Coping with Endometriosis: Mental Health and Wellbeing

For most of my adult life, I have suffered from anxiety and depression. High levels of anxiety would affect my sleeping patterns, and my ability to eat or get things done. In the past, my on-and-off depression was so severe that it became one of the reasons I abandoned my professional career. It wasn’t until I got diagnosed with endometriosis that I saw how everything was linked. There is a connection between endometriosis and mental health A while back, researchers at Yale University carried out experiments injecting endometrial cells into mice, and after 12 weeks, these little rodents showed signs of anxiety and depression. This led researchers to conclude that endometriosis has the capacity to affect the brain, bringing upon mental health disorders.1 I spent years going from one therapist to another, failing to find effective treatment for my issues. Gynecologists were quick to mention hormonal imbalances as the root behind my bad periods, but no one talked about the impact this was having on my mental health. I believed I was losing my mind, but it turns out, my body was producing the chemicals impacting my mental health. Premenstrual Dysphoric Disorder Hormonal imbalances can seriously affect moods.2 Hormones can impact parts of the brain associated with anxiety, making us more likely to experience excessive stress and mood swings on certain days of the cycle. It can also produce a severe form of PMS called Premenstrual Dysphoric Disorder (PMDD). Roughly 5 to 8 percent of women in the UK suffer from PMDD. It involves intense PMS symptoms, from severe depression to extreme anger fits. It is very hard to manage and still, largely misunderstood and rarely diagnosed. Supporting your mental health The good news is that research like the that carried out by Yale University is deepening the understanding around endometriosis. Yet, we still need doctors to take into consideration much more than the physical symptoms. Endometriosis patients require extra support to manage the debilitating mental health side of this illness. Yet, we are not powerless. There are things we can do: Keep a symptom diary This is useful to track the connection between our cycle and our mental health. Noticing how my PMS was behind my bouts of depression, was not only comforting, but it helped me foresee bad days and organize myself to manage them better. Mindfulness and meditation Because severe PMS, anxiety, and low moods are generally temporary, it is useful to observe them as such. It takes practice, but it is very possible to learn to be with these symptoms - and avoid stressing about them - until they dissipate. Exercise and/or fresh air Exercise is the best tool I have to deal with anxiety. Even when I am at my lowest, just wearing a big hoodie over my yoga pants and going out for some fresh air will improve my mood, even slightly. Any chronic illness can impact mental health The truth is, any chronic illness has the capacity to affect our mental health. Whether it’s exhaustion from being in pain for so long, or from continuous medical visits and surgeries. Our mental health will pay a price. Recognising this is key to manage the symptoms and live a fulfilling life, despite “the endo”. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Mental health is the range of thoughts, emotions, and behaviors that affect your well-being and how you relate to others. Just like good physical health, good mental health is vital for daily functioning. Good mental health allows you to cope with the stresses of life and achieve your full potential.1 Mental health may vary from person to person and change with time. Everyone can be affected by mental health challenges such as stress, grief, and trauma. While severe challenges may require help from a professional, they often improve or pass with time.2 On the other hand, some people have diagnosable mental health conditions. These conditions are diagnosed and treated by medical professionals. They often involve serious changes in:2 Thinking, mood, or behavior Ability to engage in daily social, work, or family activities Who gets mental health conditions? Having a mental health condition is not something to be ashamed of. These conditions are common around the world. Nearly 1 in 5 adults in the United States have a mental health condition. An estimated 1 in 6 American children between the ages of 6 and 17 have a mental health condition.2,3 What causes mental health conditions? A mental health condition typically is not the result of a single event. Doctors believe genes, environment, and lifestyle interact with life events to cause a mental health condition to develop. A stressful job may be a contributing factor for some, while trauma might be for others.2,3 Not all people who have such events or situations develop a mental health condition. But if you do have a mental health condition, it is not your fault.2,3 Common mental health conditions Depression Depression may also be called major depressive disorder. Depression is more than feeling “blue” or simply sad. Depression is a serious medical condition that affects how you feel, act, and think. Symptoms vary widely and may include one or more of the following in an episode that lasts longer than 2 weeks:4 Low moods Feelings of worthlessness Hopelessness Sleep problems Generalized anxiety disorder Generalized anxiety disorder (GAD) is anxiety or worry about multiple things, most days, for at least 6 months. This fear and anxiety can cause major problems in life, including social situations, school, and work.5 Panic disorder Panic disorder is a type of anxiety disorder in which a person has panic attacks. Panic attacks are