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Content Article
On the 7 October 2024 Pfizer, in agreement with the Medicines and Healthcare products Regulatory Agency (MHRA), produced a Direct Healthcare Professional Communication which provided a safety update concerning medroxyprogesterone acetate. This article provides a summary of this update. Medroxyprogesterone acetate Medroxyprogesterone acetate is a type of medicine called progestogen. It is also known by the brand names Depo-Provera and Sayana Press. Progestogens are similar to a natural hormone made in the body called progesterone. Medroxyprogesterone works in the same way as natural progesterone, but has stronger effects. The injection stops your body from releasing an egg each month and also makes it less likely that an egg would be fertilised or develop. This can be administered by injection, and medroxyprogesterone can also come as tablets used to treat hormonal conditions including heavy periods, endometriosis, polycystic ovary syndrome and hot flushes caused by treatment for prostate cancer. It also comes mixed with another hormone called oestrogen as a type of hormone replacement therapy, for menopause symptoms. More information can be found on the NHS website here. Meningioma Meningioma is a rare, most frequently benign tumour that forms from the meninges. Clinical signs and symptoms of meningioma may be non-specific and specific to the area of the brain affected. This could include, and is not limited to changes in vision, hearing loss or ringing in the ears, loss of smell, headaches that worsen with time, memory loss, seizures or weakness in the extremities. Safety update This letter states that there is a small increased risk of developing meningioma with high doses of medroxyprogesterone acetate (all injectable and ≥100 mg oral formulations), primarily after prolonged use (several years). It states that for contraception or non-oncological indications: Medicines containing high doses of medroxyprogesterone acetate are contraindicated in patients with a meningioma or a history of meningioma. If meningioma is diagnosed in a patient treated with high doses of medroxyprogesterone acetate, treatment must be stopped. It states for oncological indications: If a meningioma is diagnosed in a patient treated with high doses of medroxyprogesterone acetate, the need to continue the treatment should be carefully reconsidered, on a case-by-case basis taking into account individual benefits and risks. The full letter can be found here. -
News Article
Government accused of misleading claim on health hubs
Patient Safety Learning posted a news article in News
Most integrated care systems lack a women’s health hub offering full services — contrary to government claims — according to research seen by HSJ. In spring last year, the government and NHS England said all systems were expected to have at least one operational women’s health hub in place by the end of December 2024. They were required to provide clinical support and consultations/triaging in eight “core” services. Health minister Karin Smyth told Parliament at the start of this year the objective had been met in 39 out of 42 integrated care systems. But research by the Menstrual Health Coalition found only 14 integrated care boards had established hubs offering all eight core services, as required. The services are: menstrual problems assessment and treatment; menopause assessment and treatment; contraceptive counselling and provision of all methods; preconception care; breast pain assessment; pessary fitting and removal; cervical screening; and screening and treatment for sexually transmitted infections and HIV. The coalition, an alliance of patient and advocate groups, collected information from all ICBs between October and December. Its co-chair Anne Connolly, a GP specialising in gynaecology, said: “Our findings challenge the narrative that women’s health hubs have been successfully implemented nationwide. “While figures suggest that hubs are in place, the reality is that many do not provide the full range of services women were promised… There is now an urgent need for transparency alongside the rollout of women’s health services, particularly as the current funding is short term and lacks the necessary commitment to future-proofing these services.” Read full story (paywalled) Source: HSJ, 30 April 2025 -
Content ArticleThe most recent Labour Party manifesto made a promise: “Never again will women’s health be neglected. Labour will prioritise women’s health as we reform the NHS”. This report takes that promise as a backdrop to an examination of inequalities in women’s sexual and reproductive health. It starts with the observation that women’s reproductive health has historically been overlooked by policy makers, with only 2% of medical research funding spent on pregnancy, childbirth and female reproductive health. This, it says, “leaves stark evidence gaps about female-specific health”. There are also “acute variations of women’s access to local reproductive health services due to the fragmented way the system is designed and delivered”. According to the authors, these variations deepen inequalities. Problems include the following: Care pathways that are disjointed, difficult to navigate and create artificial divisions between contraception, sexual and reproductive health. A lack of ethnicity reporting, leading to disparities in care and outcomes. Cuts to Public Health Grant funding, with real terms spending on contraception falling by 29% between 2015/16 and 2022/23, and with big reductions in the availability of specialist sexual and reproductive health clinics. These cuts “tend to be greater in more deprived areas, which compounds and entrenches existing health inequalities”. There are further recommendations, at both the national and the local and regional levels. The report’s authors are clear that 'sexual and reproductive health forms a central part of women’s health', and call on the government to deliver on its manifesto promise.
