PODCAST #12. Dismissed at the doctor’s office? Here’s how to self-advocate using DBT techniques (pelvic pain healthcare)
Hi there! Thanks for joining in for Episode 12, Season 1, of The Sensate Space podcast. This final episode for the season explores self-advocacy tools for when you feel unheard, stuck, or dismissed in healthcare settings, particularly in the sexual and pelvic pain space (people with vaginismus / GPPPD, endometriosis, etc - I'm looking at you). You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Hi there! Welcome! I’m glad you’re here. If you’re playing along at home, this is episode 12 - the final episode of season 1 which is pretty exciting. This season has had a pretty big focus on how women and other people with vaginismus/GPPPD/other pelvic and sexual pain conditions access healthcare. We’ve spoken about how to build a treatment team, and having more meaningful conversations with healthcare providers as part of giving our consent, or permission, to go ahead with an assessment or treatment plan. You can look back at Episodes 3, 5, and 11 in particular if you’d like to hear more. To find these links you can send me a message or email asking for the links, or go to www.thesensatespace.com/pod3 (that’s p-o-d and the numeral 3) or, /POD5 or /POD11. I’ll make sure these are linked in the show notes as well. This episode will follow the healthcare access thread a little further, with a focus on how people can advocate for themselves in medical, allied health, and general healthcare settings, when seeking help for pelvic and sexual pain conditions. As always, keep in mind while listening that this information is educational and general in nature - it’s not a replacement for your own personalised support or therapy, so make sure you reach out to relevant professionals as you need. Content warning: I’ll talk about medical settings and procedures briefly in this episode. Now, this episode was borne from disappointment in hearing from so many women and female-presenting people - internationally - that they have a hard time getting anywhere with healthcare appointments. They’re asking “how can I get my doctor to listen to me?” “why aren’t they taking my pain seriously” and “I don’t know how to get the referral, I feel like this isn’t going anywhere”. Of course - there are wonderful, respectful, professionals who are understanding and generous with their time and services. If you’re supported by someone like this I am SO glad for you. Hold on to them! A good treatment team makes a world of difference. Like all of our episodes, this is a short one, so I encourage you still to listen in because the technique we go through can be really useful for other situations too - with friendships, work issues, relationships, boundaries, etc. Unfortunately, these issues aren’t just based on random anecdotes. It’s backed up by the research. We know that women and AFAB issues relating to pain, particularly around our reproductive systems, are often dismissed. (Now a quick note - the research refers to women, generally meaning this as female presenting people, people assigned female at birth. But the literature doesn’t differentiate this well, so just keep that in mind. I apologise for any non-affirming language or findings here). Accessing medical care as a woman: So, is it harder to access medical care as a woman? According to the research papers I’ve listed in the show notes, clinical studies show that women’s pain is more of underestimated. Women are more likely to be offered psychological therapy but men are more likely to be offered analgesics/pain relief. Pain in women is more likely to be attributed to a psychological case than a physical, medical reason. We also see issues when we look at how long it takes people to get a diagnosis of a pelvic pain condition, for example recent Australian studies report that it’s an average of 6-8 years between recognising symptoms and getting a label and an understanding of what is happening. This has apparently been improving in recent years. On a less formal note, I’d encourage everyone to check out the instagram page @thingsdoctorssay - their tagline is “a space to commemorate and heal from abelist to medical malpractice”. Again, I want to acknowledge there are wonderful medical staff around. In Australia, we have such a storage of professionals - especially in the country - so there are system-level pressures at play too. Overall - there is room for growth in this space. So, what can we do about it if we’re hitting roadblocks when we try to access medical and health services? Today I will share with you a technique from DBT, or dialectical behaviour therapy, which is useful for this exact situation (and many others, actually). What is DBT: You might have heard of CBT or cognitive behavioural therapy, which is probably the most well known therapy type with the most research behind it. CBT works with how we think, behave, and feel - these three areas are all intertwined and you can essentially work on different levers (for example, responding to your thoughts in a particular way to reduce anxiety, or changing behaviour like starting to exercise to lift mood). DBT is an offshoot of CBT. DBT stands for dialectical behaviour therapy and was created by an American psychologist named Marsha Linehan, when she was working with complex and high risk populations. DBT has a focus on managing intense emotions, working with relationships, and coping with distress. It includes some principles of CBT as well as other modalities like mindfulness. So - Within DBT, there is a focus on Interpersonal effectiveness skills, which focus on tools to help with communication and relationships. This can be helpful for personal relationships, but also has a place in managing other day to day experiences like going to a doctor’s appointments. Now a caveat - DBT is not always great for neurodivergent people
PODCAST #11. What is the role of psychology in pelvic pain management? A biopsychosocial approach.
