'My dad started spying on my mum' - the drugs causing sexual urges
James's case is one of 50 the BBC has now been contacted about, the majority concerning men being treated for movement disorders whose behaviour changed dramatically after being prescribed medication from a specific family of drugs. Often, behaviour changed after many years of taking the medicines at increasing doses, the men told us.In March, we revealed how women had not been warned by doctors that taking the same type of medication for restless leg syndrome (RLS) could cause them to cruise for sex and gamble compulsively - placing them at personal risk and ruining their finances, careers and relationships.Many of the cases we have now learned of involve the exploitation of women and children. These include:
A man who was convicted of child sexual offences after abusing a childAn octogenarian who says he has become addicted to pornography including bestiality and child abuse imagesA father of three children who said the drugs left him needing to have sex up to seven times a day - and caused him to walk out on two marriages when partners could not satisfy him
All three men said they had had no previous history of such sexual behaviour before taking the drugs. They also said they felt profound shame about their behaviour but believed the medication helped their conditions.Other men the BBC spoke to said they did not want to take themselves off the drugs because the medication had led them to discover new sexual interests - which are legal and consensual - and because they enjoyed their increased libido.One married grandfather in his 60s has begun crossdressing and has entered into online relationships with men. Another man says the drugs disinhibited homosexual feelings he had not previously explored.Prescription records show that some of the men we spoke to tried reducing their dosage but all felt it had negatively impacted their health.The Ropinirole that James takes belongs to a family of drugs known as dopamine agonists, which are prescribed for Parkinson's, RLS, pituitary tumours and other conditions.The risk of impulsive behaviour side effects of dopamine agonist medication have long been known - but the BBC has discovered that doctors are still not warning all patients who have been prescribed the drugs for a variety of conditions.
In March we revealed how British drug company GSK had found a link between Ropinirole and what it called "deviant" sexual behaviour - including paedophilia - in 2003.GSK told the BBC it had shared these findings with health authorities, included this safety advice in medication leaflets, and conducted extensive trials for the drug which has been prescribed for 17 million treatments.But warnings about such behaviour were not included in leaflets until 2007 - and, even now, only specify "altered" sexual interest and "excessive" or "increased" libido as risks.Safety advice about the medication's "toxic" side-effects needs to be strengthened immediately because their impact can be "devastating", according to the acting chair of the Health Select Committee, Labour MP Paulette Hamilton."Nine out of 10 people do not read what is on those leaflets," she says."And if you do read it, what does it mean by altered sexual interest? I haven't got a clue."
The drugs work by mimicking the effects of dopamine, a natural chemical that helps transmit messages in the brain, such as those governing movement. Dopamine is also known as the "happy hormone" because it is activated when something is pleasurable or we feel rewarded.Dopamine agonists can over-stimulate such feelings - helping sufferers of some movement disorders which may be caused by low levels of dopamine. But they can also diminish the appreciation of consequences, leading to impulsive behaviour - according to academics.The medication can also actually worsen existing symptoms of restless legs - according to dozens of the people who spoke to the BBC - sometimes causing an uncontrollable urge to move in other parts of the body. This is a well-documented risk for those who take the medication over a prolonged period, and is known as augmentation.
If you have more information about this story, you can reach Noel directly and securely through encrypted messaging app Signal on: +44 7809 334720, by email at noel.titheradge@bbc.co.uk, external or on SecureDrop
The BBC has also learned of concerns about two studies that looked at the ability of another dopamine agonist drug - Rotigotine - to tackle such exacerbation of health conditions. Both were sponsored by the drug's manufacturer, Belgian firm UCB.We have been told that senior officials at the company repeatedly dismissed evidence of augmentation caused by Rotigotine, during the first study in 2012.One of its authors, Dr Diego Garcia-Borreguero, says UCB staff sat-in on and discussed findings with academics. He says the interference was "subtle", but that the published results were not impartial.The BBC has also discovered that eight out of nine authors of a second Rotigotine study in 2017 had been paid at some point by UCB - and that five of them were direct company employees.The paper's conclusions - that Rotigotine was effective in treating augmentation - are "ridiculous", according to Dr Andy Berkowski, a neurologist who has co-authored clinical practice guidelines for the treatment of RLS in the US.He says data shows that more than 50% of the patients stopped taking the drug during the study largely because of adverse events or a lack of effectiveness - and more than half of those who completed it required an increase in dosage, potentially because of the worsening of their RLS symptoms.UCB says its studies were unbiased, underwent independent peer review, and that authors who were its employees, or who it had prior affiliations with, fully complied with guidelines on disclosing conflicts of interest.It said that Rotigotine's effectiveness was proven in multiple trials and most patients who completed its 2017 study experienced a significant clinical improvement. This corresponds to 37 of the 99 patients who began the study.
