Which endometriosis treatment scenario is right for you?

It is estimated that about 10% of women and girls suffer from endometriosis. Treatment of endometriosis, when properly diagnosed, depends on the goals of the woman in relation to getting pregnant. Learn what endometriosis treatment scenario is right for you given your fertility goals.

Endometriosis is difficult to diagnose

Endometriosis, defined as the presence of endometrial tissue outside the uterine cavity, remains a scientific, and sometimes clinical, enigma. Endometrial lesions induce a chronic inflammatory reaction which can lead to symptoms such as pelvic pain, pain with sex, and infertility. The symptoms may be more subtle and be more difficult to diagnose. Extensive and/or large lesions can lead to distortion of the uterus, fallopian tubes and ovaries. Smaller lesions may not block the tubes, but still can cause pain and contribute to infertility.

Endometriosis can be difficult for a doctor to diagnose. Unfortunately, endometriosis cannot be detected through a blood or saliva test. Sometimes, endometriosis can be detected on ultrasound, but it is not always a reliable way to diagnose it. Definitive diagnosis of endometriosis can only be made through surgery.

The statistics for endometriosis can be daunting. In women with pelvic pain, up to 75% may have endometriosis. Additionally, 30-40% of patients with endometriosis are infertile. This is two to three times the rate of infertility in the general population. Clearly this translates into very large numbers of affected women with tremendous social and economic impacts. One study estimated the direct and indirect costs of endometriosis approaches $70 billion including the cost of healthcare and the cost of lost work due to absenteeism.

Endometriosis treatment scenarios

Successful treatment of endometriosis depends on if the patient wants to conceive immediately, in the distant future, or not at all.

Treatment for women who have symptoms of endometriosis and want to conceive immediately: Treatment of this group usually involves laparoscopic surgery to remove the lesions or proceeding directly with fertility treatments such as IUI or IVF. If a physical exam or pelvic ultrasound indicates more extensive disease (with enlarged ovarian cysts with endometriosis), then surgery may be the best initial option. If the anatomy appears normal, then proceeding with IUI or IVF often leads to conception quicker and the pregnancy may ultimately improve her symptoms.
Treatment for women with symptoms of endometriosis who want to delay conception for more than 1 year (but still have the option to conceive later in life): This group may respond very well to suppressive hormonal medication – such as birth control pills, Depo Lupron, a progesterone releasing IUD, or the newer medication recently released, elagolix (Orilissa®). These medications suppress the estrogenic environment that may help decrease the pain caused by the endometriosis. Side effects often include hot flashes and vaginal dryness, so treatment needs to be individualized according to each patient. Surgery is still a reasonable choice in these patients especially when more advanced disease is suspected.
Treatment for women with symptoms of endometriosis who do not want to conceive in the future: This group is often relegated to only one option – a complete hysterectomy and removal of the ovaries. This option can be very effective for women with endometriosis, especially if prior surgery or medical management has failed. However conservative surgery in this group (laparoscopy) or suppressive medication can still lead to improvement in their pain with less risk.

Endometriosis can be a very frustrating disease to experience. It’s also sometimes very difficult to treat. The key is to find a physician who listens to your symptoms and to also take a proactive role in the treatment program. Setting expectations is extremely important – as complete pain relief may not be a realistic goal. Communication with your doctor is extremely important to help maximize the improvement of symptoms and achieving a pregnancy.