The 5 top endometriosis myths and misinterpretations stem from a lack of awareness. Affecting 176 million women worldwide, endometriosis is at the top of the list for common illnesses; however, it is the most unknown of its kind. A majority of the women diagnosed with endometriosis are unaware of its existence until they are diagnosed. Only 200 endometriosis specialists exist worldwide despite 1 in 10 women suffering from endometriosis.
Endometriosis is an inflammatory condition in which the immune system is commonly overactive. Tissue, like endometrium inside the uterus, is found outside the womb typically in the pelvis. It grows on the ligaments behind the uterus, vagina, and rectum. It may grow on the bladder, appendix, and even in the upper abdomen or abdominal wall in the scars from a previous surgery. Symptoms include, but are not limited to, painful periods, back pain, sciatic pain, irregular periods, heavy bleeding, fatigue, insomnia, bloating, nausea, infertility, and pain during sex. Not every symptom is present in every diagnostic case of endometriosis making it difficult for doctors to properly diagnose a patient.
Without endometriosis awareness, it is easy for confusion to arise. Misinterpreting information and formulating myths is a part of the diagnostic acceptance. It is important to research the disease and ensure any confusion is cleared up. Separating myth from fact helps doctors treat the chronic illness.
Ultrasounds can Diagnose Endometriosis
Endometriosis cannot be diagnosed through an ultrasound as the lesions have no real mass. The lesions tend to have a specific color; however, an ultrasound is printed in black and white and cannot pick up the pigments. Endometriosis does not alway stay in the pelvis, but will embed into the bladder, bowel, and ligaments behind the uterus.
A laparoscopy is the only way to properly diagnose a patient with endometriosis. During surgery, a long, thin camera is inserted in the abdomen through a small incision. This allows the doctor to view tissues and remove any abnormal cysts, implants, or scar tissue caused by endometriosis. The surgery is a non-invasive procedure typically performed under anesthesia, and patients tend to be released in one day.
Pain is Normal
Menstrual cycles are normally uncomfortable. Women often experience a small level of cramping and pain with menstruation, but experiencing high levels of debilitating pain during menstruation preventing the completion of regular day-to-day tasks is not normal and is a sign of an underlying issue.
Speaking up about endometriosis and the pain to someone who does not understand the illness is tough. A common misconception is women who complain have a low pain tolerance. Even gynecologists have told their patients the pain was in their head when hearing about their symptoms. There is a big difference between the “normal” pain and cramping of a typical period and the extreme pain of endometriosis. Endometriosis can leave an individual incapacitated, immobile, and they are unable to stand-up straight. A lot of the time women vomit or pass out due to the pain.
Through the journey of living with endometriosis, womens’ pain is not taken as seriously as it should. Gender bias against female patients is a common issue, as men are treated for pain quicker than women. In the emergency room, men are treated quicker than women. Women are also only given low sedatives for their pain that do not work after waiting over 60 minutes; whereas, men can receive painkillers after a 40-minute wait. Medical gaslighting is running rampant due to gender bias in healthcare. Gaslighting can lead to the pain and fears being experienced to be ignored, suppressed, misdiagnosed, or dismissed.
It takes an average of nine years for endometriosis to be diagnosed after symptoms start. For many, it takes a lot longer. It is important to know your body and ensure the symptoms are being listened to. If you are experiencing severe pain during menstruation, seek out help from a doctor who takes the symptoms seriously. Spreading awareness of this condition will help future diagnosis and treatments to become quicker and readily available.
Pain from endometriosis does not return only during menstruation. Endometriosis pain can occur anytime due to a number of reasons. It can cause pain during or after sex, during internal examinations, ovulation, and bladder or bowel movements. Flare-ups are fairly common for endometriosis patients, causing the stomach to bloat rapidly. A flare-up takes the invisible illness and gives it definition as a patient can look up to nine months pregnant making this much worse than “normal” period bloating. Experiencing a flare-up can happen at any time during a month with no warning. They can last for days, weeks, months, and sometimes years. Reasons for flare-ups range from stress, weather, hormones, and certain food to no reason at all.
Endometriosis is When Endometrium Grows Outside of the Uterus
Sources will say endometriosis occurs when endometrium, the lining inside the uterus, grows outside of the uterus; however, endometriosis is when tissue similar to the lining of the uterus is found growing outside of the womb. Usually, the tissue stays in the pelvis, but it can grow anywhere. The tissues are similar in structure but the same. This is the reason a hysterectomy and hormone treatments typically do not solve endometriosis and can only provide a temporary pain management.
