The month of March has been declared National Endometriosis Awareness Month in order to raise awareness. 176 million reproductive-age women have endometriosis worldwide. Symptoms start when the female reaches the age of menstruation and continues until the age of menopause. It is important to bring additional awareness to this misunderstood disease because the lack of knowledge causes diagnosis of endometriosis to be delayed by seven to nine years. Awareness and advocacy allow those who have it not to feel so alone, and it also helps those who do not have the illness to better understand their friends, colleges, and family members. There are numerous misconceptions, misunderstandings, and even gaslighting by community members who do not understand the disease.
Everything we who have endometriosis go through is a conduit to empower someone else. Advocacy can take various forms, but it begins with you. Our voices have the power to make a difference. There are no known causes of endometriosis and it is not contagious, but it is important to find our voices in a world where menstruation is taboo to talk about. Endometriosis has more victims worldwide than cancer, yet it is not talked about, there is no funding, there is no research being conductedThere are only 100 Endometriosis specialists skilled in advanced laparoscopic surgery worldwide – the only method available to diagnose endometriosis.
- Pain before and during menstruation
- Pain during ovulation
- Painful defecation
- Chronic pelvic pain
- Pain during intercourse
- Chronic fatigue
- Heavy bleeding
- Digestive problems
- Ovarian cysts
- Hormonal disruptions
- Lower back pain
- Nausea and bloating
- Trouble with constipation or diarrhea
This chronic illness is ranked in the Top 20 Most Painful Conditions. Tissue similar to the endometrium inside the uterus actually grows outside instead. It can grow in the fallopian tubes, ovaries, the tissue lining in the pelvis, and can move throughout the body. It is a full body disease. The pain occurs before, during, or after menstruation and can be random. Some women feel disabling severe pain and cannot move. The pain levels of someone with endometriosis can reach so high that they cause people to fall unconscious.
Endometriosis is more than just a “bad period”. It affects one’s everyday life making even the simplest tasks hard or sometimes impossible to manage. It is both a mental and physical disease. It not only causes an increased amount of pain, but it can cause severe depression, anxiety, and brain fog as well. It is easy for false information about endometriosis to spread, thus making advocacy and awareness all the more important to keep facts straight and help find a cure. To this day, there is no cure for endometriosis despite one in ten women having the condition. Pregnancy, birth control, and hysterectomies are not cures, and a doctor stating it is, is wrong. Pregnancy, birth control, and hysterectomies may provide temporary pain management, but they are not cures. However, it is important to understand everyone experiences the disease differently and one type of management may work for one person but not another.
March is National Endometriosis Awareness Month, and in order to highlight the subject here are four ways to raise awareness on a rarely talked about highly experienced disease.
Talk About It
Endometriosis is one of the most common gynecologic disorders, yet it is also the most misunderstood. Most of the women diagnosed have no or limited information about what the illness is. There are sources like HealthyWomen and MEinEndo.com providing women with reliable information to help them learn and better understand the disease, but most people are unaware of its existence to begin with. It is important to create an open environment for dialogue and ask specific questions related to endometriosis. Both patients and doctors can work together to raise awareness of this disease in order to educate others and help change the way endometriosis is understood.
Women’s health in general is talked about in a limited sense by school and doctors. It can be difficult for women struggling with painful periods along with other symptoms to open up and talk about it because menstruation is considered a taboo topic in most places. Periods should not be more than a mild discomfort. A lack of awareness of regular menstruation and the difference between that and other menstrual diseases is too common and contributes heavily to the long 7-to-12-year wait for diagnosis. The journey is made more excruciating by the ignorance and scepticism of endometriosis one encounters, but the truth is, you know your body and should never settle for less than the best help for yourself. We need to start talking about it and set the story straight on what endometriosis is and how it affects everyone dealing with it.
There is a lot of misinformation and advocates are not being heard. Doctors who are misinformed about the illness and dismiss women’s symptoms are all too common. Doctors who are not qualified to deal with endometriosis often gaslight patients saying “it is all in your head”, “you just have a weak pain tolerance”, “you just want attention and are faking it”, and “it is just an attitude problem”. The issue is when you have everyone around you telling you it is in your head or you are making it up, and then you go to a doctor and they say the same thing: it can be hard to speak up about the struggles you are facing. When your doctor finally decides to perform the surgery to see if you have endometriosis and it comes back positive, it is almost a relief because there is in fact something wrong. In reality, a diagnosis about an incurable, chronic disease should not be relieving.
