Endometriosis is a chronic condition with no known cure. Although it has been diagnosed in about 10% of people assigned female at birth around the world, it is likely that more people suffer from it than are diagnosed. People who seek diagnosis may suffer for 10 or more years before receiving a diagnosis, while others may not seek or receive a proper diagnosis at all.
Endometriosis is a systemic, inflammatory disease most commonly understood to affect internal reproductive organs, but can develop anywhere in the body, including the brain, and has also been confirmed in people assigned male at birth. It is clinically characterized by the presence of endometrium-like tissue found outside the uterus, in the form of endometriomas (“chocolate cysts”), fibrosis, and/or formation of adhesions (fibrous bands of dense tissue). It’s a spectrum disease with many different subtypes and clinical presentations, which may cause pain, inflammation, infertility, GI and other organ dysfunction, and more. In lay terms, endometriosis is a disease characterized by the presence of endometrial-like tissue found in the body.
As with most conditions that are predominantly understood to affect people assigned female at birth, healthcare providers often disregard the acute pain experienced by endometriosis patients. Medical racism further complicates proper care and treatment. Women of European descent are more likely to receive care in the form of hormones and moderate pain relief to prevent risking fertility via surgery. On the flipside, Black women, and other women of color, are either ignored or pressured to manage their condition through a total hysterectomy. Both of these treatment plans are based on misinformation that harms patients and won’t actually treat their endometriosis.
Some quick facts about endometriosis:
- Anyone, regardless of gender, sex, or age, can have it
- Endometriosis is not the endometrium, renegade menstruation, or uterine tissue
- Lesions can be found anywhere in the body
- Some lesions may not be surgically removable due to their location (for example, on the bladder)
- The size and amount of lesions does not correlate to symptom severity – it’s possible to only have 1-2 small lesions that cause excruciating pain, or have many lesions without much pain
- Leaving endometriosis untreated can lead to infertility and cause debilitating symptoms
- Endometriosis can only be confirmed through laparoscopic surgery
- Excision surgery is the gold standard for treatment, yet there are estimated only 200 excision specialists in the world
- Surgery is a treatment, not a cure. Endometriosis has no cure.
Pursuing a diagnosis can be daunting if you suspect you have endometriosis due to the widespread misinformation in the medical community. Seeking lasting relief can feel like fighting a war. Arming yourself with accurate, up-to-date information about endometriosis and understanding what to expect throughout the diagnostic process can help you feel prepared. Consider this your preliminary battle plan, along with some resources from the experts.
Find a provider. A regular OBGYN or your local Planned Parenthood isn’t going to be able to provide the proper care for endometriosis. If they take you seriously, most of them will only know outdated and inaccurate definitions of the disease, and offer treatments to match.
A doctor who specializes in endometriosis and excision surgery will understand your experience and provide the gold standard of treatment. The best course of action is to find an excision specialist through your own research, word-of-mouth recommendation, or a referral from an existing provider. However, there are estimated to be only about 200 excision specialists in the world, so finding and accessing one can be tricky.
I opted to have a consultation at my usual clinic, with the surgeon assigned to my OBGYN’s team, who I was assured was trained in excision. This didn’t mean she was a specialist, but I was so overwhelmed by the medical milieu at that time, I didn’t have the energy to shop around and I was desperate.
Before your appointment:
- Make a list of symptoms, frequency, and try to rank their severity on a scale from 1-10
- List any known family reproductive health history
- Compile records from relevant past appointments or procedures, if applicable
- Make a list of any questions you have for the provider. The Center for Endometriosis Care has a great list of suggested in-depth questions to ask.
- If possible, find a trusted friend, partner, or family member to come with you
During your appointment:
- Expect to have an internal exam, after which your provider may order a number of different tests, including but not limited to:
- Bloodwork, which may or may not be collected right after the appointment
- Pelvic Ultrasound
- CT scan
- MRI
Note that none of these tests can be used for a definitive diagnosis, but they are useful to help rule out other potential causes for your symptoms.
- Don’t forget to ask your questions!
- If you are denied any tests, treatments, or referrals, let them know you would like them to document that decision in your record
Red flags. If any of these come up either in your research or during an appointment, run and find a new one:
- They challenge or ignore your pain, or any other symptom you describe
- They insist that men cannot develop endometriosis
- They push hormone therapy (this is most common for people with pale complexions)
- They discourage surgery because of the risk to fertility (leaving endo untreated is a greater risk)
- They push a total hysterectomy (this is most common for melanated folks)
- They encourage you to get pregnant. While pregnancy may alleviate symptoms for some patients, it does not treat the condition. It’s also a red flag in itself when providers assume people with uteruses want or are ready to get pregnant.
- They recommend ablation, or a combination of excision and ablation
Ablation superficially burns lesions on the surface level, but leaves the root, and often causes more damage. It also prevents the tissue from being pathologized. I told my surgeon I strictly wanted excision before she had a chance to offer ablation, to which she agreed without hesitation. It was concerning that she performed ablation at all in her practice, but her response reassured me and I felt confident that she would at least remove what tissue she could safely, without creating additional complications.
Thankfully, a year and a half later, I stand by my decision, but I also wish I had better access to a specialist. Whether you’ve been at it for years or just started trying to get your endometriosis diagnosed, you’re not alone. I would never have had the confidence to pursue my diagnosis and surgery without the support of the online community of people supporting each other from lived experience.
For further education and advice, here are some of my trusted experts in the endo realm:
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