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It took nearly half of my life to receive an official diagnosis of endometriosis – 14 years to be exact.
If you’re unfamiliar, endometriosis is a condition in which tissue similar to the lining of the uterus grows outside of the uterus. If this tissue is present behind the vagina, or is stuck between the vagina and the front of the rectum, penetration can pull or stretch it, causing extreme pain.
Before I found a doctor who would actually listen to me, my quality of life was deteriorating quickly; the pain so intense that I couldn’t sleep, couldn’t use the bathroom without urinating blood, and could barely make it to the office.
After several visits to ‘specialists’, I finally received an answer: I was diagnosed with interstitial cystitis – a chronic bladder condition that causes excruciating bladder and pelvic pain – and endometriosis. After a laparoscopy, hysteroscopy, cystoscopy, and dilation and curettage I was diagnosed, but told there’s no cure – according to my surgeon all this will give me perhaps just one to five years of relief before I will need to have surgery again.
While I still have flare-ups, I try not to let endometriosis get in the way of my relationship with my husband, emotionally or physically. It took me a while, but I figured out how to navigate living with chronic illness without sacrificing my sex life. Here’s how.
“Sexually, we fell into a routine: he’d reach for me and I’d let him, wincing in pain and wishing it would end.”
We communicate with one another
Communicating with your partner isn’t as simple as it sounds – it’s more than debating which Netflix show to binge-watch next. Real communication means exposing your emotions and being vulnerable.
Before diagnosis, I was more of a ‘silent partner’. Sexually, we fell into a routine: he’d reach for me and I’d let him, wincing in pain and wishing it would end. He’d finish and fall asleep soundly, oblivious. Once I felt as though I could peel myself out of bed, I would tip-toe to the bathroom so I could lie on the shower floor in hopes that the hot water would heal my pain. Some nights, I’d stay there for hours. Then, I’d sneak back into our bedroom where I’d lie, writhing in pain and hating him for being able to sleep so peacefully, hating him for not realising what I was going through. How could he be so selfish? Why doesn’t he care about me? Doesn’t he love me?
Before I knew it we weren’t talking at all, and became emotionally and physically unavailable to one another. Once I realised that we might not make it to the altar, I had a mental breakdown. Sobbing into his t-shirt, I told him everything – from the demeaning doctor’s visits to the bleeding to the bloating. He was, of course, dumbfounded. He had no idea, and was confused as to why I hadn’t told him sooner.
Post-diagnosis, I’m straightforward and honest about whether I’m feeling well enough to be physical. It’s not romantic, but it works. The best part, though, is that now he’s verbal with me too. Being open and honest with him, I think, saved our relationship.
“There are nights where I feel fine one minute, and yelping in pain the next. Unfortunately, with my condition, this is just how it has to go.”
For us, ‘sex’ doesn’t always mean penetration
Once we were able to really open up to one another, our sex life went from no to oh! very suddenly. We began exploring each other’s bodies in a different way – some nights, it felt as though we’re having sex for the first time.
We quickly discovered that kissing, massaging, and playing with each other can be even more exciting than ‘going all the way’. Shortly after I had my breakdown (or breakthrough?), we spent an entire hour just kissing and it was so intoxicatingly delightful.
And on nights when I’m feeling particularly out-of-it, he’ll run a bath and just sit in the tub with me until I’m ready to get out. I position myself between his legs, prop up against his chest, and close my eyes. Even though he and I are quiet in these moments, I can still feel how much he loves me.
We have a drawer filled with toys
Whenever I’m feeling frisky enough to have penetrative sex, we pull out a few of my favorite toys to build excitement. When we’re ready, I’ll grab our Ohnut – an intimate wearable toy designed for people who experience pain during sex. If we’re feeling particularly lucky (meaning I don’t think a flare-up will come back to bite us immediately after), we’ll switch out the ‘standard’ vibrator for a clitoral sucking vibrator that offers a feeling that’s out of this world.
I’d be a liar if I told you this weird routine worked every time. There are nights where I feel fine one minute, and yelping in pain the next. Unfortunately, with my condition, this is just how it has to go. Sure, it’s not ideal, but it’s a hell of a lot better than lying in bed, backs to one another, silently screaming.
Before my diagnosis, I couldn’t have sex without feeling inadequate and heartbroken. Once I came to terms with the fact that I’ll have to deal with chronic illness for the rest of my life, we adapted, made small changes and things became easier. They became easier because I realised I needed to accept myself: burning urethra, endo-belly, and all.
Tabitha Britt is founding editor of DO YOU ENDO, a magazine on living with endometriosis.