- I vomited and passed out from the pain
- Diagnosis? You have to wait 8 years
- Difficult diagnosis of endometriosis
- I lost control of my own life
- Tame the disease
- Increase awareness
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Kasia, who is only 30 years old, already dreams of menopause. Why? Because he has endometriosis. He hopes that thanks to the menopause, he will free himself from pain, uncertainty, all the troubles and ailments resulting from the disease. Because endometriosis not only makes everyday life difficult and threatens fertility - it also makes patients feel they lose control over their own lives.
This disease can literally take away your will to live. The symptoms of endometriosis can be so distressing that some women are sure they are dealing with cancer. Two years ago, during a routine checkup at a gynecologist, Katarzyna found out that she had a cyst on her ovary. The examination took place in the second half of the cycle, so the doctor reassured her that it was not too bad. "We'll be watching," he said. Busy with everyday matters, Katarzyna forgot to recognize her.
I vomited and passed out from the pain
- After a few months during my period, I had terrible pain - she recalls. - I vomited and passed out, I had a fit, cold sweat was pouring out on me. I swallowed painkillers but they did not bring any relief. With the next menstruation, the nightmare repeated itself. Then I remembered the cyst. I went to the doctor and I heard again that it was a cyst that might be absorbed or rupture and it would be over. Zero details. And this pain? she asked. - Menstruation hurts, it's normal - she heard.
Kasia was not satisfied with this answer. She felt something was wrong. She went to another gynecologist. This time she was more fortunate. She came to a doctor who ordered detailed tests, including the determination of the CA 125 marker, the increased level of which may indicate endometriosis or ovarian cancer. The marker was increased twice.
- Full of the worst fears, I immediately went to the gynecologist-oncologist - she says. - Based on the symptoms, the ultrasound image and the marker level, the doctor ruled out a neoplasm. - You have endometriosis. The cyst needs to be removed, he said calmly. - I was referred to the hospital. It seemed to me then that everything would end well. One more moment and I'll be free from this nightmare.
It happened otherwise. Kasia did not make it to the scheduled date of the operation. She was hospitalized with a "sharp belly", right on the operating table. During the operation, a cyst with a diameter of 8 cm (the one thatit was supposed to absorb itself!). It also turned out that there are many more endometrial changes. Some were so situated that it was impossible to remove them. Doctors decided that in this case the disease was already in stage III on a four-point scale. When Katarzyna was leaving the hospital, she heard that she was to report to the attending physician, and she should get pregnant anyway.
Diagnosis? You have to wait 8 years
Kasia, as some doctors call it, is a difficult patient. She does not tolerate any treatment. Hormonal drugs are eliminated due to the coexistence of other diseases that exclude such therapy. Painkillers do not help. Endometriosis is progressing. Soon she will have to undergo another surgery to remove new lesions.
Kasia has contact with many sick women and knows that pregnancy is rarely a cure for endometriosis. "I can't help but get the impression that the doctors who encourage us to this form of" treatment "just don't know what to propose," he says bitterly. - Nobody wants to delve into the problems that plague us. A patient with endometriosis is an unattractive and ungrateful patient. There will be no therapeutic success because endometriosis cannot be cured. The tired woman is dissatisfied and expects help, which the doctor cannot provide. Lack of improvement causes patients to abandon treatment, and doctors treat it as a necessary evil.
Difficult diagnosis of endometriosis
A quick diagnosis Kasia owes a lot of luck, but also her own determination in looking for the cause of her pain. Thanks to this, after a few months she knew what was wrong with her. Not all sick women are so lucky. The average time to diagnose endometriosis is - a trifle - 8 years (and this is world data, not Polish).
The matter is easier when - just like with Kasia - a cyst appears on the ovary. It is worse when the foci are scattered throughout the body and cannot be seen on ultrasound. Symptoms of endometriosis may vary, and their occurrence and severity do not depend on the severity of the disease or the size of the lesions.
