Bleeding out of your vagina every month is an inconvenience most women could do without. Unless, of course, you're a girl who prays for her period—and not because you think you're pregnant.
For some women, the onset of blood signals a relief that only comes once a month; it's a temporary end to the anxiety that makes them vomit up the food they've binge eaten or have panic attacks in the disabled toilets. Their period means that they don't have to stand on the subway platform every night fighting the urge to jump.
You probably haven't heard of PMDD, or Premenstrual Dysphoric Disorder. I hadn't heard the term either, until I came across it while investigating its mental health symptoms. But for a small community of sufferers, the extremes of the condition are enough to drive them to get a hysterectomy, surgically removing their uteruses as a radical solution—and women as young as 23 are looking to undergo the procedure.
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"I used to describe [PMDD] as being like Alice in the looking glass," Caroline Henaghan, a 36-year-old from Manchester, England told me. "I'm in the same situation but I'm two different people [...] Yesterday things were alright and today everything has fallen apart.
"I had anxiety, panic attacks, mood swings—early on I thought I was bipolar. For me, my coping mechanism during those two weeks of hell was to press my self-destruct button and let everything fall apart. Then the two weeks are over and you're left to pick up the pieces of not bothering, not caring and not being able to do anything. This is why PMDD is so debilitating."
What nearly all suffer from is debilitating depression and/or anxiety. Almost 15 percent of women with PMDD attempt suicide.
In simple terms, PMDD is like PMS plus: Seriously dangerous PMS that can start around the time of ovulation and finishes when you come on your period. Women suffer for anywhere between one week to two weeks a month, sometimes more. Physical symptoms include migraines, fatigue, finding things much too bright or too loud, forgetfulness, irritable bowels, and stomachaches. Emotional symptoms can be anything from irritability and extreme tearfulness to total self-loathing and binge eating.
But what nearly all suffer from is debilitating depression and/or anxiety. Almost 15 percent of women with PMDD attempt suicide. After getting to know the illness and its community of female sufferers, I can say with conviction that I highly doubt the accuracy of a figure that low.
Almost no one knows anything about it, including doctors. Mary Chadwick from Leeds, England, compared getting answers from GPs to banging your head against a brick wall. "I remember a doctor telling me, 'You don't have bipolar,'" the 45-year-old said. "I said, 'What is it then?! For two weeks of the month, I'm feeling seriously depressed and for the other two weeks I'm fine.' I think about it now and cannot believe it was not linked to hormones. I had to go home and type it in Google and scroll through pages and pages to eventually piece it together myself."
Many women don't know they have it or have been diagnosed with another mental illness. There are only a handful of specialists in the UK with PMDD knowledge. One of them is gynecologist Dr Nick Panay. "Many women are misdiagnosed as having bipolar disorder," he said. "Sometimes a combination of both PMS and a depressive, anxiety or psychotic disorder co-exist."
Despite the fact it affects up to eight percent of women, there is almost no research done on the illness. That percentage is the around the same figure as those who have diabetes—an illness that everyone in the western world, even children, have drummed into their heads. Millions of pounds has gone into research so that diabetes sufferers can now live normal, happy lives. But PMDD, the mystery killer, remains completely misunderstood.
"Old prejudices die hard," Dr Panay sighed. "Archaic attitudes exist not only in ignorant men but also in some women who only have mild PMS symptoms and cannot understand why other women cannot cope. These attitudes are prevalent not only in the public but also in the medical profession."
To most doctors and the general public, PMDD is invisible—or worse yet, a figment of the female imagination.
The medical establishment still doesn't know what causes PMDD. Worse still, no one is even agreed on whether it's a mental illness or purely an endocrine disorder. The DSM-IV defines PMDD as a "depressive disorder not otherwise specified." Some believe that it is a sensitivity to progesterone, the female hormone produced in the ovaries secreted during the second half of the menstral cycle. Other studies have shown a connection between PMDD and low levels of serotonin, a chemical in the brain that helps transmit nerve signals and regulates our moods and sleep patterns.
But to most doctors and the general public, PMDD is invisible—or worse yet, a figment of the female imagination. It might not come as a surprise that there's not much that even the most sympathetic doctors can do about it.
"You might be offered anti-depressants, hormone treatments, hormone gels, holistic therapies. I've tried everything," Chadwick said. While some treatments work for some women, using them on another seems to not work. "It's completely different for every woman, which makes it impossible to treat."
