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Managing Your Quality of Life With Endometriosis: The Greatest Journey you Will Ever Be on

Managing the quality of your life
Managing the quality of your life

When endometriosis enters your life, things change. Big time. There will be good changes and bad changes you will have to learn to deal with. What makes it possible to stay positive and see things in perspective is related to your coping techniques. Although at times it seems we are constantly living on the edge and sometimes just cross that border and live on the wild side, our positive attitude keeps us strong. This is what defines your quality of life with endometriosis.

Telling others about endometriosis

To tell others about endometriosis or how you are really doing is not always the easiest thing in the world, even though you deal with it every day. It gets easier in time, though. You learn what to say and what is best to leave out and keep to yourself.

Sometimes you seem to have the tendency to surprise yourself by pulling this off with humor. Leading up to that moment, many obstacles have been conquered. There have been times to inhale, exhale, or just scream it all out. Because being chronically ill is like stepping on a rollercoaster without a speed limit. It takes time, tears, frustration, and many doctors to turn that rollercoaster into a ride where you can set the speed limit. When you come to this point in life, your coping strategies are becoming more and more defined. 

Seeing things in perspective

After being diagnosed, it takes a while before you can see things in perspective. It takes time to accept (to a certain level) the impact endometriosis has on your life. Research shows that psychosocial factors (like catastrophization) may identify patients who are less likely to benefit from surgery. Outcomes like these show us that it is extremely important to take psychological factors into account. Endometriosis is not a disease that can be effectively treated by only painkillers or hormones. Laparoscopic excision surgery, in combination with psychological intervention, is the best approach.

Research has also shown that when you train yourself to approach situations with a positive attitude, some improvement in aspects of your physical and psychological wellbeing can be obtained. This is because you train yourself to use cognitive-behavioral techniques more efficiently. Also, try to surround yourself with people who lift you up and are willing to deal with your condition, people who do not judge you or hold your disease against you. Finally, research has shown that emotional support through support groups or social media is able to increase positive emotions and a positive attitude.

Getting psychological support

To hear your diagnosis is overwhelming. Many emotions will wash over you. It feels like walking around in a maze where you can’t seem to find honest answers about the disease itself, medication, hormones, and infertility or operation techniques. All this takes its toll on your psyche due to the immense impact endometriosis has on all aspects of life. It makes sense. It does not mean you are fragile or that you fail. Like Dr. Seckin, I believe it will truly be beneficial to see a psychologist as well.

A multidisciplinary approach will enable you to maximize the quality of your life. Endometriosis is complex. Do not only treat the physical aspects of the disease. Do not treat this disease with antidepressants, hormones, or painkillers. These drugs will not treat endometriosis and will not optimize the quality of your life.

A good doctor will acknowledge the fact that endometriosis does not only affect physical but also psychological aspects. You cannot control endometriosis, but you can embrace a multidisciplinary approach to this disease and work on coping strategies that will maximize the quality of your life.

Life is not about waiting for the storm to pass. It is about learning to dance in the rain. We are able to do this because we are fighters and won’t back down. 

Mandy Smeets-Klumpkens
Psychologist
Ambassador Dutch Endometriosis Foundation

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