hospital stay this time. Only thing is I don’t really fully remember what else was said. I asked the nurse later to see if my notes would explain any more to me. She wasn’t sure about all of it but it said on the notes deep infiltrating endometriosis and would need a stage 2 procedure. Not sure where any of the Endo was or wasn’t and now have to wait for 6 weeks for the surgeon to phone me for a follow up appointment and sort out what happens next.

Feel a sense of relief that I have some answers but also now feel anxious about the thought of more surgery and not really knowing where the Endo is etc. Anybody had a similar experience? X

17 Replies

It's really bad practice for a surgeon to speak to you when in recovery (other than 'how are you doing, all went well etc.') for this reason! We are not allowed to do this in my trust - the consultant phones you at home in a few days. Suggest you call/email the consultant's secretary to say you were drowsy and ask that the consultant calls you to explain what was found.

If they won't do that (and say to wait to the 6 week follow up) you can request a copy of your operation notes - they have to provide this by law if requested. Or they should also be sending a letter to your GP outlining the gist of their findings in a few days, so you could ask the GP receptionist in a week or so if a letter has been received (they may not have copied you in) and take it from there.

I thought they may come round again a couple of hours after to discuss in detail but unfortunately they didn’t. I know I asked literally as soon as I opened my eyes did they find anything because I was so anxious they might not have found anything so they went and got the surgeon to speak to me but I can’t remember exactly what was said!

I did speak to the secretary to be fair but she couldn’t give me much more info other than that they had removed some Endo (don’t remember being told this Tuesday) but she couldn’t tell me where the Endo was found etc. Think I may try the gp today. If they haven’t got the notes yet I can always phone back at a later date. Just feel like 6 weeks is a long time to be waiting to find out info! Thank you for the advice x

Six weeks is a very long time....I know I had to wait that long before I even found out what had been done at laparoscopy......I was kept in overnight night.....still don't know why... didn't see anyone other then the nurse who kept pumping me full of pills and the only information I had was on my discharge letter which was very vague.

Even after speaking with consultant I was left with more questions and currently waiting another op for deep bowel endo. I would suggest you request your medical records from hospital now.....then hopefully when consultant gets in touch you'll be more aware of what has been done and needs to be done.

In the meantime try to relax and not stress so much about what ifs..( I know that's easier said than done!!!) but your body has been through a lot and needs time to recover

take care and hope you feel better soon

It’s crazy that we are left that long to find out! It’s not a small thing either is it it’s a huge deal when they find something like that, especially if people are really anxious about it. I think I am going to attempt my gp today and see if I get anywhere I mean can I ask them for notes if they have them? I don’t really know how it all works! I assumed that the surgeon would come and sit down with me and go through everything in detail but it was nothing like that! My mum and partner said to me when they picked me up, so what did they find etc what are they going to do...I didn’t really have an answer for them I just kind of said well I don’t really know!

Do you know how long roughly until you will have the op? Hope it isn’t too long for you.

Thank you, just going to try not worry too much yet as I’m getting a bit stressed and it isn’t helping! X

It's proper crap being treated that way and yes its huge to us but to them its the same shit just another day!! It's so hard trying to answer questions when you don't even know yourself

I've no idea how long op will be but getting fed up with it all now.

If you go onto the website of the hospital where you had your operation done there is a 'request your medical notes' form that you can fill out.....Would be very surprised if your GP had notes yet as its not even a week since op but you could try seeing if they have anything. Your hospital notes will give a lot more detail about operation and what was done/found/or needs doing.

Just try and pre occupy your mind with something else... get out in the garden if you can and enjoy the sunshine. xx

That’s exactly it! I know to them they do this day in day out but to an individual that have just found out they have a condition that possibly cannot be cured could be life changing! I’m quite a positive person and I don’t normally worry about things but I am Anxious about it especially as I don’t really know what’s going on.

Ah that’s brilliant I had no idea you could do that so thank you for letting me know! I’ll get on and have a look at that shortly.

That’s crap for you as well the waiting around is half the problem isn’t it because you feel like you’re just forever waiting for what has to happen next! I hope you get seen soon it’s not fair to keep you waiting.

I think I’m going to get reading a book that always helps take my mind off of things! Try and enjoy the last few weeks of summer holidays as I work in a school! Best of luck with getting a date for your operation 🤞🏻 Xx

I didn't know you could get records till someone on this site mentioned it....I wish I had the notes for when consultant had phoned I felt like he was just ticking boxes and sending me on to someone else to deal with!!!

Like you I've always been positive and do try so hard to keep that way but the last two years have been a struggle. I think it's because we don't have control over the situation.....I'm no control freak.....but it is my body!!

