March is the month of awareness about endometriosis, a disease still little known even by the doctors themselves, from which millions of women suffer in Poland. People struggling with great pain and suffering wait even ten years for a correct diagnosis, and many of them have heard more than once that “that’s their beauty” and that nothing can be done about the disease. What does endometriosis look like?
The cause of endometriosis is not known. The disease, which causes the growth of endometrial tissue outside the uterine cavity, causes painful symptoms that worsen over the years with fluctuating hormones. Patients are sent to another office, because doctors not only do not have the appropriate tools to diagnose the disease, but often downplay the symptoms of women fainting from pain.
One of such people was Miriam, the heroine of “Your Body Uncovered”, who had been struggling with the disease for years. Thanks to 3D computer animation, she was able to see what a healthy uterus with fallopian tubes should look like, and how looks like a “mutated” uterus attacked by a disease. In this example, you can clearly see that her uterus is almost five times larger and has a different shape.
Endometriosis can be diagnosed during surgery. On the surface of the pelvis, flat or raised spots are visible, which can be transparent, white, brown, red, black or blue.
Uterus with endometriosis vs. healthy uterus BBC
Photo: YouTube screen
There are noticeable scars between the tissues where endometriosis has spread. With deep endometriosis, nodules of various sizes appear, on the fallopian tubes there are visible cysts filled with a thick, brown fluid, called “chocolate cysts” because of their appearance.
What is endometriosis?
Endometriosis is a disorder in which tissue similar to the lining of the uterus grows outside the uterine cavity, “invading” the ovaries, intestines and the tissues lining the pelvis. Occasionally, endometrial tissue also spreads beyond the pelvic area. The hormonal changes of the menstrual cycle affect the misplaced endometrial tissue, causing inflammation and unimaginable pain. It begins to grow, thicken and crack. Over time, the tissue that has broken down has nowhere to go, becomes trapped in the pelvis, forming scars and adhesions, connecting the pelvic organs together.
What are the symptoms of endometriosis?
The symptoms of the disease can vary. Some women experience mild symptoms, many struggle with great suffering. The severity of the pain does not indicate the degree or stage of the disease. You can have a mild form of the disease and still experience excruciating pain. It is also possible to have a severe form of the disease and experience very little discomfort from it. If left untreated, endometriosis can lead to a condition that requires removal of the uterus and fallopian tubes.
The most common symptom of endometriosis is uterine pain, in addition to:
cramps lasting from a week to two before and after menstruation
heavy bleeding during your period or bleeding between periods
pain during sexual intercourse
discomfort with defecation
lower back pain that can occur at any time during the menstrual cycle.
Endometriosis: an insidious disease
So far, no medicine has been invented that would completely eradicate the disease. You can only alleviate its symptoms and control tissue growth. The cost of surgery to treat endometriosis ranges from $20,000 to $80,000. zloty. The National Health Fund covers only a fraction of this price (PLN 2,100 per year).
Sylwia, who told us about her battle with the disease, had been waiting for a correct diagnosis for ten years. – Doctors in Poland do not have the tools and, above all, the appropriate knowledge to diagnose endometriosis, but they also very often ignore women – which is reprehensible. They repeat that the period must hurt, that our beauty is such, suggest that the patient’s pain threshold is too low.
Endometriosis: hope for patients
In December last year, we reported that a Polish team managed to develop the world’s first non-invasive test for women with suspected endometriosis. “This method consists in extracting the collected material and then using the EndoRNA test, which detects an increased level of expression of the FUT4 gene. The result, depending on the workload of the laboratory, may be available even in 48 hours” – described Dr. Kawecki.
In January, the first endometrial cyst sclerotherapy center in Poland was established at the Independent Public Clinical Hospital No. 1 in Lublin. Gynecologists from the Lublin facility perform this procedure as the only one in the country. It can be of great help in for patients who have problems with getting pregnant, as well as for those who struggle with severe pain resulting from the presence of a cyst.
On March 7, a meeting of the Parliamentary Group for Endometriosis was held. “I hope that all demands concerning women suffering from endometriosis in Poland will start to be met and we will only ‘adding bricks’ to the system, which will allow us to take care of a woman suffering from this disease” – said Lucyna Jaworska-Wojtas, president of the Foundation Beat Endometriosis.
Patricia Kazadi candid about her illness. “I went to bed and thought it was over”