[Content Warning: Self-harm methods and injury, mention of child abuse, sexual assault, medical trauma, transphobia]
Acknowledgement
Many of you who took part in this study used the open comments section to thank me for undertaking this work, sharing that seeing this subject discussed had made you feel less alone. I, in turn, would like to thank each and every person who took part in this study, and say that you all, individually and collectively, broke through the silence I have been living in for many years. Thank you for your bravery. Thank you for your honesty. Thank you for your solidarity.
I would also like to thank Jee for so courageously starting this conversation, Lou for the helpful chats, and everyone online who kindly shared the questionnaire.
Summary
Genital and breast self-harm are under-researched, under-reported, and highly stigmatised forms of self-harm. Very little can be gained from the historical literature, as most published research on the topic is outdated and heavily based on inaccurate and prejudiced assumptions regarding patient motivation and state of mind. Few suggestions are given for how healthcare professionals can best support people who self-harm in this manner, and no suggestions are made to help people support themselves. There is seemingly no survivor-led research on the topic of genital and breast self-harm, and little available information online regarding people’s lived experience of this subject.
For this study, an online questionnaire was shared on social media in August 2022, seeking adults with direct experience of genital and/or breast self-harm. The study explores people’s experiences of disclosing and seeking treatment for genital/breast self-harm; people’s reasons for not disclosing or seeking treatment; and the reasons, functions, and motives behind genital and breast self-harm. Respondents shared thoughts regarding what they would like others to know, and offered recommendations for organisations and healthcare professionals.
Introduction
Self-harm, also known as self-injury and non-suicidal self-injury, is described by the National Institute for Health and Care Excellence (NICE) as “intentional self-poisoning or injury irrespective of the apparent purpose of the act” [1]. Self-harm is widely understood as an action lacking suicidal intent [2], although it is a key risk factor for suicide [3]. Rates of self-harm have increased in recent years, particularly in girls and young women [4]. It currently has an estimated prevalence of 13-17% in community populations and 50-60% in clinical populations[5].
Self-harm, such as cutting, scratching, burning, hair pulling, hitting etc, can be directed at any area of the body, with the forearms, upper arm, thighs, and abdomen most commonly reported [6]. A study of 440 young people who reported self-harming found that those who harmed areas of their body other than their arms were more likely to have a wider range of emotional and dissociative symptoms, and increased suicidal ideation [7]. Despite this, little consideration has been given to the location of a person’s self-harm [8], or consideration of intimate areas, such as genitals and breasts.
Self-harm of the genitals and breasts are under-reported, under-researched and heavily stigmatised forms of self-harm. While both genital and breast self-harm are described in academic literature as extremely rare [9-14], (a recent paper even going as far as calling it “the rarest behaviour in the world” [15]), some clinicians and researchers have commented that there is likely just a lack of recognition of how prevalent these forms of self-harm are [16-18]. The secretive nature of genital and breast self-harm, and the infrequent and inconsistent recording of cases in academic literature, have led some to consider it “mysterious” or even entirely incomprehensible [19-22]. The lack of literature is particularly noticeable for people assigned female at birth. Several reasons have been suggested for this, including the prioritisation of more “dramatic” injuries in published cases, such as penis and/or testicle removal, coupled with the likelihood that unless immediate medical treatment is required, many people hide their injuries and do not volunteer information or seek support [23-25]. A small number of studies which asked participants about the location of their self-harm report the prevalence of genital self-harm as ranging from 1.4% - 8% and breast self-harm from 2.7% - 18% [26,27]. A 1998 study of 62 patients with a diagnosis of dissociative identity disorder (DID) reported that at least 43% of the 54 participants “had lacerated, burnt or otherwise injured their genitals and/or breasts” [28].
