Working with an endometriosis specialist — or an intentional team of informed healthcare professionals — can help you get the care you need to effectively manage your symptoms and improve your overall quality of life.

Endometriosis is a chronic pain condition that affects at least 11% of people assigned female at birth. That’s more than 190 million people worldwide.

Despite its frequent occurrence, many healthcare professionals might need more preparation to diagnose or treat the condition. They may need more funding for endometriosis-related research to understand it.

That said, as far as endometriosis is concerned, some clinical oversight is usually better than none.

“Endometriosis is a progressive disease, meaning it can worsen over time if left untreated,” says Laura Purdy, MD, OB-GYN, chief medical officer at Wisp, a telehealth platform focused on sexual and reproductive health.

“So, while it’s often best to have a dedicated endometriosis support team, not having one should not deter you from finding treatment,” she says.

For example, a primary care physician or gynecologist can offer guidance, prescribe treatments, and refer you to specialists down the line if necessary.

A face-to-face appointment with an informed healthcare professional can allow you to ask questions about yourself, your body, and how endometriosis affects your body.

But a doctor’s appointment isn’t the only time and place you can learn more about the disease.

Various digital outlets are available, where you can learn research-backed information about endometriosis from specialists.

These include:

Online forums and support groups are also available, where people with endometriosis and their loved ones share information about the disease, helpful treatments, and more.

These include:

You might find it helpful to list the clinicians you work with and how you feel when working with them.

The most important thing when you have endometriosis is to have clinicians who take your condition and pain seriously, says pelvic floor therapist Heather Jeffcoat, DPT, owner of Fusion Wellness & Physical Therapy in Los Angeles.

“When providers don’t believe your pain is real, it’s difficult to believe that you will ever start to get better,” she says. Unsupportive clinicians may also be less likely to suggest or prescribe treatment options that may help you feel better.

If you have unaddressed symptoms, consider working with an expert in that particular arena to troubleshoot it.

Endometriosis treatment typically requires a multidisciplinary approach, explains Jeffcoat. That’s because the condition can cause various other physical and mental health conditions.

People with endometriosis often get care from some combination of the following:

“If an endometriosis patient also has issues with gut health and a diagnosis of IBS, they might utilize the Nerva app,” says Jeffcoat. “Meanwhile, if a therapist is inaccessible to someone navigating mental health issues either geographically or financially, they might look into telehealth therapy.”

“Endometriosis coverage can be complex, varying between insurance companies, as well as different plans offered by the same company,” says Purdy. So, if you haven’t already, set aside some time to review your insurer’s website.

“If you’re unable to find out if your insurance covers endometriosis treatments, you can always contact your insurance company’s customer service department,” she says. “From there, you can ask specific questions about your coverage and potential specialist care.”

If you’re interested in working with a specific endometriosis specialist or another healthcare professional, you can also call their office and ask, adds Purdy.

You might say:

  • “Does your office accept insurance for visits and treatments?”
  • “Do you have any financial assistance programs or resources available to help with healthcare costs?”

Purdy also recommends contacting organizations like the Endometriosis Association or the Endometriosis Foundation of America, which offer resources and guidance on dealing with insurance.

Working with a clinician with specialized expertise is great, but it isn’t always possible.

You might find that a primary care physician or gynecologist who’s up to date with current research and treatment guidelines — in other words, versed in the theory — is a worthwhile alternative.

In either case, Purdy recommends that you suss out their understanding of the disease by asking some or all of the following questions:

  • “What’s your experience in treating people with endometriosis?”
  • “Have you received any specialized training or certifications in endometriosis care?”
  • “Can you explain the latest developments or emerging treatments in endometriosis care?”
  • “When do you recommend for endometriosis, and what types of procedures do you perform?”
  • “Can you recommend support groups, educational resources, or advocacy organizations for people with endometriosis?”
  • “Can you outline a personalized treatment plan for me, including short-term and long-term goals?”

The right clinician for you isn’t just knowledgeable about the condition — they also need to make you feel comfortable, seen, and heard, says Purdy. “You should feel listened to about how endometriosis affects you as an individual,” she says.

The following questions can help you get a sense of how they relate to you and your specific case:

  • “What diagnostic tests or procedures do you recommend to confirm or assess the extent of my endometriosis?”
  • “How can I best manage the pain and discomfort of my endometriosis daily?”
  • “How might endometriosis affect my fertility, and what are my options for preserving fertility if desired?”
  • “How often should I schedule follow-up appointments to monitor my condition and treatment progress?”
  • “What signs or symptoms should prompt me to get immediate medical attention between appointments?”

After your first appointment, reflect on their proposed treatment plan, overall communication style, and bedside manner, suggests Purdy.

If you can, take a second to reflect on your gut instinct, adds Jeffcoat. “Patients tend to have great gut instincts,” she says. They may not be a great fit if you feel rushed or that they’re talking past you.

Meanwhile, if you feel confident in their expertise, comfortable discussing your condition openly, and supported in your endometriosis journey, they could be the right healthcare professional for you, says Purdy.

There’s currently no cure for endometriosis, but you can manage its symptoms through various clinical treatments and holistic therapies.

Working with an endometriosis specialist or an intentional team of generalized healthcare professionals is often a great way to develop a treatment plan uniquely suited to your particular symptoms.

Online support groups and other digital resources can help bridge gaps in in-person care.

Gabrielle Kassel (she/her) is a queer sex educator and wellness journalist who is committed to helping people feel the best they can in their bodies. In addition to Healthline, her work has appeared in publications such as Shape, Cosmopolitan, Well+Good, Health, Self, Women’s Health, Greatist, and more! In her free time, Gabrielle can be found coaching CrossFit, reviewing pleasure products, hiking with her border collie, or recording episodes of the podcast she co-hosts called Bad In Bed. Follow her on Instagram @Gabriellekassel.