Hi there! Thanks for joining in for Episode 11, Season 1, of The Sensate Space podcast. This episode explores how psychology can help with managing pelvic and sexual pain disorders, and understanding how GPPPD/vaginismus treatment requires addressing biological (physical), psychological, and social factors. This episode is relevant for people with genito-pelvic pain/penetration disorder (GPPPD), a pelvic and sexual pain condition encompassing vaginismus and dyspareunia, and other pelvic pain conditions. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Hello! Welcome! Thanks for joining for episode 11 of the sensate space podcast, we are almost at the end of the first season - very exciting. I’m batch recording these first episodes in advance which means that I’ve dedicated this time with a big dose of hope and optimism that someone somewhere will listen in and make it all worthwhile. So, if that’s you, thank you for putting a smile on my face when I check the podcast statistics. You are valued. This episode will focus on how psychology fits within understanding and treating genito-pelvic pain penetration disorder (clunkily abbreviated to GPPPD), aka vaginismus and dyspareunia. So, to recap - GPPPD is characterised by recurrent and persistent pain associated with intercourse or similar activities (so - sex, pap smears, using tampons), increased pelvic muscle tension, anticipation of pain before these activities, and involuntary pelvic floor contraction, which patients often talk about a experiencing a barrier or a wall. If you haven’t already, have a listen to episode 2 to find out more. Now, let’s get started. Psychology: So, firstly, what do we mean when we’re talking about psychology? It’s such a broad term. The general consensus is that we’re talking about the human mind, and how it influences a person and their behaviour. To dive a little deeper - we’re looking at the biological, emotional, personal, social, and cognitive (aka thinking) processes that underlie our human experience. For example, we think about learning, motivation, relationships, and decision-making. More recently, the field has been starting to think about the interactions between our mind and our nervous system as well. Psychology considers both the explicit (or, the conscious) and implicit (or, subconscious) processes. For example, from a psychology headset, we could think about how our biases [sez - Aus, seez = US] operate beneath the surface of conscious awareness and shift our perceptions and judgements, which can then shape our behaviour without us really being aware of it. It’s a scientific discipline, so we use research practices to gather psychological knowledge, and then apply this to help understand and treat different issues - whether it relates to our biological, social, physical and mental health, or broader community. The application of psychology is so wide-ranging. Psychology and GPPPD (Vaginismus/Dyspareunia): This means that even within the area of genito-pelvic pain such as GPPPD / vaginismus, there is SO much to consider from a psychology headset. Yet, often, it is dismissed as being purely medical/physical and simply requiring physical therapy or medication. OR, we see the opposite, that it’s “all in your head” and 100% psychological in nature. Can you hear the eye roll in my voice as I’m saying this? Really - we know that it’s a mix of both biological, psychological, and social-contextual factors that interplay within GPPPD. A good medical or allied health professional should take a holistic approach to understanding and managing genito-pelvic pain and sexual pain conditions. This means looking at the biological, psychological, and social or contextual factors at play. Ultimately, this is why we recommend a team based approach with a range of different professionals as needed - for example, a gynaecologist, women’s health physiotherapist or physical therapy, and a psychologist or sex therapist would be a pretty standard team. Biopsychosocial framework: So what does a biopsychosocial framework for understanding GPPPD look like? Let’s go through an example together. Keep in mind this example is based on factors that have been identified through research in the area rather than a specific case example from a real patient. Biological factors Let’s start with biological factors. There are so many biological and medical issues that can cause or contribute to GPPPD. Some of the most common ones include infections, dermatological conditions (e.g. allergies,lichen sclerosus), nerve issues, trauma for example tears or episiotomy scars from giving birth), hormonal issues for example as part of menopause, side effects from chemotherapy or radiation, or structural issues like endometriosis or hymen abnormalities. This is why it’s so important to have a good assessment from a gynaecologist, and also why other specialists like dermatologists might need to be involved as well. Two of the most common physical issues are pelvic floor dysfunction - so, pelvic muscles not contracting or relaxing as well as they should, and vulvodynia which is pain localised to the vulval region. As you can see, there’s heaps to unpack within biological factors. It’s so important to understand exactly what is happening so that a treatment plan can focus on the right areas. And you can see why it’s so frustrating when people are told it’s all in their head! Psychological factors Now, moving on, I could spend all day talking about the role of different psychological factors and processes. Actually, if this is something you’d like to really deep dive into, then let me know - we might be able to dedicate a few more episodes to this if there’s enough interest. Instead of covering all of the different thoughts, feelings, beliefs, biases, etc, I’ll just run through two of the most common psychological factors. Firstly - the role of anxiety and fear. This is SUCH an important consideration when we’re thinking about GPPPD because there is an established process that typically occurs: a pain and anxiety cycle. Often, GPPPD might start with a painful experience (for example, when using a tampon or during intercourse)
PODCAST #10. Myths about genito-pelvic pain (GPPPD; Vaginismus, dyspareunia)
