“I was convinced that something is wrong with my body, but when you hear from so many doctors that it’s all in your head, you just sort of give up and start thinking, but what if it is in my head?…”
This is Ivana's story.
“You are just stressed”, “Don’t worry, you don’t have cancer, it’s nothing dangerous”, “Oh, the pain is giving you anxiety, well maybe you should go to a therapist. The pain can’t give you anxiety, it’s all in your head”
These are just some of the things I’ve heard since my endo pain got worse, and I was still looking for the answer to my pain. But let me revise the story a bit to my teenage years.
In my teenage years, I did not feel like anything was wrong during my menstrual cycle. I mean, yes, I did have really painful periods, to the point that I would be laying on the bathroom floor and dying from the pain. But I would not really go to the ER or doctors about it because I was.. Ashamed. Where I am from, it’s not really common to speak about intimate things.
When I wasn’t dying on the bathroom floor from the period pain, my life was normal for the most part. I got used to feeling 1000/10 pain during my periods…
When I asked GPs, gynaecologists, they all told me that the pain is normal. I went to this gynaecologist privately (which you would think is a good thing as they usually know better (at least in my case as I’m from Croatia)), she still convinced me that the pain is normal, and to just drink painkillers a week before the period starts.
Usually the first 2 days were the worst, but I could get through them. Later on, I noticed another thing which wasn’t “normal” either. And that was having painful sexual intercourses. I never mentioned it to anyone as who does that when they’re a teenager.
At 19 I started feeling worse. In a sense that the pain wasn’t just during periods, but it became constant. I started having pain when going to the bathroom. I started feeling the pain, similar to the period cramps, everyday. I tried going to university but soon gave up as the pain was just too much to bear.
This was 3 years ago. I have gone to so many gastroenterologists, and different kinds of specialists, but no one helped. They all said it’s stress from uni, that it’s in my head, and there’s nothing wrong with me as all my medical exams are normal.
I was convinced that something is wrong in my body, but when you hear from so many doctors that it’s all in your head, you just sort of give up and start thinking, but what if it is in my head?…
Therefore, I went to a psychologist for 1.5 years. From March 2023 to June 2024. She was trying to convince me that it’s in my head too.. I mean it must be because I was troubled since my teens. I went through a lot, which must mean that now I’m trying to hurt myself unconsciously…Why?
I didn’t think so.. Why would I start hurting myself unconsciously right when I started being happy?
So.. I left. I am not going to her anymore. And once again, I’m still in pain everyday, not knowing what to do next…
I came from Croatia to Italy in the hope that Italian doctors would be more helpful.. Which was true and not so true.
The first GP that I had, he was a trouble, he did not listen, didn’t want to give more tests, and screamed at my husband to not be a bother because there’s nothing wrong with me.
A little time passed, and my husband’s colleague mentioned she has endometriosis. She had the same symptoms as me during her menstrual cycle. And this is the first grain of hope I got.. Finally, maybe its this.
I went to the G P and he was okay, go to the endometriosis specialist. And so I went… And got diagnosed with endometriosis and adenomyosis in November of 2024.
That GP then proceeded to tell me that endometriosis is just like that, there’s no cure, and people can live with endometriosis. His wife had it.. But he still didn’t care.. I feel sorry for his wife.
He did not want to give me more tests, so I went to another GP. This GP was convinced that it’s in my head as well and she told me that since I’m on a contraceptive, that endometriosis just goes away so there’s nothing to worry about. And that I should just drink more water, and go for walks until I sweat. I guess to sweat the endometriosis out or something? lol
This GP was of no use, she didn’t trust me, didn’t seem like she knew anything about how bodies work, and it was time to move on.
Which brings me to my new GP. She looks like she listens and wants to help. She reads through all my papers… and there’s a lot. I’m currently in the process of taking medically induced menopause, and I’ll be getting the laparoscopy in September 2025. I’m really anxious about it, as I never had surgeries.
But I’m trying to look at the bright side and try to have my head up in believing that this surgery might help my daily pain.. But at the end of the day after reading so many stories of women who the surgery didn’t help still leaves me helpless.
I feel alone in this, I have always felt alone in my pain. I don’t know anyone in real life with this pain… because I bet they don’t know that they have it either.
I want to help those women, to not feel helpless as I felt. I want to create a platform where all women with endometriosis and associated diagnoses such as adeno, fibromyalgia, POTS, PCOS, have a Safe Space to learn about their condition, check the most recent research on it, and in the future, I would like this platform to become something bigger…
The voice for all endometriosis girlies.
The voice that will push for endometriosis research, the voice that will help other women understand their symptoms, and potentially help us in finding things that make the endo symptoms at least a tiny percent better.
That’s why I started Endometriosis Sisters.
And the credit is not all on me, the credit is on all the team members who made this project possible, and are doing whatever they can to spread awareness on Endometriosis.
