DISCLAIMER: Once again I would just like to make it clear that I am not a medical professional and this piece is written purely from my own experiences so far. For anyone looking for more help and support on these issues I will link a really good website at the bottom of the page.
Also, while I’m doing the disclaimer thing… The “you” I refer to throughout this ramble is a compilation of several people and experiences I have had over the past few years… So for anyone I know in real life- no need to go pointing fingers 🙂
Nothing gets my inner feminist going more than the literal fire that rages through my abdomen whenever it damn well pleases. I hate to be “that girl” who goes on about her period… In fact I hate it so much I have put myself through years of silent hell in an attempt not to be “that girl.” But recently I have realized that just like mental health desperately needs to be talked about, so does women’s health. There are so many of us fighting generations of stigma and ignorance over issues that I’m pretty convinced society would have a lot more sympathy for, and medicine would have a lot more answers to, if they affected people with dicks (yea sorry, I’m about to be “that” girl.)
I would love to see how much more we would be hearing about problematic periods if it were men whose penis’s started leaking blood every 4 weeks. They haven’t been conditioned to suck it up and deal with it quietly like women have for generations and generations. I’d also like to see how much more we would know about illnesses like Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome, and the many more women’s health issues that we are yet to understand.
See I always thought I was a pretty tough girl really, I have torn tendons off bones, squished multiple vertebrae together in my back, and had a pretty decent couple of concussions. But all this pales in comparison to the cramps I get at least once a month- usually more. I have walked around with a torn achilles tendon and multiple stress fractures in my ankle thinking- “hmm, yea this hurts, but it isn’t as bad as my cramps so I guess it’s nothing…” When I did complain about period cramps to my GP she put me on the contraceptive pill. Like every other “treatment” I have tried since, it helped for a while, but the cramps slowly crept back up to ‘writhing on the floor in pain’ levels before long.
And then I started having sex… No one had ever warned me sex could be so horrifically painful. It felt as though something was bursting deep inside me, leaving me light headed and sick- and not in a good way! But this was hardly the kind of thing I felt I could admit to anyone, how embarrassing! I just hoped if I kept going through the motions I’d get over it eventually. When I did admit this issue to my GP she told me I was just nervous, it was just my anxiety playing up. I knew this wasn’t true, but what else was there for me to do about it?
Much like my mental health story- I know I am not alone in this (though it sure feels like I am!) As it happens the illness I am struggling with, Endometriosis, is a disorder of the uterus that effects an estimated 1 in 10 women in New Zealand alone. In a nut shell it is an auto-immune disorder that causes the tissue that lines the uterus (and causes our periods) to start growing elsewhere… On ovaries, bowels, the bladder, even on lungs. It can twist your uterus in knots, glue your insides together, and grow into massive bloody cysts. Symptoms include abdominal cramps (not necessary limited to that time of the month either), infertility issues, bowel issues, painful sex, bloating, random bleeding, the list goes on… But none of this is a given. Really it seems when it comes to the uterus, nothing is a given.
The past few years have been a silent, lonely, painful and demoralizing battle for me. I have been trying desperately to get on with my life but day to day living can be so hard sometimes. Relationships have become impossible for me to maintain. And there is a constant looming fear of infertility nagging at me and the deepest part of my self-worth.
In another world maybe it would be OK for me to be so deeply affected by these things. But today it is an awkward conversation no one wants to have. A silent disease better left invisible. Well screw it, I figure if I can talk about suicide on the internet, then I can damn well talk about periods, sex, and the intense, deep, explosive pain haunting my life, my intimacy and my self-worth. There is so much ignorance and stigma and taboo around these things, but I have finally decided I shouldn’t have to be so deeply ashamed and embarrassed to speak up about my pain and my struggles.
So for all the times I have slipped out a grunt that didn’t suit my femininity because the stabbing in my abdomen caught me by surprise. Or broke down in tears because one moment I was walking down the street of a new city, and next a pain exploded inside my belly that seared into my chest and down my legs causing my knees to shake. Or maybe embarrassed you by talking too loudly about the blood seeping through my knickers unannounced, in a public place, too far from any restrooms. For all those times, I just hope you have thought about how much composure you could maintain if at any moment your appendix felt as though it had burst and your penis began leaking fluids through your underwear. What would you do knowing that those that knew were perhaps concerned, but ultimately clueless and uncomfortable and waiting for you to sort it out, again?
