I Felt Like I Was In Hell: How I Live With Endometriosis

Health 2023

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I Felt Like I Was In Hell: How I Live With Endometriosis
I Felt Like I Was In Hell: How I Live With Endometriosis

Video: I Felt Like I Was In Hell: How I Live With Endometriosis

Video: I Felt Like I Was In Hell: How I Live With Endometriosis
Video: How It Feels Living With Endometriosis 2023, March

Olga Lukinskaya

The inner layer of the uterus is called the endometrium. - it is to it that the egg is attached after fertilization, and it is renewed once a month during menstruation. Sometimes endometrial cells begin to behave incorrectly and invade new territories where they do not belong. They can gain a foothold anywhere - create obstruction of the fallopian tubes, grow around some vessels in the abdominal cavity, or, for example, gain a foothold in the lacrimal gland; wherever they are, they continue to behave as if they are still in the womb, and once a month they will renew and therefore bleed. Sometimes these cells grow into the muscle layer of the uterus - this is called adenomyosis. Inside the muscle tissue, a kind of capsule with endometrial cells appears, which at some point begins to bleed. A cavity with blood appears inside the muscle, from where there is no exit, and sooner or later the inflammatory process begins.

Why this is happening, no one knows yet: there are tests for genetic predisposition, but the risk group includes all women who live an active life in big cities. Endometriosis can be called a common disease: according to some reports, every tenth woman has it; this means that if a gynecologist sees ten patients a day, he may face this disease every day. Nevertheless, it is far from always possible to make a diagnosis immediately - sometimes this is preceded by years of treatment for 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, by my first education I am a fashion designer, and now I am finishing my master's degree in film criticism and theory. About five years ago, I opened a clothing brand with my boyfriend, but both the business and the relationship came to naught. Now I am writing a dissertation on Iranian cinema, I teach a lot (I am a private teacher of painting and drawing) and so far I am not making any plans for further defense. When I was a teenager, I went to the hospital a couple of times with stomach pains, but they let me go after a few days without finding any explanation. The older I got, the more often this happened. Once every 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 take over the daytime, I did not go to the doctor. I came to the gynecologist with this problem at the age of nineteen - and only five years later I received the 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 it is normal for a woman to endure pain, and advised her to drink some herbs like a "red brush". I did not drink herbs, but continued to endure the pain. Once every couple of months I did an ultrasound, every uzist said that it looked very strange and actually looked like a capsule with liquid inside the muscle of the uterus, but this cannot be - in fact, of course, it was a capsule with liquid inside the muscle … The pain intensified, and I drank more and more painkillers. At some point, I caught myself 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, pain is present permanently. I could sit in a meeting with friends, a couple for painting or English courses and just sway from side to side, trying to maintain an adequate look. I answered slowly, I could not concentrate on anything and did not understand what to do - after all, the doctor said that everything was fine with me.

The doctor added that it is normal for a woman to endure pain, and she advised to drink some herbs like a "red brush"

In parallel with this, I began to have problems with immunity: 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 became allergic to some of the plasters and left traces like burns. When my stomach didn't hurt, my armpits were cut, and vice versa. Added to this was a constant temperature and antibiotics. The surgeons joked that I needed to bathe in alcohol and change the razor, but it seemed to me that I was in hell. Each time, realizing that it was starting again, I just cried. The immunologist, whom I eventually ended up with, was so impressed by my medical history and my emaciated appearance that, without tests, she prescribed a course of immunomodulation - after that the battle with inflammation was over. Immunity problems subsequently returned, and I took two or three more such courses. These problems are a consequence of adenomyosis: a chronic inflammatory process within the body forces the immune system to work hard.

My parents did not really 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' journey from St. Petersburg. Before that trip, they knew about the pain only from my words in the format “my stomach ached again” - and this was the first time they saw me turn pale, break out in cold sweat, cry quietly and throw myself on pills. Only after that did my family begin to take the problem seriously; when we returned, I went to the doctors whom I had advised to my parents, and from there I got to my surgeon. When I went to the operation, I had three or four mutually exclusive diagnoses from different specialists on my hands. The doctor said that it doesn't matter what is there - you need to remove it.

At the age of 21, I had my first surgery, 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 stomach began to pull again. During a routine examination, the uzist named one of those diagnoses that I had been given before, and I realized that everything had returned. A week or two later, I was operated on again. I joked that this is a unique opportunity to rehabilitate for my boyfriend and friends who did not come to the hospital the first time. After both operations, histologists who examine tissue samples under a microscope wrote that I had leiomyoma (a benign tumor), but 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 me.

Everything was fine with this drug - except that it is very powerful and with a bunch of side effects, and it is usually prescribed for several months. In fact, he introduces the body into an artificial menopause. I drank the medicine for a year and felt great, but because of the risks associated with it, they told me to cancel it. Within a month, I realized that something had changed inside, went for an ultrasound scan and saw new nodes on the screen. It was a couple of months before the defense of the graduation collection. For almost a month I lay at home and cried. I do not remember what pulled me out of that state, I remember that I read 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 clicked in my head, and I looked at the situation from the outside. Then we parted with the young man, I stopped crying and was able to sew a collection and get a diploma.

