My Brain And My Vagina Are Not Friends: What No One Tells You About Life With Endometriosis

My brain and my vagina are not friends.

I first developed symptoms of endometriosis around the age of sixteen. Before I was even able to decide who I was becoming as a woman, as an adult, let alone as someone living with an incurable disease. I have chronic, intense pain, with or without my period. I have suffered months of none stop bleeding and fainting because of the pain and the blood loss. After two and a half years, seventeen doctors, countless scans, tests, treatments, and one operation, I was diagnosed with endometriosis. Fast forward a few failed treatments, a trip to the United Kingdom to see a new doctor (I’m a dual citizen of Canada and the UK), some more tests and scans, and another nine months, and I have another diagnosis, this time with adenomyosis and endometriosis induced sciatica.

So, I’m nineteen years old, going into my second semester of college, and left with three different chronic pain conditions that weasel their way into my everyday life. I despise my diseases, they’re my worst enemy. Worse than my ex, the girls that talked about me behind my back at school, and the barista that never seems to get my order right. Endometriosis, Adenomyosis, and Sciatica, they’re the real villains here. I’ve already talked a lot about my story in speeches, on my own social media accounts, on my podcast and to my support group, but I’m going to get into something different now. I want to discuss how the chronic pain, bloatedness (it may not be a real word, but you know exactly what I mean!), and infertility these conditions have left me with has affected me mentally.

We live in a society where health is only talked about if it’s not taboo. You can talk about your broken arm but not your broken vagina. So first, I’m going to call that out. Vaginas are not inherently sexual, just like arms and legs. They can be attractive, they can and often do entice feelings of arousal, but I can talk about them without reference to sex as well. I can talk about vaginas, and it’s not inappropriate. So, I do. I talk about them openly and often, and some people don’t like that. I’ve been asked to take down videos of speeches I’ve made, posts about my pain and my story, and even the posts I’ve made about body positivity and living with chronic pain have been flagged, and that’s fine, but that’s not going to stop me. This stigma against women and their reproductive systems needs to be broken down, and I’m the girl for the job, apparently.

Another stigma that is alive and well in our society is the one that surrounds mental health. People generally understand when you’re physically ill. There are usually visual flags and symptoms of physical illness; weight gain, weight loss, hair loss, blood loss, the list goes on. But what about mental illness? What about the dark feelings of hopelessness and despair that creep in with depression? The nervous habits and panic attacks that go hand in hand with anxiety? What about PMDD (pre-menstrual dysphoric disorder, which is not the same thing as PMS/PMT) and all the irritability and suicidal thoughts that come along with that? Out of sight out of mind, unless of course its… in your mind.

So, what happens when your chronic illness starts to affect your mental health? What happens when you feel depressed, anxious, and suicidal because you’re in constant pain? Because the pain has killed your career, your social life, your sex life. Because your pain has caused you to drop out of university, and you can barely leave the house due to the pain. Because the various treatments, and perhaps the stress of it all, has caused your skin to break out and your hair to fall out. You’ve gained over twenty pounds, you don’t fit into your favourite jeans anymore, and the idea of wearing tight clothes makes you feel nauseous anyways. You start to get anxious about the future. Will anyone want me while I’m like this? Do I even want me? Will I ever be able to be “normal”? What is normal anymore? Do I want kids? Can I have kids?

And all of this is normal, but it isn’t. People get tired of hearing about your illness, and you get tired of telling them about it. You’re a lot younger, or older, than anyone else in your support group. So, you’re now stuck in your own head, wondering, worrying, stressing. It’s a cycle, a vicious, semi-self-inflicted cycle of pain and doubt. I have spent so many nights crying myself to sleep because of pain. Because of worry. I have avoided seeing people because my hair has been falling out, or my skin is bad, or because I am so bloated. I’ve cried over the children I worry that I’ll never have. I have felt unattractive, and unsexy, because of how this disease has affected my body. But I have also learned more about myself, and about being a woman, in the last year then the rest of my years combined. It boils down to the fact that I am a powerful, intelligent, strong, attractive woman who is sad, angry, and frustrated with my “vagina problems”. So, let’s talk about sad, angry, frustrated people with broken vaginas.

One, you are worthy of love and affection, regardless of your health. You are the same person as you were without the disease. You probably have the same interests, favourite food, and bad habits as you did pre-diagnosis. You are still just as badass as you were when you were healthy, don’t let that change. You never have to shrink yourself to be loved by the right people. Scream your story from the roof tops, blog, journal, express yourself, or just talk to some friends. You are also worthy of your own love and affection, no matter what that looks like. You are worthy of bubble baths, face masks, and long walks by yourself. You are deserving of one, two, or six helpings of your favourite meal. You are worthy of expensive sex toys, or drinking three bottles of wine, and of sleeping in until two in the afternoon. You are deserving of endless love and unconditional affection, despite what your illness leads you to believe.

