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).

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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 (such as autistic folks) because it can encourage masking behaviours - i.e. acting in a certain way or suppressing parts of yourself to, air quote, “fit in”. If you’re neurodivergent and are either interested in DBT or are currently learning DBT practices with a therapist, i’d recommend looking into one of my absolutely favourite ever therapy resources by Sonny Wise - Sonny is a multiply-neurodivergent lived experience educator who designed an adapted version of DBT that is neurodivergent-friendly. It’s wonderful, and actually really pretty too! (Which is unusual for therapy tools). Anyway, I digress..

DEARMAN technique for medical self-advocacy:

The first technique I would like to share today uses the mnemonic DEARMAN: D-E-A-R-M-A-N. It’s a skill, a bit of a template, for expressing yourself in a clear and effective way that can help you to get needs met. It teaches assertiveness, which is the ‘just right’ communication style in between being argumentative and permissive.

If you want to pause to get a pen and paper go for it, but this will all be in the show notes so you’re welcome to just listen.

DEARMAN stands for describe, express, assert, reinforce, mindful, appear confident, and negotiate.

So:

Describe: State the facts, without judgement or emotionality, and describe the situation
Express: Share your feelings using I statements. I feel…
Assert: Ask for what you would like.
Reinforce: Mention what the positive impacts would be.
Mindful: Stay focussed on your goal without getting distracted by other issues, be a ‘broken record’. Also be mindful of others feelings. Stay in the moment.
Appear Confident: What makes you feel confident? For many people it’s showing this in body posture - for example standing straight and tall, keeping chin up, etc. Play around with this and find what works for you.
Negotiate: What would you be willing to consider, or how can you help? What are you open to? You don’t have to ‘meet in the middle’, but show where you are willing to compromise. If you can’t think of any ways, you can also ask for ideas (this doesn’t mean you have to accept it).

There you have it - that’s DEARMAN. I would also add one more point, and that is to allow silence. Often, silence can feel really uncomfortable and so we talk to fill the gaps to avoid that. It’s often in these times we minimise ourselves or our requests (for example, saying something like “it doesn’t really matter though” “no worries either way”).

So what does it look like in action? Here is an example using a person with vaginismus / GPPPD who is looking for a treatment pathway or referrals.

Describe: "I've been experiencing pain and discomfort during intercourse for several months now. It's a sharp, burning sensation, and it's been happening consistently whenever my partner and I try to be intimate."
Express: "This pain is really affecting me emotionally and physically. I feel frustrated and anxious, and it's impacting my relationship with my partner. I worry about whether I'll ever be able to enjoy sex without pain."
Assert: "I need to address this issue and find a solution. It's not something I can continue to ignore or push aside."
Reinforce: "Addressing this condition and finding ways to manage it would greatly improve my overall well-being and quality of life. It would also help strengthen my relationship with my partner."
Mindful: "I know this is a sensitive topic, and I appreciate your understanding and expertise in helping me navigate this difficult situation. I’d like to resolve this today”
Appear Confident: Maintain eye contact and use a clear and strong tone to convey the importance of finding a solution.
Negotiate: "Could we explore treatment options for vaginismus together? I'm open to therapy, dilator exercises, or any other recommendations you may have. It's important to me that we find a solution that works for me and my partner."

There you have it, that is an example of DEARMAN in a real life situation.

Broken record technique for medical self-advocacy:

DEARMAN works really effectively when used in conjunction with another DBT skill: The ‘broken record’ technique.

This is a strategy whereby - as it sounds - you act like a broken record on repeat. It’s a way to assert your needs or requests in a calm and persistent manner, keeping the conversation on your goals, without getting derailed by the other person who might be trying to deflect, ignore, or downplay the situation.

To use the broken record technique, you want to:
State your request or need clearly
Stay calm
Persist
Avoid getting distracted
Repeat your request in a matter-of-fact manner
Be consistent until your perspective is acknowledged and considered

So, using our above example - if we have a person with vaginismus / GPPPD who is trying to access treatment, there is a chance that their concerns might be dismissed or downplayed. A professional might push back on their requests for a physical and psychological treatment options or referrals. Unfortunately, something that many members of our community have been told, is the idea of “just relax” or “have a wine”. You can check out the earlier episode on bad advice (www.thesensatespace.com/pod7) for more about this, linked in the show notes.

Using the broken record technique, here are some ways a patient could respond:
"Thank you for your suggestion, but the pain I'm experiencing is beyond just discomfort. It's impacting my emotional and physical well-being significantly.”
“I've tried [suggestion] without success. The pain persists consistently, and it's affecting my relationship with my partner and my overall quality of life."
"Yes, I've heard of [suggestion] and I'm willing to explore it as a potential treatment option. I'm hoping we can work together to develop a comprehensive treatment plan that addresses both the physical and psychological aspects of my condition."

So you can see in these examples above how the broken record technique helps to stay focussed on the end goal. You’re not being argumentative, it’s respectful, but you can still persistently advocate for yourself.

Broken record is really important for boundary setting, too.

Some ways that you can use DEARMAN and the broken record technique include:
to ask for more time to think about a treatment option
Ask for a follow-up appointment
Ask for a referral
Ask for a second opinion

Bonus tips:

I also wanted to share some phrases that you can use if you’re concerned or unsure about something. You could say:
“I don’t understand what this means”
“I am not consenting to this procedure”
“I’m concerned that this
“I don’t understand what this medication is for”
“I don’t understand how this medication works”
I don’t know about the side effects of this.
I’d like some time to think this through.
I’d like to talk this through with my support network

You can also ask to have it explicitly recorded in your notes that you asked about something and were denied it - i.e. asked for a referral and were told no. In Australia, you have the right to access your medical and healthcare records as part of our national privacy laws. There is more information about this available through the Office of the Australian Information Commissioner (OAIC), which I’ll link in the show notes.

Last of all, if you experience an encounter that is unprofessional, negligent, or downright harmful - please follow up with the related reporting pathways. There are structures in place to keep patients physically and psychologically safe.

Okay, let’s recap. We know that women and other female-presenting people can have a hard time being taken seriously when trying to access health services. This episode has outlined how you can use two DBT (or dialectical behaviour therapy) skills: the DEARMAN and broken record techniques, to help advocate for your needs - particularly in relation to pelvic and sexual pain conditions. I really hope this has been helpful for you.

Thank you again for joining me today for the very last episode of Season 1. I’m so grateful that you’ve listened in!

As always, make sure you follow along with us on socials - @thesensatespace_ on instagram, and check out the resources on our website, thesensatespace.com . Anything mentioned today will be listed in the show notes.

Until next time, take care! You’ve got this.

 

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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.

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