Endometriosis is a disease that has come to affect 1 in 10 women worldwide. Very sadly is that until you get to have this diagnosis correctly made, you will go through quite a long and traumatic journey.
Adela’s story, endometriosis warrior and psychologist:
I had to deal with this delay of diagnosis, because 21 years ago, when I was just 15 years old, I was partially diagnosed or told as an opinion that I might have endometriosis. At that time there was so little information about this disease that there were very few doctors who knew how to recognize it or how to approach it.
Since then there have been 4 surgeries, opinions, tests, misinformation, treatments of all kinds, years of taking birth control pills without a break, money out of pocket because the health care system in our country does not recognize this disease as a chronic one and is not reimbursed at all and all for nothing.
Only the 5th operation has brought me a normal life and this is only because medicine in this field has started to evolve and because we now have doctors specialized in endometriosis in Romania who know what they really have to do.
But unfortunately this disease comes with several problems. One of the big challenges that come once you find out you have endometriosis is the significant psychological impact because of the physical suffering.
Endometriosis brings a significant psychological impact because of the physical suffering and chronic pelvic pain
The pain that is always present can’t make us feel good, when something hurts you can’t be a normal person, the suffering doesn’t let you be your true self, you can’t smile, you can’t be a happy person, and the peace and relaxation of your body is long forgotten.
In the case of this disease the psychological impact is major because endometriosis is a very complex condition that has a strong echo in the life of the woman who has discovered that she suffers from this disease. We can speak firstly of chronic pelvic pain and secondly of the discovery of infertility which affects enormously, both physically and psychologically.
Unfortunately many of us find out that we suffer from endometriosis. You have been trying for some time to have a baby naturally and all your life you have had pain during your period and not only, but you have been told that it is normal, you go to the doctor and find out that the pain you have been struggling with all your life is caused by endometriosis and on top of that, you cannot have children naturally or at all. How do you feel? The impact is devastating!
Emotional and psychological trauma
The psychological impact of endometriosis is so great for many of us that we suffer from anxiety and unfortunately all these feelings turn into depression of varying form and intensity. And how can this not happen when you are in constant physical pain, how can you be in a good mood when you are dealing daily with pain, tiredness and simply drained of strength, because we all know that pain consumes a lot of our resources.
The pain in endometriosis for many of us is constant, it can be different in intensity before, during or after the period, but it is there with us always. This is where the different forms of depression that we begin to experience come from. We become apathetic, melancholic, the desire for isolation arises and you retreat into your nest and don’t want to talk to anyone. Not to mention that cyclical pain that repeats itself and causes anxiety, it doesn’t go away and you don’t understand why, whatever painkillers you take it comes back quickly or doesn’t go away at all. The body starts to somatise everything and other states appear such as restlessness and worry, insomnia, restless sleep, headaches, nausea, low appetite and the famous “brain fog”.
What is brain fog?
Quite simply, just as the name says, if you have a brain fog, you can no longer concentrate, you are no longer able to think clearly and all because of our brain’s mechanism to adapt to pain. What exactly does it do? It goes into a process of denial, of hiding the pain, but along with that, through this protective mechanism, it robs us of that alertness and the ability to be a cerebral person and to think clearly.
All this ends up taking us into a very dangerous area and if we don’t realize that or if those around us don’t see that, unfortunately things will get much worse. This is where we need, in addition to the team of doctors who help us fight endometriosis, a psychologist/therapist who will talk to us, listen to us and teach us how to manage the chronic pelvic pain episodes and the anxiety and depression we have.
The impact of endometriosis on work, family and social participation
As I said above, because of the pain, we want to isolate ourselves. This is where a new challenge of the disease comes in and that is the role of the woman with endometriosis in society, how does the disease interact with the role of mother, wife, co-worker or employee?
Unfortunately not very well, even though many of us make superhuman efforts to keep ourselves afloat.
Why do I say that? Primarily because we end up feeling misunderstood or feel too little empathy from others, or too much. Depending on our character, some of us feel far too pitied and victimized and don’t want to be seen differently.
Secondly, because of grief we don’t perform well at work or we miss too much work and sometimes end up getting fired from work because of it.
And thirdly, family life, couple life and – for those of us who have managed to become mothers – mother’s life, is again subject to great challenges, because at home I think there are the highest expectations of a woman and her role is starting not to be as well done as it used to be.
The psychological impact of infertility caused by endometriosis
I talked above about the trauma of infertility and I decided to leave it at the end because it is an extremely sensitive subject both psychologically and in terms of couple life and social life.
Infertility is a great tragedy in a woman’s life, especially if she very much wants to have a child of her own.
There are also fortunate cases when the condition is diagnosed correctly and early and the age is optimal, and then we have an extra chance. But unfortunately there are many unfortunate situations when this is not so easy or possible at all and then we face a real drama in our life.
Here, in order to be able to overcome and manage this unfortunate situation more easily, we need first of all the support of our family, of our partner, but also favorable economic conditions in order to be able to carry out the necessary procedures for obtaining a long-desired pregnancy.
Unfortunately endometriosis does a lot of damage on many levels, but with the help of a multidisciplinary team and a psychologist, the road can be smoother and the trauma easier to manage and overcome.
Take home message: You are not alone in this fight with endometriosis.
You can send me a message if you want to share your story: click firstname.lastname@example.org.