My endo wasn't removed at my laparoscopy!!😭

I just had a laparoscopy three days ago. When I was discharged I asked the nurse if any endo was found and she was unsure, she checked my discharge sheet and said it was found on my left and right side on my uterosacral ligament.

I phoned the hospital today feeling completely frustrated that I still didn't know if this had been removed or if further surgery was required and they couldn't tell me much and said I should just "wait for my follow up" she said it looks like the endometriosis was too much for them to remove during he laparoscopy. I currently don't know anymore than this... if further surgery is required, or any other treatments are available.. I feel completely frustrated! anyone experienced similar issues.. where endo couldn't be removed during a laparoscopy?

14 Replies

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  • Hiya

    So sorry to hear that they couldn't remove it. Do you know if they'll be sending you for an MRI?

    I had lap about 8 weeks ago hardly had any discharge info had to call a few times. I had endo removed from ovarian fossa but they also found endo on my urethra which couldn't be removed. As yet don't know why.

    Have my MRI on Sunday

    It's a real shame that discharges are so brief and that we have to wait in vain!

    Hope all goes okay take care xx

  • They haven't mentioned sending me for an MRI.. just that I will be referred to the endo clinic in 2 weeks time. Was made to feel really silly when I phoned up and asked why exactly was it that I needed to know now and couldn't wait... didn't want to waste anyone's time but just desperate to know what was actually done to me! Have no idea how bad the endo is or what it means for me. I stopped taking my pill in January because I want to try and conceive and now I feel like I'm a million miles away from that and being made to wait is just so frustrating.. other people on here seem to get a good amount of information before they are discharged.. annoying when you wait so long for answers!

    What will they do for the endo that they couldn't remove for you? I do not want to go through another surgery!

    Xx

  • When I first had a lap for endo they couldn't remove much due to the locations so had a 2nd lap few months later to remove as much as possible now waiting on my 3ed lap to remove what's grown back. Have you tried the mirena coil? or the pill? These could possible starve the endo and should stop it from growing.

  • They offered to put the coil in when they did this lap but I said no. I've been on the pill for 8 years and stopped in January to try and let my body get back into it's natural rhythm and so that I can try and get pregnant if this was something I would struggle with due to endo. I guess all I can do is wait for my follow up and see what they say! You just think when you wait 6 years for a diagnosis it will all be simple from there... how wrong was I 😳X

  • Bless you. I'm in the same boat as you knowing limited information and being made to feel a pest just wanting to find out quite rightly what happened during lap and what are the results / consequences!

    Hang in there, you'll soon find out and a plan of action created. That's the best advice I can give!

    I'm literally clueless right now. So much info on bladder endo and in particular about the ureters, but I've found virtually nothing on urethra endo. Only found 1 article that indicates it can cause renal failure and usually indicates aggressive stage of endo. It would have been useful to know why it couldn't be removed but it wasn't written on my notes apparently!

    I'm thinking of you. Try and stay strong and think positive. That's what I'm trying to do!

  • Creear91,

    It's so wrong that they don't explain things properly! I'm guessing that you had a general gynaecologist and not a specialist? I'd also guess that for once a surgeon has done what they should do in your case. NHS guidelines state that if you've endo on your uterosacral ligaments then it should be dealt with by a specialist as it's a bit more complicated. I only know this as Lindle (lady on this site) provides loads of info' on correct practice. My uterosacral ligament was operated on last Year by a general surgeon which left me needing a walking stick due to nerve pain from the operation. I know it's frustrating but it would seem that in your case you've actually been treated correctly and referred to an endo' centre (BSGE registered?) which means that when you are operated on it will be excision by a specialist and hopefully it'll be your first & last surgery - instead of countless ops due to general surgeons missing the endo'.

    They should still let you know what's going on though and certainly not make you feel bad for wanting to know what's happened inside you!

    Wish you well x

  • I came round from my first lap to find that none of it had been removed. At the time I was pretty upset as I had assumed you had your lap and that was it, but sadly with endo it doesn't always work like that. Sometimes if it is severe or in a risky place, that particular gynae does not have the skills to treat it and it's better that they leave it alone rather than attempt to treat it and make things worse. It doesn't mean it can't be treated, it just means it couldn't be treated by that particular surgeon or during that particular surgery (so for example, I couldn't have all my bladder endo treated during my second surgery because the consultant didn't know it was there and so I hadn't consented to a cystoscopy).

    Please try not to worry. I know it's easier said than done. x.

  • Thanks guys! That makes me feel a little better.. just wish it would be explained at the time! So sorry they caused you so much pain! I just think sometimes we are made to feel like it's just "a bad period" and no one actually understands how excruciating it can be!

    Do any of you have any experience or knowledge on endo on the uterosacral ligaments? I'm mainly freaking out about any damage that could have been caused to my fertility while this was going on? If I only had endo in this area I'm wondering if it would have actually caused any long lasting damage? I've had a few miscarriages but hoping once it has been removed I would be ok!

    Xx

  • I agree with what Simo7 has said.

    For a first lap it may be a general gynae doing it, and is just a 'diagnostic lap' . If the endo that they find is in any way complex you need to be seen by an Endo specialist.

    If possible, make sure that you are being referred to a BSGE Centre, as they have all the best staff there.

    Sadly, many women are wrongly treated by general gynaes, who don't really know what they are doing, don't remove the endo that they do treat, properly, and leave loads behind because they don't explore the entire abdominal cavity properly, or they even fail to recognise some types of Endo tissue. Often these women have to go back repeatedly to have the work done properly or have scar tissue removed.

    I hope it all goes well. Have a talk to 'Endo UK' about all this - lnk to their site at top of page. Once it is all safely done, good luck with the pregnancy and investigate a coil asap after, as one was great for me.

    Take care.

  • Deep endo on other organs like bladder or bowel requires a multi disciplinary team to operate for safety, as is normally done in a a BSGE centre. but surgeons are bad about warning women up front. I only found out the day of my op after checking in.

  • You have the right to ask for your notes even before the following up. Just email the surgeons secretary. If they are unresponsive ask for the data protection officer as it is your legal right to have access to the records. There is a set max period of time and charge but i was emailed mine within a week free of charge it just depends on the hospital policy and how officious they are.

  • Hi

    I too had a not too dissimilar experience, there is still hope of course we do understand your frustration and worry.

    These ligaments are packed with nerve supply to bowel and bladder hence only highly experienced Endo surgeons should attempt the excision. I know some of the other ladies have mentioned the pathway and criteria for BSGE, my general gynae referred me although didn't tell me so I went along to an appointment without much information about my condition.

    Following my initial appointment with BGSE team I did have a MRI to exclude any bladder or bowel involvement luckily this was clear but was diagnosed with adenomyosis. I then had a bit of wait before my laparoscopy where they excised the deep endometriosis on the ligaments and superficial parts elsewhere . It was painful and I do have residual problems in terms of pain.

    In terms of fertility, I have been very lucky and able to have children.

    Wishing you lots of luck

    K xx

  • Hi,

    I had a Lap 4 weeks ago, I was told beforehand that if there was just a little bit of endo they would remove it there and then but if there was a lot I would need another operation. I've just had my follow up appointment and I will be having an op in about 4 months to have it removed as mine was severe. If they had removed anything it should say on your discharge notes.

  • Yes. Mine was discovered during lap to remove an ovarian cyst. Turns out the cyst was endo. They removed cyst, left ovary but other patches left. Waiting on 6 week check up to see what the plan going forward is.

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