It is difficult to gain much true insight into the needs of individuals who have experience of genital and/or breast self-harm, or a deeper understanding of the motivations underlying it, from the majority of published academic accounts. The available literature consists largely of outdated individual case studies, or small examinations of a series of case studies, in which the patients’ motives, feelings and state of mind are inferred by the clinician and subsequently analysed without the patients’ input. The opinions of clinical authors appear greatly influenced by the intense prejudice and stigma surrounding the subject of self-harm, and their often entirely undisguised disgust and contempt for their patients. Misogyny, homophobia, transphobia, and ableism are extremely prevalent in the historical literature, and despite a high number of cases including trans and gender non-conforming people, papers are frequently split into “male” and “female” case studies, ignoring gender identity. For people assigned male at birth, some of the most common reasons suggested for genital and/or breast self-harm in historical literature include psychosis and gender dysphoria [29-33]. For people assigned female at birth, some of the most common reasons suggested for genital and/or breast self-harm in historical literature include “hysteria”, personality disorder, and the seeking of “unnecessary” medical attention, such as wanting a hysterectomy, an abortion, or medication [34-40]. There is a strong correlation between the severity of injury and psychiatric diagnosis. The most severe injuries frequently elicited such strong emotional responses in clinicians, patients are reported as being automatically diagnosed with psychotic disorders, such as schizophrenia, without even necessarily meeting diagnostic criteria [41]. One extensive case report concluded somehow, that despite no psychosis evident during the mental state exam of a trans woman who carefully surgically removed her genitalia, she was “a nonpsychotic but basically schizophrenic individual” [42]. Where patients present with less severe physical injuries, literature indicates they are more likely to be diagnosed with a personality disorder, or considered to have some form of character defect or behavioural problem [43-45]. This is best characterised by the proposal of a (quite frankly, disgusting) disorder in the 1970s, named “Caenis Syndrome” after the Greek mythological hero Caeneus, who was abducted and raped by the God Poseidon and subsequently demanded she be transformed into a man. The syndrome is described as a triad of symptoms in women, including an atypical eating disorder, genital self-harm, and a “hysterical personality” [46,47]. While a number of case studies mention clear histories of physical, sexual, and emotional abuse, including those considered to be indicative of “Caenis Syndrome”, this is frequently discounted as being causally significant to the person’s behaviour or distress [48-50].
The academic literature indicates a desperate need for contemporary survivor-led research on this topic. However, there is notable a lack of published information authored or co-authored by people with lived experience of genital and breast self-harm. There is an absence of information or discussion about genital and breast self-harm by charities and health organisations, and very little discussion of this type of self-harm in lived-experience research. I found only a few examples. Following a discussion on social media in July 2022, where the lack of available information was commented on, I decided to conduct a small study, seeking to explore the experiences of survivors. This project is very personal to me, as I have lived experience of both genital and breast self-harm, but rarely, if ever, speak of it. Many of the people who took part stated that they had never seen anyone ever discuss the topic before, and their questionnaire responses were the first time they had ever spoken about it.
Along with attempting to encourage further research, and offer suggestions to healthcare services and professionals, one of the aims of this study was to provide survivors with a voice, enabling people to speak openly about something many of us have kept secret for a long time. The shame which often accompanies such a stigmatised form of self-harm can act like a barrier between us, holding us apart, maintaining our silence and solitude. I hope that survivors can take away a small thread of hope and connection from this study, knowing that none of us are truly alone in this.
Data collection
An online questionnaire was shared on Twitter and Instagram between 01/08/22 - 21/08/22. To take part, the respondents needed to be aged 18+ and have direct experience of genital and/or breast self-harm, or have thought about or had urges to self-harm in this way. The questionnaire included a mixture of open and closed questions, and collected anonymous responses from 137 people. 32 submissions were incomplete in all but the consent page and as such were discounted. This left 105 valid responses.
Findings and Discussion
The majority of the respondents were cis gendered women (62%), followed by non-binary people (11%), trans men (7%) and genderqueer people (7%). Interestingly, in contrast to the historical research on genital and breast self-harm (which indicates higher levels in cis men and trans women) cis men and trans women were the smallest groups in this study, at 3% and 1% respectively.
Other than gender identity I did not seek out any further information regarding the demographics of the respondents. This was deliberate, as the topic of genital and breast self-harm is very sensitive and currently unexplored in survivor communities. I felt in this first ever study, it was more important to centre people’s feelings of safety and anonymity.
The largest group of respondents had experience of breast self-harm (31%; n=33); the next largest group had experience of both genital and breast self-harm (23%; n=24); this was followed by people who had experience of genital self-harm (20%; n=21); and then people who had experienced thoughts or urges to harm either their genitals, their breasts, or both (24%; n=25). 2% of respondents (n=2) preferred not to say. Out of the respondents who had engaged in genital or breast self-harm, 79% had never sought medical care for their injuries. Of the 21% who had sought medical care, 71% had attended A&E (n=12), 53% had been to their GP (n=9), and 18% had seen a gynaecologist (n=3). No respondents had sought medical help from other services, such as sexual health clinics or urologists, although some commented that they had discussed medical aspects with NHS mental health professionals and private therapists.
