Endometriosis is a chronic condition when tissue similar to that found in your uterine lining (aka your endometrial tissue) grows outside your uterus. That tissue in unexpected places = irritation, a painful tugging sensation, and internal scarring.
A research review showed that endo affects about 1 in 10 women of reproductive age, but it can sometimes take years to get a diagnosis for the condition.
So, how do you get an endometriosis diagnosis?
To diagnose endometriosis, your doc will go over your symptoms and then order one or more of the following diagnostic tests:
- pelvic exam
- magnetic resonance imaging (MRI)
There’s currently no tried-and-true cure for endo. But knowing the steps to getting an endometriosis diagnosis can unlock access to effective treatments.
Endo can cause significant pain and raise the risk of experiencing infertility, intestinal, and bladder conditions.
If Aunt Flo’s approach has you canceling weekend plans and prepping for several days curled up with excruciating pain, it’s time to ask your doc for help.
Other symptoms that might indicate endometriosis include:
- painful sex
- irregular periods
- pain when you pee or poop during your period
- super heavy periods (aka, soaking through a pad or tampon every hour)
- passing blood clots bigger than a quarter
- midcycle bleeding
- pins-and-needles leg pain
Nodding your head to the list above? First, know that you’re not alone. Second, here’s what to expect during your heart-to-heart with the gyno (‘cuz you *did* make that appointment, right?).
Your first appointment
Prepare to answer questions about your health history, symptoms, and periods.
It’s super helpful if you’ve tracked your last few cycles. When did the bleeding start? When did it end? How long did the pain last?
After discussing your symptoms, your doctor will probably recommend a pelvic exam. You might also be referred to specialists for diagnostic tests like:
- pelvic ultrasound
- laparoscopy (the only sure-fire way to diagnose endometriosis)
Who’s more likely to have endo?
The National Institutes of Health (NIH) say that endo is more common in people who have:
- never given birth
- their first period before 11 years old
- menstrual cycles (first day of bleeding to the next first day of bleeding) that are shorter than 27 days
- heavy periods that last longer than a week
- family members living with (or who lived with) endometriosis
In rare instances, females can also get endometriosis after a C-section.
So, you’ve gone over your symptoms. Next come the tests.
A pelvic exam lets your doctor physically see and feel what’s going on inside your vaginal canal.
After disrobing from your waist down, you’ll put on a paper gown and lie faceup on the exam table. The doc will use their gloved fingers to feel inside your body. They’ll check for palpable signs of endo like cysts or scar tissue.
Pelvic exams can be pretty uncomfortable, but they shouldn’t be painful. If you’re a sexual assault survivor and are concerned about anxiety or a panic attack, tell your doctor. They’re there to help.
An ultrasound gives your healthcare professional a peek into what’s happening *inside* your body. The ultrasound is typically performed by an ultrasound tech instead of your primary care doctor.
Here’s how it works:
- You’ll undress from the waist down.
- For a pelvic ultrasound, the doc or tech will slather jelly on your lower belly. They’ll press a wand-like transducer against your belly and move it around to get a picture of your organs.
- For a transvaginal ultrasound, the transducer goes into your vag. The doc or tech will move it around at different angles and depths, but things shouldn’t be painful. If you’re feeling uncomfortable or anxious, it’s OK to speak up.
Ultrasounds are handy diagnostic tools because they can reveal so much more than a pelvic exam. Your doc might see small, fluid-filled lesions called “chocolate cysts” — a clear sign of endometriosis.
MRI (magnetic resonance imaging)
An MRI produces super-detailed pics of your insides. This time, instead of sound waves, your organs and bodily tissues are revealed through a giant magnet, radio waves, and computer imaging. #Fancy
MRIs aren’t always necessary for an endo diagnosis. Sometimes doctors recommend an MRI to prepare for surgery if you need to have painful endometrial tissue removed.
Laparoscopy is considered a minor surgery because it’s typically outpatient and involves a small incision. You’ll be given general anesthesia, so it’s best to arrange a ride home.
During the procedure, your surgeon will see inside your belly and collect tissue samples that will confirm or rule out an endo diagnosis.
Once you’ve bagged an endo diagnosis, it’s time for the next step: feeling better!
Keep in mind that endometriosis is a chronic condition. There’s currently no known cure, but there are various treatments to help manage your symptoms.
Yep, good old NSAIDs (nonsteroidal anti-inflammatory drugs) and acetaminophen (Tylenol)!
Though over-the-counter (OTC) meds won’t stomp out debilitating pain, they can help with mild to moderate endo. Some peeps successfully manage their condition with well-timed pain meds during their period.
PSA: If you’re taking more pills than the bottle recommends, talk with your doctor. Taking too many pain relievers can wreak havoc on your stomach.
Hormone therapy can address endo symptoms *and* potentially alter your perception of pain.
Hormone treatments work by dialing down your estrogen so that your tissue doesn’t grow as quickly. This can prevent new growth and scars, but it won’t erase old adhesions.
This kind of endo treatment can include:
- birth control pills
- progesterone and progestin
- gonadotropin-releasing hormone (GnRH) medicines
- aromatase inhibitors
- androgen receptor agonist (Danocrine)
For super serious or painful cases, your doctor might recommend surgery to remove the tissue outside your uterus. The procedure is considered generally low-risk, but it could affect your ability to get pregnant.
If you think you need surgery for your endo, talk with your doctor. Your surgeon’s strategy could differ depending on your symptom severity and health goals.
People with endo sometimes have trouble getting pregnant. But fertility treatments like controlled ovarian stimulation and in vitro fertilization (IVF) may help.
If you’re curious about fertility treatments, your primary doc can refer you to a fertility specialist.
Wanna help manage your pain with natural fixes? Try these at-home treatments and lifestyle tweaks.
- Clean up your meal plan. There’s no magic endo-ending diet, but noshing on more omega-3 fatty acids (hey there, salmon and nuts!) and nixing trans fats (buy-bye, fast food and nondairy creamer) may help.
- Apply heat. From hot water bottles to warm baths, heat keeps your muscles relaxed and your blood flowing. Ahhhh…
- Take fish oil.The omega-3s in fish oil supplements can help you manage painful inflammation.
- Move it, move it. When your uterus is causing you severe pain, the last thing on your mind is exercise. But moving your body can relax your muscles, helping you feel better and healthier in general.
- Skip the lattes and libations. Caffeine and alcohol can both exacerbate endo pain. The same goes for processed snack foods, trans fat, and gluten.
Some people live with endometriosis for years before they’re diagnosed. Others load up on pain meds each month, assuming they have mild, manageable endo.
Occasionally, people are also misdiagnosed with other conditions that have sneakily similar symptoms to endo, like:
- ovarian cysts
- pelvic inflammatory disease (PID)
- irritable bowel syndrome
- irritable bladder
- certain musculoskeletal conditions
Sometimes it’s not endo at all and it’s one of the conditions above.
If you suspect you have endo, talk with your doctor. Trying to self-diagnose won’t get you the help you need.
Like any condition that interferes with daily life, endometriosis can feel like a physical *and* emotional condition. It can feel frustrating, lonely, and painful.
But remember, many people dealing with endo may find treatment combos that may improve their health by relieving their pain.
If you think you have endo, talk with your doctor about getting an official diagnosis. Also, check out these resources for additional support and community 💕: