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As the doctor examined me, he grew more and more nervous. «How did it happen that none of the doctors noticed what was in your belly? Why has no one helped you before »- recalls Agnieszka. For several years, the woman lived with inadequately treated endometriosis. What does everyday life look like with a disease that is said to be like from hell? She told Medonet about it.
- Agnieszka suffers from the so-called deeply infiltrating endometriosis. “It’s like having a spider in your belly that creates a web on each organ and binds them all together”
- A woman with symptoms of endometriosis: pain does not appear only during her period. I also feel it before and after my period. But I never really know for sure when it will appear. It’s like living on a bomb
- Only surgery can change the situation. “I have no choice. I am terrified but resolved. I believe it will be OK”
- Agnieszka: I do not wish any woman to experience endometriosis and the pain it brings. I am asking the women who live with her not to give up, to seek support wherever possible »
Monika Mikołajska listened to it. The text was published in Medonet in February 2021.
Endometriosis is like a silent cancer. It’s a disease from hell
Every time my period approaches, I fear what will happen. And these are days and nights spent in bed and toilet alternately. These are repeated hot flashes, nausea, diarrhea. Worst of all, however, is the enormous pain radiating to the pelvis and to the spine. Then I am paralyzed – from my knees to my chest. There is no way to straighten up and walk normally. There is no way you can go without painkillers. They do not always help, and then you have to go to the emergency room for a drip.
This pain doesn’t just happen during your period. I also feel it before and after my period. But I never really know for sure when it will appear. It’s like living on a bomb. And endometriosis itself is like a silent cancer that attacks the body. It is not for nothing that she is said to be a disease from hell.
Endometriosis (endometrium) is a disease that causes growth of the lining of the womb (endometrium) outside the womb. This tissue grows during the cycle and bleeds during your period. Bleeding causes pain, inflammation, and wounds that heal and lead to the formation of adhesions.
Young women of childbearing age most often suffer from endometriosis, most often thin, with heavy and painful menstrual bleeding. Depending on the source, 40 – 80 percent. women with infertility suffer from endometriosis.
Endometriosis accompanies me from the first menstruation, from the first day. But at the time, I had no idea about it. I thought it was supposed to be this way, that was how it was supposed to hurt. I didn’t pay much attention to it. I didn’t realize how sick I was. The pains, however, grew stronger.
The doctor I saw couldn’t tell why my periods were so painful. Some of the gynecologists suggested that I have cystitis (because I often urinate with these pains) and treated with antibiotics (which they prescribed even without urine testing).
The breakthrough came three years ago, when my husband and I started trying for a baby. However, she was still not pregnant. In the hospital, I was examined and it was then that my first suspicion was endometriosis. However, the doctors did not know how advanced the disease was, they did not notice any lumps … I was recommended a hormonal treatment to soothe my menstruation. I was also referred to a doctor dealing with the treatment of endometriosis and infertility.
The first examination already confirmed the earlier diagnosis: I have endometriosis. I started a four-month hormone treatment (by injection). After that, I heard from the doctor that I was healthy and that I should report myself when I was pregnant. This, however, still did not take place, but the pains came back, very strong.
My doctor said surgery was needed. So a laparoscopic procedure was performed and one cyst was removed. That’s all I learned about it. I was still supposed to visit my gynecologist.
Impatient with all this, I started looking for help myself. I found a clinic in Wrocław.
Deeply infiltrating endometriosis. «Why has no one ever helped you before?»
During the visit, a gynecological examination was performed with the use of a speculum, then I had an ultrasound. As the doctor examined me, he grew more and more nervous. Afterwards, he asked: has anyone ever performed a speculum test for you? I replied that of course, yes. It was like that at every gynecological examination. “So how did it happen that none of the doctors noticed the huge tumor, the ovaries so badly changed, all that you have in your stomach?” Why hasn’t anyone helped you before? He asked irritated. Unfortunately, I don’t know the answer to this question. However, I realized that during all these years no one treated me properly. And yet I have been to so many doctors …
After visiting the clinic in Wrocław, I finally knew where I was standing. However, it was not good news. The magnetic resonance imaging that I was commissioned for endometriosis showed that there was a giant tumor on the intestines that narrowed their lumen by 50%. (it was already visible during the examination with a speculum). The ovaries and fallopian tubes are largely occupied by endometrial foci, there is a lot of adhesions – with the intestines, with the uterus … The disease made my organs stuck together. This is called deeply infiltrating endometriosis.
Recently, my husband explained it in a very vivid way: “it is as if you had a spider in your belly, which creates a net on each organ and binds them all together”. Only surgery could change the situation.
There is also a smile of fate in all of this. I heard from the doctor that if I had not been properly diagnosed and had waited for the procedure, I would have had a stoma for the rest of my life. It is possible that there would also be neoplastic changes. I would also have to remain “in a state of hormone induced menopause” the entire time. And yet I’m young, I’m 28 years old. It would be a very difficult experience.
During the follow-up visit, the doctor drew a picture of what was happening in my abdomen, how the lesions were located, what their size was. Thanks to this, I understood what the operation was about, but also how much risk it involves. This is evidenced by the fact that over a dozen specialists take part in it.
Endometriosis surgery. «I am terrified but determined. I believe it will be OK”
My doctor said bluntly: first you need to think about your life, then about your health, and finally about your baby, if it is possible. It simply meant that my life was in danger due to years of neglect. The operation, although very serious, is a necessity for me. The deadline is set for August. During the procedure, doctors will try to remove the tumor on the intestine along with the vagina and uterus. The goal is also to get rid of the formed adhesions, and there are a lot of these. Unfortunately, I have to cover the entire costs myself (as well as all previous visits, medications, tests). This is the amount of approx. PLN 80 thousand. zlotys. This money is almost like building a house.
If the operation is not performed, it will come to the point that the intestines will cease to function normally and I will have to function with a stoma for the rest of my life. There will also be very, very painful periods, which may end up in a hospital emergency department and a drip. There may also be a situation where the uterus, ovaries and fallopian tubes will need to be removed – there will be nothing left. That’s why I have no choice. I am terrified but resolved. I believe it will be OK.
In the whole situation I realized that the gynecologist deals with so many things – he gives births, performs caesarean sections, heals “female” ailments. I lacked a doctor who would deal strictly with the treatment of endometriosis. I went to the gynecologists in the hope that they would help me, but when they heard that my periods were so painful, they didn’t know what to say. “Such is your beauty” or “It’s best if you get pregnant” – I heard sometimes. None of them consulted my case with other doctors. I can’t understand why. Everything was happening in the dark. Only the doctors from Wrocław knew what point to hit to really start treating this disease and give me hope for a better tomorrow.
Endometriosis is a very serious disease. I do not wish any woman to experience her and the pain it brings. I ask the women who live with her not to give up, to seek support wherever possible and not to be left alone with her. I would also like doctors to show greater sensitivity and understanding towards patients.