#but. looks like it fucking does. endo can cause chronic fatigue. fuck

[theygender]

I've been trying to figure out and justify why I've been experiencing so much fatigue lately. At first I thought I may have developed anemia from my endometriosis making me bleed for 8 weeks straight but my blood tests came back fine. Maybe I'm just exhausted bc I had to work that entire time while actively sick? But I had quite a few days off to rest this month and I haven't been as sick recently, so what gives? Turns out I didn't need to look for an outside source. Apparently fatigue is one of THE most common symptoms of endo and it's just not mentioned often bc most doctors underestimate the impact fatigue can have on people's lives 🙃 The call is coming from inside the fucking house

[hollywayblog]

One in Ten: Living With Endometriosis

At eighteen, Rhiannon should have been bright-eyed and beginning her adult life. Instead, she was bed-ridden, depressed and pumped full of hardcore painkillers to manage her severe and mysterious chronic pain, which affected her legs, pelvis, abdomen and back. She’d always had painful, heavy and sporadic periods, but now she was never not in agony. It wasn’t until she underwent an invasive laparoscopic surgery to have an ovarian cyst removed that she discovered the reason: Rhiannon – like one in ten women – suffers from endometriosis.

Endo-meat-tree-what-us? Endometriosis. Despite the fact you probably know someone who has it, I’m guessing you have no idea what it is. Well, endometriosis is a condition in which tissue similar to that which lines the uterus grows elsewhere in the body. This invisible illness – which can be life-altering and debilitating even when managed properly – has neither a known cause nor a known cure. And despite being as common as asthma or diabetes, those who suffer with endometriosis – almost exclusively women – fail to get the treatment they need.

Though the reasons for this are complex and plentiful, the most crucial component of any issue is awareness – you can’t fix a problem if you don’t know it exists. That’s why I decided to sit down and have a chat about the realities of living with endo with my sister Rhiannon, who has not only endured the illness for fourteen years, but managed to thrive in spite of it.

That wasn’t always the case.

Rhiannon’s first sign that something was wrong was a period that came every two weeks instead of four, and was brutally heavy and exhausting. She went to the doctor and was assured that this was normal (hint: it’s not) and she would just have to get used to it. Over the years, her period became more than frequent and irregular. It became debilitating, forcing her to spend entire school days in the sickbay with nothing but ineffective Panadol to quell the hot, raking pain.

This, too – she was told – was normal. (It’s still not.)

But by seventeen, the pain was no longer contained to the days in which she was bleeding. She went to the doctor again and finally she was granted some tests, which eventually led to her diagnosis – eight years after that first symptom.

Eight years sounds like a long time, and it is. Yet the average is actually TEN years. How does that even happen?

When you live in your body every day, it doesn’t take a genius to know when something’s not right, but Rhiannon has had her pain dismissed by doctors in a million different ways. She was told it was normal, it was all in her head, the pain would go away if she just lost some weight. She was labelled as a hypochondriac instead of receiving the help she needed. This, sadly, is not the exception but the rule when it comes to the diagnosis process for endo and many other women-specific maladies.

The fact is, doctors are not sufficiently educated about this illness or how to diagnose anything more mysterious than a head cold. They are trained to write prescriptions, not to solve puzzles. If your problem can’t be fixed with a pill they just don’t know what else to do with you, and so it’s easier to simply write you off as hysterical.

And girls are so used to feeling shitty we don’t demand better. It’s drilled into us from pre-puberty that everything is gonna hurt. You’re gonna bleed from your vag, then you’re gonna push a human out of it, then you’re gonna go insane for a year or so while your eggs dry up. Also, you’re gonna be paid less than a man for no reason and have your heart broken a couple dozen times. Womanhood is pain.

That’s the story, and it’s what gets us accepting burdens we don’t have to carry. This means getting women to recognise that their symptoms are actually symptoms and need to be diagnosed is hard enough, getting a doctor who’ll take you seriously is harder, and if you can get that far, actually getting diagnosed is, in itself, not easy.

It can only be truly detected through laparoscopic surgery. If you go through the public system you’ll go on a lengthy waiting list. If they do find endo – and not finding it doesn’t mean it’s not there – they will remove it at the same time. This may provide some relief, but it’s not a cure by any means.

After Rhiannon’s first surgery, she was told that they had found and removed endometriosis. That was all the explanation she got. No one told her that it would most likely return – she thought she was cured, and was treated to a few blissful months of feeling healthy for the first time in almost a decade.

You can imagine how harrowing it was when the pain returned. She ended up not only in her GP’s office but also in the emergency room, having experienced pain attacks so intense she didn’t know what else to do but call an ambulance. No matter where she went, no one knew what to do with her. She was told by medical professionals that endometriosis could not be causing this reaction because she had already had every inch of it removed in surgery (blatant misinformation). It didn’t seem to matter that all her symptoms – chronic pain, vaginismus, irregular periods (where the pain was even worse), painful bowel movements, nausea and more – were strongly associated with endo, and that there was no reason whatsoever that it could not have returned. The widespread ignorance and misinformation about her illness caused her several more years of tears, stress and yet more pain.

Finally, after ongoing doctors’ appointments and doing extensive research of her own, Rhiannon came to terms with the fact that she did, in fact, have endometriosis – a chronic illness that she would live with indefinitely. She had always thought that she was pursuing a diagnosis so that she could be fixed. She couldn’t have anticipated that the diagnosis would be the worst part – that the life she had envisioned for herself was no longer an attainable reality.

Chronic pain and fatigue meant any conventional job was out of the question. This brought on a feeling of hopelessness and uselessness that came not only from inside herself, but from others who couldn’t reconcile the image of an externally fine young woman with a person in crippling pain. Much like mental illness, it’s not easy to drill into people that just because you look one way on the outside, it doesn’t mean you’re healthy. Even people who understand in theory struggle to support in practice, becoming frustrated when you dare to actually show symptoms. The fact is that a person who suffers from an illness cannot be reliable in the same way a healthy person can, but it’s hard for humans to conjure sympathy when the visual triggers aren’t there. If you trip over and get a head wound your friend will understand why you can’t come to lunch – they’ll probably even ask you if you need anything. Invisible illnesses are trickier, and can cause a lot of internal shame, guilt and social anxiety.

The depth of this subject can make your head spin. It encompasses so many issues – feminism, mental health, invisible illness, the medical industry. Sex and addiction come into it, and so does compassion and empathy. My biggest takeaway, though, is the strength of women, and I witness this in my sister every single day.

From being bed-bound, to a close call with prescription painkiller addiction, to finally rediscovering her real passions and pursuing them wholeheartedly, Rhiannon is a shining example of the power of a positive mindset. It’s about, she says, focusing on what you CAN do – acknowledging your limitations without creating ones that don’t exist, and realising that happiness is a choice you make and not something that just happens.

Rhiannon has written stories since she was a kid, but decided like so many of us to pursue the more conventional career path. She was heartbroken when she realised that she wouldn’t be able to work as a midwife – but a few years later she had an epiphany: although she had an interest in nursing, it had never been her true passion. Now, Rhiannon is a full-time writer. And really, she was always supposed to be one. Some days she still can’t do much more than curl up in bed with a hot water bottle, but she is making her own rules, chasing her dreams however she can. And that is so fucking powerful.

 Special thanks to Rhiannon Fontana for sitting down with me to talk about this. Please check out https://www.endometriosisaustralia.org/ for more information, mark March down in your calendar as Endometriosis Awareness Month and share the love! Share this article, make a donation or just reach out to an endo warrior and let her know you’re there.

You can also support Rhiannon by purchasing her novel, Oblivion, here.