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Building the first structured care pathway for chronic vulvar pain - vulvodynia

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Today is Vulvar Awareness Day, and more people will hear the word vulvodynia than on any other day of the year. That matters. For most of the women who live with it, the first step towards care is knowing that what they feel has a name.

Awareness is where it starts, but we need to talk about what comes next. Women with vulvodynia are still left to manage fragmented pieces of healthcare on their own, and many eventually give up the search.

The problem is structural. Vulvodynia is barely taught in medical school, and almost no one funds research into it: the US National Academies’ 2025 review found funding for it down 38 percent in two years (NASEM 2025). Few clinicians are trained to look for the cause of the pain, and no one coordinates the care between the disciplines involved.

Until that changes, access depends on privilege and persistence. That is not access.

At HerAccess we are building the route: structured, specialist-led care that starts from the cause of the pain. The first step after awareness, though, is not something to build. It is being believed. If she tells you it hurts, believe her.

The full argument, written by our founder Stefanie Jolak and a gynaecologist who sees the same gap from the other side of the desk, is in the article linked in our bio.

Sources: National Academies of Sciences, Engineering, and Medicine. 2025. A New Vision for Women’s Health Research. Reed BD et al. 2012. Am J Obstet Gynecol.

#VulvarAwarenessDay #Vulvodynia #VulvarPain #WomensHealth #ChronicPain by @heraccess.eu

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a month ago

She has rehearsed the appointment. Tracked her symptoms for months. Written it all down. She has studies the research, tried what was suggested, and waited months to be seen. What she has not done is tell you everything.

Qualitative research on vulvodynia describes the route to diagnosis as a battle, and a healthcare system experienced as dismissive and inadequately informed. Women report being made to feel the pain was in their heads, and receiving advice they found patronising. Those experiences shape the next consultation — what gets said, and what gets left out.

One finding is worth sitting with. Persistent vulvar pain affects an estimated 8–16% of women, but only about half of those with symptoms seek help at all — and of the women who do, roughly 2% obtain a diagnosis.

That has a consequence for clinical impression. The women who stopped asking are not in anyone’s clinic. Any sense of what this patient group is typically like is drawn from those who had the resources to keep returning after being turned away.

This post is not one woman’s story. It is composed from themes described repeatedly across women we speak to.

At HerAccess we are building a structured care pathway for vulvar pain, coordinated across clinical specialties, with the woman at the centre of it.

Sources: Shallcross et al. 2018, Arch Sex Behav 47(3); Shallcross et al. 2019, Arch Sex Behav 48(3).

#vulvodynia #pelvicpain #womenshealth by @heraccess.eu

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2 months ago

A ‘normal’ examination is one of the most common findings in vulvar pain. It is also one of the most common points at which the search for an answer stops.

The 2015 ISSVD, ISSWSH and IPPS consensus defines vulvodynia as vulvar pain of at least three months’ duration, without a clear identifiable cause, which may have potential associated factors.

That last clause matters. Among those factors the consensus lists hormonal, musculoskeletal, inflammatory, neurological and psychosocial contributors — and concludes that vulvodynia is likely not one disease but a constellation of symptoms arising from several overlapping processes. The clinical recommendation follows: treatment chosen for the individual presentation, with an interdisciplinary approach described as the ideal.

In a 2019 study, only about half of women with these symptoms sought help at all — and of those who did, around 2% received a diagnosis.
That gap is not explained by clinicians who do not care. It is explained by a condition that sits between four specialties with no defined route through them.

At HerAccess we are building a structured care pathway for vulvar pain, coordinated across clinical specialties.

If you see women with vulvar pain in your practice, we would like to hear from you.

Sources: Bornstein et al. 2016, Obstet Gynecol 127(4); Shallcross et al. 2019, Arch Sex Behav 48(3).

#vulvodynia #womenshealth #pelvicpain by @heraccess.eu

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2 months ago

Better care for vulvar pain starts with knowing what you are looking for.
Vulvodynia is an umbrella term. The pain can come from very different underlying mechanisms: hormonal, musculoskeletal, nerve-related, inflammatory, and sometimes more than one at the same time.
Yet few clinicians receive dedicated training in how to tell these mechanisms apart. That is not a failure of individual doctors. It is a gap in the education they were given.
This is why clinician education is the foundation of HerAccess.
This week, we brought our clinical team together for our first full onboarding day — diving into pain mechanisms, diagnostic techniques, the patient experience, and how we build a shared clinical understanding across disciplines.
Because coordinated care is not just about bringing different specialists into the same pathway. They need to understand what each other is looking for and why.

After almost a year of building HerAccess, seeing that come together around the same table was pretty special.

This is where better access starts.

