Having any type of chronic illness (endometriosis, alpha-1 antitrypsin deficiency, PCOS, etc.) doesn't only take a toll on the organs that are directly affected by disease. Chronic illness takes a toll on the entire body including mental health. Chronic illness can limit what you're able to do. It can make you feel isolated and alone. It can make you feel unworthy. All of these are valid feelings, but it's important that we talk to someone who specializes in counseling, therapy, and/or psychiatry to get the help we need so that we don't get stuck in these feelings 24/7 and are able to live.
Counselors listen to what their clients are going through. Sometimes it's helpful just having someone to talk to and listen who is not directly part of your life and decisions you make. Counselors are not doctors, therefore they can't prescribe medications.
Psychiatrists are doctors and don't listen as long as counselors do. They ask questions to make sure you aren't a danger to yourself or others and can prescribe medications for depression, anxiety, or other mental health illnesses. Needing medications for mental health illnesses is not a bad thing and shouldn't be stigmatized. If you injured your knee and needed medication, would you take it? Yes, especially if you were experiencing a lot of pain. Mental health should be viewed the same way.
I think everyone, especially those who suffer with some type of chronic illness should have a counselor and/or psychiatrist. It can be extremely difficult to talk to our family, friends, or those closest to us about what exactly we are going through for fear of being judged or misunderstood.
I hope you find this information helpful.
I have talked with many people who have changed doctors or are looking to change doctors for varying reasons, but the commonality is that they don't feel like they were receiving standard of care from the doctor they changed from or their current doctor. YOU know your body better than anyone. If a doctor is trying to push a treatment on you that you don't agree with or don't want to put in your body, you have the RIGHT to say NO and get a new doctor. If you feel like the doctor doesn't know what they are talking about, you have the RIGHT to get a multiple opinions from different doctors.
Changing doctors can be a daunting task and elicit anxiety, but it can be necessary for you to receive proper health care. I know this first hand as I have been to over 20 doctors in the last ten years trying to find answers for the chronic illnesses I've been suffering with. Unfortunately, the first doctor we go to isn't always the best or most knowledgeable. Hopefully I can provide you with some tips that help minimize these feelings as much as possible. These are some things I did right before I had my hysterectomy in 2014 and continue to do so. I wish I would have done these much sooner.
I think being as detailed as possible will only help you with your new doctor and make them realize you are only trying to find answers to help you feel better. Unfortunately, some doctors will still think we're being dramatic or a tough patient to please. If you experience this, please find a new doctor. It IS NOT all in your head. You DID NOT do this to yourself. You ARE NOT a tough patient. You ARE NOT being dramatic. You ARE important. You deserve the BEST care possible.
If all of the above information doesn't allow your new doctor to see all of this, they aren't worth your time, money, aggravation, or tears. It may take you seeing several doctors and essentially starting over to find the right doctor for you and that's okay. There isn't anything you did wrong if this is the case for you. I've been there. It may seem like a full time job doing all of this for your health, but if you don't do it, who will? You only get ONE life and you ARE worth it.
Back when I was a teenager just diagnosed with endometriosis, I thought it was wrong to change doctors or contradict what your doctor is telling you. I thought I could trust them. However, I have come a long way since then. I now know changing doctors has been necessary for my health and advocate for people changing doctors if they don't trust what their doctor is telling them, like how they are being treated, etc.
Here are two examples of recent doctor changes; one that I felt I needed to make and one that was out of my hands:
In January, I had surgery for a kidney stone by a urologist I had just started seeing. After this procedure, I was still having pain and infections a month later. This urologist told me it was because my body was still recovering from having a stent and then it being removed two weeks later. I decided I wanted a second opinion and made an appointment with a urologist I trusted who was two hours away. The appointment would be the following month, two months after having surgery.
During my appointment, I told the new urologist about the surgery I had two months prior and that I was still having pain and infection. He agreed that having lithotripsy and a stent in two months ago wouldn't still be causing my issues. He tested my urine and said it showed infection; he prescribed me an antibiotic that I hadn't been on. I felt better within a week and haven't felt like I had a urinary tract infection since.