Hi there! Thanks for joining in for Episode 10, Season 1, of The Sensate Space podcast. Join us as we dispel common myths about genito-pelvic pain/penetration disorder (GPPPD), a pelvic and sexual pain condition encompassing vaginismus and dyspareunia. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Introduction Hi there! In this episode I will debunk five common myths that surround genito-pelvic pain/penetration disorder (or GPPPD - which encompasses conditions like vaginismus and dyspareunia). From misconceptions about fertility to misunderstandings about the nature of GPPPD itself, we're here to separate fact from fiction and provide a clearer perspective. So, join us as we unravel the myths and reveal the truths about an often misunderstood condition. Content warning This episode briefly mentions abuse, painful intercourse, and pregnancy. Introduction Myths about GPPPD are a problem because they perpetuate misinformation and stigma, making it even more challenging for individuals dealing with this condition. These myths can lead to feelings of isolation, shame, and misunderstanding, hindering the pursuit of accurate information and effective treatment. So, with that in mind, let’s walk through some of the most common ones. Main Points Myth #1: Can't Get Pregnant with GPPPD This myth suggests that individuals with a Genito-Pelvic Pain disorder can't conceive, which is not true. While some may find intercourse challenging or not possible due to their condition, others can still engage in sexual activity and fall pregnant. Additionally, assisted reproductive methods are available for those facing difficulties. The ability to give birth without intervention is also possible but varies depending on the individual's specific presentation. Myth #2: Can't Have Sex It's a common misconception that people with this condition can't have sex at all. In reality, GPPPD exists on a spectrum, with some individuals experiencing a complete muscle barrier that makes intercourse challenging, while others can engage in sexual activity with varying degrees of discomfort or pain. Myth #3: Can't Be Cured Contrary to this myth, GPPPD is a treatable condition. Various therapeutic approaches, including physical therapy, psychological therapy, and medical interventions, can significantly improve symptoms and quality of life for individuals with GPPPD. Myth #4: It's Only Caused by Abuse GPPPD has multiple potential causes, and while a history of abuse can be a contributing factor (as the body may react to protect itself), it's just one of many factors. Having GPPPD doesn't automatically indicate a history of abuse. It’s so important that we avoid making assumptions about underlying causes. Myth #5: It's All in Your Mind While psychological factors like anxiety, shame, or disgust can play a role in GPPPD, it's primarily a physical condition. The pain and discomfort experienced by individuals with GPPPD are rooted in physical factors such as muscle tension and spasms. Recognising both the physical and psychological aspects is crucial for effective treatment and support. Summary So, there you have it - the top 5 myths we hear in relation to genito-pelvic pain disorder. I hope this helps you clear any misconceptions you may hear and maybe even provides some reassurance. Finally, before you go - if you found this helpful please share with anyone who might find it helpful. And remember to check out the resources on our website, thesensatespace.com Until next time, take care! You’ve got this. --- This is a psychology podcast about vaginismus and other pelvic and sexual pain disorders, and related issues (genito-pelvic pain/penetration disorder, dyspareunia, vulvodynia, painful intercourse, gynaecological pain, sexual dysfunction, chronic pelvic pain) for the purpose of education and collaboration; it’s not therapy or medical advice. Information is general in nature and does not replace individualised assessment or treatment advice. Please seek professional support tailored to your specific needs. If you or someone you know is in crisis and needs help now, call triple zero (000). You can also call Lifeline on 13 11 14 — 24 hours a day, 7 days a week. Please see our About page for more information. PS - Check out our goodies! Stickers, therapy trackers, and more available via our Shop
PODCAST #9. Six Tips for Managing Sexual Pain Symptoms (Vaginismus, dyspareunia)
Hi there! Thanks for joining in for Episode 9, Season 1, of The Sensate Space podcast. To counter our recent episode about bad advice for treating vaginismus/GPPPD and similar issues, this episode highlights six tips for managing sexual pain symptoms. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Introduction Coming off the back of our ‘bad advice’ episode, let’s counter that messaging with some more helpful considerations. We’ll go through our top 6 pieces of better advice for people with genito-pelvic pain. As always, this information is general in nature - it’s not medical or psychological advice. Just a general picture, some reflections about what can make managing this condition a bit smoother. Main Points Top #1. Don't Go Alone. You deserve support. A strong support system can help you manage this condition by helping you to troubleshoot barriers, overcome setbacks, remain accountable, and celebrate your efforts and wins. Your support network should consist of individual/s who are safe, understanding, and validating. In an ideal world, both a professional treatment team and a personal social network can provide you with support. First, consider assembling a treatment team consisting of healthcare professionals experienced in pelvic pain management. They can provide specialised guidance tailored to your needs. If financial barriers are a concern, you can explore options at university medical centres where you might access affordable or research-based treatments. You can also check with your doctor if there are any bulk-bill or lower cost options available. From a treatment team perspective, make sure you seek professionals who are experienced in treating genito-pelvic pain conditions, as mistreatment can be much more harmful than helpful. You can screen for this by asking reception when booking an appointment, and have a look to see what is listed on their website. It’s also so important that you feel comfortable with the professional or professionals in your treatment team - It’s also absolutely crucial that you feel like you can trust them, and that you feel safe around them. Equally important is seeking support from your personal connections, if it is safe for you to do so. Reach out to friends or family members you trust and share your experiences with them. Your social network can include a partner, best friend, family member, or other loved one. You might have one close support person or a handful - each to their own. Alternatively, some people find the most support and connection in online support groups - this is a valid option to explore, too. Moving on to tip #2 - Eliminate the guesswork. Start with getting a really thorough assessment of your condition that considers all the possible diagnoses, co-occuring conditions, and contributing factors. From here, your treating professionals can help you to tailor a treatment plan. Understanding the specifics of your genito-pelvic pain is crucial for tailoring effective treatments. It's like having a map to guide your journey. Next, Tip #3 - Build Treatment Habits: Instead of relying solely on bursts of motivation, focus on building consistent treatment habits. Consistency is key. When we think about motivation vs habits - Motivation provides the initial spark, but it tends to fade as time goes on. That's where habits come in. While motivation is essential to start and boost behaviour change, it's habits that ensure long-term success. Habits make actions automatic, which reduces the reliance on fleeting bursts of motivation. Habits are the true foundation for lasting behaviour change. In