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Content ArticleAdolescent pregnancy is a worldwide phenomenon, albeit with variations between and within countries. It continues to have serious and lasting consequences. There is an imbalance between efforts to prevent adolescent pregnancy and efforts to respond to the needs of pregnant and parenting girls and their families. Although normative documents, policies and programmes are more likely to be based on sound data and evidence than in the past, this is still a work in progress. In the 13 years since the publication of the 2011 guideline, more research evidence and programmatic experience have been generated. The field has transitioned from a focus on addressing the needs of all adolescents, to addressing the needs of groups of adolescents depending on their particular needs and circumstances. Based on these developments, stakeholders within and outside the United Nations expressed in a variety of fora that the guideline served a useful purpose and called for it to be updated
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Content ArticleReproductive health is central to overall health and wellbeing. A multitude of conditions and experiences can impact a person's reproductive health, and needs and priorities change according to age and life-stage. The Reproductive Health Survey for England 2023 surveyed nearly 60,000 women across England in 2023. This study looks at its results, seeking to quantify the burden of poor reproductive health in England by age, ethnicity, and financial security.
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News Article
New Jersey will stockpile abortion pills, governor says before Trump inauguration
Patient-Safety-Learning posted a news article in News
New Jersey will begin stockpiling supplies of a key abortion drug, Governor Phil Murphy announced, days before President-elect Donald Trump returns to office with Republican majorities in the House and Senate. “A couple of years ago, New Jersey worked proactively to protect abortion rights,” Murphy said during his State of the State address on Tuesday, in reference to a law he signed months before the Supreme Court overturned Roe v. Wade in 2022. “And now we must further secure our reputation as a safe haven for reproductive freedom.” In addition to urging the Democratic-held state legislature to pass a law to “scrap out-of-pocket costs for abortion procedures,” Murphy announced that New Jersey will stockpile abortion medication mifepristone “so every woman can access this crucial form of reproductive care.” The decision, he said, was prompted by “anti-choice policies supported by the current majorities in Congress.” In November, reproductive-health organizations and companies reported that more women were seeking abortion pills in the aftermath of Trump’s election victory, while antiabortion advocates began planning aggressive legal action against people and organizations that help women get abortions, as The Washington Post reported. As states moved to restrict people’s access to abortion and abortion pills in the wake of Roe’s fall, New Jersey’s abortion protections have ensured that both remain legal there. In 2023, Democratic governors in other states—including California and Massachusetts—also announced plans to stockpile abortion pills. Eighteen US states now have bans on all or most abortions, three have bans on abortions after 12 or 15 weeks, while courts in two others have blocked similar laws—although thousands of women in states with restrictions are turning to online providers to access abortion pills. Read full story (paywalled) Source: Washington Post, 16 January 2025 -
Content ArticleWomen’s reproductive health conditions, such as endometriosis, adenomyosis and heavy menstrual bleeding are highly prevalent in the UK. This report looks at the experiences of care women with reproductive conditions get in England. It states that many women find their symptoms dismissed and normalised by those they turn to for help. For some conditions, it highlights that accessing diagnosis and treatment can take years, leaving patients to endure pain that interferes with every aspect of their daily lives, while their conditions worsen. Key issues highlighted in this report include: Pervasive stigma associated with gynaecological and urogynaecological health, a lack of education and “medical misogyny” has contributed to poor awareness of these conditions. Diagnosis is slow not only because reproductive health conditions often have non-specific symptoms, but because of a lack of expertise and resource. Women continue to undergo harrowing experiences of painful procedures such as hysteroscopy and having a contraceptive coil fitted. This includes not being informed of the potential pain, feeling they cannot stop procedures and not having access to sufficient pain relief. This is against medical best practice and guidelines. Women’s health hubs are being established across integrated care boards as part of the previous Government’s Women’s Health Strategy for England. The model has the potential to be a positive step towards providing the joined-up care and commissioning needed to support women with reproductive health conditions but it requires funding to do so effectively. Research into women’s reproductive health conditions lags behind other, similarly prevalent conditions. It is not adequately prioritised by funders or commissioners and is not incentivised enough in clinical academia. Although