Hysterectomy or Pregnancy will Cure Endometriosis
There is no known cure for endometriosis, but there are possible ways to manage symptoms. Every person experiences different symptoms and pain levels, making solutions difficult. Hysterectomies tend to provide a last-resort treatment option for women whose symptoms pose a threat even after hormone therapies or less invasive surgeries. Although removal of the uterus can provide relief, it is not a guarantee as the problem is not the uterus itself. Endometriosis pain can return following a hysterectomy.
Pregnancy can lessen the symptoms of endometriosis for a temporary time, but it is not guaranteed for the whole pregnancy and is temporary. You may get symptomatic relief for 9 months, but the pain does come back. In fact, in some cases, the symptoms of endometriosis have increased postpartum.
The issue is what may work for one person might not work for another. Birth control can help manage pain for women with endometriosis, but not everyone has the same results and relief. Excision surgery is a procedure where an endometriosis specialist removes lesions from the abdomen, and it can temporarily solve the symptoms; however, there is no guarantee the endometriosis will not return, and another surgery may be required.
Endometriosis Prevents Pregnancies
Though it is possible to be infertile or difficult to conceive while dealing with endometriosis, fertility treatments are available to assist a natural conception. Between 30 and 50 percent of women with endometriosis may experience infertility leaving another 70 to 50 percent of women fertile. Many women with chronic illness are able to conceive with little to no issues.
In vitro fertilization, commonly known as IVF, is an option for want-to-be parents. IVF is a process where an egg is combined with sperm outside of the body, in vitro. The fertilized eggs are placed back into the body and pregnancy can occur. Adoption is another alternative.
Learning about endometriosis can help avoid confusion and enable an understanding for those who have and have not received a diagnosis. It is important to realize pain is real and felt differently by every individual. Endometriosis is an invisible illness, and, because it can not be seen, it does not mean it is not validated. Finding a treatment for endometriosis is going to take dedication and the spread of awareness to make a common illness well-known. Talk to doctors and seek answers to questions.
Ways to Support
- Do not give advice unless you are an endometriosis specialist.
- Sometimes when sharing encouraging anecdotes to those who are in pain, unintentionally more damage can be caused. Not every person with endometriosis has the same story, so stating someone you know has endometriosis tried this treatment and is now better can be discouraging when it does not work for the other person. Making suggestions as if treatments were as easy as taking ibuprofen can be upsetting. If treatments were that easy, a doctor would not be needed.
- Endometriosis patients are often in need of critical care, with disease implicating organs. Oftentimes, the advice given out is based on myth. Advice tends to be to either get pregnant or have a hysterectomy because someone they know had positive results. However, pregnancy and hysterectomies are not cures for endometriosis and do not work for everyone. Endometriosis can make conceiving hard for couples as well. Claiming pregnancy as a valid treatment can open silent wounds inside the endometriosis patient. While essential oils, acupuncture, and diet can help with endometriosis-related inflammation, they are not cured nor helpful.
- Education is key
- Another way to show support is by researching endometriosis. Knowing how to manage pain for the ally and educating other mutual friends and family can ease the pressure off of the individual.
- Maximize support and minimize the experience
- Supporting means being flexible and understanding. With endometriosis, an individual can be fine one day and bedridden the next as it is unpredictable. It is hard to understand what they are going through, but, if you find the unreliability frustrating, imagine how it feels for them to wake up every day and not be able to rely on their own body to do what it is meant to do. Never make a loved one feel bad for putting their health first. Instead, be flexible and assure your love is unconditional.
- How an endometriosis patient looks is not always how they feel
- Endometriosis is an invisible disease. Those who are suffering can appear healthy on the outside. The body of a person with endometriosis is often in a state of crisis. Mental health is affected by endometriosis by increasing depression and anxiety and experiencing infertility plays a mental struggle as well.
Be mindful of the struggles being pushed through on a daily basis and try and be gentle. Endometriosis can be isolating for those struggling, but showing love and care can have an impact for the pain. Having someone care enough to learn the basics and understand there will be good days and bad days can make the difference for the person. Endometriosis isolates an individual from everyone including other endometriosis patients because each case is different. No one truly understands the pain and frustration you feel when dealing with losing control over your body to an invisible illness. Being kind, loving, understanding and flexible are the best ways to show support to an endometriosis warrior.