3 Things To Do After An Endo Diagnosis
If you’ve been silently suffering from painful periods and struggling to find answers, finally receiving an endo diagnosis can be a relief. Though it may be upsetting, there’s a silver lining to the clarity you get. Instead of traveling down a path of what if’s, you can start your journey of what now.
The number of women with an endo diagnosis is much higher than you may think. An estimated 1 in 10 women is affected by endometriosis during their reproductive years. That’s nearly 180 million women in the world! Unfortunately, it’s so common that many women likely have endometriosis but are never diagnosed (it took me 15 years to get my endo diagnosis!)
The Path to an Endo Diagnosis
It’s extremely common to find mis- or undiagnosed cases of endo in women. That’s why I’m so adamant about endometriosis awareness. It’s crucial for women to find answers and relief with a possible endo diagnosis from a specialist. (I only waited three months after my initial appointment for my endo diagnosis, and that’s lucky.)
Before seeing an endo specialist, though, you can be proactive toward heading in the right direction for a possible endo diagnosis by getting:
A colonoscopy. Endometriosis and IBD (inflammatory bowel disease) share some common symptoms like cramping and pain. A colonoscopy can rule out IBD.
Endo-specific bloodwork. Consider requesting panels that test for Ca-125, CRP, estradiol (must be drawn ~7 days after ovulation), prolactin (best drawn in the morning), vascular endothelial growth factors (VEGFs), zonulin, IL-6, androgens, estradiol (must be drawn ~7 days after ovulation) and TNF-a.
Transvaginal ultrasound. Ultrasounds can help uncover endometriomas, or, if done by a specialized surgeon, can even potentially uncover deep infiltrating endometriosis without invasive surgery..
Eventually a laparoscopy—a standard surgical procedure required for those seeking a definitive endo diagnosis.
Note: Though there’s no one-size-fits-all endometriosis diagnosis test, taken together with your symptoms, history, and ultrasound, these labs can most definitely point you in the direction of an endometriosis diagnosis.
What to Do After an Endo Diagnosis
Here are the first three things I recommend doing as soon as you receive your endo diagnosis (and I even encourage you to start them well before!)
1. DO PERSONAL RESEARCH: YOUR ENDOMETRIOSIS JOURNEY WON’T BE THE SAME AS SOMEONE ELSE’S
After receiving an endo diagnosis, many women feel relieved that there’s an explanation for all those years of symptomatic conditions and pain. Though doctors may recommend a number of options, there is no cure for endometriosis. Endo symptoms and severity range from woman to woman. It’s essential to intimately understand your own systems, triggers, and remedies so you can live a normal life (or as close to a normal life as possible!).
Endo is a progressive illness you’ll have to manage for the rest of your life. What works for some endowarriors might not always work for you. Don’t feel discouraged or judged by your choices to find what works best to manage YOUR endo.
Some things you may consider exploring following your endo diagnosis include:
Whether or not to pursue hormonal therapies. Some signs you may not tolerate hormonal therapies well include anxiety/depression, spotting before or after your period, having tried them in the past with no success, signs of nutrient deficiencies like fatigue, dry skin, brittle nails and dull hair, or unresolved digestive symptoms like bloating, constipation or heartburn.
A tailored endo diet. Diet is by far one of the most effective management strategies for symptoms of endometriosis. Diet is so powerful that it can transform your gut microbiome and resolve bloating and constipation. It can support proper hormone balance to mitigate gynecological cancer risk and hormonally-driven symptoms and it can significantly reduce total body inflammation (I have seen it first hand, time and time again with my clients).
Requesting helpful labs annually. Labs like MCV, MCH, a full iron panel, progesterone, estradiol, CRP, CA-125, androgens, prolactin, WBC, full thyroid panel and serum copper levels can help you keep on top of endo progression. Not sure how these labs can help? Check out my online self-paced program to become your own best doc.
Whether fertility is a priority for you. Post laparoscopic excision for endometriosis is the BEST time to achieve pregnancy.
2. MANAGE SYMPTOMS WITH GUIDANCE: START WORKING WITH AN ENDOMETRIOSIS DIETITIAN
Nutrition is one of the most effective ways to manage endometriosis pain. Your diet plays a key role in reducing estrogen levels, inflammation, and nutrient deficiencies, which can help improve your endo symptoms.
For example, magnesium, protein, and calcium are some of the most common (and easily replenishable) nutrient deficiencies in endobabes.
Magnesium: Pumpkin seeds, meats, leafy greens, legumes, and whole grains are high in magnesium. Your skin will also absorb small amounts of magnesium, so enjoying an Epsom salt bath regularly can be helpful. If you still struggle with low levels of magnesium, magnesium citrate or glycinate form supplements can also be beneficial.
Protein: If you eat meat, I always recommend getting your protein from quality lean meats like chicken, turkey, and fish. If you choose a plant-based lifestyle, foods like whole food sources of soy, and legumes can be good sources of protein.
Calcium: Calcium is one of the most easily accessible nutrients for those diagnosed with endometriosis. While milk, yogurt, and cheese are extra high in this critical nutrient, there are plenty of plant-based options to choose from. widely available unless you avoid dairy. Some may still choose a calcium supplement; however, I always caution my clients to think twice if you struggle with GI issues because calcium supplementation may worsen constipation!
As an endometriosis-specialized dietitian, I help create a nutrition plan unique to your symptoms and your body’s needs. The process is tailored to you and your endo journey, so you can live a normal life with minimal dietary restrictions.
3. RECOGNIZE THAT YOU’RE NOT ALONE: FIND A SUPPORTIVE COMMUNITY OF ENDOWARRIORS
Having a safe place to discuss your endo struggles can help you cope with an endo diagnosis. Though family and friends may have the best intentions, it’s hard to relate with those who have never experienced the often-debilitating pain from endo flares. Finding other endowarriors who understand your journey feels so empowering. That’s why my Endobabe Empowered online program includes access to a private Facebook community with endo guidance and questions answered!