"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."
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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.
What nearly all suffer from is debilitating depression and/or anxiety. Almost 15 percent of women with PMDD attempt suicide.
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.
To most doctors and the general public, PMDD is invisible—or worse yet, a figment of the female imagination.
"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."
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."
A medical intervention can often be found, but hysterectomy and ovarian removal is life-saving for some women.
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.
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.
"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."
I've always wanted the hysterectomy… I might have a shot at being a normal, sane individual for the first time in my life.
"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.
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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."
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.
"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."
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.
Women with PMDD say they'd rather gouge my own ovaries out with a spoon than go through this for another month