SPILLING THE TEA ON BEING A SPOONIE

Words by Teddi (he/she/they)

The last thing I’m thinking about when I’m in a pain flare is sex. I’m usually so out of it from painkillers that I don’t really know what’s going on. The only people who can touch me are doctors, and even then, they are on very thin ice. I tend to remove myself and hermit until the worst of the pain is over.

I’ve had someone straight up ask me if I can have sex when they found out I’m disabled. The answer is: sometimes yes and sometimes no.

People with endometriosis often tend to find sex painful, as endometrial tissue can grow in or near the vagina. Endometrial tissue grows most commonly in the pelvic area, but has been found on every major organ in the body. Endo is a whole-body disease. Even though I no longer have a period, it still has a major impact on my life.

Sleeping with someone new always begins with a discussion about boundaries and how I might have to stop with little warning. Nothing is a better mood killer than unwanted pain. Everyone so far has taken the boundary talk really well, but some people can take it personally when it has nothing to do with them. I understand how it can feel personal when suddenly, I can’t be touched in any way, shape, or form. My life would be so much easier if I was in no pain. Except then, I’d be permanently horny.

For a time, I had little interest in sex because I was incredibly depressed from being in pain all the time. While I’ve heard many people say antidepressants kill libido, I absolutely cannot relate. I finally understood what all the fuss was about as soon as I got a little bit of serotonin.

Through trial and error, I found out that I am very allergic to a lot of different types of birth control. I was nearly killed by two different types and am now on one that only recently came to NZ. Birth control helps manage endometriosis, but it doesn’t stop it from growing. I am terrified to go off it in case it has gotten worse and spread to other organs. When someone with endo has a period, all the endometrial tissue bleeds, even if it is outside the uterus. I was only released as a patient from the hospital late last year if I agreed that I will not go off birth control. If I ever do, I would need to be referred to the hospital again and I would require surgery again to remove the tissue that has grown back in places it shouldn’t be.

I still recommend to everyone with a uterus to be on birth control. I was a super rare case, and if you are of the 99% who aren’t allergic, then it’ll be fine. Birth control gave me back weeks of my life that I otherwise would spend bedridden and throwing up from pain. I still get pain flares and have scarring on some organs, but I can almost live a normal life.