It is estimated that one in ten Polish women may suffer from endometriosis. If this is true, as many as 2 million women are affected. What’s worse, the statistics also show that the average waiting time for a diagnosis in our country is nearly 10 years from the onset of the first symptoms. The lack of specialized doctors in the treatment of this disease causes women to wander around the offices of gynecologists, surgeons and gastrologists, and finally see a psychiatrist. They lose hope of having children and lose the chance of a normal life. Dr. Mikołaj Karmowski, MD, an expert in the field of endometriosis treatment at Medicus Clinic in Wrocław, in an interview with Medonet explains why this disease is defined as devilish and what treatment should look like.
- Dr. Mikołaj Karmowski: Unfortunately, our system displaced endometriosis from diagnosis and treatment
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Monika Zieleniewska, MedTvoiLokony: Endometriosis is associated with severe pain, and it turns out that …
Dr. Mikołaj Karmowski: It’s a disease that hurts a lot or doesn’t hurt at all. Its etiology has not been fully understood, although we know that it is secretive. A woman who does not feel any discomfort can take away the chance of having children. It causes primary infertility, destroys the gonads – ovaries and fallopian tubes, giving infiltrates in the smaller pelvis, uterus or causing a twin disease called adenomyosis.
That is?
Adenomyosis concerns the uterine muscle, where the endometrium moves through the transition zone, creating hemorrhagic foci and inflammation. Because of the retention of blood, your periods will become heavier and clots will form. Blood clots and heavy bleeding are symptoms of uterine adenomyosis, which results in the destruction of the gonads, and a woman who is not in pain cannot have children.
On the other hand, there are patients who suffer, howl in pain for many years after puberty, and find out that they are so beautiful. Endometriosis attacks in various ways, it can destroy a woman’s life, both somatic, by destroying the organs and the mental. Patients are often not diagnosed because they do not see a specialist. Most doctors neglect them, bounce off many gynecologists and go to surgeons, and from surgeons to gastrologists, from gastroenterologists to psychiatrists, and eventually lose their job, partner, husband and chance of a normal life. This disease is truly the nightmare of the XNUMXst century.
Does it have any age frames?
It starts with puberty. My youngest patient was 11 years old. She started menstruating at the age of 10, and a year later with an advanced ovarian tumor and the so-called In the course of an acute defect of the reproductive organ, it came to us in an acute state. We corrected the developmental defect, but unfortunately the damaged fallopian tube and ovary had to be removed, so her chances of having a baby in the future were halved. However, my oldest patient was 74 years old.
Endometriosis is believed to occur in the reproductive age, i.e. between the ages of 20 and 40, and can attack both after the menopause and during puberty. Some studies say that already in the period of embryogenesis, i.e. in fetal life, the endometrium can be transplanted beyond the reproductive organ. However, the most difficult to explain the foci of this disease, for example, in the brain, lungs or eye, in places that are not connected with the abdominal cavity. I had a patient with a focus on her tongue. That is why endometriosis is sometimes called the devil’s disease.
- The editorial office recommends: «Endometriosis is like a silent cancer. It’s a disease from hell »
If we are asymptomatic, how can we take care of ourselves?
The most important thing is good diagnostics. However, the diagnosis and treatment of endometriosis should take place only in reference centers, in endometriosis treatment clinics.
Dlaczego?
Because experts in the field of endometriosis treatment are able to diagnose it in a clinical trial – transvaginal or transrectal ultrasound supplemented with a gel pad. If the patient suffers from pelvic endometriosis and has, for example, an infiltration of the colon or rectovaginal septum, they will see it in the first minute of the examination.
An ordinary gynecologist can’t do that?