brief episodes of intense fear. These may happen right after a certain event or situation makes you feel especially stressed. Sometimes it seems to happen at random.5 The physical symptoms of a panic attack can include:5 Pounding heart Sweating Difficulty breathing Shaking Obsessive-compulsive disorder Obsessive-compulsive disorder (OCD) is a condition in which people may perform repetitive behaviors (compulsions). They also may have constant and uncontrollable thoughts or urges (obsessions).6 Eating disorders Eating disorders are serious illnesses that cause severe disturbances in eating behaviors and related thoughts and emotions. There are 3 main types:7 Anorexia nervosa: An intense desire to lose weight by avoiding or restricting food, or by compulsively exercising Bulimia nervosa: Frequent episodes of excessive eating followed by harmful efforts to avoid weight gain Binge eating disorder: Frequent episodes of losing control over eating, usually resulting in weight gain Schizophrenia spectrum and other psychotic disorders People with schizophrenia spectrum disorders and other psychotic disorders cannot distinguish between reality and their hallucinations and delusions. Hallucinations are when someone sees, hears, smells, tastes, or feels things that do not exist outside their mind. A delusion happens when a person has an unshakeable belief in something untrue.8,9 Bipolar disorder Bipolar disorder (type 1 or 2) involves an extreme fluctuation between moods. These episodes may last at least several days, with the person moving between elevated or depressed moods.10,11 The elevated moods are called mania. Mania can make a person very active and cause them to feel elated or “high.” It can also cause them to become more irritable or engage in risky behaviors.10,11 Post-traumatic stress disorder Post-traumatic stress disorder (PTSD) may develop following a shocking, scary, or dangerous event or series of events. PTSD may cause:12 Repeating thoughts of the trauma Flashbacks Nightmares Trouble performing daily tasks Severe impairment Sleep disorders Sleep and mental health are closely linked. People living with mental health conditions are more likely to have problems with the quality and amount of sleep they get. And sleep disorders like insomnia increase the risk of depression, anxiety, and problems focusing or making decisions.13 Substance use disorder Substance use disorder is dependence or addiction to specific substances, such as alcohol or drugs. It often co-occurs with other mental health conditions. Substance use disorder should be treated at the same time as any other mental health issues.14 Personality disorders People with personality disorders have emotions and behaviors that depart from social norms. Their emotions and behaviors tend to be inflexible and unable to respond to life’s demands. These disorders cause issues in relationships and other important areas of life.15,16 Chronic illness and depression Rates of depression are much higher in people with chronic illness than in the general population. The reasons for this may include:17 Problems managing daily tasks Increased financial strain Chronic pain Feeling isolated Loss of function or ability to work Stigma, when people view you in a negative way Drugs for treating illness or condition may affect your thoughts and mood Treatment for mental health conditions Many mental health conditions are treatable and far more common than you may think. Treatment depends on the mental health condition and what is best for each person. Options include:3,18 Talk therapy Medicine Learning positive coping skills Behavioral change plans Social programs Support groups Hospital admission for daily monitoring and increased care These treatments may be applied together, and there may be other options for you. Though there are no cures for mental health conditions, there are treatment options that can help you live well. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],With endometriosis, not a day goes by that I feel exhausted. Every day, I am battling a strong desire to return to the comforting space under my duvet, with my warm water bottle, and some soft jammies. Yet, that safe spot, is also the battleground for my fight battle with insomnia. And, interestingly, I am not alone. Many endometriosis patients suffer from sleep disruptions. Sometimes, it is full-blown insomnia, meaning I lie awake for hours or the entire night. Others, I struggle immensely to fall asleep. Hormonal changes are linked to sleep disruptions.1 Some night, they result in fluctuations in my body temperature which tend to make me restless. Yet, on most nights, what keeps me from getting some shut-eye is anxiety, a hormonal and emotional issue. I have tried almost everything: meditating apps, podcasts, lavender oil, even getting up and doing the laundry. Yet, the cyclical thoughts persist, feeding my anxiety. Turns out, when you have endometriosis, all of this is actually pretty normal. What is this pain? The thoughts in my brain can sometimes travel at warp speed, especially when I feel any physical change, however small. Am I getting my period? Am I ovulating? Is it my bladder, acting up again? Easily, I become the human version of Google search, and panic. It is hard to find a quiet place, when you have an illness that manifests in different symptoms, all the time. It doesn’t matter that I tell myself that it is probably nothing, or that there is little to be done unless a see a doctor. Any feeling in my body, has the ability to kick in my anxiety and, almost literally, hold my eyes open. Why am I bloated? My bloated stomach can be another cause of restlessness. Not just because it is uncomfortable, but because my