Premenstrual dysphoric disorder (PMDD) is a serious health condition that affects women physically and mentally.
It can result in the breakdown of relationships, the loss of employment and in severe cases even end in suicide.
“The Global Survey of PMDDs 2018 showed that 30 per cent of those experiencing the condition have made a suicide attempt during a PMDD episode. Shockingly, patients also waited an average of 12 years for an accurate diagnosis”.
According to Monash University PMDD affects approximately 3 to 8% of women. If you suffer from a variety of severe symptoms leading up to your period that you just put down to regular PMS, you too could be suffering from PMDD.
PMDD symptoms vary between patients but can include:
- agitation or nervousness
- crying spells
- feeling out of control
- loss of interest in activities and relationships
- panic attacks
- thoughts of suicide
- food cravings or binge eating
- trouble sleeping
- economic or social dysfunction due to symptoms
- feeling overwhelmed
- increased sensitivity to rejection
- lack of concentration
- self-critical thoughts
- back pain
- breast swelling and tenderness
- gastrointestinal issues, including constipation, diarrhea, nausea, or vomiting
- heart palpitations
- appetite changes
- water retention
- hot flashes
- vision changes
- allergies and infections
- easy bruising
- weight gain
- joint or muscle pain
- muscle spasms
- painful periods
- reduced sex drive
- pelvic heaviness or pressure
- numbness, prickling, tingling, or heightened sensitivity of arms and/or legs
- diminished urine output
Jannah’s Experience With PMDD
Realising I Had PMDD
“I always struggled with my emotions around the time of my period, but I never really noticed it that much until year 12, I started to get really manically sad and depressed around that time of the month. I would go silent and not understand what was happening, I was just constantly in my head overthinking everything. Looking back, when I was younger, I had an eating disorder and I think that that may have thrown out all of my hormones, that and going on the pill without eating, I think all of it was too much for my body.
On the days leading up to my period I would just be like a completely different person, I am usually a really confident person but during that time I wouldn’t be able to leave my mother’s side. There was an incident where I yelled at a teacher and I’ve never yelled at anyone in my whole life, I ran out of school in the worst state. And then the next day I got my period, I felt so much better and was like, who was that person? I felt like maybe I had bipolar. One night I reached breaking point, I drove somewhere and just sat in my car, I didn’t know what to do, I was so conflicted and felt so out of control. Then one night I happened to be listening to Triple J and they were talking about PMDD, and I was like, this is exactly how I feel! After that I left it for a bit, unsure of if it was what I had.”
Reaching Breaking Point and Getting a Diagnosis
“At the beginning of the year, the pain started to become physical. I was constantly in pain from being so stressed and tensed up. I went to my GP and got it checked out, she diagnosed me straight away and put me on antidepressants which I tried but had a really bad reaction too, they made me physically sick.”
Treating My PMDD
“After my experience with the antidepressants, I tried a few different methods to control my symptoms. My doctor suggested that I try using the pill to skip my period to also skip the PMDD symptoms but that didn’t work either, I didn’t get my period, but I still got all of the PMDD symptoms. I went to a counsellor to try and talk about how I felt, I did lots of yoga and meditation. None of that really worked out for me so I went back to the GP and she put me on a different antidepressant which I am still on and at the moment that seems to be working for me.
PMDD has really affected my sex life, I haven’t been able to have sex now since my last episode, as well as having no sex drive, I built my pelvic floor up to tense all the time, I can’t fully relax it. It is so painful that when I try to have sex, I just cry from the pain. I am getting a lot of help with it now; I have seen a gynaecologist who gave me an antidepressant cream to use and I am also seeing a physio as well which has been amazing and so helpful. I also journal a lot and I am part of a PMDD Facebook support group which I find really helpful.”
Fiona’s Experience With PMDD
Finding Out I Had PMDD
“One of my best friends had actually suffered from PMDD and then after the birth of my daughter I started to experience symptoms, I didn’t have anything noticeable beforehand as much, but I had a lot of health complications while I was pregnant and then afterwards as well. I found that PMDD was one of the things that started to become apparent.
