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Living with my diagnosis since the age of 15

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The medical experts of All India Institute of Medical Sciences (AIIMS) Rishikesh have warned that ignoring the kidney stone pain can damage other parts of the body, which can be life threatening. They point out that one of the most commonly ignored ailments in people is renal stone disease (nephrolithiasis).

The Head, Department of Urology, Dr Ankur Mittal said that renal stones affect all ages from infancy to the elderly population and they are formed due to the super saturation of the urine with substances such as calcium, uric acid, cystine and oxalate. “In the initial phase these substances form crystals and around them there is further deposition and eventually a kidney stone is formed. Stones can either pass through the urinary passage and be extruded in the urine or lie asymptomatically in the kidney. It is when they get obstructed in any part of the kidney or urinary tract that symptoms develop,’’ he said.

The symptoms of renal stone disease include fluctuating and excruciating pain in the abdomen, groin and flank region that can lead to urinary tract infection with fever and chills, burning micturition and even passage of blood in urine. “An expert should be immediately contacted in case of excessive unbearable pain in the flank or in the groin,’’ the doctor suggested.

Dr Mittal said that one should drink more fluids to produce at least two litres of urine per day and various dietary modifications are advised in the form of a salt restricted diet, cutting back on the consumption of meat with avoidance of caffeinated drinks, nuts, foods that contain fructose corn syrup to combat the disease.

The Director of AIIMS Rishikesh Ravikant said that soon an ‘Advanced Urology Centre’ which is in its final stage of completion would start functioning in the institute. The centre would have a world class ‘Dornier lithotripsy machine’, and a radiology suite for urological interventions, he added.

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Acubalance Wellness Centre in Vancouver has the expertise and training to use Low Level Laser Therapy to treat everything from infertility to headaches

Laser therapy might sound like the stuff of science fiction, but it’s a clinically proven treatment that can help boost fertility, reduce inflammation, accelerate healing, relieve pain, and much more.

Acubalance Wellness Centre is a leader in Low Level Laser Therapy (LLLT), also known as photobiomodulation, for fertility. Founded by Lorne Brown—doctor of Traditional Chinese Medicine, certified laser technician, and clinical hypnotherapist—the centre has the expertise and experience to effectively treat a range of conditions with laser therapy, all within its holistic approach to health and well-being.

“What’s really exciting is Acubalance has been pioneering the use of laser for fertility in Vancouver and North America,” says Brown, noting that Acubalance is the first natural fertility clinic in BC to offer the service, which uses LLLT to stimulate blood flow to reproductive organs, regulate inflammation, and boost cellular energy production. It’s especially promising for couples coping with aging-related reproductive problems or who have been through repeated unsuccessful invitro fertilization (IVF) cycles. But the health and healing potential of LLLT reaches much further than fertility.

“We also use laser therapy for pain and injuries: neck pain, herniated disc, knee and low back pain, and for headaches,” Brown says. “We’ve used it along with acupuncture for frozen shoulder, polycystic ovarian syndrome, and shingles. We know how important the microbiome is for gut health; research has shown benefits of laser therapy for the microbiome, too.

“We see enormous potential for women who are struggling to conceive and for people dealing with chronic pain,” he adds. “You can read patient success stories on our website.”

All of our cells are powered by little structures called mitochondria, Brown explains. Eggs have about 200 times more mitochondria than any other cell. When follicles are maturing, they use a tremendous amount of energy. And early embryo division and implantation require lots of energy.  After 35 years, the mitochondria wear down. At age 40, nine out of 10 eggs can be abnormal.

Studies show that the mitochondria of older eggs are capable of producing significantly less adenosine triphosphate (ATP), which is the source of cellular energy. This has a significant impact on fertility, as the rate of division and successful implantation of embryos has more to do with the amount of energy (ATP) than with maternal age per se, Brown says. Consequently, the capacity of cold laser to improve ATP production of eggs may have an effect on their viability. 

Increasing energy level (ATP) in the cells, improved blood circulation, softening of scar tissue and a reduction in inflammation: these factors are all beneficial to female reproduction in general and to the receptivity of uterine lining.

Brown came across studies out of Japan by a doctor named Toshio Oshiro at Sanno Hospital. Oshiro had been treating a 55-year-old woman in menopause for back pain. Part of his protocol was to stimulate blood flow from head to toe with LLLT. Her pain resolved—and her period returned. Another patient, also in menopause, visited him for back pain. After being successfully treated with laser therapy, she resumed menstruation as well.

Oshiro went on to lead an extended trial of LLLT in 701 infertile patients. Of those, 22 percent became pregnant, and the treatment resulted in a successful live birth rate in 50 percent of pregnancies.

LLLT studies have also pointed to the efficacy of laser treatment in raising the quality of the male partner’s semen, in particular motility.

It’s a growing body of investigation that Acubalance is building on. Acubalance’s on-site laser acupuncture treatment protocol for frozen embryo transfer (FET) day for comprehensive chromosome screened (CCS) embryos has had a higher pregnancy rate and lower miscarriage rate in women compared to some who did not receive the treatment at a local fertility clinic. Acubalance is about to embark on a study with that clinic to see if they can repeat these results in a more controlled setting.

Brown cautions that not all lasers are alike. The type and quality of equipment matter. Weak-powered lasers are not going to have desired health effects. The lasers in use at Acubalance are sophisticated and effective. Dosage is critical as well. If you’re not in the care of trained, qualified experts, it is possible to underdose or even to have too much of a good thing.