essence, motivation gets you in the race, but habits keep you running toward the finish line. Okay, Tip #4. Educate yourself. Learn About the Condition: Knowledge is your ally when dealing with GPPPD. The more you know about the condition, its causes, and potential treatments, the better equipped you'll be to make informed decisions about your care. This doesn’t mean relying on Dr Google - it might mean making a list of the questions you can ask your treating professional, looking for book recommendations, or scouring a research database. And don’t underestimate the value of lived experience - connecting with peers navigating the same as you can also really help. Next, Tip #5. Look After Your Body: Pay attention to what your body needs, whether it's practising relaxation techniques, maintaining pelvic floor health, or adopting physical therapies. Caring for your body is an important part of a bigger picture treatment plan. This includes finding ways to manage your stress. General health and mental health aside, looking after your body is important specifically for treating this condition due to the relationships between stress, muscle tension, and pain experiences. So, we know that stress can manifest physically, which often leads to increased muscle tension, including in the pelvic floor muscles. When these muscles remain tense, they can exacerbate pain during intercourse. To counter this, exploring relaxation techniques, such as progressive muscle relaxation, can help to release overall body tension. We also know that stress can change how we experience pain. So, stress itself can amplify pain experiences. It's a bit like turning up the volume on an already noisy background – stress can make pain feel more intense and distressing. By learning to manage stress, you're not only improving your overall well-being but also gaining better control over your pain. Similarly, Tip #6. Look After Your Mind: Don't underestimate the role of your mental well-being. Managing GPPPD can be emotionally challenging. Seek support for your mental health as often as needed. A healthy mind contributes to a healthier body. We also know that mental health conditions are more likely to co-occur with GPPPD than the general population, so make sure that you are considering this within your broader treatment plan. Whenever I think about the role of stress and wellbeing, one of my favourite books always comes to mind. ‘Burnout’ by Emily and Amelia Nagoski is an absolutely wonderful guide to
PODCAST #8. How common is GPPPD? (Vaginismus, dyspareunia)
Hi there! Thanks for joining in for Episode 8, Season 1, of The Sensate Space podcast. This is a short episode about a research study from 2021 that examined how common is GPPPD (genito-pelvic pain/penetration disorder; aka vaginismus, dyspareunia) and related factors. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Introduction This is a short little episode to talk about an interesting study that was published in 2021, looking at the prevalence of genito-pelvic pain/penetration disorder or, as I’ll refer to it in this episode, GPPPD. If you need a refresher on GPPPD then check out episode 2. Basically - it refers to a sexual pain disorder, and the term encompasses conditions that have been known as vaginismus and vulvodynia. This study by Drs Azim, Happel-Parkins, Moses, and Haaroerfer looked at almost 1000 US women and their experiences of pain during intercourse. The authors also captured some information about some of the factors that contribute to the condition. This paper was published in The Journal of Sexual Medicine, check the show notes for the full reference. This is a peer-reviewed article, which means that experts in the field carefully assessed and validated the quality and accuracy of the paper. This is important because it secures the reliability of scientific findings and maintains trust in the research community. In other words - it’s considered high enough quality to be accepted in the field. Limitations of the study: Now, Limitations: Before we get started, it's important to acknowledge limitations in this study that should be considered when interpreting the findings. Firstly, the sample was restricted to college students, which may not fully represent the broader population. Secondly, this study exclusively focused on cisgender women, which leaves out valuable insights from individuals who identify as transgender or non-binary. Gender identity can play a crucial role in how individuals experience and perceive sexual health issues, and by not including diverse gender identities, the study may not capture the full spectrum of GPPPD experiences. Future research should strive to be more inclusive to provide a more comprehensive understanding of this complex issue. As you listen to the findings presented in this episode, it's essential to keep these limitations in mind. While the study offers valuable insights into the prevalence of painful sex and its associations with psychosocial factors among college cisgender women, it may not fully represent the broader population or the experiences of individuals with diverse gender identities. These limitations underscore the need for ongoing research that encompasses a more diverse range of participants to enhance our understanding of GPPPD. So what have we learned from this study? This research study investigates GPPPD and its association with psychosocial factors among sexually active female college students. Psychosocial refers to both the psychological or mental aspects, and the social context. Data was collected from 974 college women, and the findings revealed that GPPPD was prevalent among these young women, with about 19% experiencing frequent pain and about 24% experiencing occasional pain during intercourse. ^ I find this fascinating because imagine if almost half of the male population found sex painful this regularly - I’m sure there would be a tonne of research being dedicated to it! Beyond prevalence, the study aimed to understand how religiosity, sexual education, sex guilt, and sexual distress relate to painful sex experiences amongst college-aged women. The authors found that, while religiousness itself doesn't have a direct effect, it does contribute to painful sexual experience when it causes sex guilt. This has implications when we think about populations that preach abstinence and shaming about sex. With this in mind, the authors note that it’s important for healthcare providers to start open and judgement-free discussions with their young female patients about dysparuenia (ie painful sex). Summary So, to summarise - In this study, it was found that a staggering 43.2% of women, nearly half of the participants, experienced pain during intercourse, with almost 1 in 5 facing frequent discomfort. This prevalence highlights how common this issue is, yet it’s still not largely acknowledged by the general public. Okay, that brings us to the end of this micro-sized research snapshot. Before you go - if you found this helpful please share with anyone who might find it helpful. And remember to check out the resources on our