Respondents were asked what the response was like from healthcare professionals if they had ever disclosed their genital and/or breast self-harm. The majority of people (67%; n=70) stated that they had never disclosed it. Out of the 32% (n=34) of people who had disclosed, 56% stated that it was a negative experience; 18% stated it was neither positive nor negative; and 26% stated it was positive. 85% of people who reported disclosing (n=29), left comments regarding responses they had received from staff, including both positive and negative experiences, and feelings about disclosure. Many people reported that mental health staff were unwilling to acknowledge or discuss the topic of genital and breast self-harm, which included staff changing the subject, ignoring disclosures, not exploring it, refusing to continue conversation, appearing visibly embarrassed, and using euphemisms when describing it. It was reported that staff frequently made assumptions about the reasons for the self-harm, including insisting it was related to trauma or to gender dysphoria when it wasn’t. In contrast, medical staff often responded by demanding to see the injuries; declaring the person as lacking capacity so staff could force an exam and medical treatment; and even insisting on invasive exams in people with a history of genital/breast self-harm who were seeking medical attention for a different problem. This included non-consensual pelvic and breast exams. Medical staff in A&E were reported to have behaved cruelly; mocking, laughing at, insulting, and degrading people who presented with genital/breast self-harm. People described experiencing being sexually harassed and sexually assaulted, including having their clothes removed without any medical need and being touched and examined inappropriately or without consent. Numerous comments were made regarding staff informing the person they had “ruined” or “defaced” themselves as a woman, and would never attract a man.
In terms of positive behaviour, some staff listened and responded with compassion and understanding, gave people space to share their feelings, and didn’t judge. One respondent described a time when a mental health professional accompanied them to seek medical care, as they felt unable to do it alone and unable to speak/describe what happened. Giving people control over their treatment and their words was felt to be important, and made people feel safe. Offering people something as simple as a hug, a quiet place to sit, and a drink was described as meaningful. Respondents indicated they felt a great deal of fear about seeking help, due to potentially devastating responses from professionals. People described feeling fear of losing control over their bodies; fear of being diagnosed with a personality disorder; fear of being touched and looked at; fear of it being documented in their medical notes; and fear of treatment replicating previous abuse.
The questionnaire asked people what had stopped them from disclosing their genital and/or breast self-harm (including thoughts/urges) to professionals, either now or in the past. The biggest reason was shame (64%; n=67). Respondents commented that the shame they felt was related to many factors, including having self-harmed; having self-harmed in an intimate/sexual place; the relationship between the self-harm and their past trauma; and their difficult feelings of low self-worth, self-loathing, disgust, and self-hatred. Shame was felt to be compounded by professionals responding with shock, embarrassment, fear, and alarm. 61% of respondents (n=64) indicated that they were frightened of being treated badly, judged, or experiencing a negative staff response. 47% (n=49) felt that mental health services and professionals were not trustworthy. Other reasons to not disclose to professionals included, fear of staff making assumptions about motivation (44%; n=46); not having the words to describe the experience (33%; n=35); and not wanting staff to share private information with others without consent (41%; n=43).
Almost 20% of respondents (n=20) indicated their reasons for not disclosing genital and/or breast self-harm were not listed, and so shared them in the “other” comments section. 40% of people who shared a reason in the comments section stated that they did not disclose to healthcare professionals due to the fear that this could lead to being sectioned or forced to have treatment or a physical examination. 25% of people described how disclosure felt too frightening as it placed them in an exceptionally vulnerable position. Further reasons included, fear of having one’s gender identity questioned (20%); the intrusive and violating nature of having genital/breast self-harm recorded in medical notes where unknown staff could access it at any time (15%); the feeling that such a disclosure would provide staff with more ammunition to ask intrusive questions about trans patients’ anatomy (10%); and the fear of being judged an unfit parent (5%).
103 out of 105 respondents (98%) provided reasons, motives, and functions for their genital/breast self-harm (including thoughts and urges of such). 85% of respondents reported that this type of self-harm served more than one purpose, with an average of 4 reasons/functions per person (ranging from 1-11). The most commonly reported reason (61%) was a response to feelings of shame and self-loathing. This linked to a number of diverse subjects, including trauma, gender dysphoria, asexuality, religion, and sexual shame. 50% of respondents stated that genital/breast self-harm was a form of self-punishment, which was related to numerous reasons, including religious punishment, punishment for experiencing sexual feelings, and punishment of body/self due to internalised blame for sexual abuse. Following that was self-harm as a response to feeling like that area of the person’s body didn’t belong to them (44%); and reducing difficult or painful emotions (40%). 25% of people reported that genital or breast self-harm was due to experiencing gender dysphoria, while 23% of respondents indicated that they self-harmed in this way in response to physical feelings and sensations in those areas. The types of feelings were expanded upon in the comments section to include pain and other distressing sensations related to traumatic flashbacks; the presence of hair or hair regrowth following removal; physical sensations from ovulation and menstruation; spontaneous sexual arousal; and the physical desire to masturbate. In contrast to the historical research, which centred psychosis and “attention-seeking” as two of the most common reasons for genital and breast self-harm, the least commonly reported reasons were psychosis (8%), and the use of genital and/or breast self-harm as a means of communicating distress to other people (3%).