A list of organisations in the UK offering support and information with some of the issues in this story is available at BBC Action Line.
Dopamine agonist drugs were prescribed nearly 1.5 million times by GPs alone in England last year, according to published data seen by the BBC.Another drug, Aripiprazole - a partial dopamine agonist used to treat mental health problems - is also known to cause impulsive behaviours. It was prescribed for more than 1.7 million treatments in England alone last year, often to younger patients.One patient taking the drug told us his compulsive gambling had become so bad that he was stealing to fund his habit. The mother of another believes the medication caused her son to expose himself in public.The UK's drug safety regulator, the MHRA, says it has no plans to change its warnings about dopamine agonist drugs.It previously told the BBC that sexual impulses vary and a general warning about activities which may be harmful is included.The Royal College of GPs said its updated curriculum - which is used to train doctors and will be published next month - will now include the monitoring of impulsive behaviour side effects for RLS, thought to affect between 6% to 17% of patients.A side effect can be considered to be "common" when it affects just 1% of the people who take the medicine, according to health guidance body NICE.The Department for Health and Social Care did not comment.
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I wanted to go to the natural birthing suite, where you could lie in a double bed with your partner, and have your baby in a pool. I was terrified of being dragged through one procedure after another, of having my body needlessly decimated – only to greet my son as a shell of myself in a noisy ward where everyone was screaming. But in my state, I had little means to communicate. And I felt so certain that he was going to be OK. So I lied. 'Sure, I can feel him,' I said. Sometime later – maybe hours, but probably less – I ended up going to the ward anyway. That is when we found out Mo had died. They traced a wand over my gelled-up tummy, trying to will a different answer into existence. When they turned the screen towards me, it was like Mo had gone floppy: no longer the animate, sturdy, little figure that responded to prods and presses. Instead he swayed lifelessly at each prompt like an idle jellyfish. 'I'm very sorry,' said the senior doctor who had come in to look at the screen. I do not remember his words after that, just that our baby had died. I did not let out an anguished scream. I did not cry. I just felt sluggish and unavailable. I can still recall the exact feeling: like hot concrete was being poured down me, leaving me stuck in place. 'How can you tell me that?' I repeated blankly for the next few hours. When the clumsy anaesthetist came in around 3am – he looked about 24, with glasses that magnified his terrified expression and long limbs that accentuated the sense that he was out of his depth – I asked him to knock me out and cut me open. He concurred that I had chosen the best course of action. So I went to sleep. At some point between early morning and dawn, I turned sheepishly to Louis to ask: 'Lou, what will happen when he comes out? Will you look?' 'I don't know,' he said, conveying, in one expression, all the confusion and bewilderment that I felt. 'You have no good options here,' our consultant told us. 'But some options will be less bad than others.' It was around three in the morning, several hours after we had been admitted to the ward. I was still having contractions, with no pain relief other than gas and air. I tried to take in our options. The more involved we were in our son's birth, she explained, the more we would be able to process his death. No part of me wanted to deliver vaginally – the thought of Mo's limp body between my legs too much to bear – so I opted to have a C-section, but to stay awake. 'There is one more thing,' she said. 'You have to meet your baby. It is up to you how you do that, but you have to do it.' She gave us choices: they would bring Mo into our room in a crib, and we could hold him and dress him if we wanted. If we found that too hard, we could just look at him from a distance. The hospital had a special ward for babies who had died where we could go and visit him. We could keep doing so for as long as we liked; his crib would be temperature controlled, so he would continue to look alive, or somewhat alive, for a few days. To my great shame, just a few hours earlier, I had convinced myself that I could forgo meeting him. Perhaps I could go to sleep, have him disposed of, pretend like my entire pregnancy had never happened. 