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Raise Awareness: 'I have endometriosis.'

Updated: Jun 23, 2021



Today, I would like to write about a personal topic. A disease I suffer from: endometriosis.

Maybe some of you already heard about it? Or maybe you are, or you know someone who has it? If you are a man, you may never heard about it, or maybe you know a woman who has this disease… If so, thank you for trying to know more about it!


Here is the definition of Endometriosis:

‘Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

With endometriosis, the endometrial-like tissue acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.

Endometriosis can cause pain — sometimes severe — especially during menstrual periods. Fertility problems also may develop.’


It may be difficult to understand written this way. To make it clear, it is a disease that causes huge pain and other symptoms according to the person. Endometriosis depends from a woman to another. Some are in more pain than others. Endometriosis can prevent some women to get pregnant.


HOW DID I FIND OUT I HAVE THIS DISEASE?

When I was younger, I never had any problem with menstruations. However, two years ago, it began to hurt. Every month, it was more and more intense. I even had to go home from work once because I couldn’t stand. It was too painful. It was the first time it happened to me! So I started asking questions to myself… Because it started to hurt at random moments. I went to the doctor, and he told me it was caused by stress. I thought so too since I was in a bad mood, mainly because of my job. I was indeed stressed, and doubtful. I quit my job, thinking the pain would stop. But six months later, the pain was still here. So I went back to the doctor. His diagnostic: ‘it’s all in your head’. Well, I knew something was wrong, and I was sure it wasn’t just in my head.

I had appointments with other doctors who said more or less the same thing… Until I finally get an appointment with a well-known doctor. I told myself: if I pay a higher price, maybe someone will finally listen to me? After this appointment, I had many medical check-ups. The first MRI revealed I had endometriosis. When the doctor told me I had endometriosis, I had no clue what he was talking about! I remember researching on Google… I’m sharing this with you to show you that many doctors don’t know much about this disease.


AND THEN?

So I knew I had endometriosis. But what should I do then? The first gynecologist I met asked me: ‘Do you want to stop the pain, or have children?’. SORRY? Is that a choice to make? Since having children wasn’t my goal at this time, I asked to stop the pain. So I got strong painkillers. During the appointment, she told me ‘you know, it is difficult to get pregnant because of this disease’. As I said, it wasn’t my goal at this time, but hearing at only 27 years old that I may never have children… That’s hard. I came home crying. Months passed and the pain was still here. I just stopped my life at this time, and spent a lot of time alone. I started to eat gluten-free (it helps to relieve the pain). I felt very lonely. I didn’t want to tell anyone about my disease because I was ashamed. Why though? I still don’t know why…


AND NOW?

I researched a lot about this disease. I read a lot of articles. I met many people who also have endometriosis. I was amazed by the women who were saying ‘yes, I have endometriosis’ and were continuing to live their life as usual. On the other side, there was me: crying alone in my bed at night, refusing to meet my friends or attend some events because I didn’t feel good. Finally, I found a list of specialized doctors. My mom came with me to the first appointment. We talked a lot about lifestyle, society,… The result was: since the problem comes from menstruations, just let’s stop them. The doctor gave me the control birth pill. I couldn’t believe it. I thought it was one more useless thing. But, after a few months, I started to feel better! Pain finally disappeared! I felt like living again: going out, meeting my friends and family. I tried to stop taking the pill, and the pain came back immediately. So, it looks like I’ll have to take this pill everyday all my life…



This feedback is a few lines long, but in fact two years passed since the very first appointment. Two years of cries, questions, pain, loneliness. I’m not writing about it to get sympathy, but to help women here who may be suffering from the same pain. Maybe you are in pain and you would like to know why? I would also like to show that Instagram is not real life. I didn’t show all of this on my social media. I showed you events while I was in high pain. I continued to post and smile. We show only what we want to show. But now, I start to have more faith in the future!


Note:

Please note that it is not because you have pain during menstruations that you have endometriosis. If pain killers don’t work, and pain is too strong, please see a doctor.


 

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