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I am Luke. I’ve been suffering with PSSD for more than 10 years. My life has been drastically altered. I am now an active member of the PSSD UK patient group and PSSD Network, through which I help raise awareness and support fellow sufferers in the hope that our situations can improve and a cure can be found. Post-SSRI sexual dysfunction Post-SSRI sexual dysfunction (PSSD) is a disorder in which individuals, who have been administered selective serotonin reuptake inhibitors (SSRIs) or other serotonin reuptake-inhibiting (SRI) drugs, experience persistent changes in sexual function and/or genital numbness for an extended period after ceasing to take the drug. Although it is most commonly caused by SSRIs (a widely prescribed group of antidepressants), cases have also been reported following the use of serotonin-norepinephrine reuptake inhibitors (SNRIs), SRI tricyclic antidepressants, SRI antihistamines, tetracycline antibiotics such as doxycycline, and analgesics such as tramadol.[1] Antidepressants have been known for some time to impact sexual function (while being taken) and this risk is included, to some extent, in the medication information. However, the risk of long-term impact to sexual function, after a person ceases to take the medication, has lacked widespread recognition for many years despite being highlighted by patients and researchers around the world.[2,3,4] Awareness remains poor despite some formal recognition In 2019, the European Medicines Agency formally recognised that sexual dysfunction can persist beyond discontinuation of SSRI and SNRI antidepressants[5]. The Pharmacovigilance Risk Assessment Committee stated: “Sexual dysfunction, which is known to occur with treatment with SSRIs and SNRIs and usually resolves after treatment has stopped, can be long-lasting in some patients, even after treatment withdrawal.”[6] Despite this, awareness is still very poor and formal recognition still does not exist in most countries. Although some urologists and sexual medicine specialists seem familiar with the condition, many general practitioners have not heard of PSSD. Psychiatrists often dispute the legitimacy of the illness or claim that it is exceedingly rare, but don’t have any data to prove the prevalence. For a long time, PSSD has been dismissed by many doctors as being a psycho-somatic illness – for example, the result of untreated depression. It is still typical for patients to be disbelieved like this, despite the clear distinction between the diagnostic criteria for clinical depression and the diagnostic criteria that has been developed by researchers for PSSD.[7] The latter outlines two ‘necessary’ criteria for PSSD to be diagnosed. (1) Prior treatment with a serotonin reuptake inhibitor. (2) An enduring change in somatic (tactile) or erogenous (sexual) genital sensation after treatment stops. ‘Additional’ criteria includes: Enduring reduction or loss of sexual desire. Enduring erectile dysfunction (males). Enduring inability to orgasm or decreased sensation of pleasure during orgasm. The problem is present for ≥3 months after stopping treatment. Also listed are both sexual and non-sexual symptoms of PSSD as per below: genital pain reduced nipple sensitivity decreased or loss of nocturnal erections (males) reduced ejaculatory force (males) flaccid glans during erection (males) decreased vaginal lubrication (females) emotional numbing depersonalisation other sensory problems involving skin, smell, taste or vision. The lack of awareness amongst the medical community also means that there is no available treatment or support for PSSD sufferers, who will often turn to the internet for help. Many sufferers, desperate to improve things, end up trialling a variety of drugs and supplements, some of which seem to make symptoms permanently worse. Medication labelling and communicating risk Only Canada and the EU countries (plus post-Brexit Britain) require any warning of persistent sexual side effects on the drug labels. In the rest of the world, there are still no warnings about persistent sexual side effects of SRI antidepressants. Non-English speakers have additional challenges finding information about PSSD, even online. With so many doctors still unaware of the illness, the risks are frequently not being communicated to patients, meaning they can’t possibly give informed consent when taking antidepressants as prescribed. A community abandoned (Image: PSSD Network photo campaign) PSSD sufferers in our communities are absolutely desperate. They feel lied to, mistreated and abandoned. We know from those with lived experience that PSSD often includes complete loss of libido and ability to function sexually, complete emotional dysfunction (anhedonia) and cognitive dysfunction. This frequently results in the breakup of existing romantic relationships and extreme difficulty in forming new ones. PSSD sufferers can find it hard to bond and connect emotionally with others due to emotional dysfunction, and struggle to find any kind of enjoyment in activities that were previously enjoyable. It can cause alienation from friends and family. Some are unable to continue working due to severe cognitive impairments. They often describe it as like being chemically castrated and lobotomised, bearing no resemblance to the experience of suffering clinical depression. Despite PSSD being a result of a prescribed medication, sufferers frequently report being gaslit by doctors, who have typically claimed that their complaints are really symptoms of underlying depression. However, patients prescribed SRI antidepressants for conditions as diverse as irritable bowel syndrome, nerve pain and premenstrual dysphoric disorder have also developed PSSD. These harmful attitudes, and the lack of any known treatment or available support, makes PSSD sufferers feel like there is no hope. Some have ended up taking their lives as a result of PSSD, despite