This post is the original piece written by Katinka Newman, author of The Pill That Steals Lives: One Woman’s Terrifying Journey to Discover the Truth about Antidepressants, by Katinka Blackford Newman (John Blake £8.99), thepillthatsteals.com. A slimmed down version appeared in the Daily Mail.
Its unusual for a day to go past when I don’t utter a prayer of gratitude that my experience with antidepressants didn’t end in my death or permanent disablement.
I’m one of the estimated 1-4 % percent of people that reacts badly to SSRI antidepressants. By that, I don’t mean feeling a bit dizzy or not quite myself. An astonishing side effect of all SSRI antidepressants is that for a small percentage of us, we become suicidal, violent, and in some cases homicidal. These side effects are actually stated on the package inserts of all the SSRIs, the most common of which are Prozac, Escitalopram, Citalopram, Seroxat, Sertraline, Pristiq, Cymbalta and Venlafaxine.
Experts who know my story say I was lucky to survive. It began with being prescribed the antidepressant escitalopram for sleepless nights while going through a divorce. Within hours I became dangerously psychotic, hallucinating that I had killed my children. When taken to hospital, doctors failed to spot I was suffering an adverse drug reaction, and gave me more pills that I was unable to tolerate. Over the course of a year, I became so ill I could barely leave the house. By a stroke of luck I was taken to another hospital that took me off all five medications I had been forced to take. Within weeks I was better, back at work and training for a half marathon.
That was four years ago and apart from nightmares, flashbacks, and a profound distrust of any medication that isn’t strictly necessary, I’ve come out unscathed and thankful to be alive.
Recently I’ve come across a group of people who have given me another reason to be grateful – they can no longer have sex while I can.
There is some knowledge that sexual dysfunction is a side effect of SSRI antidepressants while you are taking them. Symptoms include erectile dysfunction in men, inability to orgasm in women and genital numbness. Around 59% of people of patients experience these sexual side effects, according to the Montejo study, published in the Journal of Clinical Psychiatry in 2001 and one of the most authoritative papers on this subject.
Unfortunately, doctors rarely warn the pills can affect your sexual performance, sometimes with tragic consequences.
Professor Peter Goetzsche is head of the Nordic Cochrane Centre and is concerned about the dangerous side effects of psychiatric drugs. He is particularly worried about SSRIs being given to youngsters. He told me that while he was lecturing in Australia, a doctor told the audience about three boys who could not get an erection the first time they had sex. All three attempted suicide, as they had no idea it was the SSRI they were taking that was causing this. “People almost always think there is something wrong with them and not that it can be the pills”.
Professor David Healy is professor of psychiatry at Bangor University and he puts the figure of sexual dysfunction on SSRIs as far higher.
“Almost everyone who takes an SSRI is affected to some extent. Most people, if you ask them, will experience some degree of genital numbing 30 minutes after taking a pill”
During my year on antidepressants, sex was the last thing on my mind. I would guess that it was also the last thing on any else’s mind who met me at the time. The medications had made me into an overweight, dribbling wreck, unable to finish a sentence.
I remember clearly the knowing nods of my treating psychiatrist, and seeing him write the words anorgasmia on my notes. This followed an excruciatingly embarrassing session when he’d quizzed me on whether, in his words, I could have sex with myself. When I answered no, he sighed and mumbled something about it being more important to get better. Ironically the pills he thought were helping, were the cause of my illness and after the initial agony of going cold turkey off 5 different medications, the rebirth of emotions was overwhelming.
My ability to orgasm was the last thing to come back, and it was only when this returned a month after stopping the medications, that I felt like my old self again. Others aren’t so lucky.
Kevin Bennett, 39, from County Durham has decided to bravely speak out on behalf of sufferers of PSSD (Post SSRI Sexual Dysfunction).
Post SSRI Sexual Dysfunction is exactly what it says it is. Shockingly, there are a significant number of people who can’t have sex after coming off antidepressants.
Both men and women can be affected, it can go on for weeks, months, years or indefinitely. And there is no cure.