- Built on the clinical framework develop by Dr. @andrewtgoldstein - Clinical education led by Dr. Marie Abel @seksuaalnoustaja by @heraccess.eu

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3 months ago

Vulvar pain is not only about pain.
For many, it is also about what happens when you ask for help and are not believed.
Vulvodynia is not rare, but diagnosis is still far too rare. Among women with symptoms who seek help, only around 2% obtain a diagnosis.
Behind that number is something many women know too well:
Telling a doctor it hurts. Being told it might be stress, anxiety, tension or “just in your head.” Leaving the appointment feeling smaller than when you walked in.
And then having to do it all over again with the next provider.
That repetition has a cost.
Avoiding doctors is not always avoidance. Sometimes, it is what repeated dismissal leaves behind: the bracing, the distrust, the fear of not being believed again.
HerAccess exists because women with vulvar pain should not have to prove their pain from scratch with every new provider.
We are building coordinated care that believes your pain and remembers your story.

Sources: Shallcross et al., 2018; Reed et al., 2013.

#vulvodynia #womenshealth #chronicpain #genderhealthgap by @heraccess.eu

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3 months ago

This is a big moment for HerAccess.

Vulvodynia and other pelvic pain conditions remain deeply underserved. Too many women still face years of fragmented care, dismissal, and uncertainty before finding the right support.

HerAccess is building digital clinical infrastructure to change that — combining structured screening, clinician-led care pathways, holistic support, and learning systems that can improve care over time.

Being selected for Innofounder gives us the opportunity to take the next step: moving from vision to full on execution.

Thank you to everyone who has supported, advised, challenged, encouraged, and believed in HerAccess so far.

We are just getting started. ❤️‍🔥 by @heraccess.eu

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4 months ago

Women’s health was not simply overlooked.

It was shaped by centuries of medical assumptions about whose bodies mattered, whose symptoms were believed, and what counted as “real” clinical evidence.

For a long time, the male body was treated as the default in medicine. Women’s bodies were often framed as more hormonal, more reproductive, and more “difficult” to study.

That mattered.
It influenced what was researched. What was funded. What was taught. And what patients were expected to tolerate.

These assumptions also shaped the evidence base itself. In 1977, the FDA recommended excluding women of childbearing potential from early-stage drug trials — a policy intended to protect against fetal harm, but one that contributed to major gaps in knowledge about female bodies and treatment responses.

And although progress has been made, the effects are still visible today.

Especially in gynecological conditions like vulvodynia, where patients still face delayed diagnosis, fragmented care, limited specialist training and years of being told their pain is “normal,” “psychological” or something they simply have to live with.

This is why awareness alone is not enough.

Women’s health needs better infrastructure:
Structured screening. Clinician training. Clear care pathways. Specialist-led treatment. And systems that take women’s pain seriously from the beginning.

That is why we are building HerAccess.

Sources: NIH Office of Research on Women’s Health; NIH Revitalization Act; Harlow et al.; Reed et al.

#WomensHealth #Vulvodynia #GenderPainGap #WomensHealthInnovation #HealthEquity by @heraccess.eu

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4 months ago

Chronic vulvar pain is not “just pain.”

For many women, it becomes an invisible emotional load.
Anxiety around intimacy. Sadness after another dismissed appointment. Fear of disappointing a partner. Avoiding situations you used to enjoy. 
And the quiet thought: “Am I becoming too much for the people I love?”

Research shows that chronic pain and mental health are deeply connected. A large 2025 systematic review found that around 4 in 10 adults with chronic pain experience clinically significant symptoms of anxiety or depression.

But this is where care too often gets it wrong.

When women with vulvar pain also experience anxiety or depression, those symptoms can be misunderstood as the root cause of the pain.
For many women, the reality is different: the emotional distress is part of the impact of living with pain that is dismissed, unresolved, misunderstood or poorly treated.

The pain is not “in your head.” But living with pain can affect your mental health.
And needing support does not make you a burden.

Pain changes what you need. It does not change your worth.

At HerAccess, we believe vulvar pain care needs to be more than fragmented appointments and isolated treatments.
It needs to be clinical. It needs to be structured. And it needs to recognize the whole person behind the symptoms — including the emotional, relational and psychosexual impact of living with pain.

Sources: – Aaron et al. 2025. “Prevalence of Depression and Anxiety Among Adults With Chronic Pain: A Systematic Review and Meta-Analysis.” – Tribó et al. 2020. “Pain, Anxiety, Depression, and Quality of Life in Patients with Vulvodynia.” – Kowal et al. 2012. “Self-perceived burden in chronic pain: relevance, prevalence, and predictors.” by @heraccess.eu

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4 months ago

Introducing the team 🤍

HerAccess is built on a simple but consequential idea: that specialist-level care for vulvar pain should not depend on whether you are lucky and resourced enough to find the right clinician. The knowledge exists. What has been missing is the infrastructure to make it accessible.