website, thesensatespace.com Until next time, take care! You’ve got this. References: Katharina A. Azim, PhD and others, Exploring Relationships Between Genito-Pelvic Pain/Penetration Disorder, Sex Guilt, and Religiosity Among College Women in the U.S., The Journal of Sexual Medicine, Volume 18, Issue 4, April 2021, Pages 770–782, https://doi.org/10.1016/j.jsxm.2021.02.003 --- This is a psychology podcast about vaginismus and other pelvic and sexual pain disorders, and related issues (genito-pelvic pain/penetration disorder, dyspareunia, vulvodynia, painful intercourse, gynaecological pain, sexual dysfunction, chronic pelvic pain) for the purpose of education and collaboration; it’s not therapy or medical advice. Information is general in nature and does not replace individualised assessment or treatment advice. Please seek professional support tailored to your specific needs. If you or someone you know is in crisis and needs help now, call triple zero (000). You can also call Lifeline on 13 11 14 — 24 hours a day, 7 days a week. Please see our About page for more information. PS - Check out our goodies! Stickers, therapy trackers, and more available via our Shop
PODCAST #7. Sexual pain myths: Top 5 pieces of bad advice for vaginismus
Hi there! Thanks for joining in for Episode 7, Season 1, of The Sensate Space podcast. In this episode we cover the most common sexual pain myths and bad advice for vaginismus / GPPPD and other sexual pain and pelvic pain conditions. Content warning: This episode discusses genito-pelvic pain. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly In this episode, we’re covering the top pieces of misguided advice often given to those who experience genito-pelvic pain like GPPPD / vaginismus. This is a good episode for people with this condition, as well as professionals or loved ones caring for someone with condition. I am to provide accurate information, reduce stigma, and help you understand why these misconceptions can be harmful. Honestly, I had to take a bit of a step back when planning this episode. Thinking about all the experiences that I’ve heard from people with sexual pain disorders - it’s so frustrating and shows a real lack of understanding. So that’s the why behind this podcast episode - to get better information out there and reduce some of the stigma. Anecdotally, I would say it’s the rule rather than the exception that people with genito-pelvic pain are given some terrible advice - whether it be from well-meaning family members or loved ones, or from professionals who aren’t as familiar with the condition as they should be. There are some common themes that seem to be reported by people with lived experience - which keep coming up again and again and again. So firstly - Why is bad advice, bad? Of course, bad advice can be really frustrating. But the issue runs deeper. Bad advice can be a real barrier to people seeking professional help and getting effective treatment - particularly if they think that it’s a problem with themselves, not the advice, that is stalling their progress. When subpar advice falls short, it can make patients feel at fault - even though the advice was unlikely to help anyway. They are less likely to be open to trying other options, and more likely to experience self-blame and self-criticism. It can worsen feelings of shame, and cause people to question whether they might be unknowingly contributing to their condition (this is where spiritual and/or cultural beliefs can impact, too - just something to keep in mind). Moreover, poor advice can deter individuals from openly sharing their experiences, or leave them feeling misunderstood or feeling like they’re not being taken seriously. This can also begin to impact relationships, even if the advice-giver is meaning well but misunderstands the condition. Actually, giving bad advice can be a form of gaslighting. It usually comes across as invalidating - e.g. just try this one thing and you’ll be fine, or - it’s all in your head just relax about it. This can lead people to think that they’re just not trying hard enough or wanting it enough. So, to sum it up, poor advice goes beyond causing frustration; it can create real roadblocks for those managing genito-pelvic pain conditions. We can’t keep thinking of it as ‘harmless advice’ with the risks we’ve just discussed. So, with this in mind, let’s go through the top 5 pieces of bad advice most commonly given to this community. You can think of these 5 points as red flags - not necessarily against the person, but more so an indication that they might not have as much understanding or expertise in assessing and treating for this condition as you might need. 1. "Just relax" The first piece of bad advice is being told to “Just relax.” Telling someone with genito-pelvic pain disorder or vaginismus to "just relax" is so common. Variations of this can include being told to just “have a glass of wine” or have a bath first. Honestly, being told to “just” relax carries the same vibes as being told to ‘calm down’ when you’re angry - it kinda backfires. Similarly, it’s a bit like telling someone with depression to be happy, or with disordered eating to eat normally. It’s an outcome, not a strategy. Being told to “just relax” is unhelpful because it oversimplifies a complex medical condition. This disorder is typically characterised by involuntary muscle spasms and tension in the pelvic floor, making it nearly impossible for individuals to relax at will (although this is a skill that can be learned with physiotherapy!). As I’ve said, such advice can inadvertently add pressure and guilt, implying that the condition is solely due to the person's stress or anxiety, when in reality, it is a multifaceted medical issue that requires understanding and specialised treatment. 2. "It's supposed to hurt... keep trying" The next piece of bad advice is the idea that “It’s supposed to hurt,” or push through the pain and just keep practising. From a very young age, female-presenting people are exposed to this idea that it’s normal for sex to hurt (so - for example, think of all the coming-of-age teen movies talking about painful first times). Similarly, uterus-owners are often dismissed when reporting pelvic pain such as endometriosis flares. We don’t speak enough about the fact that pain isn’t normal, and it isn’t something we should expect to live with. This idea of “just push through the pain” is dangerous and counterproductive. In vaginismus, there's a phenomenon known as the pain-anxiety cycle. Here's how it works: when individuals with vaginismus expect pain during sexual activity due to their past experiences, they naturally become anxious and tense. This heightened anxiety causes their pelvic floor muscles to involuntarily contract, making penetration even more painful or impossible, which in turn confirms their fear of pain. (The key word here is involuntary - think about how you blink when something comes near your eye. Same thing). This creates a cycle where pain and anxiety feed into each other, making
PODCAST #6. What does that mean? Unpacking jargon in pelvic pain care.
