"Endometriosis - what is it?" - I heard numerous times this question. I tried to give an exact, precise definition associated with my experience and symptoms too. I don't know if I was understood or not. On March, the International Endometriosis Month, on one of the Facebook groups I am in, I came across a beautiful letter/definition of endometriosis written by one of the patients, Sonia Aguirre.
I read it and felt it in my heart, my bones, my whole body. I asked for her permission to publish her "letter" in English and in Romanian here, on my website. The original was written in Spanish. I hope you will have 2-3 minutes to read it. It's the life of a patient with endometriosis in such few words. It's our truth. If you are a patient and resonate with it, you can share it to your family, friends and even doctors. I think it would be so important doctors to read it too.
At the end of it, I also wrote several extra things, the things that pop into my mind after reading it.
Endometriosis - what is it?
"Imagine that you are a woman.
Your first period comes and you feel happy, you're already a big girl now! Your period and with it a lot of pains start and everyone tells you it's normal, that you should take a tea or a pill and it's gone. You hear that even on TV and commercials.
The years go by and you get more pain, sometimes you can't go to work or school. "Take a pill, don't exaggerate." - you keep on hearing.
Your life begins to change, you avoid going out on "those days", you can't wear your favorite clothes as an accident can happen at any time. Sleeping is just as awkward, and there comes a time when you have to wear an adult diaper because the bleeding is tremendous.
Of course you are still in pain every month.
You see different doctors and they tell you it's normal. Sometimes you get diagnosed with colitis... "Of course, stress gets you like this and that's why you're so swollen."
Suddenly the pain is already unbearable, you can't walk upright because of the pain, but sitting still hurts too.
It no longer only hurts on your period, it hurts almost the whole month. Stomach, back, lombar area, sometimes legs.
And of course fatigue is your eternal companion. You have constipation or diarrhea. Constant urinary tract "infections".
There's not a single day without pain...
After many years you finally find a doctor who knows, understand and believes all your symptoms.
And he tells you pain is NOT normal. Menstruation should NOT hurt. You are not lazy. You're not crazy. You're not an exaggeration. It wasn't normal what you felt like that for years.
You have endometriosis, an incurable disease, that will accompany you for the rest of your days affecting all the organs that comes in its path. Bladder, intestine, lungs... even the brain.
And by the way, not any gynecologist knows how to diagnose, treat and much less operate it. You're kind of your own now.
This is the letter Sonia wrote. It sums it all. Of course, many people, doctors included, will say "it is exaggerated". It is not. It's the truth. Of course, some patients could handle all this better due to money, luck, diet, an experimented doctor etc. etc. but still this is the life of an endometriosis patient.
"You're kind of your own now" was my addition to the story. Why? Because even after you are being diagnosed, you could only rely on yourself. Of course it is not the ideal, but doctors who are experts in endometriosis are so few, many of us do not tolerate birth control pills (that do not treat, but they mask more the symptoms and try to hold on endometriosis). Surgeries, excision surgeries (so, so important in endometriosis) have enormous prices so we have to take credits, to stand by our lives just to be well. For a time.
Each one creates her own healing path. Mine was excision surgery, regular medical check ups, diet, supplements, faith, prayer. It is not a 100% sure path, but it is best for me.
If you are a patient, I advice you to find your own path and to extract from the above words your power. Endometriosis patients are extremely strong. They go on, they find solution even where no one believes them. It doesn't matter, let us go on and some day maybe our daughters and nieces will be heard, helped and treated accordingly. (including payment help with all that expensive excision surgery).
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