Premenstrual dysphoric disorder: ten years without a diagnosis

Leo feels like he's been replaced. Your inner balance is out of whack – again. A feeling that comes back every month, always in the phase after ovulation and before menstruation. During this time, Leo, who does not want to be in the public eye with her full name and medical history, is often tense. She is angry at the world, feels empty, and has trouble sleeping.

During these two weeks of her cycle, she has to cry constantly and has difficulty dealing with conflicts, says the 30-year-old social worker. She feels this in every corner of her everyday life. “Sometimes I can’t work at all because of the crying fits, or I become more irritable when I argue with my boyfriend,” says Leo. Leo has struggled with the symptoms since she was 15 years old. She now knows the reason: Leo has PMDD – premenstrual dysphoric disorder. But almost a decade had to pass before she came to her diagnosis.

For a long time, many doctors did not have the disorder on their radar. According to studies, around 3 to 8 percent of all menstruating people are affected by PMDS. In Germany this corresponds to around 450,000 to 1.2 million people. Only in recent years has women's health come into greater focus and with it studies into the influence of hormonal fluctuations on the body and psyche. The research is still in its early stages.

Many doctors don't take the symptoms seriously

When Leo says that for so long she didn't know what was happening to her every month, she shook her head angrily. She used to think she had bipolar disorder. "Because it always changed like that. I felt great for two weeks and then I had this time again where everything felt empty or I was totally aggro." She first came across the possibility of having PMDD through a website that provides information about the syndrome. “I read the symptoms and thought: That’s me!” Leo turns to the Berlin Center for Women's Mental Health, where she finally receives her diagnosis at the age of 25.

Many patients who come to Stefanie Krüger have had such a long journey to their diagnosis. The gynecologist works in the Berlin center. It is one of the few that specializes in psychological changes caused by hormones. Many doctors do not take the disease seriously. Many of her patients were repeatedly told: “Don’t act like that” or “You have to go through that as a woman, many people have symptoms like that.” In addition, the diagnostic tools were weak, so the disease was not officially listed for a long time.

It was not until 2021 that the disorder was included in the current classification system for diseases, the International Classification System of Diseases (ICD-11), as a gynecological disease. “The symptoms such as increased irritability, sleep disorders, depression and even suicidality are psychological,” explains Krüger.

So which discipline is responsible? The question is not easy to answer and arises for several syndromes in which hormonal changes affect other organs. For too long, responsibility rested solely with gynecology, and interdisciplinary collaboration with endocrinology, which is responsible for hormones, was neglected. In general, studies and research have too often been aimed at Western men as the benchmark.

That is currently changing: “There are more researchers working on women's health and also more money,” says Birgit Derntl, head of the working group on women's mental health and brain function at the University of Tübingen. The Ministry of Research has also recently increased its funding of research projects on gender-specific topics, such as this year on menopause.

The German Research Foundation (DFG), one of the largest donors in this country, is joining in. Since 2020, research proposals must demonstrate the relevance of gender to the respective project. “This is one of the reasons why there is now more awareness of the relevance of gender among researchers,” says the psychologist.

Nevertheless, there are still studies today in which gender is not recorded or is not taken into account in the analysis. An upward trend with drawbacks. “It’s more of a lagging behind because gender-sensitive research has been neglected for so long,” says Derntl.

The causes of PMDS are largely unknown. What is clear, however, is that Leo's symptoms come from the fact that the brain of PMDD sufferers has difficulty adjusting to the monthly hormonal fluctuations. Early traumatic experiences are one of many risk factors. PMDD can also develop after major hormonal changes, such as pregnancy. Stress also plays a role; it increases the symptoms, but is not a trigger.

Maria Kühne, neuroscientist at the University of Magdeburg, researches the causes and treatment options for PMDS. She says: “There are some factors in the nervous system of those affected that are not the sole cause, but are related to the symptoms of PMDD.” Allopregnanolone, which usually has a calming effect, plays an important role. It is a breakdown product of the hormone progesterone, which is produced after ovulation. In PMDD, the nervous system adapts less well to the changing concentration of the breakdown product.

The serotonin system is also changed. Serotonin is a messenger substance in the brain that is involved in the regulation of mood, emotions, sleep and well-being, among other things. “In those affected, more serotonin appears to be transported back from the space between the nerve cells,” says Kühne. In addition, emotion regulation works less well in the second half of the cycle.

Studies have examined brain activity and found deviations in various areas. “We saw that the amygdala, the emotion center in the brain, is sometimes overactive,” says Kühne. “And the prefrontal cortex, which normally downregulates this emotion center, may not be doing that enough.” That could explain the increased irritability.

According to Kühne, the extreme exhaustion that many PMDS sufferers experience is, among other things, related to a changed immune reaction. "Markers in the immune system that signal to the body 'You're sick. You're staying in bed!' could be more activated in PMDS," she says.

Because the brain in PMDS cannot react well to the hormonal fluctuations in the second half of the cycle, those affected should adapt their lifestyle. For example, by avoiding anything in your diet that could increase hormonal fluctuations. This includes, for example, red meat, which can prevent the breakdown of excess estrogen. Cardio training also relieves symptoms. Drug treatment options include the pill, progesterone and antidepressants - the latter ensure more available serotonin. Although PMDS cannot be cured, it can be treated until symptoms are free.

Kühne is also currently researching a new treatment option. This involves stimulating the vagus nerve using electrodes that are attached to the ear using a hearing aid-like structure. “The vagus nerve does a lot in the body and brain,” says Kühne. It has an influence on the emotional center, on the immune reaction, on the parasympathetic nervous system, the body's “recovery system”. According to Kühne, research into this is still in its infancy. “But there are initial indications that PMDD symptoms may be able to be alleviated using the method.” And that without having to take the pill or antidepressants, which have side effects.

Currently, the costs of treating PMDS can only be covered by statutory health insurance companies. Because PMDS is not included in ICD-10, and the new ICD-11 classification system is not yet used in the German healthcare system.

Stefanie Krüger constantly experiences how difficult it is to cover the costs in her work in the center of Berlin. The gynecologist often has to discuss with the health insurance companies whether a treatment will now be covered. Antidepressants are usually taken, but with the pill it is often said that it is about contraception, “it is a lifestyle preparation and not a medication”. Krüger sees this as a stigmatization of PMDD in the health system.

The symptoms of PMDD and a lack of support are “a completely diabolical combination,” says Krüger. A combination that also increases the risk of other mental illnesses. Around 20 percent of those affected also suffer from another mental illness, such as depression, panic disorder or ADHD. Leo also says that she suffered from panic attacks for a while.

With the help of psychotherapy, Leo has learned to better deal with the symptoms. Because everything feels more extreme, she has to reflect more - that also has something good. She's trying to figure out: "Where am I stressed? Why is this so intense right now? What have I done differently than usual?"

But she hasn't yet found a treatment method that really helps her - and she really wants it to. “I just hope for better help for those affected,” she says. That's why she started raising awareness about the syndrome on Instagram this year. “So that they don’t think, like I did, that they’re wrong for ten years.” The first steps have been taken.