If you or anyone you know suffers from endometriosis, then you know that even just receiving a diagnosis is a tedious process.
Endometriosis is a disease where tissue similar to the endometrium (the healthy tissue that grows on the inside of the uterus) grows à l'extérieur of the uterus, often causing excessive bleeding, pelvic pain, and infertility. Endometriosis affects up to 1 in 10 women, yet takes, on average, close to ten years to be diagnosed. Many women spend years with debilitating pain or suffering from infertility before being told they may have endo—but even then, doctors can’t confirm it without a special procedure.
Fortunately, thanks to the work of pioneering researchers like Dr. Katherine Burns (whom I was fortunate to interview for this article), menstrual blood samples may someday prove to be a potential avenue for non-invasive diagnosis of endo.
How endometriosis is currently diagnosed
Endo can’t be detected on an ultrasound or pelvic exam because the thin lesions are below the resolution limits of standard imaging. Additionally, blood and urine tests are insufficient to detect endo. Right now, the only way for a woman to be officially diagnosed is under general anesthesia for a laparoscopic exam.
Le présent processus involves a specialized surgeon making small incisions in a woman’s abdomen and inflating it with carbon dioxide gas to create working space. The doctor will then insert a small camera to identify issue areas. Tissue is then extracted and biopsied to determine if it resembles that of the endometrium, which is the tissue meant to be inside a woman’s uterus. Only then can a woman receive a definitive diagnosis.
Most women with endo wait years for this, often because doctors suggest surface-level methods of symptom management over the invasive laparoscopic procedure. Even the leading OBGYN organizations instruct doctors to avoid laparoscopy because of its invasiveness, and push suppressive hormone therapies as the primary treatment option over an authentic diagnosis of endo [1]. Luckily, there are a few innovative researchers who are looking for another way.
Dr. Katherine Burns’s research on period blood
Dr. Katherine Burns, an associate professor at the Cincinnati College of Medicine, is one of a few researchers looking at menstrual blood samples as a potential avenue for non-invasive diagnosis of endo.
When a woman releases menstrual blood during her period, this blood also contains tissue and white blood cells that scientists believe may be able to determine whether or not she has endo. This blood has also been found to contain stem cells from the endometrium–a discovery made back in 2007 [2].
In an interview with me, Dr. Burns described the process of isolating white blood cells from the menstrual blood to find metamorphical changes that would distinguish them from those found in the control (i.e., non-endo period blood)—very similar to how abnormal cervical cells are evaluated in the pap smear process.
Dr. Burns proposed that a test like this could even follow the same procedure as the Cologuard (TM) test for colon cancer—an at-home sample collection kit could be used and mailed to a testing center. If a test like this were to become available, we would be able to “prevent women from having surgery and still know that they have an endometriosis diagnosis instead of a suspected diagnosis,” Burns said.
If a test like this were to become available, we would be able to “prevent women from having surgery and still know that they have an endometriosis diagnosis instead of a suspected diagnosis,” Burns said.
Lack of funding presents a major roadblock
Unfortunately, due to roadblocks in funding, Dr. Burns says she doesn’t know when a test like this would be available on the market. “Right now,” Burns says, “the funding rates at NIH and funding for women’s health are 30% lower than in previous years.” Existing research projects are stalled due to an influx of grant requests and a lack of funds to fulfill them. Because of this, researchers are unable to maintain their staff and students to carry out the research.
The grant process takes months, and often involves counting on merely three individuals’ preferences for a certain research project over another. “Research breakthroughs are what change medicine and make medicine better,” Dr. Burns says. Because of the lack of funding and grant approvals, “the discovery science is being limited … [making me] worry about what this is doing to move medicine forward in the US … we have to be able to do discovery science and explore to find new cures.”
In the absence of government funding, private sector biotech firms are stepping up
Luckily, some private sector companies are also exploring tests like this one. NextGen Jane (NGJ) is a Silicon Valley for-profit, private biotech company founded in 2014. It’s just one of a few small fem-tech startups that are racing to develop an at-home endo test.
NGJ has tried to bring publicity to their endeavor through their campaign soliciting volunteers to send in their menstrual samples. In a recent article from The Guardian, NGJ co-founder Ridhi Tariyal was said to have noted that their company has received enough samples to fine-tune its collection kit, and is on the pathway to confirming their testing approach works.
Unlocking the diagnostic potential of menstrual blood for other reproductive conditions
Other advocates have noted that this is just the tip of the iceberg for diagnoses that may be able to come out of menstrual blood testing. Other conditions like PCOS, fibroids, or endometrial cancers may one day be diagnosable via menstrual blood testing as well.
Dr. Burns, who suffered from endo herself years ago, has spoken publicly about her experience and how it brought her to her current research. When asked what she would tell a young girl suffering from endo symptoms who doesn’t know what to do next, she said: “Your symptoms are real and your pain is not normal. Advocate for yourself and keep going to doctors or people who will hear you.”
