No endo found.. What now?

I'm sat in the ward after my lap.

Consultant said no endo and everything looks healthy.

I'm really relieved in many ways but so upset in others because it doesn't change the fact that I have severe pain in my pelvis, across my back, down my leg.

Where do I go from here?

My pain disappeared during pregnancy and breastfeeding and we do want to try for another baby soon.

But I really don't know what to do next. Any have any advice?

Aside from being continually pregnant until the menopause?

Someone please suggest something :(

20 Replies

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  • Was your op done by a general gynae or specialist? General gynae's can miss endo that is quite mild or in a difficult to access place. Give yourself time to recover from the surgery, ask to see any pics and and/or an op report. If you feel the result is wrong you could ask for a second opinion, but obviously that's waiting again for an appointment, whether or not they offer you a lap etc. If you're considering baby no 2 might be best to start trying for that if it's right for you and your family and if the symptoms persist after pregnancy, or you don't fall pregnant you will have the ammunition to go back and ask for a referral to a different consultant. Good luck.

  • Oh dear, You must feel back to square one. How frustrating!!!

    This is exactly what I'm dreading happening when I have my lap. If I do find myself in this situation I will seriously consider paying to go to a private specialist, it is expensive (£350.00 for inital consultation) but you know your body and if it doesn't feel right you should get a second opinion, whether that's private or NHS.

    I hope you're ok, try not to get too down about it (coming from the women sat in bed in pain feeling down) 😜 xxx

  • Hi I too had a laparoscopy yesterday and was also told I had no endo and my ovaries etc all looked fine. She did however say she repositioned my right ovary?? Said that should help. Never heard of it before and have Google it and no clue as to what she meant. I'm hoping that her referral to my GP explains it all. I'm not due to be reviewed apparently. I feel like a fraudster who has made up this pain in past.

  • Thanks for all your replies!

    It's ridiculous really. I should be so happy.

    But saying there's nothing there doesn't take away the pain I'm in.

    The thing that really upset me was overhearing the nurse in the corridor replying to Gynae when he said lap was all clear.

    "What is it with women today demanding laparoscopy? Why can't they just get on with their period pain like everybody else?"

    Real nice.

    I just need to keep being proactive I think, even if that involves baby making!

    But I'm not just about to roll over and put up with the pain.

    Maybe way to go is paying for a private consultation with specialist and seeing where it goes from there? Hopefully referring back to the NHS if beed be! If they say there's no endo, then they may be able to suggest something else.

  • I would honestly make a complaint about that nurse. That is not professional behaviour and it's people like her that are the reason it takes an average of 7.5 years to get diagnosed.

    I understand how much of a shock it was for them to find nothing - my surgeon last month said the same. Honestly if it was not done by a BSGE centre then get yourself a referral to your nearest one. Worst case they find nothing again and I would then ask to get your bowels checked if you haven't done before. Don't stop fighting, in this day and age it's ridiculous that anyone should just have to live with pain :)

  • Maybe you don't have endo but if a second opinion gives you reassurance, go for it.

    The pain may be related to something else, so it's worth getting a second opinion.

  • Just to note, having a lap with a bsge surgeon does not guarantee they will find endo. Had my lap with a bsge in November - nothing found even though I have all the symptoms.

    I also want to encourage you to allow yourself the time you need to recover. I rushed back to work "because there's nothing wrong with me". I don't want you to make the same mistake x

  • Thanks for the advice.

    I know .. Really I'm extremely relieved that there's nothing covering my insides.

    It's weird really. I want an answer but I don't want to pursue it to the exclusion of just living my life.

    It's just harder to think like that on the days I'm in so much pain that I struggle to look after my son.

    But, I'll have to find the balance!

    Where did you go next after no endo diagnosis? Or have you left it be for now?

  • I'm in the same situation! My lap was last week, the NHS gynaecologist removed a cyst and told me my uterus looks healthy. I was shocked, I asked why I'm in so much pain and he said I'll have to see a specialist.

    I'm 32 and not been able to get pregnant despite coming off the pill 3 years ago. The surgeons parting words to me were "get pregnant, that'll fix it". How insensitive- thanks, I'm trying!!

