Article
I spoke with 20 people about their vaginal pain. Here’s what I learned.
Norma founder Gráinne Byrne unpacks key insights from 20 intimate conversations.
Author
Gráinne Byrne
#1
When there’s no clear path to rehabilitation, people turn on themselves.
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Contained in the above image are just some of the responses I received when I asked participants to describe how the condition made them feel about themselves.
It’s clear that when people encounter barriers to proper information and care, they eventually come to believe that they are the problem.
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All research participants expressed that their difficulties in seeking help had negatively impacted their mental health, and caused them to perceive themselves as ‘abnormal’.
#2
Existing approaches to treatment can be patronising and exclusionary.
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Many people commented on how current resources for vaginal pain are solely directed at women in long-term, hetero-normative relationships.
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This traditional approach to rehabilitation can be problematic for several reasons.
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Firstly, there’s the implication that a partner’s support is required to alleviate the condition. This underlying message can be damaging to self-esteem and deter people from making efforts to self-rehabilitate.
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Secondly, existing information doesn’t prompt people to consider what a successful rehabilitation looks like for them. This is due to the deep-rooted societal implication that PIV (penis-in-vagina) penetration is the ultimate goal for everyone, and also the ‘only proper way’ to have sex.
Background image by Alex Motoc on Unsplash
#2
Social media is sadly one of the only places sufferers can get real validation.
L to R, TikTok Influencers raising awareness: @Shilermahm, @nurulbilad, @azia_mery
When speaking to a medical professional about their difficulties all participants reported negative experiences, such as:
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Watching the clinician becoming visibly uncomfortable
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Having their concerns brushed off as ‘normal’ without much probing
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Being told they’re not ‘bad enough’ to be referred to a specialist
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Even when people are directed to the specialist care they require, they can languish on public health waiting lists for more than 12 months.
The fear of not being taken seriously by their peer group or family, garnering unwanted pity or strange looks seemed to be overriding factors in people’s decision not to open up about their experiences.
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This is likely why social media accounts run by clinical specialists and former sufferers are a key point of reference for these people. TikTok and Instagram influencers were the most trusted sources for general advice and rehabilitation tips, particularly for the 18–25-year-old cohort.
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On one hand, all participants mentioned that reading about other people’s experiences on platforms like Reddit helped them to feel less alone. However, many also emphasised how these stories can be both ‘overwhelming’ and ‘depressing’, prompting them to catastrophise their own situation.
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Background image by Muhammad Ruqi Yaddin on Unsplash
The following are screenshots of recent posts on the subreddit r/vaginismus, which has over 23,000 members:
Background image by Victoria Health on Unsplash
What are vaginal pain conditions?
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The two most common vaginal pain conditions are vaginismus and dyspareunia. They are psychosexual in nature and can develop at any age.
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They are both characterised by the involuntary contraction of the pelvic floor when vaginal entry is attempted. This response is essentially the body’s natural defence mechanism to real or anticipated pain, but in overdrive.
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This muscle spasm is totally unconscious and cannot be willingly controlled, even when the person reports feeling relaxed and safe.
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Other vagina pain conditions include vulvodynia and vestibulodynia.
How prevalent are they?
Official prevalence rates are difficult to determine due to a number of factors, according to Dr. Maria McEvoy, research psychologist and lecturer at South East Technological University (S.E.T.U).
One study from 2017 reported that almost one in 10 women in the UK experience pain upon vaginal penetration. However, my conversations with various GPs, gynaecologists, pelvic health physiotherapists and sex therapists across the UK and Ireland have led me to believe that the number is likely to be closer to 1 in 5 women.
McEvoy recently published the first study on vaginismus in Ireland for 40 years. Her work has highlighted the fact that people who have not sought help for vaginismus are excluded in research studies and therefore don’t inform prevalence rates.
My research has lead me to believe that this type of condition is as or more common than erectile dysfunction in Ireland.
Why was this research undertaken and what’s next?
For a long time I had known that for some people with vaginas, seemingly ‘straightforward’ or ‘natural’ actions were simply a no-go.
I knew, because I was one of them.
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I had chronic primary vaginismus for three years.
Like many of these people, inserting a tampon, undergoing a routine intimate medical exam or being able to enjoy penetrative sex was impossible for me to experience without pain and distress.
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I want for there to be an easy and more affordable way to gain access to psychosexual health expertise, which is why I’m developing Norma, a platform with this very goal in mind.
Gráinne Byrne, Founder of Norma
*In this article, names have been changed in order to protect the identity of research participants.