I understand this may be a controversial topic, but it’s a real question I am struggling with. I have seen several posts lately on this and other forums where people are stating they have been told they don’t have endo, some with imaging, some with actual pathology. And on every post, the majority of people responding are basically hyping them up to believe they have it anyway. I get why: most of us have been gaslit to hell and back before getting our diagnosis. I am in the same boat, and I absolutely still remember the rage-relief I felt at finally getting a diagnosis after nearly 8 years of knowing something was wrong and having multiple doctors make me feel like it was all in my head. My surgeon was appalled that I was diagnosed with a rule out condition (IBS) when I had deep infiltrating endo so severe that they found it everywhere and had to remove a segment of my colon that they couldn’t save by the time they operated. So I get the extreme distrust of doctors in our group. But what about the other extreme? There are obviously going to be people that are checked for endo that legitimately don’t have it. It is so easy to latch on to something that seems to make sense when you don’t have answers, but that doesn’t mean it’s right. This really struck home for me recently when a friend came to me afraid for her daughter. She had never heard of endo before my diagnosis, but she remembered when my symptoms first started, and her daughter had been ill for over a year and had developed a lot of the same symptoms. I urged her to see an endo specialist, and while I made clear that it didn’t automatically mean she had it, her daughter became absolutely convinced she did. And I acknowledged that doctors had missed mine for years, even when the symptoms were obvious. But here’s the thing: she doesn’t have it. Luckily, the endo specialist was able to point her to the correct illness, and she was diagnosed shortly thereafter. But I have no doubt that if the doctor hadn’t had another answer for her, she would have been convinced she had it, and she would have pointed to my case and others online would have told her how frequently it is missed. Encouraged her to keep going on this diagnosis. She may have even had a completely unnecessary surgery that could have caused her actual problems. So how do we balance our own collective experiences of medical gaslighting against the fact that not everyone who thinks they might have endo does? Should we be encouraging people to believe they have it when doctors tell them they don’t? Because sometimes they will have it, and sometimes they won’t, and how do we avoid going too far to the other extreme?   submitted by   /u/Due_Competition9105 [link]   [comments]