Healy, regularly comes across sufferers through his website, RxISK, (https://RxISK.org) where people report adverse drug effects. He estimates that there are tens of thousands of people in the UK with PSSD.
“No one knows what causes PSSD and why some people suffer and others don’t. It’s the same with most drug injuries, for example 60 years later, we still don’t know why thalidomide causes birth defects.”
“A possible explanation is that SSRI’s cause damage to nerve cells in the spinal cord, which are linked to the genital area. We know when tested on animals they cause nerve cells in the spinal cord to disintegrate, so it may be this happens in humans too. Whatever the cause, the consequences can be devastating. It’s not uncommon for this condition to cause marriage break up, job loss and suicide“ says Professor Healy.
Kevin’s story began in 1996 when he was 18. His parents insisted he saw a doctor because he had dropped out of school, deciding not to continue with A levels. “It never should have been treated as a medical problem, I was just a normal teenager going through anxiety”, says Kevin.
His GP prescribed 20 mg of Prozac, and the aim was that it would reduce his anxiety and he would return to academia. “I wasn’t concerned about side effects because I considered anything given to me by a doctor would be safe”.
Within four days, Kevin was rendered completely impotent.
“I was surprised the drug was powerful enough to cause impotence, because I thought this was a problem that affected elderly men. However as I wasn’t in a relationship at the time, I wasn’t particularly concerned as I believed this was a temporary side effect”.
There were other problems too. He became forgetful, and unable to retain information while studying. He became drowsy in the day despite having a full night’s sleep.
On hearing this, his doctor decided to up the dosage to 40 mg per day. Things didn’t improve, and by then Kevin had decided A levels were not for him, and instead he decided to enroll in college to train as a central heating engineer. Prozac had been of absolutely no benefit to him, so he decided to quit cold turkey after just four months.
In the next few weeks, Kevin’s drowsiness disappeared but there was no improvement in his sexual functioning.
“At this stage I figured that the Prozac must take a little time to get out of your system, and that soon things would return to normal. When the weeks became months, I became concerned. I didn’t understand why I hadn’t returned to normal. It didn’t make sense to me because I know that so many people had taken Prozac before. I’d seen it in the newspapers and heard how it was called the happy pill. It couldn’t possibly have lasting effects or else people would know about it.”
At the time Kevin was a virgin. His first sexual encounter, a few months after quitting Prozac was an embarrassing disaster, despite his first girlfriend’s sympathetic response.
A year later, there was no sign of improvement. Kevin wrote to the drug manufacturer, Eli Lilly asking for advice. They wrote back saying Prozac was not the cause of the problem and therefore he should consult his doctor about it. (Since 2011 Eli Lilly have put a warning in their drug product information saying that symptoms of sexual dysfunction occasionally persist after discontinuation of Prozac treatment). Kevin’s GP dismissed the idea that Prozac had caused his condition, insisting the sexual side effects would finish after quitting the drug and that my impotence must by psychological. He assured him he would be fine once he was in a relationship.
“I was disheartened that a doctor could dismiss what a prescription drug could cause. “
Kevin went on to try to have relationships but they were always inhibited by his inability to get an erection.
“Girls found it hard to accept that I was sexually attracted to them and took it personally, so relationships often fizzled out after weeks or months”
In 2002, Kevin became involved in a long term relationship with a girl who was very understanding about his problem, but the fact remained they had virtually no sex life. Kevin was determined to resolve the issue.
He finally persuaded his GP to refer him to a specialist. Over the course of the next 18 months he saw two urologists, a radiologist, a neurologist and an endocrinologist, sometimes having to pay for it himself.
Various tests including ultrasounds, and blood flow showed that everything was working normally. The specialists concluded that it must be the Prozac that was the cause of his impotence.
Unfortunately no one had a cure, and Kevin was advised that the best course of action was injection therapy, in which he has to inject a muscle relaxant just before intercourse. Age 27, Kevin was able to have penetrative sex for the first time. The drawbacks of this type of injections are that erections can last many hours and so sex has to be a planned event. “Of course I’d prefer to be able to have an erection spontaneously and have sex more frequently but having sex at all is an improvement than before”.
