Has anyone had a lap but not found any endo?

I have an appt with a diff gynae cons next week. my doc thpught i was fobbed off last time so has re reffered me somewhere else. im pretty sure they will say im goinv to have to have an exlap but im worried they wont find anything! Im convinced its endo or even adenomyosis but scared that they wont find anything. maybe im just after an explanation n the pain wud b easier if i had name for it otjer explaining to people its just womens problems!! X

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  • It sounds like you have a supportive GP which is very important. A had a lap in 2008 after 9 months of endless tests and actually cried with relief when they found endo. However, when my symptoms returned I had another lap last year and they didn't find anything and I cried with dissappointment! The truth is, they will only find endo if it is big enough to see, so if they don't find any then it may be microscopic endo or embedded where they can't see it.

    As much as I would not wish a diagnosis of endo on anyone I completely understand that you just want answers.

    Good luck xx

  • My first lap was done during an emergency admission for pain and no endo was found - I only found out much later that the lap was done incorrectly (I was only in theatre for 10 minutes, they didn't make enough incisions to be able to insert instruments and move organs etc out of the way) and so they didn't see anything.

    However, this is extremely unlikely in a scheduled op - they will have the time to perform the procedure correctly.

    Endo varies greatly in severity - in some people, it will be dramatically obvious and in others it will be clear and much more difficult to visualise. Some gynaes are better are spotting this mild disease than others.

    I guess what I'm saying is that we all worry about the doctors finding nothing because we want answers but try not to worry. Even if they the lap is clear, that isn't the end of the road - as long as you keep pushing for answers, you'll eventually get to the bottom of it.

    Chances are you have endo and they will find it - if they don't, then perhaps you don't have endo or perhaps they didn't see it. Try not to panic and relax - its out of your control, so wait and see what happens and take it from there :)

    Take care

    X

  • Hi claireyfairey, i'm the same boat as you, have had a lap before and nothing was found. In that instance I thought I may have been more upset than if they told me i did have endo. It knocked me down for a while, but now waiting for a re-referral to another gynae specialist. I'm not going to give up until I get my answers! This time, I'm taking my husband to all my appointments as back up. Take your husband/boyfriend/best friend as your support if you can, they seem to listen more when theres more than one person, especially if they can offer an outsiders perspective on what its like to see you in pain!! All the best, I hope you get your answers soon, don't give up!!

    xx

  • I am in the same boat too. My doctor wanted me to have ex lap but consultant is trying me on Zoladex to see if pain is gynae related, they say if pain goes away it's gynae but if it doesn't it's not which as from now reading others experiences thats not the case. I am on 3rd injection and still have pain, my pain is actually better when walking !

  • Hi there, I have lost count of the amount of laparoscopies that I have had done over the last 20 years. Sometimes they have found endo & other times they haven't. I don't know if they still do this, but they used to determine whether or not you had endo, going by your last laparoscopy. For example, if you had a laparoscopy that was clear, then they would say that it wasn't endo causing your pain, and would pretty much do nothing more about it. I understand that they are currently looking for a 'marker' for endo because the CA-125 blood test is meant for ovarian cancer and doesn't really help much with endo. If they could just do a simple blood test, it would save a lot of tears and a lot of unnecessary surgeries. Before, when you had a 'clear' laparoscopy you were told that there was nothing wrong. Nowadays they are telling patients that just because the endo cannot be seen, it doesn't necessarily mean that it isn't there. I don't know which is more frustrating! They still don't understand enough about this disease or know why it shows up sometimes & hides away at the next. I totally understand the frustration and it is horrid not knowing what's wrong. I used to cry every time they didn't find endo, but at my last lap in 2011, I was relieved, seeing as I really didnt want it to come back post-hysterectomy. I reckon the sooner we get a blood test for endo, the better! Hope you get some answers soon. A x

  • I have had 3 lap and endo was only diagnosed at the last one. I don't know why, no explanation was given. After lap 1 and 2 I was I didn't have endo and nothing else could be done. Be persistent, it is very true that it can be missed or be very deep so it can't be seen. Good luck, I think lots of us feel disappointed if nothing is found as we are so desperate for answers x

  • I agree - be persistent I had a lap where they found nothing but a colonoscopy last week found that it was endo basically I have just stopped trusting what any of the doctors say and just go with your gut and how you feel it takes a long time but hopefully things will be sorted soon for you its just difficult trying to carry on when your getting nowhere! xx

  • Well i just had my appointment and the dr was brilliant so understanding. He has put me in for a lap so just got to wait. I have done some research on the dr his name is mr guyer at portsmouth QA he is a specialist! so glad i have found him :-) very nervous about the op but its a huge leap in the right direction.

    Thanks for ur kind advice ladies xx

  • Mr Guyer is AMAZING!! He is such a lovely consultant! Has the most amazing knowledge, any question you have he can answer it!!! He is my consultant, and I love him!!! Totally got the best consultant there xxxx

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