What Is Endometriosis? Living With Chronic Illness
- R. A. Fletcher
- Jan 20
- 8 min read
Updated: Jan 26
When I talk to people about endometriosis, most people are either intimately familiar with it, have a vague idea, or have no clue. Those who have a vague idea generally respond with the question, “Isn’t that just, like, painful periods or something?”
Or something…
I was diagnosed with Endometriosis when I was 15 years old, but I struggled with symptoms since I was 11. And I’m not alone. According to recent studies by Johns Hopkins and other research organizations, up to 10% of women have endometriosis, but not all of them know it. Endometriosis does not always show up as pain, but it always comes with a whole host of symptoms that impact daily living.
According to the American Medical Association, it can take up to 11 years for women to receive a diagnosis, with most women waiting at least four years. Even now, after decades of research, it is estimated that only 60% of cases are diagnosed.
But what is Endometriosis? Man, if I could sum it up in a single sentence, I would. But the fact of the matter is, it is an extremely complex condition that is still a mystery in many ways. Ultimately, it is defined as a chronic condition with multiple causes that results in the endometrium (the lining of the uterus) growing or traveling to parts of the body outside the uterus. It may not sound so bad on the surface, after all, people live with lipomas and cysts that grow in random areas of the body without it impacting their life, but the reality is much worse.
Where Can Endometriosis Grow?
Endometriosis is characterized mainly by lesions of endometrial tissue. During the menstrual cycle, the lesions can bleed and become sticky. This also creates scar tissue and inflammation. Women may also have polyps or fibroids inside the uterus.
Endometriosis generally grows in the pelvic region, with the lesions attached to the uterus and ovaries, but that’s not the only place it can be found. Other organs that may be impacted include the fallopian tubes, bowel, rectum, bladder, and kidneys.
There are recorded cases of endometriosis in the diaphragm, lungs, and thoracic cavity, which can cause difficulty breathing and, in severe cases, collapsed lungs.
In very rare cases, endometriosis has been found in the brain. This usually causes issues with cognitive function. It may also cause seizures.
The Research Behind Endometriosis
Before we dive into the symptoms and management of endometriosis, I think it is important for anyone living with endo, or supporting someone who has endo, to become familiar with the research and science behind it. First of all, research on Endometriosis is relatively new in the field of medicine, even though there are cases of the condition dating back to ancient times.
Early Research
As early as 1690, doctors were studying the condition, but research only went as far as the discovery and cataloging of symptoms of pain and infertility. For the next few hundred years, doctors argued about how the condition worked, but no real treatments were found.
In 1927, Endometriosis finally received its name from Dr. John A. Sampson. Treatments finally began to emerge, but they were… less than ideal. From electrocautery (burning away the tissue) to hysterectomy (removing the uterus and ovaries), women underwent excruciating procedures. Later, it was discovered that endometriosis is not limited to the ovaries. When scientists confirmed that it can cause kidney damage as well, they also realized that a hysterectomy did not always resolve symptoms.
Breakthrough In Diagnostics
By the late 1950s, even though the condition had a name, it was still severely misdiagnosed. Most women were diagnosed with STDs or mental illness long before doctors even considered Endometriosis. By the 1970s, however, laparoscopic procedures were refined and became the standard for diagnosis, which is still used today. The process involves surgically inserting a camera into the abdomen to search for lesions. Still, it wasn’t until 1989, after the first laparoscopic hysterectomy was performed by Dr. Reich, that research really began to take off. This surgery finally presented a way to combat the fatal potential of living with or removing endometriosis.
Modern Testing and Treatments
Even though treatments were finally being developed that didn’t leave women mutilated or worse, the understanding of what endometriosis really is was still a mystery. I am one of the unlucky women who started my diagnosis journey before there was any legitimate support or understanding for the condition. I experienced my first symptoms in 2006 and received my diagnosis in 2010. To put it into perspective, the Endometriosis Foundation of America was founded in 2009.
Since then, research has flourished, and new diagnostic methods and treatment options are announced every year. Women have been suffering from this debilitating disease for thousands of years. Finally, we have the support to find understanding and treatment options that aren’t life-threatening. Still, there is no official consensus about what causes endo or long-term care options, but progress is being made every day. When I was first diagnosed, there was no medication that could help. The only treatment recommendations were surgical or birth control (neither ever worked for me). That changed in 2018, when the FDA approved Elagolix for endometriosis pain relief.
Classification
Endometriosis is currently considered a debilitating, inflammatory, chronic pain condition. However, there is a lot of interest in the classification, with some scientists debating whether or not it should be considered an autoimmune disease. It is accepted that having endometriosis increases the risk of having other autoimmune disorders. Research is still ongoing.
There are four classifications of Endometriosis, but the stage does not indicate the severity of the pain:
Stage 1: minimal endometriosis with implants (tissue) but no significant adhesions.
Stage 2: superficial implants with adhesions less than 5 cm.
Stage 3: multiple implants that are deeply impacted with adhesions spreading beyond the ovaries. Cysts may also be present.
Stage 4: Severe endometriosis with multiple deeply impacted implants, large cysts on both ovaries, and dense adhesions.
For now, here’s what having an endometriosis diagnosis means professionally and legally:
Be prepared to miss work or school during endo flare-ups.
Endo is not recognized as a disability by the Americans with Disabilities Act (ADA) or the Social Security Administration (SSA), but persistent, severe symptoms can sometimes be approved for legal disability status. You will likely need the help of a professional to achieve this.
