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Endometriosis – Quality of Life and Psychosocial Distress

Guest Blog Post by Mandy Klumpkens

When our brain is tired of coping with too many things at once, psychological distress often comes with feelings of vulnerability and fear that eventually can become disabling. Symptoms that are linked to this mechanism are depression, anxiety, extensive worrying or social isolation. However, these symptoms are most likely being interpreted in the wrong way. Many times it is simply linked to being unable to cope in an efficient way. This, instead of linking it to ongoing biological and physiological changes due to endometriosis throughout a woman’s life. And actually seeing it as a result of hormonal imbalance, that has been overlooked or has not been treated the way it should. 

From an early age young girls with endometriosis are being subjected to hormonal imbalance while their brain is trying to mature and manage all that comes with being a teen. Often prescription drugs are being taken systematically to take the edge of the killer cramps. The combination of hormonal imbalance and drug intake result in creating unhealthy neural networks. These kinds of neural networks result in unhealthy and inefficient coping skills that are hard to change later in life. This is why it is so important that the moment a woman is being diagnosed with endometriosis needs to take place early in life. So the neurological impact of this disease can be limited as much as possible. 

Endometriosis is as we know a whole body disease. It literally has an effect on every body part as well as a woman’s quality of life. This is exactly why (pain) education is so important. You need to know your game. You need to know what is caused by hormonal imbalance, how thresholds work and what type of medication or alternative treatment works for you. Because it is a whole body disease, often more than one doctor is involved. Simply taking medication won’t do the trick. It will numb the pain for a while but it definitely should not be seen as treatment when one doesn’t take the cause into account. Treating endometriosis, the ongoing hormonal imbalance should not be underestimated or be ignored. As a result, the formation of unhealthy neural networks need to be challenged and treated, to optimize the quality of a woman’s mental state and life. 

That all of the above does not make you feel like a happy camper makes sense. Dealing with an unpredictable health state and not seeming to have any control over or influence on your body results also in chronic stress. Whereas people who do not have to deal with this go back in a relaxed state after a stressful event, people dealing with stress on a daily basis do not. In general, stressful events will activate a survival mechanism by initiating different hormonal changes which are added to the already ongoing hormonal imbalance due to endometriosis and psychological responses. This is called the fight or flight mechanism. 

The part of the brain that processes our emotions is the amygdala. When images and sounds that enter this part of the brain will be interpreted as danger, a signal will be sent to the hypothalamus and also the pituitary gland will be activated. The hypothalamus can be seen as a command center that will activate the whole body to fight the danger. The sympathetic nervous system (SNS) is activated. The adrenal glands will be activated which results in higher levels of cortisol in the bloodstream. This for example will make the heart beat faster and causes pupil dilation, extra oxygen will be available for the lungs and all senses will be heightened. 

As the SNS is responsible for the fight or flight response, the parasympathetic nervous system (PNS) controls homeostasis and is in charge of the body’s rest and digest function. This relaxation response usually kicks in when danger is over. However, this state of relaxation can not be reached when a person is dealing with chronic stress. For example, when a woman is dealing with a chronic illness on a daily basis for years. As a matter of fact the relaxation response simply doesn’t have time to kick in before the next stressor hits. 

This mechanism also has a crucial influence on pain levels after surgery. Surgery on its own, does not simply cause pain levels to go down just that easy. Cortisol levels are still high and no relaxation state has been reached yet. The ongoing fight or flight mode is still there. Because neurological and psychological factors are not treated and changed. To fight exhaustion medication, uppers, or cafeïne will be used to compensate. Because this intake needs to be upgraded again and again to meet the ongoing rise of this threshold, a single visit to Starbucks or 1 prescription drug won’t be enough soon to fight off the exhaustion. Which will lead to depression because energy levels are down the drain. 

Research shows the importance of taking psychosocial factors and ongoing stressors into account. This because by improving the quality of life from this angle will benefit further treatment of endometriosis. In fact, it is just as important as choosing the right type of surgery or the most effective medication. Because it is a whole body disease with different stages, and everybody is different, treatment is different for everybody and needs to be custom made. To fight off stress and regain this relaxation state, social support and any form of physical activity are proven to be effective. Basically, a treatment plan needs to be life changing. Every aspect needs to be checked and needs to be taken care of. Only then will this disease be treated effectively. Endometriosis will be removed with the right type of surgery. Pain levels will be monitored and treated in a healthy way, after the hormonal imbalance is reduced as much as possible to create healthy neural networks and coping strategies.