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You may have heard of the debilitating period pain that occurs in endometriosis.
But endometriosis is a complex condition that goes far beyond the reproductive system. It can affect the body in ways you may never have imagined. There are many symptoms (such as chest pain, frequent urination, and heartburn to name a few) that may seem unrelated, but they are actually a part of this condition.
Read on to learn more about the often misunderstood endometriosis. By taking you deeper into the less obvious symptoms, we aim to empower you with information to help you successfully manage this condition.
What is endometriosis?
Your uterus is lined with tissue known as endometrial tissue. Each menstrual cycle, your body grows new tissue to prep for a fertilized egg.
But sometimes, this endometrial tissue sets up a home outside of your uterus. And this is what we call endometriosis.
This excess endometrial tissue can be found in the fallopian tubes, ovaries, bladder, abdomen, pelvic lining, and the tissue between the rectum and vagina.
It can also make its way to unexpected places such as your appendix, lungs, diaphragm, sciatic nerves, and even the lungs and the brain (in rare cases).
Why is this misplaced tissue a problem? Because it also responds to the hormones involved in your menstrual cycle. However, unlike your uterine lining that sheds every month, this misplaced tissue gets trapped, and that can lead to inflammation, pain, and scarring. Depending on its location, this can also manifest as symptoms that seem entirely unrelated to your menstrual cycle.
Let’s take a look at some of those symptoms. But first, let’s quickly go over the most common symptoms of endo.
What are the common symptoms of endometriosis?
TLDR: There’s no one-size-fits-all with this condition. But there are some common symptoms of endo to look for.
Chronic pelvic pain that increases during your period (Research shows that 29% of women with dysmenorrhea have endometriosis)
- Back pain that worsens during your period
- Abnormal, irregular, or heavy bleeding
- Bleeding between periods
- Pain during sex
- Pain while urinating
- Painful bowel movements
- Pain that interferes with daily life
- Fertility issues
And then there’s the 20-25% of women with endo that have no symptoms at all. This is called silent endometriosis.
Now you may be starting to see how this disease is a mystery. The symptoms are not always obvious, which can make diagnosis tricky.
Speaking of unclear symptoms, it’s time to look at uncommon symptoms of endo that can manifest in the body.
What are the uncommon symptoms of endometriosis?
Here, “uncommon” doesn’t mean symptoms that rarely happen. Rather, it means symptoms that haven’t been studied as much.
Urinary symptoms
Endo can affect the urinary tract in about 1% of women. And 85% of urinary tract endometriosis exists on the bladder. The symptoms of endometriosis get worse around your period and can be wildly frustrating.
Here’s what you may experience:
- Pain when you pee
- Feeling like you need to constantly pee
- Blood in your urine
- Leaking urine
- Frequent UTIs
All of these uncommon symptoms can make life more challenging and stressful.
Neuropathy
Studies show that in rare cases, endo may affect the nerves and cause neuropathy. This is when the nerves in your body get damaged.
It’s most commonly felt as numbness, tingling, burning, a pin-and-needles feeling, and pain in the leg.
Sciatica
Usually when you hear “sciatica,” you think of a back issue like a bulged disc. But did you know that endo can also cause this problem?
One study looked at a 24-year-old woman experiencing pain in her right hip and buttock. The pain increased during her period and ovulation. Eventually, it became chronic pain, making it nearly impossible for her to comfortably sit or lie down. Meds didn’t help, and doctors turned to an MRI that showed endometriosis on a nerve. This explained both her leg pain and her severe cramps.
We share this to show how endo can affect nerves beyond the pelvic cavity. This disease can pop up in unexpected areas of the body and lead to serious challenges.
Leg pain
A study found that 50% of women with endo reported leg pain around and during their period.
Why? Because most nerves to the legs pass through your pelvis. If one of these nerves passes close to the endometriosis tissue, it can irritate the nerve and manifest as leg pain. You could feel anything ranging from dull aches to throbbing pain.
Many women experience these “uncommon” symptoms, so you’re not alone.
Fatigue
We’ve all had those days where we’ve felt too tired to do anything. With endometriosis, this may be your norm. And it can get even worse right before or during your period.
This fatigue is both mental and physical, making simple tasks feel impossible. And it may be due to inflammation and hormonal fluctuations.