In addition to LLLT, Acubalance uses naturopathic medicine, acupuncture, nutrition, Chinese medicine, mind-body medicine, nutritional IV therapy, and Maya massage to maximize egg and sperm quality, uterine receptivity, and overall health.

“Laser therapy leads to the regeneration and repair of abnormal cells,” Brown says. “The process results in the elimination of symptoms, including pain, and enhances the body’s immune system response for natural healing.”

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(Reuters Health) – The AbbVie drug elagolix, already used to treat the pain of endometriosis, can significantly reduce the chances of heavy menstrual bleeding caused by uterine fibroids, according to the results of two studies reported in The New England Journal of Medicine.

Uterine fibroids are non-cancerous growths in the uterus that can cause problems such as pain, pressure, heavy periods and infertility in as many as half the women who have them. They are very common, particularly among African American women.

The elagolix treatment, if approved by the U.S. Food and Drug Administration, could give women a new option for dealing with the bleeding. Current treatment sometimes involves injections given monthly or every three months. Elagolix is a pill whose effects appear and fade much more rapidly and predictably. The new studies did not directly compare the two treatments.

“This does provide a different approach and many women may prefer that,” lead study author Dr. William Schlaff of Thomas Jefferson University in Philadelphia told Reuters Health in a telephone interview. “We know it’s effective for at least six months. If that can be prolonged, it could act as a bridge to get to menopause, where hormone levels drop naturally.”

“But if you’re 32 years old (with a fibroid bleeding problem) this may not be a bridge you want to use for 20 years,” he said. Such women may want to consider a hysterectomy or some other option.

The two new studies – which were identical – followed a total of 790 women with a menstrual blood loss of more than 80 milliliters (about 2.7 ounces) per month.

At the six-month mark, among women getting placebo treatment, 8.7% in one study and 10% in the other saw their monthly blood loss reduced by at least 50%.

When the women were given elagolix alone, the success rates were 84.1% in one study and 77% in the other.

The treatment suppresses ovarian sex hormones, increasing the odds of osteoporosis. So in some women, doctors also gave hormone therapy to compensate.

With that hormonal “add-back therapy,” monthly flow was still reduced by at least 50% in 68.5% of women in one study and in 76.5% in the other.

Add-back therapy alleviated decreases in bone mineral density caused by elagolix but it also increased the number of hot flushes in both trials, and in one trial, it increased the likelihood of spotting between periods, the researchers found.

Most side effects of the drug “were considered by the investigators to be mild or moderate in severity,” they reported.

The studies, known as Elaris UF-1 and Elaris UF-2, were financed by AbbVie, which sells the drug under the brand name Orilissa.

The 300-milligram twice-daily elagolix treatment would cost more than $47,000 per year, according to prices on goodrx.com. In contrast, monthly leuprolide injections, which are an established treatment, costs roughly $7,000 per year.

Compared with placebo recipients, elagolix recipients with add-back therapy also had higher levels of the oxygen-carrying protein hemoglobin in their blood and were more likely to have their periods cease altogether.

They also tended to score higher on quality of life questionnaires.

Schlaff, who chairs the department of obstetrics and gynecology at Thomas Jefferson, predicted that if the drug is approved for fibroid bleeding, it will change the way women are treated.

“A lot of women want to use oral medication” instead of periodic injections, he said. “Women are going to say, ‘I don’t want to commit to a 1- or 3-month dose.’ Or they may want to start with one and move to another.”

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Endometriosis is a chronic pain disorder that affects an estimated 1 in 10 women around the world between the ages of 15 and 49. Yet, despite the disorder’s prevalence and often debilitating pain, women suffering from it tend to be either dismissed or offered a limited number of treatment options. 

But a new study from researchers in Spain may change that. The research team has demonstrated, using a mouse model, that a moderate dose of THC could not only reduce pain associated with endometriosis, but could even be effective at reducing internal cysts associated with the disorder.

Not a Modern Medical Mystery 

While discussions of endometriosis may have become more common in recent years, with women voicing their first-person accounts of the disorder, the disease itself is far from new. Descriptions of the disorder appeared in medical texts as far back as the late 1800s, and despite a better modern understanding of what causes endometriosis pain — the inflammation of endometrial tissue that has grown outside of the uterus on a woman’s ovaries, bowels, or pelvis — the cause of endometriosis itself is still unknown.

As for treating the disorder, women often face challenges from the start, not only because endometriosis symptoms present similarly to other disorders, like pelvic inflammatory disease, but also because endometriosis pain is often dismissed as merely menstrual pain. After diagnosis, treatment options for endometriosis range from over-the-counter pain relief, like ibuprofen, to hormone treatments to, in severe cases, hysterectomy.

Mice and Medical Marijuana 

In search of better options, a team of Spanish researchers turned to mice and the psychoactive component of marijuana — THC. 

“With a lack of effective treatments, women with endometriosis usually rely on self-management strategies,” the study’s senior author Rafael Maldonado, Professor at the University Pompeu Fabra of Barcelona, Spain, said in a statement. “Although cannabis comes with a large number of potential side effects, its medicinal properties could provide pain relief in endometriosis and other conditions.”

