In December 2019, I experienced pain that was unlike anything I had ever felt before. Period pain wasn’t new to me—I had been living with it since I was a teen—but this was on a completely different level. I couldn’t sit, walk, lie down, or even stand comfortably. Every few minutes, I’d find myself running to the bathroom, and nothing seemed to help. It was just before Christmas, and I was home alone, wondering if I should call an ambulance. But what would I say? "I have bad period cramps?" They would just probably laught at me. And on top of all - how should I say it in Hungarian? :)
When my husband came home with painkillers, I finally felt some relief. Maybe it was the medication, or maybe it was just the comfort of knowing someone was there. The next day, I went for a check-up and was told I had a large ovarian cyst that needed surgery.
Fast forward four weeks later , on my 30th birthday (talk about timing!), I was admitted to the hospital. The next day, I underwent surgery. When I woke up, the doctor told me they had removed a cyst "as big as a baby’s head." But then he added, "It wasn’t just a cyst—it’s endometriosis."
As soon as he left the room, I grabbed my phone and typed, Endo... Wait what? What did he say? Endo-what? I had never even heard of the condition. What I found online was overwhelming and confusing. Making me super nervous about my future. This is why, I wanted a clear, simple explanation, and that’s exactly what I’ve tried to create here.
Endo-What? Endometriosis.
Endometriosis is a systemic inflammatory disease where tissue similar to the lining of the uterus (endometrium-like tissue) is found outside the uterus. This tissue can grow on other organs, such as the ovaries, fallopian tubes, bladder, intestines, and even in distant parts of the body.
Unlike the normal uterine lining, this endometrial-like tissue does not shed during the menstrual cycle because it lacks the structural mechanism to do so. However, it can produce its own estrogen and inflammatory substances. These can irritate surrounding tissue, destabilize blood vessels, and cause bleeding, leading to inflammation, scar tissue (adhesions), and cysts known as endometriomas.
Endometriosis is more than just a localized issue—it is a full-body condition and has been found on every organ and bodily system. It affects not just the pelvic area but can also impact overall immune system function.
Why Does Endometriosis Happen?
The exact cause of endometriosis is still unknown, but here’s a simplified breakdown of what might be happening:
Hormones: Endometriosis is an estrogen-dependent disease. Estrogen fuels the growth of endometrial-like tissue outside the uterus.
Immune System Dysfunction: The immune system might fail to recognize and eliminate tissue growing in the wrong place.
Chronic Inflammation: Endometriosis causes a cycle of inflammation, pain, and tissue damage.
Retrograde Menstruation: Menstrual blood flows backwards through the fallopian tubes into the pelvic cavity, carrying uterine cells to abnormal sites.
Genetics: Having a family history of endometriosis may increase your likelihood of developing the condition.
Endometriosis: More Than Just "Bad Periods"
Many people dismiss endometriosis as just painful periods, but it’s so much more than that. Symptoms can range from painful periods to chronic pelvic pain, heavy bleeding, pain during sex, or even infertility.
Endometriosis is also an inflammatory disease that thrives on inflammation. This constant state of swelling can make the nerves in the pelvic area hypersensitive, amplifying the pain. It’s like a cycle—misplaced tissue causes inflammation, which causes pain, which causes more inflammation.
Adding to the complexity, endometriosis is linked to the immune system. Some researchers suggest the immune system might not recognise the tissue as a problem, allowing it to grow unchecked. Others believe the immune system overreacts, releasing chemicals that cause even more pain and damage.
Talking About Timing
Looking back, I can’t help but laugh (just a little) at the timing of it all. To find out I had a chronic condition like endometriosis just after turning 30 felt like the universe was playing a prank on me. But at the same time, it was the wake-up call I needed to start taking my health seriously.
A Simple Explanation
If you’re feeling overwhelmed, here’s the simplified version of endometriosis:
- What it is: A condition where tissue similar to the uterine lining grows outside the uterus.
- What it does: This tissue bleeds and becomes trapped, causing inflammation, pain, and scar tissue.
- Why it matters: It’s not just about painful periods—it’s a chronic condition that can affect your entire life.
At EndoFit, I aim to simplify the science, share my story, and provide a supportive space for anyone navigating this journey. Remember: You’re not alone, and help is available. Together, we can break the silence around endometriosis and create a world where no one feels unheard. 💛
Additional. I highly recommend below book: Endometriosis: La guía para entender qué es y cómo cuidart. Primarily available in Spanish. The title translates to Endometriosis: The Guide to Understanding What It Is and How to Take Care of Yourself. Currently, there is no widely available English edition of this book. However, there is a German and Hungarian translation available (Endometriózis – Minden, amit a tünetekről, a diagnózisról és a gyógyításról tudni érdemes).
References and links for more detailed infromations:
Cleveland Clinic. (n.d.). Endometriosis.
Yale Medicine. (n.d.). Endometriosis.
ScienceDirect. (2023). Endometriosis: A chronic inflammatory and immune system disease.
Instituto Bernabeu. (n.d.). Endometriosis: Why does our immune system let it slip through?.
National Center for Biotechnology Information. (2011). Endometriosis and the immune system.
National Center for Biotechnology Information. (2022). Inflammation in endometriosis.
Carmona, Francisco. Endometriosis. Penguin Random House Grupo Editorial. 2021.
Shafrir, A. L., Farland, L. V., Shah, D. K., Harris, H. R., Kvaskoff, M., Missmer, S. A. “Risk for and Consequences of Endometriosis: A Critical Epidemiologic Review.” Best Practice & Research: Clinical Obstetrics & Gynaecology, August 2018.
Guo, S. W. “Recurrence of Endometriosis and Its Control.” Human Reproduction Update, July-August 2009.
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