My name is Gwen, I am 32 years old and have been living with endometriosis for the past 10 years.
Right from when I was a teenager, my period has always been a nightmare. Ever since I started having periods, they have been heavy and very painful. I also suffer with many PMS (premenstrual symptoms). At the age of 12, I was put on the pill to reduce my pain.
10 years later, in 2012, I started fainting on a regular basis du to unbearable cramps. After several tests, I was diagnosed with a sexually transmitted infection with a high chance of infertility. An operation was then planned to check there was nothing else wrong.
Right after the operation, the diagnosis was made: I had endometriosis. The disease was not known at all at that time, the surgeon had called a colleague during the operation to understand what was going on. She made a quick drawing to explain it to me and let me go, advising me to see a gynecologist once a year. The gynecologist put me on a regular pill and gave me an appointment for a year from now. I would not have the opportunity to go to this appointment, a few months later, I ended up in the ER again.
New operation, this time because of cysts developed since the previous operation. The follow-up this time was more thorough with control appointments every 6 months, a change of pill to put my body on pause and regular exams. At the beginning, when I say that I have endometriosis, people look at me without knowing what I am talking about, the disease is unknown to the public. The medical profession knows the name and treats me as if they had just told me that I had 6 months to live. …. This empathy puts me in front of the disease, I thought I was going to live a normal life, but they treat me like a “sick person” or like a “weak person” who is in pain because of her periods. Or as a crazy person who is told that the pain is in the head.
The years that followed were filled with pain, depression and fatigue. I am in my twenties and I am unable to live like the young people of my age, I am stuck in a body that hurts me, that is failing. I started to hate my body, it was like a ball and chain that I had to carry around. I was totally depressed and blamed the disease for ruining my life. I am in a body/mind duel. My mind wants to do lots of things and enjoy life but I am stuck in a body that hurts and suffers from the disease.
I then moved abroad and discovered that endometriosis is considered a fairly common disease and is rather trivialized. Unfortunately, my pain was not heard by my doctor and I had no gynecological follow-up for 5 years. I feel totally abandoned by medicine and left to my own devices.
I then started to look for information on the right and left and discovered that all the pain was related to endometriosis. Yes, it had never been explained to me that endometriosis could cause pain other than in the ovaries. It wasn’t just the stabbing in my belly, my whole body was inflamed and it was related to the disease. Even though I had been diagnosed with the disease, the management and education about the disease and its impacts had been non-existent.
I began to listen to my body more and work with it. I eliminated gluten, coffee/tea and meat from my diet. Oh joy, the pain subsided. I do my tests, add and ban foods in stages and observe my body’s reactions. I continue my research and hear about AI nutrition. My vision of the disease starts to change… I start to learn to live with endometriosis and slowly I stop being at war with this sick body. At the same time, I am doing meditation, low impact sports. In short, I listen to my body and we slowly start to make friends. I let it rest when it needs to without feeling guilty for being tired again and I stop attacking it with inflammatory foods.
I have been planning to have a baby for several years now and I was afraid that the pain would return when I stopped taking the pill. I continued my exploration of alternative medicine, I tried hydrotherapy which was a real rebirth, a cleansing and a calming of the digestive inflamations. The hot water bottle remains my best friend during my period, but I only suffer ¾ days a month whereas before it was every day non stop. Today, on the advice of traditional medicine, we are turning to MAP for our baby project, but in parallel I am starting a coaching on fertility with a nathuropate. Always with a desire to better understand my body and to take it in hand instead of undergoing it as I did for years. Today, I am learning to observe my cycle and its different phases and I am discovering a new world that gives me tools to better understand my fertility.
The illness has taught me to listen to myself and to learn how to live better with my body. Today my mind is at ease, as are my pains.