Thousands of Kiwis are suffering in silence. Photo / 123rf
Thousands of New Zealand women are struggling with an illness many are scared to talk about. Katie Harris speaks to women about a condition which for some can make sex impossible.
It hadn't always been painful but, during a time when she craved "closeness" with her partner, sex became unbearable.
Each time Rosa and her partner tried to get intimate, she says it was like there were multiple paper cuts in places they should never be - nothing seemed to work.
"It's as if your mind shuts that part of you down and it can no longer function the way you'd like it to in that moment - like it's protecting you from an outside force."
At age 23 she was diagnosed with vaginismus, a health condition where the vagina tightens up suddenly when you try insert something into it.
Experts spoken to by the Herald on Sunday say research on the illness is sparse but it's estimated between 5 per cent and 17 per cent of women will experience the condition at some stage.
However, unfortunately for sufferers, it's barely discussed, meaning it can take years for many to even know penetrative sex shouldn't be painful.
While the symptoms came to a head in her early 20s, Rosa, who has asked not to be named, began to suspect she was different in her teens but she'd never had sex so didn't know her feelings weren't normal.
"I had a couple of friends that were quite open about that type of thing and my experience was a lot different. I just thought, 'Oh my gosh, is there something wrong with me?' And that thought sort of just continued on until last year when I think it was the worst, because it [the pain] was every time [I had sex]."
Back then, Rosa was trying to be "giving", and the low opinion she had about herself meant she believed it was shameful to talk about her body.
Because Rosa had never had persistent symptoms, she didn't understand that what was happening to her body wasn't usual and she was too nervous to ask her doctor for help.
This anxiety surrounding the illness led her into dark places and whenever she did experience the pain she would just "put up with it".
"I think also I was not confident enough to be able to say no to certain situations … For fear of disappointing people."
All that changed when, over lockdown and following an abortion, sex with her partner became horrendously painful.
This added to the mental load she was already dealing with following an abortion, which was performed without enough anaesthetic.
"I had massive issues with lying down on my back with ceiling lights in the room. This is because it triggered physical feelings of what I felt when I had the abortion ... And I was so emotional about the whole thing that I felt I couldn't say much."
Only through seeking help from her GP, with whom she has a close relationship, and therapy did Rosa come to know her physical illness was rooted in previous traumatic sexual assaults.
Sometimes she dreams about the first incident, her mind flashes back to being under a desk at her grandparents' house, and an overwhelming sense of shame.
She was only 3 or 4 when the incident, involving the partner of a close family member occurred but she still remembers the guilty feeling. However, she's unsure whether she'll ever fully know what happened.
By age 11 she was being abused again - and this time by her mother's then boyfriend - who she says sexually assaulted her for two years.
Rosa was an adult when she found the courage to share what happened to her but did manage to speak about it with a sibling during her teens.
But her trauma didn't stop there and at university she was assaulted again.
"I was blackout-drunk and I had put myself to bed at a friend's flat. I woke up with the person on top of me, he was having sex with me while I was almost unconscious.
"I woke up and didn't know what to do. But instead of pushing him off, I felt like I should just go along with it instead of making him feel bad."
Coming to terms with her body's reaction to what many people would see as a natural act has required a range of treatments - and largely she's dealt with it from the inside out.
"The physical pain obviously is a burden, but the toughest thing for me, bar that, has definitely been the things I've gone through mentally."
In an attempt to "rewire" her brain Rosa does Cognitive Behavioural Therapy (CBT), which she says helps her understand that she's in a safe place.
The talk-based therapy is a type of psychotherapeutic treatment that aims to change thinking order and behaviour by helping people understand their thoughts and think more positively about certain things.
"She [the therapist] would usually ask me to lie down and shine a light above me. We would then talk through the emotions I was feeling and I would have to speak them out loud."
Getting to the point where sex is enjoyable has still meant she's had to relive many of the things she fought so hard to forget.
"For a long time there, well last year anyway, especially during those initial days in quarantine, every time I lay on my back I would have flashbacks."