I worked a lot, arranged some kind of filming, went to German courses, and in general I had no time for doctors. My stomach started to hurt again, I was throwing pills, and one evening, when I was at home alone, the pain suddenly surged in an instant, my legs gave way, and I just rolled down the wall in the corridor. Papa from Komarov arrived faster than the ambulance. I called the doctors at eight o'clock, they took me only at about eleven, saying that most likely it was appendicitis. By midnight I was in the first medical school, where everything is beautiful, like in American TV series about doctors. They put me on a gurney and took me to rescue. Only bad luck - they quickly realized that it was gynecology, not appendicitis, and the gynecological wing was being repaired. As a result, I waited in the emergency room to go to another hospital. Anesthesia was not allowed in order to preserve a picture of symptoms for the following doctors. I thrashed, my teeth chattered, and for the first time in my life I howled in pain. As a result, 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. I went there several times for an appointment, received a federal quota for the operation, and by April I had it. They sent me all the documents and set a date for hospitalization, a few days before departure, I phoned the surgeon's assistant and he clarified the details. I arrived there by night train with all my things, and when I went to the doctor's office in the morning, she said that she was on vacation from tomorrow, and then she was starting to work in another hospital. Anecdote according to Kant: tense expectation, suddenly turned into nothing. She didn't understand what the problem was; her assistant timidly said that I had come from another city, to which she replied that it was not scary, "he will come again." I sobbed in the hallway, not knowing how to react to this. I went to Pushkin, looked at the Cranachs and returned home. I understood that no matter how cool and famous this doctor was, I would not lie down on the operating table with her - I no longer trusted her.

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 not scary, "he will come again"

Gathering my courage, I went to the doctor who performed the first two operations on me. In June 2016, I underwent the third operation, during which it turned out that during the month of my wanderings in hospitals with inflammation of the appendages, these very appendages disappeared. No one will say exactly what happened then, but it was probably 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-fated hospital I was again given a histology report on leiomyoma - and it would not have mattered if it had not tied the doctors' hands in prescribing drugs. I did not have the right to officially prescribe the only drug 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 in my hands, on which was written "adenomyosis node". I'm not sure the lab staff understood why I was so jubilant.

In the entire history of my illness, treatment consisted of three laparoscopic operations and four options for hormonal drugs - I do not consider the attempts of the first doctor to prescribe herbs for me and send me to treat pain to a psychoanalyst. Now I have been taking pills every day for more than two years: the main hormonal drug and additionally others for the prevention of thrombosis. Previously, it seemed that taking pills at the same time every day was difficult, now I'm used to it. A couple of times I forgot and missed a few days - but a strong pain became a reminder, once accompanied by bleeding. I need to regularly do ultrasound and donate blood to check blood clotting and liver parameters. Sometimes I do this without visiting a doctor, because I already know what to look for, and I go to the doctor only in case of any abnormalities. You cannot go to baths, saunas, solariums and the like. It is not recommended to sunbathe at all and ride a bike. In theory, as with any other medicine, I shouldn't drink alcohol - this is the only restriction to which I close my eyes.

Even when I was first diagnosed with uterine fibroids, I was very worried about it. I had a terrible sense of inferiority, I felt broken. It created a wall between me and my friends, because no one was ready to discuss it with me. Parents also did not take this news as something to talk about. Are you not dying? So everything is all right. And when the situation began to escalate, there was no time for discussion. Sometimes I wished I had a "real" illness, something life threatening, where I could fight and win or lose. Because dying is not as shameful as suffering endlessly.

At the very beginning, I shared my problems with the master at the academy, she really supported me then. Then I heard her tell my story to another of our teachers, to which she gave out that I was just sitting on pills and inventing pains for myself. In general, I often heard that I did not look sick and that I was inventing everything - and sometimes I answered that I just knew how to paint well. “If you don’t find a sexual partner and don’t get pregnant in the next six months, you will remain disabled,” this is the phrase after which I cried for the first time in my life in the doctor's office. Even when he was discharged from one hospital, when asked if it was possible to play sports, a male gynecologist said: "Well, go to the gym, maybe you can at least find a man there."

When the same thing is repeated over and over again and it seems that there will be no end to the pain, then the hands drop. There were several periods when there was no strength at all, and 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 give up traditional medicine and go to any healers, fortune tellers, homeopaths - but I went to a psychotherapist. In addition, my work and German language courses helped me to get over what was happening; one and a half to two hours with other people is a good way to disconnect from your life and problems, immerse yourself in another world. This is a real reboot. In this regard, I am a happy person: I was very lucky with my students and their successes give me strength. I am happy for them, as for myself, when they enter where they wanted, win contests or participate in exhibitions.

I have such a long and strange story that I would like to lead to something, but only there is no moral in it. I cannot give one-size-fits-all advice. There may be a doctor anywhere who goes on vacation the day of your surgery. Probably, I would like the girls to be a little more attentive to their health and not start the situation. To believe their feelings more than the words that enduring pain is a woman's lot. So that they are not afraid to change the doctor if something seems suspicious or they simply do not explain anything to you. To support each other and not be afraid to talk about what worries, and know how to be close to those who have difficult times.

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