Researching is extremely important when you have a chronic illness. Unfortunately, we can't only rely on what our doctors tell us about our illness, prescriptions we should take, treatment options we should try, etc.
It's important that we do our own research and be our own advocate. It's exhausting and oftentimes a full time job making sure we go to the doctors we need to go to, getting diagnosed, and finding a doctor who agrees with the treatment options we want to try.
It's crucial to do research outside of one website, book, etc. The more research you do, the better. The information from multiple sources should match up. If you talk to your doctor about the research you find and they don't seem knowledgeable or agree with what you have found, find another doctor.
Wikipedia and Google are not reliable sources. I have also found the Mayo Clinic to not have accurate information about some illnesses. One place to start your research is with nonprofits for your illness. For example, trusted nonprofits for endometriosis would be the Endometriosis Research Center, Endometriosis Network of Canada, the Endometriosis Foundation of Houston, EndoWhat?, and for alpha-1 antitrypsin deficiency, it would be the Alpha-1 Foundation.
Another research avenue is to go to a specialist's website; for example the Center for Endometriosis Care as they specialize in endometriosis or pulmonologists who specialize in alpha-1 antitrypsin deficiency. Gynecologists are not knowledgeable about endometriosis and shouldn't be trusted to give you reliable information. Many doctors are not knowledgeable about alpha-1 antitrypsin deficiency so it's important to get information from a specialist.
Reading about what others have been through with the disease you have can be helpful, too. Oftentimes, patients who are well seasoned with their illness can be more knowledgeable than some doctors. Support groups for your illness may have reliable information as well.
The more research you do the better. Don't agree with any treatment you aren't 100% on board with and don't agree with a treatment you haven't researched. It's your body and you have to live with your decision for the rest of your life, your doctor doesn't and drug companies don't.
Back in 2011 when I first tried Lupron, I didn't do my own research and wish I had. I now have osteoporosis and I'm sure it's from the injection even though no doctor will admit that. I'm 28 years old and have the bones of a 60+ year old. Had I done research, I wouldn't have agreed to have it injected into my body. I trusted what my doctor told me and only went by that. This is why I am so adamant about everyone researching their chronic illness, treatment options, talking with others who have tried different treatments, etc.
I hope you find this information helpful.
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Not having these body parts (uterus, ovaries, and cervix) doesn't make you less of a woman. Being unable to bear children doesn't make you less of a woman. I know how hard it is to feel and realize this because I went through all of these feelings when I had my hysterectomy. It seemed like everyone was pregnant or already had kids and I was in my own little world of never being able to have children. People would say that I could adopt. Although well meaning, I still needed to process all of my feelings to be able to deal with not being able to ever become pregnant. It was a loss and something I had to grieve and still grieve. We may overhear someone talking in a store about something to do with children that may make us upset. Know that it's okay to grieve this loss at any point in your life. Grieving is a necessary part of life and isn't a straight line and your feelings are valid. People don't know what to say when something like this happens and I had to keep that in mind, too. I didn't and still don't want people to tip toe around me having a hysterectomy. It was hard, really hard and when I look back to the year 2014 when I had my hysterectomy, it was the darkest part of my life as I went through all of my feelings. I'm thankful for my family and friends who helped me deal with these feelings.
Here are things that I have done/do to help me cope with my feelings:
Here is a journal entry from 2015:
"I had to make the decision to have a hysterectomy for my own health and safety, but that did not make it any easier to deal with. I knew my chances of having kids was slim before my surgery, but now I will never know if I could have had children since I never tried. I felt like I had to make a choice between having kids or going to pharmacy school and I chose pharmacy school, but still could not finish pharmacy school even though I could not have kids now."
Here is a journal entry from the end of 2015
"Having to choose to have a hysterectomy at the young age of 23 is depressing enough, but having to explain this every time I go to a new doctor is a horrible experience each time. I have had nurses tell me that I am too young to be going through this. I do not need this constant reminder that I will never be able to get pregnant and will be missing out on that experience."
I still have to remind nurses at my current doctor that I've had a hysterectomy when they ask when my last period was. Can't they read my chart and see I've had a hysterectomy without asking every time?
I always wanted to have children and it’s something that I still struggle with, but I keep in my mind that there’s another purpose for me and practice these coping mechanisms when I see that I need them.
Five years later, I'm in a better place than I was when I first had my hysterectomy. I know it's what my body needed (everyone is different). I go to baby showers. I'm there when children are born, and I babysit. I can still be happy for someone else and sad for me at the same time. Growing up, everyone always told me that I would make a great mom because of how I am with children. I have been around children all of my life because one of my grandmother's was a full time babysitter and I became an aunt at 8 years old. I get on the child's level and play with them. Even now people tell me that (they may not know that I can't have children) and I don't let it bother me because one day I may be able to adopt and be a mother.
Is there something you do to cope that I didn't mention? Leave a comment below and let us know.
I hope you find this information helpful. Know you are not alone. Sending you hugs and love.
Picture from mskcc.org
Confidence is believing in yourself whether it's your health, your job/career, your ability to provide for yourself and your family. It's appreciating yourself and knowing you are right where you are supposed to be. Confidence doesn't equal having a huge ego. Being confident is a positive emotion.
Confidence is something that I struggle to have every day because I don't feel confident with my health and honestly don't know if I ever will. Confidence is something I had while dancing and in course work through high school. Having to quit jobs because I couldn't juggle it all while in so much pain and having some new health issue start up every time I get a job makes it hard to feel confident in my health. Having to cancel plans over and over decreases my confidence a little each time. Will I ever be able to keep every single plan I make with family, friends, and in business and not have to cancel because of my health?
It's hard to have confidence. It's hard to let yourself feel confident when you feel like your body is constantly letting you down or you feel like you are letting others down. Know that the only person's feelings you are responsible for are your own. You can't control how others feel or respond when you cancel. You know you are canceling because you don't feel well even if they don't believe you and that has to be good enough.
We deserve to be confident just as much as a healthy person. We are all equal and have to view ourselves this way to have confidence in ourselves. We can't see someone as being better than us because that diminishes our confidence. We all have strengths and weakness, but they are different and that's what makes us unique. It's important that we surround ourselves with others that bring positivity into our lives and help boost our confidence.
Self-care plays into confidence, too. Music helps me get pumped about something I'm working on (I'm listening to 90's Pop on Pandora right now!). Reading and writing help me deal with how I'm feeling and in that I get to help others, which also helps with my confidence. Some people find that makeup makes them more confident. The way you dress can help boost our confidence levels, too. I find myself changing out of my T-shirts into a more dressy shirt even if I'm running errands to help me feel better about myself and my body. It's important that you find things that make you confident, too.
I do have confidence in sharing my story, helping others, and know I'm right where I'm supposed to be to help people who are going through a similar journey. Know that you are not alone.
How do you deal with confidence? What do you do for self-care? Leave a comment below!
I hope you find this blog helpful in some way.
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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!
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.