More than 10 percent of women, transgender and gender-diverse people in the United States have endometriosis. 

In September, I became part of that not-so-exclusive club. 

My path to diagnosis, as many others experience, was lengthy. For years, it was nearly impossible to find a healthcare provider who listened or believed me.

Finding accurate, essential information about endometriosis from what the disease actually is to what kind of doctor can best help you can be incredibly difficult to navigate.

Here are some suggestions based upon my experience:

How do I find an endometriosis specialist?

If you suspect you have endometriosis, you should seek out an endometriosis specialist, who can properly excise the diseased tissue. 

Endometriosis specialists will always be gynecologists, but not every gynecologist is an endometriosis specialist, according to The Seckin Endometriosis Center.

A true specialist will prioritize excision surgery over ablation, have specific training in treating the disease and focus on treating endometriosis patients rather than delivering babies or providing generalized women’s healthcare like most other OB-GYNs. 

Heather C. Guidone, the surgical program director at The Center for Endometriosis Care in Atlanta, which sees more than 1,500 endometriosis patients a year, said individuals should look for a doctor who has thorough knowledge of endometriosis, an openness to collaborating on your treatment and be up to date on cutting-edge surgical techniques and research on endometriosis. She said they should also be a high-volume surgeon in terms of excising endometriosis.

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You also should look for a minimally invasive gynecologic surgery fellowship — or “MIGS” — on the physician’s credentials. Ideally the fellowship will have focused specifically on endometriosis cases. If not, look for extensive training with other endometriosis specialists.

Are there any specialists in Houston?

Yes. Because it is such a specialized field without any official accreditation, it can be difficult to find a comprehensive list of doctors. 

The Endometriosis Foundation of Houston created a list of recommended surgeons locally and across Texas. The organization also has a Facebook group, where individuals can read first-hand accounts about individual doctors and ask questions.

Nancy’s Nook Endometriosis Education also has a list of recommended surgeons around the world, including Texas. Doctors are added to the list after their credentials are vetted and numerous patients share positive surgery outcomes, according to group creator Nancy Petersen. The list is regularly updated and can be accessed by joining the group. 

iCareBetter is another resource that has a database of endometriosis specialists. 

Once you have found a doctor, it’s important to do your own research to feel confident in your decision. Check healthcare websites like Healthgrades, U.S. News and World Report and Vitals to see reviews on the doctor. See what their background is on their practices’ website and cross reference their credentials with LinkedIn. You also can look into the hospitals where they have operating privileges and check if they receive money from any drug or medical device companies. It also can be helpful to see if the doctor ever has or continues to participate in research.

I picked a doctor and I’m getting ready for my appointment. What should I ask?

Your appointment isn’t just for the provider to examine you — it’s also for you to make sure it’s a good fit. 

It’s always good to ask your doctor about their background and experience with endometriosis, how often they treat the disease, how many surgeries they perform, what their outcomes are like, and what treatments they recommend. Prospective patients should make sure their specialist has a multidisciplinary team, as endometriosis often can infiltrate the bowels or other areas of the body that may require a colo-rectal or thoracic surgeon. 

Before your appointment, I recommend writing down a list of questions to ensure you don’t forget what to ask. Suggested questions can be found through the Endometrosis Foundation of America, The Endometrosis Canada Network, Center for Endometrosis Care, Eighty-Six the Endo and the Nancy’s Nook Facebook group.

Remember, there is no harm in seeking a second, third or fourth opinion. 

“You wouldn’t buy a house without checking the foundation or having an inspection first,” Guidone said. “Don’t be afraid to ask those questions to your doctor. If they’re not answering them satisfactorily or they can’t do whatever you’re asking of them, it’s fine to move along. It’s OK. There are other doctors out there.”

How can I manage my endometriosis symptoms long term or while I wait for surgery?

There are several things to try to help curb symptoms.

Because endometriosis is an estrogen-dependent disease, sometimes birth control medication that only contains progesterone can be beneficial in helping symptoms, particularly with making your period less heavy or stop altogether. One of the most commonly prescribed for endometriosis patients is Norethindrone.

A hormonal IUD that is progesterone only, like Liletta or Mirena, also can be beneficial. 

Some doctors will recommend Lupron Depot or Orilissa, which is marketed as a drug for endometriosis pain. Both medications often come with severe side effects, such as loss of bone density or symptoms of menopause, including hot flashes and mood swings. 

While these medications may help with symptoms, it’s vital to remember it will not eliminate endometriosis or shrink existing diseased tissue.

