Endometriosis: our readers tell about their fight against the disease and their tips for living better with it

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“You should never despair!”, Anonymous witness, 20 years old

From my first period, at the age of 12, I immediately suffered from very severe low back pain, to the point of fainting and often ending up in the hospital. The doctors told me for 7 and a half years that I had absolutely no endometriosis, but the still debilitating pain pushed me to do an MRI. But it was not until 6 months after this that a gynecologist finally told me: “But yes, you have endometriosis in the uterosacral ligament!”.

Deep down I always knew that these pains could not be trivial! So I have endometriosis for 8 and a half years, during the first 6 years, I had extremely bad pain during the first 4 days of menstruation in the lower back, to treat this pain I therefore took anti-inflammatory drugs which in the long run resulted in gastritis almost every year (my stomach is so fragile that even today I continue to have it quite often). Then, the lower back pain began to be chronic, that is to say that even outside the cycle I was in pain almost every day of the month (less severe still fortunately). Endometriosis for me is also a lot of digestive pain, it’s muscle tension in the lower back, it’s about facing the side effects of all the pills I try in vain, it’s a real fight!

My advice to other women: In my opinion what is likely to be the most effective is the pill! I advise you first of all never to be discouraged, I remain convinced that one day each of us will find its solution, that each of us will find a way to soothe the pain. There are a lot of natural things to try, you should never despair!

“The hardest part? Accepting that this disease is for life”, Maellys, 17 years old

I have suffered from stomach pain for a long time. I saw several doctors, but nothing could be found. Usually, we blamed it on stress. But a year and a half ago, I had a very big pain attack, so intense that I ended up in the hospital. They thought about appendicitis, but that wasn’t it … So I was sent home.

Fortunately, my GP looked into the matter and sent me to see a gynecologist specializing in endometriosis. The latter asked me several questions, and after seeing that I had several symptoms (pain in the lower abdomen, during sex …) she gave me an MRI and the diagnosis fell: I have endometriosis.

At first, endometriosis was mainly manifested by pain in the stomach and during sex. Over time, digestive problems (diarrhea, constipation every day) were added. The pains have become more and more intense, to the point that I am often absent from high school: it is very disabling, I have trouble following classes, I am very tired … luckily I have very teachers. understanding.

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Today the side effect that cripples me the most is the one about having sex, it’s almost impossible, and that’s something that affects me a lot. It is very hard to have to hold back when you want to … Also, it is important to remember that the treatment that is given to prevent the aggravation of the disease (generally the contraceptive pill) has undesirable side effects to say the least! Personally, after testing 5 pills, I was treated to pimples, oily hair, + 7kg on the scale, a drop in libido, uncontrollable mood swings …

In my daily life, endometriosis really impacts me, whether in my romantic relationship, my professional life, but also financially.

The solutions : I do not have effective pain relief methods, the pill does not prevent my pain, going to an osteopath or something else has not done me much … To be honest, the drugs are relieving me, but make my stomach hurt so I only take it as a last resort in case of severe pain attacks. What helps me feel better is less “scientific” and more personal: my entourage, particularly my mother and my boyfriend, who support me enormously, and this is what helps me to hold on when I am in pain, I just think very hard of them, telling myself that I must fight to live and be happy.

My advice to other women: I think it’s important to refocus on yourself, to come to love and appreciate our body despite what it makes us endure. What has been the hardest for me is accepting that this disease is for life, and if I can give any advice to women with endometriosis and especially who have just found out, it’s about not ignoring what’s happening to us, accepting it and figuring out how we can live with endometriosis.

“I was diagnosed after 10 years”, Joyce, 22

Before the diagnosis, made when I was 21, it had been 10 years since I had my period, sometimes hemorrhagic, and I suffered from excruciating pain, sometimes very disabling. My periods were unusually heavy, painful and extremely irregular: I could have them 1 month non-stop or 3 times a month.

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So when I was 15 I saw a gynecologist and my mother demanded that he check that I didn’t have endometriosis. He assured that I was too young, that my pains and other “worries” (were his words) were due to the fact that my mother herself had had a painful period.

After that, no doctor saw fit to give me the slightest exam to confirm or deny my mother’s suspicions, so I continued to live with it. During this time, it was discovered that I suffered from chronic fatigue without knowing where it was coming from. I also started to complain more and more about my back, but everyone blamed it on the many sports I played at the time, growing up and even scoliosis (which I didn’t. have not, obviously).

When I started having sex, I realized that I sometimes had more and more pain during and / or after. My mother suggested we go back for the endometriosis. I was finally taken seriously and given a doppler ultrasound. Nothing … yet the symptoms were there and had to be more and more present as I grew older. I suffered from chronic fatigue, pelvic pain during and sometimes outside of menstruation, pain during and / or after intercourse, lower back pain, and pain during bowel movements. We ended up blaming my pain and everything on my polycystic ovary syndrome. So I was satisfied with this diagnosis which tended to explain some of my symptoms.

The diagnosis : But now, in July 2019, during an examination that was done to me before an operation (embolization of a vein in the uterus), the doctor discovered with amazement that I was suffering from endometriosis. She asked me why I hadn’t reported it and I still replied in shock that she was the one telling me. And that my mom and I must have been fighting for more than 5 years to get a sure diagnosis. She looked at me confused, apologized for the way she had told me the news, and asked me what I knew about the disease. As I knew very little about it, she took a good half an hour to explain the various symptoms, the possible treatments and the possible consequences on my health, my social life, my love life and my potential family life. She also explained to me how this disease was still unknown to the public and the medical profession, but reassured me by saying that doctors were learning a little more every day and that there were even specialists.

The solutions : artificial menopause treatment, which results in temporary suppression of periods, rest, lots of rest (although I refuse to allow myself), medication when the pain is no longer manageable, my relatives who even without knowing it , for a moment I get out of this bubble in which I have locked myself for 11 years now.

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My advice to other women: Don’t be afraid to talk about it! Don’t shut yourself up. Verbalize what you feel. Explain what you go through on a daily basis. And above all, keep your head up! You are a strong woman and even if sometimes it is hard you will emerge victorious!

Thanks to our readers. Soon on this page: new testimonials.

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