Hi there! Thanks for tuning in. This is episode six of The Sensate Space podcast, a psychology show about vaginismus / GPPPD and other pelvic and sexual pain disorders. In this episode we unpack the essential pelvic pain jargon and vocab so that you can make the most of your healthcare experiences. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly What have we missed? Let us know! SUMMARY Feeling a bit overwhelmed with all the pelvic pain jargon and words that are used in your medical or allied health appointment? In this episode, we discuss: Common terms used in pelvic and sexual pain treatment (demystifying medical jargon!) Definitions and explanations of terms like dyspareunia, vaginismus, GPPPD, vestibulodynia, vulvodynia, atrophy, dystrophy, neuralgia, neuropathic pain, and nociceptive pain. CHEAT SHEET Dyspareunia: Painful intercourse, which can be introital (at the entrance) or deep in the pelvis. Vaginismus: A condition where muscle contraction creates a barrier to intercourse, Pap smears, or tampon use. Genito-pelvic pain/penetration disorder (GPPPD): An umbrella term encompassing dyspareunia and vaginismus. Vestibulodynia: Pain or discomfort in the vestibular area. Vulvodynia: Chronic pain or discomfort, often described as burning or stinging, in the vulvar region. Atrophy: The wasting away or reduction of body parts or tissue, often due to hormonal changes. Dystrophy: Abnormal growth or development of body parts or tissue. Neuralgia: Sharp, severe, and recurring pain along the course of a specific nerve or nerve pathway. Neuropathic pain: Pain caused by damage or dysfunction of the nervous system, often described as shooting or burning. Nociceptive pain: Pain caused by the activation of pain receptors (nociceptors) in response to tissue damage or injury. TRANSCRIPT This episode was designed to help you get familiar with common terms so that you can better understand some of the language used by professionals, written in your referrals, and access the research more easily. A good professional should always talk in plain, everyday language - but unfortunately that isn’t always the case, especially if they might be busy or rushed. It’s not up to the patient to have to do the work - but sometimes it can help in the moment. You can - and should - always ask for clarity. It's your right to understand what is happening in your care, and it’s the role of the professional their role to explain to you in a way that makes sense - in plain English, particularly if you’re consenting for a service (on that note - we have an earlier episode on medical consent, available at thesensatespace.com/pod2 that’s p-o-d-numeral2 if you’re interested) So. This episode I’ll introduce some common terms that may or may not be relevant to you as you seek help in this space. These are terms that professionals might use when they talk to you, or you might see included in your medical history/notes or referrals. It’s not an exhaustive list, just a start, but I’d love to hear from you if you can think of some more terms I should cover - reach out on Insta or via the website contact page. I’ve included the definitions in the show notes, so there’s no need to try to memorise it all while I’m speaking! We’ll start with a really common one - dyspareunia. Dys meaning difficult or impaired, and pareunia meaning sex. So dyspareunia is a term used in medical circles to refer to painful intercourse. You might also hear the term ‘coital pain’. Within this, a patient can have introital dyspareunia, or pain at the entrance or opening, or it can be deep dyspareunia which refers to pain deep in the pelvis or lower abdomen. You might also hear the term “vaginismus”. This refers to a condition where muscle contraction where the muscles act as a physical barrier to intercourse, Pap smears or using tampons, etc. Genito-pelvic pain/penetration disorder or GPPPD is a fairly new diagnosis, only used in the last ten years with the release of DSM-5, a diagnostic manual. It’s classed as female sexual dysfunction, and encompasses two earlier conditions known as dyspareunia and vaginismus. So, in recent years the research will refer to this condition, but older studies will use the earlier terms. Your professional might use either term, or both. GPPPD is an umbrella term, A broad title m encompassing various sexual pain disorders. Next, is the suffix or word ending “dynia”. Dynia just means “pain” or “discomfort”. Some ways that you might hear this in the pelvic pain space is when professionals refer to vestibulodynia - so vestibular pain or discomfort, or vulvodynia - which is a term used to describe chronic pain or discomfort (usually a burning or stinging) in the vulvar region. Okay, two more terms that you might hear of are atrophy and dystrophy. Atrophy is when body part or tissue wastes away or reduces, for example due to hormonal changes. Dystrophy is the opposite - that’s when we see abnormal growth. Next we have two related - but slightly different terms - neuralgia and neuropathic pain. Neuropathic pain is a broad term that refers to pain caused by damage or dysfunction of the nervous system. It’s often described as a shooting or burning sensation. Neuralgia is a more specific term referring to sharp, severe, and often recurring pain along the course of a nerve. It can be a type of neuropathic pain but is generally used to describe pain that is localized to a specific nerve or nerve pathway. So, while neuropathic pain is a broader category encompassing pain resulting from nervous system damage, neuralgia specifically refers to sharp, severe pain along specific nerves or nerve pathways. Neuralgia can be a type of neuropathic pain, but not all neuropathic pain is neuralgia. Finally, we have nociceptive pain. This is pain caused by the activation of nociceptors (pain receptors) in response to tissue damage or injury -
PODCAST #5. Teamwork Makes the Dream Work: Building Your Pelvic Pain Treatment Team
Hello dear listener! This is episode five of The Sensate Space podcast, a psychology show about vaginismus / GPPPD and other pelvic and sexual pain disorders, this time talking about our recommendations for building your pelvic pain treatment team. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly SUMMARY Feeling stuck with your progress? Wondering what your option for pelvic pain treatment support might be? In this episode we discuss: The importance of a team approach in treating pelvic pain conditions. Three main points to consider when building your treatment team: trial and error, changing treatment needs over time, and co-occurring conditions. Which professionals to consider including in your treatment team and why Barriers to accessing a treatment team. TRANSCRIPT Welcome back! In this episode, we'll explore why a team approach to treatment is so important. I’ll walk you through some of the various professionals who can assist you and practical steps to access the care you require. Having a solid support team can make a world of difference in treating pelvic pain conditions like genti-pelvic pain/penetration disorder (or GPPPD) because each professional has a different skill set. Generally speaking, these conditions are multifaceted and each person is likely to be a bit different in what they need for support. That is, treatment works best when it’s targeted to the individual rather than a one size fits all. A good treatment approach should address biopsychosocial factors: your biology and physical body, the mind, and your broader context. Main Points To Consider When Building Your Pelvic Pain Treatment Team There are three main points to consider when you’re thinking about building your treatment team. First of all, there might be a bit of trial and error to work out who you need and in what capacity. Sometimes it might just be a once off assessment - to work out a treatment plan or rule out other issues - but other times you might need ongoing support and coaching to do the work. Secondly, be aware that your treatment needs might vary over time, depending on what is happening in your life at the time. Having general health issues? Relationship changes? Feeling stressed or run down? This can all change how your body is functioning, including altering your pain experience. Finally, there are many conditions that co-occur with pelvic pain - physically and psychologically - so different professionals can play a role in screening for or helping you manage these conditions too, as this can also impact your pain experience. So, with those three points in mind, let’s walk through some of the different services that can form part of a treatment team. Now, I’m speaking from Australia so if you’re overseas it might mean that some