More than 30% of respondents (n=32) indicated their reasons/motives/functions for genital and breast self-harm were not listed, and so shared them in the “other” comments section. 31% of this group commented that complex negative feelings related to sexual abuse were the reason for their self-harm, which included hatred of their body or anger at their body for being abused; self-disgust; wanting to hurt the area of their body which represented abuse; and an attempt to undo abuse by destroying the area of their body which was abused. 28% of people indicated that self-harm of intimate areas was not as significant as people thought, but simply represented practical reasons, which included, choosing the areas because they had run out of free space elsewhere on their body; choosing a place where it was easy to hide the injuries, including under swimwear and sports clothes; self-harming the breasts because it was not felt to be a medically dangerous area; and choosing the area because the person already felt detached from it for other reasons. 16% of people described how genital and/or breast self-harm was directly related to body-shaming. This included being bullied at school; gender-based shaming from family; fatphobia and body-shaming within the media; and porn culture which pushes a narrative of what breasts and genitals “should” look like.
The questionnaire described how academic research and medical case studies which discuss genital and breast self-harm frequently leave out trauma as a reason some people self-harm in this way. Respondents were asked if they believed their experiences of genital and/or breast self-harm (including thoughts and urges) were related to trauma. 77% of respondents (n=81) replied that they believed their genital/breast self-harm was related to trauma, including childhood abuse and sexual violence, while 22% replied that their self-harm was not related to trauma (n=23). One person preferred not to say either way.
At the end of the questionnaire was an open comments section, asking respondents if there was anything they would like people to know about genital and breast self-harm, or anything else they would like to share. 81 comments were left, which are discussed below, including some direct quotes.
Very little is written or publicly shared about genital and breast self-harm. What would you like people to know?
“It is a quiet type of private violence. Of all the ways I have self harmed, this type has felt the most intimate and personal. The truest manifestation of all my blazing hurts.”
“That it's an intensely private and involuntary act and I might not be able to tell you why I do it or what it means to a degree that you will understand. That doesn't mean that I haven't thought about it or tried to stop. If I could disclose it with some control over how you record it, I might be able to indicate when it has happened and that might be a clue that something difficult is happening in my life.”
“It’s a valid trauma response and is rarely shared because of the shame of both the areas of the self harm and the shame from the trauma. Also it can link in with gender and hating those parts of the body. It’s not attention seeking and often the shame stops us from seeking help.”
“These are the types of thoughts gender dysphoria causes. We're not wanting to be rid of certain body parts because we think it'll be more fun or that we'll be more attractive or trying to get into the bathrooms designated for the other gender or some imaginary "fad". We're experiencing intense distress that causes us to harm ourselves in ways that may very well kill us, intentionally or unintentionally, just to find relief.”
“That it doesn't just occur in people who are trans or have experienced CSA but also that it might be due to sex repulsion in asexuality [..] or a compulsion due to OCD. Huge unique and diverse number of reasons, & [people should] never assume why.”
“My self harm is not for attention. If someone tells you they're in this position (of self harming; these areas or otherwise,) then be kind and compassionate and try to understand their feelings. We're in enough pain already.”
“That not hearing this talked about it makes me feel lonely and ashamed.”
“I would like people to know that self-harm can be a way to resist harm that's done to you: to let your body speak for you when you've been silenced, or reclaim your right to control it when that's been taken away.”
“Sharing that I have done this to myself is the most vulnerable and ashamed I have ever been. I couldn’t say it outloud. All my words disappeared. No-one talks about it so it feels like I am the only person who does this, which makes it so much worse. I feel like such a disgusting person.”
“I don’t speak of it. I don’t even really see other trans people speak of it so it makes me feel kind of gross and awful, like I can’t even be trans correctly. I feel like I should love my body more especially post-testosterone but I just feel like it’s still wrong.”
“That what was done to me doesn’t come close to what I do to myself. My body is separate to me as I hate what it allowed and I see no other way of learning to tolerate it other than punish it. People can’t begin to imagine the level of distress to make me feel I have to do it. I’m deeply ashamed and stigma means it’s something I carry alone.”
“[It's] not something I would want to tell any mental health professional because they share what I say between them without my consent. Anything you share with a mental health professional is 'fair game' to be talked to whoever they want to in the NHS. If it goes on your records anyone you ever speak to in the future can read it and judge you.”
“It is something that just isn't talked about in mental health services or communities, and when it is touched on there is always the suggestion of deviance and disgust around it that just adds to the stigma.”
“To suffer abuse is devastating enough to then be further traumatised by the very people who you seek help from causes a depth of harm that [mental health] services are often reluctant to acknowledge, it needs to change.”
“I had no idea that there were other people who experience this. I have felt like a freak and so alone. It has felt so extreme and scary. It has been re-traumatising accessing medical treatment for this type of self harm. Especially when it comes to applying pressure to the wounds. It feels like I can breathe a bit easier knowing I’m not alone though. Someone is taking the time to research this. People are getting involved because they have experience. I’m not alone. I’m not a freak.”
