P-M-S. We all know what that stands for, and so do those around us. But what if leading up to that time of the month, you're suffering from panic attacks, mood swings, frequent crying, anxiety, despair, or even thoughts of suicide? Enter premenstrual dysphoric disorder, otherwise known as PMDD. Laura Murphy, Director of Education and Awareness at the International Association of Premenstrual Disorders (IAPMD) shares more about this condition, how to properly get diagnosed, and treatment options.
Georgie Kovacs: What is PMDD?
Laura Murphy: PMDD is a hormone-based mood disorder, but is not a hormone imbalance affecting one in 20 women and those assigned female at birth (AFAB). This is of the women we know because many will go misdiagnosed or undiagnosed. It's a severe form of PMS. The symptoms only occur in the time between ovulation and around the time of your period. People will often complain of PMS that makes them feel suicidal, or perhaps they're diagnosed with bipolar, that rapid cycling bipolar that kind of comes and goes.
Georgie Kovacs: Who tends to get PMDD?
Laura Murphy: We often see women who have a pregnancy or miscarriage who are then diagnosed with postnatal depression and that depression kind of keeps coming and going in waves and no words and kind of pick up the timing exactly the fact that the symptoms are ending around the site around the time of menstruation. Symptoms can worsen over time and or around reproductive events such as menarche (the first menstrual cycle), pregnancy, birth, miscarriage, and perimenopause. And I have to say, it affects everyone differently.
Georgie Kovacs: How is PMDD diagnosed?
Laura Murphy: There are diagnostic criteria, but we're really noticing how limiting they are. The main symptoms include depression, anxiety, feeling of being overwhelmed, changes in eating habits, so perhaps completely losing your appetite or overeating, craving certain types of food, panic attacks, suicidal thoughts for some people. Some people get rage and anxiety, but not everyone does. Some people also get physical symptoms such as bloating, leg pain or like heaviness, changes in sleeping habits. Some people get insomnia. I used to get hypersomnia, which meant however much I slept, it never stopped for fatigue. I slept for 19 hours a day and couldn't keep my eyes open.
All of these PMDD symptoms are contained within that luteal period, which is the time between ovulation and around the time of your menstruation. For some people, it goes the whole two weeks through, assuming a 28-day cycle. For other people, they may feel worse around the time of ovulation, and then it picks up a bit and then they know they go downhill.
Georgie Kovacs: What is your PMDD story?
Laura Murphy: My symptoms started at about the age of 16. I had a long depressive episode, and I was asked to leave school. Times were very different back then. There was no support. I was just asked to leave because I wasn't turning up, I wasn't getting involved. I wasn't committing to it. To be honest, that didn't help.
At 17, I took the contraceptive pill for heavy periods and on the day 21 when I skipped the sugar pills, I crashed and burned, and my life changed forever. On that day, I was on the floor hyperventilating. My first or full-on panic attacks, and then I went into a six months long depression.
For the next few years, I had longer periods of depression. I also knew I had very bad PMS, where it was a bit of a running joke with my female housemates at university that I could be a bit scary when I had PMS, but it was a long standing joke rather than a concern. My partner at the time even said it's like living with a different person for a week a month.
I was eventually given the Mirena IUD, and it did help for a little while. I had no periods, I went and backpacked. However, I think the progestins built up in my system, and I just had a crash where I had what was basically PMDD symptoms for 18 months straight. I was suicidal every day, and I had to give up work. It was probably one of the worst times of my life.
Georgie Kovacs: Did the Mirena IUD potentially trigger or exacerbate these PMDD-like symptoms?
Laura Murphy: I started Googling “Mirena depression” and finding some things coming up on forums. I went to my doctor and suggested that the Mirena and my mood might be linked. She'd been really good leading me through the devastation. However, I was told, "No, the hormones in the brain can't do that. It doesn't travel outside your uterus. It's all very contained. Don't believe everything you read on the internet."
Georgie Kovacs: How did you finally get diagnosed with and treated for PMDD?
Laura Murphy: I paid privately to have therapy weekly, and she was amazing. She said, “You know, this isn't a PMS like your doctor is saying, but this isn't it.” That was 17 years into my journey.
