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My Story

My name is Tamar, and I have a PhD in theoretical chemistry.

Four years ago, I moved from Tel Aviv to New York, to work as a postdoc researcher at NYU.

About three years ago I got ill with Influenza, following by few other viruses from which I had a hard time recovering. My immune system was defined as "recovering", which is probably true, since I live without a spleen (sounds funny, but real).

The doctors said it takes time to recover, and they were right, it took time to recover.

But at the same time, I felt something was wrong.

I started having incessant pain for weeks, stopped eating, lost weight, terrible feeling of nausea, fatigue became unbearable. On my bad days I reached to zero function, and on good days I reached to six hours of function a day.

Still, all doctors claimed - you're just recovering. Rest and this will pass.

I did a lot of testing.

They thought I have Crohn's and asthma. They Called it chronic fatigue, irritable bowel syndrome ... and again “a slow recovery of the immune system”.

The sentences I received were:

"You work too hard ... it's the cause of your chronic fatigue ..."

"We see signs of inflammation, but we cannot find it, so it's probably arbitrary."

"You had a bad reaction to antibiotics"

I felt like a crazy person. Fighting doctors to prove something was wrong with me.

One day I realized that the symptoms come hand in hand with menstruation, mood swings and abdominal pain. I turned to Google, where I came across the term Endometriosis for the first time in my life, at the age of 35.

I started reading about Endo’, and felt like someone wrote my life story.

I found the number 1 doctor in New York, and made an appointment for the day after.

Within two minutes of a gynecological examination and an hour of medical history briefing, the doctor said: “you have Endo’. Severe endo. You have intestinal inflammation. For years”.

Out of shocked I argued with him – I don’t have intestinal inflammation, I have IBS.

But he answered - no. He explained that until today, doctors examined the inside of my intestine, but the inflammation is found in the walls of the intestine.

And most explicitly – Until today, doctors were looking inside the box, but the problem is outside of the box.

Since the age of 14 I have been anxious about getting my period.

Since the age of 20 I have been diagnosed with irritable bowel syndrome (IBS).

At the age of 34 I was diagnosed with chronic fatigue.

At the age of 36 I had my first surgery for Endometriosis.

At the age of 36, I realized I am not crazy. I have an Endometriosis.

At the age of 36, I learned I should only listen to myself, to trust only myself.

I am neither an MD nor a biologist, but I am a researcher. All my life I have learned how to study and explore.

In the two years I was ill, I used all the tools I acquired during my years at the academy to try and explore myself and to find out what makes me so ill.

In the midst of all this, I developed a tool that eventually helped me diagnose myself with endometriosis and to understand what are the symptoms that are related to this disease.

Today, this tool helps me manage my daily life within this disease.

Monitoring the symptoms helps me and my doctors to understand which symptom is affected by which hormonal change, and which symptom appears at which stage of the month. Understanding these factors helps giving me a targeted and correct treatment to each symptom.

Today, a year after my first surgery for Endometriosis, I’m still recovering, still learning how to cope with the disease.

The tool I developed does not relieve the pain, nor does it cure the endo, but it does help me regain control over my life, rather than the disease will control me. I learned to predict when the good or days are coming, and to plan my schedule and work assignments accordingly.

This tool had taught me how to talk to my doctors, how to present them with the development of the symptoms and the disease, and how to get the right and proper treatment for each problem.

After much thought, I decided to try and develop the tool so that it could help other endo’ worriers.

Today we are at a stage where we are looking for Endo’ patients to take part in the research.

For you, the Endo’ patients, it mostly requires a daily documenting of how you feel.

I hope that from this information we will be able to develop an app’ that will help all Endo’ warriors. Most importantly, I hope we will be able to help every Endo’ patient who will take part in this project to gain back control on her life, by understanding better the progress and symptoms of her Endo’.

If you want to take part in this project, please send us your details, and we will reach out to you.

Best Regards,

Dr. Tamar Zelovich


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