General Ramblings

Hiding Secret Pain: Endometriosis Awareness Month

A friend on Twitter told me that this month is endometriosis awareness month, in the midst of my complaints about one of my pain flares. And I struggle to write this in a way that will make sense and be helpful, but also not be cliche. Because endometriosis affects one in ten people and no two people have similar experiences.

I actually know six people with endometriosis, a few being close friends or family members of mine. I suspect that my ancestors must have had it, because it can have genetic ties, like most reproductive conditions. But our society is such that women complaining about pain fades into the noise of everything else. Chronic pain, and chronic illness, is just our cross to bear.

So though I started my period at 12 and ended up having pain so bad I’d pass out, or feel nauseated, or need to sit in the bathroom all day because my bowels were working overtime, I didn’t think to ask others about their experiences. Because my female family members had cramps and pain and it was just the way our family was, though I know that some of the women in my family never experienced anything like I did.

Image credit: WebMD

It’s our secret pain, the people I know that experience this. It’s the stabbing and the sudden cramping, the hours we sit trying to breathe through pain that wraps like a vise around our backs and causes sweat to break out on our brows. Or the days I laid in bed, praying for the latest in several painkillers to kick in. Did you know that often pain caused by endometriosis won’t respond to simple painkillers? Some people are prescribed narcotics, or heavy anti-inflammatories that might hurt their stomachs or give them other side effects. I haven’t ever been prescribed these things, but I have used old tooth infection painkillers like Tramadol to get rid of the pain that’s like a crashing wave. I have put up with nausea, constipation, and gastritis to get rid of the pain that blocks out anything else.

Endometriosis is a reproductive condition that affects the uterus. Essentially, it’s the endometrial lining, or the inner lining of your uterus, growing outside of the confines of the space. It’s, as I sometimes wryly joke, an “out-of-the-box” creative disease, that finds little nooks and crannies in your body to make its mark. It can deposit onto your bladder, ovaries, or bowels. It can even be found on parts of your digestive system or your lungs. And because it’s hormonally activated, it acts like your period. Some people have no symptoms. Some have many awful symptoms that I’ve never experienced. But typically, if you are already prone to bad periods, you are going to be prone to endometriosis pain. And for awhile, you’ll probably just chalk it up to another terrible cycle.

Then it gets worse.

Endometriosis is a progressive disease. Unlike normal reproductive cycles, it doesn’t always get better the older you get. For me, my symptoms got worse after I turned thirty and my hormones, always out of whack, changed. Instead of pain around my mid-cycle ovulation and my period week, I ended up with pain after my period, the week of ovulation, and the week before and during my period. If you’re keeping count, that’s 3-4 weeks out of every month that I can expect pain, nausea, bowel symptoms, mood swings, and exhaustion. It’s like a 24/7 PMS party, except that now the pain gets so bad that I can’t actually live my life the way I want to.

You can treat endometriosis, once you get what’s called a clinical diagnosis, or a doctor telling that’s what they think it is. You can treat it, once you break through the many doctors who’d like to tell you that it’s due to your weight, or your genetics, or the fact that many people have reproductive pain and that’s that. I went through ten years of this sort of bullshit, though I’ve probably had the condition since I was a teenager. I get ovarian cysts as an added bonus to my general hell, so often I was misdiagnosed or placed on hormonal birth control as a way to control my hormones being so very out of whack. I was told to change my diet, to lose weight, to get more exercise.

The issue with all of that is that the nausea actually makes it so that you don’t want to eat anything, anyway, except for toast and crackers and ginger tea. So I’d lose weight and expect that my pain would get better, when it’d get worse, because I wasn’t eating properly and had fewer reserves to deal with it. And sometimes everything goes through you, anyway, so you’re not really keeping any nutrients inside your body. That means I had no stamina to exercise. I used to go for hour-long walks daily. Due to the fact that my particular disease affects my back and hips, walking is actually painful for me many days out of the month.

I don’t doubt that exercise and diet helps endometriosis. I mean, it helps other diseases and it’s true that you feel better when you’re living a more active lifestyle with a diet that works for your body. The issue is, you can’t always stick to this sort of prescription when your body is pretty much fighting against you all the time. So the good intentions trail away, and the pain gets worse, and you blame yourself. At least, I did.

