Endometriosis affects 1 in 10 women in the US. African-American women are particularly vulnerable. Some of the symptoms are heavy bleeding, long and irregular periods, debilitating pain and infertility. These symptoms are caused by the lining of the uterus traveling elsewhere in the body and attaching to other organs. There is currently no cure for endometriosis and science still hasn’t come up with a reason as to why it happens – although there are many theories.
Currently a woman will see an average of 8 doctors over a 10 year timespan before even getting a diagnosis. During this time she is not offered support or treatment options. Recently, Daysy launched a clinical study to discover if basal body temperature data – the kind of data tracked, stored, and analyzed by the Daysy fertility monitor – might be an early indicator of endometriosis. A goal for Daysy’s clinical study would be to discover a new way of diagnosing endometriosis that could be used by women and their doctors. It is our hope that this would help women avoid years of misdiagnosis. If basal body temperature (or BBT) is an indicator of endometriosis, women might also avoid the surgical intervention currently required for diagnosis.
Daysy talked to Shannon Cohn, the director of “Endo What?” – an excellent new documentary all about endometriosis and the state of diagnosis and treatment options available to women today – to learn more.
How is a woman currently diagnosed with endometriosis?
Right now, the only way to definitively diagnose endometriosis is through laparoscopic surgery. Blood tests and any imaging tests like CATSCANS, MRIs and ultrasounds may only suggest the possibility, but that is all. They cannot diagnose endometriosis. Even if the possibility is not suggested by imaging, one should remember that absence of evidence is not evidence of absence.
Are there any issues with the current method for diagnosis?
There are many. First, surgery is obviously an invasive procedure and many women are reluctant to have it. Further, it’s expensive. Thirdly, the vast majority of surgeons, even gynecological surgeons, are neither well-educated nor well-trained in recognition & effective treatment of endometriosis. I’ve heard countless cases of women who underwent surgery with their local OBGYN and were told no endometriosis was found only to learn later from an endometriosis expert they had extensive disease.
The problem is that for decades medical text books have taught that endo lesions are black lesions in the pelvis. In reality, endometriosis can have many appearances and may be blue, red, clear or fibrotic. Beyond that, most surgeons perform ablation surgery, where only the surface of the lesion is burned. Research proves that excision surgery is the gold standard for treating endometriosis. Excision means the surgeon cuts out the endometriosis lesions rather than burning the surface of them.
Why does it take more than 7 years for a woman to receive diagnosis, on average?
For many of the reasons alluded to above – lack of knowledge and access to accurate information, both for health care providers and patients. Most people believe that the only symptom of endometriosis is painful periods. In fact, it’s incredibly common for women to have GI symptoms, urinary symptoms, fatigue, migraines and several other symptoms in addition to pain. Also, the pain could be during one’s period, during ovulation or continuously throughout the month. Every woman’s symptoms are different.
Do you feel there is adequate research into endometriosis? If not, why not?
We certainly need more research into endometriosis, especially translational research that improves the lives and health outcomes of women sooner rather than later. Progress in endometriosis research is held back not only by lack diagnostic tools and biomarkers, but a lack of very large numbers of study participants. With large numbers we can hopefully begin to see the patterns evident in other disease processes like breast cancer. Recognition of these patterns has been very helpful in tailoring various treatments specific to the type of disease.
What single thing would most improve the lives of endometriosis sufferers?
It’s hard to specify one single thing as each woman’s experience with endometriosis is unique. However, if we had targeted non-hormonal, non-invasive treatments, it would make an enormous difference in a woman’s quality of life. The negative side effects of current medical treatments are not only awful, but can be quite dangerous.
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If you’re a Daysy user you can take part in our clinical study. Simply fill out the questionnaire that allows access to your BBT data. You do not have to have endometriosis to participate.
Here are the links for:
Click here to learn more about the importance of your participation.
Photo credit ThrowBackmag.com