of the referral pathways or titles are a bit different. Services That Can Form Part of a Pelvic Pain Treatment Team General practitioner or GP: Your usual doctor is a perfect starting point. They can give an initial opinion, manage referrals, screen for co-morbid issues, and keep eyes on your treatment overall. They’re generally a first port of call, so to say. Next we have a gynaecologist. Gynaecologists can undertake a thorough assessment of your concerns, and explore treatment options like medication and surgery as required. They usually require a referral from your treating doctor. Women’s health physiotherapist (physical therapist if US based) is another important member of the treatment team for many people with this condition. It’s important to see a physio who specialises in pelvic floor work and pain management. They can assess to see if your pelvic floor is functioning as it should and, if not, what you can do about it. Physio’s can also have a wealth of knowledge around pain management, and can help with some of the mental blocks to treatment too. You can usually self-refer, but it is useful to have them linked in with your treatment team. In some cases, a dermatologist specialising in women’s health conditions can be helpful to rule out or treat any skin issues. You can talk to your GP about whether or not this may be useful in your case. Next, a sexologist or sex therapist can help to identify any psychological and/or sexual barriers, and help you to move past them. They can also help with relationship issues relating to intimacy, including couples work (depending on the therapist). Sexologists can also be a great source of education - I’ve been speaking with friends over the years about just how little we learned in school sex ed - about our bodies, consent, communication, etc, and a sexologist can help fill in the gaps. Finally, you can consider a psychologist on your team. GPPPD is multifaceted and working with the body and the mind has the best outcomes for treatment. Depending on what you need, find someone that is experienced in pain management and sexuality. They can help you to identify and work through any psychological barriers to treatment. We also know that GPPPD co-occurs at a higher rate with anxiety and depression than the general population, which can further interact with pain experiences, so it’s important to make sure that your mental health is cared for too. This is just a starting point - obviously you don’t need to see everyone at once, but a thorough assessment from a gynaecologist and women’s health physiotherapist is a really solid starting point. If you feel stuck, consider seeing what some of the other services have to offer. What other services can you think of? What has helped you? Now, I do understand that it is a privileged position to be able to access a full treatment team, unfortunately. These services are inaccessible to a lot of people due to cost, distance (if you’re in the country), and long waitlists. If ongoing treatment isn’t an option,
PODCAST #4. Release and relax with extended exhale breathing.
Hello dear listener! This is episode four of The Sensate Space podcast, a psychology show about vaginismus / GPPPD and other pelvic and sexual pain disorders, this time exploring the extended exhale breathing technique for whole-body relaxation. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT Hi there, welcome! Thank you for sharing your time with me today. This episode, we're talking about extended exhale breathing – a simple technique that can be pretty powerful. If you're tackling stress, or need to reduce whole-body muscle tension to then help reduce your pelvic pain, or you’re just looking for a little boost in your day - this might be the tool for you. Inhale. Exhale. The rhythm of our breath is so much more than just a biological necessity – it can influence our body's response to stress and promote a state of relaxation. One technique that is particularly known for its calming effects is "extended exhale breathing." So, by breathing out for a slightly longer duration than breathing in, you can activate the parasympathetic nervous system. This leads to a cascade of physiological responses that support relaxation. What happens in our body? When we exhale for a longer period than we inhale, we engage the parasympathetic nervous system. This branch of our autonomic nervous system is often dubbed the "rest-and-digest" mode – it's responsible for slowing down our heart rate, reducing blood pressure, and creating an overall sense of calm. The vagus nerve, a really important part in this system, gets stimulated during an extended exhale. This stimulation then triggers a series of responses that culminate in a state of relaxation. So, Imagine it like a switch that shifts your body from the stress-driven "fight-or-flight" mode to a more restorative state. Research spotlight Recent studies have delved into the effects of different breathing patterns on heart rate variability (HRV), which is a marker of autonomic nervous system activity. Two studies conducted by Bae et al. (2021) and Laborde et al. (2021) have recently explored the benefits of extended exhale breathing. Their results echoed what yoga practitioners have been advocating for centuries – that a prolonged exhale duration correlates with heightened parasympathetic activity and increased HRV. Essentially, this means that individuals who exhale for a longer duration than they inhale exhibit greater signs of relaxation. Now, these are only small studies that provide a scientific glimpse into the power of extended exhale breathing but it does align with older Eastern practices. So, watch this space! How do you do extended exhale breathing? So, how can you tap into this technique for your well-being? It's simple. During deep breathing exercises, pay attention to the length of your exhale. Aim to make it slightly longer than your inhale. You don't need a timer; just allow your breath to flow naturally, extending the exhale gently. As you do this, you're activating the parasympathetic nervous system, invoking a relaxation response. It shouldn’t be uncomfortable, and it shouldn’t leave you lightheaded or wheezing. If you’re prone to this, check in with medical attention first. And obviously - never do any relaxation exercises while doing something demanding like driving or if you have a history of breathing or medical difficulties. For those of you with muscle tension and pain-related issues like GPPPD, extended exhaling can be a useful strategy to assist with invoking a relaxation response prior to, and during, physical examinations or dilation therapy. Best of all - it’s a tool you can take with you wherever you go. Summary To recap, extended exhale breathing is an on-the-go tool you can tap into when you need to release some tension in your body. It’s a chance to stop and check in with yourself, essentially allowing a pause and giving yourself some more time and space during the day. PS - this is one of the tips mentioned in our free guide to managing physical examinations when you have pelvic pain. Make sure you grab your copy at thesensatespace.com to read our other strategies! References Bae, D., Matthews, J. J., Chen, J. J., & Mah, L. (2021). Increased exhalation to inhalation ratio during breathing enhances high‐frequency heart rate variability in healthy adults. Psychophysiology, 58(11), e13905. https://pubmed.ncbi.nlm.nih.gov/34289128/ Laborde, S., Iskra, M., Zammit, N., Borges, U., You, M., Sevoz-Couche, C., & Dosseville, F. (2021). Slow-paced breathing: Influence of inhalation/exhalation ratio and of respiratory pauses on cardiac vagal activity. Sustainability, 13(14), 7775. https://www.mdpi.com/2071-1050/13/14/7775#:~:text=The%20aim%20of%20this%20study,inhalation%20phase%2C%20confirming%20our%20hypothesis. --- This is a psychology podcast about vaginismus and other pelvic and sexual pain disorders, and related issues (genito-pelvic pain/penetration disorder, dyspareunia, vulvodynia, painful intercourse, gynaecological pain, sexual dysfunction, chronic pelvic pain) for the purpose of education and collaboration; it’s not therapy or medical advice. Information is general in nature and does not replace individualised assessment or treatment advice. Please seek professional support tailored to your specific needs. If you or someone you know is in crisis and needs help now, call triple zero (000). You can also call Lifeline on 13 11 14 — 24 hours a day, 7 days a week. Please see our About page for more information. PS - Check out our goodies! Stickers, therapy trackers, and more available via our Shop
PODCAST #3. Making informed healthcare decisions: Using your B.R.A.I.N. to consent.