Most recently, the gastroenterologist I saw for the first time left the office. I only saw this doctor one time and had no control over being referred to a different doctor in the same office. Before the appointment with the new doctor, I had been to the emergency room six times since January. I printed all of my records from my patient portal from the hospital and went to medical records to get a copy of my most recent CT scan. Even though I had been to that office before, I felt like I was essentially starting over and would rather be over prepared than under prepared. I didn't want to continue repeating liver enzyme tests as that would be putting off surgery even longer and I had proof that they were higher than normal multiple times. I'm very thankful that they looked over all of my records that I brought and agreed with me. Had I not brought them, I may be in a different situation.
Moral of these stories: Trust your gut. Trust your instincts. Trust your body. Keep fighting for your health. If something your doctor is telling you doesn't jive with what you know, it's okay and may be crucial for you to get another opinion no matter the illness. If your doctor isn't hearing what you're saying or treating you properly, it is okay and may be necessary to change doctors. You have to take care of yourself and do what's best for you.
I hope you find this information helpful.
Planning while living with a chronic illness can be extremely exhausting. I think it's crucial to have a system in place that makes planning your day out as easy as possible. This is something I've had to do my entire adult life. Having a chronic illness makes it more difficult to travel, find places to eat if you have diet restrictions, as well as do day to day tasks like take a shower, cook, and clean. I'm going to go through some things that I have found helpful while balancing life with a chronic illness.
I use a weekly planner to write down everything I need to do for the next week. This includes things like doctor appointments, grocery shopping, vacuuming/cleaning, laundry, class schedule while I was attending college, etc. I try to limit activities that are more exhausting in a given day to two. If I have a doctor appointment, I'm not going to plan to do much that day because I need to mentally prepare for my appointment and don't know how long my appointment is going to last.
Lately when I've been traveling, it's been for day trips to visit family, friends, and attend doctor appointments. I try not to do more than two day trips in a given week because of how I may feel after. I plan out as much as I can, like what I will be eating while I'm traveling. I take some type of granola bar with me to snack on just in case I need it. Depending on how far I'm driving, I try to have at least one rest stop that allows me to get out of my car, stretch, use the restroom, get gas, etc. It's also important that I have nausea and pain medication on hand (if I have any) just in case these symptoms arise while I'm gone. I use my GPS to know how long my trip will be and where the halfway point will be so I can plan when I'm going to stop at a rest area.
I also schedule rest days during the week. I try to give myself at least one rest day (lately more with the pain I've been experiencing) where I don't have anything planned and can relax as much as possible. This may consist of working on my phone or computer, but I'll be laying in my bed or sitting on the couch while doing so.
I use the Calendar and Notes apps on my phone, too, to help me keep track of what I need to do each week. It can be helpful to have the same information in multiple places, especially if you are experiencing symptoms that can be distracting like pain and fatigue.
What do you find is helpful for you in planning out your day while functioning with a chronic illness? Do you have questions about this blog? Leave a comment below!
I hope you find this information helpful.
Some medications are necessary to keep people alive (such as radiation and other treatments for cancer and augmentation therapy for alpha-1 antitrypsin deficiency), which outweighs the side effects if that's what patients are looking for. However, with other illnesses (for example endometriosis), those suffering are trying to decrease their pain and other symptoms as well as be able to bear children.
I talk about Lupron frequently because of what I and so many others who are suffering with endometriosis have been through when we tried this as a treatment. Lupron is an injection that is used to treat prostate cancer, but many doctors/gynecologists use it to treat endometriosis. Because it is used for cancer treatment, this makes it a chemotherapy drug. Endometriosis is not cancer even though it can spread throughout any part of the body. So why are doctors trying to treat an illness that isn't cancer with a chemotherapy drug? This is one question that has yet to be answered other than with the response money.
Side effects that people who use Lupron can experience and doctors may not tell patients include osteoporosis (thinning of the bones, brittle bones no matter the age), suicidal ideations, brittle or breaking teeth, hot flashes/menopause/night sweats, headaches, among others. Oftentimes, these side effects are irreversible meaning once you have them, you can't improve them. For example, once you break a tooth or have osteoporosis, you can try to prevent breaking other teeth by taking more vitamin d, calcium, etc., but you can't grow a tooth to replace it. Once you injure a bone, you can't go back in time to not injure the bone. You can use crutches or a splint to try to heal the bone as much as possible, but it will never be the same. This is how side effects can be life altering.
Lupron isn't the only medication that causes harmful side effects that may be worse than what the medication is trying to treat.
Should money outweigh the side effects that patients may experience from a medication? NO.
Is it true that doctors can't predict which side effects each patient will have from the medication? YES, but patients still have the right to know all of the information about the drug from their doctor upfront.
