Depression is something that nobody likes talking about, but it's such an important topic in the chronic illness community. Depression alone is a chronic illness and can also accompany other chronic illnesses like endometriosis, alpha-1 antitrypsin deficiency, PCOS, fibromyalgia, as well as others. The National Institute of Mental Health states, "depression is a common, but serious mood disorder. It causes severe symptoms that affect how you feel, think, and handle daily activities, such as sleeping, eating, or working". The National Institute of Mental Health estimates "17.3 million adults in the United States had at least on major depressive episode in 2017". The Anxiety and Depression Association of America says "depression is the leading cause of disability worldwide". Children can also suffer with depression. Signs and symptoms of depression from the National Institute of Mental Health include:
I know what it's like to feel this dark cloud over you and your life, thinking it's never going to get better. I have struggled the most with the after effects of having a hysterectomy. Choosing to have a hysterectomy was the hardest decision I have ever had to make. I always thought I would be able to get pregnant on my own to have a family. There were days I didn't want to get out of bed or interact with people. I wanted to isolate myself and kind of did for a while. The world has put the expectation on women that they are to get pregnant and have children. This makes women feel like if they can't or simply don't want to, they are inadequate as women. This is NOT the truth. If you feel this way, please know that you are MORE than your ability to have children and if you don't want to have children, that's your choice and it's okay if you don't want to have kids. Because of my struggles with my feelings/depression, I made the decision to go to counseling/therapy and have been going for about four years. It has helped me learn to cope with my feelings of having a different life than I thought I would because of chronic illness.
I want you to know that you are not alone. YOU matter. YOUR life matters. YOU are important. YOU are loved. YOU are worth it. Please reach out to someone if you need to talk or need help. It's okay to talk about your feelings and depression. It's important that we do so we can help each other and end the stigma.
I hope you find this helpful. Sending hugs and love.
Have you seen commercials or ads promoting birth control delivered to your home for free with most insurances without seeing a doctor?
Even though I'm no longer on birth control because I had a hysterectomy five years ago, I think it's important to talk about why it could be a terrible idea to have birth control pills delivered to your home without a prescription or with interacting with a medical professional online. I understand people don't want to spend time or money seeing a doctor or want to walk into a pharmacy, but this could lead to many problems.
Doctors perform medical exams that have been required for years before they would prescribe birth control pills. There are different types of birth controls available on the market today, so how does a person choose which one is best for them without medical assistance? Pharmacists are trained in medication interactions and potentially side effects. If people aren't required to pick up their birth control as prescriptions in a traditional pharmacy, how will they be able to get medical assistance from those who are knowledgeable and spend years in school to learn this information?
What about those of us who have chronic illnesses like endometriosis, PCOS, and adenomyosis? What if we try a birth control that makes our symptoms worse? What if we experience side effects like a blood clot? Will our traditional doctors still see us even though they didn't prescribe the birth control we are currently taking or will their ego get in the way?
I feel like these are all relevant questions that we should be having as the birth control market looks like its transitioning from requiring prescriptions to anyone being able to purchase birth control over the counter.
The Pill Club
With The Pill Club, you can use your existing prescription or get a new one from one of their doctors. Everything is done online from the consultation to filling the prescription. They also advertise free gifts.
This article was published by the NY Times and details what someone saw at Nurx while working there https://www.nytimes.com/2019/04/26/technology/nurx-birth-control-pills-online-womens-health.html
Nurx is a company that sells prescription drugs online, which to me is red flag number 1. Prescription medications, in my opinion, should not be able to be purchased online without interacting with a medical professional in person. There is a reason there are federal and state laws in place to regulate prescription drug sales. He said he had no pharmacy training and that they kept inventory of these prescription birth controls just like a pharmacy does. He also said that their priority was growth.
Since this article, Nurx published it's own article about these claims that were made. I understand they are trying to have affordable care for everyone, which is important. I believe everyone should have access to healthcare; it should be a human right. In the article, they state that a pharmacist is part of their team, which I think is beneficial. But what about patient examinations? In the article, they do say that they turn patients away if they feel they aren't a good fit for telemedicine. What if someone just thinks they have heavy periods and haven't been diagnosed with a disease? Will they be turned away or prescribed birth control via telemedicine?
