Living with endometriosis is a pain nightmare. «I thought I was dying as if someone were tearing my stomach open» [LETTER TO THE EDITOR]

I found myself in the hospital when I had my period for the second time in my life. I was 12 at the time. The pain was excruciating and the nurses threatened with an enema. It was the beginning. And although I am from a new generation of patients with endometriosis, the doctor did not explain anything the first time I was examined. Another commented “with such breasts I could appear in films” – writes Aleksandra Bielak from the council of the Defeat Endometriosis Foundation.

1. Endometriosis is a chronic hormonal and immune disease, and the endometrium is the tissue that lines the uterus
2.  Endometrial cells are implanted outside the uterine cavity, not only in the ovaries and fallopian tubes, but also in e.g. in the intestines, ureters, liver, lungs and brain.
3. The disease is very painful. Periods can be irregular, with clots
4. About 180 million women worldwide suffer from this disease, which means that every tenth woman has it. Recent studies are even less optimistic – every fifth woman lives with her
5. «I am from the new generation. The one where endometriosis affects younger and younger girls. She has touched it before – there is just more talk about it now. Or maybe there are more and more of us? » – wrote Ola in a letter to the Medonet editorial office
6. More information can be found on the Onet homepage.

I am from a new generation of sick people

I am from a new generation of endometriosis patients. The one who has everything under his nose – access to several specialists in the country, a selection of reimbursed drugs. Only expensive operations.

At the same time, I am from a small village. The one where the nearest gynecologist is in the poviat town, and you have to go to a good doctor to go to the voivodeship town. Where pain is given to God and lived with dignity.

I don’t know if I still believe in God.

The letter continues below the video.

I am from a new generation. The one where endometriosis affects younger and younger girls. She has touched it before – there is just more talk about it now. Or maybe there are more and more of us?

With the second menstruation I came to the Emergency Room

I remember my first period, it was completely painless. I was 12, fifth grade in elementary school. A year earlier, my mother had warned me that if I see blood on my pants, I should report to her or my grandmother. I was given a sanitary napkin and a manual, the panties were washed. It wasn’t that bad.

It started a month later. I felt such a sharp pain on the right side of my abdomen, with vomiting, that my parents immediately packed me into the car and drove me to the Emergency Room.

“It’s not an appendix, but a sharp abdomen, we open it” – it was said in pediatric surgery.

When I woke up after surgery, I thought I was dying. As if someone was tearing my underbelly. I could only lie on my side. Nurses scared me with an enema if I don’t calm down.

What was wrong with me? A ruptured ovarian cyst. Some fluid in the abdomen. When a few days later I was discharged from the hospital, I was recommended to have regular check-ups by a gynecologist.

A prescription for pain

Then I quickly learned that the excruciating pain I felt after the surgery was a prelude. It hurt every month. More and more over time. The pain began to “travel” to my back. It was normal for the gynecologists, whom we were supposed to visit regularly. “When she gets older she will go overboard” – “But what to do?” My mother asked. – «Pain Relief».

And the painkillers were. First over-the-counter, and then my health was on a prescription from my family doctor.

Preparing for a visit to the doctor – like a war

The first gynecologist (“child”) did not explain that the examination consisted of “undress and stick my fingers up your ass”.

Another gynecologist was better – he did a transcollic ultrasound and showed that I was fine. As well as completely ignoring what I was saying.

Another, when he gave me a breast ultrasound before prescribing birth control (I was 18, so I decided to take hormones) commented that “I could appear in films with such breasts”.

Years later, in therapy, I heard: “Ms Ola, why do you prepare for each visit to the doctor as if you were going to war?”.

The constant thing was that I had to lie down at least two days a month. Fortunately, it was usually the weekend. Teachers and friends only sometimes noticed that I was lying on the bench in the classroom. They helped, but couldn’t do more. As if there were universal truths of the world “the sun goes down in the evening”, “gravity holds us to the ground”, “Olka always hurts something, usually her stomach”.

A coincidence saved me – between fatigue and pain, I signed up for a routine check-up at the gynecologist. The first time I was heard was talking about painful menstruation. And for the first time something showed up on an ultrasound.

Endometrial cysts on both ovaries. It was the first time I heard ‘endometriosis’. I was referred for surgery. “Thank you,” I said. – «Don’t thank me. I’m very sorry”.

I was able to get quite a quick appointment for an operation in a state hospital, surgical gynecology. Only women with endometrial cysts were lying in the room with me. Apparently, “us” was the most in the ward.

I remember a few situations from the hospital.

When I woke up from anesthesia, I begged the surprised anesthesiologist for a sanitary napkin, because I thought I was about to have my periods – the pain was so similar, it started like this, it hurt the same before it even started. It was hard to walk then, but you can talk and breathe.

The next day, during the check-up ultrasound, the gynecologist who operated on me asked, “You have advanced endometriosis. Did you not see a doctor? ». I remember his face when I explained that I was walking and since when.

On the day I was due to hand over my thesis, I was lying in a hospital bed. Maybe I’ll defend myself one day, I don’t know.

I was discharged from the hospital without a cyst. Diagnosis of “ovarian ectopic endometriosis”.

A month later, the cysts were back. Referral for another operation, in another hospital, prescription of contraception, which I did not feel any difference.

The pandemic has started, the date of the surgery? “We don’t know, maybe on vacation”.

I waited more than half a year to hear that “we will open it, we will smoke it, if we find something on the intestines, we will close it, we will open it again”. Back then, I was aware of the difference between excision and ablation, and I was terrified at the prospect of several operations in a row. I gave up, decided that I would rather pay for the operation.

Somehow during this period I got to know the foundation, I felt well enough to look for information about endometriosis. I got to a specialist in Warsaw. I have new drugs, dienogest. I can say that I am lucky – they work, and this is not so sure.

When the endometriosis specialist explained to me for the first time what the test would be and apologized that, unfortunately, it must hurt, I wanted to cry with happiness. There was no resentment “please do not fidget”, was not surprised “it hurts you so much?”. On sonovaginography, I thanked the doctor who performed it that she could understand. “I lost my ovary because of endometriosis,” she said.

I once heard that recovery can take as long as the disease itself. I agree a bit, I am repairing in small steps what was destroyed prior to the diagnosis. Vitamin and mineral deficiencies, insulin resistance – one thing after another. Then there are night trips to the SOR for the “ketonal hundred”. But I have a feeling that I am taken care of.

We encourage you to listen to the latest episode of the RESET podcast. This time our guest is Marek Rybiec – businessman, as one of 78 people from all over the world, he completed «4 Deserts» – ultramarathon taking place in extreme places around the world. She talks to Aleksandra Brzozowska about the challenge, mental strength and mindfulness training. Listen!