The researchers implanted endometrial tissue around the pelvis of an experimental group of female mice, in order to mimic endometriosis symptoms, and left a control group of mice untouched. As with endometriosis in women, the afflicted female mice began to demonstrate pain and anxiety symptoms, as well as cognitive impairment and the development of endometrial cysts. Once these symptoms were established, both groups of mice were given daily 2mg doses of THC over a 28-day period. 

More Than Pain

The team found that the mice with endometriosis experienced decreased pain in their abdomens as a result of their THC doses, as well as lessened cognitive impairment. While this study certainly isn’t unique in connecting cannabinoids with pain relief, the team did find another surprising effect of the THC dosage: cyst inhibition. The researchers found that endometriosis mice had smaller endometrial growths after completing the THC regimen. 

Swing and a Miss 

Despite the promising results of the study, the researchers were still unable to determine THC’s effectiveness in several key areas of endometriosis, including anxiety, fertility, painful intercourse and extreme menstrual cramps. However, following this study the researchers have partnered with the Gynecology Service of the Hospital Clinic of Barcelona, Spain, to begin conducting clinical trials of this approach in women with endometriosis. 

With any luck, positive results from this impending clinical trial could finally spell relief for the tens of thousands of women suffering from endometriosis.

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For the estimated 11 percent of American women between1 5 and 44 living with endometriosis, symptoms like severe pain, fatigue, and nausea can profoundly disrupt their lives. Yet endometriosis remains under-diagnosed, with a lack of effective treatments.

That’s why many women are taking symptom relief into their own hands by using cannabis, according to a recent survey published this November in the Journal of Obstetrics and Gynaecology Canada. Other women are turning to cannabidiol (CBD) for pain relief, hoping to address the symptoms without the high. 

“Pain relief in endometriosis is an important topic, as it can impact women on so many levels, including work, relationships, academic studies, and of course their mental health,” says study co-author Mike Armour, PhD, a post-doctoral research fellow in women’s health at Western Sydney University’s NICM Health Research Institute, a government-funded group that focuses on integrative and complementary medicine research and policy in Australia.

Dr. Armour’s team surveyed nearly 500 Australian women between the ages of 17 and 45 and found that 13 percent say they use cannabis to self-treat endometriosis symptoms. The authors estimate that their findings suggest approximately 10 percent of Australian women with endometriosis use cannabis for symptom and pain management.

Why are patients self-managing their symptoms?

Women frequently report that they can’t get endometriosis symptoms under control with recommended medications or surgery; there’s little evidence to show current treatments relieve endometriosis pain. NSAIDS like ibuprofen, for one, don’t appear to be effective, and there’s a strong potential for addiction and abuse with opioid painkillers. Although research suggests hormonal birth control can reduce symptoms, many women stop or avoid using it due to perceived side effects like mood swings and depression. 

“Women with endometriosis often report that despite various medications, they have pain that is difficult to deal with,” Dr. Armour tells Florence Health. That’s why it’s not surprising they’re turning to cannabis and CBD, he adds, since limited studies suggest these drugs may (or may not) relieve pain.

The difference between cannabis and CBD

Cannabis is the most popular illicit drug in the United States; there has been a steady rise in use every year since 2007, with 7.7 percent of American adults reporting using it within the past month as of 2017. That may be in part because it’s well on its way to becoming a legal medical therapy. A total of 33 states and the District of Columbia have legalized medical marijuana to date; 11 states and D.C. also permit marijuana for recreational use, with another 16 states having decriminalized the possession of small amounts of the drug.

“Prescribing” CBD and Cannabis

Marijuana remains illegal at the federal level, so the act of prescribing it is still illegal, even in states that have legalized it. Physicians and some APPs can, however, write a recommendation for and discuss the benefits of the plant if the patient suffers from a qualifying condition covered by their local law (usually severe conditions like cancer, HIV/AIDS, glaucoma, or multiple sclerosis).

Because the Drug Enforcement Agency classifies cannabis as a schedule 1 drug — with more restrictions than even fentanyl or methadone — officially, there are “no currently accepted medical use and high potential for addiction.” It requires a rigorous approval process to study, so to-date there’s little peer-reviewed research. That leaves providers hesitant to recommend a drug that’s hasn’t been rigorously studied and whose contents and dosage aren’t regulated by the FDA.

Meanwhile, interest in cannabidiol, or CBD, has skyrocketed in recent years. While CBD is an essential component of marijuana, it doesn’t contain tetrahydrocannabinol (THC) and therefore doesn’t cause a “high.” A full 14 percent of American adults say they use CBD, according to an August 2019 Gallup poll, most often for pain (40 percent), anxiety (20 percent), and insomnia (11 percent).

Only one CBD-derived drug, which treats seizures in children, has been approved by the Food & Drug Administration (FDA). All 50 states have legalized CBD in some form, and retailers have added it to pretty much any product you can imagine — from cheeseburgers to toothpicks to mouth wash.

How can cannabis and CBD affect endometriosis?

Cannabis mimics endocannabinoids, natural molecules that act on the endocannabinoid system (ECS), which maintains homeostasis in the body. ECS receptors, in turn, are found throughout the human body. The ECS participates in a wide variety of processes, including pain, stress, sleep, metabolism, immune function and reproduction. 

While research is lacking, Dr. Armour says there’s another reason to believe cannabis could have a particularly powerful effect on endometriosis pain. Both the uterus and ovaries have highly expressed cannabinoid receptors, he explains. Some researchers even think cannabis could slow the growth of endometrial tissue.

