We asked a doctor why it takes so long to diagnose PMDD

diagnose pmdd

Most women I know have a PMS story they’ll tell for laughs. Mine is that, when I was 17, I cried when arriving home after school to find that the fancy focaccia bread my mum had bought was finished. Some women also have a horrible PMS story; mine is that sometimes it feels like there are forks scratching my skin from the inside during the week before my period.

Fewer — an estimated 2-10% of women of reproductive age — have a PMDD story. And there is nothing remotely funny about them.

Premenstrual dysphoric disorder (PMDD) is hormone-related mood disorder that affects women during the luteal phase of their menstrual cycle — the stage after ovulation and before menstruation, when women would report having PMS. Unlike PMS, it has recently been classified as a depressive disorder in the DSM-5, an authoritative guide for the diagnosis of mental health illness by healthcare professionals around the world.

Women with PMDD may describe extreme symptoms that impact their ability to function in daily life, such as rage, depression, anxiety, and severe fatigue. A common theme in their experiences is the lengthy and difficult process of getting a diagnosis.

As it turns out, the diagnostic criteria for PMDD are fairly straightforward. It’s just that not all doctors are aware the condition exists.

“If I’m really honest, most GPs are still diagnosing severe PMS instead of PMDD. It won’t even be a condition that is recognised by GPs. Mental health teams will have a lot more instances of diagnoses and using the term ‘PMDD’. If you ask me, most GPs don’t know about it.”

“PMDD is relatively new,” says Dr. Preethi Daniel, medical director at London Doctors Clinic. “It’s only just been looked into and categorised, and diagnostic criteria has only come up in the last few years. So it’s still not widely understood by doctors.

“If I’m really honest, most GPs are still diagnosing severe PMS instead of PMDD. It won’t even be a condition that is recognised by GPs. Mental health teams will have a lot more instances of diagnoses and using the term ‘PMDD’. If you ask me, most GPs don’t know about it.”

A survey of 100 women by PMDD support group Vicious Cycle reveals that 10% of respondents were told by their GP that PMDD did not exist, while 66% learned about PMDD themselves via Google.

For Dr. Louise Newson, who runs a menopause clinic at Spire Parkway Hospital in Solihull, it’s both a lack of training in GPs and mistaking of symptoms — such as extreme mood swings, depression, and extreme rage — that causes PMDD to be misdiagnosed as bipolar or depression.

“If you take the symptoms in isolation, then you can understand why people diagnose it as a psychiatric or mental illness,” she says. “But actually, when you take a very careful history you can see that it’s related to periods.”

And while there are guidelines available for the diagnosis and treatment of PMDD, not every healthcare professional has necessarily read them. “There’s a lot of women who don’t get the right help, and unfortunately [healthcare professionals] haven’t read the guidelines. So, as a patient, the treatment does vary depending on who you see,” says Dr. Newson.

Although, she adds, this is not necessarily the doctor’s fault. “It’s because of the way we’re trained. It’s often not part of the bigger curriculum.

“These psychiatrists aren’t sitting here thinking: ‘Oh, we’re missing it’, it’s that they don’t even know about it.”

To diagnose PMDD, a patient must keep a daily menstrual diary for at least two cycles that describes any symptoms she experiences. It’s essential that this diary is not done in retrospect, adds Dr. Daniel, as recalled symptoms are not reliable and should not be used to inform a diagnosis.

She must also have at least five of the 11 symptoms outlined in the diagnostic criteria, which include depressed mood, exaggerated changes in mood (emotional lability), irritability and anger, poor concentration, and disturbed sleep patterns.

Doctors will gauge whether or not the symptoms are consistent throughout the cycles that have been recorded, and whether or not they disappear when a woman’s period starts.

There is no blood or biochemical test that can be used to diagnose PMDD, but a doctor might do one to exclude other causes, for example, a thyroid disorder, adds Dr. Newson.

Both Hannah, 32, and Laura Murphy, 39, waited 17 years from first approaching a doctor to getting a diagnosis. Another woman I spoke to, Jessica, is still waiting for hers.

All three women recall being dismissed by their doctors in some way or another. For Laura, it was her counsellor, rather than her GP, who suggested her symptoms might be something more than PMS.

“Doctors were saying, ‘This is PMS, all women go through it, you just have to deal with it,’” recalls Laura. “It was my counsellor who said, ‘No, this isn’t normal.’ So I went home and started Googling PMS, and up popped PMDD. I read through and it all started making sense.”

“My consultant said she was 100% sure I had PMDD from my symptoms. I cried the whole journey home from Surrey to Bristol with relief, knowing that there was actually something wrong and it wasn’t me.”

Hannah started experiencing symptoms at age 14, having cramps so painful that she was screaming in pain and unable to move. When at the doctor’s with her mother, she was told that it was “all in her head”, while her mother was told that the problems were simply behavioural.

16 years later, after having her first child, she was told her symptoms were due to the ‘baby blues’, a postnatal period where some mothers experience feelings of tearfulness and irritability. It was then that she made a private appointment with a specialist clinic.

“My consultant said she was 100% sure I had PMDD from my symptoms. I cried the whole journey home from Surrey to Bristol with relief, knowing that there was actually something wrong and it wasn’t me,” she says.

For Jessica, both the silence surrounding PMDD and the assumption that because PMS is ‘normal’, women should simply put up with it, made it difficult for her gauge the nature of her symptoms. After a particularly difficult year, she was unsure whether her feelings of depression and frustration were due to her adjusting to change or a medical problem.

“Am I just going through a really hard time and feeling depressed because my life is unrecognisable to me, or is it PMDD? You don’t know what normal is and you don’t know what people’s normal threshold of pain is, both physically and emotionally,” she says. When she finally approached a doctor and told him she thought she had PMDD, he was dismissive.

“The doctor was like, ‘Mmm… I really don’t think it’s anything to do with it, nothing in textbooks implies that it would.’ And I thought, ‘Textbooks are one thing, but this is my body and I know my body well.’ I think that, as women, we intuitively understand our bodies and we should trust our bodies more.

“Women are often mislead by people that assume they know better than us. I’m not saying that I know better than a doctor, but I have more knowledge of what’s going on in my body than a doctor.”

While some doctors may not have specific knowledge of PMDD, they should be able to offer support and suggest treatment for managing PMDD symptoms, such as low mood or pain. Bringing as much information as possible to the doctor’s office — especially a detailed menstrual diary — can help women who have PMDD get a diagnosis quickly and correctly.

However, this is not enough to combat the assumption that PMS, PMDD, or any period-related pain is something ‘normal’ that women should simply ‘put up with’.

Talking openly to other women and sharing each other’s stories can work to lift some of the stigma and silence surrounding the condition, as well as remind women with PMDD that they are being heard and not suffering alone. If you think you have PMDD, don’t be afraid to advocate on your own behalf: you are the authority on how you feel and have the right to ask questions.

Featured image is of a woman looking pensive, turning her face away from the camera and looking into the distance. She wears stylish glasses with thick black frames.

Monica Karpinski

Founder & Editor, The Femedic

Monica is the Founder and Editor of The Femedic. Against a journalism background and after years of leading content marketing projects in the healthcare space, it became clear that health information out there for women simply wasn’t good enough. No-one had bothered to look deeper into the ways women were searching for information, or consider the depth of what they actually needed to know. Instead of waiting for the perfect publication to approach her, she created The Femedic.

Monica has been named one of The Drum’s 50 under 30 for influential women in digital 2018 and was shortlisted for Female Entrepreneur of the Year in the 2018 British Business awards. She speaks and writes widely on gender and health inequality.

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