Manon – 25 years old: “How are we supposed to know when period pain is pathological when we’ve been told for years that it’s normal? »
“I got my period very young. Before I turned 18, I never had a problem, apart from a few irregularities and severe pain, but we are always told that it is normal to have a stomach ache at this time of the month. How are we supposed to know when period pain is pathological? And then around 20, I suddenly gained a lot of weight, even though I hadn’t changed my diet. It was driving me crazy, to the point of developing eating disorders. My period pains got worse, I had vomiting, my stomach was swelling all the time, a feeling of heat in my lower abdomen.
Read also >> What is PCOS, the leading cause of female infertility?
Sometimes I didn’t have my periods for several months, then they came back, lasted two weeks, were very heavy. 3 years ago I went to see a gynecologist, who told me that I was “cosy”, that I was worrying for nothing, that it happened to have disturbed cycles. I had to insist on doing other exams, I went to see another gynecologist who gave me an ultrasound. I was told there were « a few cysts », but nothing serious. So I said to myself that it must be “in my head”. It continued for several years. I was only diagnosed a month ago. It was a midwife who was recommended to me to help me regulate my cycles who told me about PCOS. She asked me lots of questions, especially about my anxiety disorders, the pain I had, my cycles, my insomnia, my TCAs… All of this is related to PCOS. I’m lucky to have come across this midwife. It was a long time, but being able to put a word on it all relieved me enormously. »
Louise – 27 years old: « The diagnosis was both a blow and a liberation: finally, I found the explanation for all my ills »
“I took the pill when I was 15 to 20. I had no particular symptoms, at least nothing that seemed abnormal to me. But we started talking about the side effects of the pill, I did a lot of research, and I decided to stop it. I was in a relationship at the time, and I needed contraception, so I opted for the copper IUD, which seemed best to me to avoid hormones. The months that followed were chaotic: greasy hair, acne breakouts, depression, mood swings, and, of course, excruciating stomach pains. During my period, I could not walk. Outside, I often had pain too, and “spotting”. But I was told that it was the IUD that caused this, that it was not serious, but that if I removed it, I would have to switch to hormonal contraception. Sometimes it was better, but overall, it was not joy. I knew something was wrong, but every gynecologist I saw told me it was in my head. I’ve been infantilized all this time. I lasted 6 years. When I had to change the IUD, I had extreme pain. My gynecologist told me that there was a lot of blood around the one she removed, and asked me to do an endovaginal ultrasound three weeks later to check that the new one was in place. The next three weeks were filled with pain, vomiting, bleeding and bloating. On ultrasound, the midwife asked me how I could have had a copper IUD when I had PCOS, since copper creates inflammation and worsens symptoms. I asked “SOP what?”, I had never heard the word. She simply told me that it would be difficult for me to have children, but that, in any case, there was nothing to be done. I cried on my way out, do my research myself. I blamed myself for not doing anything more, but afterwards I realized that I had spoken about it several times without anyone ever taking me seriously. I felt like I was betraying my body by forcing a copper IUD on it, the worst thing to do with PCOS for years. I asked to have it removed immediately, and soon saw an improvement in symptoms. As I didn’t want to take the pill again, which is the only solution I was offered, I adapted my diet: no more gluten or dairy products, a drastically balanced diet, and food supplements promoting fertility. Supplements that cost me €50 per month and which are obviously not reimbursed, but which I take because they really help to reduce my daily symptoms (bloating, acne, stomach aches and extreme fatigue). The diagnosis was both a blow and a liberation: finally, I found the explanation for all my ills. »
Audrey – 30 years old: « I have the feeling that I am not a real woman »
“I was lucky, I was diagnosed quite young, around 16 years old. I had my period for a few years now but my cycles weren’t coming back and I had blood clots in my discharge. My flows were also very irregular. Either extremely abundant or less. I had hair, too much hair for a girl. I was told I had ovarian cysts (which I actually don’t since the term “polycystic ovarian syndrome” is a misnomer), I was given treatment without explanation . I understood later that this treatment, I would take it for life. I had no indication of the side effects of this medicine, which is quite heavy since I had to change several times in the face of intolerances: I had very violent headaches and strong nausea. Fifteen years later, I have the impression that no progress has been made on the question of PCOS. I have to do my research on my own, or else it’s word of mouth. What scares me a lot more now than then, though, is the possibility of it affecting my fertility. I live it as a fatality: it’s there, it’s like that, nothing can be done about it. So we adapt. I try to keep track of my menstrual cycles as best I can through an app, to plan important professional appointments outside of times when it might fall, even if, since I never know exactly when it’s coming, I have often “leaks”. Besides, I no longer move around without hygienic protection. And then, of course, it costs me dearly as a beautician! My hair bothers me a lot. Between that and the fact that maybe I could never be a mom, I feel like I’m not a real woman. »
Capucine – 28 years old: « For years I had the impression of not being listened to, sometimes even exaggerating what I felt »
“In January 2020, I am going on a trip to Copenhagen for work. Once there, I realize that I forgot my pill. I don’t take it for three consecutive days. When I return to France, I immediately call my gynecologist. She asks me to wait for my next period before starting a new pack. I’m not too worried, because a few years ago, I hadn’t had my period for four months after forgetting to take a pill. Except they don’t come. In full confinement, I cannot consult. I then put on five kilos in two months, I have extremely oily hair and, above all, a lot of acne on my back which makes me suffer. I consult my gynecologist at the end of June 2020, the diagnosis is immediate. I do an ultrasound and a blood work which confirms PCOS. The announcement on infertility was difficult to take but my gynecologist immediately reassured me by explaining to me that it would undoubtedly be more complicated to have children, but not impossible. What I experienced very badly was the fact that no solution was offered to me to alleviate the symptoms. I explained to him that some of them had a significant impact on my self-esteem, and I was told: “oily hair and a few pimples are not a big deal. I then consulted an endocrinologist. She told me that there was not much I could do except take a drug that could cause brain tumors. I chose not to take the medication, which otherwise only worked for acne. Likewise, I will always remember that phrase when I told her about my fertility concerns. “Don’t make a film, you will surely not have children. “It was so violent that at the time I could not talk about it to my relatives. It took me 10 years to be diagnosed. I’ve been on the pill since I was 17, which had the effect of masking some symptoms. However, I had spoken to several gynecologists about pain during intercourse and mood swings that I thought were related to the pill. Again, I was told that it was stress related and that I had nothing to worry about. For years I had the impression of not being listened to, sometimes even exaggerating what I felt. Now I have to watch my cholesterol level and I try to exercise two to three times a week. Physical activity is the only thing that has really helped me so far. I had asked my gynecologist and endocrinologist for advice on managing it on a daily basis, I was told that there was nothing to do, that I would have to consult when I wanted to have a child. I really feel like that’s the only aspect that matters. »
#Testimonials #live #PCOS #talk #disease #Elle
