Endometriosis Is Often Ignored But There’s A New Hope For Long-Term Sufferers

New research suggests there may be hope on the horizon for people who suffer with long-term endometriosis pain, with studies indicating that a prostate cancer drug may soon be used to treat the disease.

A study published in The Lancet has shown that a drug cocktail approved for the treatment of prostate cancer can "significantly improve" moderate to severe pain associated with endometriosis, meaning the drug may soon be in the hands of patients who live with a disease that is currently woefully under-treated and under-researched.

The study found that a combined drug therapy including relugolix – which is currently approved for the treatment of prostate cancer and uterine fibroids – can help endometriosis patients to manage their long-term pain. 

This news is game-changing. It could represent an enormous shift for the everyday lives of millions of people who live with endometriosis-associated disability and pain.

As I write this, I am recovering from my eighth endometriosis surgery in 12 years. Without good medical interventions, these operations have been my only option for pain management and disease control throughout my adulthood. If these drugs soon become available for patients like me, everything could change.

Endometriosis, which affects one in 10 British people with uteruses, is a disabling inflammatory condition whereby tissue that is similar to that which lines the uterus – called the endometrium – grows and spreads in other parts of the body. These endometrial-like cells cause inflammation and bleeding throughout the body, which in turn causes severe pain. 

There is no known cure. 

The only reliable way to diagnose endometriosis in the UK is through invasive laparoscopic surgery. Further surgery to remove the disease is the most common treatment. The procedure involves opening up the pelvis and excising all of the endometriosis.

Many patients, like myself, require repeat operations, with the surgery only providing temporary relief until the disease begins to grow back.

Build-up of the disease also causes fibrosis and endometriomas – small, tumour-like clusters of endometriosis – which can interfere with the functions of organs in the pelvis. The disease can cause organs to become adhered to one another, which can in turn require emergency surgery. A 30-year-old woman in the US named Aubrion Rogers died after an urgent endometriosis surgery earlier this year, after being refused treatment several times by medical professionals.

Endometriosis disability costs the UK £8.2 billion each year in healthcare costs and lost earnings. But despite the disease’s severe effects, it continues to be under-treated due to a lack of research. And it still takes up to a decade for a person in the UK to be diagnosed with endometriosis. 

Researchers increasingly suspect that repeat surgery may be making some forms of endometriosis pain worse as a result of the continued severing of nerves within the pelvis. So the hunt is on for a medical – rather than surgical – endometriosis treatment.

The new combined relugolix drug contains a gonadotropin-releasing hormone (GnRH) antagonist, which suppresses oestrogen production, as well as a steroid hormone and a synthetic form of progesterone. 

The study’s authors say that the drug, which was well tolerated by trial patients, could help to address an "unmet clinical need" in the long-term treatment of endometriosis pain.

The treatment "significantly improved endometriosis-associated pain", the authors said.

The drug is a variation on an existing treatment for endometriosis, known as GnRH analogue injections, but is more sophisticated as it combines the oestrogen-suppressing drug with other treatments and can be used long-term. GnRH injections can only be used by patients for a maximum of a few months, usually before or after surgery, due to the long-term side-effects.

Dr Lucky Saraswat, a consultant gynaecologist and minimal access surgeon at Aberdeen Royal Infirmary, told Refinery29 that the drug could be an "important addition to the group of medical treatments for endometriosis" and said she was pleased that the latest study has confirmed that the drug is "safe and effective".

Dr Saraswat explained that the new treatment will be beneficial for patients as it provides the same degree of pain relief as GnRH injections but has fewer side-effects and is easier for patients to use. 

"The drug is taken orally once a day, rather than injected, so it is easier and requires less healthcare resource utilisation," said Dr Saraswat. In order to get existing GnRH injections, patients are required to visit hospitals or nurses each time they need the treatment.

Dr Saraswat also explained that endometriosis researchers are increasingly focused on the potential for different types of drugs to treat endometriosis, some of which are also used for cancer treatments.