Having the diagnosis meant she's now more receptive to the struggles of others, and is more open and caring in her relationships than she has been in the past.
"I am not in a place of anger or sadness anymore."
The condition can present in two different ways - primary or secondary - and Rosa was diagnosed with the latter.
For those with primary vaginismus, full penetrative intercourse will seem physically impossible, despite repeated attempts.
On the other hand, secondary vaginismus is unexplained and ongoing sexual tightness, where there may have been a previous history of normal sex.
Besides therapy, Rosa also practises pelvic floor exercises and says the combination of both will be an ongoing thing.
As time goes on Rosa's learning how to acknowledge and accept herself and her body the way it is.
"I am more open to hearing and participating in open conversations around sex, it was once a very taboo topic for me - especially growing up. Bodily autonomy is a right, not an option ... We are not obligated out of fear of disappointing somebody else. Saying no to someone else is saying yes to yourself."
Healing has no finish line, says Rosa, but she wants to put in the hard work now for the betterment of her and her potential family's future.
"I don't want to project the hurt that I've felt on to other people in my life, realising that has been so positive."
She had no idea what vaginismus was before being diagnosed with it, but by sharing her experience, Rosa hopes others suffering may gain the confidence to seek help.
Sex Therapy New Zealand regional director and sex therapist Mary Hudson doesn't believe some clinicians in the medical profession fully understand the condition of vaginismus.
Hodson works alongside specialist physios, GPs and gynaecologists to help people with vaginismus overcome it and says most people who present with it aren't aware they have the condition.
"Unfortunately, people don't talk about sex generally in society, it takes people a long time to get to the help they need. We know that in the general population about 43 per cent of people have had quite serious sexual dysfunction."
Adding on more minor problems, Hodson says this number shoots up to 90 per cent and generally it takes people six or seven years to get the help they need.
"I think it [vaginismus] is inadvertently misunderstood, GPs might say, 'Just relax, you're tight, there's nothing actually wrong with you you're just uptight.' And that isn't helpful for people if they've got an involuntary muscle spasm, they can't control it."
Having said that, she says she knows a lot of GPs who are dedicated to doing a good job and will look further, but there isn't a vast amount of sexual medicine specialists in New Zealand.
"That's part of the problem with vaginismus, it gets muddled up with other kinds of female genital pain, and we see it in the latest statistical manual which is a guide for doctors, It's been lumped into a category called female genital pain which includes other types of pain."
Not only are sufferers dealing with sexual dysfunction, the condition has huge mental health effects for those with it and their relationships.
"It's a very traumatic thing to have wrong with you and when you try to engage sexually and you experience pain, if you do that a couple of times I think you kind of switch on the trauma response of the brain. So before long, just thinking about sex, your brain sort of goes, 'Oh no no, I can't go there that's going to hurt.'"
Vaginismus is sometimes triggered by sexual assault but not always, a lot of the time people just grow up with it.
But things are changing and Hodson says younger generations are a lot more comfortable talking about sex with each other, which means they're more likely to be able to get the help they need.
However, their older counterparts are more conservative when it comes to opening up about their intimate lives, with some feeling they have to have sex with their partner to maintain the relationship.
The longer the condition goes on untreated, the more that trauma response grows, meaning that after six or seven years there's a significant amount of psycho-sexual work that needs to be done.
On top of physical and mental therapy, there are surgical options for extreme cases, which involves cutting muscles. However, she says this can cause scarring and loss of sensation.
Hodson doesn't believe we talk enough about sex full stop, let alone sexual dysfunction.
"I just think in society we're not particularly good at talking about things that are wrong with our bodies, so things that go wrong with our bodies that are sexual aren't talked about in a healthy way."
Her main message for those who see themselves in these words is that pain during sex is a "warning light" and putting up with the hurt will make it worse.
"Nobody should be having sex if they don't really really want to. And nobody should be having sex at all if it hurts."
And help is out there.
"I'm like I'm sorry, your one opens?"
