If you missed it, you can read the previous post explaining the basics of endometriosis here. In this post, we’ll look a little more at how endometriosis is diagnosed as well as some current barriers to diagnosis.

Wait. So you’re telling me that killer cramps of doom aren’t normal? If I did suspect I had endo, how would I go about getting diagnosed?

Endometriosis diagnosis is a tricky thing in that there’s no in-office procedure that can definitively determine whether someone has the condition or not. However, because the “gold standard” test is laparoscopy with biopsy — a surgical procedure — many health care providers prefer to do some in-office tests before recommending laparoscopy. The most common such procedures are pelvic exams and ultrasounds, which may allow a provider to see or feel if the endometrial lesions have formed cysts (known as “endometriomas”), but won’t pick up on smaller lesions.

Another complicating factor is that endometriosis isn’t the only cause of either dysmenorrhea or chronic pelvic pain. Other causes can include uterine fibroids, pelvic floor dysfunction, pelvic inflammatory disease, irritable bowel syndrome, and interstitial cystitis.

Even with laparoscopy, diagnosis isn’t necessarily straightforward. Not only is it a surgical procedure, which carries with it extra expense and risk, but even then, presence of the disease is often missed or underestimated. Seeking out a doctor who specializes in endometriosis can minimize this, but of course, due to geographic, cost, or other access issues, this isn’t always possible.

Okay, so — I actually have spoken to my doctor about my periods before because they’re hellacious. I even brought up the possibility of endo, but my doc didn’t really take me seriously. Is there anything I can do about that?

Yes, this needs to be a real question in this post because it is a real experience in the lives of lots of people with endo. The figures associated with individual studies vary, but the delay between the onset of symptoms and diagnosis is approximately 8.5 years. Additionally, the delay trends longer for people who present with symptoms before the age of 20 and for people whose complaint is pain rather than infertility.

First, this can allow the endometrial lesions to grow unchecked, possibly creating scar tissue and/or sticking pelvic organs together in the process — both of which can make conception more difficult if and when that person chooses to conceive. Second, it’s just plain no good for someone to be in inadequately managed pain for years and years.

What follows is not professional advice, but rather a list of steps that a few of my friends (via online endo support communities) and I have found helpful in getting otherwise reluctant health care providers to take our concerns seriously, which ultimately facilitated diagnoses. I share this list not because I think any given item — or even all of them together — is a magic answer to make doctors listen, but rather because each one may help some, and they’re all unlikely to hurt.

• To the best of your ability, find a health care provider who is a respectful advocate for you. In a perfect world, this is someone who has particular expertise in managing pelvic pain, infertility, and endometriosis. But in the real world, a primary care provider who’s an ally — including those at Planned Parenthood health centers — can make a world of difference. Not only can a primary care provider offer some “first line” management options (those are coming, I promise) in the absence of a readily available specialist, but they can also act as a go-between between you and the specialist.
• Keep a diary. Not of your crushes or pictures of your lunch, but of potentially endo-related symptoms. When I kept mine, it included length and heaviness of period; intensity, location, and quality of pain; side effects of pain or activities I’m unable to do because of pain (e.g., pain that leaves me curled up in the fetal position on the couch); and what remedies (over-the-counter or prescription) I’ve already tried to alleviate pain. Not only can it help demonstrate to doubting doctors that this is a serious and ongoing problem, but it can also be a tool to help all providers diagnose and treat most effectively and efficiently.
• Bring an advocate. For some people, having an additional person — friend, family member, partner — in the room to advocate for you can help make sure your concerns are appropriately addressed. This can be especially true for providers who tend to doubt their patients’ experiences of pain or to think those patients are exaggerating (sadly, they do exist).

This is not to suggest that every person who experiences chronic, significant pelvic pain has endometriosis. As noted, there are a number of other potential causes of the same symptoms. Similarly, not every person, regardless of cause, will encounter resistance getting their symptoms diagnosed. However, it remains a real, widespread, and frustrating problem with respect to endometriosis diagnosis.

Next time, in the final installment of this series, we’ll look at endo treatment and management options, both for pain and for infertility.