Heavy periods and debilitating pain are not always ‘normal.’ In some cases, they may be signs of endometriosis.
Understanding the first signs and symptoms of endometriosis can make all the difference in advocating for better care and support from your healthcare provider.
Endometriosis is a common, yet often misdiagnosed, condition that affects approximately 1 in 10 people assigned female at birth of reproductive age.
The symptoms of endometriosis can vary greatly and are often mistaken for other health issues, which can make getting an accurate diagnosis a challenge.
People often mistake the early signs of endometriosis for period pain. Unfortunately, many medical professionals make the same mistake. It takes the average person about 7 years to be correctly diagnosed with the condition.
In this blog post, we will explore some of the most common first signs and symptoms of endometriosis in order to help raise awareness and support for anyone seeking a diagnosis and effective treatment.
This blog will cover:
What is endometriosis?
What are some of the first signs and symptoms of endometriosis
What are some of the less common symptoms of endometriosis?
How is endometriosis diagnosed?
What is endometriosis?
Endometriosis is a chronic health condition in which the tissue that usually lines the inside of the uterus (the endometrium) grows outside of the uterus, typically on other organs within the pelvis such as the ovaries, fallopian tubes, and the ligaments that support the uterus.
This displaced tissue continues to act as it would inside the uterus, responding to the hormonal changes of the menstrual cycle by thickening, breaking down, and bleeding.
However, because the tissue has no way to exit the body, it can cause inflammation, pain, and the development of scar tissue (adhesions).
The severity of symptoms can vary widely, but they may include painful periods, pain during sex, fertility problems, and fatigue.
It is estimated to affect 10% to 15% of individuals assigned female at birth of reproductive age, but the actual prevalence may be higher, as some with endometriosis may not experience symptoms or are misdiagnosed.
What are some of the first signs and symptoms of endometriosis?
Endometriosis can present differently in different people. Some people have no symptoms and only discover the condition if they have trouble getting pregnant. Others experience a great deal of pain.
Since endometriosis is a progressive condition, symptoms usually start off on the milder side and worsen over time.
Common signs and symptoms of endometriosis include:
Painful Periods (Dysmenorrhea)
How it may feel: This pain often begins a few days before menstruation starts and may continue through the duration of the period. Unlike regular menstrual cramps that some women experience, this pain can be much more intense and debilitating. It can be a deep, sharp, stabbing, or throbbing pain, often radiating to the lower back and pelvic region. It can manifest as a deep, gnawing pain, sometimes described as if something is pulling or tugging at the inner pelvic organs. The pain can also feel sharp, like a sudden, stabbing sensation. At times, it may radiate down the thighs or up towards the lower abdomen. The intensity can vary throughout the day, with occasional spikes that might be triggered by physical activity or even just by sitting or lying in a particular position. For some women, the pain can be so severe that it interferes with daily activities, leading to missed days of work or school.
Chronic Pelvic Pain
How it may feel: Chronic pelvic pain is a hallmark symptom of endometriosis. This pain is persistent and is not limited to the timing of the menstrual cycle. It can sometimes be described as a heavy, dull ache deep within the pelvis. Some women liken it to the sensation of carrying a weight or pressure in the pelvic region. At times, it may also manifest as sharp, intermittent pains.
Painful Intercourse (Dyspareunia)
How it may feel: Pain during or after sex is a common symptom. This pain can be sharp and stabbing, particularly during deep penetration. Some women also experience a deep aching sensation after intercourse that can persist for hours or even days.
Excessive Menstrual Bleeding
How it may feel: While this symptom is more about observation than feeling, women may notice their periods are heavier than usual or may experience intermenstrual bleeding (spotting between periods).
Bleeding or Spotting Between Periods
How it may feel: Spotting between periods can be unpredictable and vary in intensity. It might feel like a light flow, requiring just a liner, or can be more pronounced, necessitating the use of regular sanitary products. Physically, there might be accompanying cramps similar to period pains. Emotionally, unpredictable spotting can be stressful and anxiety-inducing, especially if it happens frequently or at inconvenient times.
Infertility
How it may feel: This symptom is more of an observed outcome. Some women only discover they have endometriosis after seeking medical advice for fertility problems. Emotionally, it can bring feelings of frustration, sadness, and inadequacy.
Digestive and Gastrointestinal Symptoms
How it may feel: Many women with endometriosis experience symptoms that mimic irritable bowel syndrome, such as bloating, diarrhea, constipation, and nausea. The bloating can feel like a painful swelling in the stomach, often referred to as "endo belly."
