What It’s Like To Live With Endometriosis: “I Was Told The Pain Was In My Head”

“Bojana, they’re ready for you on set,” a voice from outside the trailer beckons. 

“Okay — I’m just shitting, but it might take a moment because it feels like there’s a knife stabbing through my groin!” Said no actor ever to the PA.

In reality, I shout, “One minute!” from atop the freezing trailer toilet. I know it’s going to be longer. I’ve been sitting here for ten minutes already, trying to get some movement going. The pressure of having to be on set only makes it more difficult. Now it’s a choice between being late or being in discomfort all day. How long do I realistically think this is going to take? I ask myself. Too long. Today — like most days when I’m faced with this decision — I choose the discomfort. 

The few times that I choose to be late instead, there are repercussions I prefer to avoid. “Hey Bojana, we’ve noticed you’ve been late to set a few times this episode,” my boss might say. “Is there something we can do to help?”

“Yes, please! My vagina hurts. Can you fix it?” Said no actor ever to her boss. 

But in my fantasy, I go on: “I work 16-hour days,  I don’t get enough sleep. As a result, my body doesn’t repair properly overnight, and so this inflammatory condition I have called endometriosis just gets worse. It has grown in 13 places throughout my abdomen, all the way up to my diaphragm. It has obliterated the cul-de-sac between my womb and colon, causing my colon to sit at a right angle to my cervix, which — by the way — is pushed all the way to the left. So I have horrible constipation during my period, and when I can pass a bowel movement it’s incredibly painful. But I’m sorry. We’re talking about me being late to set.”

Obviously I never said that. Not because I didn’t want to. But because I had none of the medical knowledge to understand what was going on with my body. I thought all that pain was just a part of being female. In fact, that’s what I was told by medical professionals.

Endometriosis is an inflammatory condition where cells similar to the endometrium (the lining of the uterus) are found outside the uterus. It can cause, among other issues, pain in the lower abdomen, lower back, rectum, vagina, and pelvis.

This was pain I’d experienced for over two decades. But until recently, I didn’t know why I had it. As a teenager I was told it’s normal for girls to have painful periods. (Spoiler: It’s not.) When I became sexually active I was told it’s normal for sex to hurt. (Spoiler: It’s definitely not!) After a laparoscopy in 2005 came up negative for endometriosis, I was told the pain was in my head, or that sex hurt because I was uptight, anxious, or small. Everyone I turned to pointed the finger back at me, and so the more pain I was in, the more I worried that I was doing something wrong. My anxiety increased. This cycle of confusion, pain, and discomfort wreaked havoc on my mind, body, and central nervous system for over 15 years.  

In November 2017, I started to experience severe lethargy and intestinal pain. After six months of testing, I was diagnosed with SIBO — Small Intestinal Bacterial Overgrowth — which, like endo, is an inflammatory condition. By that time, I was also seeing a physical therapist specialising in pelvic pain during sex. Both the GI doctor and the physical therapist suggested that I see a gynaecologist who specialises in endo excision surgery, proposing that SIBO and the other symptoms I was experiencing could be from long-standing endometriosis. 

The only way to actually diagnose endometriosis is a biopsy, and since this specialist was convinced that it was endo, we agreed on surgery. Five incisions and thirteen excisions later, I was officially diagnosed with the condition.

It was a bittersweet feeling to finally name what had been ailing me after so long. On one hand, it was a relief because I could finally take action. On the other, it was hard for me to wrap my mind around the fact that medical professionals got it wrong for so long and that I should have listened to my body. 

Endometriosis can feel overwhelming. The condition doesn't just affect the pelvic region. The body's response to the inflammation it causes sensitises the central nervous system and that can cause emotional symptoms too, like anxiety. If you don’t know what’s going on — like I didn’t — this sensitisation messes with your head. If your head is not right, there’s a good chance you're in distress. This is where endo crosses the line from a physical ailment to an emotional and spiritual one, too. 

Since endometriosis is a multifaceted condition, recovery is multifaceted too. Before my surgery I went on a very strict anti-inflammatory, low-acid, low-potassium, dairy-free diet. This almost completely curbed the random burning pelvic pains. 

I also saw a therapist for my anxiety. In therapy, I realized that my recovery hinged on not just following diets and procedures, but also on being honest about my pain — first with myself and then with my partner. In relationships, I often strove to be a super-human, super-cool, I-can-do-everything girlfriend. After my diagnosis, I made a huge change. I never pretended that I was physically better than I actually was. 

I didn’t like this idea at all. I was afraid that constant transparency would lead to an over analytical and awkward sex life. But actually, it became the most enjoyable sex life I could have imagined. Vulnerability bulldozed the embarrassment out of the bedroom and I was able, for the first time in my life, to have pain-free and, frankly, awesome, sex. This also had a lot to do with the openness of my amazing partner who came along for that ride and taught me a lot about self-acceptance. And so one of the most shameful aspects of my life turned into the most strengthening and rewarding. 

Following surgery, recovery took some time. Physical therapy focused on the pelvis, and about two months after the surgery I had my first pain-free bowel movement during my period in more than a decade. It's one of those little victories I can't scream about on the subway, but it's a big deal to take a dump without feeling like a knife is stabbing you through the groin and you want to vomit all over your bathroom floor.

Today, a year after surgery, the pain comes and goes. It depends on how I eat and sleep. But now I have an open dialogue about it with those closest to me, and that is a game changer. 

For me, a huge part of my problem was shame. The symptoms of endometriosis were embarrassing to talk about. I didn’t want to tell anyone that my nether regions ached, that sex was painful. I thought I was weak.

If your shoulder hurts, you can tell anyone without them suspecting you have an STI, or a deep-seated psychological trauma. (I have that too but it’s got nothing to do with my endo.) But who wants to talk about a sore vagina? I preferred generalisations such as “pelvic pain” or “pain down there.” I didn’t want my vagina to be vulnerable. I wanted it to be a powerhouse of passion, like Janelle Monae’s glorious trousers!

Still, I’ve come to learn there’s power in talking about it. Endo might be an “invisible disease,” but that doesn't mean that the people who suffer from it must also become invisible. It's important to destigmatise pelvic pain, so that we can talk openly about solutions. After all, if I had heard someone talk about it when I was a teenager, I might not have lived in all that pain for nearly 20 years.

Born in Yugoslavia and raised in Australia, Bojana Novakovic is an actor who is currently directing her first feature documentary, The Forbidden Aunt. The opinions expressed here are her own.