In honor of Endometriosis Awareness Month, NPWH Board Member Caroline Hewitt, DNS, RN, WHNP-BC, ANP-BC, explores the current standards of diagnosis and treatment.
Endometriosis is not a new condition to those of us who provide women’s health care, but it is woefully misunderstood by the public. However, it is getting increasing attention from the media and TV and film stars like Lena Dunham and women’s rights activities. This newfound attention means that our patients are learning about this condition from sources as diverse as fashion magazines, blog posts, and everywhere in between.
Occasionally, as clinicians, we can be blind-sided by what our patients are reading and hearing amongst their peers, so it helps to have an idea of what is being said outside the nurse practitioner’s office.
So, in observance of Endometriosis Awareness Month, I would like to use this occasion to briefly review the current standards of diagnosis and treatment as published by ACOG, The American Society for Reproductive Medicine (ASRM), The World Endometriosis Society (WES) as well as The Society of Obstetricians and Gynecologists of Canada.
Endometriosis affects 6 to 10 percent of women of reproductive age, and it is present in approximately 38 percent of women with infertility and in up to 87 percent of women with chronic pelvic pain. It is thought to develop from attachment and implantation of endometrial glands and stroma on the peritoneum as a result of retrograde menstruation. Endometrial lesions result from overproduction of prostaglandins and estrogen, which leads to chronic inflammation. (AAFP, January 1, 2011 ◆ _Volume 83, Number 1)
According to ASRM, “Diagnosis should be viewed as chronic disease requiring a lifelong management plan with the goal of maximizing use of medical treatment and avoiding repeated surgical procedures” (2014). Diagnosing endometriosis can take up to 10 years. This delayed diagnosis is due to the vague presenting symptoms that frequently overlap with other gynecologic and gastroenterologic processes, as well as the fact that the surgical diagnosis comes with risks.
Imaging studies like MRI and ultrasound do not provide reliable diagnosis nor does a pelvic exam adequately indicate the volume of endometriosis. There is also no positive correlation between patient symptoms and extent of disease.
The definitive diagnosis of endometriosis can only be made by histologic examination of the lesions that have been surgically removed. That being said, initial medical treatment with combined oral contraceptive pills (OCPs) (or progesterone only pills) is the recommended first line treatment, even before a definitive diagnosis is made. If there is no response to OCPs/POPs (typically evaluated after 3 to 4 months), it is recommended to proceed with a diagnostic laparoscopy before using medications with higher risk of adverse effects (danazol or GnRH agonists).
If chronic pain doesn’t respond to medical therapy, surgery is the next option. But even after expert removal of endometriosis, recurrence is common; rates can be as high a 55%. The desire to preserve fertility will direct the extent of surgery and type (fertility preserving laparoscopy vs hysterectomy/bilateral salpingo-oophorectomy (BSO). Laparoscopic surgical procedures require specialized training.
Link to Cancers
Endometriosis is associated with some epithelial ovarian cancers (EOC). The risk of developing an EOC is 1% for the premenopausal women with endometriosis and up to 2.5% for the post-menopausal women. It is important to note that endometriosis is not considered a pre-malignant lesion, screening for EOC is not recommended in women with endometriosis and there is no suggestion that prophylactic removal of endometriosis lesions will reduce the risk of EOC.
In summary, endometriosis is a chronic disease that can be difficult to diagnose. The first line treatment, as recommended by all the major women’s health/reproductive health organizations, remains medical. Surgical intervention, like laparoscopy and excision presents with its own risks and also requires the provider to have had specialized training. Decisions regarding extent of surgical intervention should also take into account the childbearing desires of the patient.
It’s great that more women are learning about Endometriosis. This often misunderstood and very personal condition deserves our attention. As Nurse Practitioners, we need to be prepared to listen to our patients and partner with them to ensure their diagnosis, and management, is evidence-based and safe.