The Most Common Disease You’ve Never Heard Of

It’s four in the morning and I am forced awake by the piercing pain — the pain I know so well. It starts and spreads all over my pelvis, then the dreaded, piping-hot dagger reaches inside of me, spreading the pain upwards through my abdomen and down my thighs.

Ah, yes — here we go again. I am alone and I know there’s nothing I can do but wait. I grab my knees, my hips, my tummy and rock back-and-forth and side-to-side like a turtle on its back, squirming around anxiously. I whisper multiple profanities to myself instead of yelling out. I toss-up between getting high in an attempt to fall back to sleep or waiting for the sun to come up. Throughout the day I will be drained and down from the flare-up, but I probably won’t bother talking about it unless I want to receive some perplexed looks and vacant stares as soon as my uterus is brought into the explanation.

Endometriosis is the disease that has made me feel as though I’ve spent way too much of my adolescence bouncing between different doctors’ offices and hospitals until I found someone who took my pain and I seriously – as a young woman who has to work pretty damn hard to be taken seriously in the first place.

Considering that one in 10 women suffer from this chronic illness, the number of times I’ve had to explain what endometriosis even is borders on ridiculous. The fact that there is so little known about endo, that there is miniscule support for people with it, the fact that the medical help I’ve received has been so very slow and often wrongly diagnosed and treated, and that those of us who suffer from this illness feel as though we have to stay relatively hush-hush about it because it has everything to do with our uteruses and vaginas has everything to do with the patriarchy. Try to prove me wrong.

Endometriosis is a chronic and currently incurable illness in which tissue very similar to that which lines the uterus (endometrium) is found growing in places outside the uterus, causing intense pelvic, abdominal, vaginal and lower back pain, bloating, heavy or irregular menstrual bleeding, acne, pain or discomfort during or after sex, low mood, gastrointestinal issues and increased risk of infertility.

They say that one of the many symptoms of endometriosis is depression and anxiety – as much as this could be a chemical side effect, I also believe it’s a result of the societal oppression we face as marginalised people who suffer from this illness (cis-gendered female, transgender male, non-binary and gender fluid) every single day. Put this oppression in a mixing bowl with a disease that affects the oppressed and causes us further pain and suffering, and I’m sure you’ll get one stinking wad of mental health problems – along with the physical ones.

Trying to be heard and respected as a woman in this patriarchal world can be difficult and painful enough (if you don’t agree, you are part of the problem), and trying to be heard as a woman crying out for help and support who is battling a condition that primarily affects women is even more unenjoyable.

In extremely rare cases, men can develop endometriosis too, with around 20 having been reported. It’s thought, though, that there are over 176 million women suffering from it.

It took me about four or five years of consultations, feeling invaded and being poked and prodded at to find a specialist to listen to me properly and to finally organise giving me a laparoscopy (keyhole operation) to diagnose me with and remove endometriosis, along with an ovarian cyst I had.

Endometriosis is thought to be incurable because after getting it removed, it will probably grow back, and most women get the surgery multiple times throughout their journey. After my surgery, I was expecting to feel relieved, but as I lay in bed munged out on morphine, tramadol, edibles, anti-inflammatories, anti-nausea pills and Panadol, I realised this was potentially only the beginning of my journey.

A woman that I actually know happened to be in the same hospital ward as me for the same illness and operation, which I realised after I woke up – and it made me feel sad and startled that so many women around me are suffering from the same disease and may not even know it yet. Why does living with endometriosis come with the stigma of being a complaining, over-emotional woman? Why does it have to seem like an unimportant illness sworn to secrecy? Why is laparoscopic surgery on one of the lowest priority lists when it will give one in 10 women all over the world the answers and attention they need to move towards living a pain-free life?

As an undiagnosed teenager, I felt so alone, unimportant and abnormal. I didn’t understand what was wrong with me and I thought I was the only one to experience this, or wondered whether I was being over-dramatic. At 18, one doctor told me that I’d really struggle to have children, and it ruined me. Another said I should be able to have children. This made me confused, sick and tired of all the running around and vagueness surrounding this disease that I couldn’t even be sure if I had or not — as the only way to find out for sure is to undergo the laparoscopic surgery.

Living with endometriosis has greatly impacted how I view myself. But it’s not just the disease itself that has made me feel this way – it’s also the male gaze and the conditioning I received as a young woman around the need for male validation to be considered beautiful. This may sound vapid to some, but it is indeed something I consider a pressing feminist issue.

I cannot count how many times I’ve adapted or changed my diet and lifestyle to try and tame the physical effects of having endometriosis (acne and bloating). I have spent god-knows-how-long examining myself and my endo-belly in the mirror during flare-ups, wishing my tummy size would go back down to how it is between flare-ups, freaking out about whether anyone will notice and resorting to wearing baggy dresses or oversized shirts to cover myself. I have spent far too many mornings getting ready for work whilst holding back tears and panicking because my skin got so ‘bad’ that I wouldn’t want anyone to look at me, or because I was so fatigued and sore but felt I had to push through in silence to avoid seeming dramatic. I retreated into hermit mode when it got bad, avoiding seeing anyone as much as possible — especially men.

Would I have had to feel this way if there were more invitation and a safer space in the world for women to talk about the issues we face that are for the most part, exclusive or more amplified to us? Would I have had to feel this way if it were more normalised to talk about our feelings and issues without judgement, no matter what gender we identify as? Would I have had to feel this way if our patriarchal society cared to put more time and research into women’s health issues, and to inform people about them?  Would I have had to feel this way if I weren’t so sick of being called an “intense, hectic, emotional, dramatic or hysterical woman” when I expressed feeling or anger in the face of prejudice?

If I could say anything to anyone struggling with endometriosis or other related health issues primarily affecting women, it would be that you’re certainly not alone. Fight for your answers; fight for your right to help, health and medical attention. It’s never going to be easy, but things do and will get better. Take care of yourself. I hear you, I feel you and I stand with you.

And to all those reading this who identify as men, please listen and please care. Make us feel safe and respected when we need to vent or ask for help. Please put in the small amount of effort required to set aside a few minutes to educate yourselves and others about endometriosis. Please help us to be heard when we are not being listened to or taken seriously. They will listen to you.

Cover by M.

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