Endometriosis: What it is & why it’s so difficult to diagnose & treat

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Many women regularly experience or have experienced menstrual pain before. For some women, despite continuously seeking answers to explain this pain, their physician may not be able to easily determine the cause. 

Endometriosis, often a very painful disorder, is fairly common, but is extremely difficult to diagnose and treat. More than 5.5 million American women have symptoms of endometriosis, and it is estimated to affect approximately 10 percent of reproductive-aged women.

What is endometriosis?

Endometriosis is a condition in which tissue that normally lines the uterus, called the uterine lining, grows outside the uterus on other organs inside your body. Women with endometriosis often experience abdominal pain. Menstrual pain and irregularity are the most common symptoms.

Women should not experience pain that keeps them from work or regular activities, and yet so many do. Woman who experience consistent menstrual pain and irregularity should challenge their doctor to help find the cause of their pain. At SIU Medicine, the women’s health team says roughly 60 percent of its patients have pain, and 40 percent are trying to get pregnant.

Endometriosis can negatively impact a woman’s chances of becoming pregnant. Other signs and symptoms of endometriosis include pain with intercourse, pain with bowel movements or urination, excessive bleeding, infertility, fatigue and nausea.

There are four stages of endometriosis: minimal, mild, moderate, or severe. The stages represent how many cavities are affected by tissue growth. Endometriosis creates wounds and scar tissue all over your abdominal cavity. Stage 4 is where lesions cover the entire uterine cavity. They attach like glue and wrap themselves around other organs, your ureter or bowel.

Why is endometriosis difficult to diagnose?

The symptoms are general and so many women experience them, making endometriosis one of the most difficult conditions for doctors to diagnose.

It takes a laparoscopy from a specialist to confirm and officially diagnose endometriosis. A laparoscopy is a surgical procedure specialists use to view a woman’s reproductive organs.

Understandably, many women don’t want to have surgery for only a diagnosis. Endometriosis can look very similar to an ovarian cyst on imaging, so until a patient is in the operating room, physicians are unable to discern a true diagnosis.

While specialists may recommend imaging including an ultrasound or MRI, it is difficult to tell on imaging what is causing issues because we are examining soft tissues. Sometimes you can see some growth of an ovary, but it is difficult to see if it is endometriosis or a cyst.

Why is endometriosis difficult to treat?

Endometriosis is essentially “miracle grow” tissue and will continue to grow without treatment. Treatment options include surgery and hormone therapy. Physicians at SIU Medicine report that patients respond more positively after surgery. Hormone therapies are starting to come on the market to treat autoimmune diseases like endometriosis. Some patients have good response to drug therapy, while others may not.

The approach in which you and your doctor choose to treat your endometriosis will largely depend on how severe your signs and symptoms are. If left untreated, endometriosis can lead to infertility, continuous pelvic pain, back pain, as well as increased pain during intercourse, defecation, or urination.

What is SIU Medicine researching related to endometriosis?

At SIU Medicine, specialists with surgical expertise are located in central Illinois, where we are also actively researching solutions and treatments for endometriosis. SIU Medicine patients have access to clinical trials involved in advancing the research of endometriosis.

Endometriosis impacts your immune system, so SIU Medicine researchers are analyzing changes in patients’ immune system, and using that information as a diagnostic tool.

SIU Medicine is currently researching a process to identify certain microbes in women, which could then be used to diagnose endometriosis without invasive surgery, possibly even before symptoms start.

The biome is a very good sensor of inflammation, so you can give a swab instead of blood draw to diagnose. SIU Medicine researchers are currently comparing biome results with the surgery results to ensure patients would receive the same diagnosis based on the biome results.

Current SIU Medicine research is funded by the Endometriosis Foundation of America and received top recognition at the 2018 meeting of European Congress on Endometriosis. Learn more about research on endometriosis in this video on SIU Medicine's Facebook page. 

If you or a loved one has signs or symptoms of endometriosis, contact SIU Medicine today with your questions. Our team of specialists and other health professionals can help you access the latest advances in endometriosis diagnosis and treatment.

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