Finally, after the pregnancy, my diagnosis: PMDD

PMDD is a cyclical, hormone-based condition with symptoms which occur during the premenstrual phase (also known as luteal phase) of the menstruation cycle, which generally lasts from ovulation to the start of menstruation. Even though there’s nothing wrong with your hormones, you react violently to the rise and fall of the hormones estrogen and progesterone. When you suffer from PMDD, you may experience quite severe mood swings and anxiety. This significantly affects your daily life and work or school. At times, when you are most affected by the symptoms, it may be difficult to do normal tasks such as household chores. It can also put strain on your relationships with your family, partner, relatives and friends, for example. 

You tend to lose interest in most things, and you may feel as if you’re living under a heavy dark cover for this period of two weeks. Persons suffering from PMDD have an increased risk of suicidal behavior. Many, but not all women with PMDD have a history of early youth trauma, physical or psychological abuse, sexual trauma or depression. There is no blood or saliva test to detect PMDD. Research indicates that 1 in 20 women suffer from PMDD. Yet many doctors fail to diagnose the disease. As a result, it sometimes takes 12 years before you get a diagnosis.

Ever since my teenage years, I have been battling with vague symptoms. I started menstruating at the age of 10 and went on contraceptive pills soon after that. Around the age of 16, I began to suffer from complaints such as extreme fatigue, very frequent headaches, violent menstruation cramps, palpitations and panic attacks. I was taking my exams at that time, I had a nice part-time job, and just like every other teenager, I was enjoying life. But because of these complaints, my life suddenly came to a standstill, I was no longer able to pursue my further education, had to remain in bed for days and was had a hard time doing my work. And then the medical mill started. The GP thought he’d heard a heart murmur, so I had to undergo several examinations in hospital. But the tests did not provide any conclusive results. It was believed that I had suffered from exam stress and been overworked. I was diagnosed with anxiety disorder and from there, my journey through the world of mental health care began.

I followed different types of therapy, and they indeed had the desired effect, which made me believe, too, that my complaints were indeed due to my sentiments of anxiety. So, I trusted my doctors. Nevertheless, the new therapies always only brought short-term relief. As soon as I wanted to resume my life, things would often go wrong again. The complaints were never really gone, so I learned to live with them. But I couldn’t really live my life like a regular teenager. Unfortunately, I had never been able to resume academic studies.

And working became more and more difficult. This was so frustrating, because wasn’t it after all only happening inside my head? Why wasn’t I able to flip the switch? And so, I went back to my family doctor, I wasn’t feeling well at all! Around the age of 21, I experienced mood swings and depressive feelings. In the meantime, I’d already changed my contraceptives repeatedly. I experienced more and more breakthrough bleeding and increasingly menstrual complaints. At this point, I opted for an implanon implant. That went quite well for a time, but then I started bleeding very strongly, I slept poorly, and my heart was racing very rapidly. The blood was literally running down my legs as if I were peeing in my pants. I constantly had to go to my physician, but there was never a real solution. In addition, I became increasingly ill and experienced mounting feelings of depression and even suicidal thoughts during this time. Especially the latter shocked me enormously.

But then these complaints vanished again. It was all a mystery. My family doctor thought I was going through another spell, so he advised me to talk to someone again and to take antidepressants. I abstained from the latter. But I did go back to talking to someone. I did some research myself and gained some really valuable insights. Because I kept hitting dead ends in the medical world, I made an effort to learn more about my condition myself. I had begun to see a pattern in my menstruation and psychological complaints.

I believed very strongly that my complaints were in fact related to my menstruation cycle. I searched the internet and came across the website of the PMDD foundation. All of a sudden, a whole new world opened up for me. This is exactly what I was wrong with, I thought! Although I now finally had an understanding of what I had been dealing with since my teenage years, nobody paid any attention to me! In the meantime, I felt increasingly sick, and my mental state deteriorated enormously. I couldn’t go on, and in the meantime, I was still bleeding. I saw one gynecologist after another gynecologist, yet no one came up with a solution. This condition lasted for quite a while.

Eventually, in 2021, I had keyhole surgery to rule out certain illnesses such as endometriosis. I was relieved to finally have someone take a closer look. I abandoned the idea of PMDD for the time being, as I was already happy at this point that someone was at last doing something. However, nothing came out of this examination. I wasn’t relieved at all. I thought by myself, if only they’d found something. From this point on, things just spiraled further out of control, and I really couldn’t go on anymore! Two weeks after the operation, I saw the light: I ceased using all contraceptives – over the years, I had tried out almost all contraceptives, on the advice of the doctors. And from this point on, things improved. Stopping the use of contraceptives has been my best decision ever! The bleeding stopped, I became happier by the month and my cycles became longer and longer. It went so well that even the panic attacks disappeared and my depression subsided, allowing me to get  a grip on my life again.

After feeling really good about myself again for while, I finally dared to hope for a brighter future again. And my desire to have children began to flourish again. Together with my partner, we decided to try for a baby. Pretty soon, I was pregnant. A really tense period, but so much fun – my dream had come true. Or not? Unfortunately, I miscarried at an early stage. This only made us realize all the more that we wanted to be parents. And we tried again quite quickly. After the miscarriage, I quickly conceived again. Everything went well. From a mental point of view, I felt better than ever, wow! I was on a happy high from my pregnancy hormones.

Until I fell sick at 32 weeks. I was admitted to hospital at 34 weeks, and I was diagnosed with pregnancy poisoning. What a shock! I knew about the effects of medication on my hormone balance. So I wanted the birthing to be as natural as possible. Unfortunately, this was no longer feasible, and I was given all the medication needed to keep me and my baby stable. At 36 weeks, delivery was induced because my body had become too sick and my blood pressure was intolerably high. Our daughter was born at 36+4 weeks.