Our clinical pathway is grounded in the treatment algorithm developed by Dr. Andrew Goldstein at the
@the.cvvd in New York — delivered by a multidisciplinary team spanning gynaecology, pelvic floor physiotherapy, osteopathy, sexology, and somatic movement.

▪️ Stefanie Jolak, Founder — Public health professional and patient advocate, market access background. Now building HerAccess to close the access gap she lived firsthand.

▪️ Dr. Marie Abel, Clinical Educator — Nordic vulvar pain specialist leading clinical education within HerAccess.

▪️ Dr. Andrew Goldstein, Expert Reviewer — Director of CVVD, New York. His algorithm is the clinical backbone of HerAccess.

▪️ Dr. Mie-Louise Larsen, Gynecologist. Clinical lead and prescriber within the HerAccess pilot study, with specialist expertise in hormonal conditions.

▪️ Deborah Tassi, Pelvic Floor Osteopath — Specialist in pelvic health and its integration with the rest of the human body, responsible for musculoskeletal screening and assessment.

▪️ Anna Smitt, Pelvic Floor Physiotherapist — Specialist in pelvic health, contributing structured assessment alongside Deborah within the pathway.

▪️ Johanne Kallmeyer, Clinical Sexologist — Providing opt-in psychosexual support, addressing the relational and psychological dimensions of vulvar pain.

▪️ Leah Wrobel, Somatic Movement Instructor — Specialist in pelvic health, contributing complementary body awareness and gentle movement content to support participants alongside clinical treatment.

Every role in this team exists because vulvar pain is not a single problem with a single solution.

The pilot study waitlist is open. If you have been living with vulvar pain and looking for a structured path forward — this is what we have been building for you.

Link in bio. by @heraccess.eu

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5 months ago

“Women’s health is good business.”

Access to care requires sustainable infrastructure, and sustainable infrastructure requires investment. The economic argument matters.

But it is not the whole argument.

The economic burden of vulvodynia has existed for decades — largely undocumented, largely unfunded, and largely invisible to the systems that should have been responding to it. Not because the condition was rare. Not because the suffering was unclear to the women living with it. But because chronic pain in women was not treated as a priority.

The result is a self-reinforcing cycle. Without research, evidence doesn’t accumulate. Without evidence, investment doesn’t follow. Without investment, care doesn’t improve. And the women carrying the burden are told there is nothing more to be done.

In the US alone, the annual economic cost of vulvodynia is estimated at $31–72 billion. Per patient, costs over six months average $8,800 — driven not by effective treatment, but by repeated consultations, ineffective interventions, and lost productivity.

Vulvodynia can be severe enough to force women out of work, out of relationships, and out of daily functioning. And yet around half never seek medical care — because the barriers are high, the stigma is real, and the system has rarely offered anything that works.

That is not a market failure. It is a structural one — built over decades of deprioritisation.

Women’s health is good business. Yes — and it always was. The realisation just came decades too late for the women who needed it.

Behind every data point is a woman who deserves better.

That’s the gap we’re building HerAccess to close.

#vulvodynia #womenshealth #chronicpain #femtech #healthequity by @heraccess.eu

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6 months ago

Vulvodynia is not one condition. It is several — with different presentations, different mechanisms, and different treatment needs.

Most women who live with it know this instinctively. They know their pain doesn’t fit the single story they’ve been given.

What they often don’t know is that the clinical system hasn’t caught up either — guidelines, research, and care pathways are built almost exclusively around one presentation, leaving everyone else without a roadmap.

If you recognise yourself in any of these slides — provoked, spontaneous, or mixed — your experience is valid, your pain has a biological basis, and you deserve a care pathway that reflects it. by @heraccess.eu

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6 months ago

Quality of life in medicine is measured using standardised tools that convert health states into a single number — where 1 is perfect health and 0 is death. It is a bit arbitrary, but that’s how it’s done — and one of the benefits is that we can compare quality of life across different diseases.

In a U.S. economic burden study, the mean quality-of-life score for women living with vulvodynia was 0.74. Patients with type 2 diabetes, without complications, score between 0.78 and 0.81.

By that measure, chronic vulvar pain impairs quality of life more than one of the most resourced chronic conditions in modern healthcare — one with dedicated clinics, reimbursed treatments, national screening programmes, and decades of investment.

Vulvodynia has none of that. It has diagnostic delays averaging years, a label that describes location rather than cause, and around 50% of patients who never seek care because the system has already failed them.
The burden is not invisible because it is rare. It is invisible because it has been deprioritised.

It’s our mission to change that. by @heraccess.eu

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6 months ago