My Endometriosis Story

My Endometriosis Story

One year ago, I was at the hospital for a surgery to treat my endometriosis. After a 2-hour long procedure, the surgeon said “the pain must have been unbearable”, and added it would not happen again. But ever since the surgery, I have not experienced one month without feeling the same pain I did before.

I initially thought the pain was related to the surgery, and when I saw him again, the surgeon said the first months would be bad but then would get better. Unfortunately, it never did get better.

Every month, I still experience the pain, the lack of energy, and the feeling that something is just not right with my body. I’ve tried exercising more and I’ve tried taking my mind away from the pain. I’ve tried reducing painkillers, but could not stand the pain.

I’ve had endometriosis since my teenage years. At that time, period pain was considered normal and sometimes, it was even seen as a weakness, a “trick of the mind”, a “fake pain”, a “reason to skip sports class” or a motivation to “complain and receive attention”. People would touch my hands and feet turned cold, they would hold me as I was trying to grasp for air, as my whole body was aching and my legs so painful that I could not keep them still. I wanted to bang my head on the wall to make it all stop.

At no moment, gynecologists mentioned this condition could actually be caused by a physical reason. It’s only now that research found that endometriosis is caused by the abnormal growth of endometrioma outside the uterus. There is no cure, and women suffering from this condition are offered the option to undergo surgery or live with the pain.

In my case, I prefer to endure monthly pain rather than a full surgery. However, there are currently no tools that can show how bad an endometriosis condition is without actually opening small “holes” in the patient to find out. Some women lost parts of their organs because no scan could show that they had a severe endometriosis condition. Only when the surgeon performed an endoscopy were they able to understand what was causing their symptoms.

That’s the reason I agreed to undergo the surgery last year. I wanted to know how bad it was, if I would be able to bear children and if any other organs had been affected. Four months after the surgery, more cysts were diagnosed on my ovaries and I was told I would have to go through surgery again to remove them.

The reason I’m sharing this story is because endometriosis affects many women (1 in 10) and I don’t believe any more girl should be told that her period pain is fake or unimportant. It does matter and it is not normal. If you find that having your period changes how you feel in your body, if you experience days and days of bloating, have heavy period flow, find sexual relationships painful or feel very tired at ovulation and period times , these are all symptoms of endometriosis. Sometimes, women only experience some of them, sometimes all of them… If any of these apply to you, please take the time to see a specialist and understand what is happening.

You have a voice that deserves to be respected when you express how you feel.

Taking care of your body is important.

It took me many years to realise that, and I hope you’ll take better of yourself than I used to 😉

With love,

Lily


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