We made it once again, I thought. We took it easy as a young family. Properly recovering my health was a really vital issue, because my body had taken quite a few blows. Receiving visitors, for example, was on a back burner. My no. 1 priority was rest and even more rest. Even though I could barely stand on my feet from sheer exhaustion and weakness, I immensely enjoyed our baby. I thought by myself that my hormones were coping quite well after all the medication I had to take! Unfortunately, my optimism was misplaced, because 10 weeks after giving birth, my PMDD symptoms returned with a vengeance.

During my first menstruation after childbirth, I suffered a total collapse. My pink clouds disappeared. I was no longer able to derive any pleasure from anything, I slept poorly, I was extremely stressed, suffered numerous panic attacks and felt restless. I could literally feel the hormones raging through my body and was quick to overreact. I was devastatingly unhappy. And all of this occurred regularly, every two weeks before my period. I changed from a person with a purpose in life and the ability to immensely enjoy myself into a monster that just wanted to lie in a dark, soundproof room. At times, I even yearned for death.

All of these symptoms persuaded me that without a doubt, my affliction just had to be PMDD. With a heavy heart, I went to see my family doctor again: I really need help! I couldn’t go on like this, I was in pure survival mode. It felt as if I were stuck all by myself in a bottomless pit. In tears and accompanied by my baby and my sister, I went to see my physician. The day that changed my life. I couldn’t see my then current family doctor, but his colleague instead. I repeated my story and explained my suspicions regarding PMDD. I asked him once again to refer me to a specialist gynecologist. For all my years of suffering and complaints, I finally achieved my goal on that day. I got my referral. And soon afterwards, I was diagnosed with PMDD.

For the first two months of my cycle, I still expected the PMDD symptoms to become gradually less intense month over month. But unfortunately, this didn’t happen, I only felt worse. In addition to the PMDD symptoms, revealing thoughts such as “What if I push my baby underwater?” or “How about I push a burp cloth down on her face?” began to flit through my brain. These thoughts were not only aimed at my daughter; they also targeted me. “What if I jumped in front of the car?” I felt nauseous at the thought of harming my little baby. How could I even entertain such thoughts? I felt extremely insecure and couldn’t understand why I was plagued with such thoughts. I now understand that these thoughts are all upside down: in fact, my sense of responsibility for our daughter is extremely high. At the time, however, I felt like an extremely bad mother, and I thought I was going crazy. 

Fortunately, I learned to cope with these sentiments in therapy. I cried very often and had a mental crash almost every month. I had little opportunity to catch my breath because after giving birth, my menstruation cycle became very irregular, meaning that my period would often come again after two weeks. As a result, PMDD symptoms persisted. As I am writing this piece, I am overcome by a tremendous sense of panic: How did I manage to deal with everything in the first place? This situation is not of my choosing: not for myself and also not for my partner or our daughter. Despite everything, I’m convinced that our daughter is hardly affected by my condition, because I am on autopilot when it comes to providing her with care and attention. For my partner, too, there have been many anxious moments. Sometimes he literally did not know what type of situation he would have to face at home on his return from work, and often he left the house in trepidation due to my massive mood swings. I would swing from being through with life in one moment and happily celebrating a birthday party in the next, and all of that easily on a single day.

Besides my partner, only my sister knew what was going on in my life. I always behaved in such a way that the people around me hardly noticed anything. It’s all in your head, there’s nothing to see on the outside. PMDD is a condition that the people around you will find difficult to understand. I would sometimes tell them that I was going through a difficult patch, but I didn’t talk about the actual details of my condition. I didn’t want to worry anyone. And I wasn’t ready for unsolicited advice!

I needed all my energy to focus on therapy and on taking care of our daughter. Pretty soon I started to write a lot in my Instagram story to get it off my chest. This also became my open diary. I received more and more supportive messages from women who saw their own stories reflected in my posts. This made me decide to continue in this vein. In the end, I also shared my story with the people around me. Despite my candor, I still notice that the people around me do not realize under what dark cloud I had been and still am living. But I don’t blame them. PMDD is a complex condition.

When my daughter turned 1, I decided to follow my gynecologist’s advice to start with Lucrin injections. This put a stop to everything. In addition, I am doing hormone therapy. I am still in the early stages, and I hope that it will eventually have fewer complaints than before. In addition, I have started with an EMDR therapy – I turned out to have quite a lot of sore spots. It was time for a major shake up. It is hard and it takes a great toll on me. But fortunately, I have become more adept at parenting and at coping with PMDD.

But it does require a really solid structure. During the day, I get some rest while my daughter takes her afternoon nap, and I am going to bed quite early. I make sure to get sufficient exercise and lead a healthy lifestyle. Sometimes I am frustrated by my lack of energy and my tendency to overreact. The worst are still the mood swings, I simply can’t get used to them.

Each person must find their own approach: what helps me may not work for you. It remains a quest. For me, contraceptives and antidepressants simply produce the opposite results, while in other people, they may lead to a reduction of symptoms. Find out what works best for you with the help of a specialist gynecologist.

Here are some tips which worked for me:

• Going to bed at fixed times (9 hours of sleep)
• Meditation
• Structure
• Sufficient exercise
• Catching some rest during the day.
• Incentives that create space to cope.
• Avoid stress as much as possible.
• Be aware of what you are ingesting.
• Clearly define your boundaries.

Does reading my blog ring a bell with you? Ladies, menstrual complaints are something you have to take lying down!

Make your thoughts & complaints a topic for discussion. You’re not alone! 

With all my love,

Vivian