"In some ways, endometriosis, though benign, shares some characteristics with cancer," she explained. "For example, it can invade other organs and spread to different parts of the body in some people."

Dr Mauricio Abrao, president of the American Association of Gynecologic Laparoscopists and head of the endometriosis unit at the University of São Paulo, who co-authored the new study, told Refinery29 that there is hope that the new combination drug will soon be authorised to treat endometriosis. 

The use of the drug "for the management of moderate to severe pain associated with endometriosis is under review with the United States Food and Drug Administration," he said. A decision is due to be made in August.

"We need to focus on research that will change the reality of this disease," said Dr Abrao.

It is crucial for endometriosis patients to be offered a safe, long-term way to manage the pain associated with the disease. Diagnostic delays and insufficient treatment options have led many patients to rely on dangerous painkillers such as opioids.

Earlier this year, Laura Newell died in an Irish hospital as a result of using over-the-counter opioids to treat pain caused by her undiagnosed endometriosis. Newell’s use of medicines containing codeine over a period of time to relieve her pain caused damage to her bowel. The bowel damage required surgery and Newell died from surgical complications.

The new combination relugolix drug isn’t the only potential new treatment on the way for endometriosis patients.

Professor Andrew Horne, an honorary consultant gynaecologist at the University of Edinburgh and the co-director of the EXPPECT Centre for Pelvic Pain and Endometriosis, has recently found success trialling a drug called dichloroacetate, which has been trialled for use in cancer therapy as well as to treat rare metabolic conditions in children.

"Cells from the pelvic wall of women with peritoneal endometriosis have a different metabolism compared to women without disease," Dr Horne told Refinery29. "The cells produce higher amounts of lactate – similar to the behaviour of cancer cells – creating an environment that supports the development and growth of the endometriosis lesions."

When treated with dichloroacetate, Dr Horne said, the cells found in women with endometriosis returned to their normal metabolic behaviour. 

A small trial in which 30 endometriosis sufferers were treated with the drug found that the patients experienced "less painful symptoms and required fewer painkillers when they were taking dichloroacetate," said Dr Horne. He added that some women in the study described the drug as "life-changing".

"We are now seeking funding to test dichloroacetate in a bigger trial of 100 women with endometriosis and compare it to a placebo," Dr Horne added.

Dr Saraswat said that the future of endometriosis research also needs to look beyond a hormonal approach to treating the disease. 

"Endometriosis has historically been considered primarily an oestrogen-dependent condition," she explained, and as a result the primary medical treatments – including the new combined relugolix drug – focus on oestrogen suppression to treat the disease. But that’s not the full story.

"The disease is also an inflammatory condition," she said, explaining that researchers need to look at the immunological elements of the disease as well as the hormonal ones.

"We need to look at all the different elements of endometriosis and work out exactly how it originates," said Dr Saraswat. 

Dr Abrao agreed that the future of endometriosis research needs to solve the mystery of the autoimmune elements of the disease.

"There are many studies being done which show that there are immunological triggers for the disease," he explained. "And this angle might prove to be the best treatment."

Doctors and researchers are of course hoping to discover a cure one day. "We are all on a quest for the cure," said Dr Saraswat. 

But a lack of funding continues to slow down endometriosis research. 

Awareness and government funding has improved in recent years, Dr Saraswat said, but it is still not enough for researchers to tackle the many different aspects of endometriosis. 

The British government just published a women's health strategy which centres endometriosis. It promises more research into the condition.

Throughout human history, endometriosis sufferers have been under-diagnosed, under-treated and dismissed, compounding the devastating physical and psychological effects of a disabling disease. My own journey with endometriosis is testament to that. But I also know from speaking to experts and advocates that there is reason to be cautiously optimistic. If governments continue to take the condition seriously and inject funding into research, there are life-changing medical developments around the corner.