Endometriosis is a painful and often misunderstood condition that affects millions of women worldwide.
Despite its prevalence, many people still do not fully understand the impact that endometriosis can have on a woman's daily life.
Endometriosis pain is often dismissed as "just menstrual cramps," but for those who suffer from the condition, the pain can be debilitating and affect every aspect of their lives.
In this blog, we will explore the causes, symptoms, diagnosis, and treatment options for endometriosis, as well as the impact of the condition on career, relationships, and fertility.
We will also discuss the importance of raising awareness about endometriosis and advocating for better care and support for those who live with this chronic condition.
What this blog covers:
What is endometriosis
Understanding endometriosis
Common misconceptions about period pain
The severity of endometriosis pain
Pain management techniques
NOTE: At ELANZA, we believe that when it comes to endometriosis, there is not a best or only choice about which treatment options to pursue, there is just the solution that works for you. There are important considerations around every treatment plan and our single mission is to provide evidence and options so that anyone with endo has the ability to advocate for themselves and to make informed decisions about their care. We have no vested interest in any single treatment plan (i.e. surgery, medication, etc.). Our mission is to improve access to specialist care, whatever that entails.
What is endometriosis
Endometriosis is a medical condition that affects the tissue that normally lines the inside of the uterus (the endometrium), which grows outside of the uterus in other parts of the body.
This misplaced tissue can grow on the ovaries, fallopian tubes, bowel, bladder, and other pelvic organs.
In endometriosis, this tissue acts similarly to the normal endometrium.
However, unlike the normal endometrium, this tissue has no way to leave the body, so it can cause inflammation, pain, and scarring in affected areas.
Endometriosis is a chronic condition that affects women of reproductive age, and it can cause a range of symptoms, including pelvic pain, painful periods, painful intercourse, infertility, and fatigue.
There is no cure for endometriosis, but there are various treatment options available to manage the symptoms and improve quality of life.
“Despite its high prevalence and cost, endometriosis remains underfunded and underresearched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options.” - American Journal of Obstetrics and Gynecology (AJOG)
Prevalence of endometriosis
According to estimates, endometriosis affects approximately 10% of women of reproductive age, which is around 190 million women globally.
However, it can be difficult to estimate the exact prevalence of endometriosis due to variations in diagnostic criteria and the fact that many women with the condition may not seek medical attention or may go undiagnosed.
Endometriosis can also affect women post-menopause, although it is much less common, with estimates around 5%.
Overall, endometriosis is a relatively common condition that can have a significant impact on a woman's physical and emotional well-being, highlighting the need for increased awareness, research, and treatment options.
Understanding endometriosis
Definition and causes
Endometriosis is a medical condition in which the tissue that normally lines the inside of the uterus (the endometrium) grows outside of the uterus.
This tissue can grow on the ovaries, fallopian tubes, bowel, bladder, and other pelvic organs.
In endometriosis, this tissue acts like the normal endometrium - it thickens, breaks down, and bleeds with each menstrual cycle.
However, unlike the normal endometrium, this tissue has no way to leave the body, so it can cause inflammation, pain, and scarring in affected areas.
The exact cause of endometriosis is not known, but there are several theories.
One theory is called retrograde menstruation. According to this theory, menstrual blood and endometrial cells flow back through the fallopian tubes and into the pelvic cavity instead of leaving the body through the vagina during a woman's period.
These cells can then implant and grow outside the uterus.
Other theories include genetic factors, immune system dysfunction, and the possibility that endometrial cells may travel to other parts of the body through the bloodstream or lymphatic system.
Common symptoms and signs of endometriosis
Endometriosis can cause a range of symptoms, and the severity of symptoms can vary widely from person-to-person.
Some women with endometriosis may have no symptoms, while others may experience significant pain and other symptoms that can interfere with daily life.
The most common symptoms of endometriosis include:
Pelvic pain: including severe menstrual cramps, pain during intercourse, and chronic pelvic pain.
Abnormal bleeding: including heavy menstrual bleeding, irregular bleeding, or bleeding between periods.
Infertility: endometriosis can cause scarring and adhesions in the pelvic area, which can make it difficult for sperm to reach and fertilize an egg. It’s believed that up to 50% of infertility cases are due to endometriosis.
Gastrointestinal issues: such as bloating, constipation, diarrhea, or nausea, especially during menstruation.
Fatigue: due to the chronic pain and inflammation associated with endometriosis.
Other possible symptoms of endometriosis include lower back pain, pain with urination, pain with bowel movements, and painful bladder syndrome.
It is important to note that some with endometriosis may have no symptoms at all, which can make diagnosis more difficult.
If you are experiencing any of these symptoms or suspect you may have endometriosis, it is important to speak with a healthcare provider.