there are patches of progress since the Women’s Health Strategy for England published in 2022, it has been too slow. The strategy lacks an implementation plan and resource, yet studies show that increases in funding for gynaecology services for early diagnosis and treatment provide a significant return on investment, reduces the burden on primary and secondary care settings and helps reduce sick leave and unemployment. The report makes a wide range of recommendations relating to the following areas: Public understanding of reproductive health conditions. Accessing diagnosis. Accessing treatment and support. Training and standards. Research into women’s reproductive health conditions. In relation to the Women’s Health Strategy for England, it recommends that: This should be updated to include priorities for specific, common conditions. The Government commits to reducing waiting times for an endometriosis diagnosis to less than two years by the end of this Parliament and to improved understanding, diagnosis and treatment of heavy menstrual bleeding over the same period. The Government should allocate increased, ringfenced funding to support research into the causes, diagnosis and treatment of women’s reproductive health conditions. While increased funding will in itself attract more researchers to this area, NHS England and research bodies should also consider what steps they can take to increase interest among clinical academia. The Government should publish an implementation plan for the Women’s Health Strategy for England detailing timelines, costs and resource. Related reading Failures of informed consent and the impact on women’s health: a Patient Safety Learning blog Hysteroscopy: 6 calls for action to prevent avoidable harm Medicines, research and female hormones: a dangerous knowledge gap One hour with a women's health expert and finally I felt seen The normalisation of women’s pain Sex bias in pain management decisions Misogyny is a safety issue: a blog by Saira Sundar Dangerous exclusions: The risk to patient safety of sex and gender bias Unconscious bias: gynaecological pain, the elephant in the womb! Pain bias: The health inequality rarely discussed
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Content ArticleDoctors are taught from medical school about the benefits of IUDs, and often encourage patients that they are a good contraceptive option. However, recent media attention on the pain that some women suffer when having their IUDs fitted has started conversations about the need for cervical blocks and more honest counselling of women about the procedure. Rebekah Fenton, adolescent medicine fellow at Lurie Children's Hospital of Chicago, joins us to talk about how she counsels her patients, and why the most important thing is to make sure women are in charge of their reproductive healthcare decisions.
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Content Article
In this interview we talk to Trainee Clinical Psychologist, Sabrina Pilav, about her latest research project exploring negative experiences of coil/ intrauterine device (IUD) procedures. Sabrina explains how their in-depth qualitative methodology could contribute to improvements in the future and shares details of how people can participate.- Posted
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Content ArticleIn this article, inews columnist Kate Lister looks at the andropause, sometimes called the 'male menopause' that can affect men in their later 40s and early 50s. A gradual decline in testosterone levels can contribute to some men developing depression, loss of sex drive, erectile dysfunction and other physical and emotional symptoms. She looks at current research and views around the issue, highlighting her own bias in initially dismissing the idea and linking this to the societal notion that 'only women are hormonal'. She highlights that although the drop in testosterone men experience is not like the sudden hormonal changes that causes the menopause, men can still experience severe symptoms that require treatment with hormone therapy. "Despite my scoffing at the idea, it turns out that the andropause is very much a real thing that can impact some men very badly. The treatment is exactly the same as it is for women struggling with menopause and perimenopause. It’s hormone replacement therapy: this time in the form of testosterone."
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Content ArticleSexual dysfunction is a common side effect of Serotonergic antidepressants (SA) treatment, and persists in some patients despite drug discontinuation, a condition termed post-SSRI sexual dysfunction (PSSD). The risk for PSSD is unknown but is thought to be rare and difficult to assess. This study, published in the Annals of general psychiatry, aims to estimate the risk of erectile dysfunction (ED) and PSSD in males treated with SAs.
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Content ArticleA set of enduring conditions have been reported in the literature involving persistent sexual dysfunction after discontinuation of serotonin reuptake inhibiting antidepressants, 5 alpha-reductase inhibitors and isotretinoin. The objective of this study, published by the International Journal of Safety and Risk in Medicine, was to develop diagnostic criteria for post-SSRI sexual dysfunction (PSSD), persistent genital arousal disorder (PGAD) following serotonin reuptake inhibitors, post-finasteride syndrome (PFS) and post-retinoid sexual dysfunction (PRSD).
