‘There was no erotic sensation anywhere… my clitoris was like a knuckle.’ Emily says the side-effects of antidepressant use have changed her life. Photo by Lillie Louise Major.

By Moira Wyton, Local Journalism Initiative Reporter

Emily had taken the antidepressant Citalopram since she was 17, before sex even entered the equation for her. After five years, she’d  had enough.

Like about 65 per cent of people  who take selective serotonin reuptake inhibitors, or SSRIs — some  researchers believe the number is even higher — Emily experienced the  side-effect of low libido.

But for a while that seemed worth it for  relief from her moderate depression. She took the small pinkish pill  each day, and life seemed to get a bit better. 

Then at 23 in 2019, Emily told her doctor  the sexual dysfunction was depriving her of connection and confidence in  her life. Her depression had not improved enough to justify the  side-effects, she said, and she would focus on managing it with  lifestyle changes and talk therapy.

But within weeks of  stopping her daily dose, Emily, a university student on Vancouver  Island, woke up to a much worse outcome than she had been aware was even  possible. Her genitals were completely numb.

“There was like a vitality  that was gone in my body,” said Emily, whose name has been changed to  protect her privacy. “My energy source had been cut off, there was no  erotic sensation anywhere… my clitoris was like a knuckle.”

She panicked and booked a doctor’s  appointment. But the doctor dismissed her concerns as psychological and  told her the symptoms would go away on their own. “They couldn’t do  anything about it and never heard of it.”

Two years later, she is still numb.

SSRIs and SNRIs have helped millions of  people with anxiety and depression since the late 1980s and are often  considered first-line drug choices for people who want  medication-supported treatment.

About 8.6 per cent of Canadians — 3.3  million people — took some form of antidepressant in 2019, a number that  insurance companies say has increased in the pandemic.

“Medications like antidepressants have had  profoundly beneficial impacts on people’s lives. No one wants them to be  removed,” said Jonny Morris, CEO of the Canadian Mental Health  Association in B.C. “What [patients] are calling for, and we support  too, is the expressed and informed consent around meds that can have  profound impacts on people’s lives.”

Emily is one of what could be thousands of Canadians suffering from post-SSRI sexual dysfunction,  a rare and likely underreported potential side-effect syndrome of SSRI  medications that is slowly gaining recognition from health-care  providers, pharmaceutical companies and the Canadian government. 

Underreporting due to shame and stigma make  it difficult to estimate how many people experience post-SSRI sexual  dysfunction in Canada, but conservative estimates say as many as 10,000  people — one per cent of Canada’s nearly one million SSRI users — could  experience this if they discontinue use.

The federal government quietly acknowledged the rare risk of PSSD in a January report  that followed freedom of information requests from Emily and other  advocates, as well as reports of adverse events collected by experts at  the Rxisk platform. 

The report from Health Canada said it will  ensure manufacturers update safety information for SSRIs and the similar  serotonin-norepinephrine reuptake inhibitors, or SNRIs, to include the  “potential risk of long-lasting (possibly weeks to years) sexual  dysfunction despite discontinuation of SSRIs or SNRIs.”

It followed a similar acknowledgement  two years earlier from the European Medicines Agency that “there have  been reports of long-lasting sexual dysfunction where the symptoms have  continued despite discontinuation of SSRIs/SNRIs.”

But eight months later, there is no update  from Health Canada on what steps have been taken to implement the  recommendation and warn patients of the potential risk. Two media  requests from The Tyee were unanswered.

Emily and dozens of other sufferers say Canada needs to improve pharmaceutical monitoring and drug-labelling.

“I still have moderate depression, but now I  have a much worse problem to face,” said Emily. “People deserve to know  what they may be risking.”

PSSD is a severe form of long-lasting sexual dysfunction that can result from starting or discontinuing an SSRI or SNRI.

Symptoms can include genital numbness, like  Emily experiences, weak orgasm, decreased sex drive and erectile  dysfunction or premature ejaculation, according to a 2017 literature review on the research to date.

The first paper  about PSSD was published in 2006 and chronicled the six years a  26-year-old man in the United States had suffered PSSD after taking and  stopping the SSRIs sertraline and fluoxetine, usually marketed as Prozac  and Zoloft. 

In a 2016 paper  for the International Society of Sexual Medicine, Yakov Reisman found  “there are some indications that antidepressant-emergent sexual  dysfunctions… can persist indefinitely in some individuals.”