Should doctors give patients ALL of the information about a medication before asking the patient if they want to use it as a form of treatment? YES.
Unfortunately, this isn't how the health care system or the world works. We are responsible for looking up information about our illness, treatment options, and any other important information that could affect our health care. We have to be our own advocate.
Please research the treatment options you are being offered for your chronic illness as well as other options you may have before making a decision because side effects may not go away and can be life altering. It's important to know the side effects that are possible and weigh your options with the illness you are trying to treat.
I hope you find this information helpful.
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, women 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.”
• “Women 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 women 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!
Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like colon, ovaries, Fallopian tubes, as well as others.
Because endometriosis can be found anywhere in the body causing a wide range of symptoms, it also comes with other chronic illnesses or comorbidities.
Comorbidities associated with endometriosis include, but are not limited to:
As you can see, many of these illnesses have symptoms that overlap, which can make it difficult to receive the proper diagnosis. I have talked to many people who suffer with endometriosis and have also been diagnosed with other illnesses. It's important that we listen to our bodies and advocate for ourselves as much as we can to receive diagnosis and treatment for our illnesses. Unfortunately, we can't only rely on our doctors.
Personally, I was diagnosed with endometriosis in 2010. I have also been diagnosed with vitamin D deficiency, IBS, PCOS, IC, and osteoporosis.
I hope you find this information helpful in your health journey.
Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like colon, ovaries, Fallopian tubes, as well as others. The only true way to diagnose endometriosis is through laparoscopic surgery.
Two techniques that doctors use to remove endometriosis are ablation and excision. Ablation is burning the diseased tissue and doesn't remove all of the disease, only the surface. Excision, on the other hand, is cutting the disease and allows the surgeon to remove most, if not all, of the disease. Excision has a much higher success rate than ablation, but all doctors are not trained in excision laparoscopic surgery or frankly, what endometriosis is.
Because of this, patients with endometriosis have multiple surgeries trying to treat their pain and other symptoms. Each surgery requires at least one incision, most likely two to four incisions depending on the instruments the surgeon needs and where the disease is located. Along with incisions, the patient is put under general anesthesia, which can have its own risks. Being put to sleep multiple times can be dangerous. Having multiple surgeries can increase the amount of scar tissue patients have and can cause adhesions or organs sticking together. People can also get hernias from surgeries. Something as simple as sneezing can send someone who has just had abdominal surgery into increased pain and feel like a pulled muscle. As you can imagine, this is all extremely painful.
The recovery time for laparoscopic surgery can range from two to six weeks depending on what your doctor recommends and how extensive the surgery is. This means patients have to take time off work, which can cause financial strain.
Imagine you're living with pain that feels like barbed wire is around your abdomen and your insides are going to fall out. This is how at least 176 million people worldwide live every day. Now imagine that there is no blood test to properly diagnose your illness, but instead, only surgery. This is the reality of those who suffer with endometriosis.
Endometriosis has been found on the bladder, gallbladder, stomach, even the brain, lungs, and eyes. This is tissue that bleeds, causes inflammation, and doesn't belong on any of these organs. This is why other illnesses often accompany endometriosis.
In essence, a surgery is trauma to the body. When a doctor burns or cuts tissue, that causes trauma to the body so the body needs proper time to heal. I use the word trauma because trauma is physical injury and is synonymous with injury, damage, hurt, wound, sore, and lesion.
Doctors who are operating on patients with suspected endometriosis should understand the anatomy of each organ to properly diagnose and remove disease. Otherwise, there could be complications immediately or later down the road for the patient. It seems that doctors would rather operate on patients instead of referring them to an endometriosis specialist for proper care.
Personally, I have had six abdominal laparoscopic surgeries by six different doctors for endometriosis. I have had endometriosis on my bowels, ovaries, and pelvic wall. Five years ago I made the decision to have a complete hysterectomy (removal of both ovaries, uterus, and cervix) in hopes to find some relief even though I know it's not a cure and wouldn't be able to have biological children. I still experienced pain until I had excision surgery by an endometriosis specialist. I have also had my appendix and gallbladder removed. I tried several different treatments for endometriosis, but couldn't find much if any relief. This is why I had multiple surgeries.
Unfortunately, this is the truth for so many who suffer with endometriosis. It's time we get endometriosis sufferers proper care from an endometriosis specialist and better options for treatment that aren't as invasive and life altering.
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.