never having been suicidal at any point in their lives previously. Improvements needed Thankfully, further research[8] and an increase in media coverage in the UK,[9] including a recent Panorama documentary, are helping draw attention to this issue and change attitudes. There needs to be further action taken if we are to see long-lasting improvements in the care and treatment of patients with PSSD. I would like to see: Widespread acknowledgement of the condition. Doctors provided with up-to-date information and training (informed by lived experience) on the dangers of antidepressants and how to support patients. Warnings on instructions for the medications updated and prescribing clinicians alerted to ensure patients are adequately informed. An awareness and media campaign launched targeting patients, prescribers and the public. Funding secured for research that helps us gain an understanding of the underlying pathophysiology, identification of a diagnostic biomarker and, eventually, a cure for PSSD. Doctors listening to patients so they can understand how PSSD is a life-changing condition and be able to refer to support services. PSSD is a modern-day tragedy which devastates the lives of sufferers and their families. There are people with this condition who still don’t know that there is a name for it and more of them come out of the woodwork with each new media mention. It is vital that the medical community begins listening and supporting sufferers, and researching a cure before more lives are lost. How you can help I’d encourage you to visit the PSSD Network website to help you understand PSSD and our campaigning work. Clinicians can offer their support by watching this powerful podcast made by PSSD sufferers, discussing the issue with their healthcare organisation and by joining the list of doctors and specialists acknowledging the condition. Researchers can get involved by contacting PSSD network or RxISK. Patients can speak out about PSSD using the initiatives under the ‘take action’ section of the PSSD Network website. Anyone can donate to research via the RxISK website or PSSD Network. References Healy D, Bahrick A, Bak M et al. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med. 2022;33(1):65-76. Healy D. Post-SSRI sexual dysfunction & other enduring sexual dysfunctions. Cambridge University Press, 2019. Access online 18/09/2023. Healy D, Le Noury J and Mangin D. Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases. Int J Risk Saf Med. 29 (2018) 125–134. PSSD UK. Our stories. Accessed online 18/09/2023. Pharmacovigilance Risk Assessment Committee (PRAC). New product information wording – Extracts from PRAC recommendations on signals. European Medicines Agency. 2019. Lane C. Post-SSRI Sexual Dysfunction Recognized as Medical Condition. Psychology Today. 2019. Accessed online 18/09/2023. Healy D, Bahrick A, Bak M et al. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med. 2022;33(1):65-76. Ben-Sheetrit J, Hermon Y, Birkenfeld S at el. Estimating the risk of irreversible post-SSRI sexual dysfunction (PSSD) due to serotonergic antidepressants. Ann Gen Psychiatry 22, 15 (2023). 9. RxISK. Media Articles: PSSD & Related Conditions. Accessed online 18/09/2023. Do you have an experience or insights to share? Have you ever experienced adverse and/or long-lasting side effects of a medication you were prescribed that you didn't feel you adequately warned about beforehand? Perhaps you are a prescribing clinician who can share some of the challenges and complexities involved in medication safety? What did you think of the points raised and calls to action in Luke's article? Please comment below (sign up first for free) or get in touch with us at content@pslhub.org to tell us more.

Aminata* didn’t plan to become pregnant at 15. When her mum died, she was sent to live with her aunty in the country’s capital city, Freetown, and felt from the outset that she was not welcome. Her cousins were attending school but there was no money to send Aminata, and instead she was expected to fetch water for the household every day, often spending four or five hours in the queue. When Patrick, one of the men who ran the pump, asked her to be his girlfriend, saying she could jump the water queue and he would also pay her school fees, she felt that she could finally get back on track. No-one had ever talked to Aminata about sex, contraception or pregnancy, and when she missed her period she was just pleased not to have to bother her aunty for sanitary pads which always made her feel like a burden. She discovered she was pregnant one evening several months later when her aunty noticed her changing body and confronted her, screaming that she had disgraced the family and would have to leave. Her few belongings were thrown into the street and she was on her own again. Patrick had told her he loved her, and she was sure he would be happy, so she climbed the hill to the water pump to tell him the news, only to be told he had already heard and left Freetown earlier in the day with no explanation. Knowing there was nowhere else for her to go, Aminata asked her cousin if she could sleep in his car, where she lay down and cried. The months that followed saw her finding different places to sleep - an empty market stall, a friend’s floor, an abandoned building. She would eat meals here and there in exchange for carrying water, washing pots and occasionally having sex with men she barely knew, who took advantage of her desperation. When she went into labour at eight months, Aminata was anaemic, malnourished and had a sexually transmitted infection. By the time she was taken to the hospital by a neighbour of her aunt’s, her baby was already dead and she was bleeding heavily. The 500ml of blood that she lost would hardly be noticed by a healthy, nourished woman, but for Aminata it was catastrophic. In a culture where blood is donated in an emergency by a relative, Aminata had no options and no money