Diagnosing Endometriosis

How utterly frustrating to get such conflicting advice! It is understandable that you don't know what to do next. One thing I do know is that having a baby does not necessarily ease pelvic pain, so I would take that advice with a grain of salt. It doesn't always make intercourse easier either.


I find it so hard to believe that you never had endometriosis or adenomyosis after having previously been diagnosed with them, especially during a laparoscopy. I would question the most recent doctor's information...did this doctor look at the report from your surgery and MRI and come to this conclusion? It doesn't make sense to me.


My suggestion would be to find someone in your area who is an expert in endometriosis. Are you in the UK?


I would also suggest finding a pelvic PT who could help you with the pelvic pain. Endometriosis can come back after surgery, so it's possible this is happening for you. Pelvic physical therapy is often quite helpful for people.


Of course, the issue could also be with your bowels, and so the diet changes might be of benefit to you. But I just have a hard time believing that you never had endo/adeno in the first place.


I wish you luck finding a better practitioner who can help you figure out why you're experiencing this pain! ~Katrina, Endometriosis.net Advocate

Thank you, yes I am in the UK, I still have the paper work saying I have endometriosis and it was removed during surgery, the doctors claiming I never had it was the one who done the operation, but before the op she said to me you have the coil it wont be that but on the pictures it clearly shows spots of it.


My nan thinks she is one of them who doesn't believe endometriosis is a real thing or doesn't want to admit that she was wrong, I have a family medical history of endo too, including my mum, nan, aunties, great aunties and cousin, so I strongly believe I had it.


Hopefully I can find an endo specialist soon and get some treatment if possible.


Again thank you so much!

oh my goodness. How frustrating. SO very sorry you have had to deal with all of this. The pain, the symptoms and the confusion of what the heck is actually going on! It is angering how unskilled and unknowledgeable doctors truly are when it comes to endometriosis.


Firstly, absolutely agree with Katrina, having a baby is not always the go to treatment. Not only is that a big responsibility and life change to offer someone as a treatment, it also doesn't mean it will treat and cure endometriosis and the pains and symptoms that come with it.


If you had surgery and they diagnosed you with endometriosis and said they removed it, it is more than likely you definitely do have it. At least in my personal opinion and experience.


Of course, endometriosis is super tricky, and it could interfere with your bowels too. So there really are so many different scenarios and possibilities as to what it could be. I haven't tried PT before, but I would agree with Katrina to maybe look and see if you can get in to try something like that. I have heard great things from so many who has done it.


You can also look at Nancy's Nook - it is a FB group- she provides endometriosis specialists that you can search for in your specific area. I believe she does have a list for the UK.


This doctor you are dealing with definitely does not sound skilled enough in endometriosis! Especially if you have a family history! My sister and aunties all have endometriosis too! That was what provoked me to have surgery to get my diagnosis. I know I am not a doctor so I can't medically say you have it, but just from reading your experience and symptoms and history, it definitely sounds like you do.


Keep on fighting for answers until you find someone who can help you! Fingers crossed you find that someone soon. In the meantime, do reach out anytime you need anything. We are here for you. And keep us posted on how you are doing too! Big hugs to you <3 -Kimberli (team member)

Thank you so much for your time, I have joined the group on facebook and hopefully can get some links and help there, and hopefully I get some answers too and will be happy to help or talk to anyone in the meantime and from now onwards.


Thank you all x