The comments left by people were brave, insightful, honest and devastating. The most common statement was that genital and breast self-harm was an intensely private act, and characterising it as attention-seeking was wrong. More so than in any study or subject I have read about, individuals made it clear that medical notes were a threat to patient safety. It was explained repeatedly that the inclusion of genital/breast self-harm in mental or physical healthcare notes, without explicit patient consent, took power and control away from the individual, and left them feeling exposed, frightened, and violated by the ability of unknown staff to access those notes at any point. For people who had never disclosed genital or breast self-harm, this was a significant barrier to doing so. For people who had previously disclosed or sought medical attention for their injuries, the fact it was already in their notes discouraged further interaction with healthcare services. It was suggested that if genital/breast self-harm was disclosed, patients should have the choice over whether it was documented in their notes, and what level of detail was included.
There was an extraordinary generosity in the comments, from people desperate to get across the reasons for this type of self-harm, and to ensure people understood how complex it was. Despite many people commenting that they did not know anyone else who had self-harmed in this way, and that they had never shared their experience with anyone before, people strongly emphasised that their personal experience was not universal. It was repeated that genital and breast self-harm were extremely complex and unique to each individual, and because of that it was very important that professionals, and others encountering it, not make assumptions or judgements on the underlying reasons. Some people explained that even they weren’t entirely sure why they did this, and having a non-judgmental person to explore the topic would be helpful. It was frequently commented that more information and education needed to be available on this topic. This included training for healthcare professionals, and also information for people with this experience, and their families and friends. Genital and breast self-harm were felt to be unacceptable topics in mental health, trauma survivor, and LGBTQ+ communities, leaving people nowhere to turn. While education in health services was highlighted as extremely important, education in these communities was seemingly felt to be just as, if not more important.
Examining themes within the responses frequently revealed similar thoughts and feelings lying beneath a whole range of different subjects. One of the strongest themes was the experience of shame, which was often linked to sex or sexual topics. The internal experience of sexual shame most frequently related to sexual abuse; sexuality and gender; religion and sex; and the sexual development of the body. When considering shame externally, respondents described attempting to place distance between genital/breast self-harm and anything that suggested sexual enjoyment. This included multiple specific comments explicitly stating that this type of self-harm was distinct from self-inflicted injuries related to kink or BDSM. Respondents described concerns that if they disclosed their previous or ongoing experiences of genital/breast self-harm, people might believe it had been carried out for sexual gratification, which dramatically amplified the potential for shame. Academic literature on the topic of genital and breast self-harm does not differentiate between self-harm and injuries sustained by people engaging in kink and BDSM. The respondents indicate that there is a need to create a distinction, possibly through the use of different language, to avoid causing shame and/or distress in people who engage in genital/breast self-harm for emotional, traumatic, and mental health reasons.
It was painful to read that one of the greatest feelings amongst respondents, alongside shame, was one of isolation; living with this experience alone, having no-one to talk to, and never seeing it discussed or even mentioned anywhere. Many people reported feeling like “freaks”, “weirdos” or “outcasts”, even with regard to friends or peers who self-harmed in other ways. I felt deeply connected to these comments, moved to tears on some occasions, as the feeling of aloneness and exclusion came through viscerally, reflecting my own experiences back at me. I chose the title of this study from one of the comments left by a respondent. The words 'we are not weird “others”' didn’t leave me for days, creating this image of a person standing alone in the corner of a room, while a crowd of people moved nearby, deliberately ignoring them. Despite being able to talk about experiencing child sexual abuse, and finding support from peers for other forms of self-harm, the combination of these two subjects mixed with religion and other complex reasoning, left me in silence for 20 years. That so many others have been sat in this same silence hurts me deeply.
As a society we have so far to go in our understanding and treatment of self-harm. Research and testimony from survivors indicates that attitudes within healthcare services are still frequently negative, with many people who seek help for self-harm experiencing unpleasant responses and being subject to abusive practices [51-54]. It is a commonly held belief amongst many healthcare professionals that self-harm is synonymous with personality disorder, leaving people vulnerable to being labelled with this devastating diagnosis when disclosing or seeking treatment for any type of self-harm [55,56]. Fear of being labelled with a personality disorder diagnosis was one of the reasons given by a number of respondents for avoiding healthcare services and not disclosing genital/breast self-harm. The high rates of personality disorder linked to genital and breast self-harm in academic literature suggests this fear is not unfounded [57-59].
