For 30 years, doctors have been telling Lily* that the excruciating pain she experiences during sex is all in her head.

It’s actually vaginismus, a common vulvovaginal disorders which causes involuntary vaginal muscle spasms. But after decades of poor experiences with healthcare providers she’s given up on finding treatment.

Lily isn’t alone; new research from the US revealed than one in two women seeking care for vulvovaginal disorders (including vaginismus) consider giving up due to poor experiences with healthcare professionals.

The study found that one in four patients felt belittled by medical professionals, one in five said they were not believed, and nearly two in five were made to “feel crazy”.

About 40 per cent said they had been told to “relax more” by a healthcare professional and 20 per cent claimed they were told to drink alcohol to manage their condition.

They’re lines Lily’s heard before right here in Australia.

“Usually they will say that there’s nothing wrong with you, this is basically in your head […] you just need to try to relax during sex,” she told 9news.

“I would go away with no major support, no referral to other professionals.”

Despite the constant setbacks, she kept seeking treatment until a recent gynecologist appointment with a killed the last shred of hope she’d been hanging onto.

After describing her pain to the female gynecologist, Lily was asked if her husband’s genitals were simply “too big” for her.

“I’ve had this problem for 30 years […] to just put it down to the size of my husband’s anatomy is so unprofessional,” she said.

“That gave me the feeling like I might as well just give up if I see an experienced female gynecologist and that’s her answer to the problem.”

The US study found that more than 52 per cent of participants gave up on seeking treatment as a result of poor experiences with medical professionals and Australian experts wouldn’t be surprised if the statistics were similar here.

Gynaecologist lead at Jean Hailes for Women’s Health Dr Pav Nanayakka has heard many reports of women feeling dismissed, shamed and invalidated when seeking care for vulvovaginal disorders.

She told 9news that it often leads to a loss of trust in the healthcare profession and patients avoiding care altogether.

“There are definitely educational gaps in medical training,” she said.

“Many providers have very little formal education about evolving vaginal disorders, especially the chronic or less common ones.”

Conversely, positive experiences made women more likely to continue seeking help and treatment even when faced with setbacks.

More broadly, two in three women reported they experienced health care related gender bias or discrimination, according to the 2024 #EndGenderBias Report.

Experiences of gender bias or discrimination were most common in relation to sexual or reproductive health care.

Nanayakka encouraged patients who have had poor experiences to seek medical professionals with a special interest in women’s health rather than giving up on treatment entirely.

“There can be some really, really important conditions that can be misdiagnosed and they can be potentially dangerous if they are missed,” she said.

But affording specialist appointments, especially when you’ve already paid to seek care before, can be difficult in a cost of living crisis.

Lily has forked out thousands on medical appointments over the years and can’t afford to keep up with the costs of seeking specialist care for her vaginismus.

“I would say at the moment, I feel like I’ve given up hope,” she said.

“I just wonder if it was a man who had extreme physical pain every time they had sex, would they be so easily dismissed?”

*Name changed for privacy.