“The endocannabinoid system has been found recently to interact with specific mechanisms associated with pain,” explains Dr. Armour. “It also appears to play an important role in cellular proliferation and apoptosis, which may explain why cannabis is being used by women with endometriosis. However, little has been done clinically to investigate this currently.”

What the research says

While there’s little research into cannabis for pain, one recently published paper found it may can effectively reduce pelvic pain and opioid use. In Dr. Armour’s study, on average, respondents rated the effectiveness of cannabis a 7.6 out of 10, with 55 percent reporting they were able to reduce the need for pharmaceuticals by at least half. Women reported the greatest improvements in sleep and nausea/vomiting, with only 10 percent saying they experienced adverse side effects, like anxiety, drowsiness, and rapid heart rate. 

CBD, meanwhile, appears to have analgesic, anti-inflammatory, and immunomodulatory properties — but “the jury is out at the moment as to whether it can provide as much potential pain relief in endometriosis as THC does,” says Dr. Armour. 

What should you tell patients with endometriosis about using CBD or cannabis? 

For now, researchers agree that there’s not enough research to make a conclusion about the benefits or risks of cannabis. People who are at risk of developing addiction or schizophrenia should avoid it altogether, while patients with lung disease should avoid smoking it since it causes airway inflammation, wheezing and chest tightness.

Understanding the risks

For patients interested in using cannabis, “talking with a physician who understands the ECS and has experience in prescribing cannabis is an important first step,” says Dr. Armour. “Like all medications, it still comes with certain risks.” 

CBD, on the other hand, may seem less risky to recommend, as it doesn’t have the psychoactive effect of THC and no known risk of abuse or dependence, notes Dr. Armour. But there still are dangers.

Because CBD isn’t regulated by the FDA, it’s impossible to confirm the exact ingredients or concentration in any given supplement. The FDA has found some CBD products contain contaminants like pesticides and heavy metals. 

What’s more, CBD can raise levels of certain medications. “[It’s] been shown in preclinical and case studies to change the way certain medications are metabolized. It appears to be of more concern than THC in this particular regard,” notes Dr. Armour. Providers should ask patients taking CBD about any other medications they’re on and closely monitor for adverse side effects, he adds.

Safer alternatives

Dr. Armour also calls out the other, nonpharmacological treatments that can address endometriosis symptoms. Some women find relief from heat packs, hot baths, and hot water bottles. Research suggests that acupuncture twice a week for several months may reduce pelvic pain, although it’s unclear whether the effect lasts after patients complete treatment. And a low-FODMAP diet may help improve any IBS-like symptoms. Just remind patients that this eating plan is for short periods of time.

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A group of women in the Scottish Borders have joined together to raise awareness about an incurable condition that affects one in every 10 women in the UK.

Tao McCready set up the Endometriosis Awareness in the Scottish Borderssupport group to get people talking about the disease which can cause pain and even infertility.

She said: “I realised there was no support for girls who suffer with endometriosis. So I set it up, and it’s purely to support the women out there and let them know that there is a place that they can come and they can talk.”

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No woman looks forward to those days of the month . Most struggle with mood swings, swelling and cramping. But women with endometriosis often find that having the period is particularly unbearable. For them, an average period is anything but average, with debilitating cramps.

During a typical menstrual cycle, the inner lining of the uterus, the endometrium, accumulates and then breaks off with bleeding that occurs during menstruation. In women with endometriosis, that lining grows outside the uterus, usually around the ovaries or under the uterus in an area called posterior cul-de-sac . As it accumulates and breaks off, it causes small amounts of bleeding inside the pelvis. This leads to pain, inflammation, swelling and scarring.

If you think you might have endometriosis, you should know that you are not alone. The condition affects hundreds of thousands of women every year.

Five symptoms

At least there are five common signs of endometriosis. This is what you should keep in mind:

1. Painful periods. Most women have cramps during their periods, but women with endometriosis often have acute pain.

2. Chronic pelvic pain. Sometimes, women have chronic and severe pelvic pain, even when they don’t have their periods, says Christianson. This may be due to prolonged illness and scars.

3. Painful sex. This common symptom, also known as dyspareunia, is due to endometriosis under the uterus. During penetration, women may have severe and localized pain.

4. Cysts in the ovaries. These cysts, known as endometriomas, are another hallmark of endometriosis. They can become large and painful, and often need to be removed.

5. Infertility. Infertility is defined as not conceiving within a year, despite regular sexual intercourse without contraceptives. About 10 percent of women living with infertility have endometriosis. “This is the main cause of infertility because it can cause scar tissue, as well as damage and inflammation in the fallopian tubes, which are necessary to conceive naturally,” explains Christianson. “Research also shows that endometriosis can affect the quality of the ovules and reduce the amount of them in the body.”

The above symptoms are not exclusive to endometriosis. Painful periods do not always point to endometriosis; Sometimes they are a separate condition known as dysmenorrhea. Pelvic pain can also be caused by scar tissue, previous infections or a history of appendicitis. Irritable or inflammatory bowel syndromes can also cause pelvic pain.

Diagnosis and treatment

If you have any of the above symptoms, consult your gynecologist. Women with infertility may need to see a reproductive endocrinologist or a fertility specialist. Some doctors also specialize in pelvic pain and endometriosis.

To confirm a diagnosis, your doctor is likely to perform a minimally invasive laparoscopy. During this procedure, a thin, lighted tube will be placed in a small abdominal incision. This allows your doctor to see your pelvic organs and take a small amount of tissue for biopsy and make a diagnosis.