mind will naturally go through every meal, analyzing each ingredient, trying to find the culprit. Sometimes there are no clear triggers that could have started the discomfort. My mind will keep me awake, while I consider what to eat the following day so my belly stops hurting. Managing sleep disruptions Because my sleep disruption is a daily thing, I have developed a few ways to manage it overtime Avoiding social media at all costs an hour before going to bed The light from any screen can overstimulate our senses without us even noticing.2 Which is why, even though I keep my phone near my bed (it’s my alarm clock, a bad habit I must shift), I leave it on “Don't Disturb” and far out of easy reach. Eating light evening meals I’ve started eating my biggest meal in the middle of the day, rather than late at night. While this can’t always be done - for example, when I socialize and dine out - it has changed my life. I now go to bed most nights without feeling bloated. If my stomach is quiet, chances are I fall asleep pretty fast. Writing down my to do list Whether it’s medical appointments, reminders to renew my medication prescription, or just boring chores I need to do, if it is written down, it's out of my brain. And I truly mean writing it down on paper, which is a great excuse if like me you’re a stationary fiend. Any electronic version of a calendar or a diary, is another reason to look at my phone, and another point for insomnia. These tips won’t work on everyone. Sometimes they don’t even work on me, especially if I am suffering from a tough endometriosis flare-up. But It helps me minimize the nights I spend wide awake, and at this point, I need all the sleep I can get. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I didn’t know it at the time, but by mid-2017, I had the perfect opportunity to evaluate the relationship between my stress levels and my endometriosis. I’d just left a stressful work environment, only to face the uncertainty of unemployment and finding a new job. Bills were piling up and my sleep schedule was suffering. Soon my physical health began suffering, too. My endo symptoms started showing up more and more often, until one day, the pain started up and just never stopped. From that point on, I was in pain every day. Later, I got to thinking that this probably wasn’t a coincidence. I’ve heard of mental health being linked to physical health, such as when stress compromises a person’s immune system and they’re more likely to pick up a cold. I wondered: Is my endometriosis somehow connected to my stress? I went looking for answers, and here’s what I found. What the science says A team of researchers set out to uncover the link between endometriosis and stress in 20111, and again in March 20182. They studied rats with endometriosis, putting half of the rats through swim stress tests and comparing the size and impact of their endometriosis lesions. [native] The rats that endured the stress tests ended up like me: with bigger endo lesions that caused more damage. In other words, the rats showed that stress does, indeed, make endometriosis worse. What stress and endometriosis have in common Scientists have a few theories as to why stress and endo are linked. For one thing, when your body is under stress, it produces a hormone called cortisol. Over time, producing too much cortisol can hurt your immune system’s ability to function – which explains why you might be more likely to catch a cold when you’re stressed out. Stress also increases inflammation in your body, and inflammation plays a huge role in endometriosis. More inflammation can ultimately mean more pain. What this means for managing endometriosis This information points to an obvious conclusion: Lowering my stress levels could help me experience less endo pain. But managing your endometriosis by limiting your stress levels is easier said than done. It’s kind of a catch-22, considering that endometriosis can actually cause stress when it comes to employment, relationships, fertility, and more. I also have an anxiety disorder and PTSD, and having a mental illness can mean carrying a constant level of stress in my body. That’s why I’ve found that, rather than trying to avoid stress altogether, it’s worthwhile for me to develop tools for dealing with stress when it comes up. Those tools can include meditation, self-expression through journaling, and a supportive community of friends. The good news? Stress management is something I can pursue on my own. I don’t necessarily have to pay for expensive treatments or enlist a healthcare professional’s help (although checking in with a doctor or therapist can be useful). But, whatever it takes, now I know for sure that tending to my feelings of stress isn’t some trivial self-indulgence. It’s a matter of caring for my health, which is just as important as any other area of my life. