Endometriosis: Causes, symptoms, diagnosis & treatment

What is endometriosis?

Endometriosis is a chronic inflammatory condition, which means that it is long-lasting and can impact people for much of their lives. It affects an estimated 1 in 10 women of reproductive age [1]. For context, this is as common as diabetes in the United Kingdom. The condition itself is characterized by the growth of tissue similar to the lining of the uterus (womb) outside of this area [2]. Although this tissue is most commonly found around the pelvis on the bowels, bladder, or rectum in women with endometriosis, it can be found all over the body and, in rare cases, in locations such as the lungs [3]. 

The endometriosis lesions (tissue) respond to hormonal changes throughout the menstrual cycle similarly to the womb lining, which cause the tissue to grow [4]. Now you know what endometriosis is, you might be wondering, what causes this complex condition? 

What causes endometriosis?

Whilst there isn’t a single cause of endometriosis, there are some theories as to what causes the condition, such as:

• Retrograde menstruation: During your period, some of the womb lining that would typically leave the body through the vagina actually flows backward, through the fallopian tubes, and into the abdomen. This tissue then implants around the abdomen and continues to respond to hormones in this area. This theory doesn’t explain certain cases of endometriosis, however, and most people who menstruate will, at some point, experience retrograde menstruation and not develop endometriosis [5]. 
• Genetics: Research suggests that there is a significant genetic component to endometriosis, meaning that if a close relative has endometriosis, you may be more likely to have it [6].
• Immune system dysfunction: It is believed that for some, the immune system may not be strong enough to “fight off” endometriosis. However, it isn’t clear whether this contributes to the development of endometriosis or occurs as a result of having the condition [7].

What are the risk factors for endometriosis?

There isn’t anything that can prevent endometriosis, but there are some factors which may increase the risk of developing the condition. 

• Early onset of menstruation (i.e., menarche, when you first get your period)
• Short menstrual cycles
• Long and heavy periods
• Reproductive tract abnormalities [8]

How is endometriosis diagnosed?

Traditionally, getting a diagnosis of endometriosis has been a lengthy and invasive process, and there are a few routes to diagnosing the condition, including: 

• Surgery: Laparoscopic, aka ‘key-hole”, surgery has long been the “gold standard” for endometriosis diagnosis. The surgery involves a small incision being made in the abdomen. A small tube and a camera will be inserted into the pelvis to investigate and visualize any disease [5].
• Imaging:  There have been some exciting developments on the use of imaging (i.e. MRI and transvaginal ultrasound) to diagnose endometriosis. As a non-invasive method, imaging can be used to diagnose endometriosis but is most effective for deep infiltrating endometriosis. It is important to note that even if an imaging test comes back negative for endometriosis, it is still possible that there is some disease that wasn’t picked up, especially if it is within the abdominal cavity [9].

For some, being diagnosed with endometriosis can provide a feeling of ‘relief’, especially if you have been suffering for years without a diagnosis. If you have surgery to diagnose endometriosis and doctors don’t find signs of disease, it’s important to know that your symptoms and your experience are still valid. You deserve to have your experience taken seriously and your symptoms managed, with a diagnosis of endometriosis or not.

What are the symptoms of endometriosis?

Endometriosis is a complex condition. There are many possible symptoms that could impact someone with an endometriosis diagnosis [2]. Some of the most common symptoms associated with endometriosis are pain and fertility challenges. It is important, however, to note that not everyone who has endometriosis will experience these symptoms, and it’s estimated that up to 25% of those with endometriosis will be asymptomatic (have no symptoms at all) [10]. Additionally, the amount of endometriosis disease found in the body does not correspond to the severity of symptoms experienced. Let’s take a closer look at some of the different kinds of symptoms.

Pain-related symptoms

Some of the most common symptoms associated with endometriosis are pain-related. This can include (but is not limited to):

• Pain during your period (dysmenorrhea)
• Chronic pelvic pain
• Pain during sex (dyspareunia) 
• Pain when you poo or pee
• Pain outside of the pelvis [2]

Those with endometriosis can also experience endometriosis-related ovulation pain. Ovulation is the time during a menstrual cycle when the egg is released from an ovary. Women who ovulate can experience some pain or discomfort during this time of the menstrual cycle, however, those with endometriosis may be more likely to experience more severe pain due, in part, to the location inflammation caused by hormonal changes during this time [11].