Uncommon signs and symptoms of endometriosis
Because endometriosis can grow on the outside of your uterus, it can impede on other areas of your body such as your ovaries, bladder, intestines, bowels, even lungs. As this tissue grows, it starts to irritate things it touches, which causes pain and adhesions (scar tissue) on these organs.
Here are some of the lesser-known issues that may arise from endometriosis.
Lung collapse
In some people with endometriosis, the endometrium-like patches grow on or around the lungs. This can cause coughing, chest pain, shortness of breath and can be life threatening.
Complications can cause bleeding or a collapsed lung.
Thoracic endometriosis is rare, and it can be hard to identify. It can take up to 4 years to identify the condition.
Researchers do not fully understand what causes thoracic endometriosis, but they have several theories.
One explanation involves retrograde menstruation. This happens when menstrual blood travels backward through the fallopian tubes instead of flowing out of the body through the vagina. It then accumulates in the abdomen.
Experts theorize that when this happens, the menstrual blood mixes with endometriosis patches of tissue. This can cause more patches farther up in the abdominal cavity, such as near the lungs.
However, doctors do not fully understand why thoracic endometriosis happens.
On the other hand, many people experience retrograde menstruation and only a small percentage of them have endometriosis. So, the jury is still out on exactly how and why endo can reach the lungs.
Bowel endo
Bowel endometriosis - often misdiagnosed as irritable bowel syndrome (IBS) - occurs when lesions grow on the peritoneum of the intestines (the membrane lining the inside of the abdomen and covering the abdominal organs).
Bowel symptoms begin to appear during adolescent years.
According to Tamer Seckin, MD, a board-certified gynecologist and laparoscopic surgeon in private practice at Seckin Endometriosis Center in New York City and the cofounder of the Endometriosis Foundation of America, around 80% of adolescent patients have abdominal symptoms with periods: discomfort, gassiness, bloating, and diarrhea.
Some with bowel endometriosis might experience painful bowel movements, accompanied with pain during sex, as well as constipation, diarrhea, and bloating.
For some, symptoms may diminish as the disease progresses and adhesions wrap around and push pelvic organs together, leading to something called “frozen pelvis.”
But for others, these symptoms can still be pronounced even at late stages of the disease.
Headaches
Endometriosis can cause an imbalance of hormones, which can bring a cause a lot of different issues.
One of them is bad headaches, especially occurring during your period.
Usually, these headaches will lessen, or go away, when on the pill, as the hormones are regulated better.
Diagnosis and treatment options
Diagnosis of endometriosis usually begins with a detailed medical history and physical exam, including a pelvic exam.
Your healthcare provider may also order imaging tests such as ultrasound, MRI, or CT scan to look for signs of endometrial growths or scarring in the pelvic area.
A definitive diagnosis of endometriosis is usually made through laparoscopy, a minimally invasive surgical procedure in which a small camera is inserted into the abdomen to view the pelvic organs and take tissue samples for biopsy.
Treatment options for endometriosis depend on the severity of symptoms and may include:
Pain relief: Over-the-counter pain relievers such as ibuprofen or acetaminophen can help manage mild to moderate pain. Prescription pain medications may be needed for more severe pain.
Hormonal therapy: Hormonal medications such as birth control pills, progestins, or GnRH agonists can help regulate menstrual cycles and reduce pain associated with endometriosis.
Surgery: Laparoscopic surgery can be used to remove endometrial growths and scar tissue. In severe cases, a hysterectomy (removal of the uterus) may be recommended.
Alternative therapies: Some find relief from symptoms through complementary and alternative therapies such as acupuncture, yoga, or dietary changes.
It is important to note that there is currently no cure for endometriosis, and treatment is focused on managing symptoms and improving quality of life.
Those with endometriosis should work closely with their healthcare provider to find a treatment plan that works best for them.
Those with endometriosis can also benefit from a supportive healthcare team that includes providers who are knowledgeable about the condition and can provide compassionate care.
If you are living with endometriosis, it is important to seek out support and resources that can help you manage your symptoms and improve your quality of life.
There are many organizations and support groups dedicated to raising awareness about endometriosis and providing resources and support to women with the condition.
The painful reality
Endometriosis is a chronic and painful medical condition that can significantly impact your overall quality of life.
The pain associated with endometriosis can be debilitating, and it can interfere with daily activities such as work, school, and relationships.
The emotional toll of living with chronic pain can also be significant, leading to anxiety, depression, and other mental health concerns.
Despite the challenges of living with endometriosis, there is hope.
Common misconceptions about period pain
There are many misconceptions about period pain, which can lead to misunderstandings and even stigma surrounding menstrual health. Some common misconceptions about period pain include:
"Period pain is normal."
