Thirty-one-year-old women who have not yet had the opportunity to have a family of their own should not have to make a decision to have a hysterectomy. Yet Lena Dunham, who has had a major surgery almost every second year of her adult life, felt compelled to do so. Women and girls with endometriosis may have severe disease and for many this seems like the only option. However, there are a number of issues around this situation that need clarification.

Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus. This often means that the uterus itself is a normal and healthy organ and in fact, removing that normal and healthy organ may have little impact on a woman’s pain if the other pelvic disease is not also removed. Now there are situations where the uterus may be affected by a similar disease process called adenomyosis, and this condition may be improved by hysterectomy, or alternative and conservative treatments including hormones.

Dunham reports having had more than 10 surgeries already and the question must be asked – is that too many? If she has rapidly recurrent pain and symptoms, then repeated surgeries will increase the risk but not necessarily the response and there is good evidence that increasing the number of painful stimuli episodes such as surgery may actually increase pain. For some endometriosis sufferers undergoing surgery, there is limited or even no response and if there is recurrence of pain symptoms within a few months or even a year, then repeat surgery is probably not going to provide a better outcome for them.

Furthermore, it is absolutely essential that women are not booked in for “check-up” or “clean-up” surgeries at a scheduled time to have a look for endometriosis “just in case” if they have few or no symptoms. This practice increases risk to the women from multiple procedures without providing appropriately balanced benefit. This practice not only increases the chances of complications from the surgery itself but also decreases fertility – which is already an issue for one in three women with endometriosis.

Genetics play a major role in the development of endometriosis. World-leading work from Australian endometriosis research collaborations have determined a number of genes involved in the development of disease and this may provide the basis for future early detection and management. This also means that endometriosis is not just a single disease process, but a group of related problems that appear in many forms. For the unfortunate Dunham, it is very likely she has had a very aggressive form of endometriosis – a group that I refer to as “rapid re-growers”, not very technical I know, but oh so descriptive. For these women, all manner of medical, surgical and other interventions fail to help their pain, fertility issues and suffering. And we must understand more about how we can help.

Dunham also noted that she had a septum in her uterus (her “heart-shaped uterus”). This is a developmental abnormality and these problems occur in about 1 in 200 women – for Dunham a double whammy since these problems are also often associated with endometriosis.

Women with endometriosis have suffered for far too long and advocates like Lena Dunham have helped put the disease on the map. But it is imperative to note that the extreme measure of hysterectomy means an end to a woman’s ability to carry her own baby and may not end her pain and suffering.

Endometriosis is a common condition affecting between 7% and 10% of Australian women, meaning that more than 580,000 Australians aged 10-55 are likely to be affected. It is rare before periods start and symptoms nearly always subside after menopause with two-thirds of women reporting they have symptoms before the age of 20.

Sadly, more than 60% of women are told that their symptoms are normal and they have no problem, which is why it may take 7-10 years to be diagnosed. This problem of awareness must be addressed with better education of not only girls and boys (it is very important that we address the education of boys too), but also primary care providers and the specialist medical community. The burden of this illness on girls and women, their families and the community is great. Financially, it costs an estimated $6bn dollars each year, with the emotional toll of chronic pain and or infertility often enormous, and sadly at times may lead to suicidal thoughts and tragically, even actions.

In late 2017, progress was finally being made on endometriosis with the formation of the Australian Coalition for Endometriosis – a group of patient advocacy, support and educational groups who lobbied for more action from the government.

Greg Hunt, the minister for health, delivered both an apology to women and endorsed a meeting to propose a national action plan on endometriosis. This brings together patients, educators, researchers, clinicians and a bipartisan group of politicians to work on addressing the serious health, emotional and economic issue that is endometriosis.

Lena Dunham’s endometriosis journey is not yet done, but we can do more to make sure that the young girls and women of today and the future have a clearer, brighter, less painful path to tread from hers and the millions of other endometriosis sufferers wake.