to pay, and died that night with her unborn baby. This is a true story, but it is not a story about just one girl; it describes the experiences of many pregnant girls in Sierra Leone. I lived in Freetown from 2001 to 2004, working with Lifeline Nehemiah Projects with children affected by the 10 year civil war, so was only too aware of the statistics that make Sierra Leone one of the most dangerous places to give birth. I saw the issues the young people we were supporting faced as they started to have their own families. A survey we did in 2015 in Eastern Freetown showed a 1 in 10 incidence of maternal death for girls becoming pregnant under the age of 18—in the UK the figure is 1 in 10,000. There are many reasons for this high death rate. Upstream social determinants such as poverty, gendered social norms, sexual coercion and stigma mean that girls have little agency with their sexual and reproductive lives, and once pregnant they are almost always thrown out of home and struggle to eat regularly or prepare for birth. Disrespectful care at health facilities means that they often do not take up antenatal care and are at very high risk of death from anaemia, bleeding, eclampsia, infections and prolonged labour leading to fistula.[1] I got together with my friend Mangenda Kamara, a gender studies specialist who lives in Freetown, and we looked at what we could do to help these girls. We realised that what they needed was a supportive, consistent adult to make sure they were safe and able to access maternity care as well as having the means to eat well in pregnancy and provide for their babies. We developed 2YoungLives as a simple, scalable, sustainable solution to this intractable issue. It is a mentoring scheme which pairs women known for kindness and compassion with three vulnerable pregnant girls. The project provides the girls with money to start a small business which the mentor supports them to run, allowing them to eat well in pregnancy. As a ‘loving aunty’, the mentor helps the girls to register for antenatal clinic, going with them for check-ups and being a birth partner when the girls go into labour. She provides emotional support, and gathers the girls to eat together, encouraging peer friendships. After birth, the mentor continues to support each girl, not taking over but being available if there are problems with breastfeeding, if she needs a few hours of sleep after a bad night, or if the baby is not well, encouraging timely care-seeking and ensuring the baby gets all immunisations. The mentors also promote postnatal contraception, reducing the risk of a second teenage pregnancy with its associated compounded risks. Since we started with our first team of four mentors in 2017, we have grown steadily to six teams—24 mentors in all—in urban, peri-urban and rural districts. We have seen great success in reducing the risk of maternal and neonatal death. Since 2017, the project has mentored over 200 girls; we have had no maternal deaths and a much-reduced rate of stillbirth and neonatal death. In addition, an education bursary grant from King’s College London in 2021 has allowed many girls to return to school or attend vocational training; some are now fully qualified plumbers and electricians. 2YoungLives is now part of an NIHR-funded Global Health Group, a partnership between King’s College London, the Sierra Leone Ministry of Health and Sanitation, Lifeline Nehemiah Projects (the Sierra Leone-based organisation that runs 2YoungLives), Welbodi Partnership and the University of Sierra Leone, and we are about to double our provision by starting a cluster-randomised feasibility trial in six new sites. There is a high level of buy-in from stakeholders—from local chiefs and women’s leaders to Ministry of Health representatives—as tackling teenage pregnancy, child marriage and maternal mortality are all highly prioritised policy areas in Sierra Leone.[2] 2YoungLives improves patient safety by seeing these young women not simply as ‘patients’ on the isolated occasions when they attend the clinic or come in to give birth, but by addressing the social determinants of maternal health and death. Our mentors provide the most basic of protective factors: a relationship with a caring adult. As a result of our mentors' support, the young women we work with are thriving, not just surviving. You can read more about 2YoungLives and how to support its work on the 2YoungLives website. *not her real name References 1 November L, Sandall J. ‘Just because she’s young, it doesn’t mean she has to die’: exploring the contributing factors to high maternal mortality in adolescents in Eastern Freetown; a qualitative study. Reproductive Health. 21 February 2018 2 Palathingal A. National strategy for the reduction of adolescent pregnancy and child marriage 2018-2022. United Nations Population Fund Sierra Leone. 2018

Can you tell us a bit about your own experience of having a copper IUD fitted? In a word - horrific. I am not able to use hormonal contraceptives, so for me the copper IUD is a good solution, plus it lasts for 10 years which is a bonus. However, the insertion of the IUD was excruciatingly painful. I had asked my GP for some pain relief beforehand, but he told me that ‘paracetamol would be enough’. That absolutely did not turn out to be the case for me. The fitting took three attempts, each one more painful than the last. Apparently, I have a tilted cervix which makes insertion more difficult, but no smear tests or doctors notes have ever revealed anything like that to me in the past. In order to get the angle right I had to lie on my side with my leg cocked upwards for a significant amount of time. I have never felt pain like it. Nothing can describe that deep pain as the ‘sound’ (a medical instrument used to probe), hits your uterus. Or the invasive and violating feeling of having your cervix clamped. I was not prepared for it and was shocked at the noises coming from my mouth during