Could it be endometriosis?

Could it be endometriosis? It’s a question I put in my patient charts more than I’d like. It’s also a question I sometimes get from patients who have had symptoms but no luck moving the needle on diagnosis (or treatment).

Thing is: endometriosis can look like a lot of things. You can read more about what endo is in this older post. Here are some of the signs  are symptoms from that post with bolded text to highlight some nuance.

  • Period pain: In fact, endometriosis is the most common cause of secondary dysmenorrhea — period pain that is caused by an underlying condition. We suspect it when patients are using heroic doses of pain, have to rearrange life due to their pain, are not responding to usual pain measures, or have other severe period-associated symptoms like nausea and vomiting. That being said, it doesn’t always show up as period pain; you could have endo without period pain. 
  • Heavy menstrual bleeding, potentially with clots. Endometriosis lesions respond to hormone changes, so sometimes we see heavy bleeding, but not always.
  • Dyspareunia: Pain with penetrative intercourse. Might be present or not. Sometimes, it could look like bleeding with or after intercourse.
  • Dyschezia: Pain with bowel movements. IBS is a common comorbidity with endo, and oftentimes patients get their IBS diagnosis first. What this means is that sometimes pain with pooping isn’t really investigated properly.
  • Dysuria: Pain with urination. This could be present. So could increased urinary frequency or urgency. Recurrent UTIs? Could be associated with endo.
  • Mid-cycle spotting: Light bleeding outside of your period. This is usually  at ovulation time and sometimes minimized (also because short-lived ovulatory pain sometimes just happens!). It’s sometimes chalked up to bursting cysts (but if you’ve had one too many cysts burst, it could be endo). 
  • Infertility: There is an association between endometriosis and infertility; however, it’s not a linear one. This can be due to inflammation, adhesions, where endometriosis lesions are present, past surgery complications, and much more. We’re learning more about endo and infertility, but it really is a complex relationship.
  • Chronic pelvic pain: This is pain in the lower abdominal area that is present in some form for over 6 months. This might not just be referring to “pain”, but also pressure and heaviness.
  • Digestive issues: There is a relationship between IBS and endometriosis. See “dyschezia” above.

March is Endometriosis Awareness Month, so I thought I’d highlight this complex and multifaceted condition.

Part of the problem in getting patients support is this list of signs and symptoms, which pan multiple medical specialties.

Here are some issues we’re having with diagnosis and treatment:

  • GPs gatekeeping specialist referrals
  • your or your doctors normalizing your issues
  • your symptoms might be somewhat managed by some strategy you’re using or hormonal contraception
  • you might not have a GP because you’re in Ontario and our healthcare system is being systematically eroded by our provincial government
  • endometriosis awareness is still low, especially in the family doc population
  • endometriosis cannot be diagnosed on ultrasound unless you have endometriomas or have someone who has highly specialized knowledge in ultrasound tech for endometriosis (like at McMaster University)
  • MRIs, which can help diagnose and map, have long wait times in Ontario
  • laparoscopy, which has been gold standard for diagnosing and removing lesions (especially excision surgery) is hard to get to because we have so few people who do it

What to do?

Complex multifaceted conditions require a multimodal approach. There are roles for diet and nutrition, supplementation, medication, physical modalities, acupuncture, surgery, and more.

Nutrition won’t “fix/cure” your endometriosis, but it is part of a holistic approach to endo. I have an Endometriosis Nutrition Guide you can download for free here.

Track your symptoms and your menstrual cycles together. Oftentimes, there will be cyclicity to your experience, especially severity and duration, which you can then communicate with your healthcare team. Feel free to reach out if you’re looking for ND support. Here’s a blog post from last year listing some common complementary therapies for endo.