You know what pisses me off the most while writing this? That Word underlines me in red the word "endometriosis" inflected by all cases! Proving once again that the knowledge about this so common disease, affecting one in ten women, is frighteningly negligible … - says Monika Ośka-Trzcińska, who has been struggling with endometriosis from the age of 14.

Do you remember the episode of "Millionaires", in which one of the participants was asked: "Endometriosis is a disease of the mucosa traveling deep into the body. Mucosa of what"? The man did not know what to say - first he wanted to choose the stomach, then it stood on the throat. However, it was about the uterus, so he had to say goodbye to the next game for a million. Only that "uterus" is also a not entirely correct answer.

As indicated by the latest research1 , responsible for the appearance of endometriosis is not at all "the wandering mucosa (i.e. the mucosa, endometrium) of the uterus", but the cells with a structure to it similar. And this significantly changes things, explaining why this disease is diagnosed not only in menstruating women ( although they constitute the vast majority of patients), but also in young girls or postmenopausal women, and even - in individual cases - men who have a uterus - as you know - they don't have.

But what exactly is this mysterious disease all about? During the menstrual cycle in a he althy woman, the above-mentioned mucosa grows in - which is crucial - the uterine cavity. During the cycle, the mucosa peels off, which causes menstruation.

However, in the case of endometriosis, its foci are located outside the uterine cavity. They also increase and bleed each month, but the blood has no way of getting out of the body. Implants can be located in very unusual locations, even in the brain.

- Recently, a teenager with endometrial-like cells become located in the paranasal sinuses was reported in a worldwide support group for women with endometriosis, causing the girl to bleed from her eyes during menstruation. The sick people looked for help from doctors from all over the world - says Anna Janocha, founder of the Endometrioza group on Facebook, organizer of the first EndoMarsz in Poland.

These growing and bleeding outbreaks of endometriosis cause inflammation, and the body tries to heal itself from the inside out.

Why is this happening? Scientists are constantly trying to answer this question. The widespread theory of tissue migration is questioned by many specialists. After all, if the tissue from the uterus wandered, it would show the same activity as the endometrial tissue, and it is not - as mentioned above, they are biochemically different.

Two different hypotheses related to endometriosis are currently being tested: the first is an abnormal response by the immune system that should be fighting tissue that is in the wrong place and environment (i.e. outside the uterine cavity), but it doesn't. Possible modifications of the tissue that got outside the uterine cavity are also examined.

Many researchers compare the mechanism of action of endometriosis to those in neoplastic diseases because it is likely that endometrial tissue is transformed into an aggressive form, forming infiltrates and attacking organs.

Princesses "Oh, it hurts!"

- I remember my first period, actually the time right before it. I was 14 years, 4 months and 4 days old. It was Saturday night and Sunday night, and I was writhing in pain on the bed. I could not sleep. I got drops on my stomach because everyone thought I ate something that hurt me. It was only on Monday that I started bleeding and I even remember that I was happy because almost all the girls in the class had their period and I could finally join their group and talk in the corners of the school corridors about "those" things - says the endometriosis patient Monika Ośka-Trzcińska .

She adds: - I don't know if I was ever happy with the thought of menstruation after that. The following months made me realize that these days will not be anything easy, although I probably did not expect then that the biggest challenge would be to survive them somehow.

Unbearable pain during menstruation is one of the most frequently cited symptoms of endometriosis. But what does it mean "hard to bear"? Probably most women, if asked about it, would say that they struggle with pain during their period. So what's the difference? Its scale in endometriosis is mentioned inAnna Janocha .

- Some time ago I thought I had twisted my leg. After the fall, I passed out, didn't scream, laughed at being clumsy. After 10 days, however, I saw that my leg was not healing. I used to be a dancer so I figured it was probably something with a tendon. In the end, I went to the hospital, had an X-ray, my leg was twisted, and I was very calm - I only felt discomfort. The doctor looked at the picture and froze. I asked him if I would dance soon, because New Year's Eve was just around the corner. He replied that no -a council gathered, they wanted to screw, because it turned out to be a fracture with a bone shift. The very moment of the fracture, walking without plaster for 10 days, examination in the hospital - it was nothing compared to the pain I felt during my period.

Despite this fact, women often hear from gynecologists that "such a woman's beauty", "a woman must hurt", and even that they are princesses "oh, it hurts".

Aneta Binkowska : - Before my period, I was accompanied by terrible stomach pains, which with time began to manifest themselves also during ovulation or other normal days. Visits to the gynecologist did not bring any results, but the gynecologist's opinion about endometriosis was simple: nothing can be done about it, it must hurt.

Monika Ośka-Trzcińska : - If doctors did not allow women to suffer, did not treat it indulgently, endometriosis would be diagnosed much faster! Men hardly hear in doctor's offices: "It hurts, because that's your beauty", and probably most of the estimated 200 million women in the world suffering from endometriosis at some point in their lives heard this sentence.