Once in the United States, such studies were done, random gynecologists and obstetricians from clinics and experts, specialists in the treatment of endometriosis were taken, and the hits were zero-one. An ordinary gynecologist does not know where and what to look for. If someone does not operate on endometriosis, does not make a diagnosis, then the most important thing for him in ultrasound is to see the ovary, and the ovary is usually the top of the iceberg. It is like with the Titanic – it was flooded by an iceberg, 90 percent of which. was invisible. In the case of endometriosis, the doctor sees a small lesion or tumor on the ovary and says: “you suspect an endometriotic chocolate cyst”. Meanwhile, the woman has a tumor in the intestine, in the ureter, hydronephrosis, infiltration of the innervation, or a tumor in the bladder, and it turns out that it is too late. That’s why an expert is needed. Unfortunately, our system displaced this disease from diagnosis and treatment …
So what about the sick?
I was approached by a 36-year-old patient with advanced endometriosis, a huge tumor in the large intestine, passing a stool every two weeks, howling in pain, calling for an ambulance three times a week, who had previously visited 36 gynecologists. Everyone told her they couldn’t see anything.
So I ask, is it the fault of these doctors or of a system that has not educated experts? A doctor who has no idea how to look and where to look for a tumor will not be able to do it. If there are no changes in the ovaries, she will be fine. This disease requires the cooperation of doctors of different specializations, one person will do nothing. For my success, 8 or 10 people work in the hall.
The team matters.
The team for the treatment of endometriosis includes assistants, anaesthesiologists, instrumentalists, surgeons and urologists. We operate on patients sometimes 13 hours non-stop. So how to perform such an operation in the state health care, where there are no specialists and there is no possibility of cooperation between a surgeon, gynecologist and urologist in one team? In addition, surgeons should be taught the philosophy of operating the intestines in endometriosis, because most procedures are performed differently. We only remove the tumor, nothing more so as not to mutilate it, to leave behind innervation. I keep saying that it will not help to increase spending without a national endometriosis treatment program.
What would it consist of?
The program should implement a specialist training system, create reference centers and provide funding. I am asking, what will it do if we increase the expenses for the treatment of endometriosis five or tenfold today? Will doctors start to operate better? No, because the problem is not with money, but with the lack of specialists. And even if there are enthusiasts, please imagine a 12-hour endometriosis operation in an oncology ward, and when is it time for cancer?
Such operations should be performed at an endometriosis treatment center. Special units like the West have to be created. Centers that will specialize in treating only one disease with a multidisciplinary team. That is, if I have a patient with a diseased intestine, I take a surgeon for surgery, if endometriosis has attacked the urinary system – I take a urologist, and sometimes we are all and we change. This is how the operation should look like, giving a chance for complementarity and radical removal.
It is actually far from the commonly understood gynecology …
There are three sins of a gynecologist. The first is ignorance about endometriosis. The second – medical ignorance, it is about ignoring the patient’s suffering: “so beautiful”, “my mother hurt and you hurt”. And the last sin is the worst – it is ignorance. He thinks he knows how to treat this disease, he’ll give him a pill and the problems will disappear. Excuse me, how is a 6-centimeter tumor, narrowing the lumen of the intestine, to disappear after the drug? These sins lose the doctor. Let’s beat our chest and admit how many times we said to the patient: “You’re okay, don’t be hysterical, please go to a psychiatrist.”
That sounds dramatic.
The patient falls into severe depression, cannot have sex because she is in pain, she is left by her partner. These are human dramas. Please believe me that apart from the body, we also heal souls. After the surgery, the patient must be cared for and undergo special nutritional therapy. Patients call me and write until noon at night. My phone is available on the internet and no one is calling to ask about the contraceptive pill. Suffering people are calling.
Going back to diagnosis, what tests should be done to check for endometriosis?
Certainly expert ultrasound. Vaginal ultrasound in the diagnosis of endometriosis is 96% sensitive. We supplement it with expert magnetic resonance imaging with an infusion into the rectum, vaginal gel and intravenous contrast. Good equipment and administration of an infusion are not enough, and there must also be a radiologist trained in the assessment of endometriosis. A random radiologist may describe the examination as: uterus and ovaries unchanged. So much. And we are talking about the hypogastric nerve and the ligament, the ureter and the intestine.
