‘Broken’: Life with a hid­den dis­order

Lucy Adlam struggled with undia­gnosed pre­men­strual dys­phoric dis­order for years. She tells Lucy Cooper she wants other women to know they are not ‘crazy’ and they are not alone. Trigger Warning: This post discusses PMDD, suicidal ideation/attempt, mental health struggles, and themes of hopelessness. Please read with care.

There had been many times in Lucy Adlam’s life when, over­whelmed by rage, depres­sion and exhaus­tion, she con­tem­plated tak­ing her own life. Speak­ing from the Greytown home she shares with her two chil­dren, two cats and res­cue dog Meg, one occa­sion in par­tic­u­lar stood out.

“I was with all my best friends, look­ing out at the Swiss Alps, lit­er­ally the most pristine place in the world, and I wanted to kill myself,” she says.

“At the time I knew something was wrong, but when you’re in it, you’re not reas­on­able, rational.”

Adlam, partner Jayden Purdom and her dog, Meg.

What Adlam was “in” was pre­men­strual dys­phoric dis­order (PMDD), a severe, hor­mone-related con­di­tion in which the brain responds abnor­mally to hor­monal fluc­tu­ations, affect­ing a woman’s mood, body and daily life.

Then 21, Adlam had been try­ing to nav­ig­ate the cyc­lical battle of PMDD since the age of 15, when she recalled first exper­i­en­cing sui­cidal ideation.

It would take another 15 years for her to be dia­gnosed with PMDD, which is thought to affect a small pro­por­tion of women of repro­duct­ive age.

It was added to the DSM-5 (Dia­gnostic and Stat­ist­ical Manual of Men­tal Dis­orders) in 2013 and later included in the World Health Organ­isa­tion’s ICD-11 (Inter­na­tional Clas­si­fic­a­tion of Dis­eases, 11th Revi­sion), help­ing cement its recog­ni­tion as a legit­im­ate med­ical and psy­chi­at­ric con­di­tion.

The land­mark moment came after years of cam­paign­ing by women’s health advoc­ates and experts.

But con­tro­versy about the con­di­tion remains, with some in the med­ical pro­fes­sion and aca­demia arguing that it patho­lo­gises nor­mal hor­monal fluc­tu­ations.

Today, with an effect­ive treat­ment plan in place, Adlam is back in full­time work, secure in her new home and ready to share her exper­i­ence.

“The first thing is rais­ing aware­ness, so women know what this is, know that it’s got a name, and they know that it’s not them being crazy or emo­tional or angry. This is a thing and it’s not just them.”

‘It came to a peak last year’

For years, in the two weeks before her period – known as the luteal phase – Adlam suffered an inex­or­able onset of a range of debil­it­at­ing symp­toms.

“We call it hell week, the week lead­ing up to a period,” she says.

For Adlam, hell week was char­ac­ter­ised by peri­ods of inex­plic­able, tower­ing rage, an over­whelm­ing sense of hope­less­ness, feel­ings of depres­sion and crush­ing exhaus­tion.

The chronic pain asso­ci­ated with her adenomy­osis – a con­di­tion where the uter­ine lin­ing grows into the mus­cu­lar wall of the uterus – would also worsen dur­ing this phase.

Basic tasks such as get­ting dressed and cook­ing din­ner would be almost impossible, and she was racked with panic attacks to the extent she thought she was hav­ing a heart attack.

“My brain would get to a point that it was so stressed … I would dis­so­ci­ate.”

Attempts to treat Adlam’s symp­toms – which were not linked to PMDD by health prac­ti­tion­ers until recently – had been hit and miss.

When she was 15 she was dia­gnosed with poly­cystic ovarian syn­drome, a com­mon hor­monal and meta­bolic dis­order affect­ing women of repro­duct­ive age, which can cause irreg­u­lar peri­ods, infer­til­ity and acne.

“The pos­it­ive of that was I was put on the con­tra­cept­ive pill ... and men­tally I respon­ded well to that.”

An oes­tro­gen-based con­tra­cept­ive ring that she tried in her early 20s, had the oppos­ite effect, however, and had to be dis­con­tin­ued.

Preg­nancy with her first child in her mid-20s brought a period of calm.

“I remem­ber feel­ing the hap­pi­est I’ve ever felt,” Adlam says.

“I look back, and it’s because, again, I wasn’t ovu­lat­ing, so I wasn’t going through the hor­monal change. It was peace­ful, just enjoy­ment, no noise.”

The birth of her second baby was, on the other hand, “post­nat­ally hor­rific”.