'You can't love somebody you've never met,' I told myself. I even told myself that, seeing as this pregnancy was a dud, I could do better on the next one – like my son's death was akin to a failed test. That the hospital gave us no choice about meeting him was a kindness I could not yet comprehend. I did not know it then, but if I had not met Mo, I would have found the experience of losing him all the more disembowelling. But I was also terrified. Horrified, even. I learned somewhere that smells trigger some of the most profound emotional responses. What if he smelled rotten? What if he looked weird? Contorted? Sick? There are so many incongruous things you have to hold side-by-side when your baby dies. Cradling him dead; carting him around in a temperature-controlled crib until you can comprehend that he was never truly alive; and trying to feel the tender, warm, totally accepting feelings you are meant to feel towards a baby towards a corpse instead. These conflicting realities were one hell of a thing to comprehend. Everything in your body tells you to run a mile from death. Yet here I was, being confronted with the decision of whether to hold, kiss and dress it. Meeting my son was, simultaneously, the worst and the best moment of my life. We had waited eight hours to go into surgery, constantly bumped to the bottom of the queue because the other people who needed emergency C-sections were most likely going to end up with living children. During this lull, I was so determined not to deliver vaginally that I convinced myself I had the will to keep Mo inside my tummy. If it was not so sad, it probably would have been funny: the sight of me, clenched in a permanent Kegel, a constipated look on my face, refusing to tell anyone whether or not my contractions were progressing. But I made it to the theatre. Around 10am, I was wheeled into a room where what seemed like a dozen doctors were waiting. They stuck a long needle in my back and sprayed a cold liquid on my body, checking if I could feel it to confirm my lower body was numb. I felt tugging, similar to when the dentist roots around your mouth to pull out a tooth while you are under a local anaesthetic – only in my abdomen. Next thing I knew, the doctor had Mo in her arms. 'Poppy, I can see him. He is gorgeous. I am going to clean him up, and then you'll get to meet him,' she said. Until that point, I still believed they might find him alive. Instead, Louis sat by me, holding my hand and crying. I stared blankly at the ceiling while the surgeons cleaned up underneath a tent they had created from the waist down, preventing us from seeing anything. We were taken into a private room, and Mo was carted over in a little see-through tank. 'He's very beautiful,' one of the midwives said. I found her words surprising: so gentle and accepting like a tonic, slowly bringing me back to life. I was afraid to look. But it was comforting to watch Louis, who did not hesitate, immediately hugging Mo as you would after a normal birth. He kissed him, put a nappy on him, and dressed him in dungarees and a dinosaur T-shirt meant for a six-month-old – because Mo, to our surprise, was quite tall. I fumbled when Louis passed him over, my mind and my body still disconnected. But then there he was. This perfect boy that I had grown from just a seed, his face arranged by our DNA; billions of pairs, prudently linked like figurines in a paper chain. He had this mouth just like mine: shaped like a wooden bow, full, rigid and curved. We wowed at his roman nose, far too adult-like for his soft baby face. And I softly opened the lids of his eyes to see his eye colour. We were with Mo for half an hour or so before family started coming in. And in that time, we somehow became more human. We passed our baby around and watched him being greeted with deep sorrow, but also curiosity and delight, by all the people who had waited so long to meet him. When everyone had left, Louis perked up with a cheeky grin, and asked: 'Do you want to see something funny?' I did not think that anything funny could happen at that moment. With a little chuckle, he lifted Mo's legs to reveal some unexpectedly huge testicles. 'Who do you think he got those from?' he asked. And we erupted into fits of laughter, if only for a short while. After meeting Mo, I emailed HR from the toilet cubicle next to my bed: the sort of thing a deranged person, mad from loss, does when her primal brain reminds her that some self-preservation is necessary to survive. I let them know I had lost my baby in delivery and asked them to make sure my maternity pay still came through. We stayed in the hospital for a few days while I healed, waiting and moving slowly. We visited Mo on what they called the angel ward – although he was the only baby in it – never staying too long in case we got too accustomed to the idea of him. His pretty little face. His wrinkly, too-long fingers. And then we got ready to leave. During my pregnancy, I spent a lot of time sitting in the waiting room, on the other side of where all the action takes place. It was always such a fun moment when families would burst through the double doors, triumphantly, baby in hand. I had been excited for the day we did the same. Instead we walked out empty-handed: me, Louis and the sweet midwife from the antenatal class trailing behind us, all of us weeping. Amid the paperwork were questions about what we wished to do with Mo's body. We felt too fragile to think about our son being picked at and jostled in his death to say yes to anything. So to begin with we said no to it all: photographs, postmortem, investigation. But we began to regret not getting a photograph. One of the hardest things about Mo dying before he was born is that I knew so little