The lack of education and awareness allows doctors and peers to judge you and make false claims about your intentions for your own health. Being called a hypochondriac or a liar when you say you are ill is not good for your mental health. Anytime someone claims I am faking being ill, it is very frustrating because I fake being well almost everyday. My favorite comment I have ever received was from a coworker who was not aware of my diagnosis. They got upset because I had to take a moment to compose myself because I was in so much pain, my body on the verge of passing out. The comment I received was “well you don’t look sick”. The fun thing is, most people with endometriosis suppress the pain and sickness everyday in order to push through and survive otherwise we would never get anything done. Endometriosis is a silent illness and it can be hard to detect at times. Just because you cannot see the effects does not mean they are not there.
It is important to remember:
- Inflammation is not a mindset issue.
- Blistering lesions are not a mindset issue.
- Adenomyosis destroying the uterus is not a mindset issue.
- Searing pain every time we use the bathroom is not a mindset issue.
- Debilitating pain and fatigue is not a mindset issue.
A CHRONIC ILLNESS IS NOT A MINDSET ISSUE!
Just because you or someone else cannot see all the symptoms and signs of illness does not mean the symptoms and feelings are invalid. If a healthcare provider dismisses your illness or symptoms, fire them, and find a new primary care provider. If you are able to get access to better care, seek it out. Educating yourself is step one, but having a team of properly educated and skilled healthcare providers is step two. Endometriosis is a psychologically damaging illness, so it is important to not think negatively of yourself and the struggles your body goes through, it is important to not take what others say or think personally because they do not understand, and it is important to surround yourself with a positive support system with your peers and doctors.
It is equally important for those with the illness and those without it to educate themselves in every way possible. Misdiagnosis or extended diagnosis times are due to the lack of education and research done on endometriosis. For those going to the doctor for a cure, educating yourself will help you better understand your body and help you stand your ground when the doctor is trying to dismiss the disease as something else. By doing research and educating yourself, it can be helpful to understand medications and their intended uses, how they affect the body, and how they will help with endometriosis.
Doctors tend to prescribet birth control as a way to treat endometriosis, but the disease does not rely on the uterus because it is an outer uterus disease. A common misconception of endometriosis is when the endometrium typically found in the uterus grows outside of the organ, however, it is not in fact the endometrium but a tissue like it, so they are not related or affected by the same medications. However, hormonal birth controls have been found to temporarily relieve the pain for endometriosis patients. It is important for you to talk to your doctor about your treatment plans and for you to do research on the intended purposes and effects they have in order to pick the best option for you.
Greater knowledge brings forth a greater chance of improving the life of someone with endometriosis. Helping to educate as many women as you can about this disease will enable them to speak up and seek out medical advice in the future. One in ten is a lot of women, and future women are not in the clear for this disease. Education all across the board is needed in order to help people better understand their bodies. However, not every educational tool has to be boring. Joining an event is a fun way to educate yourself and others.
Share Your Story
Juggling life and a chronic illness is no easy feat especially since no one understands you. It is easy for people to understand pain because everyone has experienced it in one form or another, but it is a lot harder for people to understand fatigue because most people can go to bed when they are tired and wake up refreshed or good enough to go about their business. Chronic fatigue makes it difficult to go about your day no matter how much you sleep. Fatigue is one of the most underrated yet debilitating side effects of chronic illness, and it is often overlooked by health care professionals, friends, peers, and loved ones. Not to mention, endometriosis also provides the individual with heavy hitting insomnia making sleep nearly impossible at night.
In order for people to better understand what someone with endometriosis – or an“EndoWarrior” as we like to call ourselves – is going through, it is crucial for us to tell our stories. Not only to help educate others but to raise awareness for treatment. Never underestimate the power of your story. Your experiences can make someone feel validated and supported, help them feel less alone, and provide new information for someone who did not know much about endometriosis. It helps to educate the world about what women with this disease go through in their daily lives. It is not easy to come forward to tell your story, especially when you feel no one understands you, but through advocacy and awareness, voices can be heard.
My Endometriosis Story
I usually put myself into my writing in a roundabout way and tend to allow readers to know how I feel without being direct about itt. However, this article is a little different because not only am I passionate about endometriosis and its awareness, but I myself am an EndoWarrior. It is hard to talk about the importance of sharing endometriosis if I am not willing to open up and share a little bit about my journey to diagnosis and what it is like to live in my shoes.
For about 11 years, I have been living with endometriosis. I had experienced copious amounts of pain for so long I thought it was normal. However, as I got older the pain became more severe, and I knew it was time to see a doctor when I found myself on the floor of the plant I was working at due to the excruciating amount of pain my body was in. I figured I would keep working and deal with it as period pain, “normal” or so I thought. Passing out that day at work was the final straw and my parents took me to the doctor because this was not the first time something like this had happened. Two years prior, I had a mini seizure on the bathroom floor of my grandparents house because my body could not handle the level of pain it was in.