Often, symptoms can be controlled with medications such as birth control pills or leuprolide acetate. Both prevent the pituitary gland from releasing hormones that make endometriosis grow.

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Endometriosis sufferers are, for the first time, getting the attention they deserve. Celebrity disclosures, a UK petition to parliament supporting recognition of the condition as a disability, and social media have brought it to prominent public attention. 

In Australia in 2017, Victoria’s first reproductive and sexual health plan included endometriosis, and in 2018, as a result of intense lobbying by advocacy groups and a national cross-party coalition of parliamentary women, Australia’s National Action Plan for Endometriosis, “the first ever blueprint seeking to improve the treatment, understanding and awareness of an often misunderstood and crippling condition” was released. 

Endometriosis is a chronic gynaecological condition that can be associated with severe pelvic pain and fatigue, and profoundly affects quality of life, relationships, sex and intimacy, and fertility. It affects women, as well as some in the trans community. 

The symptoms of endometriosis can cause people’s social life, employment and study to be curtailed. Combined with the financial implications of ongoing health care, the economic and social costs to individuals of the condition can be very high. Endometriosis is common, affecting, to differing extents, up to 10 per cent of women in Australia. 

Endometriosis is an oestrogen-dependent, inflammatory condition, associated with growth of endometrial-like tissue outside the uterus. There’s no known cause or cure. Treatment options are limited – medications that suppress ovarian function for controlling symptoms, such as the oral contraceptive pill, can be unsuitable because of unacceptable side effects, and surgical excision of endometriosis lesions via keyhole surgery (laparoscopy) may be temporary because of regrowth of tissue. Left untreated, damage to pelvic organs from adhesions can be severe and irreversible. Despite this, endometriosis is still not listed as a chronic condition in Australia.

Much has been written about women’s experiences of the condition, and of healthcare for investigations, diagnosis, treatment and symptom management. 

A long time can pass between first presenting with symptoms, often in adolescence, and a definitive diagnosis, which requires a laparoscopy. Many women are found to have endometriosis only when seeking treatment for infertility, causing grief that earlier opportunities for treatment were missed. 

Women describe experiencing dismissive reactions to their symptoms, such as the pain being “just part of being a woman” or being “weak and letting the pain get to them”. 

Social stigma surrounding menstruation can limit discussion among peers, family, colleagues and others, prevent understanding of the distinction between normal and abnormal levels of pain, and when to seek medical investigation.

Management of symptoms and disability may necessitate prolonged engagement with health services, which are almost universally described as inadequate.

Women and general practitioners participating in our newly-published study described examples of misleading or false information, lack of referral options for affordable specialist and multidisciplinary care, and poor attention to the psychosocial consequences of living with the condition; doctors admitted to uncertainties about the professional capabilities of some members of their own profession. Frustration and helplessness were expressed by both groups of participants in the study. 

Clearly, there’s room for improvement.

The study participants expressed clear opinions about the models of care they’d like to see. 

Women wish to be believed, for shared decision-making and individualised care plans, and for their expertise about their own bodies to be recognised.

Doctors want to have accessible and affordable referral pathways, easy access to accurate information, and tools to assist active management of the condition. 

Both groups want access to accurate, up-to-date information, multidisciplinary care, new treatment modalities, and better understanding of how to address the psychosocial consequences of endometriosis.

How can this be achieved? 

International research priorities for endometriosis are concentrated on treatments, pathophysiology and epidemiology. Important as these are, definitive outcomes are unlikely to improve the lives of people living with the condition and their care providers in the short term.

In the meantime, sufferers and those caring for them need solutions.  Australia’s National Action Plan for Endometriosis lists three priorities: 

1. Awareness and education

2. Clinical management and care 

3. Research. 

Priority 1 is essential because a good understanding of menstruation and how to distinguish healthy from unhealthy periods is essential for girls, women and other members of the community, to facilitate early medical investigation, suitable care plans, acceptable long-term management, and to reduce stigma. 

Priority 2 specifies actions related to diagnosis, treatment options, care pathways and clinical guidelines, as well as the provision of ongoing support for people living with endometriosis. People need better access to high-quality primary and specialist care that is acceptable and can improve meaningful outcomes. 

Priority 3 lists actions related to research, including tailoring of international priorities for the domestic context. 

People deserve evidence-based solutions that are acceptable and effective. But what is acceptable, and does the service reform have measurable improvements in biopsychosocial outcomes? 

Models of collaborative care that include the patient as collaborator, facilitate access to affordable multidisciplinary care, and promote active participation in decision-making and activities to manage symptoms, treatment and psychosocial challenges, are needed. 

Care models should be co-designed with consumers, and tested using rigorous methodology and endometriosis-specific, as well as physician satisfaction and health economic, outcomes. 

The groundwork has been laid. Now is the time for action to improve the lives of those affected by endometriosis.

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Orilissa (elagolix), an FDA-approved medication for managing endometriosis pain, lowers ovulation rates in a dose-dependent manner but does not seem to affect the amount of developing eggs in the ovaries — which is important for maintaining a woman’s fertility — a Phase 1 trial reports.

The study, “Elagolix suppresses ovulation in a dose-dependent manner: Results from a 3-month, randomized study in ovulatory women,” was published in The Journal of Clinical Endocrinology & Metabolism.

