"It seemed to me that I was in hell": How do I live with endometriosis
The inner layer of the uterus is called the endometrium. - it is to him that the egg is attached after fertilization, and it is updated once a month during menstruation. Sometimes endometrial cells begin to behave incorrectly and seize new territories where they have no place. They can consolidate anywhere - to create obstruction of the fallopian tubes, to accumulate around some vessels in the abdominal cavity or, for example, to consolidate in the lacrimal gland; wherever they are, they continue to behave as if they are still in the uterus, and they will be renewed once a month, which means they will bleed. Sometimes these cells grow inside the muscle layer of the uterus - this is called adenomyosis. Inside the muscle tissue, a peculiar capsule with endometrial cells arises, which at some point begins to bleed. Inside the muscle there is a cavity with blood, from which there is no exit, and sooner or later the inflammatory process begins.
Why is this happening, while nobody knows: there are tests for genetic predisposition, but all women living an active life in big cities are at risk. Endometriosis can be called a common disease: according to some information, every tenth woman has it; This means that if a gynecologist takes ten patients a day, he may face this disease daily. Nevertheless, it is far from always possible to make a diagnosis immediately - sometimes it is preceded by years of treatment of non-existent diseases and even surgery. Katya Dolinina told how she lives with endometriosis and what difficulties she had to go through.
I am twenty-five years old. I am a fashion designer by my first education, and now I graduate from the magistracy on criticism and film theory. About five years ago, I opened with my young man a brand of clothes, but both the business and the relationship were gone. Now I am writing my dissertation on Iranian cinema, I teach a lot (I am a private teacher of painting and drawing) and so far I have no plans for further protection. When I was a teenager, I went to the hospital a couple of times with an abdominal pain, but I was released a few days later, without any explanation. The older I got, the more often it happened. Once a couple of months I could wake up from a dull pulling pain, get up, take a pill and go to bed. For some reason, during the day I forgot about it and, until the pains became regular and began to capture the daylight hours, I didn’t consult a doctor. I came to the gynecologist with this problem at nineteen - and only five years later I received a long-awaited piece of paper with my real diagnosis.
The first gynecologist said that I have uterine fibroids, even two - but myoma cannot hurt. The doctor added that for a woman to endure the pain is normal, and advised to drink some weed like the “red brush”. I did not drink the herbs, but continued to endure the pain. Once a couple of months I did an ultrasound, each uzist said that it looks very strange and actually looks like a capsule with fluid inside the uterus, but this cannot be - in fact, of course, it was a capsule with fluid inside the muscle . The pain intensified, I drank more and more painkillers. At some point I caught myself on the fact that if I leave the house without pills, then I start to panic - and I rather ran to the pharmacy. In my memories of that time, the pain is permanent. I could sit in a meeting with friends, a couple of paintings or English courses and just sway from side to side, trying to maintain an adequate look. I slowly replied, could not concentrate on anything and did not understand what to do - because the doctor said that everything was fine with me.
The doctor added that for a woman to endure the pain is normal, and advised to drink some kind of weed like a “red brush”
In parallel, I started having problems with the immune system: in six months there were more than ten episodes of hydradenitis (inflammation of the sweat glands in the armpit), each of which ended with surgery and a series of painful dressings. I got allergies to some patches and left traces like burns. When my stomach did not hurt, my armpits were cut, and vice versa. To this was added a constant temperature and antibiotics. The surgeons joked that I had to bathe in alcohol and change the razor, and it seemed to me that I was in hell. Every time, realizing that it starts again, I just cried. The immunologist, to whom I eventually got, was so impressed with my medical history and my exhausted appearance that I set up an immunomodulation course without tests — after this the battle with inflammations ended. Immunity problems subsequently returned, and I took another two or three such courses. These problems are the result of adenomyosis: a chronic inflammatory process inside the body causes the immune system to work for wear.
