"IT stops me from doing my everyday life things. It leaves me too scared to have sex because of the pain I'm going to end up in," says Melbourne woman, Felicity.
And the 21-year-old is not alone.
According to a recent edition of Australian Family Physician, up to 40 per cent of adults report sexual difficulties to their GP.
Of the women who do go to their doctor with sexual health concerns, painful intercourse affects one in 10, lack of libido four in 10 and inability to experience orgasm one in three women. Painful sex has the highly unsexy title "dyspareunia" and women don't need to be able to pronounce it to seek treatment.
Dr Lenore Ellett, gynaecologist at the Mercy Hospital for Women in Victoria, emphasises that there is treatment for chronic pelvic pain or dysfunction available, even if progress can take months.
"I try to treat women holistically - brain, pelvic organs, pelvic muscles. Women with many years of chronic pain may benefit from medications that act on the central nervous system," she said.
"I then move down the body - bowel function is important so we work on diet. I then move to the pelvic organs and I recommend suppressing menstruation with whatever works. Finally I assess the pelvic floor.
"Pelvic floor overactivity can often be addressed with a good female physio who can teach the woman how to activate and deactivate the pelvic floor muscles. I warn my patients that this takes time and can be embarrassing - the muscles are in the vagina and they need to be touched to be taught how to work them efficiently."
A new treatment is also being trialled - the use of Botox in chronic pelvic pain is underway at Epworth and Mercy Hospitals in Melbourne.
"Occasionally, when physio doesn't achieve the goals of the patient, injecting Botox into the pelvic floor muscles to make them relax can be very effective. Unfortunately Botox is not on PBS (Pharmaceutical Benefits Scheme) so there is no funding for this treatment."
"I've had a couple who couldn't have intercourse at all who are now having satisfying sex and have achieved a pregnancy."
Melbourne women, Michelle and Felicity have battled chronic pelvic floor dysfunction and painful sex and are seeking treatment. Here they tell their stories.
My pelvic pain story is pretty long (it's been going for over a decade now) and complicated.
I have a malformed uterus and PCOS [polycystic ovarian syndrome], with abnormal bleeding so if I don't take a drug to control it I have my period most days of the year and really severe pain. I have vaginismus [involuntary contractions of the vaginal muscles which make penetration impossible or painful].
I was around 16 when I got my first period, but it was abnormally heavy and painful to the point I was bedridden and I needed pills to stop it.
I had no real way to measure what was 'normal' at the time. I remember being really confused about how girls at school could get their periods and not realise until they had soaked through their dresses, because for me the intense pain started days before and radiated all the way down my legs into my feet.
A similar kind of thing happened when I tried to have sex with my first boyfriend. It was so painful it would bring tears to my eyes and we would have to stop because it just wasn't going to happen.
But I kept trying because I had heard that 'the first time is meant to hurt' and I thought I just had to push through it. After a few months of sporadic attempts that didn't work, I went to a doctor and eventually they sent me to a gynaecologist.
She performed a hymenectomy and tried to widen the entrance a bit (I've since been told this is considered an outdated procedure).
About three months after that I actually managed penetration without coming up against 'the wall' of vaginismus. It was still pretty painful though.
I was about 17-18 by that point, and over the years the pain gradually increased instead of getting better.
I was sent by my GP to an endometriosis specialist who removed the endo I had but the pain was still there.
For a couple of years we cycled through every different type of pill to try to find one to regulate the pain and bleeding, but anything with estrogen gave me migraines and anything without it didn't do anything for the pain or bleeding.
It got to the point where the pain was so severe I couldn't really function without taking pain killers most days.
I was getting pretty desperate so I asked my gynaecologist at the time for a hysterectomy. But he wanted to get a second opinion so he sent me to Dr Lenore Ellett.
She put me on [a drug] to stop menstruation and a muscle relaxant to reduce the unnecessary contractions of the pelvic floor muscles.
After that, I wasn't in pain everyday anymore and went cold turkey off the painkillers. However, whenever I got a breakthrough bleed the pelvic pain came back, and if I tried to have sex I still had vaginismus.
Luckily my partner is supportive and isn't too worried about penetrative sex. Despite his support I was still super insecure about 'being abnormal' as I guess we are conditioned to think penetration is the only 'proper sex' (I only admitted that I couldn't do it to my best friend two years ago).
I agreed to take part in the Botox trial because I'm really willing to try anything that might help.
The procedure went very well for me, although I've heard not everyone got the same results. It stopped the vaginismus so I could work with the dilators to retrain the muscles, and I've had a lot less pelvic pain.
I even had penetrative sex twice, although we're still being careful so that we don't accidentally negate the process by rushing and causing pain.
I'd definitely consider having another round of the Botox to see if it helps even more.
For years when I was little I'd go from doctor to doctor, gyno to gyno, to be tested for everything and no one could figure out what was wrong.
So far, I've had three laproscopys for my endometriosis. I was told last year that I had stage three endometriosis. About two years ago, I found out I have polycystic ovarian syndrome (PCOS) as well and also adenomyosis (a condition in which the inner lining of the uterus breaks through the muscle wall of the uterus causing cramps, bloating and pain).
I suffer pain day in, day out with my endo. I have a lot of photos where I looked almost nine months pregnant. Every day is different and I always go to sleep wondering what I'll wake up looking and feeling like.
I have been on every pill possible. I got my first period at 7-years-old but most of my life, I've probably had my period more than I haven't. I was around 13-14-years-old when we realised my period went on and on for months.
I'm 21 and endo has changed my life forever. It stops me from doing my everyday life things. It leaves me too scared to have sex because of the pain I'm going to end up in after or during intercourse. I also bleed every time I have intercourse which makes my life so much harder. Usually, after sex is the worst. I have bad cramps and can barely stand up! Then, I bleed almost straight away, which can be quite embarrassing.
I don't have a partner but I usually sleep with the same guy for months and months. They understand my disease and circumstances and are really good about it. They understand what can happen during and after. They're quite caring and just make sure I'm OK. Still, it's hard to tell new sexual partners about my condition and how it can affect me. I only found out about the Botox trial two weeks ago and am still considering if I'll try to be in the trial.
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