After several years of suffering, Judy was diagnosed with endometriosis at age 17. Just when she thinks she can put an end to her pain, her treatment turns into a real obstacle course. The twenty-year-old tells us how this illness affected her school, professional, social life and her mental health.
- At the age of 11, Judy had her first period and suffered from abdominal and pelvic pain, which persisted and became increasingly intense over time. It was only at the age of 17 that she was diagnosed with endometriosis.
- After about six years of diagnostic wandering, the twenty-year-old took several medications, including pills and treatment for neuropathic pain, which did not work to relieve her pain.
- Faced with ineffective care and doctors who do not listen to her, she isolates herself and suffers from depression. During this dark period, the patient was helped by her psychiatrist.
“I had my period at 11 years old. As soon as it appeared, it was always accompanied by pain in the lower abdomen, which extended to my back. The more the months passed, the more pain I had. For example, he “I couldn’t play with my friends and had to stay in bed for a week.” confides Judy, who is now 23 years old. Faced with the young girl’s dysmenorrhea, her mother decided to make an appointment with a gynecologist, who prescribed a non-steroidal anti-inflammatory drug (Antadys). “At that time, everyone thought that this medicine was effective in relieving menstrual pain. However, by the time I was 12, it was no longer working on my body.”
Thus, the one who today became a nursery assistant suffered constantly. “I had a lot of absences from classes and bad grades, because it was impossible to concentrate because of the pain. In addition, I was drowsy because the treatments I was taking, even if they didn’t work, put me to sleep .” His mother does not give up and decides to consult different practitioners. They ask him to do a magnetic resonance imaging (or MRI). “This exam revealed nothing. However, I still had pain, but I didn’t know what I had. The doctors told me that it was normal to have pain and that all women experience That”, remembers the patient.
“In my case, endometrial tissue is everywhere: stomach, ovaries, intestine, kidneys, back…”
It was when she was 17 that she understood that her pain was abnormal. “In 2017, I was in BTS. Because of my pain, I often went to see the nurse, who had specialized training in endometriosis and was really worried about me. Thanks to her, several adjustments , like the online or videoconference courses, were set up for me but also for my nine other classmates who had dysmenorrhea. In addition, she recommended several specialists who thought they were clear on this gynecological disease.” of which 10 to 15% of women are affected in France.
In December, the Parisian takes a battery of exams. Verdict: she suffers from endometriosis and several areas of the body are affected. “This pathology is defined by the presence, outside the uterus, of endometrium (that is to say fragments of uterine mucosa). These cells, which migrate, attach to other organs, which which causes inflammation and thus pain during or outside periods. In my case, endometrial tissue is almost everywhere: stomach, ovaries, intestine, kidneys, back…”
At the beginning of 2018, she was referred to various specialists, who told her that she had a severe form of endometriosis. Judy presents the “five big symptoms” pathology: pain during menstruation which lasts a week and whose flow is abundant for the first four days, dyspareunia (pain during sexual intercourse), inability to move and move around in case of pain, vomiting and nausea and dizziness. Additionally, she suffers from back pain, heartburn, chronic fatigue and has more sensitive kidneys. “I also get sick very often. Since my body is already fighting endometriosis, my immune defenses are less able to fight infections,” deplores the twenty-something.
Endometriosis: “I tried at least seven pills that didn’t work”
To treat this condition, health professionals prescribe hormonal treatment. “I tried at least seven pills, which did not work and caused either spotting (i.e. vaginal bleeding occurring outside the period of menstruation) or heavy periods lasting one to three weeks. Despite The doctors told me to be patient, but I couldn’t take the constant pain anymore! No one could understand what I was feeling… It burned, it stung, I had the impression that “My skin was twisting, I was having contractions too. It was a mix of sensations that I can’t explain.” exclaims the patient.
In order to find a solution to relieve her pain, she toured the hospitals of Paris with her mother. In the first establishment, the practitioners tell her that these pains are linked to her being overweight and that she must lose a few kilos. “I didn’t understand this reasoning, so we went to another hospital. One of the gynecologists prescribed me a pill and Neurontin, a medicine used to treat persistent pain caused by nerve damage. I had to take them all days, but after a while, they were no longer effective. I then increased the doses under the advice of the specialist. Problem: this very powerful treatment was constantly making me vomit. So I talked to him about it , but she didn’t listen to me”, explains the nursery assistant, who now no longer has a gynecologist and is only followed by her attending physician.
During adolescence, “I was stressed, anxious and even suffered from depression”
At that time, his employer and colleagues were not at all aware of endometriosis and blamed him for his numerous absences. “They didn’t understand that it didn’t make me happy not to work. When I was off work, I wasn’t paid, because there was no menstrual leave. Fortunately I lived with my parents and “They helped me finance my health costs, because unfortunately, this is not the case for everyone and women’s access to long-term illness status (ALD) is difficult to obtain.”
The Parisian’s social life also takes a hit. “Given that the frequency and duration of the pain are variable, we cannot predict anything, for example evenings with friends, because we do not know when they arrive. During a good period of my adolescence, I stopped living and it was killing me. I was alone, very sad, I cried often, I was stressed, anxious and I even suffered from depression.” Looking back, the twenty-something believes that staying alone is not the “best thing to do”. “When you’re at your lowest, you need to be surrounded by others. Even if you’re lying in bed, it always feels good to have someone next to you or on the phone. It brings you back to life. “
“My psychiatrist did not judge me or look at me with pity, which is very unpleasant”
After this dark period, she forced herself to go out for a very long time. “I knew that without contact with my friends, I couldn’t have a social life even though I wanted to have one.” Growing up, the young woman admits to realizing that pushing herself had limits, especially in terms of her body. It was at that moment that she decided to raise awareness of endometriosis among those around her. “I wanted my friends to understand that I couldn’t go out because I couldn’t move and not because I didn’t want to! So I informed myself well about my illness and then I sent them and shared documents. Some quickly understood my suffering, especially when they saw me in the middle of a crisis.”
During these difficult times, his psychiatrist also helped him a lot. “She taught me to continue living by giving me tips to better manage and calm the pain. For example, always having a small hot water bottle with me or using an electrostimulator which unfortunately is not not reimbursed. This specialist also advised me to occupy my mind during the pain by drawing, reading a book or continuing to prepare food. These are things that seem to be simple, but in the event of a crisis, it is hard to do.” With this professional, Judy was also able to completely give herself over. “I was able to speak with an open heart, because she didn’t judge me or look at me with pity, which is very unpleasant. Furthermore, before being followed by a psychiatrist, I told myself that I I was incapable when that wasn’t the case. I just had a disability that I didn’t choose to have!”
Endometriosis: “a derivative of opium” and sometimes “CBD” to relieve pain
Today, the patient combines the tips of her psychiatrist and a medication prescribed by her general practitioner to alleviate her pain. “It is an opium derivative that I only have to take twice a day, because there is a high risk of overdose in large doses. This treatment really relieves me, but it puts me to sleep . From time to time, I also consume cannabidiol (CBD) in the form of oil, gummies, massage balm or infusion.” Thanks to these various remedies, the nursery assistant has regained a social life and is less absent from work. “My current employer is very, very understanding. During the interview, I warned him that I suffered from endometriosis. He then set up a system to be able to replace me directly when I am on sick leave because of my pain.”
