‘I was told I was men­tally ill for 20 years – but it was ex­treme PMS’

Thou­sands of women are be­ing mis­di­ag­nosed with psy­cho­log­i­cal disor­ders and men­tal ill­nesses ev­ery year be­cause of an ex­treme form of PMS, and sadly Han­nah Christ­mas was one of them. Nilufer Atik in­ves­ti­gates...

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For most of her life, Han­nah Christ­mas had been la­belled men­tally ill by GPs, psy­chi­a­trists and just about any one she asked for help. Dogged by crip­pling de­pres­sion, mem­ory lapses, and at times un­able to read or write prop­erly be­cause it felt like her brain ‘was slow­ing down’, doc­tors told her she had a se­vere mood dis­or­der and clin­i­cal de­pres­sion.

Since first go­ing to see her GP at 18, the 35-year-old Bri­tish so­lic­i­tor had been given count­less drugs to ‘cure’ her, from anti-de­pres­sants and seda­tives to the mood sta­biliser lithium. But none of the pills worked. She tried nu­mer­ous holis­tic treat­ments such as St John’s wort, B vi­ta­mins, min­eral sup­ple­ments, di­etary changes such as cut­ting out caf­feine and sugar (which helped a lit­tle), aro­mather­apy, acupunc­ture, and med­i­ta­tion, and sev­eral forms of ther­apy such as cog­ni­tive be­havioural and psy­chother­apy, all in a des­per­ate at­tempt to rid her­self of the ‘un­bear­able fog’ dom­i­nat­ing her life.

It ruined her re­la­tion­ships and she was forced to take long pe­ri­ods off work, un­able to drag her­self out of bed. Even­tu­ally, in 2012, des­per­ate af­ter los­ing her job, a psy­chi­a­trist sug­gested she try elec­tro­con­vul­sive ther­apy – an ex­treme and con­tro­ver­sial treat­ment that in­volves in­duc­ing seizures in the brain us­ing elec­tric­ity. It is usu­ally the last line of in­ter­ven­tion for ill­nesses such as schizophre­nia and cata­to­nia.

“The thought ter­ri­fied me,” Han­nah re­calls. “It lit­er­ally meant hav­ing my brain elec­tro­cuted. I re­ally didn’t want to do that, but I had reached the end of the road in terms of treat­ment. I just wanted to get bet­ter so I could live a nor­mal life.”

‘I would feel para­noid, and some days I would just lie sob­bing in bed. I’d have panic at­tacks too’

Her dark moods ruined any chance of a re­la­tion­ship for a long time be­cause boyfriends sim­ply couldn’t cope with her mood swings. “I re­mem­ber stay­ing at my boyfriend’s fam­ily’s house one Christ­mas and it was Box­ing Day. Every­one was happy and cel­e­brat­ing but I was in floods of tears for no rea­son,” she says. “He tried to com­fort me but couldn’t un­der­stand why I was so up­set – there was no rea­son. I just felt aw­ful and over­whelmed by sad­ness.”

Han­nah was in a long-term re­la­tion­ship for seven years in her late twen­ties, but they broke up. “He just sud­denly ended it one day and it was a shock,” she says. “It wasn’t be­cause of my health prob­lems but I wor­ried that some­one new wouldn’t want to put up with my crip­pling de­pres­sion ev­ery month.”

Han­nah couldn’t even try to mask her low days. “I would feel para­noid think­ing things like, ‘no­body likes me’ and have re­ally neg­a­tive thoughts about my­self,” she says. “I would feel so low I didn’t even want to talk to any­one for up to two weeks. Some days I would just lie sob­bing in bed. I’d have panic at­tacks too.”

Other times it was so bad that she couldn’t re­mem­ber peo­ple’s names and would sleep for 15 hours at a time.

“It was so dif­fi­cult and af­fected ev­ery part of my life,” Han­nah says. “My cog­ni­tive func­tion was so badly im­paired. My mem­ory was rub­bish and it felt like ev­ery­thing in my head had slowed down.”

It took a long time but Han­nah even­tu­ally be­gan to no­tice a pat­tern. “When my pe­riod started, I would be back to nor­mal again. It was like a big cloud had lifted from me. I’d feel en­er­getic, re­laxed, and happy. I’d so­cialise with peo­ple and just be Han­nah again. It was so bizarre. Then two weeks later it would all start again. I would wake up feel­ing a lit­tle down and teary and as the days passed it would get worse and

worse, to the point where I couldn’t func­tion,” she says. “I wouldn’t get out of bed to dress my­self or eat or go any­where. If peo­ple called or texted me I would just ig­nore them.

“I had friends and fam­ily who wor­ried about me but I ex­plained that I just needed to be left alone. My Mum would come and check on me but she knew she would have ‘her Han­nah’ back once the de­pres­sion had passed. Like me, she had a feel­ing that the doc­tors were wrong – that my prob­lems were some­how linked to my pe­ri­ods – but no one would lis­ten. I’d been di­ag­nosed as clin­i­cally de­pressed and that seemed to be that.”

She was even given lithium by a GP who told her she had some kind of ‘mood dis­or­der.’ The pow­er­ful drug is usu­ally given to peo­ple who suf­fer from bipo­lar dis­or­der or schizophre­nia. “It made me feel aw­ful – re­ally slug­gish and I put on weight,” she re­calls.