The recommendation of the Society for the Treatment of Endometriosis clearly states that these two studies are to complement each other, so the MRI possibly confirms or raises a question about the change visible in ultrasound. We know from experience that if we see a change in a clinical examination and ultrasound that cannot be seen by MRI, it usually confirms. Very often, if the urinary system is involved, we supplement the examinations with urotomography – tomography of the urinary system. We check whether the section between the kidney and the bladder, along this highway, which is the ureter, has been narrowed, i.e. stenosis, which blocks the outflow of urine, which is associated with pain to the kidney, or pains in the back, which may be the result of silent stasis , hydronephrosis, and a tendency to cirrhosis and kidney death. I often treat patients who have 6 or 9 percent. filtration of one of the kidneys, because the kidney, because the ureter was stenotic for years, died.
If you have endometriosis and have been looking for a diagnosis for a long time, write to us. We are waiting for your stories: [email protected]
What are the treatments for endometriosis?
There is one recommendation in the world – laparoscopic or robotic surgery. Endometriosis cannot be completely excised without an armed eye. Open surgery is not used in order not to expose the patient to an unnecessary risk of greater adhesions, complications and non-radical nature of the operation. There is one exception – endometriosis after cesarean section, because that’s where the shells, part of the muscle, are cut.
I often see patients after many open trials, the so-called laparotomies. The record holder was eighteen. This young woman has had her stomach opened so many times and the disease has not been removed. Only an armed eye with almost a microscope can see nerves. Modern surgery is a sparing surgery, its minimally invasive means a small injury, the innervation is spared, and not cut off as in open surgery. We make a full deep cut, do not burn or coagulate, these are cardinal errors. In the endometriosis management community, it is said that “first shot surgery” is essential. She decides how long the patient will be in remission.
Dlaczego?
Because endometriosis is difficult to operate, much more difficult than the worst neoplasm, it changes anatomy, clumps together and infiltrates like a tumor. It is clinically malignant, but histopathologically benign. It is a benign tumor that by infiltrating organs destroys organs causing local inflammation – a cytokine storm – activating our immune system and starting to go crazy.
The process of apoptosis, i.e. the natural natural death of cells, is inhibited and the immune system works against us. This is a hormonal inflammatory disease. Dependent on hormones and causing inflammation, hence these erosions, scars and endometrial tumors infiltrating the peritoneum, which is a neuro-synaptic mesh, which is why it hurts so much. Hence, removing this disease does not involve pinching at a time, but removing it like a weed. Only such treatment makes sense. Each non-expert operation condemns the patient to complications and subsequent treatments that lead to nothing.
Does an expert surgery guarantee a cure?
Maybe not 100 percent, but 96 – 98 percent are removed in an expert center. endometrial lesions from all organs, be it the intestine, bladder, ureters, peritoneum or ligament nerves. Then the patient has a chance to live without suffering, she has a chance to become fertile and significantly improve the quality of life. Of course, there is a small percentage of patients who suffer despite radical expert surgeries, but this is related to neuropathy, i.e. damage to the nerve conduction due to long-term existence of the disease in the innervation. We treat such patients with combination neurological therapy, often with mood-boosting drugs that change the pain threshold, and we even use psychological therapy.
We can only keep our fingers crossed for the creation of a large number of expert endometriosis treatment centers as soon as possible. Meanwhile?
A gentle appeal. If any of the ladies comes across a doctor who says: “It hurts because you are so beautiful”, let her leave the office. Do not be afraid, change your doctor, look for a specialist who will understand that you are suffering. He doesn’t have to operate, he doesn’t have to be outstanding, but maybe he will direct you to someone like that.
This may interest you:
- An insidious disease that cannot be seen. He attacks young women
- Is it endometriosis? The gynecologist answers
- Read the stories of endometriosis patients