“I wouldn’t wish this on my worst enemy.”
Many of us experience cramps, mood swings or discomfort during our periods – with up to 85 per cent of us experiencing PMS , but for women living with PMDD these symptoms can control their entire lives
Premenstrual dysphoric disorder (PMDD), affects between three and ten per cent of menstruating women worldwide. Gynaecological Endocrinologist Doctor Anna Fentonn described PMDD as “a severe form of PMS accompanied by predominant and severe mood changes.”
Dr Fenton said women suffering from PMDD are also more at risk of other illnesses. These include bulimia and hypertension and one of the main problems for women was being misdiagnosed.
“Often it takes women three to five years to be diagnosed – there’s a perception that it’s all in women’s heads, often we find that family members aren’t very tolerant [of PMDD] because they don’t see it as a real problem.”
To find out more about PMDD and the struggles faced by women who are suffering we asked four New Zealand women who are living with the disorder to recount their personal experiences.
“PMDD often makes me feel like a different person.”
“To an extent I think I’ve always experienced PMDD. For a few years it was masked by hormonal contraceptives, but when I came off the hormonal contraceptives three or so years ago I definitely noticed these extreme moods I would get right before my period comes. For me PMDD affects me in such an extreme way that I often feel like a different person during these times. I can swing from extreme anger and frustration to extreme sadness often resulting in hysterical uncontrollable crying.
I absolutely dread the week I expect PMDD to hit as I know I’m going to isolate myself as I’m scared of saying something I’ll regret to my husband or friends. [During this time] I can’t stand to be around people because it often results in me feeling extremely overwhelmed.
I always thought these extreme mood changes were normal. You often hear people talk about premenstrual stress and how it makes them moody – what I didn’t realise is that while mood changes are normal, the extremes that I was having were not. I feel like my symptoms are managed a little better now with the antidepressant [Sertraline] I am on, and while this helps keep me a little more stable, I still dread that week. I saw multiple doctors who I tried to discuss these extreme mood changes with and they never suggested it could be anything other than PMS. Eventually I found an amazing doctor who has supported me right through.”
Advice to others:
“Don’t just accept the mood changes as normal. Especially if they begin to impact on your life and relationships with others. People often joke about how crazy women can get during our periods. For me it took seriously wanting to harm myself to realise something wasn’t right. If there’s any doubt in your mind please bring it up with your doctor. Even if you have to be straight forward and say you’ve heard about PMDD and you believe you experience some symptoms, and know that it can be treated and you’re not alone.”
“I wish people knew what PMDD was like – it’s not just cramps and moodiness.”
“Having PMDD is HELL, that’s how I would describe it. You have one good week out of the month and sometimes that one “good” week isn’t even that good. Personally, I experience anxiety, fatigue, muscle aches, tender breasts, nausea, frequent restroom trips, depression, headaches, migraines, horrible cramps, increased appetite, decreased appetite, happy, mad, sad…. must I go on? It’s like PMS on steroids! There are SO many symptoms and I’m actually still developing new ones as the years go on.
I was diagnosed [with PMDD] when I was 20 – so three years ago. [At the time] I didn’t know what was wrong with me. My periods were lasting seven to twelve days and I just didn’t feel good at all! My gynaecologist diagnosed me with PMDD and I had no idea what the heck that was. After weeks and weeks of studying and googling and researching I still didn’t understand this whole PMDD thing but I knew I had to live with it. As the years go on it just gets worse. I’ve never had bad anxiety like this before and I can tell you exactly where I am in my cycle right down to the T! It’s crazy. Everyone blows it off as PMS or I’m being a baby, I’m not though! It’s really horrible and I honestly wouldn’t wish this on my worst enemy.
I have people tell me to take over the counter meds or get birth control or do this and do that! None of that works [for me], none. It’s taken a toll on my life and it’s so hard to get through the rough days. I do though, I am a PMDD warrior! I wish people knew what [PMDD] was like. It’s not just cramps and moodiness its way more than that. It basically takes over your life. Us women with PMDD aren’t faking anything and it’s a real sickness!
Advice to others:
“Definitely join a group. It may sound cliché but talking it out is the best. Having other ladies who have the same illness as you can definitely help you.”