When I talked to the gynecologist, he prescribed me birth control pills in order to try and regulate the pain. I felt mortified. I was 15-years-old at the time, and my mind went straight to “doing the nasty”, and since I had no intentions there, I felt dirty, ashamed, and embarrassed to be on the pill. I was on the pill for a couple of months with the worst side effects. I was extremely nauseous, I gained a ton of weight despite a strict diet and exerce regime, and I had some killer mood swings I could not control. I did not feel happy or healthy, so I decided to stop. The pain had gone down to a manageable level by this point, so I decided to see how things went.
It was not until my sophomore year of college when the process to find a diagnosis was reopened after I passed out without warning on a study abroad trip to Spain. Previously, most of the time there were warning signs before an incident that I could listen to in order to control it, but the signs had disappeared, and I would find myself waking up on the floor of my room.
The process for the diagnosis was mentally painful. My gynecologist continuously told me that periods are meant to be painful and that I was making things up. He sent me to get an MRI, he sent me to a blood specialist, and a cardiologist in order to see why I was passing out – he claimed this had nothing to do with my menstruation and was a coincidence. He had talked about the possibility of endometriosis before, but he said it was not likely due to the way I described my pain.
The turning point was when the cardiologist asked me for my symptoms as all her tests came back negative, and when I told her she said “I am not a gambling man, but if I were, I 100% believe you have endometriosis”. I remember the day like it was yesterday because when I went to report the results to my gynecologist he looked me in the eyes and said “she does not know what she is talking about. You do not have any of the symptoms”. I was baffled. This moment right here is when I realized how important it is to educate yourself and how important it is to stand by the idea you know your body.
Growing up, I had experienced pelvic pain so severe I could not walk some days. It still affects me, and can hit randomly whether you are walking or standing. It will decide to lock up and not support you anymore. It is very uncomfortable and painful while it happens. I also experienced insomnia; extreme pain before, during, and after menstruation; pain during ovulation; extremely heavy bleeding; lower back pain; nausea; and trouble going to the bathroom. All the signs were there.
Reluctantly the doctor said “fine, schedule the surgery, but you do not have it”. Long story short, he performed the laparoscopy surgery and I was diagnosed. From start to finish, it took me roughly seven years of standing my ground, dealing with gaslighting, and being told I was crazy in order to be diagnosed with endometriosis. I remember the relief I felt when I was told that I did in fact have endometriosis and that I was not a hypochondriac.
Moving forward with treatments, my biggest concern was that endometriosis can cause infertility. For me, I can deal with the pain. As long as I can have a child in the future, it will all be worth it. I am only in my early twenties, so I have a while to go, but planning for the future is not easy when you have endometriosis because the disease ages the uterus. After trying all the forms of birth control and seeing how my body reacted, I decided to stop the treatments. Because there is still no cure for endometriosis, having a laparoscopy and using birth control are the only two things doctors typically recommend for women who are still in their childbearing years.
Bringing more awareness to this disease, I am hopeful there will be more research and someday a cure. I hope to bring awareness and allow for more education in order to prevent young women like me from experiencing the negativity and gaslighting I did about such a serious health matter. Endometriosis has created many obstacles and disruptions in my life, but it has never stopped me from doing what I want to do, even if I have to work harder than the average person.
How Can You Support
- Do not give advice unless you are an endometriosis specialist.
- Sometimes when sharing encouraging anecdotes with 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 such and such a 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 don’t cure it.
- 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 on an 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 them that 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, which increases depression and anxiety; and the possibility of infertility adds to the psychological struggle.
- Understand We Have Bad Days
- EndoWarriors can be fine one day and bedridden the next. If we have to cancel plans at the last minute, know we are really sorry, and do not want to miss out, but our bodies are not our friends sometimes. It can be hard for us to have the confidence to go out when our bodies have flare ups.
- An endometriosis flare up is when the symptoms and pains of a chronic illness intensify and become debilitating. Flare ups can appear at any time and last days, weeks, months, or sometimes even years. At times, there are no reasons for a flare up to come on, but it can come on due to stress, weather, hormones, and certain foods.
- Our stomachs can also bloat during this time. In my experience, my stomach swells to look six months pregnant, is tight, and increases the intensity of pain. Anyone experiencing a flare up can get headaches, nausea, back pain, fatigue, abdominal pain, swelling, irritable bowels, and leg pain.
Be mindful of the struggles people go through on a daily basis and try and be gentle. Endometriosis can be isolating for those struggling with it, but showing love and care can ease 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.
Awareness should not only be pursued during National Endometriosis Awareness Month. Continued advocacy, education, and awareness are the only ways to bring light to the subject and hopefully find a cure one day. Fight back against the taboo about “feminine talk” and raise awareness about an illness affecting almost 200 million women worldwide. Do not allow doctors to silence your voice and gaslight you into suppressing your condition. Educate yourself and others in order to help future generations of women understand their bodies and situations in order to combat this chronic illness. Happy National Endometriosis Awareness Month!