While mild menstrual cramps are common and may be considered normal, severe pain that interferes with daily activities is not normal and may be a sign of an underlying condition such as endometriosis or uterine fibroids.
"Period pain is just part of being a woman."
While it is true that many women experience menstrual pain, it is not a necessary or inevitable part of being a woman. Painful periods can be a sign of an underlying medical condition that requires treatment.
"Painful periods are just in your head."
This is a harmful and dismissive misconception that can prevent women from seeking treatment for their symptoms. Painful periods are a real and often debilitating condition that require medical attention.
"Period pain is always the same."
The severity and duration of menstrual pain can vary widely from woman-to-woman and even from cycle-to-cycle. It is important to pay attention to changes in menstrual pain and seek medical attention if pain becomes more severe or lasts longer than usual.
"There is nothing you can do about period pain."
While there is no cure for menstrual pain, there are many treatment options available to manage symptoms, including pain relievers, hormonal therapy, and surgery. It is important to work with a healthcare provider to find a treatment plan that works best for you.
By addressing these misconceptions and promoting a greater understanding of menstrual health, we can help reduce stigma and improve access to care for women experiencing menstrual pain.
Impact of pain on daily life
The impact of pain associated with endometriosis can be significant and can affect many aspects of daily life.
Chronic pain can interfere with the ability to work, attend school, care for family, and engage in social activities.
In addition to physical limitations, the emotional toll of living with chronic pain can also be significant and can lead to anxiety, depression, and other mental health concerns.
Those with endometriosis may need to take time off from work or school due to pain or other symptoms, which can affect their income and academic progress.
They may also need to make accommodations such as working from home or modifying their work schedule to manage their symptoms.
The pain associated with endometriosis can also affect relationships, as those with endo may need to cancel plans or decline social invitations due to pain.
This can lead to feelings of isolation and frustration, and can strain relationships with friends and family members.
How endometriosis can affect your relationships
Both partners may experience a wide range of emotions. In particular, those with endometriosis may experience feelings of frustration, guilt, low mood and irritability, while partners may experience worry, helplessness and frustration.
All couples need to work to support one another, but endometriosis may create additional support roles for partners.
These may include practical support (e.g. attending consultations together, helping to make treatment decisions, providing care after surgery or taking on additional everyday tasks) and emotional support (e.g. talking things through, listening, sympathising, etc.).
Some couples may find there is a mismatch between the support one partner needs and the support the other partner feels able to provide.
All couples and individuals will cope in different ways, but there are some things you might do to better cope with the impact of endometriosis on your relationship:
Communicating effectively is a key aspect of living with a long term condition. It is a good idea to set aside a specific time to sit and talk about your worries, frustrations and reflections.
Within your discussions ask: ‘how can I better support you? What do I do that is and isn’t helpful?’ Be prepared to listen to your partner, and to answer the questions yourself (it might be useful to think about how you want to answer these questions in advance of sitting down and talking with your partner).
If conflict arises, walk away, spend time alone calming down and revisit it another time.
Don’t expect your partner to mind read. Tell your partner how you feel and what support you need.
Extend kindness to yourself and your partner. Accept that endometriosis affects both partners (albeit differently).
How endometriosis can affect intimacy
Endometriosis develops when the tissue that grows inside your uterus begins to grow on your ovaries, bladder, or other nearby organs.
This means when you get your period, the tissue sheds just as it would if it were inside your uterus.
But without its typical means of leaving your body, the tissue stays inside and hardens into scars and cysts.
These scars are what cause dyspareunia, or pain during sex, as they move, contract, and extend.
And because nobody is the same, depending on how much scarring you have or how severe your endometriosis is, pain during penetrative sex can range from mild to severe and throbbing to acute.
How endometriosis can affect your career
About 40% of those with endometriosis report impaired career growth due to endometriosis, and about 50% experience a decreased ability to work due to their chronic disease.
Differentiated knowledge on the nature of such limitations and, in particular, on how adjustments to professional life can be made to improve professional performance is currently lacking.
The quality of working life is a major aspect in quality of life overall, which in turn is the most important predictor of total cost of disease.
About 66% to 75% of the total costs of endometriosis arise from reduced ability to work and not from direct costs of treatment.
Being able to work in a desired occupation may not only have a strong impact on your financial situation and on the perception of and attitude towards daily work, but can also be an important health factor.
Why a multidisciplinary approach is important for pain management of endo
Evidence around managing pain associated with endometriosis has shown that a multidisciplinary approach has the best results. A multidisciplinary approach means that multiple members of the healthcare team come together to collaborate to provide optimal care for you.
When it comes to endometriosis treatment, it’s important to involve various disciplines across the healthcare spectrum to achieve the best possible outcome.
