Persistent pelvic pain: Women suffer in silence amid ignorance and stigma

Each time Kate Mokrzecki presented to doctors with pelvic pain, they put it down to a different condition — appendicitis, a liver infection, intestinal problems.

She was even tested for a heart condition.

“There wasn’t much help, really. After they did that test [for heart problems], they just left it there. When it came up negative, my mum assumed it was all OK,” she said.

The 18-year-old endured four years of debilitating abdominal pain before she was finally referred to a gynaecologist.

The gynaecologist booked her in for a laparoscopy — a diagnostic surgical procedure that shows the structures inside the pelvis.

Her doctor suspected the cause of her pain was endometriosis, a chronic condition where tissue similar to that found in the lining of the uterus is found outside the uterus.

However, it wasn’t endometriosis either.

“I started thinking I was going crazy,” Ms Mokrzecki said.

But she had not been imagining the pain. The laparoscopy indicated she had symptoms of adenomyosis, a chronic condition sometimes referred to as the ‘sister’ of endometriosis.

It causes cells that usually line the uterus to grow into the muscle walls.

Generations of women affected by pelvic pain have been ignored, misdiagnosed, or conditioned to think their pain was normal, but endometriosis is now receiving much more attention from the public, the medical profession and politicians.

The Federal Government recently released its draft action plan for endometriosis, and allocated $2.5 million for research into the illness, which affects about one in ten women.

However, doctors say other, equally debilitating, causes of persistent pelvic pain like adenomyosis are still being neglected.

‘Generations of doctors’ lack training

Persistent pelvic pain is characterised by pain in the region below the navel, but above the hip, and is estimated to affect 15-25 per cent of women.

Although Ms Mokrzecki’s adenomyosis was able to be picked up through a laparoscopy, many of the causes of persistent pelvic pain lack visible symptoms, making them mysterious for doctors trying to diagnose them.

Community understanding around conditions like endometriosis is improving, with celebrities like actress and author Lena Dunham and yellow Wiggle Emma Watkins speaking openly about their experiences.

Specialist pelvic floor physiotherapist Trish Neumann said although the recognition of endometriosis by the medical community and the public had been life-changing for many, other types of pelvic pain were largely still going undiagnosed.

“One of my concerns is that every pelvic pain we put down to endometriosis,” she said.

“We’re at this crossroads where it’s good to understand more about endometriosis, and have the public and have GPs knowing what to do with endometriosis, but we need for the education to extend beyond that.”

The pelvic cavity is a complex area of the body, home to many different systems and organs, so there are multiple possible causes of pain.

Combined with the complexity of the illnesses is a lack of training for medical professionals when it comes to diagnosis.

“There has been poor education in the medical profession. GPs haven’t necessarily been known to look for it or understand that there is something you can do about it,” Dr Neumann said.

She said medical professionals were only just beginning to better understand the problem.

“This change in understanding of pain is only just really hitting the medical schools, so there’s generations of doctors out there who may not have an understanding of chronic pain and how to manage it,” she said.

Diagnosis can also be delayed by the reluctance of women to seek help because they think the pain is normal.

Kit Richards, 25, suffers from vulvodynia — a muscle condition that is characterised by a burning pain in the vulval area.

It can make sex, and even inserting tampons, incredibly painful.

“Through every sexual experience I’ve had, it’s always hurt. Because there’s a little bit of a stigma, I thought it was normal,” she said.

Ms Richards spent a year seeking diagnosis from medical professionals, too shy to discuss her pain with even her mother.

“I was so ashamed. The only time I’d bring it up is when I needed to go to the doctor,” she said.

‘Light at the end of the tunnel’

Gynaecologist Susan Evans, who chairs the Pelvic Pain Foundation of Australia, said women often felt discouraged from speaking out due to a lack of empathy and understanding from the wider community.

“Unlike the support that is given to those with visually obvious pains, like a broken leg for example, most people have no shared experience of pelvic pain,” Dr Evans said.

She said society often had trouble comprehending pain that cannot be seen.

Hysteria, a medical diagnosis once given to women who were experiencing unexplained symptoms, was only discredited as a psychiatric disorder in 1980.

“Many of the people in our community have lived through these times and may subconsciously associate pain in the pelvis with a stigma,” Dr Evans said.

Ms Richards said her diagnosis was a turning point.

“When I first got diagnosed, I remember that conversation being so freeing,” she said.

“I thought, now we actually know what it is. I can actually see a physiotherapist, there’s some sort of light at the end of the tunnel.”

Dr Evans said the need for more research around persistent pelvic pain in women was obvious.

But with no measurable test for pain, and the wide range of different symptoms, it is difficult for pelvic pain to attract the money required for such research.

“There is no blood test that can detect whether pain is present, how severe it is, or whether the treatment recommended is working,” Dr Evans said.

For now, she said, educating the community on persistent pelvic pain and its causes was a good place to start.

“Everyone has a role in change. It starts with families, schools and health professionals taking period pain seriously,” Dr Evans said.