PSSD is part of the umbrella of libido  effects, but “the difference is the problem keeps going,” said Dr. David  Healy, a psychiatrist and professor at the McMaster University  department of family medicine.

“It becomes awfully clear there’s a problem  there already when you halt treatment. You have a condition, whether  you stay on the medication or not, that is permanent.”

The Tyee spoke to three PSSD sufferers in Canada, and only Emily was comfortable speaking on the record.

One was prescribed the medications at 11  when she was experiencing school-related anxiety. She wishes her doctor  and parents had explored other options like counselling before  prescribing her an SSRI. 

“Something so sacred has been taken away  from me without my consent, like the ability to see a sunset,” she said.  “This is an intrinsic part of being alive and with other people and  connected with oneself.”

Another log truck driver in the Okanagan  Valley in his mid-40s described some days of his life as a “living  hell.” He has been unable to form romantic or intimate connections for  years, first as a result of his depression and now due to PSSD from the  drugs that were supposed to help. 

Watching his friends grow up, get married and have children, he says, “feels like watching the world go by without me.” 

Side-effects of SSRIs and SNRIs can vary in  nature and degree, from indigestion and weight loss or gain to  increased suicidal thoughts. About 65 per cent of people who take SSRIs  or SNRIs report libido effects, like having a lower sex drive or not  being able to orgasm while taking the medications.

That figure was only reported once  manufacturers started asking specifically about libido effects for  patients, who often didn’t make the link between the drugs and their  changing sex drives. Before they started asking specifically in clinical  trial and post-prescription surveys of patients and physicians, just  five per cent reported sexual impacts.

Emily said patients need to be consulted  more about the impacts SSRIs and SNRIs can have. “We need to be more  proactive about asking people how they’re doing, otherwise we aren’t  understanding the full impact of the drugs.”

All medications, like Citalopram, come with  an information sheet called a product monograph explaining potential  side-effects for physicians and pharmacists to inform patients. But  often physicians don’t have them memorized and think pharmacists will go  over all the possible side-effects with the patient. 

When a prescription is filled, the  pharmacist often assumes the doctor has already told them about the  risks before prescribing, says Alan Cassels, a pharmaceutical policy  expert at the UBC Therapeutics Initiative. 

Adverse events reporting about prescription  drugs is voluntary for physicians, who also aren’t compensated or able  to bill the time they take to do so, he noted. Reporting such events is  mandatory in hospital settings in Canada.

“There is a lot of room to improve sharing what we know about side-effects and investigating what we don’t,” said Cassels.

Emily said the loss of the sexual dimension  of herself has had a drastic impact on her life and how she imagines  her future. Once an undergraduate on Vancouver Island studying  ecological rejuvenation, the onset of PSSD worsened her depression and  she has contemplated suicide.

“Sexuality is an important dimension of  myself and missing it just degrades every aspect of my life,” said  Emily. “I’m unable to experience so much of the joy I once had in my  life, let alone romantic attraction.”

Soon after her PSSD began, Emily dropped  out of university and moved back in with her family on Vancouver Island  for emotional and financial support. She has not been able to work due  to her mental health and isn’t sure she will be able to have a full-time  job or significant relationship in the future.

“I don’t even pet dogs anymore because I feel so hollow.”

Emily feels isolated, but she is not alone.  After she was dismissed by her doctor, Emily began research online and  came across the PSSD Reddit page, which has about 2,700 active posters at any given time.

“I realized there were others like me  around the world,” Emily said. She began posting and commenting,  connecting with people who are members of PSSD advocacy organizations in  Germany, Italy and the United Kingdom.

Emily knew she wanted to push for change and support for herself and the likely thousands more in Canada suffering in silence. 

In 2020, the Canadian PSSD Society  was born from the hard work of Emily and a number of other patients who  were able to connect online. Emily still doesn’t know everyone’s real  name, as some don’t want to risk being identified.

In the last 18 months they’ve filed many  FOI requests to access data that manufacturers have provided to Health  Canada when applying for drug approval, and petitioned the House of  Commons to recognize PSSD and fund further research.

They want Health Canada to act swiftly to  update side-effect warnings on SSRI and SNRI products, fund physician  and psychiatrist education on the range of possible adverse outcomes and  require more rigorous and transparent adverse event and side-effect  reporting from pharmaceutical companies wanting to sell their products  in Canada. 

The group hopes that with wider recognition  PSSD can become a reason for people suffering to receive disability and  unemployment assistance if needed.