An oral medication, Orilissa was approved in the U.S. in July 2018 for the management of moderate-to-severe endometriosis pain, including painful periods (dysmenorrhea), painful intercourse (dyspareunia), and nonmenstrual chronic pelvic pain. It is sold by AbbVie and is available as 150 mg and 200 mg tablets.

The therapy works by dialing down the signals of gonadotropin-releasing hormone (GnRH), a hormone that stimulates the production of follicle stimulating hormone (FSH) and luteinising hormone (LH). In turn, these hormones stimulate the maturation and release of an egg during ovulation, and the production of estrogen in the ovaries.

Orilissa inhibits GnRH receptors in the brain’s pituitary gland — an organ that produces many of the body’s hormones — preventing FSH and LH production and lowering estrogen. This helps reduce inflammation and relieve pain.

Because estrogen makes endometrial lesions grow, lowering its levels is a common way to manage the symptoms of endometriosis.

Orilissa also is under development for the management of heavy menstrual bleeding associated with uterine fibroids.

In healthy, premenopausal women, a prior trial showed that Orilissa was well-tolerated and quickly brought down estrogen levels. This effect could be rapidly reversed after the women stopped taking the medication.

In a subsequent study, Orilissa doses higher than 100 mg twice daily led to such low levels of progesterone — an ovarian hormone that rises after ovulation to prepare the body for pregnancy — that it suggested ovulation was stopped. However, the study was too short to fully determine whether this really was the case.

To specifically address this question, AbbVie scientists — joined by researchers at the Eastern Virginia Medical School in Norfolk, Va. — conducted a trial in healthy women to characterize the effects on ovulation and sex hormones of different doses and dosing regimens of Orilissa.

The trial was a Phase 1, randomized, open-label study (NCT01403038) that enrolled 205 healthy, premenopausal women, ages 18 to 40 years, in the U.S.and Puerto Rico.

Orilissa pills were given during three 28-day dosing intervals (84 consecutive days) at 100 to 200 mg once daily, 100 to 300 mg twice daily, and 300 mg twice daily plus estradiol/norethindrone acetate (E2/NETA; brand names Activella and others) once daily. E2/NETA therapy consists of lab versions of estrogen and progesterone, and is used to treat menopause symptoms.

Throughout the study, ovulation rates — specifically, how many times each woman ovulated — were measured by transvaginal ultrasound, which uses an ultrasound probe placed inside the vagina, as well as blood levels of several hormones, including estradiol and progesterone. Estradiol is the main estrogen found in women.

The study confirmed that Orilissa suppressed ovulation in a dose-dependent fashion. The percentage of women who ovulated was highest at 100 mg daily (78%), followed by 150 and 200 mg daily, and 100 mg twice a day (47%-57%). It was lowest at 200 mg twice daily (32%) and 300 mg twice daily (27%).

Taking E2/NETA in addition to Orilissa further reduced the ovulation rate by 10%, but did not lower estradiol levels any further. Blood levels of progesterone also confirmed these results.

The treatment also lowered overall levels of LH and FSH, resulting in suppression of estradiol and progesterone in a dose-dependent manner. This supported the prior observations. It also made the uterus wall, called the endometrium, stay thinner throughout the menstrual cycle.

However, Orilissa did not seem to harm the ovaries’ pool of developing eggs than can be fertilized — known as the ovarian reserve. This was indicated by the levels of anti-Müllerian hormone (AMH), a hormone secreted by cells in developing egg sacs, which remained relatively stable throughout the study.

This finding is important for women’s fertility.

It suggests “that there was the continued growth of small follicles [ovarian structures where eggs develop] during the treatment period. Given that endometriosis and uterine fibroids are common in women of reproductive age, the rapid return of ovulatory function may be desirable in this population,” the researchers said.

After stopping treatment with Orilissa, normal menses took a maximum of 42 days to resume.

As for safety, 79% (162 of 205) of women experienced a treatment-related side effect. The most common were headache (25%), hot flush (23%), and nausea (19%).

Overall, the study shows that women with Orilissa have lower ovulation rates but may still ovulate. Thus, women using the medication “should use effective methods of contraception,” the researchers said.

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Women with endometriosis in Australia using cannabis on their own to manage their disease report its use helps to ease pain and other symptoms like nausea, with very few side effects, a study based on an online survey reports.

The study, “Cannabis Use, a Self-Management Strategy Among Australian Women With Endometriosis: Results From a National Online Survey,” was published in the Journal of Obstetrics and Gynecology Canada.

Severe chronic pelvic pain that significantly affects quality of life is well-reported in endometriosis.

Non-surgical treatments for this disease include combined oral contraceptives or progestins alone and non-steroidal anti-inflammatory drugs, among other options. However, these therapies are limited in their effectiveness, and discontinuation rates range between 25% and 50% due to side effects.

Opioids are commonly prescribed for pain, but carry a high risk of dependency and a potential for overdose.

Due to these limitations on existing medical treatments, women with endometriosis are increasingly turning to self-care or lifestyle interventions for symptom relief. More research is needed, the study said, into the effectiveness of these self-management strategies.

But preliminary studies suggest that cannabis, which acts via the endocannabinoid system (ECS), can help manage pain in women with this disease.

“Cannabis has a long history of use in the ancient and scientific literature for various conditions such as period pain, however until now nothing has been investigated for cannabis being used for endometriosis,” Justin Sinclair, the study’s lead author, an NICM Health Research Institute Research Fellow and coordinator of the Australian Medicinal Cannabis Research and Education Collaboration, said in a press release.