the procedure. I was in so much pain that I did not recognise my own voice. It was truly awful. Shortly after your experience, you launched a public survey, what fuelled you to do this? I mentioned my experience to my friends and a few of them also said they had had terrible experiences. That’s a small group of people all reporting terrible pain for a procedure that the NHS describes as potentially ‘uncomfortable’. So, before I started shouting about it, I thought I’d better collect some data to see if my friends and I were anomalies. It turns out we weren’t, not by a long way. What were women telling you in their survey responses? The survey questions focused on pain experience, the pain relief offered and how well-informed people felt they had been. I also included a ‘free text’ section for people to share whatever they felt was important. The stories were unbelievably depressing. Almost 1500 women telling me how much pain they had experienced. I’ve heard people say that it was worse than any vaginal childbirth they went through, or the time they broke a bone or punctured a lung. That’s pretty compelling. There was story upon story of medical professionals, dismissing their pain and making them feel they were being over dramatic about it. What also struck me was the number of women who said they had thought that they were the only one this has happened to, and so didn’t say anything. Or that they had felt an urge to say something, but just wanted to put the whole ordeal out of their minds. That’s a real trauma response and very scary to hear that women are leaving GP office procedures with that experience. What did your data tell you? In short, that we have a problem here. 93% of respondents reported experiencing pain during their IUD fitting, with more than 25% rating their pain as ‘almost unbearable’ or ‘excruciating’ (the highest levels on an 11 point scale) 52.88% reported not being advised to take any pain relief 71.18% said they did not feel adequately informed of what to expect. 95.33% said that they think that better pain relief should be offered. This data tells me that women are not being routinely consulted about this sort of procedure, or that they are not being listened to when they report severe pain. It also tells me that we have a blind spot in the medical profession for women’s pain. There seems to be a culture that the pain and suffering is worth it if the end justifies the means. But surely, we can have the end result with the means being properly managed for pain? Why should women suffer unnecessarily? What do you think needs to happen to improve care and patient experience? If you’re going to put something up into a uterus through a cervix, make sure that everyone is fully informed of what it could be like and that the appropriate level of relief for the individual patient is administered. There needs to be a thorough explanation of the procedure so that women can make informed choices. You can currently choose to accept the risks of the procedure, but at no point are you forewarned of the potential for terrible pain. If there was proper data that told us that X% of women suffered an excruciating amount of pain having the procedure done without pain relief, then women could choose to re-book when pain relief was involved, or to proceed fully informed. Many women say they felt violated by the procedure. I for one most certainly did not consent to be in that much pain. I think that goes a long way to explain the emotional trauma that so many women experience from this procedure. There also needs to be more pain relief available. The procedure should be treated with the gravitas it deserves; aligned with things like colonoscopies in terms of the analgesics and relief offered. And women MUST be believed when they say they are in pain. This gaslighting of women’s pain has got to end. What's next for your campaigning in this area? I’ve set up a petition calling for better pain relief for IUD insertion and removal. Please sign it and help draw attention to these issues. People also keep reaching out to me and offering help which is amazing. I’m working with Patient Safety Learning, clinicians and journalists in this field to raise awareness of my data among the relevant audiences. Caroline Criado Perez (author of Invisible Women: Exposing Data Bias in a World Designed for Men) has been fantastic in pushing for participation in the survey and petition. I’ve even had a medical manufacturer contact me, who are making a device that is supposed to cause less pain upon insertion to tell me about what they do. I’m just going to keep pushing until we see change and improvement for women. Is there anything else you'd like to add? I have been overwhelmed and brought to tears by the stories women have told me. And I feel privileged that they have felt safe enough to share them with me. But I also now feel a responsibility to do something about this situation. So that is what I am doing! Complete the survey here Sign the petition Follow Lucy Cohen on Twitter: @LucyMazuma Have you had an IUD fitted? If you’ve had an IUD fitted and would like to share your experience, please visit our community forum here and tell us how you found the procedure. Are you a healthcare professional involved in IUD fittings or removals? Can you share your insights on the issue? What are the challenges for healthcare workers trying to manage patient pain? Are there any examples of good practice or resources you can share to help drive improvements? Please visit our community forum here and share your thoughts, or contact us at content@pslhub.org Related hub content Is pain a patient safety issue? The normalisation of women’s pain Dangerous exclusions: The risk to patient safety of sex and gender bias How close are we to closing the gender pain gap? Through the hysteroscope: Reflections of a gynaecologist Minister acknowledges patients’ concerns about painful hysteroscopies; but will action be taken?