Negative laparoscopy but severe symptoms of endo

I have just finally been operated on after waiting on the urgent cancellation list. I was devastated when the surgeon came out and told me I did not have endo and that everything looks fine. I asked how that is possible and what I should do because the pain is so bad and I cannot even have intercourse.

She said it may be related to the bowels. I received a colonoscopy when I was 21 (I am 24 now), and they told me they couldn't find anything, and that 'maybe it is ibs'. Since then, I have cut out dairy and gluten and made severe lifestyle changes. Nothing has improved.

I feel like it is endometriosis. When my gyno first told me about it he said he was almost 100% sure that it was that and that I had literally every symptom of a severe case. I wanted so badly for something to show up so that I can stop feeling like I am crazy, and so I could finally have a reason for feeling so ill all of the time. I am not making the pain up and I know this... I have been struggling for so many years and have been in and out of the hospital for sharp pains in my abdomen and pelvis At one point they were going to remove my appendix because they thought it may be appendicitis, but it was not. I am in and out of the hospital so frequently with "phantom pains" in the area--- each time the doctors tell me they have found nothing, I leave with shame and confusion. The pain persists.

I know that this has happened to other women and I am wondering how you proceeded after being told that you did not have it. Is it possible I do and they have missed it? Am I just crazy? I understand that ibs causes similar symptoms but my periods have always been very heavy and long, with many clots, and painful for the entire cycle, up to a week after, and then the pains become worse one week before my period comes again.

Any assistance or stories from others are greatly appreciated. I feel so embarrassed, and lost and would like advice on how to proceed...

Thank you. X

7 Replies

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  • Hi you are not crazy. You know your body better than anyone else,so if you know something is wrong keep fighting till you get answers.

    Was your lap done by a general gynaecologist? If so it is very likely they missed it as they don't always recognise all presentations of endo, plus general gynaecologists only tend to look at reproductive organs I'd. Ovaries, tubes and outside of uterus. If you are having pain with sex then it is possible you have rectovaginal endo. You need to see a specialist. Have a look on the BSGE website to find a specialist centre near you, then go back to GP and ask for a referral to them.

    It maybe worth requesting the photos and op report from your lap. Then when you get to see a specialist they will be able to see for them selves what was looked at.

    Also search on here for a lady called Lindle and look at her posts on treatment pathways,and how to get a referral to a centre. You can also message her for advise . She is and has been invaluable to a lot of us on here.

    Good luck and if you need to talk I'm here .

  • Hi,

    Thank you so much for your response, it was very comforting.

    It was just done by a general gyno, and she showed me the pictures after... Indeed, she didn't look outside my reproductive tract.

    I will have a look at the resources you provided and will now try to get a referral to a treatment centre.

    Again, thank you so much xx

  • You're very welcome. I know how hard it is . I fought for nearly 30 years before I was diagnosed, as I knew from age 14-15 that something was wrong. Just wish I knew then what I know now.

    Hate the thought of someone else suffering the way I did with no answers or an end in sight regarding pain. So if I can help in anyway just let me know.

  • hiya. i had my first lap under general gynae after suspected stage 4. said they couldnt see anything when went in. (took minimal photos which were blurred) . symptoms persisted along with new ones. i got myself referred to a bsge specialist and following my second lap ive now been officially diagnosed with severe stage 4. i asked how could it have been missed and they said it appears that general gynae just didnt look beyond what was staring them in the face. they couldnt believe it had been missed as its so extensive. it has been a really long hard road to get where i am now. if u still have problems u need to push for another referral. u know your own body. i really struggled when they said my first lap was clear. it was really confusing. good luck x

  • I have been diagnosed with endo and had excision surgery, but I'm still in pain so I'm now awaiting a laparoscopy with a bsge specialist, as I believe the gyne has missed something, xxx

  • Hello,

    Been there got the t-shirt! Had my first lap in 2011 same story nothing there. Increased pain over the years pushing for referrals as issues with bladder and bowels- told it was IBS, sensitive bladder "some women have pain and we don't know why" "you're young go and enjoy your life" it's anxiety and depression.

    Had an MRI this year after going private and it showed something - referred on and last week I had my second lap with a consultant I trust, from the off he asked me directly what I had been going through. On the lap he said I was filled with blood and I've got endo pretty much visible everywhere. After speaking to him and then another consultant through my family links I've found out the unfortunately a laparoscopy is only good due to the person doing it!

    Not sure what area you live in but research specialists in your area as referrals are open and you can be referred to anyone you want- if it's NHS it's a choose and book system and how it should work is you choose unfortunately lots of GP's don't give patients the option and this is incorrect.

    It's hard but be persistent! Youre not alone xx

  • Thank you to everyone who has responded to this post-- your insight and stories have really reassured me and have led me to ask my GP for an urgent referral to a BSGE specialist. I will be seeing them in August (so much for 'urgent')...

    I am sorry to hear of everyone's pain and that they too went through a similar situation. I wish you all the best in fighting this disease...

    X

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