‘Something So Sacred Has Been Taken Away from Me’

·13 min read

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.

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.

Moira Wyton, Local Journalism Initiative Reporter, The Tyee

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