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What’s Known, New, and Ahead with Endometriosis

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Much has been written about endometriosis which is not surprising given over 7 million American girls and women have the condition as do 176 million women worldwide. Those with the condition often experience significant pain and a major impact on their quality of life. Also, the condition explains infertility for 25-50% of women, according to the American Society for Reproductive Medicine (ASRM).

Still, though endometriosis is as common as diabetes and asthma, it has yet to attract the same level of attention and support, as well as research funding. As March is Endometriosis Awareness Month, it is especially timely to share current information on diagnosis and treatment – especially as it affects fertility – plus identify priorities to improve education and overall care for this all-too-common disease.

While there is still no known cause of endometriosis, it is very likely that certain genes predispose women to develop the disease so women have a higher risk if their mother and/or sister(s) are also affected. All stages of endometriosis can potentially contribute to infertility, probably for different reasons in different women, depending on the amount of endometriosis and other individual health characteristics.

To start, all women deserve to have timely diagnosis, referral, and treatment. Unfortunately, for a variety of reasons, it takes an average of 6 years to diagnose endometriosis from the time women present with symptoms. Such delays affect treatment and may be especially critical for women trying to get pregnant where age matters. RESOLVE: The National Infertility Association suggests early diagnosis and treatment can be beneficial to women concerned about their fertility. Those experiencing symptoms may want to see a specialist to assess fertility; results can help guide next steps.

Research to date has helped identify the most effective techniques for diagnosis and treatment of endometriosis. For example, the definitive diagnosis “gold standard” is a visual inspection of the pelvis through a laparoscopy (unless endometriosis is visible in the vagina or elsewhere). Evidence does not show that an MRI or ultrasound is useful to diagnose or exclude endometriosis compared to a laparoscopy. There is currently no biomarker that can diagnose endometriosis.

The majority of women with endometriosis and infertility do become pregnant with treatment. Results vary by option, but studies show at least 40 to 50 percent of women will become pregnant by taking standard fertility drugs. An additional 40 percent of women who undergo multiple cycles of in vitro fertilization with embryo transfer (IVF ET) , regardless of the stage of endometriosis, will get pregnant.

Women with moderate or severe endometriosis often need surgery or assisted reproductive technologies (ART) to become pregnant. Treatment by laparoscopy increases pregnancy rates for women where no other causes of infertility have been found. Also, surgical removal of endometriosis lesions has been successful in 30 to 80 percent of cases, depending on the severity of the disease. Trying to get pregnant and deliver a healthy baby when you have endometriosis creates special challenges and requires careful planning with your physician. To address infertility, your treatment plan will consider your age, duration of infertility, pelvic pain, and the stage of your endometriosis, to maximize your chance of success.

Overall, there’s good news as diagnosis and treatment of endometriosis can be quite effective – including for those with infertility. Research is helping to identify the most effective evidence-based practices. However, much more remains to be done – especially given the prevalence of the condition and the impact on health and quality of life.

So, what needs to be done to improve the state of care?

To start, education of both women (including adolescents) and providers must be improved – severe pain with menstruation that keeps you from work or school is not normal. There should be standardized clinical treatment, better practice pathways, and multidisciplinary care teams specializing in endometriosis. Raising awareness of the condition – and its burden – can help inform the drive for much needed additional funding for research.

Under an initiative supported by the James Lind Alliance (JLA) Priority Setting Partnership (PSP), women with endometriosis and treating clinicians worked together to agree on the most important uncertainties in endometriosis to influence prioritization of future research to improve treatment(s). The goal is to focus future research and earn greater financial investment. More research can result in a simple, non-invasive, universal test and safe, cost-effective treatments for pain and infertility. Their Top Ten list of research priorities can be found here.

Achieving the best care for endometriosis starts with improving how important the condition is considered within women’s healthcare. Despite the major burden of the disease, lack of knowledge is widespread among women with the disease and many types of providers. The result is often a failure to diagnose and manage endometriosis, as well as insensitive care. A UK study by the All Party Parliamentary Group for Women’s Health (WHAPPG) found that endometriosis treatment was often described as inadequate – only 16% received written information and half were not told about complications of treatment. They propose to improve care through:

  • Taking seriously the symptoms and concerns of women with pelvic pain and abnormal uterine bleeding
  • Timely referral to appropriate specialist care
  • Offering information about treatment options, side effects, and complications
  • Better information resources
  • Best practice pathways
  • Education regarding menstrual health at secondary schools
  • Multidisciplinary healthcare teams
  • Following practice guidelines

So many women – and their families – are deeply affected by endometriosis and chances are you are among this group or know someone who is. You can help improve care including treatment for infertility by joining awareness activities, sharing the facts about the condition and donating to research. It’s complicated now, but there’s a future where better education and information resources, timely referrals, and standardized clinical practice for diagnosis and treatment will simplify what is now so challenging.

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