Most women have experienced some degree of pelvic pain in their lifetime. For many of us, we have had painful periods our whole life, and the periods are becoming more and more unbearable. Dysmenorrhea (or pain with periods) is such a common finding for women, so how do we know when our pain is beyond what is expected? Many women have already had their symptoms dismissed by a doctor leaving them to wonder if this is something they should just live with. But, could these painful periods be a sign of endometriosis?

We all know the symptoms of a heart attack, why are we still failing women in recognizing endometriosis as a cause of their pain? Why don’t we know the symptoms of an extremely common disease and why does it take a woman so long to get the diagnosis and start treatment for the relief of her symptoms?

According to the World Health Organization, endometriosis is a chronic condition that affects 10 percent or one in 10 women. Endometriosis is the most common cause of pelvic pain in reproductive-age women, but for many, the symptoms are not thought to be associated with endometriosis and are usually last to be considered as a diagnosis. Women often wait a very long time to receive this diagnosis and women worldwide are waiting upwards of 7-10 years to find out they have this. AWARENESS of endometriosis, the signs and symptoms are KEY and lead to early recognition.

The broad range of symptoms and a lack of awareness about how to recognize and treat the disease can prevent patients from getting help. There is no cure for endometriosis, but doctors and researchers are uncovering tools to manage the often-debilitating pain that comes with the disease. We now have better options to offer a woman and give her relief from her symptoms.

Endometriosis comes with a tangled knot of symptoms, many of which are characterized by extreme pain. The hallmark is progressive cyclic pain. This means the pain that occurs with your cycle becomes more and more painful. When you are young, your cycles are often not painful and this changes over time and your cycles can become more and more painful. If endometriosis is the cause, this eventually leads to pain outside of your cycles and can cause painful sex (dyspareunia). painful urination and bowel movements. Gastrointestinal disruptions, like painful diarrhea and constipation, which patients often confuse for signs of another health issue.

The problem with diagnosis lies in the fact that menstrual camps are the only pain that we have as humans that we accept as normal!! Unfortunately, this acceptance leaves many women sufferings and very few fully know why. The broad array of symptoms that occur with endometriosis frequently overlap with many other gynecological issues and there is a lack of awareness by both you, the patient, and your doctor.

So how does endometriosis occur? Through “retro menstruation” meaning blood flow occurs in the opposite direction and out of the fallopian tubes and tissue similar to the kind that lines the uterus, known as the endometrium, implants outside the uterus and in other areas of the pelvis like near bowl bladder and the ovaries. When someone with endometriosis has a period, the same hormones that cause the uterus to contract also activate the endometrium in the pelvis, which can lead to intense pain beyond the uterus. But the disorder also causes pain between periods. Endometriosis can block fallopian tubes, trapping blood in the ovaries to form fluid-filled cavities known as “chocolate cysts” (because they contain thick, brown liquid) or endometriomas. In rare cases, those cysts can rupture, causing sharp, intense aches. The disorder can also lead to adhesions, bands of scar tissue that cause organs to stick together.

So why does it take so long for women to get the diagnosis? While symptoms may be present, endometriosis does not show up in bloodwork, often your pelvic exam is normal and there may not be any indication on a pelvic ultrasound. Endometriomas or masses on the ovaries filled with old blood can be seen on ultrasound which can help in the diagnosis, but these are not always present. Superficial lesions are not seen on US or MRI. When you see nothing, it doesn’t mean something isn’t wrong. Sonograms are still helpful to rule out other causes and look for endometriomas.

So then, how is the diagnosis of endometriosis made? Clinically. We must suspect it as a cause. For years and years, the diagnosis of endometriosis was made if all other things had been ruled out or referred to as a diagnosis of exclusion. Meaning, it was the last thing to be considered if we couldn’t find any other cause. This truly leads to a delay in diagnosis.

What are the risk factors for developing endometriosis? Anything that increases menstrual flow. More flow means more retrograde menstruation. Other risk factors are smoking, and family history.

We know that this disease can have a huge impact on the quality of life for women, days of work may be missed due to symptoms, and young girls are sometimes held back from participating in sports, they can experience an increase in anxiety and depression due to the pain and can certainly impact a woman’s lifetime.

What are the favored treatment options? First-line therapies are over-the-counter pain medications, NSAIDs or ibuprofen, and oral combined contraceptive pills or progestin-only pills. Most women will achieve some relief with these treatments so always a good place to start. For more severe symptoms there are hormones like leupron and even newer effective oral medications like eragolix. Surgical treatment followed by hormone therapy has the greatest impact on symptoms.

Lifestyle changes, and meditation, can help with decreasing our response to pain: curcumin, while these can be helpful, can be harmful. St John’s Wart impacts the liver and how it metabolizes other drugs.

For the future: As we know endometriosis can impact a woman’s fertility, and IVF yields the highest pregnancy rate. Surgery improves a woman’s chance of conceiving but not by much in fact 12 surgeries lead to one successful pregnancy. Surgery does, however, improve a woman’s pain. If an endometrioma is present, the removal of this will increase the chances of conceiving.

We need to avoid the delay in diagnosis and still need better diagnostic studies. Wouldn’t it be nice if there was a marker, we could detect in a woman’s blood that would tell us the diagnosis? For now, awareness is key. Women need to dismiss the idea that pain is normal and speak up about their symptoms and make their doctors aware that endometriosis should be considered! Start the treatment and get relief.

Remember, YOU get to decide how bad your pain is and if it is becoming worse and worse with each cycle, then you should be wondering if this is endometriosis!