It's important when talking about endometriosis, we talk about fatigue. Unfortunately, fatigue is something that quickly accompanies endometriosis and can be life altering. Being in a constant state of pain takes a lot of energy out of a person. Having to plan your day/life around a chronic illness is exhausting.
Fatigue is different from just being tired. With fatigue, it doesn't matter how much sleep or rest you get, you're still tired. Fatigue leaves you with little to no energy or motivation. Some people who suffer with endometriosis also have chronic fatigue syndrome, which is oftentimes diagnosed when there are not any other explanations for symptoms the patient is experiencing. It can be difficult to get a proper diagnosis because there isn't one single test that leads a doctor to diagnose a patient with it.
Fatigue can also occur because of a vitamin deficiency. There have been studies conducted to determine the link between people who have endometriosis and vitamin D deficiency as well as a link between low vitamin B levels and chronic fatigue syndrome. The levels of vitamins can be checked by your doctor by ordering blood tests.
Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women (1,2) is a study that was conducted from 2004 to 2009 to determine if there is a link between women who have endometriosis, an early hysterectomy, menstrual abnormalities, and/or early menopause and chronic fatigue syndrome. The study found that 71 percent of the women who had a complete hysterectomy at a significantly younger age developed chronic fatigue syndrome. At the time of this study, more research needed to be conducted to determine if these body changes cause or lead to chronic fatigue syndrome.
I haven't been diagnosed with chronic fatigue syndrome, but fatigue is something I have struggled with for more than ten years. While I was attending college, I would study in my bed, and more times than not, I fell asleep. I wasn't like most college students. I couldn't pull all nighters studying or going out because I was always tired no matter how much sleep I received each night. Energy is something I didn't have then and still don't. I do have a vitamin D deficiency, which I was diagnosed by a doctor and take a vitamin D supplement. I have talked with many women who have endometriosis and suffer with some degree of fatigue and/or vitamin deficiency.
Rest is necessary to heal. It's okay to rest however long you need to. Fatigue that leaves you with no energy, no motivation, and canceling plans regularly is not normal. If you feel like you could have chronic fatigue syndrome and/or a vitamin deficiency, talk to your doctor about possible testing and treatment options.
I hope you find this information helpful.
Prescription medications are manufactured by drug companies that are purchased by pharmacies for patients to receive to help treat a wide range of illnesses. If you have endometriosis, kidney stones, alpha-1 antitrypsin deficiency, neuropathy, high blood pressure, or any other chronic/long term illness, you’ve had some type of prescription medication.
I want to provide you with some advice I wish I would have had before I was diagnosed with endometriosis. Don’t always trust what medications your doctors are prescribing. Ask questions. No question is a dumb question. If your doctor won’t answer your questions, my recommendation is find another doctor. Do your own research no matter how much you trust your doctor or how long you’ve been seeing them. Unfortunately, some doctors can and do receive kickbacks (money) for prescribing certain medications. Drug companies can and have been sued for how they advertise their medications, but that doesn't stop them. How many times have you been watching TV and seen a commercial for the "newest" or "best" medications on the market?
One medication that I know this to be true for is Lupron, which is often prescribed for endometriosis treatment even though it’s a chemotherapy drug for prostate cancer. In my experience and others that I’ve talked to, our doctors failed to mention the awful side effects that can accompany Lupron use. Orilissa is a new medication that is similar to Lupron and has received a lot of advertisement. Even though it’s not guaranteed that we would experience these side effects, we should have been told just in case we didn’t want to take that risk. We trusted our doctors to be upfront with us. I was young and didn’t know any better. I trusted my doctor to give me all of the information, not just the information they chose to share. How can patients make informed decisions about their bodies without all of the information? To these drug companies and the doctors that prescribe their medications and receive kickbacks, it's always about the money. Money outweighs the patient's health, which is disgusting, and in my opinion, should be against the law.
It is important that we do our own research to make sure we are making the right decision for our bodies and what medications we decide to put in our bodies as they can have lasting effects down the road. I hope you find this information helpful.
I decided to take it to the streets (the social media streets that is) and ask people what they would like to know about alpha-1 antitrypsin deficiency as it’s not a well-known illness. Here’s what people wanted to know:
• At what age does it start?
Alpha-1 antitrypsin deficiency is a genetic condition, but isn’t usually checked in infants. The onset of symptoms can start at any age and smoking increases the onset of symptoms. Someone who doesn’t smoke is less likely to show symptoms than someone who smokes.
• What is it?
Alpha-1 antitrypsin deficiency occurs when the liver doesn’t produce enough alpha-1 antitrypsin protein that is made by the liver and helps the lungs function properly. It can cause decrease in lung function, shortness of breath, need of supplemental oxygen and inhalers, as well as other symptoms.
• Can someone have it and the symptoms never manifest? Also, if the symptoms don’t manifest, how does it affect overall health?
