Pain controls their lives, imposes limitations, and sometimes it also takes away hope. It encloses in four walls, humiliates, takes away femininity and the belief that it will be normal again someday.
- In Poland, about one million women suffer from endometriosis
- It takes years to correctly diagnose the disease, during which time women suffer in pain, often hearing that it must be so, that every woman hurts during menstruation
- Endometriosis does not have a common denominator, each woman experiences the disease differently, and each woman must undertake different types of treatment
- The National Health Fund (NFZ) finances the endometriosis removal procedure in the amount of PLN 2,5 thousand, limiting the scope of doctors’ activity; in private clinics, a comprehensive treatment costs from 15 to 20 thousand zlotys; however, there is no guarantee that the disease will not come back
“Endometriosis took away my childhood, youth, hope to become a mother”
– It hurts. It hurts so much and I don’t know where the pain comes from. I am seven years old and no one has any idea what is happening to me, how you can help me – recalls Elżbieta, who has been suffering from endometriosis for 21 years. – How was I supposed to be able to see what a menstrual period is, as a little girl? When it hurt so terribly, I lay there, didn’t go to school, just kept a hot water bottle on my stomach and begged it to stop.
When Ela got her first period at age 12, she realized that the pain she had been experiencing for years was related to her period. – I was vomiting in pain, losing consciousness in pain, it was pouring out of me like from the proverbial bucket. After 40 minutes in school, I left blood stains on my chair because the teachers wouldn’t let me go to the toilet during lessons. I had pants with me, a change of clothes, if needed, I could always change. It was humiliating.
Three years later, Ela came under the care of specialists, even then the topic of endometriosis was present, but no one specifically dealt with it. The doctor would say, “Well, that’s your charm”, “If you get pregnant, it will pass”, “Please be glad it hurts.” – One of the doctors told me that women during menstruation are dirty, so they must suffer – recalls Elżbieta.
– Endometriosis takes away the urge to live, I am 29 years old and I am a wreck of a man. I am treated for chronic depression, and I have such fears in my head that I am afraid to go to work, because what will happen if it starts to hurt? More than once I lay on the floor in my office praying that it would pass. I have been traumatized with this disease. I got pregnant at 18, but lost her right away. I can’t have children. We are after an unsuccessful in vitro test, because endometriosis not only physically destroys the body, but also directly affects the eggs. Mine is of such poor quality that the embryos cannot survive until the third day. We simply cannot afford another IVF.
Ela has back problems, is overweight, all of this is the result of a disease that she has been struggling with for years. – I weigh 140 kilograms. They say to me, “Eat more vegetables, you won’t be constipated.” I push it into myself as much as I can, and it turns out that because of endometriosis I have a growth in my intestine, which is blocked, hence the problems. I hear: “If you lose weight, nothing will hurt you” … You can see overweight, not endometriosis. It’s not a rash, a fever, some kind of physical deficit. It is a pain so strong that it cuts off your consciousness, as if someone were twisting your insides with a vise, radiating to your legs, which simply bend under you, you don’t have the strength to stand. Endometriosis robs you of your essence of femininity, because what am I worth if I can’t get pregnant? The pain and the fear of it make me bitter. I have no social life. Nobody understood why I didn’t want to go to my aunt’s name day or why I was lying in a dark room when there was a party behind the wall. They said that I was inventing it, I was exaggerating that it couldn’t hurt me that much. My friends have children, and I want to puke when I see their photos on Facebook. I look at these children and see little lampoons about me in them. Endometriosis took away my childhood, youth, hope to become a mother, stripped me of my femininity and joy of life.
