Introducing myself

My endometriosis story

On 17 November 2009 my son Beni was born. It was a perfect, natural, uncomplicated birth, after which we returned home healthy and happy. Just a week later, after a breastfeeding session, I suddenly started to bleed. An ambulance took me to hospital where I needed immediate surgery, the diagnosis was "tissue fragments left inside me". The postpartum bleeding was much longer and heavier than normal, so I was given anti-bleeding medication, uterine astringent drops and hormone injections, and for haemophilia tests were sent. Haemeatology results were negative in all cases, even after multiple repeats.

Managed by suspected uterine inflammationl,chronic pelvic inflammatory disease, with lots of antibiotics, without success. Despite exclusive breastfeeding, my period came almost immediately after the cot bleeding stopped, with incredible strength and cramping pains. As no treatment (anti-haemorrhoids, oxytocin injections, infusions, Ergam drops, etc.) had stopped the bleeding and my blood count was deteriorating rapidly, another operation after two weeks put an end to the abnormal bleeding. This was repeated month after month, with increasingly severe pain. On medical advice, we then started hormonal contraceptive treatment, which improved the situation for a month or two, but then I suffered from the side effects of severe headaches. In the 3rd month, I started bleeding again three days after my period, and from then on it was practically continuous.

At first the doctors didn't take my problem seriously, which made my life miserable, but it didn't have a major negative impact on my blood count this time, so they just switched hormones, saying one of them would work. It didn't work. I started researching, reading up on scientific forums that I could only access through my work, and after studying the publications, the picture began to clear: abnormal bleeding, chronic abdominal pain, fatigue, painful sex...ENDOMETRIOSIS! I visited a specialist who recommended laparoscopic surgery and later a hysteroscopyUnfortunately, despite the removal of the visible endometriosis islands, the disease returned again and again despite hormonal treatments and several surgeries.

I have sought alternative therapies, macrobiotic diet, Arwen exercises, bioresonance treatments, Vietnamese thread grafting, homeopathy, all to no avail. I lost both physical and mental strength. I had to get help, which affected my whole family in terms of work, finances and friendships. In desperation, the doctors suggested a solution that would make me infertile for years, but guaranteed to reduce the amount of bleeding: they burned the lining of my uterus. Incredibly, the bleeding never stopped for a single day.

I lost a lot of weight, I was weak, my blood count was getting worse, despite iron, anti-aging drugs and such and such expensive promising but not doing anything. One night, I had such severe cramps that we went to the emergency room, where I was given intravenous painkillers, which they already knew well. They also did a routine blood test to see if I needed anything. I was examined, and as soon as they touched me, I started to bleed in jets. I was told that the transfusion was useless, my body had held up so far, I was in such a state that I needed immediate major life-saving surgery. There was nothing I could do, my then one-year-old son was waiting for me at home. I was also told that the surgery would only get rid of the bleeding, that endometriosis was still endometriosis as long as the ovaries were in place and working, so the endometriosis could return at any time.

No sooner had I recovered from major surgery than I woke up one morning with an unmanageable headache. The next day, after an emergency cranial MRI scan, it turned out that I had developed a sinus thrombosis as a result of all the hormone treatment, the many operations and the lying down, and during the treatment I was almost miraculously conscious, able to see, hear and communicate. That was the last straw.

I knew I had to find my own way out of this situation. I knew I didn't want to have my ovaries removed, and I also knew I didn't want to put my life at risk, I didn't want to be a guinea pig exposed to hormones any more. I could no longer accept medical treatments because of my condition. No more surgery, no more hormone drugs.

Then, at the time, lying on a hospital bed after 5 e.r. scrapes, 3 laparoscopies, 1 major surgery and a consequential brain thrombosis, experiencing probably the lowest of all, the deepest of all, I made a decision. I realised that no one but me could solve the situation I was in. I remember I got up from the bed with great difficulty, walked to the window, looked out... the sun was shining, the birds were chirping. The sun was warming my face through the dirty windowpanes. There and then I made a decision: I would wait for no more. No more surgery, no more medicine, no more illness. I will manage on my own. There I stood, frail, pale, gaunt, one arm clutching my IV bag awkwardly, a pitiful sight. But inside, for the first time, I felt a strength I'd never felt before. At first I just whispered, then I shouted to the sparrow on the other side of the bottle: that's enough, it's over! I will be cured. And so I did.

I celebrate two birthdays every year. One, in September, is the day I was born, but there is another...the day I decided to get well. It is the day of my rebirth. I stick to the March celebrations because I vowed that even if my memories of my illness began to fade, there would be one day each year that would always remind me of what I had experienced and learned. That's why it's a particularly special holiday for me, even if I'm getting older every year:-)

I was determined to be the young, healthy woman I was again and NOT GIVE ENDOMETRIOSIS THE OPPORTUNITY to ruin my new life, which I saw as a second chance. Since then I have taken great care of myself both physically and mentally.I have developed a lifestyle and outlook on life that has required great change and hard work, but I can say with confidence that it has been worth it. Slowly and gradually the symptoms have gone, I've been fine for a long time, and now I only go to the gynaecologist once a year for my annual cancer screening. Each yearly check-up confirms again and again the disappearance of the remaining endometriosis nodules, every year my doctor and I have a tinkle, because we both remember that it wasn't always like this... but I wish that this feeling of going to the gynaecologist without fear, of being happy, of tinkling, could be experienced by everyone.

With commitment, passion and drive for my profession, I now stand alongside thousands of women as a helper so that no one ever has to go through this alone again, and everyone who is affected and in the thick of it knows: there is a way out, it will get better, and everything can be done!

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You are welcome!

Nóra Árvai

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