Yes, someone can have alpha-1 antitrypsin deficiency, but never show symptoms. As far as showing symptoms, smoking is a major contributing factor to showing symptoms and further progression of the illness. If symptoms (like shortness of breath) don’t manifest but someone knows they have it, they can go to a pulmonologist to have routine lung function tests to see if they are losing lung function and need to start treatment for alpha-1. It is possible to live a long life with alpha-1 with lifestyle changes and early augmentation therapy for treatment. It’s also possible to have it and not ever experience symptoms depending on lifestyle.
Thank you so much for participating with your questions! I hope you all find this information helpful in learning more about alpha-1 antitrypsin deficiency.
I decided to take it to the streets (the social media streets that is) and ask people what they would like others to know about endometriosis. Who better to talk about endometriosis than those who suffer with it every day? Here’s the much needed information we want people to know about the disease:
• “We are almost always in pain. There is no cure.”
• “Endometriosis is more common than asthma and diabetes. Yet the medical community more specifically the ACOG is so out dated, people are still taking 9-10 years to get a diagnosis. It only takes 3.5 years to sail around the world, but 176 million people are suffering worldwide with endo and most OBGYNs do not know how to properly treat endo.”
• “Endometriosis is not just ‘killer cramps.’”
-Heather Guidone, Center for Endometriosis Care
• “Endometriosis can lead to other health issues as well as mask itself as other health problems without properly being diagnosed.”
-Rebecca Gardner, Worldwide EndoMarch South Carolina
• “It’s more than just a period issue. It impacts your WHOLE life. Not just your period.”
• “We want to be there, more than you know, but some days we just can’t. Physically, mentally, emotionally endometriosis steals so much away from you.”
• “There is NO cure, despite the myths you may hear, as of right now it’s a life-long invisible illness.”
-Courtney Raye-ann Vallier
• “No person should miss out on school, career, social participation, or motherhood because of pain and painful periods.”
-Dr. Sallie Sarrel, PT, ATC, DPT
• “Extra pelvic disease is not rare. Endometriosis is a whole body disease that can affect every system of the body.”
• “It spreads like wildfire, is hard to get rid of and causes constant pain. We aren’t faking pain. . . we’re faking wellness.”
• “I recently had a flare so bad that I felt like I was in active labor. I was vomiting and going in and out of consciousness because of the pain. I read somewhere that the pain we go through can actually feel like a woman who is 7-8 cm dilated, in active labor, having a contraction. I definitely felt that.”
• “Even excision surgery is no cure! I’ve had countless ill-informed doctors dismiss my endo because I had that surgery.”
• “It doesn’t just destroy our bodies. It destroys our minds and hearts because of the depression and anxiety we get from being in pain 24/7 and everyone treating us like it’s all in our heads. It also destroys relationships with our family and friends. It’s not just us that suffer. It’s everyone close to us who suffers too.”
-Alexandra Ali Morgan
• “It takes a toll on your relationships. People that love you try to understand, but have no idea what to do to help so it is also frustrating for them not just us. My hubby and I got in to that talk the other day. I have always said this is an US thing even though I feel like I’m fighting by myself he has never left my side! We also have to try so many medications for our symptoms.”
• “We want to get better to feel better and do what we want to do. Don’t just see us as baby making machines, trying to help us get pregnant. Especially when you haven’t even asked if that is our goal. Ask the patient what their goal is!”
• “We experience painful sex and some of us will never be able to be a mother.”
• “Endometriosis caused my bowel and bladder pain. I haven’t had those pains in five years since having excision surgery.”
• “There is no cure despite excision by a top doctor, despite those commercials, despite anti-inflammatory diets. It’s managed if you have lots of money. Most of us have much more than endo.”
• “Stop. Comparing. Normal. Periods. To. Life. With. Endo.”
• “It’s not just a ‘woman’s disease’. It can affect the entire family when an individual suffers from endo.”
-Melissa Tison, Endo InVisible
• “It is a horrible, silent disease.”
• “Suppressives in the GnRH category, hysterectomy with ovarian removal, and high doses of progesterone are putting people into severe estrogen deprivation far too young. It’s leading to severe osteo issues, which are not always reversible.”
• “Researching and finding a competent doctor made me not commit suicide. I had a plan for it if he wasn’t as good as he sounded. He was even better. Finding him saved my life.”
• “There is not cure even after a hysterectomy, which I had in 2017.”
• “Endo almost killed me; it’s not the end. I’m living hope.”
• “It will completely redefine what your ‘normal’ looks, feels, and acts like.”
-Michelle N. Johnson, Fighting Fiercely
• “More of us are told the pain is in our heads than actually being believed and helped. It’s not just a bad period!! It’s so so so much more.”
• “Endometriosis is tissue similar to the uterine line. It is not identical to uterine tissue.”
As you can see, endometriosis is a complex disease that has a wide range of physical, mental, and emotional aspects that impact every facet of our lives as well as our loved ones. It’s important that we continue speaking up as much as we feel comfortable to help spread awareness, provide education, and hopefully get closer to finding a cure.
Thank you so much to everyone who participated in this blog. I’m so grateful you all wanted to share. We are all strong Endo warriors! Keep fighting!
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.