The Endometriosis Treatment Journey

Although there is no scientific consensus on a cure for endometriosis, there are many treatment options available to manage symptoms. The large number of potential treatment options, as well as their side effects, associated-expenses, and other factors, can be a lot to sort through, making it hard to decide on a treatment plan. Beyond making the decision with your healthcare provider on what options may be best for you, varying success rates and treatment failures can make navigating through this part of your journey quite difficult.

To get a better sense of life with endometriosis, we conducted our 2018 Endometriosis In America survey. Over 1,200 individuals with endometriosis or endometriosis-related symptoms participated in the question survey, which addressed topics such as diagnosis, quality of life, relationships, treatment, symptom management, and more.

Developing a treatment plan

Responses from the survey indicated that 67% of individuals with endometriosis felt they played an active role in developing their treatment plan. However, satisfaction with current treatment plan is low, with only 13% feeling their endometriosis is controlled. Effectiveness of treatment and potential side effects were the top two factors considered when determining a treatment plan. Further, when it comes to medication-based treatment, 40% reported currently using a hormone therapy (most commonly combination oral contraceptives), and 4% reported currently using GnRH agonists.

Surgical experiences

About 85% of survey participants reported treating their endometriosis with surgery. The most common surgical procedure experienced was a laparoscopy. Roughly 80% of individuals who underwent surgery said they had a laparoscopy. The next most common procedures reported were laparotomies (16%), oophorectomies (12%), and total hysterectomies (11%). Those who underwent a surgical procedure to treat their endometriosis were typically diagnosed at stage 3 or 4, perceived their endometriosis as severe, and had experienced spread of their endometriosis to other organs. Generally, those who underwent surgery only needed to do so one time, however, over 55% of individuals who had a laparoscopy had more than one procedure.

Efficacy of surgical procedures

Despite a large proportion of individuals experiencing surgery, a much smaller proportion found their surgery to be effective. The surgical procedure with the highest reported effectiveness was a radical hysterectomy or total hysterectomy with salpingo-oophorectomy. A high overall effectiveness was reported by 34% of those who had this procedure. In contrast, only 17% of individuals who underwent a laparoscopy found it to be very effective in controlling their endometriosis. More specifically, about half of individuals who had a laparoscopy had symptoms return within six months of the procedure. A similar result was found for those who underwent a laparotomy, oophorectomy, or a laparoscopic uterine nerve ablation (LUNA). Between 35-40% of individuals had their symptoms return within six months after a total hysterectomy or a radical hysterectomy or total hysterectomy with salpingo-oophorectomy. These results suggest that although surgery is a common treatment option for endometriosis, it is not always effective in controlling symptoms long term.

Surgical complications

Additionally, roughly 25% of individuals who underwent a surgical procedure for their endometriosis experienced complications after the procedure. Common complications included:

• Adhesions
• Bladder issues or incontinence
• Infection
• Constipation
• Fatigue
• Prolonged recovery or healing process
• Nausea

Complementary and alternative therapies

Roughly 75% of respondents said they utilized complementary or alternative therapies for their endometriosis. Some of these included taking various vitamins and supplements, while others reported trying heat therapy, cold therapy, cannabis, CBD oil, massage, or acupuncture.

Specifically, 44% of respondents said that they would rather make changes to their lifestyle or diet than take a prescription medication. Some of these diet or lifestyle changes included increasing water intake, increasing fruit, antioxidant, or fiber intake, exercising, avoiding processed, sugary, or fatty foods, practicing yoga, and using essential oils.