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Content Article
This opinion piece is by Luke* who suffers from post-SSRI sexual dysfunction (PSSD) after he was prescribed a selective serotonin reuptake inhibitor (SSRI) antidepressant. Luke introduces the condition, drawing on the experiences that others have shared through PSSD communities, to highlight the devastating impact on patients. He calls for widespread recognition, improved risk communication and better support for sufferers. *Name has been changed 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 [email protected] to tell us more.- Posted
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Content Article
PSSD International (Post-SSRI/SNRI Sexual Dysfunction)
Patient_Safety_Learning posted an article in Medication
PSSD International are an international alliance of people experiencing an iatrogenic (meaning caused by a medication or medical treatment) disorder known commonly as Post-SSRI Sexual Dysfunction or Post SSRI/SNRI Sexual Dysfunction. This potentially permanent disorder arises during or after the use of SSRI (selective serotonin re-uptake inhibitor) and SNRI (Serotonin-norepinephrine re-uptake inhibitor) antidepressants. Though characterized by a reduction or removal of sexual functioning, common symptoms also include emotional blunting, cognitive dysfunction, genital numbness and sleep disruption. The causes of PSSD are poorly understood and there are no known reliable treatments. The disorder can arise from brief exposure to SSRIs or SNRIs and can persist for months, years or indefinitely. This page exists to bring together people suffering from this condition and advocate for recognition, research and greater transparency within psychiatry concerning the risks of antidepressants. -
News ArticleSexual health services in England are at breaking point, according to local councils who are responsible for running the clinics. They say that soaring rates of infections are threatening to overwhelm services and the government needs to provide extra funding. Since 2017, more than two-thirds of council areas saw infection climb. The Department of Health said more than £3.5bn has been allocated to local public health services this year. The Local Government Association (LGA) - representing the councils that provide sexual health clinics - is warning that demand is soaring and services are struggling to keep up. It is calling on the government to provide extra funding, as well as to publish a long-term plan to help prevent and treat sexually transmitted infections. Nearly three-quarters of councils have seen a rise in rates of syphilis cases, and chlamydia infections are up in more than a third of areas. Many of the new cases are younger people, and involve gay, bisexual and other men who have sex with men, but rates have also increased in heterosexual people. Experts believe there has been a rebound effect after the restrictions connected to Covid, but infections were rising well before the pandemic hit. There has also been a greater effort to test more people and improve access to services which may have led to more cases being identified. Read full story Source: BBC News, 20 January 2024
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News ArticleThe coronavirus pandemic has made a "difficult situation even worse" for women trying to access contraception, a group of MPs and peers has warned. Their inquiry claims years of cuts means patients "have to navigate a complex system just to receive basic healthcare". It warns damage caused by the pandemic could see a rise in unplanned pregnancies and abortions. Sexual health doctors say the service is "overstretched and underfunded". The All Party Parliamentary Group (APPG) on Sexual and Reproductive Health says cuts to public health funding in England have had a wide-ranging impact, including: service closures reduced opening hours waiting lists staff cuts. The impact of these cuts is often felt by the most marginalised groups. The MPs' group is calling for a single commissioning body to improve accountability. Women are said to be "bounced from service to service" - like Louise, 32, who struggled for years to find a contraception which didn't cause adverse effects. In some cases during lockdown, even essential care provision like emergency fittings and removals of devices have been affected. Lisa's coil fitting in March was cancelled because of the pandemic. She is now pregnant. The inquiry says the underfunding of long-acting reversible contraceptives (LARCs) - intrauterine contraception and implants - means GPs are not incentivised to provide these services, which has contributed to a "postcode lottery" when it comes to services. Read full story Source: BBC News, 11 September 2020
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Content ArticleDo you see female patients? Do they have painful periods? Pain pre or post their periods? Painful sex? Do they suffer chronic pain, which may be intermittent or constant? Do they have pain when passing urine or with bowel movements? Is it painful to place a speculum for a smear test? Have you considered endometriosis? The Royal College of Nursing has provided a factsheet for nurses with guidance on how to recognise symptoms, setting out pathways of care and signposts to useful online resources.
