Endometriosis is when tissue that’s similar to the lining of your uterus (endometrium) grows in other places in your body. It’s estimated that
Living with endometriosis can be difficult. First, the condition is often difficult for doctors to diagnose and treat. Second, symptoms like pain, digestive problems, and infertility can significantly impact your quality of life.
Keep reading as we explore what it’s like to live with endometriosis and offer tips for coping.
It can take anywhere from 4 to 11 years from the time your symptoms begin until you’re actually diagnosed with endometriosis. But why does it take this long?
The symptoms of endometriosis can be vague and can also overlap with those of other health conditions. This means that endometriosis may initially be misdiagnosed as something else, such as:
- primary dysmenorrhea
- ovarian cysts
- uterine fibroids
- irritable bowel syndrome
- inflammatory bowel disease
- pelvic inflammatory disease
- irritable bladder
- musculoskeletal problems
- mental health disorders like anxiety or depression
A lack of awareness about endometriosis and its effects can also contribute to delays in diagnosis. Because of this, it’s possible that a doctor may not consider endometriosis when trying to diagnose your symptoms.
A 2020 survey study found that many women reported having 20 or more conversations with their doctor about their symptoms before receiving their diagnosis. If you suspect that you have endometriosis, it’s vital to find a doctor who listens to your concerns and takes steps to do a full assessment for endometriosis.
There are also several harmful effects of a delayed endometriosis diagnosis, including:
- distress or anxiety due to experiencing symptoms for months or years without a clear diagnosis
- acceptance of your symptoms as “normal” in the context of your menstrual cycle
- stigma from others who may believe that you’re exaggerating or being too sensitive
- feelings of isolation or anger due to doctors or others not understanding what you’re going through
Receiving a diagnosis can provide you with relief and an idea of how to treat your symptoms. It can also help to resolve misunderstandings from others about your symptoms.
Once endometriosis is diagnosed, it can also be a struggle to find an effective treatment. While frustrating, it’s important to be patient and work closely with your doctor to find a treatment strategy that works for you.
The most common symptom of endometriosis is pain. This happens because endometrial tissue bleeds in the same way as the uterine lining each month. However, it has no place to leave the body, leading to inflammation and pain.
The level of pain that you’ll feel varies greatly. Some may feel no pain or only mild pain, while others may have severe pain that disrupts their daily life. Pain from endometriosis can also manifest in others ways, such as:
- painful menstrual cramps
- pain during or after sex
- chronic pain in the pelvis or lower back
- gastrointestinal pain
- pain while going to the bathroom during your period
Treating endometriosis pain
Because pain is the predominant symptom of endometriosis, most treatments center on relieving this symptom. Examples of treatment options include:
- Hormonal contraceptives. The use of hormonal contraceptives like the birth control pill or a hormonal intrauterine device (IUD) can help alleviate symptoms like pain and bleeding.
- Gonadotropin-releasing hormone (GnRH) agonists. GnRH agonists stop the body from making hormones that are important for the menstrual cycle, introducing a temporary menopause. They can help control the growth of endometrial tissue, easing symptoms like pain.
- Over-the-counter (OTC) medications. OTC medications may help with mild endometriosis pain. A few examples include ibuprofen (Advil, Motrin), naproxen (Aleve), and acetaminophen (Tylenol).
- Complementary and alternative medicine (CAM). Although additional research is needed on how effective they are, some people report feeling relief from CAM therapies like acupuncture, massage, or herbs and supplements.
- Surgery. Surgery is typically only used for severe endometriosis pain and involves locating and removing areas of endometriosis tissue.
Many women with endometriosis use a combination of treatment strategies. However, what works for one person may not work for another. It’s likely that you’ll need to try different treatments before you find relief.
In addition to physical symptoms, endometriosis can touch your life in a variety of other ways, including:
- Mental health. Endometriosis can affect mental health in some of the following ways:
- The process of getting a diagnosis and finding an effective treatment can be emotionally taxing.