Fatigue
How it may feel: Persistent tiredness and lack of energy are common, even after a full night's sleep. This isn't just regular tiredness but a profound fatigue that can make daily tasks feel insurmountable.
Painful Urination During Your Period
How it may feel: Women with endometriosis may experience pain during urination, akin to a burning or stinging sensation, especially during menstruation. The pain can be sharp and sudden or may feel like a cramp. There might also be a sensation of "fullness" or pressure in the bowel or bladder area.
Painful Bowel Movements During Your Period
How it may feel: Pain during bowel movements can range from mild discomfort to severe cramping. It can feel like a sharp, stabbing pain, particularly when trying to pass a stool. Additionally, some women describe a sensation similar to food poisoning, with cramps that come in waves and intensify over time.
Chronic Pain in Your Lower Back
How it may feel: The lower back pain associated with endometriosis can feel similar to muscle strain but persists regardless of activity level or posture. It can be a constant, dull ache or intermittent sharp pains that seem to radiate down the legs.
Heavy or Long Periods
How it may feel: Menstrual flow that's heavier than usual can lead to a sensation of fullness or bloating in the pelvic region. The blood flow might be so heavy that it requires changing sanitary products more often than usual, sometimes as often as every 1-2 hours. Long periods, on the other hand, can be physically and emotionally draining. Instead of the usual 4-7 days, a woman might menstruate for more than a week, sometimes even longer. The prolonged bleeding can lead to symptoms of anemia, like fatigue, dizziness, and paleness.
Pain During Ovulation (Mittelschmerz)
How it may feel: Ovulatory pain, often called Mittelschmerz (a German term meaning "middle pain"), is a sharp, cramp-like pain felt on one side of the lower abdomen. It's linked to the release of an egg from the ovary. For women with endometriosis, this pain can be significantly intensified. While some might feel a mild twinge or aching sensation lasting a few minutes to a couple of hours, others might experience more severe, sharp, or stabbing pain that can last for one to two days. The pain might switch sides from one cycle to another, or it could occur on the same side for several cycles in succession. Some women also report accompanying symptoms, such as light vaginal bleeding or discharge, and heightened sensitivity in the region around the ovary that’s releasing an egg.
If you've got some of these symptoms, try out this quick screening quiz below to see if it's something that you may want to speak to your doctor about.
What are some of the less common symptoms of endometriosis?
Endometriosis primarily involves the ovaries, fallopian tubes, and the tissue lining the pelvis. In rare cases, however, endometrial tissue can spread beyond the pelvic organs. When endometriosis affects other organs, the symptoms can be quite varied and might not be immediately recognized as being related to endometriosis. Here are some less common symptoms that can arise when endo adheres to or infiltrates other organs:
Difficulty Breathing or Chest Pain
Cause: Thoracic endometriosis is when endometrial tissue is found in the thoracic region, which includes the lungs.
Symptoms: This can lead to catamenial pneumothorax (a lung collapse related to menstrual cycles), hemoptysis (coughing up blood), or chest pain. Difficulty breathing, especially if it's cyclical and appears around the menstrual period, can be a sign.
Abdominal and Flank Pain
Cause: Endometriosis affecting the urinary system, especially the bladder or ureters. The bladder is another organ in close proximity to the female reproductive system—and it’s another common place for endo to take a toll.
Bladder symptoms can also occur due to generalized inflammation in the pelvis from endometriosis.
Endo lesions on the bladder can lead to symptoms that closely mirror a urinary tract infection (UTI), including urinary urgency (that “I need to go now” feeling) and frequency, along with pain when peeing.
Symptoms: Symptoms can include painful urination, blood in the urine, and recurrent urinary tract infections.
Blood in Stool or Painful Bowel Movements
Cause: Intestinal or rectovaginal endometriosis. One recent study indicates that endometriosis can affect the bowels. Symptoms of this connection can be diarrhea and constipation.
Because endometriosis is an inflammatory disease, inflammation can irritate the bowel.
There can be scar tissue or adhesions from endometriosis that can cause narrowing of the bowel, and these can all lead to symptoms.
It is known that people with endo get referred first to a gastroenterologist because of bowel symptoms before endometriosis is even considered as a cause.
Symptoms: This can manifest as painful bowel movements, diarrhea, constipation, or even blood in the stool, especially during menstrual periods.
Shoulder Pain
Cause: This is often linked to diaphragmatic endometriosis, which occurs when endometrial tissue grows on or penetrates the diaphragm, the muscle that separates the chest cavity from the abdominal cavity.