Researchers designed an online survey targeting Australian women with surgically confirmed endometriosis to determine the prevalence of cannabis use, its cost, tolerability, their opinions of its effectiveness, and possible changes they have made in pharmaceutical treatment use.

“Past research has demonstrated that certain compounds within cannabis known as cannabinoids exert analgesic and anti-inflammatory activity. Our research sought to determine the prevalence, tolerability, and self-reported effectiveness of cannabis in women with endometriosis,” Sinclair said.

A total of 484 responses were analyzed, among which 76% of women reported practicing general self-management strategies in the previous six months.

Among these people, 13% (48 women) reported using cannabis for symptom control, and most likely it was not approved medical cannabis, the study noted.

“Medicinal cannabis regulations in Australia were introduced in December 2016, but few prescriptions of standardized, quality-assured medicinal cannabis in this pathway have been dispensed,” the researchers wrote. “[I]t is likely that most, if not all, of the women in this survey were using illicit cannabis,” and this raises serious concerns as to “quality control and potency.”
Survey responders rated cannabis’ effectiveness on pelvic pain at 7.6, on a zero to 10 numeric rating scale with 10 being most effective. Twenty-seven of these women, 56%, reported its effectiveness allowed them to cut by at least half their pharmaceutical medication use.

Women reported the greatest improvements were in sleep, nausea, and vomiting. Side effects were found to be infrequent (10%) and minor, particularly when compared to adverse event reporting for non-steroidal anti-inflammatory drugs (11%−14%) and opioid-based medications (78%).

“Women report good efficacy of cannabis in reducing pain and other symptoms, with few adverse effects reported,” the researchers wrote.

As studies have found a high number of cannabinoid receptors (which cannabis binds to) in the female reproductive system, it is plausible that cannabis can help biologically alleviate endometriosis symptoms.

But Sinclair cautions that cannabis use is not without risk.

“One in ten women in the study who used cannabis reported an undesirable effect such as drowsiness, rapid heartbeat, or increased anxiety,” he said.

And, again, while Australian women with endometriosis report using cannabis quite commonly, it likely was not via prescription.

“Due to the timing of when the survey was administered, most if not all of the women in the survey would have been using illicit cannabis as access to medicinal cannabis was still in its infancy,” said Mike Amour, MD, with the NICM Health Research Institute and the study’s chief investigator.

“This means we don’t have any information about the different varieties of cannabis that women were using, or what might have been in the cannabis that was being used as it was derived from illicit sources which are not quality assured,” he said. “Also, this was a self-reported survey, which can lead to over or under estimation of the positive or the negative effects.”

The scientists add that further clinical research is warranted to determine the effectiveness of cannabis in managing endometriosis’ symptoms.

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One in eight Australian women with endometriosis are turning to cannabis in a bid to relieve their chronic pain.

Researchers from NICM Health Research Institute, Western Sydney University, and UNSW Sydney surveyed 484 women on how they self-manage the symptoms of the debilitating condition. The results are published in the Journal of Obstetrics and Gynaecology Canada.

What they found was that more than three-quarters of women surveyed turned to strategies like yoga, dietary changes, heat packs, and exercise. The most effective strategy, however, was reported to be cannabis.

Researchers estimate that Endometriosis affects more than 1 in 10 Australian women. The chronic condition occurs when cells like those that line the uterus – the endometrium – are found outside the uterus.

During ovulation, the cells thicken. But unlike the cells that are found inside the uterus, these outside cells cannot leave the body. They bleed, cause inflammation and pain before they heal. Over time this process can lead to scar tissue.

The pain of endometriosis can be chronic and so severe that it stops women from going about their daily life. Symptoms include chronic pelvic pain, painful periods and infertility.

Cannabis does more than relieve pain

The participants reported that cannabis use reduced their pelvic pain, improved their sleep and decreased nausea and vomiting. They also reported that cannabis reduced their anxiety and depression.

43 per cent of the participants reported daily cannabis use, with 50 per cent of participants reporting that they smoked the plant-based medicine. A little under 12 per cent used edibles or oils.

Adverse effects associated with cannabis use were reported to be low, with 10 per cent of women reporting drowsiness, increased anxiety or tachycardia.

Lead author on the study Justin Sinclair from NICM Health Research Institute, says that in the past, cannabis has demonstrated effective pain-relief properties.

“Cannabis has a long history of use in the ancient and scientific literature for various conditions such as period pain, however until now nothing has been investigated for cannabis being used for endometriosis,” Sinclair says.

“Past research has demonstrated that certain compounds within cannabis known as cannabinoids exert analgesic and anti-inflammatory activity. Our research sought to determine the prevalence, tolerability, and self-reported effectiveness of cannabis in women with Endometriosis.”

For some, current treatments just don’t cut it

In Australia, there is a general lack of awareness surrounding endometriosis. Currently, there is no known cause and there is also no cure.

Endometriosis symptoms can be treated with drugs, most treatments are not suitable long term. The current treatments involve oral contraceptives or progestogens as well as non-steroidal anti-inflammatory drugs. However, sometimes these medications don’t always provide adequate pain control. Sometimes, there are side effects.

Surgery can also be performed that removes the endometriosis lesions and scar tissue. In severe cases, a Hysterectomy may be performed.