Endometriosis is also considered a chronic overlapping pain condition — a cluster of pain conditions that commonly happen at the same time — such as irritable bowel syndrome, fibromyalgia, migraine, and low back pain, to name a few [12]. Being diagnosed with one of these pain conditions increases the likelihood of being diagnosed with one of the others. If your day-to-day life is impacted by pain, with an endometriosis diagnosis or not, it's important to seek support from your healthcare provider. Though pain is very common, especially among women, it's not normal and should be investigated by a healthcare provider. 

Impact on fertility 

It is estimated that 30-50% of women with endometriosis will experience infertility [10]. There are many factors which may contribute to this infertility, some of which include:

• Changes to pelvic anatomy caused by endometriosis lesions
• Hormonal and cellular-level changes in the womb lining
• Abnormalities in the endocrine system or ovulation

Though infertility is common in those with endometriosis and depends on the severity of the condition, most women will be able to conceive naturally, without additional medical intervention [13]. If you have concerns about conceiving with an endometriosis diagnosis, we recommend seeking support from a healthcare provider.

Other symptoms

There are a number of other symptoms associated with endometriosis that can’t be categorized as relating to pain or fertility. These include;

• Heavy bleeding during your periods: If you need to change your pad or tampon every 1 to 2 hours or find that you are bleeding through your clothes, this is a sign that your periods are heavy [14]

• Mental health challenges: those with an endometriosis diagnosis are more likely to experience mental health challenges and have diagnoses of conditions like anxiety and depression [15]. If you are struggling with your mental health because of your endometriosis or the symptoms you experience because of it, you’re not alone. 

Support for endometriosis

Endometriosis, though common, can be an isolating experience. It is important to know that there is support available. Below we’ve suggested some helpful people and resources to look into if you’re struggling with endometriosis.

• Healthcare provider: Reach out to your doctor for help with managing the condition, whether through pain medication, talking therapy, or simply by getting a diagnosis 
• Community support groups: Talking to others who share similar experiences can be a helpful way to feel connected
• Friends and loved ones: Talk to your nearest and dearest about the condition and discuss ways in which they can support you
• Online forums and groups: Creating a network of online support can be another useful way to reach others who are in a similar situation

If you suspect you have endometriosis or have any/some of the symptoms listed above, we recommend you contact your healthcare provider as a first step to discuss these in more detail.

Treatment for endometriosis

As endometriosis is a chronic condition, there is no cure. However, there are some treatment options available that can help to manage the disease and its associated symptoms. Since endometriosis can present very differently for individuals, there is no one-size-fits-all treatment approach, and a process of trial and error or a combination of treatment options may be best suited to your needs. To determine the best treatment plan for you and your endometriosis, you should consult with your endometriosis specialist or healthcare provider. Here are a few options to be aware of:

• Hormonal treatment:  Often the first line treatment for endometriosis, hormonal contraception is prescribed to reduce estrogen levels and slow the growth of endometriosis tissue. These hormones can suppress ovulation and can stop your periods or make periods lighter. There are many different hormones that could be prescribed; your doctor will be able to advise on the best option for you [16]. 
• Surgery: In some cases, if the endometriosis tissue is widespread or deeply infiltrating, you and your healthcare provider may decide that surgery is a suitable treatment option. Surgery may sound like a scary option, so we encourage you to ask any questions about the procedure and why this option is best in your consultations [17]. 
• Pain medications: Over the counter pain medications, like ibuprofen, may help to relieve your pain. If these options are ineffective, your doctor may be able to prescribe a stronger pain management option [16]. 
• Non-hormonal treatment options: In consultation with your health care provider, you may wish to explore non-hormonal treatment options. This could include pelvic physiotherapy, a TENS machine [18], or soothing heat packs.

When should I see a doctor about endometriosis?

Although many of us are used to living life in pain, it’s not normal, and you deserve to have your concerns taken seriously by your healthcare provider. If you experience any of the following, we recommend speaking with a healthcare provider to get the support you need:

• You are experiencing bothersome symptoms that prevent you from doing day-to-day activities in a way you’d want to
• You suspect you may have endometriosis
• You have a diagnosis of endometriosis, and you’ve noticed changes in your symptoms

Know your body better with Natural Cycles

We hope you’ve learned something about endometriosis and how it can affect your reproductive health! Knowing your menstrual cycle can help you to recognize any changes or patterns across your menstrual cycle that may indicate something isn’t right. Natural Cycles, the first FDA Cleared birth control app is a hormone-free way to prevent pregnancy and also makes it easy to track changes and notice patterns across your menstrual cycles. The app even includes a downloadable cycle report that you can share directly with your doctor, making it easy to document and discuss symptoms.

If you’re interested in finding out more about your cycle, why not try Natural Cycles? It’s FDA Cleared, 100% hormone-free, and personalized to your unique cycle.