A little-known hormone-related condition affecting up to 8 percent of people with periods is sometimes mistaken for bipolar disorder and incorrectly treated. Farah Hancock reports.
*Warning: This story contains references to self-harm and suicide*
Lisa* is fighting for her life. She desperately wants to live but her body’s reaction to hormones makes it a battle.
Just before her period she plunges into a suicidal depression. What starts with feeling a bit teary one evening develops into days of what she describes as the deepest depression imaginable, and it continues for four to seven days from when her period starts.
“There’s depression, extreme thoughts of suicide, I’m crying a lot, I can’t look at other people. I don’t want to be around people.”
If she’s not at work, she’s in bed. If she is at work, she’s thinking of “novel ways to kill myself”.
Lisa doesn’t just have a nasty case of PMS. She has a condition called premenstrual dysphoria disorder, a recognised mental health condition. Her hormone levels are the same as other people, but her body’s response to the hormones is very different. When oestrogen levels plummet so does her mood.
The catch is that when it happens, she doesn’t recognise it for what it is and doesn’t seek help.
“It feels so normal. It seems absolutely logical, rational, justifiable that I suddenly feel extremely depressed and want to kill myself.”
She’s trying various treatments and recently opened up to friends about her condition and explained the warning signs. She’s begging them to call the police or the “white coats” if they suspect she’s a danger to herself. She would rather be committed than dead.
“If I’m hospitalised, or tied to someone’s fridge … if I’m being watched – then I can’t do it.”
However, there’s a risk her condition might get misdiagnosed. Premenstrual dysphoria disorder (PMDD) affects between 3 to 8 percent of people who have periods but it’s not widely-known. It can cause anxiety, rage and suicidal thoughts. In the 10 or so years prior to menopause, when hormone levels tend to be more erratic, the symptoms can become more severe. The lack of knowledge around the condition means it sometimes gets incorrectly diagnosed as bipolar disorder.
This happened to Sarah*, who attempted suicide during a bout. She was taken into police custody and spent a night in a holding cell. A psychiatrist from the hospital brought in to give an urgent assessment diagnosed bipolar disorder.
At this stage, Sarah had already been diagnosed with PMDD. She was released after her duty solicitor got in touch with her GP.
Oxford Women’s Health’s Dr Anna Fenton is a gynaecological endocrinologist. She’s seen the wrong diagnosis made before.
“I’ve certainly seen a lot of women spend time in psychiatric hospitals because they’ve been misdiagnosed with rapidly-cycling bipolar disorder or something like that.”
A wrong diagnosis can mean a prescription of drugs that aren’t necessarily effective for PMDD.
“That’s obviously been quite distressing because they ended up being on all sorts of heavy-duty psychiatric drugs that perhaps wouldn’t be needed.”
The treatment approach can also be a postcode lottery.
“Depending on where you landed psychiatrically, the approach would be different. In some situations there may be an immediate move to sedatives and anti-psychotic drugs. In other centres there would be a more hormonal approach.”
In Christchurch, where Fenton is based, she said psychiatrists were generally aware of the condition and “ask all the right questions when they’re seeing women of the right age”.
There’s also work to raise awareness with GPs. However, Fenton said often it’s patients who bring the diagnosis to GPs after researching their symptoms online and realising what they are experiencing goes beyond typical PMS symptoms.
“I think generally – not only in New Zealand – it’s written off as being part of a woman’s lot.”
She explained that during a normal cycle, oestrogen levels peak during ovulation and then free-fall. The drop in oestrogen is thought to be a trigger for PMDD. The drop leads to changes in brain chemicals, including serotonin – commonly known as the ‘happy’ chemical.
“There are changes in these women’s brains that are very similar to what we see with a major depression or even a psychotic episode.”
There are two main ways to treat PMDD. One path tackles hormones, the other mood.
Treating the mood can help ease people through the symptoms. To date, the treatment used has been prescribing SSRIs (selective serotonin re-uptake inhibitors), a group of antidepressant drugs similar to Prozac. For PMDD, research has shown these can be taken just at the danger times, rather than continuously.
Cognitive behavioural therapy can also be useful as part of a treatment strategy.
There are several options for managing hormones, and most are based on stopping ovulation.
Yaz, a contraceptive pill, which has fewer sugar pills than the normal pill and is the only one with research backing its effectiveness. Fenton said for most patients visiting a doctor, this was the standard treatment given. As Yaz isn’t subsidised, this is a $25 per month outlay and is not effective for all women.
“I think we’re beginning to understand that the contraceptive pill doesn’t completely suppress the hormone swings that are going on in the background. Even the most minor blips in hormone production, while a woman is on the pill, are enough to still create these symptoms.”
Fenton has been researching Cyproterone, a drug which prevents ovulation. She says it smoothes out hormones to a greater degree than the contraceptive pill and is helping around 90 percent of patients who try it.
“We use that with a bit of low-dose, plant-based oestrogen and then that can be incredibly effective.”
For severe cases there’s Zoladex, a pellet that is injected regularly. This has a side-effect of creating menopause-like symptoms.
“It puts the ovaries into a medically-induced menopause. They basically just go into hibernation, so everything shuts down.”
Finally, there’s the option of surgery to remove the ovaries. Fenton said while patients might think this is an easy option, it’s her last line of defence for when other treatments haven’t worked as there are consequences of early menopause – which then need to be treated.
One of the key messages Fenton would like to get across is that there are treatment options available.
“Yes, we can make a diagnosis – and we can do something about it.”
*Names have been changed.
Where to get help
1737, Need to talk? Free call or text 1737 any time for support from a trained counsellor
Lifeline – 0800 543 354 or (09) 5222 999 within Auckland
Samaritans – 0800 726 666
Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
What’s Up – 0800 942 8787 (for 5–18 year olds). Phone counselling is available Monday to Friday, midday–11pm and weekends, 3pm–11pm. Online chat is available 7pm–10pm daily.
Kidsline – 0800 54 37 54 (0800 kidsline) for young people up to 18 years of age. Open 24/7.
thelowdown.co.nz – or email email@example.com or free text 5626
Anxiety New Zealand – 0800 ANXIETY (0800 269 4389)
Rural Support Trust – 0800 787 254 (0800 RURAL HELP)
Supporting Families in Mental Illness – 0800 732 825