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Content ArticleA network of endometriosis experts from 16 Italian academic departments and teaching hospitals distributed all over the country made a critical appraisal of the available evidence and definition of 10 suggestions regarding measures to be de-implemented. Strong suggestions were made only when high-quality evidence was available. The aim was to select 10 low-value medical interventions, characterized by an unfavorable balance between potential benefits, potential harms, and costs, which should be discouraged in women with endometriosis. The following suggestions were agreed by all experts: Do not suggest laparoscopy to detect and treat superficial peritoneal endometriosis in infertile women without pelvic pain symptom. Do not recommend controlled ovarian stimulation and IUI in infertile women with endometriosis at any stage. Do not remove small ovarian endometriomas (diameter <4 cm) with the sole objective of improving the likelihood of conception in infertile patients scheduled for IVF. Do not remove uncomplicated deep endometriotic lesions in asymptomatic women, and also in symptomatic women not seeking conception when medical treatment is effective and well tolerated. Do not systematically request second-level diagnostic investigations in women with known or suspected non-subocclusive colorectal endometriosis or with symptoms responding to medical treatment. Do not recommend repeated follow-up serum CA-125 (or other currently available biomarkers) measurements in women successfully using medical treatments for uncomplicated endometriosis in the absence of suspicious ovarian cysts. Do not leave women undergoing surgery for ovarian endometriomas and not seeking immediate conception without post-operative long-term treatment with estrogen–progestins or progestins Do not perform laparoscopy in adolescent women (<20 years) with moderate–severe dysmenorrhea and clinically suspected early endometriosis without prior attempting to relieve symptoms with estrogen–progestins or progestins. Do not prescribe drugs that cannot be used for prolonged periods of time because of safety or cost issues as first-line medical treatment, unless estrogen–progestins or progestins have been proven ineffective, not tolerated, or contraindicated. Do not use robotic-assisted laparoscopic surgery for endometriosis outside research settings.
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Content Article
Caitlin Moran: ‘Coil fitting left me traumatised’
Patient-Safety-Learning posted an article in Women's health
BBC Radio 5 live - In Short: Speaking to Naga Munchetty, Caitlin Moran describes her experience of having an IUD fitted that left her with long-lasting mental and physical complications. -
Content ArticleThis study, published in the Journal of family planning and reproductive health care, aimed to determine the prevalence of and reasons for and against the use of local anaesthesia (LA) for IUD insertion. The results suggest that more UK health professionals need to routinely discuss pain relief and offer this to their patients prior to IUD insertion as part of the care pathway for patients who choose to use intrauterine contraception.
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Content ArticleThere have been many testimonials from patients who have experienced high levels of pain during intrauterine device (IUD) insertion. This has gained media attention and led to calls for better pain management options and informed consent processes. This study, published in Contraception, investigated if providers accurately assess pain during IUD insertion. Authors concluded that providers underestimate pain during IUD insertion.
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Content Article
Lucy Cohen recently had a contraceptive device (IUD) fitted, during which she suffered extremely high levels of pain. Following her experience, she decided to launch a survey to understand how others had found the procedure. In this interview, Lucy shares her findings and calls for better pain management and improved consent processes, in order to reduce avoidable harm. 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 [email protected] 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? -
Content ArticleWhile COVID-19 has worsened patient waiting times across the NHS, patients with pelvic disorders have long been an under-served population experiencing unacceptable delays in care. Pelvic floor disorders are varied and can be complex, but treatment is available. However, patients, particularly those requiring surgery, can wait years from presentation before receiving the treatment they need. The report from the Pelvic Floor Society proposes changes in six key areas: Empowering and educating patients and beyond. Making use of technology. Integrating expertise. Looking again at surgical procedures. Making the most of our teams. Considering collaborations. Each area is addressed with its own chapter in the report.
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More and more women are coming forward to share their stories of a painful IUD procedure. In this blog for the BMJ Opinion, Stephanie O’Donohue (Content and Engagement Manager for Patient Safety Learning) argues that healthcare services need to get better at recording these experiences. The ripples of trauma caused by severe pain during IUD procedures If you have had an IUD fitted and would like to share your experience, please visit our community forum and share your views. Related reading The pain of my IUD fitting was horrific…and I’m not alone The normalisation of women’s pain Through the hysteroscope: Reflections of a gynaecologist Improving hysteroscopy safety (Patient Safety Learning, November 2020) -
Content ArticleThe All Party Parliamentary Group on Sexual and Reproductive Health (APPG SRH) opened the Inquiry into Access to Contraception in 2019, in response to reports of women being unable to access contraception in a way that meets their needs. The Inquiry's report, Women's Lives, Women's Rights: Strengthening Access to Contraception Beyond the Pandemic has now been published and looks specifically at the following key areas: Fragmented commissioning Funding Workforce Data collection Education and information Access for marginalised groups Opportunities to improve contraceptive provision. Women's Lives, Women's Rights: Strengthening Access to Contraception Beyond the Pandemic also sets out detailed recommendations under the following sections: Funding Commissioning structures and accountability Workforce and training Data and monitoring Improving access to contraception Information and education Education settings. The full report and the executive summary can be accessed via the link below, or the attached documents.
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