My Journey with PMDD Part 1: What It Is and How I Came to Know it
Updated: Mar 2
*I am not a medical professional and everything here reflects my personal experience only.
It’s 2017, I’m 26 years old, I move back to my hometown, Portland, OR. I finally get a job that offers health insurance (ha!) and am excited to get an IUD. I had been on the pill for almost 10 years (microgestin) but was aways bad at remembering to take it. I schedule an appointment and get the Skyla IUD. Stoked!
My PMS is becoming more and more difficult and lasting longer and longer. I had always experienced PMS - moody, irritable, breast pain, starting about 5 days before my period. But now, PMS was unbearable. 10-12 days BEFORE my period my breasts were in severe pain, my mood swings were erratic and extreme, I experienced deep sadness, I was constantly on the verge of a meltdown, and struggled to make simple decisions. Some people with PMDD experience more extreme physical symptoms as well, but for me it affected (affects) my mental health.
All of the above worsened. I became depressed and anxious, I felt overwhelmed by everything, I felt like I couldn’t connect with people - like I was speaking to people from behind a veil or in another dimension. I was so fragile and cried about everything. I'd spend time thinking about changing my life up drastically - quitting my job, ending my relationship (running away). I didn’t like myself or even know who I was for about 10 days out of the month.
At this point my emotions began to affect my work and my relationship. I was curt with my bosses and my customers, I was a nightmare for my partner. And despite this happening consistently, each month it was like a surprise and would hit me like a ton of bricks. It took a while for me to connect these mental health symptoms that were starting two weeks before my period...to my period.
For a while I really tried to keep this under wraps - I didn't know how to explain my feelings or what I was experiencing, especially since it was something that would come and go - it wasn't perpetual. I thought... I'm not depressed because two weeks out of the month I'm happy, clear headed, and in control. No one would understand. I didn't even understand I just felt unhinged. PMDD controlled me and averting some sort of disaster or rash decision or blowout fight during the two weeks before my period was challenging.
One afternoon, as my boyfriend left for work, I fell apart. I was terrified of being alone, I was angry at him for leaving, and angry at myself for feeling this way. This sounds ridiculous but I don't know how to explain the deep dark hole - you just have to experience it yourself. Anyway, I could see his concern and confusion. He tried to understand and asked me to help him but that was the problem… I had no idea what was wrong. I didn’t know why I felt this way. This was the day I realized something was really wrong and it was disrupting my life.
I scheduled an appointment with Kaiser, shared this experience with the doctor. I mentioned that the only thing that had changed in my life from the onset of these symptoms was my IUD (but was told this had nothing to do with that). The doctor, after some time, told me it "was probably PMDD" - Premenstrual Dysphoric Disorder. This was the first time I had ever heard of this. I asked what to do, and she told me the treatment was SSRIs.
I believe there is a time and place for antidepressants and that they are little miracles for many people, but I had JUST learned about this disorder - and the FIRST thing that was recommended is antidepressants? They really do give these out like candy. I said, okay well there has to be somewhere else I can start - what can I try first? After pulling teeth, no really - she literally said
"well then what do you want from me"
at one point. As I'm sitting there crying my eyes out saying I don't know but I don't want antidepressants. The doctor finally “I guess I could refer you to a naturopath. Do you want me to do that?”
Um, YES. Hello, YES, why was that so hard. You really do have to advocate for yourself but that is really hard when you don't have any idea what is going on.
Anyway, I scheduled an appointment to get my IUD removed (because I knew this must have had a role). I scheduled an appointment with the naturopath. I’m feeling hopeful.
The naturopath was much kinder. She spent an hour asking me questions, seconded the PMDD analysis, ran a bunch of blood tests, taught me that gluten has an effect on your hormones (note: I had already been experiencing sensitivity to gluten so I tried to avoid it but this was when I finally decided to kick it for good) and gave me some herbs to take (these were pre mixed herbs in a capsule - a generic formula for PMS symptoms).
I tried the herbs and a strict GF diet for several months and really felt little relief. I also was more diligent about my exercise and eating - even though I already ate pretty healthy and went to yoga several times a week. Come late 2019 my anxiety increased and I actually started having panic attacks. I was going to dinner one night with my boyfriend, in my pre-period state - unavailable, unpredictable, emotionally out of control - and I had to leave the dinner table and make my way to the restaurant bathroom while the walls were closing in on me, and had a panic attack in the restroom.
Fast forward a month and I had a full on meltdown at our 2019 family Christmas dinner - we were going around saying what we were grateful for and I felt that if I opened my mouth I would crumble so I had to leave the table and fell apart in my childhood bathroom. I terrified my mom because she found me a mess and I hadn't talked to her about the extent of my PMDD symptoms.
By this time I am accustomed to the pattern. I learned that after the first two weeks of my cycle to brace for what’s coming. I learned that it’s best if I don’t see people the second two weeks of my cycle. I learned that driving and listening to music was therapeutic and kept me away from people/my partner so I would drive around aimlessly for an hour or two randomly, crying. And to be frank some of those drives consisted of me imagining driving very fast into a concrete wall. I would not have considered myself suicidal but I thought about it sometimes. Unfortunately this is a common PMDD trajectory. For me, I felt I was such a nightmare for the people in my life - it would have been better for them if I wasn’t there.
Speaking of that, my poor partner was walking on eggshells around me most of the month and that was not fair. My brother happened to be getting his masters in acupuncture and Chinese medicine in town, so I decided to talk to him. He had a professor who specialized in women’s health who agreed to see me - third time's the charm right?
