No endo found so what the hell is causing my pain?

Since the age of 13 I've had the worst periods imaginable. After having children my period pain has gotten better but I know I have abdominal pain and nausea vomiting. I've been told by a few different gynos that it is most likely endo. I had my first laparoscopy today at age 31 and no endo was found. I have every sign and symptom of endometriosis. Has anyone else had this happen? I've waited years for answers and feel so lost.

15 Replies

  • Yes this happened to me a few weeks ago and I'm currently sat here with the worst pain in my groin after finishing my period. Other ladies on here have told me that they kept pushing for answers and that on a second lap there was endo found. I feel quite lost tbh and don't know where to go from here. I feel like my gp will just think it's all in my head 😐

  • Often there is endo but it is not seen, does the gynae know what he is looking for? Sometimes it is microscopic, remember the amount of endo does not relate to the amount of pain. Have you tried cutting wheat and gluten out of your diet - research has shown that 80% of sufferes get benefit from avoiding wheat and gluten. Give it a try for a couple of months, it must be better to try something on your own while you are waiting for another appointment. If you are stuck look at

  • That's interesting. Can you direct me to the evidence that 80% of sufferers benefit from avoiding wheat and gluten.

  • Not sure what evidence ccfd9 was referring to but i remember reading the same thing in a few books (i think the one by dian shepherd mills and the recipe book by carolyn levett). I dont remember if those statements were based on any research or simply anecdotes. In anyncase, I thought it was worth a try so i tried it. It didn't help me with pain at At all. But i am giving it a few more months because i want to lose weight and atleast this is forcing me to include more vegetables and fruits in my diet.

  • Do you have the full text. It would be interesting to know what type/stage of endo was tested and how it was established that the pain was caused by endo and not for example IBS caused by gluten intolerance.

  • Hi hunny, was you seen in a bsge specialist centre or general gyne???

  • General gyno

  • General gyne often miss endo in certain situations, so if you carry on getting symtons that point to endo , I would request a second opinion, and find a bsge specialist centre near you and get refferal from your gp,

    Good luck

  • Hi have a look at my previous posts, I am in exactly the same boat as you are. Message any time x

  • Yep same happened to me 2 weeks ago wasn't found when I was told it could be that too , they found some like veins in my pelvic which where swollen but told could do nothing about them as too dangerous , also my bowel was abit twisted and stuck I'm a bit confused with it all and no proper explanation , I'm no better knowing why all this pain in my pelvic , keep pushing don't give in X

  • Unfortunately this seems to happen so often. I had my first lap about 6 years ago and no endo was found and I felt exactly the same as you... I was pretty sure that all the symptoms of endo fit and that's what it was an after getting told it wasn't endo (and probably IBS... grrr!) I was completely lost. I actually end up giving up for a while thinking it was all in my head and just period pain and that all women probably felt like this. However, the pain was getting progressively worse and so I had to go back again... I was referred for another lap which I had on Saturday and endo was finally found! Don't give up - you know your body better than anyone so please keep trying to get some answers and maybe try seeing a different specialist (I think that's what helped me!) x

  • The most important issue at this stage is to try and establish that your pelvis was thoroughly searched at your lap. Very often in a diagnostic lap they can miss endo and/or not look far enough. I suggest you get a copy of the report sent to you GP (give it a couple of weeks) and let's see what it shows. This should give a good idea of how thorough the lap was.

  • I think one of two things - some people can have very bad periods without an underlying cause OR endometriosis can be in places that cannot actually be visualised easily for example actually inside organs and another laparoscopy or other procedure may be carried out if symptoms continue. Less commonly the endometriosis can be in areas away from the reproductive system like the GI tract or lungs. I believe they don't often look at those in a routine lap.

  • Oh yes Court28

    I was told for years it was in my head.

    And why do you get pain when I don't or others don't

    Get on with your life some just accept the lot as a woman and you have pain

    And my personal favorites

    " your probably hurting when you pee because your not sitting on the toilet right "

    Mom in law

    And when the next baby wasn't happening

    " your probably not getting pregnant to keep my son safe from being called to war "

    "Yes dear mother in law "

    You must be right . I'm in tremendous pain every month .

    And ya what if I got pg and it was a boy "

    " I'm sure you are right and I need to make the sacrifice for the youngest of your four kids"

    Those things and stings and damn stupid ass remarks are always buried deep in my brain

    I hate they said those things

    I hate even more the fact that I still feel the sting of the pain

    Mostly I don't think about it these days

    It was years and years ago

    But famiky friends doctors and neighbors , just don't do and say the right things.

    They can cut with knives and leave us with scars that are worse than endo .

    They don't mean to .

    They are trying to help

    They have just not stood in your shoes and do not have enough empathy to get anyone else but their own stuff

    So no a dr does not have the right to look at you and say things that he can not see

    There is no easy blood test so they would rather keep their pride in their DX than care about you .

    So when you go back

    Do what I wish I had done

    Ask him where he got his X-ray vision?

    And ask him how could he say that when every woman is different in symptoms and severity.

    Because they can not be sure

    And need to be told they can not know that

    Don't worry about hurting your doctors feelings.

    Their feelings are not in the equation

    And who cares about their feelings

    Put on their big boy pants and face it if they wrong or don't know .

    We spend way to much time worrying about how our doctors will feel if we hurt their egos.

    If their egos are that fragile then it's time to leave

    It's not your issue

    I don't know if you have endo or not

    But the doctors don't either

    And just because you bring it up first gives them no right to puff out their chests and declare


    No dr

    How dare you ????


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