My parents did not particularly delve into this story, they said to go to the doctor if something hurts - and if the doctor said that everything is fine, then it is. In the summer after the fourth year I promised my parents to go by car to my grandmother, and this is two days from St. Petersburg. Before that trip, they only knew about the pain from my words in the format “I had a stomach ache again” - and this was the first time they saw me fading, becoming covered with cold sweat, crying softly and throwing pills. Only after this, my family began to take the problem seriously; When we returned, I went to the doctors, who were advised to my parents, and from there I went to my surgeon. When I went to the operation, I had three or four mutually exclusive diagnoses from different specialists. The doctor said that it didn’t matter what was there - you had to remove it.
At the age of 21, I had the first operation, and it was one of the happiest moments of my life. I began to take light hormones, a new life began without pain. I led an active lifestyle, three workouts a week, English courses, and then business courses were added to my studies and work as a tutor. After a couple of months, the belly began to pull again. On a routine inspection, the uzist called one of those diagnoses that I had been given earlier, and I realized that everything was back. A week or two later I was operated on again. I joked that this was a unique opportunity to rehabilitate myself for my boyfriend and friends who did not come to the hospital for the first time. After both operations, the histologists who examined the tissue samples with a microscope wrote that I had a leiomyoma (a benign tumor), and there was not a word about endometriosis. Nevertheless, the doctor who operated on me prescribed a drug for the treatment of endometriosis - after all, she saw with her own eyes what was inside of me.
On this drug, everything was good - except that it is very powerful and with a bunch of side effects, and it is usually prescribed for several months. In fact, it introduces the body into an artificial menopause. I drank the medicine for a year and I was fine, but because of the risks associated with it, I was told to cancel it. A month later, I realized that something had changed inside, I went to an ultrasound and I saw new nodes on the screen. It was a couple of months before the graduation collection defense. For almost a month I lay at home and cried. I do not remember what I was then pulled out of that state, I remember that I was reading the book “Depression is canceled” and forced myself to leave the house. It seemed that the world was closed, there was nothing to breathe. Then something snapped in my head, and I looked at the situation from the side. Then we broke up with a young man, I stopped crying and was able to otshit collection and get a diploma.
I worked a lot, made some kind of shooting, went to German courses, and in general I was not up to the doctors. My stomach started to hurt again, I was throwing pills, and one evening, when I was at home alone, the pain suddenly swept over in an instant, my legs gave way, and I just rolled down the wall in the corridor. Komarov's dad arrived faster than the ambulance. I called the doctors at eight o'clock, took me only about eleven, saying that, most likely, it was appendicitis. By midnight I was in the first medical institute, where everything is beautiful, as in the American TV series about doctors. I was put on a gurney and taken to rescue. But that's bad luck - they quickly realized that it was gynecology, not appendicitis, and the gynecological wing was being repaired. In the end, I waited in the emergency room to go to another hospital. Anesthesia was not allowed to save the picture of the symptoms for the following doctors. I was pounding, teeth were chattering and for the first time in my life I was howling in pain. In the end, when I finally ended up in the hospital, I was treated with antibiotics, removing "inflammation of the appendages."
In January, I was sent to a new surgeon in Moscow, saying that the brightest luminaries should deal with such intricate cases. Several times I went there to receive, received a federal quota for the operation and by April I had to wait for it. They sent me all the documents and set the date for hospitalization, a few days before I left, I phoned the surgeon's assistant and he clarified the details. I arrived there with a night train with all the things, and when I entered the doctor’s office in the morning, she said that she was on vacation from tomorrow, and then she started working in another hospital. Anecdote to Kant: suspense, suddenly turned into nothing. She did not understand what the problem was; her assistant timidly said that I had come from another city, to which she replied that it was no big deal, "she would come again." I sobbed in the hallway, not understanding how to react to that. I went to Pushkin, looked at Cranachov and returned home. I understood that no matter how cool and famous this doctor was, I would not lie down on her operating table - I did not trust her anymore.
