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'False hope': Hysterectomy treatment for endometriosis is no cure-all

From the age of 11, Erica Brown has suffered from debilitating abdominal pain.

"I would come home from school in tears and tell my mum, 'My tummy's hurting. What's wrong with me?'"

After years of doctors telling her parents that her pain was "normal" for a girl starting menstruation, or that she was "putting it on", it was not until she was 21 that a laparoscopy revealed she had endometriosis, a condition where the endometrium – or uterine lining – grows on the outside of the uterus, or elsewhere in the body.

According to Endometriosis Australia, Ms Brown's experience is not uncommon. The organisation estimates the average delay between experiencing symptoms of endometriosis and diagnosis is between seven and 10 years, mainly due to a lack of awareness of the condition.

For this reason, while one in 10 Australian women are believed to suffer from endometriosis, only a fraction of these cases are diagnosed.

However, endometriosis was thrust into the spotlight on Wednesday, when Girls actor and creator Lena Dunham revealed she had undergone a total hysterectomy – removal of the uterus and cervix – after years of battling the condition.


In a personal essay written for US Vogue, Dunham, 31, said she made the drastic decision after "years of complex surgeries".

But, for many endometriosis sufferers who undergo a hysterectomy to relieve symptoms, the results are disappointing.

Now 39, Ms Brown had a hysterectomy in April last year. She made the decision after enduring 13 other surgeries, including ovarian drilling.

Ms Brown said she was aware the procedure would not completely cure her pain: the single mother from Canberra – who had her son after 10 years of IVF treatment – suffers from endometriosis in many areas outside of her uterus, including her bowel and pelvis.

"For me, being a single parent, I needed to make a decision to improve the quality of my life," she said, noting that she knew the procedure would at least relieve her heavy bleeding.

Despite this, Ms Brown, who took a voluntary redundancy from her public service job three years ago after constantly being on sick leave, says her life post-surgery has been "hell".

Ms Brown's hysterectomy removed her uterus, cervix and left ovary (her right ovary had not been affected by the condition). The Zoladex injections she was prescribed to prevent oestrogen production and, subsequently, the production of the endometrium, failed to work and, by November, her remaining right ovary had moved position to adhere itself to her bowel, both organs now affected by endometriosis.

She has been hospitalised six times since the procedure, recently spending six nights in hospital on a ketamine infusion after her bowel began to wrap itself around her remaining ovary.

"It's not something that's going to resolve on its own," she says, adding that she expects to undergo more surgeries this year.

Dr Jason Abbott, an associate professor at the University of New South Wales and expert on the surgical treatment of endometriosis, says narratives that endometriosis is a condition of the uterus and can be cured by undergoing a hysterectomy ultimately give "false hope" to sufferers.

"In many cases with people with endometriosis, the uterus is quite innocent and it doesn't have to be removed at all," he said, warning that doctors can be too keen to prescribe hysterectomies in sufferers.

Dr Abbott said more than 90 per cent of endometriosis sufferers do not have the condition on their uterus.

"If these women have a hysterectomy, they would have no change in their symptoms and, of course, then also not be able to carry a baby."

However, there are a small number of endometriosis sufferers for which a hysterectomy does provide some relief, although this relief is rarely related to endometriosis itself.

In her Vogue essay, Dunham wrote, "In addition to endometrial disease, an odd hump-like protrusion and a septum running down the middle, I have retrograde bleeding, AKA my period running in reverse so that my stomach is full of blood."

Dr Abbott said it seemed likely it was these additional factors, and not Dunham's endometriosis, which resulted in a hysterectomy being prescribed.

For Kirsten Lynch, 42, it was the presence of endometrium in the muscle wall of her uterus – a condition known as adenomyosis – that resulted in her undergoing the procedure.

"I was influenced by [my] pain levels, very heavy periods and the fact that, at 40 years old, I didn't really need my uterus anymore," the mother-of-two from Hobart said.

Prior to her hysterectomy, Ms Lynch had an ectopic pregnancy in her late 20s, caused by endometriosis blocking her fallopian tube.

After falling pregnant with her first daughter in 2006 following IVF treatment, she conceived her second daughter naturally only to experience complications during her caesarean delivery.

"My uterus was stuck to the abdomen wall: it was not a pleasant birth experience," she said.

Although she says her pain returned three months after the procedure – Ms Lynch also has the condition on her ovaries, urethra and bowel – it is "nowhere near the levels it was before".

"The continuous tugging, pulling and heavy feeling I had [from a swollen uterus] has been removed and I no longer suffer for a week with heavy bleeding," she said.

However, Ms Lynch is conscious that endometriosis sufferers, particularly women who do not also suffer from adenomyosis, should not view her story as a justification for having a hysterectomy.

"There are side effects of a hysterectomy that need to be taken seriously. It is not a small decision."

Genetic factors account for roughly 50 per cent of a person's risk of developing endometriosis.

Last year, the world's largest study into the genetic causes of endometriosis was jointly led by the University of Queensland's Dr Grant Montgomery and QUT's Dr Dale Nyholt.

The study, which analysed data from over 200,000 participants, confirmed nine of the 11 previously known gene regions associated with the condition, as well as linking five additional regions.

In December the Turnbull government announced a National Action Plan for Endometriosis, including $160,000 in funding for Dr Montgomery's research.