However, the researchers found in 56 per cent of participants who reported using cannabis, they also reported a significant reduction in the use of pharmaceutical medications.

“Clinical trials of cannabis use in this group are warranted to determine efficacy, compliance, and side effect profile,” the researchers write.

Most women are using illicit cannabis

Currently, Australian law requires legal medicinal cannabis use to follow regulated pathways. However, researchers say that few prescriptions for medicinal cannabis have been dispensed. This has led Australian women to turn to illicit use of cannabis.

“Due to the timing of when the survey was administered, most, if not all of the women in the survey would have been using illicit cannabis as access to medicinal cannabis was still in its infancy,” says Chief Investigator on the study, Mike Armour from NICM Health Research Institute.

“This means we don’t have any information about the different varieties of cannabis that women were using, or what might have been in the cannabis that was being used as it was derived from illicit sources which are not quality assured,” he says.

“Further research is needed to assess the effectiveness of quality-controlled medicinal cannabis and women with endometriosis.”

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The average cost for a woman with endometriosis both personally and for society is around A$30,000 a year, according to our research, published today in the journal PLOS ONE.

Most of these costs are not from medication, or doctors’ visits, although these do play a part. Rather, they’re due to lost productivity, as women are unable to work – or work to their usual level of efficiency – while experiencing high levels of pain.

Remind me, what is endometriosis?

Chronic pelvic pain is pain below the belly button that occurs on most days for at least six months. The most common identifiable cause is endometriosis. Endometriosis is the presence and growth of tissue (called lesions) similar to the lining of the uterus that’s found outside the uterus.

Women with the condition have a variety of symptoms, including non-cyclical pelvic pain (which is like period pain but occurs regularly throughout the month), severe period pain, pain during or after sexual intercourse, and severe fatigue. Gastrointestinal problems, such as severe bloating (often called “endo belly” by those who suffer from it) and pain with bowel motions, are also common.

Currently, surgery (a laparoscopy) is the only way to make a formal diagnosis of endometriosis – this is where a small camera is inserted into the pelvic/abdominal cavity to investigate the presence of endometriosis lesions.

Both medical and surgical treatments are commonly used for women with endometriosis. Medical therapies include non-steroidal anti-inflammatories (such as ibuprofen and naproxen), oral contraceptive pills and other forms of hormonal treatments.

While these medications can be effective for some, many women experience side effects and need to stop using them.

Surgery is the current “gold standard” of treatment, but despite successful surgery many women find their pain and symptoms can return within about five years after surgery.

How many women have it?

Around 7% of Australian women aged 25–29 and 11% of women aged 40–44 are likely to have endometriosis, which is similar to the worldwide estimate of one in ten women.

Delays in diagnosis are extremely common, and combined with needing surgery for a diagnosis, means many women suffer for years with chronic pelvic pain before being diagnosed with endometriosis later in life. This contributes to the difficulty in getting exact figures for how many women in Australia have endometriosis.

Worldwide estimates of chronic pelvic pain range from 5% to 26% of women. In New Zealand, it’s around 25% and is likely to be similar in Australia but we are lacking any up-to-date and reliable statistics on this.

What did our study find?

Endometriosis and chronic pelvic pain affect all aspects of women’s lives – social activities, romantic relationships and friendships, education, and work attendance and productivity.

We surveyed more than 400 women aged 18 to 45 who were either diagnosed with endometriosis or experiencing chronic pelvic pain. We asked about health-care costs (both out of pocket and funded), employment-related costs, and other costs related to childcare and household maintenance. We also asked about their pain levels.

We found the average cost for a woman with endometriosis was around A$30,000 per year.

Around one-fifth of this cost was in the health sector, for medications, doctors’ visits, hospital visits, assisted reproductive technology such as IVF, and any transport costs to get to these appointments. Of this, A$1,200 were out-of-pocket costs.

The bulk of the costs (over 80%) were due to lost productivity, either because of absenteeism (being off work) or presenteeism (not being as productive as usual because you’re sick). Women with endometriosis often use up all their sick leave and then often have to work when they are in severe pain.

Overall, if one in ten women aged 18 to 45 do have endometriosis, the total economic burden in Australia may be as high as A$9.7bn per year for endometriosis alone.

Pain scores had a very strong link with productivity costs. Women with the most severe pain had a 12-times greater loss of productivity, in terms of working hours lost, than those with minimal pain.

Overall, taking into account all costs (health sector, out-of-pocket, carers and productivity) women with severe pain have six-times greater costs (A$36,000) a year overall compared to those with minimal pain (A$5,700).

Finally, we also looked at the cost of illness not only of those women with a diagnosis of endometriosis, but also of those that had other causes of chronic pelvic pain, such as vulvodynia (pain, burning or discomfort in the vulva) and adenomyosis (growths in the muscular wall of the uterus).

We found the overall costs between the two groups – those with endometriosis and those with other types of pelvic pain – were very similar.

So what should we be doing?

The economic burden of endometriosis is at least as high as other chronic disease burdens such as diabetes. However, many women are not receiving the support they need.

We also need to prioritise funding for endometriosis research, which until recentlyhas attracted comparatively little research funding.

Plans are underway to increase awareness and education, and improve diagnosis and pain management. Unfortunately, there is no such plan for women with other forms of chronic pelvic pain.

Reducing pain, by even a modest 10-20%, could improve women’s quality of life and potentially save billions of dollars each year.

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