The doctor did not understand what the problem was; her assistant timidly said that I had come from another city, to which she replied that it was no big deal, "she would come again"
Gathering my courage, I went to the doctor who performed the first two operations for me. In June 2016, I was given a third operation, during which it turned out that within a month of my wanderings through hospitals with inflammation of the appendages, these same appendages disappeared. Nobody will say exactly what happened then, but probably it was a torsion of the fallopian tube, and I lost my right ovary. The operation was long-awaited, and everything would be fine, but in that ill-starred hospital I was again given a histology conclusion about leiomyoma - and it would not matter if it did not bind the doctors in prescribing medications. I did not have the right to officially prescribe the only medicine that helped. Then I took the glass and went to the laboratory of the oncological center. A week later I was holding a piece of paper on which was written "adenomyosis node". I'm not sure that the laboratory staff understood why I was so jubilant.
In the entire history of my illness, the treatment consisted of three laparoscopic surgeries and four variants of hormonal drugs - I did not consider the attempts of the first doctor to prescribe me herbs and send the pain to a psychoanalyst. Now I drink pills every day for more than two years: the main hormonal drug and additionally others for the prevention of thrombosis. Previously, it seemed that drinking pills every day at the same time was difficult, now I got used to it. A couple of times I forgot and missed several days - but the reminder was severe pain, once accompanied by bleeding. I need to do ultrasounds regularly and donate blood to check the clotting and liver parameters. Sometimes I do it without visiting the doctor, because I already know what to look for, and I go to the doctor only in case of any deviations. You can not go to the baths, saunas, solariums and the like. Do not recommend sunbathing at all and ride a bike. In theory, as with any other drugs, I can not drink alcohol - this is the only restriction on which I close my eyes.
Even when I was diagnosed with the first diagnosis, myoma of the uterus, I experienced this very hard. I had a monstrous feeling of inferiority, I felt broken. This raised a wall between me and my friends, because no one was willing to discuss it with me. Parents also did not take this news as something to talk about. Are you not dying? So everything is in order. And when the situation began to heat up, there was no time for discussion. Sometimes I wanted to have a “real” disease, something life-threatening, where I could fight and win or lose. Because dying is not as embarrassing as suffering endlessly.
At the very beginning I shared my problems with the master at the academy, she was very supportive of me then. Then I heard her telling my story to another of our teachers, to which she betrayed that I was just sitting on pills and making up my own pain. In general, I often heard that I didn’t look sick and thought out everything - and sometimes I answered that I just could paint well. "If you do not find a sexual partner for yourself and do not become pregnant in the next six months, you will remain disabled," is a phrase, after which I cried for the first time in my doctor’s office. When he was discharged from one hospital, when asked whether he could play sports, the gynecologist said: “Go to the gym, maybe you can find a man there”.
When the same thing is repeated over and over again and it seems that the pain will not end, then the hands drop. There were several periods when the forces were not at all, and the people around did not understand my depression. It was scary when there was nothing left but misunderstanding why this was happening to me. After a month in hospitals, I was so desperate that I was ready to quit traditional medicine and go to any healer, fortune teller, homeopath, but I went to a psychotherapist. In addition, my work and German courses helped to survive what was happening; One and a half to two hours with other people is a good way to disconnect from your life and problems, to plunge into another world. This is a real reboot. I am a happy person in this regard: I was very lucky with the students and their success gives me strength. I am glad for them, as for myself, when they go where they like, win contests or participate in exhibitions.
I have such a long and strange story that I would like to bring to something, but only there is no moral in it. I can not give universal advice. Anywhere there may be a doctor who goes on vacation on the day of your surgery. Probably, I would like the girls to be a bit more attentive to their health and not to trigger the situation. To believe their feelings more than the words that endure pain - this is the female share. To not be afraid to change the doctor, if something seems suspicious or you simply do not explain. To support each other and not be afraid to talk about what worries, and were able to be close to those who have difficult times.