But there’s good news. Research shows that patients who experienced lesser endometrial pain and bleeding had less fatigue as well. This means that if you’re able to manage your endometriosis, you may see your energy levels return.
Heartburn
You may be surprised to hear that heartburn can be a symptom of endo. One study found that women with endo are 25% more likely to get heartburn and indigestion.
Further research looked at the connection between endo and heartburn. It found that this fire in your stomach may be endometrial tissue on your bowels. This can irritate your digestive system, which equals acid reflux and heartburn.
It could also be thanks to chronic inflammation, which is common for endo patients. This inflammation can affect your gut and cause indigestion. And it may explain why 2.3% of study participants with heartburn had endometriosis.
Other studies have shown a genetic link between endometriosis and gastrointestinal issues.
Thoracic symptoms
The most common place to find endometrial tissue outside of the abdomen is in your chest (thoracic) cavity. Unexpected, right? This can give rise to symptoms such as shortness of breath, chest pain, and even coughing up blood.
Endo in the chest can rub the lining of your lungs and diaphragm the wrong way. This causes tightness and severe pain as well as issues with the nerves in your chest. You’ll find this pain is worse around your menstruation, right before you ovulate, and even post-sex.
However, not everyone with endometriosis will experience these thoracic symptoms. In fact, many have no symptoms at all.
Random (referred) pain
Referred pain is when pain feels like it’s coming from one place, but the root is actually elsewhere.
This can happen with endometriosis. It may feel like the endo pain is coming from your pelvic floor. But it could really be rooted in your ovaries.
This happens because endometriosis can cause issues in the communication between your nerves. It may send pain signals from the wrong place.
Other symptoms
Though not reported in many studies, there are other anecdotal symptoms of endometriosis that patients experience.
They include:
- Inflamed and bleeding gums
- Shoulder pain
- Vertigo
- Flu-like symptoms
- Itchy skin
- Migraines
Many (but not all) women experience symptoms with endometriosis. And as you can see, the symptoms can vary greatly. They go beyond the expected pelvic pain.
So, understanding the extent and spectrum of symptoms is the first step to improving life with endometriosis.
What happens if endometriosis is left untreated?
The handling of endometriosis is a very personal decision. Some patients opt for treatment, while others would rather not. There’s no wrong answer – there’s only what’s right for you and your unique situation.
Just know that, if left untreated, endo can affect fertility. It can also cause your pain to worsen and put a damper on your quality of life. You may also experience ovarian cysts and issues with urination.
Treating endo can help reduce the chances of these issues. Talk with a healthcare professional about how to manage your endometriosis.
The key takeaway
Endometriosis is more than period pain. It can affect nearly every system in your body.
So if you experience symptoms that aren’t related to your reproductive system or are cyclical and correspond with your period, talk to your doctor.
With early diagnosis and treatment, you can manage your endo symptoms. This helps increase your chances of fertility.
In review:
- Endometriosis is a disease where the endometrial tissue similar to that in your uterine lining grows outside your uterus.
- Endo affects 1 in 10 women.
- Symptoms of this condition vary a lot from person to person.
- The most common symptoms of endo are pelvic pain, abdominal pain, back pain, irregular or heavy bleeding, pain during sex, painful urination, painful bowel movements, and fertility struggles.
- Uncommon symptoms (less studied) include urinary issues, neuropathy, sciatica, leg pain, fatigue, heartburn, thoracic symptoms, and referred pain.
- Early diagnosis and treatment can help with the management of this disease.
- If left untreated, endometriosis can result in infertility and other issues.
FAQs
Endometriosis is not fatal. So while stage 4 may be more intense in terms of pain and other symptoms, life expectancy is normal.
Adenomyosis is sometimes confused with endo. Adenomyosis is a condition in which the inner endometrial lining grows in the muscular wall of the uterus. Both adenomyosis and endo can be painful, but endo is more likely to cause fertility issues.
The symptoms of endo vary greatly. Some women don’t experience any at all. Other women experience period abnormalities. And others find that endo can greatly affect their quality of life. Severe unmanaged endo can interfere with daily activities (especially during your bleed), and leave you debilitated. The chronic inflammation that goes along with endo can cause other issues and affect fertility, too.
Deep infiltrative endometriosis (DIE) is a very rare form of this disease. It affects about 1-5% of patients with endo.
It happens when endometrial tissues get into reproductive organs, other organs, and/or tissue deep in the body.
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