Ten years later, Kevin’s condition hasn’t improved. He still has to inject himself in order to have sex.
“It’s humiliating, I can’t recall the amount of times I’ve been intimate with a woman and things have hit a wall.”
“I’ve had to manage to learn to cope with impotence, but what I find hard to accept is how I became impotent. I’m angry that I was given a dangerous drug that I didn’t know was any more serious than an aspirin”.
Kevin was so angry about what happened to him that he flew to the USA to give a talk to health professionals about his experience. One of the reactions from doctors was that patients would be reluctant to take SSRI’s if they knew it could affect their sex lives permanently. “I was astonished that doctors could actually think its ok not to warn people “, says Kevin.
He also asked our regulatory body, the MHRA if they had other cases, using the freedom of information act to get them to disclose the fact that there have been 1420 reported cases of sexual dysfunction, of which 290 were reported as being permanent. It doesn’t sound much, but the number of people who report adverse side effects through the MHRA yellow card reporting system, is a tiny fraction of those affected. Unfortunately, most people don’t even know they should report an adverse drug effect, which means that it’s very hard to get an accurate picture of dangerous side effects of all prescription drugs.
Another problem, according to experts, is that when people experience sexual side effects, doctors put this down to the mental illness the drugs are supposed to treat. Of course, sexual indifference and loss of libido is a symptom of depression, but anyone who has experienced the genital numbness caused by an antidepressant, knows with 100 per cent certainty that this is not psychosomatic. Further proof, is that healthy people on drug trials suffer sexual dysfunction, and sometimes after discontinuing the drug. A work colleague confided to me that 10 years ago, as an impecunious student, he agreed to take part in a trial specifically to investigate the effects of an antidepressant on sexual performance. 3 weeks into the trial he was unable to get an erection, and it wasn’t until three months after the trial finished, that everything came back to normal.
Professor Healy thinks that people’s sex lives may be effected a long time after discontinuing antidepressants but they may not even make the link:
“Everything works but just not as well. Rather than absent orgasm, they have muted orgasms. They wonder if they are imagining it. Or if this is something to do with aging”.
38-year-old Cara, feels her life has been blighted by antidepressants. She was in her final year of University when she was prescribed first Prozac, then venlafaxine for exam stress. She had a severe reaction to both, and was only on them for three months. She expected her ability to orgasm to return once off them. That was 17 years ago, and nothing has changed. She feels that this has completely ruined her chances of having a relationship
“There have been lots of men who have been interested, but I know I’m not capable of having sex, so I don’t get involved. People are always asking why I haven’t got married and had kids and I’m too embarrassed to tell anyone the truth.”
Cara’s doctors insisted her problem was psychological and so referred her for psychosexual counseling;
“It was so frustrating because everyone insisted this was caused by a childhood trauma. I know for sure it was the SSRI’s because everything was fine before, and then things just stopped working”
To get an idea of the impact this condition can have, you only have to look at some of the postings on the Internet support group SSRIsex that has 3800 members, all of whom are suffering sexual side effects from antidepressants after discontinuing treatment.
The most sobering post, is the suicide note of a 28 year old man who killed himself in November 2016.
I love life (friends, family, doing stuff) very much…and this has been very hard on everyone. I cannot express how sorry I am about this decision, I am too scared to live a life in impotence and disability.
It is very important to have someone that you can love and who loves you back, on real human terms. I had that once, so my life was not meaningless. But I cannot feel that feeling anymore, whatsoever happened to my brain is not my fault. It is the Lexapro (escitalopram) I will not concede this FACT to the simplicity of ignorance and the “your just depressed” argument. My dick doesn’t work anymore. I have no libido. I can barely remember why I liked things like music and perfusion. Do not let them convince you that this is just depression. That is the easy way out of trying to understand a real problem. These drugs are the problem. End of the story.
If you are suffering from PSSD, you can report it to us by completing a RxISK Report, even if you aren’t interested in the causality score or taking the report to your doctor.
Please provide as much detail as possible, including the dates that you started and stopped the drug.