Han­nah strug­gled on for more than 20 years with her ill­ness. She de­cided not to have elec­tro­con­vul­sive ther­apy be­cause of the long-term side ef­fects such as per­ma­nent mem­ory loss. In­stead, she tried ev­ery­thing to cope with her over­whelm­ing de­pres­sion ev­ery month, al­ways hop­ing for a so­lu­tion.

It wasn’t un­til last Septem­ber, when Han­nah was chat­ting to an old col­league on the phone, that some­thing clicked. She told her friend about her symp­toms and she sug­gested they might be brought on by hor­monal changes.

“She’d worked for NHS Di­rect be­fore and told me about a con­di­tion called Pre­men­strual Dys­pho­ric Dis­or­der [PMDD],” she says. “It’s a very ex­treme form of Pre­men­strual Ten­sion (PMT) brought on by a hor­monal im­bal­ance. I’d never heard of it but when I be­gan re­search­ing the con­di­tion on the in­ter­net, it all made sense.

“I felt so re­lieved. Af­ter all these years I fi­nally un­der­stood what was re­ally wrong with me. And I wasn’t go­ing mad.”

Un­like PMT, which causes symp­toms such as headaches, bloat­ing, pain and dis­com­fort in the ab­domen, back­ache and breast pain, with PMDD emo­tional symp­toms are more dom­i­nant. Pain can be ex­treme and cou­pled with nau­sea and panic at­tacks. Suf­fer­ers also ex­pe­ri­ence sui­ci­dal thoughts, fre­quent cry­ing, anger, feel­ings of be­ing out of con­trol and trou­ble think­ing or fo­cus­ing.

The symp­toms typ­i­cally oc­cur dur­ing the two weeks be­fore men­stru­a­tion, and go away once it starts. They are thought to be caused by an in­creased sen­si­tiv­ity to the nat­u­ral changes in hor­mone lev­els.

It ex­plained Han­nah’s symp­toms of feel­ing fine and then deeply de­pressed ev­ery fort­night. But be­cause PMDD only af­fects be­tween 3-5 per cent of women world­wide, many GPs have never heard of it.

Han­nah’s re­search led her to Pro­fes­sor John Studd, a worl­drenowned ex­pert on PMS who set up the first-ever spe­cial­ist unit at the

‘It does makes me feel an­gry that there are women like me be­ing given un­nec­es­sary drugs’

Chelsea and West min­ster Hos­pi­tal in Lon­don. The pro­fes­sor, who now runs a pri­vate prac­tice, con­ducted ex­ten­sive stud­ies into the ef­fects of hor­mone ther­apy – in par­tic­u­lar the use of the fe­male sex hor­mone oe­stro­gen – on PMDD.

He dis­cov­ered that in 94 per cent of cases, oe­stro­gen ei­ther dra­mat­i­cally re­duced symp­toms or elim­i­nated them al­to­gether. It was a huge break­through and meant that women with the con­di­tion who, like Han­nah, had been told for years that their prob­lem was psy­cho­log­i­cal, or who had been given the wrong treat­ment, could be helped.

“Women with PMDD of­ten de­scribe hav­ing a Jekyll and Hyde type per­son­al­ity,” ex­plains Prof Studd. “About 10 days be­fore their pe­riod starts, they have this to­tal change of per­son­al­ity. It can be very de­struc­tive – par­tic­u­larly when it comes to their per­sonal re­la­tion­ships. Peo­ple might tell them to pull them­selves to­gether, but they can’t as they have no con­trol over the way they feel.”

Prof Studd’s re­search has also re­vealed that not only are women with PMDD in­tol­er­ant of the hor­mone pro­ges­terone – pre­vi­ously one of the most pop­u­lar types of treat­ment for PMS through the con­tra­cep­tive pill – it ac­tu­ally makes their symp­toms worse.

Af­ter Han­nah went to see Pro­fes­sor Studd at The Lon­don PMS and Menopause Clinic in Oc­to­ber last year, she be­gan hor­mone treat­ment – a com­bi­na­tion of an oe­stro­gen im­plant and a coil that ad­min­is­ters small doses of pro­ges­terone, which helps to make the body more tol­er­ant to pro­ges­terone, the hor­mone largely re­spon­si­ble for PMDD symp­toms. She says there has been an im­prove­ment though the treat­ment costs around £2,000 (about Dh12,400) a year.

“At last I feel like I have found the an­swer and can re­claim my life,” Han­nah says. “My de­pres­sion is not as bad and only lasts around five days now. I still feel low and cry but don’t be­come bed bound. I have been able to carry on work­ing part-time at a fam­ily law prac­tice and they have been very un­der­stand­ing. I have even started a se­ri­ous re­la­tion­ship. My boyfriend John knows all about my PMDD and it hasn’t put him off at all. If I am hav­ing a bad day he is there for me.

“It does make me feel an­gry that there are women like me be­ing given un­nec­es­sary drugs and told they have men­tal ill­nesses such as clin­i­cal de­pres­sion, bipo­lar or even schizophre­nia, when it is an ex­treme re­ac­tion to hor­mones that can be treated. I wasted 20 years of my life but at last now I feel like I can start liv­ing.”

Af­ter 20 years of suf­fer­ing, Han­nah has re­claimed her life

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