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] As an endometriosis patient, I’ve lost count of the number of times I’ve undressed in front of a stranger. My mind does as best it can to push aside the uncomfortable, embarrassing feelings I regularly experience. Yet, every time I need to be examined by a doctor, or someone says the dreaded words “Let's have a look at you!”, I know it’s coming. I am to be horizontal and completely vulnerable. It never gets easy. A few weeks back, I traveled into London to meet an osteopath specialized in treating endometriosis patients. He knew what I had was not a simple annoyance. He pointed at the burns on my stomach, knowing my daily hot water bottle had caused them. All of his endometriosis patients share that physical trait. He also anticipated that living with this disease, my pain thresholds were high. After the exam, I got dressed and the super-friendly osteopath gave me an appointment for the following month. He assured we were going to see each a lot. On the one hand, I felt relief. This osteopath clearly knew a lot about endometriosis and most importantly, believed every symptom I described. But even with his comforting knowledge, I am fearful of going back. Why? Because of the invasive side of this illness. Any time an endometriosis patient goes to a doctor, especially one trained in gynecology, it tends to involve an internal examination. Scans will generally be trans-vaginal. To top it all, treatment of this disease is based on surgeries that require us to go under general anesthetics, giving up all control over our bodies to someone else. Repeated medical appointments with doctors we barely know can bring on anxiety and high levels of stress. However, there are ways of dealing with these trying situations: Explore the possibility of having someone in the room with you Gynecological examinations can be quite challenging. Having someone nearby that you trust can provide a world of comfort. They could potentially be there to hold your hand throughout, or support you immediately after you've left the examination room. While having someone right next to you won't be possible every time, especially if surgery is involved, during an examination doctors, should not deny you the right of having a chaperone. If you are seeing a therapist, spend a session talking about your feelings If you have a medical appointment coming up that makes you uneasy, bring it up at your next therapy meeting. In this way, you can explore where the discomfort comes from, limiting its importance. You can also discuss coping mechanisms, such as breathing exercises, or visualizations. Always reward yourself after the appointment I have a ritual after any medical procedure that proves challenging. It may be in the form of a chai latte at my favorite cafe, or treating myself to some shoes I’ve been lusting after. It's important, and healing, to make a conscious effort to acknowledge what you've just gone through. You truly deserve to give yourself a good high-five in the form of cake, cookies, or a FaceTime session with your favorite person. Most importantly, never make apologies for being nervous or uncomfortable. Most doctors I’ve met have reacted very positively as soon as I’ve voiced my discomfort. A stressed patient is the one thing they want to avoid, and admitting you’re not OK doesn’t make you weak. Knowing what can trigger your anxiety makes you communicative, which is a great trait in a patient. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],It is difficult to explain chronic illnesses to people who don’t suffer from one themselves. People always assume there is a cure, or that your illness follows a certain pattern, a logic that will allow you to anticipate the effects. When I explain endometriosis to people and how it sometimes allows me to live a normal life, but sometimes makes me curl up in a ball of pain – seemingly out of the blue – these people find that hard to comprehend. Endometriosis symptoms can be embarrassing The “problem” with endometriosis – and explaining it to people – is that endometriosis symptoms can be embarrassing. First of all, there’s the embarrassment of talking about menstruation-related problems. Sadly, menstruation is still a bit of a taboo subject in society. We don’t really talk about it – and certainly not with our (male) colleagues. So when our period catches us unawares at our job, it’s hard to go to out boss and say, “Listen, I got my period and am in significant pain, can I go home?” Second, menstruation with endometriosis is often accompanied by heavy bleeding – often with clots! – which isn’t very pleasant to talk about (let alone experience). And so we don’t. We just suffer in silence and hope and pray our sanitary products will be strong enough to hide our embarrassment. And then there are the IBS-type symptoms, which no one likes to talk about either. Heavy cramping combined with diarrhea makes for a very unpleasant combination, so we hide it and pretend everything is okay. Endometriosis is nothing to be ashamed of I have heard quite a few people say that they are ashamed of endometriosis. It’s a disease they don’t feel comfortable talking about, mostly because of the above-mentioned embarrassing symptoms. But endometriosis is nothing to be ashamed of. You haven’t done anything wrong when you have endometriosis. And if the shame prevents you from speaking out – either to friends, family, colleagues or to your doctors – it will be so much more difficult to receive help. Speaking out decreases the embarrassment I remember the first time I told my boss about my endometriosis. I was very nervous and not entirely sure how to breach the subject. I had a male boss at the time, which made it even more awkward. But as my flare ups had an impact on my work, I needed to tell him something so he understood I wasn’t just slacking off at work. The conversation was difficult – for both of us, I think – but afterwards, I felt so much better. So much, in fact, that I resolved there and then not to be shy about my chronic illness anymore. Telling more and more people about endometriosis significantly decreased my embarrassment of the illness. And I noticed something else: my friends and family felt more comfortable asking me specific questions about endometriosis, and about how I was feeling on a particular day. Speaking out is difficult, but if we stay silent about our illness, we contribute to the taboo and shame. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],

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