McKenna Oxenden uses both ‘cupping’ and acupuncture to help alleviate symptoms, Thursday, Dec. 12, 2024, in Houston. (Lexi Parra / Houston Landing)

Because endometriosis is an inflammatory disease, acupuncture can be a useful tool to help with pain and control inflammation. Pelvic floor physical therapy has also proven helpful in managing pain.

Many patients also find it helpful to switch to an anti-inflammatory diet and focus on foods that are rich in antioxidants and fiber.

Katie Edmonds, a nutritional therapist focused on endometriosis, said that means eating lots of colorful fruits and vegetables, leafy greens and focusing more on whole grains and healthy fats like avocado and fatty fish, such as salmon. Processed foods — like prepackaged snacks and sugary drinks — should be limited. She also recommended drinking more water and limiting alcohol.

Another lifestyle change could be something as simple as checking the bread you buy at the store, which often has extra sugars in it, and swapping it for a healthier or homemade option, Edmonds said.

Some find it beneficial to go gluten or dairy free, but that may depend on whether your symptoms or bloating worsen with certain food. It may be a good idea to write down what you eat and how you feel to determine whether it may be food related. 

Ultimately, Edmonds recommends people make small, incremental changes. 

“So many women immediately want to start something like a crash diet immediately when in reality, behavioral changes month by month work better because by the end of the year, you’ll have incorporated different learned behaviors rather than nothing sticking,” she said.

Are there products that may help with day-to-day pain or flare-ups?

McKenna Oxenden puts on her MyObi, a heated belt and TENS unit, in her apartment to help alleviate pain, Thursday, Dec. 12, 2024, in Houston. (Lexi Parra / Houston Landing)

Since my excision surgery in September, I have worked to try to find ways to mitigate my “flares” and to manage my continued daily pain. What works for me may not work for you, but here are a few things that have helped me or I have learned have helped others.

  • TENS machine
    • When I am cramping or experiencing bad back pain, this helps provide some relief and distract from the pain. A TENS unit is fairly inexpensive and uses weak electrical currents to stimulate the nerves, which helps block pain signals and release endorphins, that in turn can help loosen tight muscles.
  • MyObi Apollo 2.0
    • It is a portable, wearable device that is both for heat and TENS. Its design makes it easy to fit snugly along your belly or back and because it is slim and able to go directly on your skin, it can be discreetly worn. I’ve found it to be perfect for everyday use whether I’m running errands, in the office at work or even flying on an airplane. 
  • Somedays
    • A company that makes products entirely for period pain. I have found their cramp cream and solace soak to be extremely effective. Their heating pad which can be easily warmed up in the microwave is also shaped to perfectly cover your uterus.
  • REB Relief 
    • A heating pad created by an endo patient for those who suffer from period pain. It hits all those hard-to-reach spots. 
  • Guava Health
    • A personal health tracker that can be utilized on both Apple and Android products. Users can integrate healthcare provider notes and track various metrics, from water intake and pain levels to urination and bowel movements. It’s one of the most comprehensive, customizable health apps I have used and has proven to be a valuable resource in tracking my pain and providing me with data I can relay to my doctors.
  • Tina Healthcare
  • Spicey

I’m interested in learning more about endometriosis. Any recommendations?

Yes! There are several books and podcasts that I have found helpful in managing my diagnosis and further educating myself about endometriosis. 

Books:

  • Heal Endo: An Anti-inflammatory Approach to Healing from Endometriosis by Katie Edmonds
  • Beating Endo: How to Reclaim Your Life from Endometriosis by Amy Stein and Dr. Iris Kerin Orbuch
  • The Doctor Will See You Now: Recognizing and Treating Endometriosis by Dr. Tamer Seckin
  • Vagina Problems: Endometriosis, painful sex and other taboo topics by Lara Parker

Podcasts

Documentaries

I’d like to connect with others who have endometriosis. Where can I find them?

Facebook Groups

Organizations 

Newsletters

  • Somedays, a bi-weekly newsletter from the period pain relief company that features a roundup of the latest news in women’s health, with a focus on endometriosis 
  • Endo News, operated through the Endometriosis Foundation of America, it shares the latest news and medical developments around the disease

Reddit Communities 

Discord


Instagram 

Did we miss something or is there a resource you think we should add? Reach out to McKenna Oxenden at mckenna@houstonlanding.org or @mack_oxenden on X. McKenna usually covers Harris County, with a focus on local government and accountability. She would love to hear your endometriosis story or answer any remaining questions you have about the disease. 

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McKenna Oxenden is a reporter covering Harris County for the Houston Landing. She most recently had a yearlong fellowship at the New York Times on its breaking news team. A Baltimore native, she previously...