I meet Dr. Jin, who was indeed the charm. She has changed everything for me. We had a two hour consultation where we walked through...everything. It was really exhausting, I was a mess for most of it. But, she felt she could help me and agreed to take me on as a client. She was very honest that this was not a quick fix. She said that the longer you are on birth control, the longer it can take for you body to recalibrate essentially. She said that we should schedule out weekly appointments for six months and then we would reassess. She gave me herbs that coincided with my menstrual phase and/or my symptoms, and the blends and dosages changed often. I took them every morning and night, and still do. It took about 3 months to start noticing changes, but it wasn't consistent yet - month to month was different. By month five I had two consecutive months without any severe symptoms. I still felt nervous each month, in disbelief that I would make it through without having spiraling thoughts, outrage, frustration, depression, yada yada.
We ended up continuing weekly for 7 months, and then we switched to every other week and have carried on with that. The goal is to move to once a month and then, possibly, once a quarter. She has helped me see a way through this with herbs and acupuncture and given me a box of tools to tap into during PMS. I am so grateful for her and feel that I am in a completely different place than I was when I first saw her 12 months ago. I still experience anxiety, breast pain, and irritability, but I have not had a severe/debilitating month in over 6 months. The approach to managing this is truly holistic, and I notice if one pillar is off (herbs, diet, acupuncture, exercise, stress levels), my symptoms worsen. This makes me feel like I am in control however, like I have the answers to stop it. It is empowering.
I realize this is not a one size fits all solution, and that for many women with PMDD nothing has worked, or antidepressants are the key, or a hysterectomy is the only answer. This is why I feel so grateful to have found Dr. Jin because she has truly been a miracle - I felt very strong about ridding my body of all birth control and confronting this naturally, and she supported that. I still have PMDD of course, and it turns out I had it for many years but wrote it off as "bad PMS" until it became debilitating (fueled by stopping the pill and getting an IUD - I think). Now it is about management, and acupuncture and Chinese herbs will probably be a part of my life forever in some capacity.
To come full circle, I do not know if the Skyla IUD had anything to do with my worsening PMDD, while the timeline lines up (symptoms became extreme soon after getting my IUD) my symptoms didn’t improve once I had it removed. There are studies that say hormonal birth control can help PMDD and studies that say it can worsen it. I am not an expert - it seems to be different for every person. I did know that the right thing for me was to detox my body of all forms of birth control and get back to my natural state and then go from there. Queue learning the truth about the pill - more on this in another post (hint: yikes).
Why am I sharing this? I'm not fully sure - but when I was learning about PMDD I read several blogs in addition to medical journals. Each one was more validating and made me feel like this was something I could conquer because other people had. So I guess you could say awareness and solidarity. PMDD diagnosis can be challenging because the symptoms align with a lot of mental health conditions and not a lot of people know anything about it (even though it affects about 5%-8% of women) - so you and your doctor might not recognize it at first - especially if you haven't recognized its pattern. The diagnosis of PMDD is actually made using the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). The main symptoms that distinguish PMDD from other mood disorders or menstrual conditions is when symptoms start and how long they last. If you are not sure if you have bad PMS or PMDD, know that PMDD symptoms are not “occasionally bothersome”.
"They are downright disruptive, hijack your life, sabotage relationships, and make it really difficult to function." - Dr. Brighten
When I finally learned about PMDD (and did my own research) it was like the skies opened and a light was shining down...this.. was exactly.... how I was feeling. Explained. Clear as day. I hope that if you are (or if you know someone) having extreme, irrational, emotional premenstrual symptoms that last 7-14 days you know that it is NOT NORMAL and it is a real thing and you can treat it. The International Association for Premenstrual Disorders (IAPMD) says that 1 in 20 women are diagnosed with PMDD and 30% of those women will attempt suicide. So what is PMDD? IAPMD defines it as:
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and subsiding within a few days of menstruation. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. It is a suspected cellular disorder in the brain.
Marked affective lability (e.g., mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection)
Marked irritability or anger or increased interpersonal conflicts
Markedly depressed mood, feelings of hopelessness, or self-deprecating thoughts
Marked anxiety, tension, and/or feelings of being keyed up or on edge
Decreased interest in usual activities (e.g., work, school, friends, hobbies)
Difficulty concentrating, focusing, or thinking; brain fog
Lethargy, easy fatigability, or marked lack of energy
Changes in appetite, food cravings, overeating, or binge eating
Hypersomnia (excessive sleepiness) or insomnia (trouble falling or staying asleep)
Feeling overwhelmed or out of control
Physical symptoms such as breast tenderness or swelling, joint or muscle pain, bloating or weight gain
A diagnosis requires at least five of the above symptoms to be present, including one of the "core emotional symptoms" (in bold). I was experiencing 9 out 11 of these, including all of the core symptoms for my entire luteal phase, and then they would dissipate after the first day of my period.
I had to advocate for myself for a few years to figure out what was going on and how to manage it. I had to make the decision to talk to someone, I had to beg the doctor to help me just to get a referral to someone else, I had to come to the conclusion myself to take my IUD out because the doctor told me that it didn't have anything to do with my symptoms, and I had to make the decision to not take the antidepressants and birth control as treatment and try what was right for me first. You have to do what feels right for you. This whole experience has made me so much more in tune with my body all because I decided to start listening to it.
Do you experience signs of PMDD? What is your story and how do you manage? What has helped you?