Last year the federal government announced  the first National Action Plan for Endometriosis, which will aim to improve the treatment, understanding and awareness of the little-known disease.

But as Dana McCauley reports today,  a review of health funding on behalf of the federal government risks  pushing up the already high costs of vital treatment. The Medicare Benefits Schedule review is examining more than 5700 item numbers across the health system, including in gynaecology.

Experts say the changes it recommends would drive up out-of-pocket costs for endometriosis surgery. They say the condition is already expensive and difficult to treat. Women could pay as much as $400 more for each procedure, warns Dr Stephen Lane, president of the National Association of Specialist Obstetricians and Gynaecologists.

Health Minister Greg Hunt has made no firm commitment on whether he will adopt the recommendations.

Endometriosis is a condition where tissue that normally lines the womb grows outside the uterus, causing inflammation and debilitating pain. It usually grows in the pelvic cavity, affecting the ovaries, bowel and bladder, but can spread to the chest. Symptoms include nausea, painful periods and reduced fertility.

In one sufferer's words: "Some days it's like an intense period pain, but when it's bad, it's like someone's wrapped up all my abdominal organs in barbed wire and [are] pulling on it tightly. It's a very stabbing, horrible pain."

Laparoscopy, a type of keyhole surgery, is used to diagnose and treat endometriosis. Patients may choose to have surgery or undergo hormonal therapy. But there is no known cure. And in contrast to diseases such as breast cancer, endometriosis has a poor public profile. Research has been inadequate, and doctors struggle to identify it. Hundreds of thousands of women suffer in silence, and governments have been slow to act.

"On behalf of all of those in Parliament and all of those who have been responsible for our medical system, I apologise," Mr Hunt said in 2017. It would be unfortunate that he or a future health minister would need to apologise again to sufferers of such a serious condition after their government gave with one hand yet took with another.

While not without its faults, Australia's public health system is a world leader. Part of its general success is that the government entrusts experts with the task of  determining the efficacy of procedures and medications, promoting some while adjusting the costs of others. By holding down costs to the public purse, the system serves the nation well but in in some difficult cases it can let down sufferers.

Many women don't find it easy to talk about their reproductive symptoms and may be told to just "get on with it". So they've learnt to shut up and get on with life. But there should only be a case for increasing the funding available for sufferers of this dreadful condition.

Launching the project last July, Mr Hunt wrote: ''It is my hope that the National Action Plan for Endometriosis will serve to improve the quality of life for Australian women with endometriosis now and into the future; and that gradually, patients will no longer be defined by the condition they live with, but will be able to live full lives, with the uncompromised support of those responsible for their care.''

Mr Hunt, and those who succeed him, must make good on this pledge.