Once a year since she was 14, Gina would try use a tampon - what many women see as one of the final barriers to real adulthood.
But it never worked.
"I think because I wasn't having sex with anyone, I just thought, 'Oh I'll wear pads, I don't get what the big deal is.' It only occurred to me in my first year of university that something must be up."
Years since first trying to use a tampon - and halfway through her freshman year - Gina broached the topic with her GP - who'd seen people with similar symptoms - and was able to refer her on to a specialist physio.
From there the physio did an examination and diagnosed Gina on the spot, advising her to start using dilators.
The devices come in a series of sizes, like Russian dolls, for your vagina.
You start small, about the size of a tampon and work your way up to larger devices until they become comfortable.
"I'm really bad [at using it regularly], I don't like doing it, It's not fun and I will procrastinate because I don't have any motivation to."
Right now, she's at the point where she can now use tampons but believes that if she was in a consistent relationship with someone she would have the inspiration to train more.
"It's so annoying, it's bulls***, I want my money back, I feel so scammed. It boggles my mind that people can actually do this with their bodies when that's literally what vaginas are for. I'm like, 'I'm sorry, your one opens?'"
Wearing her condition like a badge of honour, and not one to keep quiet, she wrote about her story publicly online.
In the piece, she writes how the condition does not define a person and sex is for anyone who wants it - including people with vaginismus.
While she believed many of her peers were out having "penis in vagina" one-night-stands, after the story came out Gina says multiple women came up to her "drunk and in tears" at parties saying they didn't know they had the condition until her article.
"When you're publicising that you cannot do this really normal thing that you're supposed to do and that people will write you off because of it. Your mind spirals. I could be losing out on a really great relationship right now because I can't have sex with a person the way they want me to. It really sucks."
Now she doesn't feel like she needs to have "that conversation" with potential partners, because they'll likely already know.
Although she had no issues being named in her piece, because she shares intimate sexual details, the Herald has agreed not to reveal her name.
Despite her anxiety around being rejected due to her condition, she's only ever had positive feedback when she's disclosed her situation to others.
On one occasion she went home with someone, and says the man had assumed they were going the "full Monty", but when she explained her condition, she said he was completely fine with it.
"I have not had a single bad experience where I've told someone and they've not wanted to proceed. Which has been really cool."
Living with vaginismus can be hard at times, and because of hook-up culture, it sometimes can feel like people are "rubbing" their sex lives in her face but she's optimistic about having full penetrative intercourse in the future.
"That is what I want, the only thing stopping me from doing that is my sheer procrastination, like it's on the same playing field as the reason by I'm 20 years old and I don't know how to drive."
With the whole "dating thing", she's been inspired to put more time into herself in regards to her treatment, but vaginismus is more than "dating without sex".
Gina says this minimises the sheer gravity of the situation as it's effects stretch far beyond the bedroom walls.
Almost anyone who has had a vaginal speculum examination can tell you they're not a walk in the park, comfort-wise, but Gina worries that for her it's not even on the table.
"It's so painful for someone without vaginismus, there's no way if something goes wrong with my body down there that I can have someone crank me open. That then is a major health hazard."
Looking forward, she'd like society to widen its view on what sex looks like and believes it's incredibly limiting to think sex is "just penis-in-vagina missionary".
And she has a message to her future sexual partners.
"It took a lot of work, I would like them to know it took a lot of self-development, physical time, it took a lot to get to where I am. So please f***ing appreciate it."
The secret condition
• Vaginismus is a medical condition where the vagina tightens up suddenly when you try insert something into it, making sex and using tampons difficult.
• Between 5 per cent and 17 per cent of women will experience the condition at some stage.
• The condition can present in two ways:
- Primary: full penetrative intercourse will seem physically impossible, despite repeated attempts.
- Secondary: unexplained and ongoing sexual tightness, where there may have been a previous history of normal sex.
• It can be treated with physical and mental therapy as well as surgical options.
• Vaginismus is sometimes triggered by sexual assault. Often people just grow up with it.
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