Endometriosis is a complex illness that can cause severe symptoms in many people. There’s an array of symptoms that can suggest Endometriosis, and if you feel these symptoms apply to you, they should be discussed with your medical practitioner.

Unfortunately, most doctors can’t identify the symptoms of Endometriosis, believe misinformation that is spread even in medical school or allow sexist bias to cloud their judgment. In reality, Endometriosis affects 10% of people born with a uterus. This disease is more common than diabetes or asthma, yet many doctors cannot recognize the symptoms or help their patients find the relief they need.

Endometriosis is one of the most common diseases and yet we know very little about it scientifically, there are limited treatment options, and a lack of public awareness around the disease.

When talking to your doctor about Endometriosis, I can’t stress enough how important it is to go in armed with knowledge. Knowledge is your power in that appointment. This includes information about Endometriosis, but should also be applied to your symptoms. Going to a doctor with written out symptoms and tracking your triggers can help you maintain your confidence and — hopefully — grab the attention of your doctor.

You’ve learned the basics, but there are still a few questions left to be answered. Namely, what is Endometriosis?

Definition

Endometriosis is a common, chronic (long-term) inflammatory condition, one that is also impacted by hormones. Endometriosis occurs when tissue similar to the lining of the uterus grows in other parts of the body.

The tissue that makes up Endometriosis looks similar to the lining of the uterus, or the endometrium, but it is not the endometrium. When doctors remove Endometriosis, they examine it under a microscope. They have compared Endometriosis and the endometrium at a microscopic level; while the tissue is similar, there are marked differences between the two.

The disease is far worse than even “killer menstrual cramps,” and can affect the whole body. The misplaced Endometriosis tissue can cause a host of problems for the patient. Endometriosis can cause pain, higher levels of inflammation, endometriomas, fibrosis, adhesions, organ dysfunction, loss of organs, and more. Endometriosis is listed by the NHS as one of the top 20 most painful conditions a person can experience.

While it is most commonly found in the pelvic cavity, there is growing evidence that “extra pelvic” Endometriosis is not as rare as it was once thought to be. In fact, Endometriosis of the diaphragm used to be considered extremely rare, however, medical advancements have shown that number to be closer to 10% of people with Endometriosis being affected by diaphragmatic Endometriosis.

Symptoms

If you have excruciating periods, all of this might sound fairly familiar. Debilitating cramps are never normal, even if you have always incredibly painful periods. Most of the Endo warriors I talk to were told their period pain was normal for years before getting a diagnosis. Period pain should never be normalized, especially when severe cramps are often signs of underlying conditions.

There are far more symptoms than debilitating period pains, though that is a hallmark of the disease. A list of some of the many symptoms of Endometriosis are as follows:

• Periods that keep you from school or work
• Period pain that cannot be relieved by over-the-counter medications
• Extreme bloating, often referred to as “Endo belly”
• Abdominal pain
• Comorbid auto-immune disorders
• Chronic or debilitating pelvic pain
• Leg pain, especially aching or burning in the inner thighs before the start of menstruation
• Periods that last longer than 4–5 days; if periods last for longer than 7 days, contact your doctor
• Pain with intercourse
• Allergies (especially to inflammatory foods such as gluten or dairy)
• Migraines, chronic headaches, and TMJ
• Chronic fatigue
• Lower back pain
• Bowel and digestive problems such as vomiting and alternating diarrhea and constipation
• Difficulty conceiving or even infertility

Wow! That is a long list! And that list is by no means exhaustive. The main symptoms of Endometriosis tend to be gastrointestinal and digestive issues, debilitating period pain, and difficulty getting or maintaining pregnancy.

While some people have pain only during their period, or even no pain at all, other people with Endometriosis have pain every single day. I personally suffer from pelvic pain as well as a variety of other symptoms every single day. The disease manifests very differently for each person.

Endometriosis is divided into stages based on the size, depth, and location of the Endometriosis lesions found. The stages range from Stage I to Stage IV. These stages pertain mostly to fertility and do not assess any other symptoms, including pain. This means that someone with Stage I Endometriosis can have more symptoms or higher pain levels than someone with Stage IV. Sometimes, people with Stage IV Endometriosis have no symptoms other than difficulty falling pregnant, and that’s how they learn about the disease.

No matter who you are or what stage of Endometriosis you have, the myriad of symptoms experienced is individual to each patient. All of the symptoms you experience are valid, no matter the stage of your disease.

Who gets the disease?

Anyone can be born with Endometriosis — yes, even men. Most Endometriosis is found in people who were born with a uterus, almost exclusively. People of all identities can have Endometriosis, including non-binary people, Trans men, and the rare Cis man. The cases of cis men are few and far between, so we are not going to spend too much time on them.

There are many potential risk factors for Endometriosis, though there is no definitive cause for the disease. In fact, there have been studies in which Endometriosis was found in fetuses, suggesting that the development of the disease happens before birth.