about him. I do not know what his smile would have been like, how his cry sounded, or whether his eyes would have stayed blue or turned brown in the end. I suddenly wanted to see him from every angle, to ensure against the fading of my already very finite memories. So a week after we got home, we called and asked if we still had time to have pictures done. A volunteer photographer called back. He was from a charity that handles the delicate work of taking photos of stillborn children, making portraits of them as precious as if they were born alive. He said he would have a look at Mo, who was still in his crib at the hospital, and see how much he had deteriorated to discern if it would be appropriate to take a picture. We received a little USB stick in the post just in time for his funeral. I knew it was coming and awaited it like the most exciting gift. I just could not wait to see Mo one more time. And when I did, I thought: There's our boy. He looked so cute: his cheeks all puckered up in rest; his head less cone-shaped than after delivery; his wavy, dark hair flicking up around his ears and at the top of his head like Angel Delight. I kept the photos on a computer and gave myself a daily allowance of time to look at them, before eventually putting them on my phone and looking at them whenever I wanted. I wanted to show everyone – as parents are wont to do after having a child. But I pained over how, exactly, to ascertain whether people wanted to see photos of him, or whether all they would see was a dead baby. Mo's body was too small for a coffin, so he went below ground in a Moses basket instead. We drove with him in a black cab to a cemetery a few miles down the road. Only Louis and I attended. We played a few songs, and I was surprised to find myself beset with grief listening to 'Father and Son' by Cat Stevens. It is not a happy song, but I guess I was most looking forward to the time in life where Mo had his own mind and disagreed with us. When they lowered him into the dirt, I watched until I could not any more. I had always marveled at how I had built Mo's spine: a structure so sturdy and yet so intricate. Now all I could imagine was it being crushed beneath the soil. Later people came around for the wake. I had rehearsed my speech so many times that I did not cry when I gave it, although everyone else did. I read out letters from friends who had watched us wonder at Mo while he was growing inside me; friends who felt like they knew Mo too. People signed a book that we left in his bedroom with goodbye messages. At the end of the night, I think we went to bed smiling. While working on this piece, I had to rework several sections because they were written in the second person. 'The reminders jump out at you, evil in all their mundanity,' I wrote about experiencing my home like a house of horrors, an assault course in which I would constantly have to duck and dive baby nostalgia to make it through a single day. But these things didn't jump out at you. They jumped out at me. Sleights of hand such as these reveal something: in my case, that I am still so dissociated from losing my baby that I cannot describe it as having happened to me. My mind does backbends to keep everything I went through at arm's length – even as the rational part of me makes all the right, therapised sounds of acceptance. This is one of the many layers of self-deception I have had to peel away since Mo died. It has been two years, and I still have not fully been able to take it all in. I had been proud of myself in pregnancy, feeling strong and functional. Something about reaching this rite of passage and passing all of the necessary milestones without concerns triggered all of my childlike impulses: the need to do well and be praised. So when I could not deliver Mo safely, it registered first as a grave failure of my body. I pictured all of the women throughout time, without medicine or hospitals, sometimes in war zones, crouching in bushes and on toilet seats, birthing babies. It's a ridiculous depiction, but next to it, I felt pathetic. In the following months, whether or not my body would fail me again became a constant preoccupation – as did finding out why it had done so in the first place. I spent time obsessively Googling things such as: If you have a stillbirth once, will you have one again? Why couldn't I birth my baby? Underlying conditions that cause stillbirth My body became a site of grief, a sad and empty space beset by the postpartum symptoms I still had to go through – without the salve of a child to go with them. As my uterus deflated over the course of the next few weeks, a pain similar to contractions ensued, landing me in a strange limbo where part of me believed Mo was still coming. Each fake contraction reminded me of being in labour, that forlorn resignation I felt when I knew he had died but had to continue anyway flooding back. I jacked myself up on morphine in the hospital and a concoction of other drugs at home, wanting to ward off any contraction-like feeling before it happened. I vomited and shook and had migraines that left me laying stationary with a towel over my face for hours on end. But I was also healing. I focused on walking and sitting up and getting stronger. It was all so preoccupying; I felt I was attending to my grief. And to some extent I was. But there was far more to reckon with than what had happened to my body. Once I was mobile enough to do anything other than lie around, the months ahead of me stretched out, long and unwinding. I felt the wind knocked out of me every time I remembered there was more than today to get through. Then I would remember that I would feel some version of this for the rest of my life, and I would feel my brain whirring around in my skull. 