“I have been suffering for so long – that I no longer remember what a life without pain is”
– I gave birth to my daughter at the age of 23 because doctors said I had to hurry if I wanted to have children at all. They diagnosed me with endometriosis two years earlier, they said that pregnancy would help me, that after years of suffering it would stop hurting. Meanwhile, what was supposed to stop her development did just the opposite, only after giving birth to endometriosis really made me hell on earth. I fainted in pain, I was unable to look after my daughter. For seven years I have heard: “It’s impossible, you make it up, please make an appointment with a psychotherapist.” For doctors, I was a hypochondriac, a drug addict, absolutely everyone was convinced that after giving birth to my baby my pains had nothing to do with endometriosis. They prescribed hormones for me without examining me, and did not perform basic tests. It turned out that the standard treatment did not help me. I had hemorrhages every two weeks, nothing helped with pain relief anymore. When I couldn’t bear any more suffering, I found myself on the operating table. The doctor grabbed his head, endometriosis had made a good place in me, and he didn’t know how it could have happened …
Ania is 32 years old, she started being interested in endometriosis, reading and looking for help for herself. Since the hormones weren’t helping her, she was left without treatment. – I decided to try alternative methods, which was not understood by the doctors. They don’t know it, they don’t recommend it, but they laugh at it, they snort. I heard that I am being frivolous if I believe that I will help myself this way. Did I have any choice? Ania came across a doctor from a German clinic dealing with endometriosis. He initially confirmed her assumptions – pregnancy and hormones caused the disease to develop. – I felt that by listening to myself, my body and intuition, I was going the right way. All I want is not to give in to this disease. I know that I have to fight for myself, but in Poland it is impossible. The National Health Fund allocates 2,5 thousand for endometriosis surgery. zloty. Meanwhile, when we women with endometriosis end up on the table, no one knows where it has taken root. They open us, grab our heads, because it turns out that we have endometriosis on the bladder, intestines, adhesions, adhesions of the ovaries to the abdomen, and the fused peritoneum with the intestines. During such operations there should be several specialist surgeons. But they are not there, because the funds allocated by the National Health Fund are too low. As a result, the cost of the operation in a private clinic, where all lesions are removed, is between PLN 15 and PLN 20.
Ania collects money for an operation in Dortmund, a doctor who confirmed her fears, did not laugh, but listened and understood that what she was talking about was not a woman’s whim. The operation was scheduled for December 10. – I can’t wait any longer. I have a lump in my bladder that pierces the last layer of the inner bladder wall. It is only a matter of time before endometriosis will eat this wall and it will start to get more pain and hematuria. I have been suffering for so long – that I no longer remember what a life without pain is …
“Pain still makes me fear and shame”
20 years ago, no one heard about endometriosis. When Ewa was discharged from the hospital after the first operation, she had “stomach ache” written on the discharge. – I was in such a state that they sprayed me with morphine, because I howled like an animal in pain. Imagine if you are in pain and the doctor has no idea why, neither this doctor, nor the next one, nor the next one. And you, all you know is that something is wrong with your body. You are helpless, you have no knowledge, you have no power. It is paralyzing, disruptive.
Ewa recalls: – I paid for my endometriosis with depression. I have been living in pain since I was 14. For 20 years I didn’t know what was happening to me. I suffered a lot. I became a drug addict because what could I do, how to help myself, especially since I had to go to school and take exams. After three operations that I had in the meantime, I felt even worse. But when your illness gives you such an impact that you don’t do it, you finally take action, stop relying on doctors, and take responsibility for how you feel. It cannot be otherwise. If you suffer so badly that you want to die, and everyone around you tells you that you have something with your head, that you make up that your period must hurt, you freak out, you break down. It was like that with me. I could fall into this abyss, be plunged or fought. Endometriosis is a massacre, but I have transformed it into some kind of strength, I know that not everyone succeeds in it, especially when there is no support from loved ones.
Ewa reached for English-language publications on endometriosis. On their basis, she developed a diet that began to make her feel better. – It was like an epiphany. Today I know girls who do food intolerance tests, eliminate what they feel from their diet, then they feel worse, then the pain increases, and it works. However, it must be remembered that it does not help us to do the same, that each of us is different, like this disease. I still have such a situation that one day I wake up in such a bad condition that I have to put all my plans out of my head because I am not able to move either my hand or my leg. I have no control over it, but I don’t wind up in pain all the time like it used to be.
Ewa emphasizes that living with endometriosis is not normal. – Fortunately, I never had the urge to become a mother, so this aspect of the disease, which is the greatest drama for many women, missed me. All I need to do is control the pain so that I can get up, go to work, that I don’t get hurt on the way, that I don’t fall over in the street or in the office. I know what to do and what not to do. I am aware that eating a donut will be disastrous for you. I can’t donut, and another woman is twisting a piece of yellow cheese in pain. A woman with endometriosis who has never experienced such severe pain can sit next to me, and on the other hand, another woman can lie on the floor, because only this brings her pain relief. We all have some generalities in common, nothing more, because what helps me doesn’t have to help someone else to relieve my pain. It is important to listen to yourself a little, learn to live with this disease with dignity, although this pain humiliates us so much, which is why we are ashamed and hide it. I myself sometimes sit on a bench, at a stop on the way home, when the pain becomes unbearable. Every time I pretend to check something on my phone, that I am reading. Even though I am 45, the pain still causes me fear and shame. It probably never ends.
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