I found out about an amazing doctor in London, Dr. Panay, who's now on IAPMD Clinical Advisory Board. It turns out I'd already gone through some of the first line treatments, so we decided to remove my ovaries. So I had a total hysterectomy with bilateral oophorectomy. And so I was in surgical menopause at the age of 37.
Georgie Kovacs: You seem to have taken this rough journey, which I am sorry about, and transitioned into helping other women with PMDD. Tell us about that.
Laura Murphy: I started a patient awareness campaign, Vicious Cycle, because everyone was saying the same thing - "I'm going to my doctor, they don't know what it is. I've been undiagnosed for, you know, 10 years, 15 years. 20 years." People were going to their doctors, they're being gaslit, they've been turned away. We started this patient education campaign, Vicious Cycle, and through that I just connected with so many amazing people around the world.
Around the same time, I was working with Vicious Cycle, and I ended up joining the Board of Directors, and I have been working with them since.
Georgie Kovacs: What a story, and I am really sorry for everything that you have had to go through. I appreciate the courage that you have to continue to help other women. As someone is seeking treatment, how, in the meantime, do you recommend they work through the emotional roller coaster that comes with PMDD?
Laura Murphy: It's completely okay to take responsibility for how you're feeling. There's so many of us that are on that kind of difficult path, kind of weaving through and trying to get a diagnosis and trying to find the treatment and trying to find the answers.
Self-care is important for PMDD patients - yoga, meditation.
Georgie Kovacs: How does someone with PMDD get diagnosed? Some of the symptoms overlap with so many other conditions like endometriosis and Hashimoto’s.
Laura Murphy: PMDD tends to be like a light switch for people or a fade. During your follicular phase, you feel great, and then when ovulation hits, it's a tipping point where things tend to get very dark for people. They get very anxious and rage-y. When the bleeding starts, people describe it often as like a black cloud lifting and that's exactly how I used to be. I remember sitting on the toilet and seeing blood and within two hours just literally feeling like this kind of veil of weight just lifted from me.
With PMDD, the symptoms are predominantly psychological, but some people will have physical pain. It's not related to heavy periods; it is not related to period pains. It's an issue in the brain. Research suggests a genetic malfunction in the brain where the brain cannot handle the normal hormone fluctuations of the sex hormones that occurs in the luteal phase every month. Often it's misdiagnosed as bipolar rapid cycling bipolar.
Georgie Kovacs: Is there blood work available to diagnose PMDD?
Laura Murphy: Blood tests are done to rule out other conditions such as hormone imbalance or a thyroid condition, which is often a problem for practitioners who don't know about PMDD.
What is currently used for diagnosis is historical tracking, which means a minimum of two months of careful tracking of your daily symptoms, hopefully speaking to a provider that understands PMDD and can see the clear pattern that PMDD exhibits because there's also, confusingly, premenstrual exacerbation (PME).
PME symptoms are depression for long periods - four months, five months, six months longer - during the whole cycle. In the luteal phase, coming up to their period, their symptoms are worse. This, however, could be the case for many disorders such as arthritis, ADHD, OCD, bipolar. Thus, it can be kind of hard to pick apart the two. We would always recommend people see a provider that understands the conditions and can kind of pick apart that information that you've prepared for them.
Georgie Kovacs: To summarize, it's almost a diagnosis by exclusion of other conditions.
Laura Murphy: Yes, by ruling out, but also seeing that the patterns you're exhibiting match that condition.
Georgie Kovacs: Who tends to be predisposed for PMDD? Who gets PMDD?
Laura Murphy: There was research published in 2017 where they found a genetic malfunction. They compared white blood cells between those who had PMDD and those that didn't, and they found a difference in the pathways of your hormonal regulation in the brain during the luteal phase.
There has been some research done about trauma in childhood. That seems to be a very common factor - any different kind of trauma, neglect, sexual abuse, but that's not everyone.
Georgie Kovacs: What triggers PMDD and its symptoms?