I interviewed dozens of women who told me that many treatments appear to work for a while and then lose effectiveness. You can work your way through the different options—but you'll probably find yourself at the most drastic solution: Removing your uterus and ovaries in two surgical procedures, known respectively as hysterectomy and oophorectomy.
While reporting this story, I was invited into several private Facebook groups by some PMDD sufferers. Women from across the globe talk, support each other and offer advice— there are four main online communities with around 200 to 3000 members, and some smaller groups. In the process of chatting to women in these groups, I really learned the truth about this last resort. I'd assumed only older women, who had started their own families and didn't want any more children, were going for the operation. But it wasn't—young women in their 20s and 30s, who have given up hope of ever recovering, are also opting for hysterectomies and ovarian removal.
A medical intervention can often be found, but hysterectomy and ovarian removal is life-saving for some women.
Henaghan had the op earlier in the year and explained to me why hysterectomy and oophorectomy was her only option. "That decision came about, as it does for all the women with PMDD, after trying lots and lots of different things and going back and forth to the [doctor] for years, desperately trying to make yourself understood," she said. "If I did try something and it worked for while, eventually it lost its effect and I was back at square one. The difficulty is every time you try something you have to wait a cycle or two or three cycles to see if there's any improvement. The added stress of having to do that for years really got to me."
Eventually, she saw one of the only PMDD specialists in the UK: Dr John Studd, a London doctor known as the "granddaddy of PMS." He recommended her for the procedure. "If even the big guns like Studd were saying hysterectomy and oophorectomy is only 'cure', then that's the only option for me now at 36," Henaghan said. "I'd rather have my life back now than keep trying and clutching at straws."
Dr Panay backs up her choice. "A medical intervention can often be found," he told Broadly, "but hysterectomy and ovarian removal is life-saving for some women."
For a long time I put off the decision because I was reluctant to take that final step. But I reconciled myself with the fact that I wanted to be well.
Henaghan—like many who choose to have the procedure—doesn't have any children. "I had always thought in my mid-30s I'd probably have them," she said. "But as time went on and I was getting worse, I made my own decision that I wasn't in a position to have children. I didn't think it would be fair on them. For a long time I put off the decision because I was reluctant to take that final step. But I reconciled myself with the fact that I wanted to be well and I knew the consequences."
Women in their early 20s told me that they were also on the waiting list for the operation. While I couldn't conceive of having to make the decision not to have biological children at that age, these girls—some as young as 23 or 24—were doing just that.
Elise McKenna Morgan from Seattle, Washington has been anxious and suicidal since the age of 16. The 25-year-old said that doctors had thrown every medication under the sun at her, but never mentioned anything about PMDD. She only discovered the term when her husband did some research into the condition. He advised her to keep a monthly diary of her symptoms and then go back to the doctors, where she was finally diagnosed.
One month into her marriage, Morgan got pregnant. "I'd never wanted to have kids out of fear of trying to raise another human in the midst of my hormonal insanity," she told me. "I contemplated having an abortion but my husband advised against it. He helped me through it but I was completely depressed and suicidal my entire pregnancy."
Any upheaval in hormone levels can worsen existing PMDD or jumpstart the condition completely. This could explain why women report that symptoms appear to get more debilitating with age.
I've always wanted the hysterectomy... I might have a shot at being a normal, sane individual for the first time in my life.
"Holding this foreign child, I just sobbed uncontrollably," Morgan said. "I didn't want or know how to be a mother." That was nearly four years ago. In that time, she has been able to build a connection with her daughter but has now decided that she cannot go on with the two-week torture of PMDD.
"I've always wanted the hysterectomy," she said. "I am 100 percent sure that I do not want more children and it would hopefully clear up 90 percent of my PMDD. I might have a shot at being a normal, sane individual for the first time in my life."
Sarah*, from Manchester, England, has told work she's having an operation in a month but they don't know what the procedure is. Even the 24-year-old's extended relatives don't know that she has PMDD.
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"Most of my family are aware I have mental health problems from time to time but that's about it," she said. "You tell someone you have PMDD and they say, 'What's that?' You tell them what it is and they say, 'Oh yeah PMS, I get that' or 'My girlfriend gets that' and you want to punch them. They have no idea how it's ruined my life."
Sarah had the condition since she started her period, which were accompanied by terrible migraines that meant she had to miss school. After suffering from depression for half her life and attempting suicide twice since the age of 13, she's decided to have the operation after trying every other alternative cure for PMDD.
