Jillian Currie is speaking out about the condition that has left medical experts baffled. She is speaking candidly of her fear that she will never have a successful love life, as she tears “as if she has given birth" every time she makes love.
Battling a string of gynecological conditions since she was 16, Currie, says she hasn't been able to figure out the cause of her painful condition.
Now, she is bravely speaking out as she continues to battle for a diagnosis, to help banish taboos surrounding vaginal conditions and let other women with issues know they are not alone.
"For the past six years, my sex life has been virtually non-existent," she said.
“There's a stereotype that women have a lower sex drive than men, but that isn't always the case. I've wanted to do it, but not been able to – then I end up feeling frustrated that I can't satisfy the other person," she continued.
“I can't help feeling like there is a difference in the way men and women's bodies are treated in medicine. Woman are expected to just suffer in silence, and a lot of the time, we aren't even properly taught about our own bodies. It's so hard not to lose faith, but I really want to encourage others out there to be persistent and keep pushing for an answer. You know your own body, so trust in yourself."
Currie shares her story on her blog, Queens of Eve, which aims to teach other women about their bodies.
One of the first symptoms was a side effect of a contraceptive implant. She found it caused irregular bleeding, which did not settle as her body got used to the surge of hormones. She was first placed on a version of the Pill to combat it, but the surge of hormones heightened her anxiety.
Eventually, in 2011, doctors took her off contraception. But, in 2014 her skin began to mysteriously tear on her perineum every time she had sex, leaving her in agony.
“I'd be left with a deep cut, right where women usually tear when they give birth," she said. “It was every time I'd have sex and often it would be so painful that I'd have to stop."
“I was in a relationship at the time, but it obviously had an impact as, not only was I not able to be intimate as much as I'd like, but I also lost all my confidence."
Another side effect was her discharge.
“I felt disgusting. I didn't want anyone to touch me, so I basically stopped having sex. I know different bodies produce different amounts, but this wasn't my normal," Currie continued.
“I know my own body and knew something had changed, but every time I went to the doctor, I was told it was probably simple like thrush or bacterial vaginosis – another common gynecological condition – and was given medication."
With prescribed tablets doing little to ease her symptoms, Currie lost her patience. After a pap smear they ruled out cervical cancer, but was diagnosed with ectropion. Where cells from inside the cervical canal are present outside it instead.
In June 2018, she underwent cryotherapy and hoped her nightmare was ending but, five months later, her symptoms returned.
“This time, I at least knew what to look for, so I went straight back to the gynecologist, who found two more ectropions," she explained.
“In November 2018 I had a LEEP procedure, where an electrical wire loop scrapes and burns off the cells, while I was sedated, and, thankfully, that side of things seems to have been under control since."
On her doctor's advice, Currie also came off the contraceptive Pill, but medics have not solved the problem of her skin ripping every time she has sex.
Now it has become so sensitive that she battles pain most days, sometimes struggling to use tampons and being unable to wear certain styles of underwear, because it irritates her fragile skin.
“It's been six years of absolute hell," she said. “I must have seen around 20 different gynecologists, as well as lots of other doctors like dermatologists, sexual health and allergy specialists."
“At one point, I was even told it might be psychological – but, while I understand that there may be an element of anxiety, I don't think it's the whole story. It wouldn't explain why my skin physically tears."
“I've had allergy tests in case it was a reaction to something like an ingredient in my sanitary products, countless scans and even a vulval biopsy – but nothing provided any answers," she said.
“It got to the point where all I wanted was a diagnosis. Even if it was something bad, at least then I would know what I was dealing with and what my treatment options were."
In early 2019, by which time she had lost hope of finding an answer, she saw a glimmer of light, thanks to a specific steroid cream.
“I'd found one steroid cream that sort of worked, if I used it days and days in advance of having sex," Currie said.
“But then I figured I couldn't live that way. For one thing, it would take any spontaneity out of having sex, but I also didn't want to be using steroid creams long term on such a sensitive area. Plus, although it improved things, I was still tearing so it hadn't completely resolved it."
So, she went to see a sexual health expert who referred her to a specialist at Stoke Mandeville Hospital in Aylesbury, who had treated similar conditions.
At her appointment in December 2019, she was finally given a diagnosis of vulvodynia – a chronic pain condition which affects the vagina.
“My body is almost associating touch with pain," she explained.
Vaginal atrophy, where the vaginal walls thin or inflame, sometimes as a result of a lack of estrogen, has been suggested as a cause.
And she is now taking a course of hormonal treatment and has to wait and see if it is effective.
“The vulvodynia diagnosis is a definite, but the atrophy is still a maybe," she said. “I just have to keep going with the treatment and see what happens."
Currently single, Jillian still has the unenviable task of telling men she has a chemistry with that she will struggle to be intimate with them before things progress. So far, everyone has been understanding, but her situation has battered her self-esteem and affected her mental health.
And she is fearful that, if her condition cannot be treated, she will never be able to have sex again.
“I have been in a couple of relationships while going through this, as well as periods of being single, but I would say my sex life for the past six years has been more or less non-existent," she said.
“Knowing what I'm missing out on has had an impact on my confidence and mental health."
“Now, I almost panic if I'm talking to guy and it starts to get flirty, because I know at some point I will have to tell him that I cannot have sex as easily as other people can. Wondering when and how to bring it up is a challenge," she said.
“Luckily, nobody has been nasty, and I suppose if they were, that's not somebody I would want around."
Currie is trying to stay positive – throwing herself into Queens of Eve, where she receives daily messages from women all over the world just like her. By being so candid, she hopes to reassure others that they should not be embarrassed about their bodies.
“Through Queens of Eve, I try my best to be there for other women. It can be so difficult to find an answer for some gynaecological problems," she said.
“I'm happy to share my story because I want to help other women – my Instagram page is like a help hub – where women who have gynaecological issues can speak to fellow suffers and learnt that whatever they're going through isn't a taboo."
“A lot of the help out there seems to be geared towards older women, focusing on things like menopause and childbirth, or we're simply given some drugs, or a form of contraception that can cause all sorts of other issues and told to get on with it," she said.
“The underlying issue is that women aren't properly taught about their own bodies. I've been on a wild goose chase for a decade now, and had no idea half of these conditions existed. I understand that women can have insecurities, or feel a little uncomfortable going to the doctors about certain things, but there is no such thing as a normal body, and I really want to help break that taboo."
“Now, I want to put myself out there to show how many women are suffering like me," Currie concluded.
“If I'd had read a story like mine a few years ago, I'd have felt far less alone."
To find out more visit her Instagram page: @queensofeve