Laura Murphy: Some people have it from their first period. Some people may have no symptoms or just PMS-like symptoms until they have a pregnancy. Some people find that it worsens with each child. For some people, it can be a termination and miscarry. It can be taking a certain type of medication. It can be a very stressful event.
It's not quite as easily understood why it gets triggered along the reproductive pathway, but not everyone has it from a teenager. It's common, but not everyone does.
Certainly, we see people where the hormones start jumping up and down faster, and during perimenopause, we definitely do see people struggling more.
Georgie Kovacs: What are current treatments for PMDD?
Laura Murphy: IAPMD has treatment algorithms because there's no one size fits all. It is trial and error. The most effective treatment we currently have for PMDD is SSRIs. They work really well for approximately 60 to 70% of people. Some people take them all month round. Some people take them for two weeks and other people can use them just when symptoms are present. They work differently for PMDD than they do for depression. They don't take two weeks to kick in.
There's also the contraceptive pill. Yasmin, in America, is the only one licensed for treatment of PMDD. For PMDD, the idea is complete cycle suppression. You don't take the sugar pills so there is no bleed, no fluctuations. Some people find that they do better on different pills. Some of us, like myself, can’t tolerate any of the contraceptive pills.
For perimenopause, I think it's a bit different. We're just launching a page on PMDD and menopause. One of the things I read was, yes, that HRT can be really useful. It can kick in quite quickly for people in perimenopause with PMDD along the lines of cycles, depression.
In the UK, we have official treatment guidelines from the Royal College of Gynecologists and Obstetricians. So we have guidelines here. Not yet in America, sadly, or Canada.
Georgie Kovacs: What should those of us not in the UK and who don’t have guidelines for doctors to treat PMDD do?
Laura Murphy: I would say anyone with PMDD should print off everything they can get their hands on. On the IAPMD website, we have a free download for medical professionals of the algorithm. We are launching a patient's walkthrough of treatments. There'll be an algorithm and a breakdown of each of the treatments - what to expect, how many people it works for, efficiency, potential side effects, when do you know when to stop.
Georgie Kovacs: How quickly should a PMDD treatment work? And does it depend?
Laura Murphy: It depends on the treatment. SSRIs work pretty quickly for those with PMDD, but that's if you get the right dose and the right type of SSRI. Things like hormone therapy and hormone replacement therapy can be really difficult for those with PMDD because you're having a surge into your system, and if you're very sensitive to any changes. In the UK, there's another step - hormone suppression using HRT. Instead of using the pill to suppress that cycle, they use HRT methods.
Georgie Kovacs: What if the treatments for PMDD you mentioned don’t work. Then what?
Laura Murphy: I also don't want it to be the voice of doom and gloom. I know plenty of people that have been diagnosed and started a treatment and done really well. And off, they go, they disappear. They go and live their life. And you know, it doesn't have to be a life sentence.
There's plenty of us that, unfortunately, haven't reacted to the treatment... haven't, you know, responded to the treatment that's currently available and had to have surgery. But that is very much the end of the road for people. I think people panic a bit. They think hysterectomy is the cure. As you heard, there's so many things to try before then. Just be comforted that there's a really amazing community around the world, people who will listen and understand and help you.
Georgie Kovacs: How should women who suspect having PMDD or are struggling to find a treatment view what social media says about it?
Laura Murphy: We are not the PMDD police. We're not going to tell people what to do. We want to inform people with evidence-based resources. Our goal is to inform them and help them on that journey through the treatments that are currently available.
As for social media, we'd always say to people be very mindful of who you're seeing as a provider. Personally, I would be very wary of anyone that offered a cure. There's plenty of people popping up on social media now who claim they can cure your PMDD. Check their credentials and their training before moving forward with it.
Interestingly, during our recent and world's first PMDD Community Coalition, something that came up as an area of interest research was antihistamines. So stay tuned as we look into that.
I think the only other thing I would say is just know your own body. I learned after I had the Mirena out that lots of people with PMDD have progesterone intolerance. That's not the case for everyone with PMDD.
Georgie Kovacs: How can women find the right PMDD doctor?