Is Endometriosis a Disability? Here’s My Hot Take

If you have endometriosis, the symptoms and pain can be incapacitating and excruciating at times. This might make you feel that you have an endometriosis disability, but the question remains: is endometriosis a disability? In the medical world, endo isn’t considered a disability, which can feel disheartening to those struggling with the symptoms caused by this disease. It also complicates access to support that someone with a recognized disability may be able to access through local programs or insurance coverage.  

Even though endometriosis isn’t formally classified as a disability, you can still experience debilitating pain from it if not managed! Much of this falls on misdiagnosis and feeling dismissed by doctors when all you want is to find relief and answers (trust me, I know exactly how this feels!)  

First, let’s go over why it’s so hard to find endometriosis specialists to diagnose your condition. Then we’ll look at common symptoms that may point to endo along with support and relief. I’m here to help you along the way endobabe!   

The Difficulty of Finding Endometriosis Specialists for Diagnosis 

The reason why many people ask the question, “Is endometriosis a disability?” is because of how much it can affect day-to-day life. There might be days when you can’t go to work or school because your endo pain is unbearable. The unfortunate truth is that many endowarriors feel unseen and experience symptoms that go undiagnosed.  

We all deserve to put a name to our symptoms. As someone who has endo and suffered for 15 years without answers, finding endometriosis specialists near me provided my endo diagnosis to prove it wasn’t “all in my head.” The problem is that endometriosis specialists are few and far between. It’s not unheard of that many endo sufferers travel abroad or to different parts within their countries to find support.

The only definite diagnosis can be made by visually detecting endometriosis with a laparoscopy or excision surgery. And many doctors simply don’t have the expertise to perform these procedures and diagnose your endo. With no cure for endo, there’s still a lot unknown, and not enough medical professionals dedicated to thinking outside the box to relieve your symptoms.   

What Symptoms Are Common with Endometriosis? 

Some people experience pain only with periods, and others have pain that continues throughout the month. Your symptoms and pain might get worse during your period, which can be a telltale sign of endo. A common misconception about endo is that it only affects your pelvic area. It’s important to understand that endometriosis is a condition that affects your entire body. 

Let’s unpack some of the most common symptoms of endo:  

Pain with Menstruation 

This isn’t your everyday cramping from periods. Think severe stabbing pain accompanied by lower back, leg and abdominal pain. This is where doctors tend to write off endo pain as just regular menstrual pain when you know it’s definitely not!  

Heavy Bleeding 

When is a period considered too heavy? If your bleeding lasts longer than seven days, you’re going through pads and tampons in an hour or less, you’re losing more than 80mL a period and you’re passing blood clots the size of a quarter or larger. Especially paired with painful periods, this can be a sign of endo (or adenomyosis).   

Painful and Irregular Bowel Movements 

Many endowarriors also deal with symptoms of irritable bowel syndrome, which can often be misdiagnosed as such. It’s not 100% clear why endo causes painful or irregular bowel movements, but it could be caused by lesions near or on the rectum that may put pressure against it, dysbiosis in the small or large bowel, or inflammatory prostaglandins acting on the smooth muscles of the bowels.   

Nausea or Vomiting 

You might notice these symptoms during your period or after eating. Intense pain and inflammation in the body can lead to nausea. Adhesions near your bowel are thought to also contribute to nausea and vomiting. Imbalances in the small or large bowel, slowed transit time caused by inflammation or upper GI infections like helicobacter pylori can also contribute to nausea and/or vomiting. 

Bloating or Endo Belly 

Since endometriosis can also irritate the intestines (with an overgrowth of bacteria, inflammation, etc.), you may notice increased gas and bloating. This isn’t just any basic bloating—it can cause severe pain in your abdomen or stomach. It’s also referred to as an “endo belly” from a noticeable belly sticking out due to the bloating.  

Fatigue 

We already know endo causes inflammation in the body, but did you know that a chemical called cytokine is released as your body tries to restore balance? This chemical is known to help our immune system fight the good fight, but it can also cause endometriosis fatigue.  

Infertility 

While many women with endometriosis have no issues getting pregnant, there are others who struggle with infertility. Inflammation in the body due to endo can prevent the full function of eggs, sperm, embryos, and fallopian tubes. Many endobabes also struggle with other conditions, such as hypothyroidism, PCOS, or other autoimmune diseases that contribute to infertility.   

Pain During Sex 

Endometriosis can cause hard nodules to form on and around pelvic organs such as the cervix (I had a massive one removed from my cervix in 2018, which helped immensely!). These nodules can become stretched or pulled during intercourse, which can cause sex to be painful. Irritated tissue from inflammation and scarring can also have a similar effect during penetration. Recurring antibiotic use can drastically alter the microbiome in the vagina, which can lead to recurring bacterial vaginosis or yeast infections. While not the root cause for pain with sex, these infections can make sex uncomfortable.     

Anxiety and Depression 

Beyond physical pain, many endowarriors deal with anxiety and depression, especially when they’re constantly in pain without answers about what’s wrong with them (or how to manage and alleviate the pain.) This is why finding the support you need is crucial to manage your endo! 

Finding Support and Relief for Your Endometriosis  

So, is endometriosis a disability? According to the healthcare system, no. But don’t let this diminish your very real experience of having an endometriosis disability that affects your daily life, if that’s the case. Speak to your healthcare provider for options to help if endo interferes with your livelihood or taking care of your basic needs. Some people feel that their endo is severe enough to be debilitating, so always advocate for yourself! 

Whether or not you put a disability label on endo, it’s still a disease and a painful one at that! The first step is getting that diagnosis to give you reassurance the symptoms are due to endo. Then, you can take control of your health by finding doctors or other healthcare providers who will listen to your needs and provide support. This could be through diet, exercise, bioidentical hormone support, medications, physical therapy, taking supplements, and more.  

Through my own journey with endometriosis, I’ve created the resources and tools to help you through (and hopefully alleviate) those painful symptoms of endo. If you feel ready to take control of your health and find a better way to manage your endo, book a FREE discovery call with me, and let’s chat about how I can help!