My PMDD Symptoms
“I was finding it very hard to maintain any sense of routine in my life with PMDD. I would find that I was really productive for half of the month, I was organised and positive and happy and everything was running smoothly but then for the other two weeks of the month I would just have this rage, I was very snappy, it was this very Jekyll and Hyde kind of thing.
I couldn’t maintain consistent work or employment, my family life was definitely struggling, I was very moody. I would experience this rage that I can only describe as blood rising and intense pressure in your head, it was a constant feeling of irritability, anxiousness, unease and very uncomfortable in your own skin. It got to a point where I was able to clearly identify it from day 14 at ovulation until my period, it was like my alter-ego would come out and I’d become this other person. I had no control over it, I would become impulsive, very brazen, have not a lot of awareness, I would say inappropriate things, drink too much. It was very disconcerting for the people around me, I felt like a loose cannon. Sometimes I would sink lower and feel depressed but mainly I was very overt and impulsive. I’m not a runner but I felt the need to run and exercise and get away from everyone.”
Treating My PMDD and My Hysterectomy at Thirty-Five
“I actually ended up having a full hysterectomy. When I started seeing my OBGYN I had this innate feeling that this is what would fix me. My body just went haywire after I was pregnant, I was on the pill from 15 to 25 and then when I went off the pill at 25 things did not go well for me at all. I was getting all sorts of health problems, migraines, glandular fever and chronic fatigue type symptoms, weird autoimmune disease symptoms that no one could work out. When I look back at it, whatever it was it was obviously all hormone-driven. I had four miscarriages and then I had my daughter, it was a pretty bad pregnancy and then I was really sick after, suffering from adrenal fatigue. Then I developed Polycystic Ovarian Syndrome as well, I’d get very large, orange-sized cysts that would rupture every month, they removed half of an ovary and then I had scarring, adhesions and chronic pain, it was just a mess, plus the PMDD. I just knew it was my reproductive system.
My doctor was sceptical about me having a hysterectomy, I was in my early thirties, I had one daughter, I was divorced and in a new relationship, with someone that wanted babies, but I knew that I couldn’t go through another pregnancy. My doctor took a lot of convincing, I would call his assistant and be like please tell him that I am crying again, I just looked at him in the end and said ‘come on its time, I’ve done my due diligence, it’s time.’
He said ok let’s put you on the hormone blocker which definitely made things better. For me in the past some doctors tried to put me on the pill all the time, I was on progesterone one summer and I almost drove my car into a poll I got that much rage build up. You can’t tell if it’s the one hormone-like progesterone or if it’s the fluctuation of hormones, I know now that mine is a fluctuation.
I spent a lot of time on PMDD hysterectomy support groups for a couple of years which was good to learn about other women’s experiences. So, the blocker went well and then I had to go through the chemically induced menopause for 6 months and then trialling a lot of estrogen which was a bit of a disaster because you’re so up and down for 6 weeks and then went straight to trying IVF which was horrific because it was the opposite, and then went straight into surgical menopause, it was a really full-on 12 month period.
I woke up from the operation and I was so happy and positive, it was a real sense of calm, I could hear myself think, I wasn’t fighting an internal monologue anymore.
Given my long history of medical problems, it went from the age of 25 to 35 and those are supposed to be a really good time in your life but for me it was horrific. Through all of that and my career as a nutritionist, I developed an interest in women’s health and hormones. I always refer to what I call spinning plates with hormones, once one goes, they all go and trying to balance them all is really difficult particularly when you’ve got a fluctuating cycle, which a lot of women do. Horrific PMS, pain, where so normalised by thinking it’s just the curse of being a woman, but it’s not normal and it shouldn’t be that way.
I was really lucky that I was able to have the hysterectomy as it’s not the norm yet, I’ve seen people in the group just begging for them. I feel like my life started at 35, I wrote my doctor a card saying, ‘you changed my life’.”