While breast and genital self-harm remains highly stigmatised and poorly understood, people who self-harm in this way (or have scars from previous genital and/or breast self-harm) may feel excluded from or frightened to access physical healthcare services. Examples of this in the comments included avoiding cervical screenings; not seeking sexual health support; refusing breast or genital exams; ignoring urinary problems; and not seeking maternity care. This issue was also raised for trans healthcare. Some people commented that they had never disclosed or sought help for genital or breast self-harm as they were frightened this could seriously negatively affect their ability to access gender affirming care, including hormones and surgery. It was felt surgery could be reinterpreted as a form of self-harm, and that their gender identity could be called into question. While genital and breast self-harm are related to a diverse range of complex reasons and personal situations, the results of this study indicate that this type of self-harm predominantly affects trauma survivors and people in the LGBTQ+ community. For services to truly provide trauma-informed and LGBTQ+ affirming/inclusive care, genital and breast self-harm need to be acknowledged, and appropriate care provided for those who require it; without judgement, the threat of stigmatising diagnoses, the questioning of trans identities, or responses which further traumatise.
Conclusion
Historical academic literature is almost all that is available on the topic of genital and breast self-harm, leaving survivors with no voice, and professionals wildly misinformed. 105 people took part in this study, sharing their deeply personal and often exquisitely painful experiences. It is, to my knowledge, the only survivor-led study on this topic. The testimony of the people who took part makes it clear that not only are mental and physical healthcare services failing to provide appropriate, safe, and sometimes even lawful care for people seeking help for genital and breast self-harm, but that the stigma surrounding this type of self-harm is actively blocking people from seeking healthcare in other areas. It is apparent that there is much work to be done in mental health, trauma survivor, and LGBTQ+ communities to create spaces in which people feel safe to share these experiences with peers. There is also a need for accessible educational and supportive resources for people who self-harm in this manner, and for their family and friends, so that people can learn to keep themselves safe, practice self-care, and receive supportive responses from their loved ones.
While many people shared distressing experiences of disclosure and treatment for their self-harm, some also described helpful and kind responses from professionals. Such responses need to be encouraged, so that they become the norm. More needs to be done within healthcare settings to educate professionals about genital and breast self-harm, and the best ways to respond to people presenting for help in this situation. Nobody should ever face the indignity or cruelty of being mocked or insulted when asking for help. Nobody should ever have to contend with being physically or sexually assaulted when seeking care. Nobody should ever have to decide between seeking healthcare or keeping themselves physically and psychologically safe. That this has happened and is still happening to people to this day is disgraceful, and I hope healthcare professionals reading this will carry this understanding forward into their organisations and workplaces. This type of treatment cannot be allowed to continue.
Recommendations for services and organisations:
Self-care, wound care, and harm minimisation advice for genital and breast self-harm should be made available to help people safely manage their injuries.
Organisations including educational institutes, charities, and healthcare services should include information about genital and breast self-harm when discussing/publishing/teaching about self-harm.
Charities and survivor-led organisations which support people with self-harm should specifically name genital and breast self-harm in their published material.
NICE should consult people with lived experience of genital and breast self-harm to create best practice guidelines for this type of self-harm. This should be included in their self-harm treatment guidelines.
Further survivor-led research should be undertaken to attempt to gain a deeper understanding of genital and breast self-harm, and how people can be best supported.
Recommendations for healthcare professionals:
Remain calm, non-judgemental, and unembarrassed.
Be kind. The person in front of you is likely very frightened.
Genital and/or breast self-harm do not automatically indicate a lack of decision-making capacity. Do not make this assumption.
Recognise that some people may not be able to talk or explain what has happened to them. Offer pen and paper or other methods of communication.
Create as much choice and give people as much control over treatment as possible.
Do not touch or attempt to examine someone without full informed consent.
Recognise that documenting genital/breast self-harm in medical notes can be very distressing to some people. Try and explore this with people before making notes.
Do not ask unnecessary or overly intrusive questions. Ask yourself, are you asking because you need to know or because you want to know?
Explain everything you are going to do beforehand.
Remember that consent is an ongoing process. Stop and check in repeatedly.
This is original, independent research, conducted by myself voluntarily and without any form of remuneration. I am a mental health service survivor; Mad activist; and have lived experience of genital and breast self-harm. This work is not affiliated with any health or educational organisation, charity, or governmental body. If you would like to discuss the research further, please contact me by email: wren.aves@gmail.com, or via twitter: @jaunty_aphorism.
If you quote, reference, or reproduce any part of this research, please cite appropriately. Citation suggestion: Aves W. We Are Not Weird “Others”: Lived-Experience Perspectives of Genital and Breast Self-Harm. Psychiatry is Driving Me Mad. 2023. Doi: 10.13140/RG.2.2.14763.52008
References
NICE. Self-harm: assessment, management and preventing recurrence. NICE guideline 225. 2022.
Bentley K, Nock M, Barlow D. The Four-Function Model of Nonsuicidal Self-Injury. Clinical Psychological Science. 2014;2(5):638-656.