How it may feel: The shoulder pain related to diaphragmatic endometriosis is often described as sharp, sometimes with a sudden onset, and can be more pronounced when taking deep breaths. The pain usually intensifies during menstruation. The sensation can be quite deep and is often referred to the shoulder due to the shared phrenic nerve between the diaphragm and the shoulder area.
Associated Symptoms: There might be difficulty breathing deeply, a feeling of tightness or pressure in the chest, or even referred pain in the upper abdominal area.
Navel Bleeding
Cause: This occurs from umbilical endometriosis, where endometrial tissue implants itself in the navel. It's a rare form of extrapelvic endometriosis.
How it may feel: The navel area can become swollen, tender, or even develop a nodule that might be painful to touch. This tenderness or the nodular growth can intensify during menstruation.
Associated Symptoms: Cyclical bleeding from the navel during menstrual periods is a hallmark sign. There might also be localized redness, itching, or even a burning sensation.
Coughing Up Blood
Cause: This is related to pulmonary or thoracic endometriosis, where endometrial tissue is found in the lung region. The exact cause of hemoptysis in these cases is not entirely clear but might be related to endometrial tissue bleeding during menstruation.
How it may feel: Women might experience a sudden, dry cough, sometimes with an associated sharp chest pain. Coughing up blood can be distressing; the blood can appear bright red and may be mixed with mucus. The amount of blood can vary but is typically scant and not profuse.
Associated Symptoms: Other symptoms of pulmonary endometriosis can include difficulty breathing, chest tightness, or even a recurrent collapsed lung (catamenial pneumothorax) that occurs in conjunction with menstrual cycles.
It's important to note that the presence of these symptoms doesn't automatically mean a person has endometriosis affecting these organs. Other medical conditions can cause similar symptoms. However, if someone with a diagnosis of endometriosis starts experiencing these unusual symptoms, especially if they're cyclical in nature (related to the menstrual cycle), it's vital to consult with a healthcare provider to get a thorough evaluation.
It can be difficult to determine exactly what symptoms are caused by endometriosis because it varies from person to person.
That wide range of experiences is exactly why people may not be aware they have endo—and why healthcare providers sometimes struggle to identify it.
So while it’s important to note that all these symptoms can have other potential causes aside from endometriosis, learning more about this chronic condition and advocating for a diagnosis will help you get access to better care, sooner.
How is endometriosis diagnosed?
The 'gold standard' for diagnosing endometriosis is by having a laparoscopy (keyhole surgery).
Endometriosis is usually classified in stages from minimal to severe, and your doctor is also likely to ask you questions about your periods, pain, and other symptoms.
Despite what many clinicians may say, it's not considered 'normal' to have severe period pain. Also, if the pain is so severe that you are missing school, work, or other activities, it's important to seek help.
If you think you have endometriosis, see your healthcare practitioner who can refer you to a specialist gynecologist. It is important not to delay seeing your doctor, as early diagnosis and treatment can reduce the severity of the disease.
It is also important to know that many only get a correct diagnosis for seven to 10 years because the symptoms can vary between individuals and can change over time.
At present, laparoscopy is the only method that is universally recognized by the medical community as a means of diagnosing endometriosis.
A laparoscopy is an operation performed under a general anesthetic in which a thin telescopic tube with a light (a laparoscope) is inserted into the abdomen through a cut in the belly button.
It allows the endometriosis specialist to see if there is any endometrial tissue within the pelvis.
There is a move towards more diagnoses being made without surgery, and treatment does not have to depend on surgery to proceed.
What to do if you think you have symptoms of endometriosis
The very first thing you can do is start to log your pain. Where on your body do you feel the pain? What does it feel like? Track this throughout the month and identify if there are specific moments or associative events, like your period, that you find the pain gets worse.
This is crucial information that you can use when advocating for a diagnosis when speaking to a healthcare provider.
It can feel very overwhelming to know where to start and how to advocate for yourself in a healthcare setting. That's what we can help with at ELANZA. Simply sign up for a subscription that gives you access to a dedicated Care Navigator who will build a personalized, step-by-step plan to getting you a diagnosis. Then, you'll get access to education from specialists along with digital classes like CBT and pelvic floor physical therapy that are known to help with managing pain, to help you while you wait for a diagnosis.
At ELANZA, our mission is to change the entire healthcare system around endometriosis. No gaslighting. No agenda. Just better care at a lower cost.