You can not serve in the military. If you were in the military when you received a diagnosis, you will likely be medically discharged and placed on VA disability.
Endometriosis Is So Much More Than Painful Periods
I’m going to be bold and direct here, so bear with me–it’s not all bad. Endometriosis has no cure. If you have a diagnosis, you will spend the rest of your life on the lookout for the following symptoms. But you don’t have to suffer through them every day. There are treatments that make it more or less feasible to live a normal, healthy life.
Is it me? Or is it the endo?
Unfortunately, endometriosis can take as much of a toll on mental health as it can on physical health. Most women experience changes in their relationships and pushback from family, friends, or even doctors about their symptoms. Too many women have shared that at some point, they were either told or they believed that the pain was all in their head.
It’s not in your head! It’s the endo. By now, you know that there is much more to endo than just pain. But how much more? Let’s take a look at the very real endometriosis symptoms. Note, this is not an all-inclusive list. Symptoms related specifically to endometriosis in the thoracic cavity or brain are not included on this list.
Painful Periods
Yes. One of the first and most prevalent symptoms is painful periods. It affects all women differently. Some women have periods that are more painful than the average menstrual cycle, but manageable with over-the-counter pain medication. Other women struggle to get out of bed. When I felt severe endo pain for the first time, I passed out.
Pain During… Everything…
The pain is not limited to the menstrual cycle. During a flare-up, everything can be painful. Sex, bowel movements, and even urinating. The pain can also radiate beyond the pelvis into the back and legs. In cases where thoracic endometriosis is present, pain can extend to the chest and shoulders.
There is no correlation between the stage of the disease and the severity of pain. Some women don’t even know they have endometriosis until they find out they have issues with infertility. Other women, like me, have pain so severe that I would categorize child labour (not delivery) as a 7 on my “worst pain” chart. Endo reaches a 10 regularly.
Excessive Or Abnormal Bleeding
Most women with endometriosis have periods that are much heavier than average, which can lead to issues with anemia and fatigue. To put this one in perspective, it might get a bit personal. I use a Diva cup that is designed for heavy periods. It is supposed to last for 8 to 12 hours. On a normal cycle for me, it is full after 2 or 3 hours on my heavy day (which can be one day in a three-day cycle or up to three days of a seven-day cycle every 2 to 4 weeks).
I went to the hospital for blood loss once when I was filling the cup every 30 minutes to an hour. My husband said I lost all color in my skin, but I just remember feeling sick and seeing spots.
Nausea
Whether it comes from the pain or the hormonal imbalance, many women experience severe nausea and vomiting during flare-ups.
Neuropathy
The inflammation and scar tissue can cause damage to the nerves. Many women report having issues with numbness in the hands and feet or pain that shoots down the legs or up the back. It is not uncommon for women to also suffer from sciatica.
Endo Fog
There isn’t an agreement as to why endo fog happens, but it is a recorded and recognized symptom. Endo fog is a type of brain fog that may or may not happen during periods of fatigue. Women may have difficulty focusing, remembering things, or staying motivated. Often it feels like being on autopilot. Holding a conversation may be difficult, or you may feel as though you're watching yourself going through the motions.
Infertility
Up to 50% of women with Endometriosis experience infertility. While some are able to overcome these challenges with changes to diet and hormone therapy, other women are unable to carry children.
Chronic Fatigue
Some women experience fatigue during their menstrual cycle, but in some cases, the fatigue can become chronic. This can be brought on by physical stress and inflammation, mental exhaustion, or hormonal changes.
Digestion Disruptions
Inflammation in the pelvic cavity can cause digestive disruptions, namely, diarrhea. While this isn’t generally a persistent problem, it can worsen during flare-ups. The combination of the inflammation and diarrhea can cause intense pain.
Ovarian Cysts
Women commonly develop cysts on their ovaries called "chocolate cysts." They can vary in size and density. They are usually filled with blood or other fluid that can cause spotting if the cyst bursts. They are almost as painful as endometriosis, but pain is usually associated with a burst cyst, and it fades within a few hours.
If the pain persists, go to the Emergency Room. Bursting cysts can flip your ovaries over your fallopian tubes, cutting off the flow of blood.
Rare, But Real, Symptoms
In rare cases where endometriosis is in the thoracic cavity or in the brain, women may experience any of the following symptoms:
Difficulty breathing, especially during menstruation
Collapsed lung(s)
Migraines
Seizures
I couldn't tell you how rare these symptoms really are, because they generally remain undiagnosed, even after the initial diagnosis. I have experienced respiratory difficulties, migraines, and seizures. Despite my efforts in pursuing a diagnosis of these conditions, it has never been confirmed whether they are connected or not. Since changing my diet, I have not had recurring symptoms.
Finding Treatment For Endometriosis
Understanding what endometriosis is and what symptoms to pay attention to is the first step in understanding how to seek treatment. Start by consulting with your OBGYN to discuss medications, hormone treatments, or lifestyle changes that may be right for you. Never agree to something you are uncomfortable with. There are always other options; you may just have to search a little for them. But that's why The Endo Diet is here.
No matter what treatment plan you choose, it is a good idea to take the time to examine your diet and physical wellness routine. There are some foods you should be avoiding and some foods you should be adding to your diet to maintain a relatively healthy lifestyle. Regular exercise and physical recovery are also important.
Comments