Hawton K, Bergen H, Cooper J, Turnbull P, Waters K, Ness J et al. Suicide following self-harm: Findings from the Multicentre Study of self-harm in England, 2000–2012. Journal of Affective Disorders. 2015;175:147-151
McManus S, Gunnell D, Cooper C, Bebbington P, Howard L, Brugha T et al. Prevalence of non-suicidal self-harm and service contact in England, 2000–14: repeated cross-sectional surveys of the general population. The Lancet Psychiatry. 2019;6(7):573-581.
Stänicke L. The Punished Self, the Unknown Self, and the Harmed Self – Toward a More Nuanced Understanding of Self-Harm Among Adolescent Girls. Frontiers in Psychology. 2021;12.
Yearwood E, Bosnick E. Deliberate Self-harm: Nonsuicidal Self-injury and Suicide in Children and Adolescents. In: Yearwood E, Pearson G, Newland J, ed. by. Child and Adolescent Behavioral Health: A Resource for Advanced Practice Psychiatric and Primary Care Practitioners in Nursing. John Wiley & Sons, Inc; 2021.
Laukkanen E, Rissanen M, Tolmunen T, Kylmä J, Hintikka J. Adolescent self-cutting elsewhere than on the arms reveals more serious psychiatric symptoms. European Child & Adolescent Psychiatry. 2013;22(8):501-510.
Gardner K, Bickley H, Turnbull P, Kapur N, Taylor P, Clements C. The significance of site of cut in self-harm in young people. Journal of Affective Disorders. 2020;266:603-609.
Simpson M. Female Genital Self-Mutilation. Archives of General Psychiatry. 1973;29(6):808.
Standage K, Moore J, Cole M. Self-Mutilation of the Genitalia by a Female Schizophrenic. Canadian Psychiatric Association Journal. 1974;19(1):17-20.
Conde E, Santos T, Leite R, Vicente C, Figueiredo A. A Case of Genital Self-Mutilation in a Female—Symptom Choice and Meaning. Journal of Sex & Marital Therapy. 2016;43(6):560-566.
Nerli R, Ravish I, Amarkhed S, Manoranjan U, Prabha V, Koura A. Genital self-mutilation in nonpsychotic heterosexual males: Case report of two cases. Indian Journal of Psychiatry. 2008;50(4):285.
Padubidri J, Akshath K, Singh T, Manoj M. Male genital self-mutilation due to tomophobia – case report and review of literature. Medico-Legal Journal. 2022;90(2):109-112.
Vohra A. Genital and Nipple Self-Mutilation in a Female Schizophrenic Patient. German Journal of Psychiatry. 2010;13(2):91-93.
Arpitha B, Chaudhari S, Vinod A. Genital self mutilation: is a solution for bipolar depression? – A case report. Medica Innovatica. 2020; 9(1):21-23
Coons P. Dr. Coons replies. Psychosomatics. 1987;28(7):344-346.
Boyer E, Tucker P. Genital Self-Mutilation: A Cutting Conundrum. Psychiatric Times. 2020;37(7).
Marckmann S, Garlipp P, Krampfl K, Haltenhof H. Genital Self-mutilation and Erotomania. German Journal of Psychiatry. 2005;8:38-41.
Boyer E, Tucker P. Genital Self-Mutilation: A Cutting Conundrum. Psychiatric Times. 2020;37(7).
McAllister M. Multiple meanings of self harm: A critical review. International Journal of Mental Health Nursing. 2003;12(3):177-185.
Beilin L. Genital Self-Mutilations by Mental Patients. Journal of Urology. 1953;70(4):648-655.
Eke N. Genital self-mutilation: there is no method in this madness. BJU International. 2000;85(3):295-298
Alao A, Yolles J, Armenta W. In Reply: Genital Self-Mutilation. Psychiatric Services. 1999;50(10):1362-1363.
Alao A, Yolles J, Huslander W. Female Genital Self-Mutilation. Psychiatric Services. 1999;50(7):971-971.
Marckmann S, Garlipp P, Krampfl K, Haltenhof H. Genital Self-mutilation and Erotomania. German Journal of Psychiatry. 2005;8:38-41.
Laukkanen E, Rissanen M, Tolmunen T, Kylmä J, Hintikka J. Adolescent self-cutting elsewhere than on the arms reveals more serious psychiatric symptoms. European Child & Adolescent Psychiatry. 2013;22(8):501-510.
Favazza A, Conterio K. Female habitual self-mutilators. Acta Psychiatrica Scandinavica. 1989;79(3):283-289.
Middleton W, Butler J. Dissociative Identity Disorder: An Australian Series. Australian & New Zealand Journal of Psychiatry. 1998;32(6):794-804.
Romilly C, Isaac M. Male genital self-mutilation. British Journal of Hospital Medicine. 1996;55(7):427-431.
Nakaya M. On Background Factors of Male Genital Self-Mutilation. Psychopathology. 1996;29(4):242-248.