    I wish id have gone straight to a specialist as they'd have been able to investigate further while I was anaesthetised and inspect my bowels and further than the top of my uterus.

    1 week after lap I have my usual pelvis, back and leg pains (plus the surgery pains) and I'm wondering what to do next.

    I have an apt with my GP again in 4 weeks time I'm hoping for a referral to a specialist.

    It's so helpful to speak to you all x

  • Will you have to pay to see a specialist?

    Or just ask the GP to refer you?

    So sorry for your struggles :(

  • I'm going to ask my GP if I can be referred without having to pay. I would struggle to pay so then I don't know what I'd do!

  • At least if gynae recommended a specialist then they've no reason not to!

  • You need to be referred to a BSGE Centre = NHS Centre that specialises in Endo. Most general gynaes - even good ones, private or state - do not generally have enough experience of Endo to manage to search and look in all the 'hard-to-access' hiding places in the abdominal cavity during a lap; nor do they always have the ability to recognise all the the different types of Endo tissue. No matter how nice, good and well-meaning, many of them just do not have the right experience.

    Trouble is, it has to be known that you have Endo, as BSGE Centres only deal with the worst stages of Endo. So, seeing another - very good - (private?) surgeon may be the route - but get him to refer you to BSGE if possible, as another problem for women with endo, is that bad or partial removal of the endo by non-specialists, can make things worse in the long run.

    Read around on here for far more info on BSGE Centres etc, as well as the experiences of women who have gone thru the system and won - even tho' they had to fight. Also, contact 'Endo UK' (link to their website at top of page), where you find links to speak to their advisors, and a link to find out more about BSGE Centres.

  • I had my first lap in 2007 and was told no endo. I went on the mini pill which stopped my periods and the endo pain for years until I came off it in 2012 was then diagnosed in 2013 with stage 4 endometriosis. If you still feel something is wrong get a second opinion I was told my first lap last 5 minutes how they thought they would even first anything in that time is beyond me! Go with your gut you know your body better than anyone else xx

  • Oh wow.. how did you find out how long the op lasted?

    Will keep pushing for an answer .. but for now .. rest :)

    It's actually quite nice resting.. can't remember the last time I did .. probably pre baby!

  • I only found that out in 2013 when I had to have an open laperotomy because the endo was so bad! They told me when they were talking about how severe it was. 😕 yup rest is good get as much as you can and just chin up and make sure your heard if needed xx take care x

  • Has anyone bothered getting reports of op or pictures? Is it worth it?

    How do you go about it?

    I do have a follow up appointment where he said we could try different hormone treatments, may be worth a go at some point. But obviously won't be helpful if trying for a baby x

  • I can't even describe endo pain .. I was diagnosed then later treated for stage 4 endo which made actually no difference to my abdominal pain/bowel symptoms .. I have spinal issues too, arthritis .. All I can suggest is watch your bladder and bowel movements and make a diary of when you get pain, eaten, any changes to your bowel/urinary movement then discuss your findings with your docs .. Gynea is just one part is down there .. It might not be gynea related .. I'm not sure mine is so I see a colon guy tomorrow (I have issues with all three) ...

  • I say that because sometimes changes happen so slowly, or that as adults we become real busy and don't notice we are actually suffering from chronic constipation, or other illnesses and try blame it on something we 'think' or are sure it is! That's why a detailed diary will help you! Let's be fair, we have a lot going on down there as we are unfortunately women 😂😂

  • No Endo was found for me. I was more frustrated than relieved. It didnt explain the bloating, pains in stomach, hip pains etc.

    Since my op i stopped having semi skimmed milk and im now on roasted almond milk. Ive also cut out a lot of dairy just have it in small amounts.

    For a month after my op i was hungry all the time and ate loads. I also lost a lot of weight from the op. I ate some cereal and s small bowl of fruit in the mornings without fail to get my nutrienrs back that i had lost. I drank plenty.

    The hardest thing for me was going back to work in a nursery and being hugged and pulled by the children. Very overwhelming because they had missed me sooo much xx

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