It can be hard to decipher what's true and helpful and what is false and spam in the endometriosis medical community, especially for those who have just been diagnosed. I think it's important to know as much information as possible upfront as it's something I wish I would have known.
ANYTHING that claims to be a cure for endometriosis is spam and should be ignored. Medical professionals have some theories about the cause of endometriosis, but as of right now they DO NOT know the direct cause of the disease even though there have been some theories ruled out. How can you have a cure for a disease when you don't know what causes it? If there was a cure for endometriosis, I along with at least 176 million people worldwide who suffer with it would be SCREAMING it from the roof tops! At the end of the day, anyone claiming to have a cure for endometriosis is only trying to take your money. They do not have your best interest at heart.
There are things that may help reduce inflammation and pain, but they will not cure endometriosis. Excision surgery is our best weapon against endometriosis as endometriosis specialists use this technique to cut the diseased tissue rather than burning it. Excision surgery has the highest success rate of all other treatment forms.
I checked my filtered folder on Facebook about a week ago, which I didn't know was a thing and saw this message. This in turn prompted this blog post in hopes that it would help you to decipher what's true about endometriosis and what's spam. This message was sent almost three years before my book was published. There are so many things wrong with this message. I'm glad I didn't know about this message on the date it was sent to me because it was sent six months after my excision surgery with an endometriosis specialist. Unfortunately, I don't know who sent this message or they would be getting an ear full.
Another form of spam that I feel like needs to be addressed is AbbVie/SpeakEndo/Lupron/Orilissa. I've seen ads that say something like "click here to find out more about a new drug for endometriosis" and when you click on it, it has something to do with AbbVie/SpeakEndo/Lupron/Orilissa. Personally, I think all of the information should be presented like the name of the drug and company before someone clicks on it. But they don't do that because they want to be deceitful. They want people to click on the ad and honestly, get their hopes up. Unfortunately, drug companies do not have the best intentions for those who suffer with endometriosis. It's about how much money they can make off of us. For one, there's not enough data to support that Orilissa is a new and improved drug for endometriosis as it wasn't studied long enough to gather all of the necessary data before the FDA approved. Two, AbbVie has lawsuits against them for how they have tried to get Lupron in patients' hands so what's to stop them from continuing to do the same with Abbvie when they can continue to profit?
Things like diet, supplementation, and exercise may help decrease pain and other symptoms, but they aren't going to diminish endometriosis implants.
We spend so much money on treatments and are extremely desperate to find something that will diminish or eradicate our pain. It's awful that there are people out there preying on us to make money rather than help, but it's our reality and something we have to be on the lookout for.
Have you ever received a message similar to mine? Have you ever been told something would cure you of endometriosis? Leave a comment below and let me know your thoughts.
I hope you find this information helpful.
Have you ever heard of The Spoon Theory?
Do you know what it means?
Early on after being diagnosed with my first chronic illness endometriosis, I came across "The Spoon Theory". So many of us who suffer with chronic illness use 'spoons' to talk about how much energy it will take us to do a certain activity like take a shower, fold laundry, go to the grocery store, go to doctor appointments, and so much more. We have to plan what activities we do when because if we do too much in one day, we will be exhausted and pay for it the next day. This is something a healthy person doesn't have to think about often.
"The Spoon Theory" is an article written by Christine Miserandino that describes her story with chronic illness and an analogy she began using to try to convey her energy level and how she felt to others. You can find the Spoon Theory here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
In the article, she gives her friend 12 spoons and immediately her healthy friend wants more spoons. Don't we all! Christine started taking away one spoon for each activity she described starting with getting out of her bed first thing in the morning. When it was time to go to work, her friend had half of her spoons left and honestly, should have probably had less because some activities require more than one spoon or energy. I know sometimes when I take a shower, I feel like I've used three spoons!
Anyway, by the time Christine's friend arrived at work, she started having to make decisions about what she was going to do while at work, for dinner, and the rest of the evening; decisions she had probably never thought twice about making before. After this, Christine knew her friend understood more because her demeanor changed. I encourage everyone, whether you have a chronic illness or know someone with one to read "The Spoon Theory" as it will help everyone understand what chronic illness sufferers go through every day. When I first came across "The Spoon Theory", I had my family read it to try to help them understand how I felt when I was tired/exhausted and why I plan as much of my day as possible. It put how I was and continue to feel in much better words than I could.
I hope you find this information helpful.
(picture from patientsrising.org)
Setting boundaries can be extremely difficult, especially when suffering with chronic illness. Having a chronic illness doesn't mean we don't want to be included in plans with our family and friends. It means that when asked to do something, we may have to turn it down because we're in so much pain or experiencing other symptoms related to our pain.
With chronic illness, you never know when symptoms are going to pop up or worsen, which isn't our fault. But, we still feel guilty if we have to cancel plans or unable to do something. It's OKAY to say NO. If you say yes to something and then feel miserable later wishing you hadn't said yes, you are hurting yourself. Nobody knows how you feel so it's important to speak up for yourself. Boundaries ARE healthy and necessary. Physically, mentally, and emotionally one person can't say yes to everything in life. We have to decide for ourselves no I don't want this in my life. An example: you get asked to go hiking, but don't feel up to or like the idea of hiking. This is a boundary, you're not going hiking. So you say something like "no I don't want to go hiking or feel up to it, but thank you so much for asking".
Some things we have to do no matter what like eat, sleep, etc. We don't have a choice in that, but we do have a choice with how we spend our time and with who. It's okay to help your friends and family. It's not okay to let them walk all over you.
One boundary that I've set is scheduling time for myself, usually watching Netflix. I usually go to my room around 9pm and if I don't go to sleep then, I'm in my room watching Netflix or listening to music by myself. I do a lot during the day to help me and my family so scheduling me time has helped me relax and decrease my stress, which is a boundary. Another boundary I've set for myself (probably because of my health) is not agreeing to plans until the day before to see how I feel. I say something like "I would love to do that! Is it okay if I let you know the day before if I feel up to it?". That way I'm not committing to something and don't have to back out of plans if I don't feel up to it. I can talk with the person the day before or the day of if there's enough time and say something like "I'm so sorry I don't feel up to it. Can we try another day?". It's also important to set boundaries for you and people who may be stressful, toxic, or draining. You only get one life and have to make yourself a priority.
Once you've set a boundary, you have to enforce it. So for my example with going to my room at 9pm, if I don't do that, I might not get time to myself that day and my suffer physically, mentally, or emotionally because of it. That only hurts me. If you say you don't want to go hiking and someone tries talking you into it, you have the choice to either stand by your boundary or cave and go hiking. Also, it's important that you don't feel guilty when you set boundaries. At the beginning you may feel guilty, but it's important to stick with it as it will get easier with time.
Three books that I highly recommend anyone read that is struggling with boundaries are pictured below: Boundaries, Beyond Boundaries, and Safe People. I have struggled with boundaries my entire life so my counselor recommended that I read Boundaries. It helped me tremendously with how to effectively set boundaries and I hope it helps you, too. After writing this post, I think I'm going to go back and reread them!
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.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and upcoming book "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.