This wasn’t a coin­cid­ence, research sug­gests. The same abnor­mal brain sens­it­iv­ity to hor­monal change that drives PMDD can be triggered even more severely by the dra­matic hor­mone drop after child­birth, put­ting women with PMDD at greater risk of post­natal depres­sion. The cyc­lical nature of PMDD had a cumu­lat­ive impact on Adlam’s health and self-esteem.

“It breaks your con­fid­ence down, so you lose your­self and it’s really hard to bounce back after those monthly exper­i­ences.

“When you’re liv­ing without treat­ment, you’re con­stantly being chipped away at.”

Last year, however, the recur­ring monthly pat­tern of crash and recov­ery Adlam had lived with for dec­ades left her “totally broken” and, unable to rebuild, she exper­i­enced a near-total col­lapse.

“It all came to a peak. It was the hard­est time of my life.”

She became caught in a loop of cata­strophic think­ing, a widely recog­nised symp­tom of PMDD, that zer­oed in on her and her chil­dren’s secur­ity.

“For me, it was the fear of home­less­ness,” says Adlam, who had split up from her hus­band and the father of her daugh­ters some years before.

“Dying and leav­ing my kids, and my kids not being OK. The thoughts were so strong it was like it had already happened.”

Appeals to her doc­tor – whom she vis­ited five times over five weeks last autumn – to be referred to a spe­cial­ist “got me nowhere”, and even­tu­ally she drove her­self to hos­pital.

“That was the worst night of my life. It was my daugh­ter’s 8th birth­day that morn­ing, and so I just had to do whatever I could to sur­vive that night, get her to school. And then I went up to hos­pital.”

But her vol­un­tary hos­pit­al­isa­tion would mark a con­sid­er­able turn­ing point in Adlam’s 20-year battle with PMDD.

At the hos­pital she was con­nec­ted with a United States-based psy­chi­at­rist over Zoom, who was famil­iar with PMDD.

She pre­scribed Adlam an SNRI – sero­tonin-nore­pineph­rine reup­take inhib­itor – a class of med­ic­a­tion used primar­ily to treat depres­sion, anxi­ety dis­orders and chronic nerve pain.

“It instantly soothed me men­tally, phys­ic­ally,” Adlam says, and provided the 36-year-old with relief from her symp­toms that allowed her to increase her hours at work, find sta­bil­ity, be the mother she wanted to be and meet someone new. “I finally got adequate treat­ment and everything changed. Four months later, I was in Aus­tralia get­ting nom­in­ated as the MVP of the com­pany I worked for.”

"I finally got adequate treat­ment and everything changed. Four months later, I was in Aus­tralia get­ting nom­in­ated as the MVP of the com­pany I worked for." Lucy Adlam

Not just a health issue

With her PMDD under bet­ter con­trol, Adlam has shif­ted her energy to sup­port­ing other women liv­ing with the con­di­tion.

PMDD Aotearoa was foun­ded by Rochelle Boyce, who brought together a group of people, includ­ing sci­ent­ists and people liv­ing with PMDD, and Adlam.

The registered char­ity was formed last year with the aim of rais­ing aware­ness and redu­cing the stigma of the con­di­tion and improv­ing women’s access to care.

Hav­ing sur­vived a con­di­tion that takes, on aver­age, 12 years to be dia­gnosed and is linked with a reduced qual­ity of life and an increased risk of sui­cide, Adlam is determ­ined that other women be heard, seen and under­stood quickly.

For her, the ques­tion of being able to access appro­pri­ate care is as much about eco­nomic equity as it is about ensur­ing women’s health and well­being.

“I was very much on the cusp of los­ing my life, and here I am fight­ing to be seen by someone,” she says.

“I could have put that energy into much bet­ter things. Now I’m work­ing full­time, and I think of all the taxes I’m pay­ing now.

“This is great for the eco­nomy that I’m treated.”

The cur­rent primary health­care sys­tem of 15-minute GP appoint­ments was also largely inad­equate for women, Adlam believed, par­tic­u­larly for those liv­ing with com­plex con­di­tions.

Many of these, such as PMDD, per­i­meno­pause and endo­met­ri­osis, were still poorly under­stood by med­ical prac­ti­tion­ers.

“I even ended up book­ing half-hour appoint­ments with the GP … but I still wasn’t get­ting the right treat­ment.”

‘We can’t relax’

Rachael Sum­ner, PMDD Aotearoa co-chair­per­son and a senior lec­turer in bio­medi­cine at AUT, says PMDD is not just a period-related sad­ness or pain.