Hello dear listener! This is episode three of The Sensate Space podcast, a psychology show about vaginismus / GPPPD and other pelvic and sexual pain disorders, addressing the topic of informed consent in healthcare. You can listen in here or using the player below. Display content from Spotify Click here to display content from Spotify. Learn more in Spotify’s privacy policy. Always display content from Spotify Open "content" directly TRANSCRIPT In this episode, I’ll speak about the power of informed consent using a simple yet effective tool: the B.R.A.I.N. acronym. Whether you're faced with medical decisions for yourself or a loved one, understanding the Benefits, Risks, Alternatives, Intuition, and the option of doing Nothing can help you to make confident and informed choices. Informed consent is a necessary part of healthcare. At its core, it just means that a client or patient receives all the necessary information about a proposed procedure or treatment before giving their provider the go-ahead. This practice makes sure that patients are actively involved in their healthcare decisions and empowered to make choices. Informed consent is relevant regardless of the procedure, but it’s particularly important when there is risk of pain or adverse outcomes, or jeopardises your privacy. So, an example that comes to mind would be the benefits or risks of having a pelvic exam - whether the benefits outweigh the risks in that situation would depend on the individual and their unique situation. This is also discussed a little further in our free eBook guide to managing physical exams - check out thesensatespace.com for more information. I first heard the BRAIN acronym when learning about hypnobirthing strategies from author Hollie de Cruz. Now, I can’t see where it was first identified so if you know who coined the term let me know so I can credit them! B.R.A.I.N. is an acronym that stands for Benefits, Risks, Alternatives, Intuition, and Nothing. I’ll say that again - Benefits, Risks, Alternatives, Intuition, and Nothing. Let's take a brief look at what each component of B.R.A.I.N. represents: B.R.A.I.N. tool for informed consent in pelvic healthcare: Benefits: "First up is 'Benefits.' This involves understanding the potential positive outcomes or advantages of the proposed procedure or treatment. Think of it as asking questions like 'What benefits can I expect from this?' and 'How will this improve my condition or quality of life?'" Risks: "Next is 'Risks.' Being aware of potential complications is crucial. This part involves asking questions like 'What are the possible side effects or risks involved?' and 'Are there any long-term implications I should know about?'", or “Should I expect this to be painful?” Alternatives: "Now, let's explore 'Alternatives.' Considering other options is key. Ask questions like 'Are there alternative treatments or procedures available?' and 'What are the pros and cons of each option?'" Intuition: "Trusting your gut matters. 'Intuition' involves questions like 'How does this align with my beliefs and values?' and 'What does my inner feeling tell me about this decision?'" Nothing: "Lastly, we have 'Nothing.' Understanding the implications of not undergoing the recommended procedure is important. Ask questions like 'What happens if I choose not to proceed with this treatment?'" “What is the worst that can happen?” and “what is likely to happen?" Summary To recap, by applying the B.R.A.I.N. acronym, we can engage in meaningful conversations with our healthcare providers, and make sure that we have a comprehensive understanding of the benefits, risks, alternatives, and check in with our own intuition so that we can make a fully informed decision about healthcare. If this episode was relevant for you, you’d probably like our free eBook guide to managing physical examinations and pap smears, visit our website at www.thesensatespace.com to nab yourself a copy. Mentioned Resources Your Baby, Your Birth (Book) --- This is a psychology podcast about vaginismus and other pelvic and sexual pain disorders, and related issues (genito-pelvic pain/penetration disorder, dyspareunia, vulvodynia, painful intercourse, gynaecological pain, sexual dysfunction, chronic pelvic pain) for the purpose of education and collaboration; it’s not therapy or medical advice. Information is general in nature and does not replace individualised assessment or treatment advice. Please seek professional support tailored to your specific needs. If you or someone you know is in crisis and needs help now, call triple zero (000). You can also call Lifeline on 13 11 14 — 24 hours a day, 7 days a week. Please see our About page for more information. PS - Check out our goodies! Stickers, therapy trackers, and more available via our Shop