“I think there’s still sexism in the medical industry that women make hysterical choices.”
“A lot of the symptoms were in retrospect and it began when I first got my period at 13. I remember getting really bad mood swings on a consistent basis. I had really severe emotional symptoms. At the time I assumed it was just normal PMS plus just being a teenager. I would go between feeling fine to really hopeless, anxious and angry. Getting diagnosed was a really long process – I was diagnosed in 2016 when I was 33. I was misdiagnosed over and over again. A lot of the symptoms I had were confused as being depression. I was put on antidepressants to manage it, but my moods just got worse.
When I was 21 I attempted suicide and used drugs and alcohol to supress my symptoms. I saw therapists and at one point they questioned whether I had bipolar disorder. As I got older the symptoms got worse, 14 days out of the month I would turn into a different person. By the time I was diagnosed I only had about seven days out of a month where I wasn’t experiencing symptoms. I have two girls who are five and three and after pregnancy I began getting physical symptoms such as – joint pain, fatigue, a foggy mind and headaches. The biggest thing was the foggy mind – I’m a social worker and it was getting harder and harder to manage tasks and I started wondering what was going on. I started googling my symptoms and I came across a diagnostic manual of the symptoms of PMDD.
In June 2016 I got sober and decided I wanted a hysterectomy at 33. I saw a gynaecologist and told him my symptoms and mood diary and he said it sounded like PMDD. He put me on an injection that closes down the ovaries for three months. He said if the symptoms stop I have PMDD. The injection was like a miracle, they symptoms were gone. When I walked in there I was suicidal every month – it was a very dark time for me and my family. After three months he said it was PMDD and I could have one more injection but no more after that due to the long term effects. My doctor then agreed to a hysterectomy and oophorectomy. My husband and I wanted a third baby but I was pretty worn down so I decided to have the operation. I had it in March 2017 and my life has completely changed. Now it’s gone it’s a whole new world.”
Advice to others:
“Get online. Join support groups – there’s online communities and they’re a lifesaver. I’d also recommend keeping a mood and symptom diary. It’s all about advocating for yourself. There are even apps for your phone you can use to track your menstrual cycle. Also to any women who have been suffering for many years – seek help for any addiction, you have to remove it to see the issues underneath.”
“When I was younger I had no idea what was wrong with me so I used alcohol to cope.”
“PMDD is not to be taken lightly. It’s a horrible hormonal disorder that affects every aspect of your life. Finding help for it has not been easy for me. I’ve had it my whole life and when I was younger I had no idea what was wrong with me. I used alcohol to cope and some mild drugs like marijuana and Valium. I realised that I had PMDD when I was 25 and I was prescribed antidepressants, sleeping pills, anxiety pills, none of which helped much. Then I started getting really sick so I went on Prozac for five years with slight improvement. I was also using bio identical Progesterone cream at the time which helped me for a few months but then made me worse on and off for five years. Now since stopping it completely four years ago I have been sick with adrenal fatigue symptoms but when I try use anything to raise my Progesterone levels it makes me worse.
My PMDD can make me aggressive which is very scary and I have nothing I can take to help me with that. It’s a nightmare to live with – I’m Chronically unwell as it is and this makes things worse. It’s hard on anyone in my life because I don’t trust [them] I get paranoid and I turn into a monster. I’m usually a loving kind caring person but [PMDD] turns me into a paranoid, anxious, depressed, irritated mess. I’ve spent thousands of dollars on supplements and done research nearly everyday since I was 25 on how to try get well. You basically go insane like you seriously go crazy at PMDD time – you get very irritated, angry confused, think everyone is against you, depressed, suicidal etc.
Advice to others:
“Get out and get as much vitamin D as you can from the sun. Sit outside with feet flat on ground for at least 20 minutes a day, grounding yourself. Tell your mind that you are well calm and happy as a mantra even when you are not. Be creative, do art and crafts, write and sing, play instruments, do gardening, do anything positive to keep your mind busy and distracted from it. I have a support group on Facebook if anyone ever wants any suggestions or support.”
Where to find support and resources for PMDD:
*Some names have been changed to protect privacy.