It sat very much out­side healthy vari­ations in responses to hor­monal changes.

“It is something in the way the brain is pro­cessing these hor­mones that needs spe­cific and dif­fer­ent atten­tion,” she says. “The symp­toms are very strik­ing. This is irrit­ab­il­ity, rage, feel­ings and thoughts a woman would not have had before.”

While there was greater aware­ness of PMDD among med­ical pro­fes­sion­als, “we can’t relax with the cur­rent tra­ject­ory”, Sum­ner warns.

PMDD Aotearoa’s goal was to develop a suite of New Zea­l­and-cent­ric resources for GPs, health prac­ti­tion­ers, women liv­ing with PMDD and the fam­ily and friends sup­port­ing them.

“If someone goes to their doc­tor with PMDD, they know who in New Zea­l­and can help them,” Sum­ner says. “They will get the right and cur­rent treat­ments.”

The lack of aware­ness of PMDD speaks to a more sys­temic blind­ness in women’s health, she says.

“A woman-centred approach needs a men­strual cycle-focused approach.”

Without it, clini­cians across the med­ical spec­trum risked miss­ing vital data that could help improve under­stand­ing of con­di­tions such as PMDD and how they were affect­ing women.

A global study repor­ted by the Inter­na­tional Asso­ci­ation for Pre­men­strual Dis­orders found 34% of people with PMDD in its sample had attemp­ted sui­cide dur­ing a PMDD epis­ode.

However, Sum­ner says, autop­sies in New Zea­l­and “don’t take into account the men­strual cycle phase” of women who are sus­pec­ted of hav­ing died by sui­cide.

Nev­er­the­less, there is “low-hanging fruit” that the med­ical pro­fes­sion in this coun­try can take advant­age of now to improve the out­comes of those liv­ing with PMDD, she argues.

One of the gains that could be made was for a woman’s exper­i­ence to be val­id­ated when she saw a GP or health prac­ti­tioner.

“Women should feel heard. That shouldn’t take any money. It is costly for every­one to not acknow­ledge PMDD.”

‘Ulti­mately, I feel really proud’

There is no doubt that today, with her symp­toms treated effect­ively, Adlam feels a sense of hope she struggled to main­tain while liv­ing with undia­gnosed PMDD.

From her exper­i­ence, Adlam says the people around a per­son liv­ing with PMDD could shape how the con­di­tion felt day to day. “The right sup­port can make it easier to man­age,” she says, “while a lack of under­stand­ing can make the symp­toms feel harder to carry.”

Adlam urges women liv­ing with PMDD to seek out sup­port groups or people they trust, to lean on.

For Adlam, her part­ner, Jay­den Pur­dom, exem­pli­fies the empath­etic and kind approach she needs to help man­age her con­di­tion. For Jay­den, it is simple: “When someone is at their worst, be your best for them.”

But the battle with PMDD had left its mark, she says. “I used to be so social, doing lots of like com­munity work, just being out and about, and now I live a quieter life.

“I have to pro­tect myself from los­ing any energy in case I need to fight it again.”

There was also a sense of grief for the time she and her fam­ily had lost to the con­di­tion.

“I look back and I think, ‘ima­gine if I had been treated for PMDD’. My post­natal exper­i­ence would have been bet­ter, my chil­dren would have had a bet­ter start.

“But ulti­mately now I can def­in­itely look back and I feel really proud of the strength that took, and where I am now. So that’s a pos­it­ive.”

Adlam’s advice to women who believe they have PMDD is to start track­ing their mood and cycle and advoc­ate hard for them­selves.

“I also urge fam­il­ies and people around women to look out for them if they are noti­cing changes in mood.

“How sad that we need to advoc­ate that hard for ourselves,” she says. “But it can be treated. Your life can be so much bet­ter.”

If You Need Support (Aotearoa New Zealand)

• Need to talk? 1737 — Call or text 1737 for free, 24/7 support from a trained counsellor. Mental Health Foundation of New Zealand

• Lifeline — 0800 543 354 or free text 4357 (HELP). Mental Health Foundation of New Zealand

• Suicide Crisis Helpline (TAUTOKO) — 0508 828 865. Mental Health Foundation of New Zealand

• Depression Helpline — 0800 111 757 or free text 4202. Mental Health Foundation of New Zealand

• In an emergency, call 111.

  
  

(If you’re outside NZ, search “find a helpline” for your country’s services.) Mental Health Foundation of New Zealand