Every time I'm feeling sick, in more pain than usual, or that something is wrong with me; I immediately think that I am overreacting. I could be in so much pain that it is pointing to something seriously wrong, and in the back of my head I'll think I'm crazy.
Before getting an Endometriosis diagnosis, many of us have seen countless doctors (whether in an office visit or at the ER) and they always ended the visit with the same thing: "Well, everything looks normal". At first, I would get mad. I would get sad. I would be upset that the doctor couldn't figure out what was wrong. But then as you're leaving the ER with tears in your eyes, you start to think: "You know what... maybe I am just crazy".
Going through this so many times causes mental trauma. So much, that even after a diagnosis, it doesn't go away. Hell, it doesn't even get better. Because having an invisible disease doesn't help the matter. Because even if you know you have Endometriosis and you know it is causing you pain, the next time you see an ER doctor, they won't take you seriously. They'll fill your head with misinformation that the disease shouldn't cause you this much pain or that surgery should have cured you. They'll tell you that it's most likely in your head... again.
So even after going through finding a doctor that believes you, will perform surgery and will prove to you that you were right... people still doubt you and then you will doubt yourself. And that my friends, is the monstrous source of this mental trauma.
It took me 7 years to get a diagnosis. I can't even count how many ER visits I've had, let alone how many doctors told me "Everything looks normal" "I don't know why you feel like this" "Maybe it's all mental". Then I finally made some headway and an ER doctor told me about Endometriosis. After seeing a gynecologist that told me her PCOS was worse than my pain, I found another doctor and he was willing to perform surgery. He believed me. And like we thought, we were right and I had Endometriosis. But of course, I ended up in the ER many times after that because well endo sucks. And still, so many doctors have told me it shouldn't cause so much pain, that I had surgery and I shouldn't have pain anymore, and once again, that maybe it's all mental. So obviously, being told this so many times is going to affect you. You can't catch a break. Doctors are telling you it is in your head before and AFTER a diagnosis. Like what???
But for me, it doesn't even just stop at Endometriosis. Two years ago I started to suffer from chronic kidney stones. I ended up having 2 stones stuck together and they were obstructed. I needed surgery to remove them. Do you know how many times it took the ER to believe me? 7 ER visits. It took 4 visits before they did any kind of imaging. And 7 before they actually wanted to do something about it. Us women, especially with Endometriosis, are constantly being gaslighted. It's like doctors think we are psychotic and started a super-secret group and decided to all act like we have the same symptoms and the same issues, but it's all fake. Oh, and the Endo Specialists are obviously in on it too.
I have to constantly remind myself daily that my pain is valid. If I let my mind eat away at me, I start to believe that I'm crazy. I start to think that I should have been cured. I shouldn't have this much pain. I shouldn't be on daily pain medication. So much, that even yesterday I found blood and a piece of a kidney stone on the toilet paper when I used the bathroom, and I still don't believe that I'm passing a kidney stone. I am positive that I must be wrong.
Now I hate to say that this is not some magical article that will help you face your medical mental trauma. But this is honestly just to inform others on how Endometriosis has affected me and MANY others.
This is what we deal with daily.
We have crippling anxiety when it comes to facing a new doctor or going to the ER.
We don't believe ourselves.
We are going against our instincts and trusting doctors that are misinformed.
We aren't even trusting ourselves.
No, it's not fair. No, it's not right. But neither is this debilitating disease.