Soula Mantalvanos & Dr Susie Gronski talk about male pelvic pain and finding the right treatment

Dr Susie Gronski has been My Health Story’s (MHS) Advisor and Friend for several years. Founder of MHS, Soula Mantalvanos, has been closely connected with Dr Susie Gronski since 2017. Recently, Soula looked back at their 2021 pelvic pain chat and realised it was time to organise another catch-up with this incredible therapist.

Soula discovered Dr Gronski’s incredible resources while seeking information for the advocacy website she founded in 2011, pudendalnerve.com.au, to help people living with pelvic pain. This search – specifically for resources relating to treatment for male pelvic pain- stemmed from male followers contacting Soula directly, alerting her to the fact that finding help for pelvic pain if you’re a male is even harder than it is for women.

Men also don’t talk about their health issues like women tend to do, so the experience can be even more alienating and dangerous.

Dr Susie’s experience and insight have since also guided the design of the MHS system – specifically, in the Characteristics area, where users select ‘tags’ and ‘terms’ to describe their experience, and with the two most important questions in the Daily Living Questionnaire – What exacerbates the pain and What eases the pain. These are two questions that gather important details for a practitioner seeking to understand an individual’s lived experience, and, among all the references Soula consulted at the time to develop the editable Daily Living Questionnaire, neither was ever present.

So, MHS have a soft spot for Advisory member Dr Susie and the utmost respect for her knowledge and depth of experience.

Soula caught up with Dr Susie for a lengthy chat, and now you can view the clip below or skim the edited notetaker’s notes. But also, if you are a male experiencing pelvic pain, symptoms, dysfunction or have doubts or questions about anything, don’t hesitate to reach out to Dr Susie and her team or view their free resources.

Find Dr Susie

56 Central Avenue – Suite 103, Asheville, NC 28801
📱 Call or text: (828) 545-2996
📄 Fax: (828)-202-5896
✉️ support@drsusieg.com

Purpose

This interview aimed to discuss male pelvic pain and pelvic health issues, revisiting topics from a previous conversation in April 2021. The discussion focused on the challenges men face in accessing appropriate care, the role of pelvic health therapy, what happens during clinical evaluations, and how to improve communication around intimate health concerns.

Issues identified

• The medical community continues to dismiss or inadequately address male pelvic pain, with patients often told “there’s nothing wrong” or “penises sometimes just hurt”
• Significant barriers exist for men accessing compassionate, comprehensive pelvic health care
• Many medical providers do not examine the actual areas causing pain, including the genitals
• Male pelvic pain research is severely lacking compared to female pelvic health research
• Chronic pelvic pain syndrome is often misdiagnosed as prostate-related, when 95-97% of cases have nothing to do with prostate infection
• Men receive multiple unnecessary rounds of antibiotics due to misdiagnosis
• Difficulty for patients to articulate intimate health concerns due to shame, discomfort, and social-cultural messaging
• Undervaluation of physiotherapists/physical therapists as specialists in pelvic health
• Healthcare systems lack design strategy and creative communication approaches
• Patients experience trauma from repeatedly explaining symptoms to different providers
• General anxiety and tension affect mental health and healthcare access

Suggestions for individuals seeking help

• Seek pelvic health therapists after medical red flags are cleared
• Use visual tools and anatomical models to understand the body and pain
• Implement health tracking tools like My Health Story to help with documentation and communicating symptoms without repeated verbal explanations
• Print or send health stories to practitioners before appointments
• Consider physiotherapists as first-line specialists for pelvic pain and dysfunction
• Seek second opinions and continue searching for appropriate care providers
• Utilise online communities and social media platforms like Instagram to find specialised practitioners
• Prioritise trauma-informed, patient-centred approaches with ongoing consent
• Allow patients autonomy in choosing examination positions and procedures

Insights

• Language matters significantly in healthcare – using terms like “visit” or “session” rather than “exam” helps patients feel more comfortable
• Genital pain carries a unique psychological burden related to identity, sexuality, and daily function beyond other types of pain
• Most clinical reasoning comes from the patient’s story rather than the physical examination
• Context matters enormously for pain and sexual dysfunction – symptoms may change based on circumstances
• Expressing the inexpressible is part of recovery – catharsis and validation are therapeutic
• When patients understand why they hurt, they hurt less
• Building trust and a therapeutic alliance is as important as physical treatment
• Compassion and empathy are the most therapeutic tools a clinician can harness
• Chronic pain impacts cognitive function, concentration, and capacity on all levels
• Dr Susie allows two hours for an initial evaluation – proper time for story-gathering and building safety
• Not all examination components are necessary for improvement – treatment can be modified to patient comfort
• Newer generation physicians show more openness to collaborating with pelvic health therapists
• Pelvic health therapists are gaining presence at national medical conferences
• Direct access to pelvic therapy in the US allows patients to bypass referral requirements

Q & A summary

Soula: Are we still in a situation where the medical community is unable to help males with their pelvic symptoms?
Susie: Yes, we are still in the same situation. Not every medical provider is dismissive, but men with pelvic pain that has no known pathological or neurological origin are often told there’s nothing wrong or nothing can be done. This is very dismissive and invalidating. Recently, one patient was told, “penises sometimes just hurt; you have to deal with it.” These experiences create barriers to accessing compassionate, comprehensive care from pelvic health providers.