"I thought I'd go to uni, have kids, all that usual stuff but I've done none of it [...] It's stopped me having a job I like, it's lost me nearly all my friends, it's broken up all my relationships," Sarah told me.
There is something uniquely hideous in the fact that women in their twenties need to give up their reproductive organs for a chance to function normally.
Is she sad that she'll never have her own biological children? "Of course, but that would never happen if I'm like this anyway [...] I'd be completely incapable of looking after it. My mom is heartbroken, obviously, but [...] she'd rather see me do whatever I can to be happy and normal and not be self-harming and wanting to kill myself every two weeks than have a grandkid."
Sarah and her mother have spent the last year seeing a gynecologist and researching a hysterectomy with oophorectomy. She says that she is terrified of the actual surgery but describes herself as weirdly calm about it all—the sort of calm you get when you've tried everything and only have one way out.
There is something uniquely hideous in the fact that women in their twenties need to give up their reproductive organs for a chance to function normally day to day. In 2015, this shouldn't have to be one of the only viable cures for PMDD. Unfortunately, we won't know until more money is put into research. It seems ridiculous that we know next to nothing about a condition that ruins the lives of so many women.
The reasons behind this are sort of obvious, though. Besides the fact that the medical industry is dominated by men, pharmaceutical companies—particularly in the US—profit from the use of PMS as a blanket term. Over-the-counter drugs like Midol claim to treat PMS symptoms like tension and irritability, even though they only contain a diuretic, a pain reliever and caffeine. In 2013, Midol took in $48 million in sales revenue.
In Women and the Ownership of PMS, sociologist Anne E. Figert writes that PMS was fully branded and commodified in the 80s, thanks to the pharmaceutical industry and the FDA. She writes that huge amounts of money were made from the illness:
"The key to defining PMS was as something that can be helped with pills, diets, and other products offered by the PMS industry. Thus, PMS became very real—complete with the price tag attached to it."
These days, PMS has become so culturally accepted that it's a joke. You're likely to hear someone mutter "Oh, she's just on her period," to dismiss any woman who might be a bit angry or upset. But the trivialisation of PMS suppresses the very idea that for some women, something much more serious is going on.
In the 1980s in England, PMS or PMDD was even used as a defence in criminal cases. Henaghan is now doing her PhD on the plausibility of the disorder as a legal defence for women. In 1986, a 17-year-old called Anna Reynolds was convicted of murder after beating her mother to death; the charge was later reduced to manslaughter on the basis of her condition. Sandie Craddock, a 29-year-old from London, committed a dozen criminal infractions in sync with her cycle and spread out in 29-day intervals. (She also attempted to kill herself once every cycle.) Craddock was later freed on condition that she had hormone therapy.
Women with PMDD say they'd rather gouge my own ovaries out with a spoon than go through this for another month
Henaghan believes the lack of knowledge and research into PMDD is partly tied up with feminist issues. "It's a Catch-22 situation," she told me. "When court cases came up around the time of Thatcher and women were using PMS as a defence, a lot of people said we can't acknowledge this: It's fatalistic, it's biologically determined. [If] our body [has] the ability to make some women weaker, it gives men the argument that we're the weaker sex."
She's definitely right. After all, what woman wants to admit her female hormones make her want to throw herself under a moving train once a month?
What we do know is that PMDD could be to blame for many women who are suffering or have been falsely diagnosed with depression, bipolar or anxiety. Dr Panay advises keeping a diary of your monthly symptoms. "Look for cyclicity in symptoms," he told me. "There should be at least a few good days in the month, usually immediately post-menstruation. And if your GP or gynaecologist is not sympathetic or helpful, find another doctor!"
Panay is part of NAPS (National Association for Premenstrual Syndrome), a British association urging doctors, gynaecologists and psychiatrists to communicate more more clearly about PMS and PMDD. "The ultimate cure for PMDD will probably arise from fully understanding the genetic cause and addressing these issues," he sighed. "There is very little funding for research into quality of life health problems, particularly in women's health. I always say that longevity means nothing without quality of life."
Until female hormones are better understood, women will still be driven to seek extreme options just to get some semblance of stability back. "Women with PMDD say they'd rather gouge my own ovaries out with a spoon than go through this for another month," Henaghan told me at the end of our conversation. The worrying reality is: Women in their twenties might not be going through the cutlery drawer, but they are seeking desperate solutions under the knife.