There is more than physical pain associated with endometriosis, there is also emotional pain. Before even getting a diagnosis it can be frustrating and disheartening not to know what is wrong. As doctors repeatedly tell you that they can’t find anything, it can make you start to distrust your own body and the signals you are getting from it. Also, when you don’t have a diagnosis there is nothing you can point to explain your pain to others. It can seem less real to outsiders when you don’t have a reason to give.
Getting the diagnosis can also cause emotional pain. There is now the knowledge that you are living with a chronic condition that has no cure. Additionally, there is not much understanding of this disease. There is much the medical community does not know and the general public does not have much knowledge of endometriosis.
With a diagnosis there is a new normal that must be dealt with. Pain may always make daily life harder. Holding down a job and doing everyday activities takes more effort and may be impossible. Additionally, infertility can change the way a woman views herself and her future.
Treatment for endometriosis can also be painful and disrupt normal life. Ultimately, the treatments might not even be successful in the long-term.
Endometriosis has caused me emotional pain. Before I had a diagnosis it was frustrating and scary not to know what was wrong. The doctors would sometimes talk to me like they thought I was making it all up. I began to doubt myself. I began to wonder if I was making it into a bigger deal than it was. I thought I might be going crazy and it was all in my head. I also began to distrust doctors.
When I got the diagnosis I was initially so happy just to have an answer. But I soon realized that the medical establishment does not know a lot about endometriosis, and the general public knows even less. I would explain it to the people around me, but it grows tiring to constantly explain why you are in pain. I’m tired of always trying to justify myself. It is a lot easier to hide the pain from other people.
My idea of everyday life has also shifted. My day revolves around me figuring out where my limits are and trying to push at those boundaries when necessary. I live in constant fear of the pain getting worse and being unable to finish school or work normal hours in the future. I actively try not to think about living in pain long-term because it upsets me so much. It is hard to accept that I have a chronic incurable illness.
It is emotionally exhausting to live with endometriosis.