The most common symptoms of endometriosis are chronic pelvic pain and painful periods. There may also appear: diarrhea, constipation, low back pain, fatigue, discomfort when urinating, defecation, pain during or after intercourse, sometimes fever, vomiting.
Women go from specialist to specialist and no one can make a diagnosis. Research, suffering and uncertainty multiply.
I lost control of my own life
Despite many adversities, Kasia tries to live a normal life. She doesn't feel sorryover yourself. She works (fortunately with women who understand her ailments), she wants to finish studies she started a long time ago …
- There are different reactions to an incurable disease, he says. - Many times I hear from girls that the disease allowed them to look at life differently, start to value it, enjoy small successes. I feel different. I do not agree to this disease and I do not intend to become friends with it. I have to live with her because I have no choice. I try to keep it as little as possible on my daily plans. But we'll never be friends. In fact, I live day-to-day with no distant plans. I don't know how I will feel, will I be admitted to the hospital again, or if another operation will be necessary. It pisses me off that I have no control over my own life. Endometriosis is terrifying. - I once heard from one of the girls that she would prefer to have cancer because it is possible to cure it. How much desperation it takes, how much anguish it takes to say that. But it is so. Endometriosis can drain all life energy - says Kasia.
Tame the disease
The creation of the Polish Endometriosis Association (PSE) was decided by accident. Kasia met other sick girls via the Internet. They had similar experiences and thoughts. They wanted to improve the fate of sick women a little, but also to popularize knowledge about endometriosis. Formally, PSE has been in existence since April 2011.
-What are our tasks? First of all, we want to reach out to women with a real risk of endometriosis, explains Kasia. - Late diagnosis and improper treatment can lead to many complications that significantly worsen the quality of life, and in rare cases - even life-threatening. That is why it is so important to tell girls about all aspects of femininity.
Only an open conversation on this topic allows you to assess whether the functioning of the body is normal or whether it should be worrying. We organize meetings in schools where we talk about the symptoms of endometriosis and encourage self-observation of the body and physiological processes.
But the most important group that the association wants to support are already diagnosed women struggling with the consequences of the disease. Endometriosis is associated with chronic pain. And it's not just about physical pain. Many women struggle not only with the disease itself, but also with its many consequences, such as infertility. This is the cause of anxiety, stress and even severe depression. Support from a psychologist and contact with other sick people has a profound therapeutic effect.
-Swe try to help these women in their daily life with the disease -underlines Kasia. -With this in mind, we organize a workshop "Convert endo to endorphins". It is a kind of optimism campaign, during which we present various methods of dealing with the consequences of endometriosis through exercise, relaxation, dietetics and psychotherapy. There are also regular local meetings of support groups. It sounds official, but it's really just chatting over a cup of coffee and a cake, and the topics of conversation often differ far from endometriosis.
- We believe that increasing awareness of endometriosis in society should also be done through cooperation with doctors. A woman with endometriosis is a difficult patient - emphasizes Kasia. - The specificity of this disease means that the treatment process, with any barrier in patient-doctor communication, may limit its effectiveness, reduce satisfaction with therapy and cause frustration on both sides. Hence the idea of a workshop for doctors. Recently, we had the pleasure of working with students of the Medical University of Warsaw.
PSE initiated efforts to classify endometriosis as a chronic disease, which was to enable drug reimbursement. The petition was signed by a lot of people, leading Polish gynecologists, people of culture and science. These activities were supported by the Polish Gynecological Society. It was a very important event. The association was able to pay attention to the seriousness of the problem. So far, one preparation has been added to the list of reimbursed drugs. But the girls do not give up, they fight for other drugs used in the course of endometriosis to appear there.
- We learn to live with this disease - explains Kasia. - We put great emphasis on education, we try to fight myths (e.g. that menstruation must always hurt), we want to break the taboo of women's diseases. Half of the world's people have periods for most of their lives. How can you sweep this subject under the rug?