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