- Some people with endometriosis can experience anxiety or dread about their symptoms, particularly as it gets close to the time of their period.
- Not feeling understood or feeling hopeless can lead to feelings of depression.
- Fatigue. Endometriosis itself can cause fatigue and disrupted sleep, but it can also lead to fatigue in other ways. For example, keeping up with your treatment regimen and medical appointments in addition to your daily activities can be draining.
- Financial. The costs of medical appointments for endometriosis treatments can add up over time. Additionally, severe endometriosis symptoms can interfere with your ability to balance or maintain a job.
- Social. You may sometimes end up canceling plans due to your symptoms, which may strain relationships with family or friends who don’t understand.
- Stigma. It’s possible that women with endometriosis may have to deal with negative perceptions of the condition from other people in their lives.
- Sex. Some women with endometriosis experience pain during or after sex. This can lower a woman’s desire to have sex, potentially leading to misunderstandings with a partner who feels frustrated or rejected.
- Fertility. Having endometriosis can affect your ability to get pregnant. In fact, it’s estimated that
halfof women experiencing infertility have endometriosis.
Coping with endometriosis can be both physically and emotionally draining. Some of these tips may help:
Adjust your diet
The effects of diet on endometriosis are still being investigated by researchers. However, eating certain types of foods while avoiding others may help reduce inflammation and pain due to endometriosis. Some examples are:
- fresh fruits and vegetables
- whole grains
- nuts and seeds
- fatty fish, such as salmon and herring
Foods that may negatively impact people with endometriosis include:
- high-FODMAP foods, such as dairy, beans, and onions
- red meat
- foods that contain:
There are many different ways to reduce stress. You might need to try a few different methods before you find some that are effective for you. Examples include:
- getting exercise
- doing yoga
- engaging in a hobby that you enjoy
- going for a walk outside
- reading a book
- listening to calming music
- taking a warm bath
- trying meditation, breathing techniques, or aromatherapy
People with endometriosis often have poor sleep quality. This can be due to physical symptoms, the stress related to managing endometriosis, or both.
- poorer quality of life
- an increase in depressive symptoms
- bladder pain
If you’re struggling to count sheep at night, there are methods to help you get better quality sleep:
- keep your bedroom dark, quiet, and a comfortable temperature
- set bedtimes and wake-up times and stick to them
- reduce the use of electronics close to bedtime, focusing instead on relaxing activities like reading a book or taking a warm bath
- limit naps during the day
- get regular exercise
- avoid caffeine and alcohol later in the day
- consider a melatonin supplement
While additional research into the impact of exercise on endometriosis is needed, getting regular exercise can benefit your overall health in several different ways. These include:
- improving cardiovascular health
- maintaining healthy muscles and bones
- reducing pain
- managing weight
- boosting energy levels
- lifting mood
- helping you to sleep better
Aim for at least 30 minutes of exercise most days of the week. If you’re unsure about where to start, ask a healthcare professional about an exercise routine that’s appropriate for you.
While endometriosis can be isolating, remember that you’re not alone. There are many ways to find support, including:
- telling loved ones what you’re thinking and feeling, and how they can best support you
- learning as much as you can about endometriosis, different treatment strategies, and recent research breakthroughs
- talking with a mental health professional to work through your feelings and emotions or to address symptoms of anxiety or depression
- joining a support group that meets either online or in person
Living with endometriosis can be an ongoing challenge. Diagnosis can take a long time due to vague symptoms or the lack of awareness of endometriosis. Additionally, you may need to try different treatment strategies to find what works best for you.
Endometriosis can also impact your life in other ways as well. For example, it can also affect your sex life, social life, and finances.
While this can feel overwhelming, there are effective ways to cope with endometriosis. These include things like finding a doctor who’s actively engaged in your treatment plan, seeking support, and reducing your stress levels.