Here is the article: https://medium.com/@Nurx/setting-the-record-straight-34d01beffa37
Doctors can now see patients online, but couldn't this dangerous? I can understand seeing a therapist/counselor online as this can be very beneficial for patients. But how do you see a gynecologist online? Should any doctor be able to prescribe birth control, especially to patients that have chronic illnesses like endometriosis, PCOS, and adenomyosis?
According to GoodRx, California, Colorado, Hawaii, Maryland, New Hampshire, New Mexico, Oregon, Tennessee, Utah, Washington, and Washington D.C no longer require a prescription to get birth control.
This gives people easier access to purchase. Should anyone be able to buy any type of birth control over the counter? This could mean insurance won't be billed and the cost would be out of pocket.
What are your thoughts on this? Leave them below!
I hope you find this information helpful.
(picture from simplehealth.com/blog)
Pelvic floor physical therapy is a treatment option available that may help with pain related to endometriosis, polycystic ovary syndrome (PCOS), interstitial cystitis (IC), and other illnesses that can lead to pelvic floor dysfunction. It's understandable that those who are suffering with endometriosis can have pelvic floor dysfunction as it's hard to relax when your abdomen and/or other areas are in constant pain.
I was diagnosed with endometriosis in 2010 and never heard to words 'pelvic floor physical therapy' until 2013 from a doctor at the Mayo Clinic. No gynecologist had even mentioned it to me before this time. When I first heard it, I had mixed feelings about it, but I was also desperate to be out of pain. I made an appointment with a pelvic floor physical therapist. The closest one to me is about a 6 hour round trip.
I first started going once a week because my physical therapist felt this was the best option for me until I could get rid of some of my spasming and pain. She did an initial assessment for my first appointment to see where I was so we could compare it when I was discharged and hopefully see improvement. During each appointment, she did internal biofeedback and connective tissue manipulation. Internal biofeedback helps patients to learn how to relax their pelvic floor and strengthen it. Something that a lot of people who have pelvic floor spasms struggle to do is relax because of disease or trauma. This is why every time I had a Papsmear, I would be in excruciating pain because I was unable to relax before they started the exam. In my case, the biofeedback sensor was connected to my therapist's computer and inserted vaginally. A graph displayed to show how relaxed my pelvic floor was, which was very little during my first appointment. She would do stretches and exercises with me to help me learn how to relax as well as send me home with some to do to help in between sessions.
Connective tissue manipulation involves stretching tissue to allow for more mobility and blood flow. She used this technique from my back and my stomach to my thighs. This would also help decrease my pelvic floor spasms because everything is connected. It can be difficult to do this on yourself because when you are rubbing your skin and feel pain, we tend to stop because we want the pain to stop.
Pelvic floor physical therapists may recommend that you purchase a dilator to help with stretching at home as mine did and it was helpful.
Heal Pelvic Pain: A Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence, IBS, and Other Symptoms Without Surgery by Amy Stein, M.P.T. is a great book that my pelvic floor physical therapist recommended that I read.
Personally, I think anyone who has surgery, pelvic disease, or gives birth should be referred to a pelvic floor physical therapist because these can all be traumatic to the pelvic area.
After about six months of going to pelvic floor physical therapy, I was discharged because my spasms had decreased significantly. However, some of my abdominal pain was still there because I had endometriosis on my ovaries. This was before I had my hysterectomy. I'm so thankful for my pelvic floor physical therapist as she made me feel comfortable during each of my appointments and was able to help me decrease my pain. I still do some of the stretches at home six years later.
Talk to your doctor about referring you to a pelvic floor physical therapist if you think it would be helpful for you.
If you do go to pelvic floor physical therapy, I want you to know kind of what to expect, there is nothing wrong with you, and that you are not alone. I felt so alone because at the time, I hadn't even heard of it let alone know anyone who had went or was going.
Let me know if you have any questions!
I hope you find this information helpful.
Picture from Amazon
I think when people hear that someone has a chronic illness there's a stigma and we automatically get stereotyped. I want to share some myths that I have seen the chronic illness community have to face and fight alongside their illness.
I hope you find this information helpful.
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.
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.