Even though we do not know what causes Endometriosis, some things are potential risk factors to developing, worsening, or early warning signs of Endometriosis. Some of these risk factors include:

• Alcohol and nicotine use
• Low body mass index
• Starting your period before the age of 12
• Higher, prolonged levels of estrogen
• One or more close relatives with Endometriosis (sister, mom, aunt, or cousin)
• Certain chemicals such as environmental dioxins and other pesticides

None of these risk factors will guarantee you have Endometriosis; avoiding all of these risk factors will not stop you from developing Endometriosis. With such limited research into the disease and its impact on people’s lives, there is little to no definitive research on this topic.

Diagnosis

There are very few ways to diagnose Endometriosis; actually, there is only one definitive way. Of course, that definitive method is neither easy nor affordable.

The only way to be officially diagnosed with Endometriosis is through laparoscopic surgery. Laparoscopic surgery is also known as keyhole surgery. A small camera is inserted through the belly button and gas expands the abdominal cavity so that the doctor can look for any lesions of Endometriosis.

When the doctor finds Endometriosis, they can excise the lesion and send it to a pathologist, who will then confirm or deny the presence of Endometriosis microscopically.

Many doctors try to put patients on medications and see if they respond well. If the patient does respond to the medication well, the doctor diagnoses the patient with Endometriosis. Unfortunately, many doctors even are unaware that those medications do not treat the disease and are disparaged by experts in the field; at the end of the day, these medications cannot accurately diagnose Endometriosis nor can they effectively treat the disease.

Treatment

Treating Endometriosis is somehow even more difficult than diagnosing the disease. There are very limited treatment options, and currently, there is no cure for the disease. While the treatment options are limited, they are still important to discuss.

As a preface to this section, whatever way you choose to treat your Endometriosis is up to you; never let anyone, including your doctor or online keyboard warriors, make you feel bad about the choices you have made to treat your disease. There is no wrong way to handle having Endometriosis, and above all I want you to get the treatment that works best for you. These options include:

• Birth Control
• Lupron/Orlissa
• Laparoscopic ablation
• Laparoscopic excision
• Pudendal nerve block
• Trigger point injections
• Pelvic floor physical therapy

Some doctors try to “treat” Endometriosis with different medications, from traditional birth control to Lupron or Orlissa. There are several problems with these treatment methods. Endometriosis makes its own hormones, including Estrogen, whether or not the ovaries are shut down by medications. This means that these medications can help mask symptoms for some, or work short term, but Endometriosis is aggressive and will quickly overpower even the strongest of hormone treatments. Pain often persists on the medication or progresses quickly as soon as the medication is stopped. These drugs, while they do not treat the lesions themselves, can help mask symptoms for some patients until they are able to have the lesions removed. Some of these drugs, mainly Lupron and Orlissa, can have serious side effects that should be researched and discussed with your doctor.

There are several forms of laparoscopies. Some laparoscopies are “diagnostic laparoscopies,” which means the surgeon is simply surveying what is happening in the abdomen. There are two kinds of surgeries used to treat Endometriosis: laparoscopic ablation and laparoscopic excision.

Laparoscopic ablation is when a surgeon cauterizes or burns the lesions of Endometriosis. This kind of surgery is considered by experts to be ineffective for most, although it is far more accessible than it’s counterpart. When the doctor only burns the lesion, rather than remove it, the Endometriosis cannot be confirmed histologically, under a microscope. The surgeon is also only burning the top of the lesion; some lesions are found deeper than 5 mm below the peritoneum. When there are deep lesions, the ablation method leaves much of the painful Endometriosis untouched and untreated. This surgical method can lead to unnecessary adhesions and ongoing pain.

Laparoscopic excision is seen as the “gold standard” of care for Endometriosis. Excision happens when a surgeon, who specializes in Endometriosis excision, meticulously cuts the lesion out and removes it at the root. While this is not a cure, excision surgery by an expert can lead to a significant reduction in pain, cessation of many other symptoms, sometimes spare fertility, improvement in the quality of life, and the lowest rate of recurrent disease. This surgery, while being the gold standard, is extremely expensive and there are less than 200 trained specialists to treat nearly 200 million patients.

All other methods of treatment simply manage symptoms or treatment co-morbidities. These things include but are not limited to, pelvic floor physical therapy, trigger point injections, and pudendal nerve blockers.

Endometriosis can be complex, lead to other ailments, and change a person’s quality of life. There is not nearly enough research or awareness about a disease that impacts so many people — 10% of people born with a uterus.

If you experience these symptoms, especially period pain that keeps you from normal activities, it is important to visit your doctor. On average, it can take 7–10 years to get diagnosed with Endometriosis. Patients often have to visit several doctors before getting validation and help with their symptoms, much less expert care. Seeking care for Endometriosis is important to your health and your future. More information, including information about qualified specialists, can be found at https://centerforendo.com/.