'Let's leave that for now,' I would have to tell myself. But the reminders were so quotidian. I sobbed at the sight of a bright purple yoga ball in our living room. I had incessantly bounced on it in late pregnancy, willing my baby out, and then during early labour to ease the pain. Now, it seemed to tease me. A jolt of sorrow hit me when my husband mentioned eating the food we had lovingly stocked in the freezer, back when we imagined this time would be spent bleary-eyed, cuddling with the baby, unable to cook for ourselves. The hospital bag we had so expectantly packed remained the same way for over a year – a museum of our hopes kept perfectly intact. We kept Mo's room as a shrine to all the things we had hoped to dress him in (as well as the many strange grieving gifts we got and could not bear to explain to new people). And although I unsubscribed from all the email reminders of what my baby's development should be at this stage, it took a long time for me to stop thinking of months in relation to how old Mo would have been. I entered a phase of monk-like piety ('I will never wear lipstick, like a normal person who hasn't lost her baby would, again; I will never sit on the rocking chair where I planned to feed him again; I will never watch Barbecue Showdown, which I watched before going to the hospital, ever again!'), followed by toxic positivity ('I will always love these stretch marks! They're the only thing of my son I have left!'). And although all this was bracketed by profound sorrow (a guttural scream in our little toilet by the kitchen that opens to the garden, door ajar, facing outside with abandon while I cry-peed), I still found it hard to come to terms with the depths of my aching. I managed to convince myself that my pain was somehow less torturous because Mo had not been born – that I couldn't possibly know the pain of losing a child, because I had not had one. I would surprise myself with slips of the tongue, when I would let out a wail, saying something like: 'I just want my baby' or 'I miss him' – before hastily rearranging myself, assuming I had reached for the closest, cliche expression that did not accurately reflect my own experience. But the truth of how I felt was all there in my dreams, where I would see babies coming back to life, only to wake up in that foggy gold glow, desperate to return to slumber. And each night, I would go to bed with my most desperate thought. Sometimes, I still do: We were so close. In the daytime, I was consumed with guilt. When I was pregnant, every decision I made haunted me. No pain relief except Tylenol – but only if necessary. Hot baths, but with my hands, feet and head lifted out. Running was accompanied by fastidious watch-watching, to ensure my heart rate never stayed consistently above 145bpm (all followed by a days-long panic that I had caused great harm). But even though I had tried so hard to follow the right rules – the rules that were backed by science! – I could not shake the idea after Mo died that I had killed him somehow. I would find myself raking over the past, searching for tiny clues amid the piles of innocuous memories. I became convinced I murdered Mo when I asked my husband to use a massage gun on my lower back during labour; that I was negligent for not noticing the peak in my hunger around weeks 38 and 39, which were a sure sign he was starving to death. I scrolled through photos on my phone like a maniac, searching for symptoms that I should have noticed: was my bump hanging too low? Was that the last time I felt him kick? Whenever I did this, I felt like I was watching a horror movie, wanting to scream at my past self: 'Get out! Make a different choice now before it's too late!' My body hurled itself out of bed in the middle of the night, awake with thoughts: I was five days overdue! Was he still alive when we got to the hospital? Two years later, I still spend whole days swimming through a list of possibilities – each one ending with a living Mo. What if I had gone in earlier? What if I had taken the epidural? Why didn't I just get induced? My decision to lie to the midwife is still part of the everyday flotsam I fish out of the 'Reasons I Killed My Baby' swamp in my brain. I replay endless scenarios where I told the truth, was whisked to the ward and met Mo in my arms – his eyes open instead of closed. My rational brain knows that I could not predict what happened. But in the place where my mind and my heart connect, I still believe that I killed him when I lied. For this, I cannot believe my husband does not hate me. This was not my first rodeo when it comes to unexpected, mind-bending, heart-wrenching life affairs; I have been