Counsellor Yassie Pirani says many patients’ isolation and suffering are compounded when they’re not believed by health-care providers. Photo by Lillie Louise Major.

They’re also working with Caroline Pukall at the Queen’s University Sexual Health Research Lab to conduct a survey of PSSD sufferers to better understand its prevalence and impacts on Canadians.

Little is known about what may increase  one’s risk of developing PSSD, and while some patients have recovered  after several years, there is currently no treatment, Pukall said.

“The key is really validating people’s  experiences and being able to offer them some kind of context to  understand what they are going through,” said Pukall, an associate  professor of psychology at Queen’s. “Because right now, there really  isn’t one.”

CMHA’s Morris said it’s a clear example of  how much the Canadian mental health system relies on advocacy from  patients to take adverse events seriously.

“If we had systems of care that worked, and  were closer to parity with physical health, maybe systems would be more  proactive in identifying and taking these risks seriously,” said  Morris. “It shouldn’t only be advocacy that triggers the medical  community… to take this seriously.”

Healy noted it is difficult to know how  rare the condition is because manufacturers are not yet required to  report on it, while a doctor will likely see a single case in their  whole career.

And our increasing acceptance of  medications as the solutions to all health problems, Healy says, has  made many dismissive of side-effects.

Healy, who specializes in pharmacology and  founded Rxisk, has become one of the leading experts on PSSD through his  work examining the history and rare side-effects of antidepressants.

It is hard to predict or look for all  potential side-effects of a drug based on a small clinical trial over a  short period of time, Healy said, but the onus has been placed on  patients to convince health-care providers of their serious effects. 

Healy is a firm advocate for the benefits  that antidepressants bring millions of patients, and he doesn’t align  with anti-pharmaceutical movements.

But he’s worried that without expanded  access to clinical trial data and better monitoring and treatment of  PSSD and other rare side-effects, critical research is “up against a  religious belief system” that sees prescription medications as  sacraments rather than flawed solutions.

Cassels agrees. Writing a prescription, he  says, satisfies both parties: it’s quick and doctors feel as though they  helped someone, and patients feels as though they were heard and now  have a solution. 

But given that “every medication with an  effect has a side-effect,” Cassels says medicine needs to get better at  exploring non-pharmaceutical options when appropriate to mitigate the  risk of side-effects.

If knowledge of side-effects and risks has a  chilling effect on SSRI uptake, or other prescriptions for that matter,  Cassels says “so be it.”  “I think most people would want to know a drug could cause serious  sexual dysfunction before they take it,” he said.

But making these shifts in mindset and  policy will require government to legislate reporting standards and  greater transparency from pharmaceutical companies. “They’re only going  to do it if they’re forced to do it,” Cassels noted. “It’s in their  interest not to focus on adverse risks more than they have to.”

Building that body of knowledge of PSSD and  evidence of its effects will not just help find potential solutions and  risk factors for PSSD, but help current sufferers have their pain  believed.

Yassie Pirani said many patients’ isolation and suffering are compounded when they’re not believed by health-care providers.

“There is a rupture in trust when they  experience anything from ridicule to dismissal,” said Pirani, a  Vancouver-based registered counsellor who specializes in supporting  people with PSSD and other sexual traumas.

Pirani said she can’t think of a more  stigmatized condition, because it comes at the intersection of mental  health and sexuality, two aspects of health that are already often  undervalued.

“And folks often get misdiagnosed. It’s  actually much easier for them to get diagnosed with delusional disorder  rather than obtaining a diagnosis for PSSD.”

Morris said increasing the number of  supports available beyond medications, like counselling, stable housing  and employment, will ensure drugs are used only when needed and their  potential harms minimized.

But for the moment, it can feel like the  Canadian PSSD Society is chipping away at a brick wall, Emily said. The  group was able to present to the BC Psychological Association earlier  this year, but it wasn’t received with much warmth. Calls and emails to  provincial and federal ministers of health have gone unanswered.

The Tyee reached out to Health Canada and did not hear back by press time.

Now 25, Emily spends a lot of her days  sleeping, fatigued from the mental and physical weight of her diagnosis  and the loneliness it has brought. 

Though she was never religious before, the  Bible has brought comfort with the idea that faith flourishes “if you  are able to graft your own happiness onto a bigger tree,” in Emily’s  words.

“In my personal life that tree has become God, and in the rest of my life, it’s activism,” she said.

This item is reprinted with permission from The Tyee. See article HERE.

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