Normalizing My Endometriosis Pain
For years, I was told by doctors that my period pain wasn’t real. Or, at least, that it wasn’t as bad as I claimed. To cope with the pain, I pretended it wasn’t there. I ignored it and tried to live my life as normal as possible, even during my periods. I had normalized the pain so well that by the time I met my husband, I never even told him about my horrible periods.
My secret pain
When I was finally diagnosed with endometriosis – four years after my husband and I got married – it was by accident. The OB/GYN who had performed the surgery asked me whether I ever had period pain. My husband was staggered to learn that I always had severe pain during my period. He felt betrayed, because I had never told him this. He is a very caring man and would have loved to pamper me during my periods. Because I ignored the pain and pretended everything was fine, I hadn't been honest with him.
Changing coping mechanisms is difficult. Even after the diagnosis, I found it very hard to tell my husband when I was in pain. It was almost as if I thought I could make it go away by just ignoring it. And in a way, I really didn’t want to be defined by my endometriosis. I didn’t want to admit that, for parts of the month, I couldn’t fully function like a normal person. It was as if I would give the endometriosis more power if I gave into the pain.
How endometriosis impacted my marriage
My husband felt shut out. He wanted to make a fuss over me – bringing me tea, tucking me in bed with a hot water bottle – and while that is of course lovely, I didn’t really know how to deal with that. I didn’t want to start acknowledging the pain. And I know this is going to sound weird, but I also didn’t want to share the pain. It was mine and I alone knew how to deal with it. I get that it’s difficult for a partner to stand idly by when you know your loved one is suffering, but I was never able to get to a place where I could admit the amount of pain I was in and have my husband take care of me.
Endometriosis became a topic we didn’t talk about much. It was always there, but not until it became so bad that I was forced to seek medical attention did we really acknowledge it. In hindsight, I wish I had done things differently. Some of it wasn’t my fault: being gaslighted about my level of pain for years made it hard for me to really open up about it. But after I was diagnosed, I could have let my husband in more, allow him to fuss over me. I should have allowed myself to be less strong and stoic. After all, the “strength” I displayed was hardly strength, just denial.
Endometriosis doesn't come with a handbook
Endometriosis doesn’t come with a handbook. Everyone will handle things differently, but it’s important to be open about our experiences. Not only with fellow endometriosis sufferers, but also – and more importantly – with our loved ones. They may not be able to take away the pain, but they could make the bad days a bit more bearable.
Do you know what your endometriosis phenotype is?