8 years - this is the average waiting time for a diagnosis in the world

It is estimated that up to 10% of the population may have endometriosis, which means as many as 2 million women in Poland. On average, they wait 8 years for diagnosis. Why? As you can see in the graphic above, the symptoms of the disease are not specific, they can be confused with many other ailments, in addition, in different women - e.g. due to the different location of the foci - endometriosis may be different. Moreover, it is not known (ultimately) what the cause of this disease is.

No wonder then that women go to the gastrologist, urologist, proctologist or endocrinologist with their symptoms before finally - and if at all - they go to the gynecologist. With gynecologists, however, it can also be different:

Monika Ośka-Trzcińska : - Living with this disease, I feel weak and strong at the same time. I learned to rely only on myself (and my husband, without him and his support, I don't know how I would have managed). I know there is no point in calling the ambulance - they will not come; go to the emergency room - they won't give me painkillers, they'll tell me to make an appointment with my gynecologist; rely on doctors who are not among the handful of specialists in this disease - they will not admit their ignorance.

Anna Janocha : - I do not know a myth about endometriosis that would not affect me, including the fact that such a disease does not exist. When I wanted to get pregnant, the internist ordered a package of standard tests and sent them back for a gynecological examination. In the sameof the clinic, I went to my longtime gynecologist. He stated that the best way to deal with my ailments and get pregnant was to go on vacation. My blood chilled my veins - I would add three Hail Marys to this vacation and rest - up to 50% of endometriosis patients also suffer from infertility - so relaxing on vacation is not a cure. When I finally found the right doctor, he asked me three questions: are my periods painful, heavy and how long I have been trying for a baby? When I answered yes to the first two questions and "more than a year" to the third, he said, "It could be endometriosis." I waited 17 years for the diagnosis.

Aneta Binkowska : - I found out about endometriosis by accident. I had an appointment with a gynecologist, who was also an endocrinologist, to check my thyroid gland. Therefore, the doctor performed an ultrasound examination and found a 7 cm tumor on the right ovary. After additional tests, it turned out that the cancer markers were elevated. I had the worst thoughts. Only then did I find the recommended doctor.

Magdalena Chrzanowska : - The diagnosis was suspected for the first time when I was 26, the disease was already advanced. Then I started looking for doctors who would be able to help me. As far as I can remember, I visited about 5 of them before meeting one who specialized in the treatment of endometriosis.

This right doctor was most often recommended by another girl, googled on the Internet, or suggested by a different gynecologist than the one they first found. Because there are also some doctors who can admit that they do not specialize in endometriosis.

must be privately

As reported by endometriozapolska.pl, EndoWomen in the world have to visit an average of 10 doctors before they finally find one who will show them the appropriate treatment path. Treatments, let's add, which they often have to treat themselves. In November 2022, MP Adam Korol submitted an interpellation to the Marshal of the Sejm on medical care for patients with endometriosis. Its addressee was the Minister of He alth, whose MP asked about endometriosis: the scale of the incidence, assumptions of medical care, register of patients and financing of their treatment.

The responses revealed that an average of PLN 2,100 is spent on "hospital treatment" for patients with endometriosis. 3560 patients benefited from this help (and let us remember that an estimated 2 million women in Poland suffer from illness). Is the PLN 2,100 a lot? Not. Laparoscopic surgery to remove the foci of the disease costs about PLN 20,000. 103 zlotys is in turnthe average amount for outpatient specialist care of patients - services were provided to 10,461 women. For comparison - one visit to a doctor specializing in endometriosis costs PLN 300, and the lines often last several weeks.

Monika Ośka-Trzcińska : - At some point we started considering leaving the country because of my illness, but not only. In order to be able to function normally in the fourth (the most serious) degree of endometriosis, while fighting infertility, you need to have a lot of financial resources. I think that the disease reduced our family budget by PLN 50,000-70,000. I would like to live in a country where I am looked after by specialists, where I do not have to pay for everything myself and thus struggle with increasingly serious financial problems. In a country where, when I call an ambulance with the last of my strength, vomiting in pain and lying on the floor covered in cold sweat, I will hear "we're going to see you".

Patients with endometriosis, depending on the specific case, are given painkillers, anti-inflammatory, antispasmodic and hormonal drugs, and undergo treatments.

The two most popular treatments for endometriosis are ablation (burnout) and resection. During the firing procedure, an electrode or a laser is used - this is a minimally invasive method, the patient recovers quickly after the procedure, but the risk of relapse is high - the foci are only burned superficially.

On the other hand, the excision of the focus can be performed, for example, with a surgical blade or a plasma knife. It is a more difficult and radical method, but due to its effectiveness it is considered the gold standard of therapy. However, more important than the tool itself is the technique of total excision of lesions as well as the skills and experience of the doctor, especially in the field of identifying endometriosis foci during surgery, so as not to miss any changes.

Despite introducing the above methods, in the case of endometriosis, there is no 100% certainty of a cure. Symptoms of the disease may still accompany a woman, although in most cases, starting treatment greatly facilitates the daily functioning of the sick.