For all those adventures I have been so excited for, only for the day to arrive and be clouded by that deep familiar ache. Knowing my fun will have to be thrown into the ever-growing pile of cancelled plans, or at best stumbled through with gritted teeth. All those sleepless night of aches and pains, having to roll out of bed in the morning as though nothing is wrong because I have already complained about cramps too much this month. It’s hard to stay happy and positive when it feels as though all you can do is simply endure life instead of enjoy it, if not just simply withdraw from it altogether. How long could you keep up a positive attitude if every time you planned something fun you were inevitably struck down with the flu?
And for all those times I undressed for you and became so afraid of that horrific stabbing pain returning when the situation was already beyond my control. I’ve gotten far too used to shoving a tampon into my aching insides after fucking, knowing I will bleed, and ache, and spasm for days as a consequence of simply having sex. I’m in my 20’s! I want to have sex and be able to enjoy it. Instead it’s just become another painful and terrifying thing I have to endure. Another reason for me to doubt myself, and another failing my anxiety loves to remind me about. I would like to see how well you would manage if sex was more painful than it was enjoyable, but still an expected part of your role in a relationship all the same.
I feel confused and in many ways more alone in this battle than I do in my battle for mental health. Endometriosis and the uterus in general is so poorly understood that doctors often have no clue what they’re talking about. You tell me to go back to the doctor, as though I haven’t been battling the health system for years already. But here I am again looking at my pitiful choices… I’ve been told my options for “treatment” include going on the pill, trying an IUD, surgery to have the excess endo removed (and more than likely grow back), having a hysterectomy, or getting pregnant. Yes, some of these things have worked for some women, to some degree, some of the time, but more than often they have not. Women have had their entire uterus’s removed only to have the endo continue to haunt them. At 22 years old I have tried the pill, multiple pills at that, and while some helped for a while, others just made my ordeal even worse by giving me severe cases of depression to add to the mix. I’ve tried the IUD (mirena), a painful ordeal in itself when your uterus is all twisted and screwy. And while this got my never-ending heavy bleeding under control it has done little for the pain. Meanwhile, I’m not planning on getting pregnant anytime soon (what kind of medical advice is that anyway??), and I definitely don’t like the sound of giving up my uterus (and any future chance of pregnancy) anytime soon either. So surgery it is. And I only have to hear the stories from a few women around me to learn that this could likely be a futile effort, and at best just another temporary fix.
Of course I am an anxious mess. For years I have been told the pain that eats away at me is a shameful secret not to be shared. The hot bloody messes that I wake up to are a failure on my part. That sex, the ultimate sign of youth and intimacy and love, is something I am not good enough for. The children I so badly want to bring into the world one day, I may never be able to carry. It eats away at my self-worth and woman-hood more than I can bear to explain.
So I’m sorry for being “that girl.” Sorry for all the spare knickers you had to grab for me, the tampons you have had to buy me last minute, and the wheat bags you so often had to heat for me night after night. Sorry for our dismal sex life. Sorry for the public breakdowns you have had to weather, and these rants I so often started having to you, but boy I hardly even got started. It’s not your fault that my insides have failed me of course, but I only wish you hadn’t left me feeling like it was so deeply mine. Because who would you turn to? When everything seems to be telling you to suck it up, keep quiet, and deal with it yourself.
Why should I have to be so apologetic for a disorder that I have to endure? If it’s too much for you to handle, too uncomfortable for you to hear, then imagine what it’s like for the 1 in 10 of the women around you that live with it every single day.
If anything I’ve written about resonates with you and you’re not quite sure what to do next, I reckon this place is a good starting point. If I can give any girls who feel something isn’t quite right inside any advice it would be to educate yourself as much as possible before going to see your doctor!
And for more endo stories… Some like mine, some completely different, some a hell of a lot worse and some a lot more positive… Then do check out this awesome platform too.