After our conversation, I opened up to Fiona about my own struggles with my health and being passed around to different specialists without ever getting a diagnosis and she recommended that I try an Integrated Medicine Doctor, who she credits for saving her life, these Doctors can be found through ACNEM.ORG.
Dr Joseph Sgroi – Obstetrician Gynaecologist Fertility and IVF Specialist
The Cause of PMDD
“It’s not fully understood but what we do know is that in women, it is likely that there is actually a dysregulation in the neurotransmitters particularly related to a hormone called serotonin in the brain and the way that estrogen impacts that particular hormone and those receptors. It was thought that perhaps it was to do with changes in hormones but in actual fact, the hormone levels of both progesterone and estrogen are pretty much identical in women who have these cyclical changes so that doesn’t appear to be the sole cause, it may be in some women but largely it is an abnormal response to those fluctuations in hormones, particularly the serotonin.”
PMDD and Eating Disorders
“There is a known link between PMDD and mental health issues, particularly anxiety and depression and I suppose being a mental health condition as well, eating disorders and the heightened level of anxiety that that brings with it, it would be one that would predispose women to PMDD as well.”
PMDD and Suicide
“If you look at specifically what the diagnosis of PMDD is, it is actually a diagnosis that is not a gynaecological one really, it is a psychiatric one so it’s a diagnosis that includes one or more of the following symptoms, mood swings, sadness, increase insensitivities, rejection, anxiety, hopelessness, depressed moods, self-critical thoughts, irritability, tension, all of those symptoms, really are someone who potentially is suicidal. A part of it is knowing that you do have it and it is a cyclical nature so in two weeks’ time hopefully, you will feel better but that is not the issue, the issue is if you are so depressed and have such a sense of hopelessness then, of course, you could imagine there would be an increased risk of suicidal ideation and then acting on that.
“The standard algorithm would be to consider is this having a significant impact on the quality of this woman’s life and obviously she wouldn’t be presenting unless it was. There can be general lifestyle measures that need to be taken for example exercise, reduction of stress, cognitive behaviour therapy, acupuncture, that may be all that is requires but if it is having a significant impact on the quality of the patient’s life both personally and socioeconomically then you would consider some form of treatment. In that case, the trail could be initially starting with the combined contraceptive oral pill and taking that continuously, not having a break, so stopping the periods, in some cases that will give symptomatic relief.
In other women, it may not necessarily be the panacea in which case you would consider utilising and antidepressant because we know that the antidepressant, even if it’s taken in the last part of the menstrual cycle can have benefit in reducing symptoms.”
What Should You Do If You Think You Have PMDD?
“Touch base with your general practitioner in the first instance and if they are unable to help you then getting a referral to a psychiatrist and or a gynaecologist may be of benefit in this regard particularly in relation to providing you support. It’s important not to feel like you are vulnerable and that no one else can help you because there is a team of professionals who can do which include, General Practitioners, Psychologist, Psychiatrists, Gynaecologists and Alternative Health Practitioners, they can all provide assistance in order to get you through.”
Help Is Available
If you are struggling, there are a lot of recourses available to provide assistance:
IAMPD is an organisation dedicated to supporting women with PMDD, as well as providing a vast range of information they also have links to a variety of Facebook Support Groups set up by women with PMDD to provide encouragement and assistance to each other.
- Lifeline – you can call Lifeline for support at any time on 13 11 14, text on 0477 13 11 14 or live chat here.
- Beyond Blue – you can call Beyond Blue for support 24 hours a day, seven days a week on 1300 22 4636, live chat here or access their forums here.
- You can hear Fiona talk about her struggles with PMDD on Yumi Stynes’ podcast Ladies, We Need To Talk here.
- If you would like to listen to the Triple J podcast that Jannah mentioned you can find it here.
To find out more about the amazing Dr Joseph Sgroi, follow him on Instagram here.