Soula: What are some common pelvic issues that men can experience? What is male pelvic pain?
Susie: Male pelvic pain is historically called chronic pelvic pain syndrome or CPPS, also known as chronic non-bacterial prostatitis. It’s defined as pain lasting in the lower abdominal or pelvic region for 3-6 months or more with no known pathology. It’s typically a diagnosis of exclusion. Symptoms include pain anywhere in the genital, lower abdominal, or perineal area – sharp, stabbing, dull, achy, tense, or tight sensations. Issues with pooping, peeing, and sexual function that feel “off.” Common concerns include erectile dysfunction, premature or delayed ejaculation, pain with erection or ejaculation, urinary urgency or frequency, painful urination, and sometimes bowel or bladder incontinence after prostate cancer treatments. Psychological issues like anxiety, depression, anger, and hopelessness are also common.

Soula: What happens when men come to see you? What’s the appointment like?
Susie: I call it a session or visit rather than an exam because language matters. The initial conversation starts with asking what brings them in, what concerns they have, and what’s weighing on their heart and mind. I spend the first half of nearly 2 hours getting to know their story, going through bladder, bowel, and sexual health screening. I give permission to say as much or as little as they want. After the medical review, I educate about the exam and proceed with permission, which continues throughout the examination. An external genital pelvic assessment includes visual inspection of the abdomen and tissues, observing muscle contraction and relaxation. External palpation assesses nerve tissue, such as the pudendal nerve, checking for tenderness and mapping pain areas. The final portion is an internal rectal exam in the patient’s chosen position. I assess pelvic floor muscle and sensation, and screen the prostate. Everything is done with ongoing consent and can be modified to individual comfort and sensitivity.

Soula: How does someone know who they need to see?
Susie: If experiencing pain with urination, abnormal discharge, blood in urine or stool, pain in the pelvic area, scrotum, or penis, get it checked out with basic blood work and urinalysis to clear medical red flags. Symptoms like urinary urgency or frequency, difficulty emptying the bladder, sexual dysfunction, or general tightness and soreness that impede everyday function are worth seeing a pelvic therapist. In the US, pelvic therapists are direct access providers – patients can walk in for evaluation. If the therapist suspects medical red flags, they’ll refer the patient to a urologist or another specialist. If all medical tests are clear and there are still no answers, definitely seek help from a pelvic health therapist. Any type of incontinence, pain with receptive anal sex or play, pain with intercourse, erection, or ejaculation should be evaluated.

Soula: How do visual models help in treatment?
Susie: The anatomical model shows male genitalia, superficial and deep pelvic floor muscles, and internal organs, including spine, rectum, anus, prostate, bladder, and penile structures. It’s very helpful because when trying to help people make sense of their pain, we must relate it back to parts they’re familiar with. When patients can see these parts, it helps them understand why they’re hurting. When you know why you hurt, you hurt less. Having understanding, a plan, and a supportive clinician alleviates much of the burden and suffering. It helps with sensory integration, neural refinement, brain-body connection, and building safety while reducing threat.

Soula: How do tools like My Health Story help patients?
Susie & Soula: Being able to express the inexpressible is part of recovery. It’s an important piece of therapy – building trust and the therapeutic relationship around distressing concerns. Language tools help people describe and talk about their experiences without having to repeat the trauma and stress. Patients can print their health story or send it before appointments so practitioners understand what’s going on before they arrive. This is especially important for intimate health issues that are difficult to discuss, and for people who may have difficulty speaking due to stroke or other conditions.

Soula: Physical therapists are undervalued in pelvic health.
Susie: Physical therapists are highly specialised and have extensive knowledge of the body. Pelvic health therapists are specialists who can help with pain, dysfunction, and spasms that people don’t typically associate with physical therapy. Many people think physical therapists only treat muscle injuries in arms or legs, not realising how much specialists know about the body and how they can address complex pelvic issues. Having a good physical therapist should be as essential as having an accountant or lawyer – they should be part of your lifetime healthcare team.

Soula: Has there been progress in male pelvic health awareness?
Susie: There is hope. More and more physicians and medical providers have a broad perspective and are open to collaborating with pelvic health providers. Their number-one referral source is a pelvic therapist for anything outside their scope of practice. Pelvic health therapists are gaining a presence at conferences such as the American Urological Association and sexual medicine conferences. However, the field is still very gynocentric or female-centric, and research around men’s pelvic pain is even more scarce than for women.