around the block once or twice when it comes to the shock of early loss. And so when I lost Mo, one of the things I was most immediately furious about was that I had not seen it coming. What an idiot, I thought, for naming my child as if nothing might go wrong, for so naively bestowing him with a personality and tastes ('He loves raspberries! And the granola with the chocolate and honey clusters!' I told my friends, certain his love for sugar, inferred by his kicks, meant he was an extrovert). But at some point, things started to feel lighter. My friends arrived every evening with beers and takeout and anecdotes about the world outside that were more interesting than mine and Louis's slow-paced, unmoving days. People sent so many flowers that we could not sit at our dining table for a month. We received so many hampers it is a mystery we did not grow larger than we did. And all of these things gave me an appreciation of earnestness: a trait I had previously despised. One of the things I have learned since his death is that I can be a cynic as a defense mechanism: I am afraid to appear humorless, or to look like someone who believes good things will happen to them, because I will feel like an idiot when they ultimately do not. I complained often in my pregnancy about all the things I thought would ruin me – how I would be awful on no sleep; and how I did not want to go to the sing-song play groups that I found moronic; and how I was just maybe not the kind of woman who is that into being a parent – because I was scared of stating my hopes. I was afraid to admit that, actually, I had always been compelled by – and perhaps even well-suited to – parenthood. Losing Mo made me realize that all of my guardedness did not make the pain more bearable. If anything, I wish I had more openly loved him, that I had been even more vulnerable in my willingness to accept how much of it I thought I would love. I could have sat in that joy a little longer before he was gone. Don't get me wrong – I do not think all of motherhood is a breeze. My second son, Kamil, is a delight, but while it's not like I enjoy wiping his snot or pulling a piece of grass out of his poo, I have become a much more honest person about the glorious parts, much more willing to admit that I experience them. There was a point when I found it strange to listen to people share how they had been shaken by Mo's death, too. How they had taken the day off work or broken down into tears or spent a week feeling distraught after they heard of what happened. And then, one day, that changed too. I think I found it hard to see how upset people were at our loss, because it brought home how universally damning it was. Part of accepting that means being able to feel truly sorry for yourself, and that's something I've always struggled with. Soon, instead, I started to feel seen when people told me they loved Mo, and they mourned him too. 'Grief is just love with nowhere to go,' someone told me. And so I began to grieve him and love him more openly. To listen to people's stories about how sorry they were, without wanting to correct them, or feel angry at their pity. 'Mo's life would be full of whole worlds,' Louis said to me one day, talking about all of the people, places and moments that he would have known. It was such a tender thought. Such a specific thing to miss without ever having experienced it. It sort of sums up what it was like to miss our unborn child. I do believe Mo's life contained whole worlds. From the moment he existed, he changed us, and watching our elation changed other people, too. My friend wrote a letter that we read out at his funeral about how her love for my son grew in proportion to my ever-expanding tummy. She admitted how scared she was that we were going back to London to give birth and start a new chapter, and how that would put thousands of miles between us. But she also explained how, ultimately, that fear turned into admiration. 'I started to see you as someone who would expand, not shrink from me and the rest of the world. Sometimes, I could see glimpses of how you'd mother Mo: hugging him, telling him off, feeding him all kinds of different foods at six months,' she wrote, continuing: 'A baby at one day old hasn't done much, on paper … Another way to look at it, though, is that a baby at one day old – even if he never had the chance to take a breath – already changed everything.' It was Mo's second birthday this month. So on 15 July, we bumbled over to his grave with Kamil. After we first buried him, I found it overwhelming how quickly the cemetery got full: a reminder that this ever-so-delicate, unique experience we were going through was actually not very unique at all. I hated looking at the balloons by graves, marking third and 13th and 33rd birthdays. What a way to spend a birthday, I thought. But when I plopped Kamil down on the dirt, where his brother lay underneath, he laughed and smacked the ground in glee. He seemed to say: 'Actually, this is a great way to spend the day.' That evening, we went home, and played the songs from Mo's funeral. Our house, which one year ago had felt so empty, suddenly felt so full. And when it started raining outside, we scarcely even noticed.