Two, children are not the be all and end all of life as a woman. You can try for a baby, you may be in the percentile of people with “vagina problems” who can conceive. You can adopt, or foster. You can hire a surrogate if your funds allow. Or you can play with your friend’s children, then give them back and go and live your life for you! I have spent so much time obsessing over my fertility, about whether I’ll have the little girl that I’d always envisioned in my future. With curls and big green eyes, just like me. Turns out, when you start thinking about the broader horizon of life, you can find other ways to be “fulfilled” without having offspring. I’m not saying that I’ll never have children, because I’m not in the place in my life to be concerned with them. I’m concerned with finishing college, finishing my first book, and saving up to travel Europe. The way that this disease pushes so many of us to worry about our fertility before we really have time to consider what we crave out of life is ridiculous, and I’m calling you all out for it right now. How are you meant to raise a child if you haven’t finished developing yourself? Would you be concerned with having children at this point in your life if you didn’t have this disease? If the answer is no, you may have some things to consider.

Three, you are not alone. Endometriosis alone affects ten percent of women in the world. One hundred and seventy-six million women. That’s a ton. And that’s just endometriosis, never mind all the other women living with painful gynaecological conditions like vulvodynia, polycystic ovarian syndrome, vaginismus, adenomyosis, and so on. That’s too many women to feel like you are going through this alone. Too many to be worried as to whether people will be grossed out if I talk about how I’ve been hemorrhaging for months and months on end. To be embarrassed to get a pad out of my bag and carry it to the bathroom without taking my entire purse with me. Too many women to feel like I’m out here suffering all by myself. Considering ripping out my intestines and knitting them into a scarf or wondering how long I’d survive if I performed an at home hysterectomy with my dad’s steak knives. Ah, so many options, such low likelihood of survival. C’est la vie.

Four, stop letting endometriosis affect your sex life. You’re incredibly bloated because you have an incurable disease that causes inflammation. That makes you no less of a sexual being. If you don’t want to have sex because of the pain, or because your current treatment/medication has murdered your libido, that’s fine, one hundred percent fine. If you don’t want to masturbate, because of the pain, or your personal beliefs, that’s alright as well. You should never feel obligated to have sex or sexual experiences that you don’t want to have. But stop letting your bloated stomach, your feelings of insecurity or inadequacy, and a little blood stop you from getting jiggy with it. First of all, a little blood never hurt any body (unless you have some type of transmittable disease as well, in which case you should deal with that first, obviously!). But if getting your red wings just isn’t your thing, there are these great inventions called soft cups. They’re like little cups that sit at your cervix and collect all the blood so you can have the orgasm of your dreams and not have to worry about you, your partner, or your bed looking like part of a murder scene. Also, if you don’t want to be penetrated but still want to have some sexy fun time tampons (if you can use them!) are an idea to consider as well. Secondly, lingerie comes in all shapes and sizes, so if you’re not comfortable in your own skin at the moment, cover it up with some lace, silk, cotton, whatever you feel sexy in. Thirdly, and the easiest of all the sex-solutions I’m going to offer you, just turn the lights off. Flick the switch, and bam, are you slender, bloated, muscular, purple? Who knows, because now you can’t see a damn thing, and no one is the wiser as to what’s going on. You’re welcome.

Fifth, and most important on the list, be kind to your mind. I’ve said it more than once before, and I’ll say it more than once again, but you are legitimately the only person who will ever have to put up with you, so you may as well be nice to yourself. We are most often our own worst critics, and that’s wrong. Why is it, when we experience first hand the physical symptoms of the physical disease, that we have no time or patience to deal with the mental consequences? You had to learn how to walk, speak, and use a damn spoon for God’s sake. So, give yourself a minute to learn how to do all those things with endometriosis. Learn to call in sick to work or school when you wake up with pain so bad you see stars and feel nauseated. Understand that while you are the same intelligent, motivated, sexy, badass woman that you were pre-diagnosis, this is a learning curve. This is your life now. So, whether you take thirty medications a day, smoke weed, masturbate, soak in the bathtub or whatever it is that you do to feel a little more normal and relieve your pain day to day, if it helps, it helps. I’m not here to judge you, so why are you judging yourself?

If there’s one take-away from this entire article, it should be that with great pain comes great changes, and that’s okay! Your mind is struggling to keep up with a body that is self-destructive but is not suicidal. Your body isn’t trying to kill you, your body is trying to fight off an incurable disease twenty-four hours a day, seven days a week. You are not alone in this. Your vagina is suffering and it’s okay to cry, scream, or laugh. It’s okay to talk about your vagina. Your mind is suffering while trying to keep up with the agony, the loss of sleep, the loss of blood, the overflow of emotions, and everything else that comes along with endometriosis. It’s okay to talk about your endo. Make sure that you know your pain is real, it’s not in your head, and you need help. Get the help you need and get on with your new life. Because you don’t deserve this, but you’ve got endometriosis, endometriosis doesn’t have you.