Nerli R, Ravish I, Amarkhed S, Manoranjan U, Prabha V, Koura A. Genital self-mutilation in nonpsychotic heterosexual males: Case report of two cases. Indian Journal of Psychiatry. 2008;50(4):285
Simopoulos E, Trinidad A. Two Cases of Male Genital Self-Mutilation: An Examination of Liaison Dynamics. Psychosomatics. 2012;53(2):178-180.
Coons P. Self-Amputation of the Breasts by a Male With Schizotypal Personality Disorder. Psychiatric Services. 1992;43(2):175-176.
Goldney R, Simpson I. Female Genital Self-Mutilation, Dysorexia and The Hysterical Personality: The Caenis Syndrome*. Canadian Psychiatric Association Journal. 1975;20(6):435-441.
Cope, TI Traumatic vaginal haemorrhage. The Medical Journal of Australia 1953; 6:816–817.
Goldfield, M. D., & Glick, I. D. (1970). Self-mutilation of the female genitalia: A case report. Diseases of the Nervous System, 31(12), 843–845.
French A, Nelson H. Genital Self-Mutilation in Women. Archives of General Psychiatry. 1972;27(5):618.
Conde E, Santos T, Leite R, Vicente C, Figueiredo A. A Case of Genital Self-Mutilation in a Female—Symptom Choice and Meaning. Journal of Sex & Marital Therapy. 2016;43(6):560-566.
Simpson M, Anstee B. Female genital self-mutilation as a cause of vaginal bleeding. Postgraduate Medical Journal. 1974;50(583):308-309.
Bransfield R. Self-mutilation. Psychosomatics. 1987;28(7):344-346.
Greilsheimer H, Groves JE. Male genital self mutilation. Arch Gen Psychiatry. 1979;36:441–6
Schneider S, Harrison S, Siegel B. Self-Castration by a Man with Cyclic Changes in Sexuality. Psychosomatic Medicine. 1965;27(1):53-70.
Mago V. Male genital self-mutilation. Indian Journal of Psychiatry. 2011;53(2):168.
Rada R, James W. Urethral Insertion of Foreign Bodies. Archives of General Psychiatry. 1982;39(4):423.
Goldney R, Simpson I. Female Genital Self-Mutilation, Dysorexia and The Hysterical Personality: The Caenis Syndrome*. Canadian Psychiatric Association Journal. 1975;20(6):435-441.
Goldney R, Simpson I. Female Genital Self-Mutilation, Dysorexia and The Hysterical Personality: The Caenis Syndrome*. Canadian Psychiatric Association Journal. 1975;20(6):435-441.
Goldfield M, Glick, I. Self-mutilation of the female genitalia: A case report. Diseases of the Nervous System. 1970; 31(12), 843–845.
Krasucki C, Kemp R, David A. A case study of female genital self-mutilation in schizophrenia. British Journal of Medical Psychology. 1995;68(2):179-186.
Standage K, Moore J, Cole M. Self-Mutilation of the Genitalia by a Female Schizophrenic. Canadian Psychiatric Association Journal. 1974;19(1):17-20.
Goldney R, Simpson I. Female Genital Self-Mutilation, Dysorexia and The Hysterical Personality: The Caenis Syndrome*. Canadian Psychiatric Association Journal. 1975;20(6):435-441.
Hadfield J, Brown D, Pembroke L, Hayward M. Analysis of Accident and Emergency Doctors' Responses to Treating People Who Self-Harm. Qualitative Health Research. 2009;19(6):755-765.
DrEm_79. Self-harm and the emergency department. BMJ. 2016;353:i1150.
Anon. Mentally unwell or criminal? My experience of being criminalised for my mental health. Recovery in the Bin. 2020. Available from: https://recoveryinthebin.org/2020/08/19/mentally-unwell-or-criminal
Rayner G, Blackburn J, Edward K, Stephenson J, Ousey, K. Emergency department nurse's attitudes towards patients who self-harm: A meta-analysis. International Journal of Mental Health Nursing. 2018;28: 40-53.
Proctor G. Disordered Boundaries? A Critique of 'Borderline Personality Disorder'. In: Spandler H, Warner S, ed. by. Beyond Fear and Control: working with young people who self-harm. Ross-on-Wye: PCCS Books; 2007. p. 105-119.
Walker T. Why Cut Up?. Asylum Magazine. 2004; 14(3): 20-22. Available from: https://asylummagazine.org/2004/09/asylum-14-3-autumn-2005/
Wise T, Dietrich A, Segall E. Female genital self-mutilation: Case reports and literature review. Journal of Sex & Marital Therapy. 1989;15(4):269-274.
Bransfield R. Self-mutilation. Psychosomatics. 1987;28(7):344-346.
Goldney R, Simpson I. Female Genital Self-Mutilation, Dysorexia and The Hysterical Personality: The Caenis Syndrome*. Canadian Psychiatric Association Journal. 1975;20(6):435-441.