Enjoy relaxing with your book and I hope you heal well soon xx

Yeah I bet! Would make a massive difference if you had the notes so you had some kind of idea what was going on with your own body!!

Thank you, let me know if you get a date for your op...got my fingers crossed for you xx

Hello.

I hope you are recovering well - I bet you are relieved to know you weren’t imagining the excruciating pain as that’s how we are made to feel before diagnosis.

It sounds like you are in a similar situation to me, after both of my diagnostic laparoscopies they’ve been unable to treat my stage 4 endometriosis there and then as it’s too severe.

So on both occasions (about 3.5 years apart) I’ve gone back in for more extensive surgery with a bowel surgeon, endo specialist and another surgeon all present each time.

Mine had severely impacted my bowel, bladder, ligaments, womb was attached to bowel, pouch of Douglas obliterated, one ovary stuck to bowel and other to pelvic wall Plus two huge endometriomas. And the list goes on lol.

Sadly despite the excision operations it keeps returning.

I’d maybe ring the secretary and just ask for a summary of the findings, all you have to say is you can’t recall what was said as you were only just conscious from anaesthetic.

I think it’s easier somehow to know what is what inside so you know what is causing each element of your pain.

Best wishes to you - message me anytime xxx

Thank you for the reply! Yeah I think that was my worst worry of all that they would find nothing to explain the daily constant pain I’d been facing! Just wanted an answer to it all really which relieved I have! It’s now just the what happens next part isn’t it that makes you anxious! I’m terrified about the fertility side of things as me and my partner have wanted to try and start a family for so long the thought of it being taken away from us is a really scary thought.

Wow you certainly have got it all going on haven’t you! I’m at a point now where because I don’t really know how much there is or where it is or anything like that I’m in a bit of a limbo I guess. I don’t really think you can ever prepare yourself fully can you. I thought I had Endo for a quite a while now but for some reason I was still quite shocked when I came round and was told they did find it which seems really strange to even say but everything I’ve ever read about it is really quite daunting. I’d never even really heard of it let alone knew anything about it up until last year so it’s crazy to now find out I have it.

Thank you I really appreciate it and hope you are managing and coping with yours xx

Hi. Yes the same for me too. I had my laparoscopy April 2019 and was diagnosed with stage 3 rectovaginal endo on rectum, pouch of Douglas and ureters. They said they couldn't do anything as there was no superficial endo and would require a bowel specialist. Also wanted to give me my options. I decided to go ahead and been on the waiting list for surgery since January. Was advised of a year's wait pre covid and now they are unsure of how much longer it will be. Should be start menopause injections soon. Hope this helps x

Its a long wait after diagnosis then, I’m worried about how long will it be as I was hoping after this I would be able to start trying for a baby 😕 I think I’ll have to just wait now until I hear from the surgeon and just hope I get some clear information on what happens now. I’m 27 so I’m hoping it will be sooner rather than later I’m worried the longer it’s left the less chance of pregnancy. I haven’t been told that but I guess it’s because it’s such a huge thing to me. Hopefully you are seen soon, I was seen quicker than I was expecting in the end! X

Hi, I've had painful periods from early 20s onwards and was told its normal by various gps. In May 2018 the pain never went away and became daily. Was passed about with an ibs diagnosis until I had an MRI in Dec 2018 which indicated endo then had a laparoscopy April 2019. I will admit, I left it a bit late to have a family and now been told I have a 2% chance of conceiving and have just turned 40. I was offered ivf but Im personally at peace with it now. I just want to feel better. Everyone's case is different and I know people who have stage 4 who have never had any issues conceiving. Be positive and ask them as much info as possible. Knowledge is power!!! X

Yeah my pain is daily too. I feel bit overwhelmed with it all there is soooo much to try and take in when you look it up online. This forum has been great though getting advice from other people in similar situations and just having somebody to talk to that is going through the same! Yeah I can understand that, it just gets to the point where you think do whatever you need to do I just want to feel better! It’s hard isn’t it because you don’t always know if the surgery will be successful. It most definitely is! So glad somebody said to me look into Endo because I knew nothing about it, funnily enough the surgeon who did my lap was an Endo specialist had previously told me I didn’t have Endo because my scan was clear. Had I not looked it up previously and seen that the only way to definitely diagnose is laparoscopy, I would have taken her word for it and probably not have a diagnosis now! X

Yes this forum is fab, I've found out so much info from everyone. Great support network. So much to take in and I feel I think about endo constantly, trying to second guess my pain and work out why it moves about. I will never get used to it but definitely managing it better. One step at a time. Wishing you well and hope you get some better days xx

It’s like a place to come and vent where people won’t think your just moaning because they understand! I think that’s it isn’t it finding a way to manage and cope with it. Thank you so much xx

Thank you too x

You may also like...