Benefits of a multidisciplinary team when managing endometriosis
Draw in endo experts across different care areas to enhance the patient’s prospects and outcomes.
Physicians benefit from this approach as they are able to provide a better framework for decision-making on a collaborative level and implementation.
These aspects are particularly important when dealing with complex endometriosis cases. When several endo experts work together in unison, the benefits include cross-discipline learning, research, and review.
Who’s got your back? If you have or suspect you might have endometriosis, this is a very important question to ask yourself.
At ELANZA we are building a platform where you are in charge and totally in control of your care.
Sign up today to access our multi-disciplinary care platform to live your best life, while managing your endo your way.
While there is no one-size-fits-all approach to pain management, some techniques that may be helpful for women with endometriosis include:
Mental health support: Counseling, therapy, or other mental health services can help address the emotional toll of living with chronic pain. People often think of pain as a purely physical sensation. However, pain has biological, psychological and emotional factors.
Medical treatments, including medication, surgery, rehabilitation and physical therapy, may be helpful for treating chronic pain. Psychological treatments are also an important part of pain management.
Understanding and managing the thoughts, emotions and behaviors that accompany the discomfort can help you cope more effectively with your pain—and can actually reduce the intensity of your pain.
Emotional support: It is important for those with endometriosis to seek out support and resources to help them manage their symptoms and improve their quality of life. There are many organizations and support groups dedicated to raising awareness about endometriosis and providing resources and support to women with the condition.
Pain relievers: Over-the-counter pain relievers such as ibuprofen and naproxen can be effective in reducing menstrual pain associated with endometriosis.
Hormonal therapy: Hormonal therapy, such as birth control pills or progesterone therapy, can help regulate the menstrual cycle and reduce pain associated with endometriosis.
Physical therapy: Pelvic floor physical therapy can help relieve pain associated with endometriosis by reducing muscle tension and improving blood flow to the pelvic area.
Acupuncture: Acupuncture involves the insertion of thin needles into specific points on the body and can help relieve pain associated with endometriosis.
There’s no definitive answer to the question about acupuncture working for endometriosis. The closest answer would be that acupuncture could help some people deal with the discomfort of endometriosis, but more studies are necessary.
A 2011 article in the New England Journal of Medicine cited a trial that showed the efficacy of Japanese-style acupuncture for endometriosis-related pain. The article concluded that data from large, randomized, controlled trials is needed to confirm these findings.
A 2017 review of studies indicated that, although literature suggests that pain can be reduced with acupuncture, more studies with adherence to best clinical practices are needed.
A 2018 review of studies suggested that acupuncture improved symptom relief outcomes more than other complementary methods such as exercise, electrotherapy, and yoga.
Heat therapy: Applying a heating pad or taking a warm bath can help relax pelvic muscles and reduce pain associated with endometriosis.
Relaxation techniques: Techniques such as deep breathing, meditation, and yoga can help reduce stress and tension, which can worsen endometriosis pain.
Dietary changes: Eating a well-balanced diet that is rich in fruits, vegetables, whole grains, and lean protein can help reduce inflammation and improve overall health. Certain foods, such as those high in caffeine or sugar, may worsen endometriosis pain. Making dietary changes, such as reducing caffeine intake and eating a balanced diet, may help reduce pain.
“After tracking my symptoms, I found that my endo-related headaches and acne were tied to eating refined sugar, caffeine, and gluten. When I eliminate those from my diet and make sure to get plenty of exercise, I find that my symptoms are drastically reduced. But I do still have flare ups, so I still need to take ibuprofen and other pain medications when those happen.” - Katie, 32
Regular exercise: Exercise can help reduce stress, improve circulation, and relieve muscle tension, which can reduce pain associated with endometriosis. Low-impact exercises such as walking, swimming, and yoga may be especially helpful.
Sleep hygiene: Getting enough sleep is important for overall health and can help reduce stress and inflammation. Good sleep hygiene practices include going to bed and waking up at the same time every day, creating a relaxing sleep environment, and avoiding stimulating activities before bedtime.
Avoiding triggers: Certain foods or activities may worsen endometriosis pain, so avoiding these triggers can help reduce symptoms. Triggers may include caffeine, alcohol, and foods high in sugar or processed foods.
Self-care: Taking time for self-care, such as taking a relaxing bath, getting a massage, or engaging in a hobby, can help reduce stress and improve overall well-being.
It can take time to figure out what approaches work best for your symptoms, biology, and lifestyle.
You can get help from an ELANZA care navigator to build a custom plan for you or you can closely track your symptoms and see what works best.
It is important to note that lifestyle changes alone may not be sufficient to manage the symptoms of endometriosis, and those with the condition should work closely with their healthcare provider to develop a comprehensive treatment plan that includes medical treatments and pain management techniques in addition to lifestyle changes.