Anna Janocha : - I have not yet decided to undergo the procedure, so far I am minimizing the symptoms of the disease through proper diet, acupuncture, physiotherapy, yoga, I try to remember about stretching the pelvic floor muscles , I have massages. These methods really work - I struggle with much less pain than before. All these methods, however, generate additional costs - not only visits to specialists, but also purchases, e.g. organic bread costs PLN 8, regular bread - PLN 3-4. Fortunately, my doctor - specialist inthe field of endometriosis treatment - not only recognizes the effectiveness of my actions, but also recommends using these methods to other patients as part of his practice.

Aneta Binkowska : - When I found out about the disease, I started looking for information about it on websites and blogs. It turned out that in the fight against endometriosis, an important point is diet, a he althy lifestyle, and taking care of your physical condition. At the next follow-up visit, I asked the attending gynecologist about it. Unfortunately, I did not receive confirmation of this information, and what's more, I was treated like a person who is insane. The doctor said that no diet or exercise would be effective. At that moment, I realized that the doctor who has been treated for over 4 years is not able to help me. Moreover, he has failed my confidence, he has disappointed me.

I must admit that sticking to the recommendations was very hard. The hardest attempt was to give up my eating habits, products to which I was very used to every day. Until now, I avoid dairy products, sugar, gluten (we bake spelled bread ourselves with sourdough) and do not eat meat (only fish). He drinks a mixture of herbs for endometriosis every day. Today I can safely say that the diet has worked wonders!

Magdalena Chrzanowska : - Thanks to changes in lifestyle, implementation of modifications in nutrition and exercise, acupuncture, and also thanks to the recent laparoscopy of excision of endometriosis foci, I can say that my quality of life has improved she corrected. Pain during menstruation is still there, but you can now control it.

Monika Ośka-Trzcińska : - I trod my path in coping with the disease and alleviating its symptoms. This disease prevents many women from functioning normally and locks them up at home due to the pain and accompanying symptoms, so I appreciate that I manage to somehow break out of her clutches.

I have gone vegan, avoiding sugar and processed foods. I try to do yoga regularly. I show up in osteopaths' offices when the pain is getting worse. I work from home when I feel tired. I have the support of a psychotherapist. I try out more herbal recipes. I am not perfect in all these activities, but I treat it as a constant striving for better.

The power of awareness EndoSióstr

Magdalena Chrzanowska : - Endometriosis is a disease whose causes and mechanisms are not fully understood, therefore there is no single effective treatment. This is a very frustrating situation for many women, especially as we face many ailments that are notunambiguous. This is one of the reasons why we visit so many doctors and specialists before a diagnosis is made. The disease is not visible in research and the symptoms can be very confusing. Hence the need to spread knowledge about endometriosis and the skills of doctors in this field.

This is what she wants to doAnna Janocha :

- I really care about building awareness among women. There is still no information on endometriosis in Poland - and if it is, it is often archaic and contradictory. I participate in support groups for women from all over the world, translating medical English sources. Together with other women, we observe the latest publications on endometriosis - we know about the latest research very quickly - we enter keywords related to our disease in the research databases on an ongoing basis. We create a list of doctors supporting our fight against endometriosis, we organize workshops.

Our men help us a lot. My husband always supports my actions, for which I am very grateful. We are also helped by a programmer - the spouse of one of EndoKobiet. Once, at a fair, I met a man from a company that produces ecological hygiene products. I said they were great for endometriosis, he replied that he knew it very well. I asked if he was an EndoMan. I found out that it was exactly like that. Dr. David Redwine, an eminent specialist in the field of endometriosis, became interested in this disease because of his wife suffering from it. We all create one great EndoFamily.

March is endometriosis awareness month. This year, for the first time - on March 30 at 2 pm at Castle Square in Warsaw - EndoMarch will be held - a meeting of women struggling with this disease.

Anna Janocha : - It will not be a protest, but a demonstration that we are, that such a disease exists. We are committed to building the EndoWomen community and deepening their and the entire society of knowledge about endometriosis. We invite all EndoSisters to this meeting! Unfortunately, it often happens that negative things are heard loudly, we carry a positive message that women are not alone in all this, that we are together to support each other, but I hope they will hear us too.

Magdalena Chrzanowska : - Apart from spreading knowledge for ourselves, for other women - who suffer from endometriosis or those who may have it, but do not know what is the cause of their ailments - we are also fighting for the future for the next generations of women, for better care, better and earlier diagnostics. I hope so and deeply believe that these changes will happen. There are more and more of us together with such convictionwe gather strength to act in this area.

Monka Ośka-Trzcińska : - I would like to reach out to women with only one message: Don't let yourself be told that pain is normal, and don't let yourself be dismissed. He always has a cause! Fight, because it's your life and he alth, and no one will do it for you.

Where to go for help

You suspect or have been diagnosed with endometriosis, but don't know what to do next? You can get help here!

  • Overcoming Endometriosis Foundation

Facebook groups and profiles:

  • Endometriosis
  • Endometriosis - an independent endometriosis profile with a support group
  • Endometriosis-ANTIDOTUM
  • Endometriosis - how to live with it?

Web pages:

  • endometriozapolska.pl
  • endometrioza.org

Sources:

1. M. in. https://www.ncbi.nlm.nih.gov/pubmed/23721717 and http://centerforendo.com/endometriosis-understanding-a-complex-disease

Category:

Female diseases