The mainline treatment for a clinical diagnosis of endometriosis is hormones, through birth control pills or injections. Some people get an intrauterine device like a Mirena inserted to control their hormonal swings. If this doesn’t work, which many times it doesn’t due to endo’s progressive nature, then it becomes a surgical case where the lesions and deposits are removed by cauterization or cutting them out. In bad cases, when none of this has done anything for the disease, the only way to stop endometriosis is going into menopause or removal of your reproductive organs altogether.

Since endometriosis actually can’t be truly diagnosed outside of surgery, sometimes birth control and IUDS are band-aid solutions that bring a lot of unwanted side effects along with the pain. I had terrible headaches and nausea on birth control. Now, my other chronic conditions eliminate it as a possibility for treatment, and so surgery is one of the only options I have to treat my disease.

I’m pleased to say that my current gynecological team is one that listens to me and takes into account my particular situation and body. But again, this is ten years in the making, dealing with many doctors who curled their lips at me, as if another woman talking about her reproductive pain was so annoying to them that it was easier to scribble another prescription for birth control and shove it at me so I’d simply go away. I’ve been told that weight loss is the solution to reproductive issues, completely ignoring the fact that people, fat or thin, one in 10 people, get endometriosis and it has not a bloody thing to do with their weight or their lifestyle.

Endometriosis, if left untreated, can cause infertility and increase your risks for certain kinds of cancer. My current gynecologist will do anything she can so that I will be able to have children one day, if I want to, but it’s a small window and people who have children with an endometriosis diagnosis usually do so early in the disease’s life cycle, in their early to mid-20s. By the time you’re in your thirties, the scarring and the damage done by the disease is usually fairly significant. I’ve been told my ovaries and Fallopian tubes are scarred, probably from the years of cysts that could have been endo and could have been my hormones.

Image credit: physio-pedia

It shouldn’t be this hard to fight to be listened to, but it’s actually proven that doctors do tend to take women’s pain less seriously than men’s. It’s also true that the myth of period pain, of grinning and bearing it and accepting that it’s our lot to suffer, whether it was from some myth about a woman and an apple or just that’s the way our bodies are, causes many people not to seek treatment for debilitating pain. Eventually, though, it does interfere with your life. It can interfere with sex and with everyday activities. As I say, there’s a lot that I recently have not been able to do. I ended up having to leave a Sunday brunch and walk with my best friend due to a pain flare. And then, there are other days when I don’t think I have the disease at all, because I feel absolutely fine.

But I don’t know. I don’t know when it will hit or when it will stay away. I’ve had periods where I had no cramping, no bowel issues. And then I have three in a row where the nausea is so bad that I can’t eat and I pop ginger pills all day, or the pain is so bad that I am hunched over the toilet, or I pass out. I had to get stitches last summer due to a pain flare that had me fainting in my hallway, smashing my mouth and teeth into the hardwood floor.

A lot of my life with endometriosis pain flares.
A lot of my life with endometriosis pain flares.

So, when we talk about endometriosis awareness, it’s not just about the disease. It’s about the many people who suffer this daily, and can’t tell anyone. Jobs aren’t always understanding of chronic illness, and they certainly don’t enjoy when you need to take too much time off for appointments that might lead to nothing. And no one wants to hear about pain – they might tell you that everyone sometimes gets cramps, when it’s so much more than just cramps. Or they may say you’re not trying hard enough, you need to push through it, or you get lost in your own head and depression about your life and your pain.

There’s a lack of understanding about most chronic illness, but I feel it’s even more pronounced when it comes to reproductive pain. If you don’t identify as female, it can be even worse. Transmen and non-binary people may feel unheard by doctors and by people in their lives. It’s as stigmatized as mental illness, and as someone who suffers both, I can say that they’re very comparable in their ability to make you withdraw into your own head and isolate yourself.

I never asked for this pain. No person does. And no person wants to be told that it’s normal to feel like you’re constantly fighting with your body just to do everyday tasks. For now, I take each day as it comes. I am on the waiting list for laparoscopic surgery to finally diagnose my endometriosis once and for all. I am on several different medications for the bowel symptoms, and my friends and family are aware that sometimes, I just can’t do everything they can. I am trying to be healthier in the way I eat and how much I’m able to exercise.

So, I’m asking you to be aware. Be aware that we fight to be heard. We fight to break through the old “hysteria” that the medical profession as a whole perpetuates about female pain and reproductive conditions. And when we are heard, it’s like a little victory, every time.

It’s not just period pain. It’s a chronic illness. And I am one of thousands of people who live with it.

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