Terrified laparoscopy WON'T find Endo

How nuts is that? That I am actually hoping it is Endometriosis!!? I got a call yesterday offering me a cancellation for next Monday-the day we were going on holiday!! We have cancelled the holiday-gutted, but couldn't pass up the chance as It is at a BSGE centre with the surgeon I wanted. So much rides on this 1st lap, not least my sanity. After two years with severe daily back, left hip and sciatic pain I just don't think I can handle being told they didn't find anything. 5 days of the week I am certain I have Endo, the other two I question whether I have invented the pain and maybe it doesn't exist at all...Do/did you have this worry with your first lap?

15 Replies

  • Yep. Got mine next month, having excision surgery too but havent had diagnostic lap. The specialist is 100% sure I have endo and suspects its deep and infiltrating but I still am terrified that I'll wake up after surgery and he'll say he didn't find any. So you are defo not alone. We don't WANT to have endometriosis but we do want answers as to why we've been so ill and then we can move forward :)

  • So true Larrie7. Can I ask what are your symptoms? X

  • Ha! How long you got? :D ok so always had horrific period pain until i went on pill when I was 17. Then a few years ago had bad stomach and IBS and just didnt feel right. Then stopped taking the pill for a bit lats summer and got lower back pain and was weeing like 20 times a day. And that one period i had not on the pill was HORRIFIC. Recently aswell i have a weird pain on my period that feels like its my cervix...and can feel it when i sit down.and now have really painful bowel movements when having period too. To the point i have to psyche myself up to go to the loo.

    #livingthedream hahaha

    P.S. I'm 33

  • Yah I hear you! Don't you ever think, how the .... did I get here??? Fill in the blank as you see fit. Good luck for next month I hope it all goes well .....Im 37,but don't tell anyone 😉

  • oh yeah i think that. I think what the hell has happened to my life? haha. and I've been poked and prodded, had so many tests done over last few years and each one i almost look forward to because i'm desperate for an answer. Like who looks forward to cystoscopies and ultrasounds and endscopies? oh and i totally forgot about the unrelenting, never-ending fatigue too :D i probably forgot to mention it because im so damn tired.

  • Also good luck for Monday. you'll be fine :) let us know how you get on. You're at BSGE centre so in the best possible hands

  • Thanks Larrie7, I'll let you know how it goes, see you on the other side!! 😶 x

  • I completely understand how you feel and whilst you don't hope to have Endo you just want an answer. I felt exactly the same before mine, willing this to be the procedure to finally give me an answer. You do start doubting yourself as time goes by and that's a horrible feeling.

    Wishing you all the best for next Monday

    Lou x

  • Thank you Lou. So good to know it's not just me!!! x

  • The first one is always the scariest. this lap could change everything either way, and if it isn't endo then they could explore other options which means the source of the pain will be found.

    Hope everything goes well xxx

  • I had the same thoughts before my first laparoscopy and they found moderate endo, to which I cried with relief when they told me (I wasn't going mad for years). This was not at a BSGE centre though. I am now waiting for my second laparoscopy which is at a BSGE centre but I have also been thinking what if they do not find anything. Basically I had almost 2 years where my symptoms subsided due to pregnancy and breastfeeding my son. Since Oct / Nov last year when my periods returned I feel like I am almost back to square one. I too have an OK day and think ah I'm fine the pain isn't that bad... until the next day!

    I hope everything goes OK Monday x

  • Thanks Nikki. So sorry to hear you feel like you're back to square one. That must be so difficult especially after experiencing some relief. Good though that you are going to be seen at a BSGE centre too. Hope yours goes well x

  • I can understand your worry. Good news is that you are at a BSGE centre, which means they will look everywhere for endometriosis. Your symptoms sound similar to mine and I have endometriosis on my uterosacral ligaments and Pouch of Douglas. I hope for good news for you...

  • It's interesting you should say that. I suspect that is where they will find mine, though self diagnosing is never a wise thing to do!! This forum has been so helpful, I identify so much with what the other women say, along with Lindle informative posts. I guess we'll soon find out.... X

  • i worry about this so much ! my gyno isn't a specialist and reckons all endo shows up on mri scans but there is nothing that showed up!!! she's offered me lap in a mont but im petrified they won't find anything !!! i totally get it !! but have hope :*

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