Endometriosis is something that is viewed as a life sentence. An endless suffering. Unfortunately, due to the lack of education that doctors and other medical professionals receive, this is true far too often. So many women are coerced into numerous surgeries that frequently cause more harm than good.
I have been pain free from endometriosis for almost 6 years and counting. How is that possible? To start, I finally stopped believing all of the doctors who told me that the pain was "normal", and that some girls just have "bad periods". The day the game changed was the day that I was lying naked on a bathroom floor, having almost passed out from the pain. That was not normal, no matter how many doctors tried to tell me that it was. Within that week, I started researching. I researched everything that I possibly could about the symptoms I was experiencing, and all arrows pointed to endometriosis. I had almost every single symptom listed; things were finally starting to make some sense.
From there, I got into some groups on Facebook that were dedicated to endometriosis. I connected with a woman (so thankful for you, Jill!) who was able to direct me towards an expert that was somewhat close to me, geographically. I had learned that real specialists are few and far between, and finding someone local is often not possible. This doctor was in Boston, which was a reasonable travelling distance to me from upstate New York.
I contacted this doctor, had a brief initial consultation, and scheduled a real consultation appointment with him in Boston. I went to my consultation, scared out of my wits. I was only 21 at the time, and I was doing all of this without the help of my parents (because I hadn't told them, not due to any lack of desire to help on their part). We talked about my symptoms in depth, and he agreed that the signs indicated probable endometriosis. He told me that his intention, if I wanted to continue on with him, was to do a diagnostic laparoscopy and to also do excision if he found anything.
What is excision? Read about it here: http://centerforendo.com/lapex-laparoscopic-excision-of-endometriosis/
My research, persistence, sought-out connections, and selection of a true specialist are the components that led to my several years of being pain free. The fact that the only person that I let perform any kind of surgery or procedure on me was an endometriosis specialist is absolutely crucial, as is the fact that I had this surgery done at 21 years old. Early intervention and the involvement of an excision specialist can be the difference between prolonged suffering and being able to live your life, doing what you want to do every day without being limited by pain. It is absolutely possible, but we have to be our own advocates. The extreme majority of doctors (including gynecologists) are not taught about endometriosis, and often, the little that they are taught is outdated information.
Stand up for yourself, reach out, choose your doctors wisely, and act as if you value your well-being just as much as you would value your spouse's or child's. Fight for a future that IS possible.
I am proof.
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Wednesday, December 19, 2018
Tuesday, December 15, 2015
Response to: Ask The Dietitian: What’s The Deal With Shakeology? by Abby Langer
After coming across this on facebook today, I thought I'd add in my two cents.
I think the tone of this article was a little "high and mighty". To be frank, the entire second paragraph was childish and bitchy. That aside, I feel that there were some very critical things wrong here:
"You can’t fairly compare whole food to a drink." - You are very correct. Whole foods are definitely the best option for nutrition. Unfortunately, the vast majority of people struggle with that, for various reasons. For me, I have sensory/texture issues that make it so I cannot eat most fruits/vegetables without triggering my gag reflex... so Shakeology fills that gap in my nutrition for me. It's obviously a better alternative than not eating any fruits or vegetables at all, don't you think?
"The only thing Shakeology should be replacing, if anything, is $41 worth of crap food like the chips and chocolate bars that are in your pantry." - Also true. But you're failing to acknowledge that THAT is what people struggle with the most, in my experience. Do you have any idea how hard it would be for a person to go from eating junk foods all the time to being a perfect whole foods eater? That's completely unrealistic. There's nothing wrong with learning how to get there, and getting help in the process. And yes, my chocolate shake is MUCH healthier than any chocolate bar in someone's pantry. Does your chocolate bar have superfoods and probiotics in it? ;)
"Essentially these are protein shakes, but the 17 grams per shake is a bit below the 20-25 grams of protein that I recommend per meal." - It's not marketed as a protein shake, actually. And if any person is advocating that Shakeology is a protein shake, then they're misinformed or under-educated about it. Not to mention, you can easily kick that protein up to 20-25 grams by adding milk, peanut butter, yogurt, etc to your shake.
"Each shake has only 160 calories, which is about 340 calories short of an actual meal by my recommendations. You’re basically relying on 17 grams of protein to keep you full until your next meal or snack, and good luck to you." - Once again, almost everyone I know adds things to their shake (milk, fruits, veggies, etc), upping the caloric content. Secondly? Shakeology DOES keep me full, for about 2.5-3 hours, and I know for a fact that I'm not alone there.
"Something that does irk me about Shakeology, and I have to mention this, is the ‘Team Beachbody’ thing that it’s associated with. Can we please stop talking about beach bodies? A beach body is a body in a bathing suit. A fat body, a thin body, a pink, green, yellow, or orange body. Whatever body you have is your beach body. Let’s stop idealizing the ‘perfect bikini body’, because that BS doesn’t exist. Be the healthiest and happiest that you can be, and stop trying to fit into society’s warped vision of ‘beach body’, which we all know is unrealistic for 99% of us." - I'm sorry you're so angry about this and clearly feel attacked, but not ONE of the coaches on the team I'm a part of talks about getting a "perfect bikini body". We're all here to help you be the best version of you that you can be. Quite frankly, my entire business revolves around the fact that "skinny" isn't a goal you should have (#strongnotskinny , anyone?). A Beachbody IS a body on a beach. And you should be happy with that body and proud of it, no matter what it looks like, as long as it's healthy! That's why good coaches exist in this business. That's what we're here for. So please don't trash a company due to your incorrect views of it.
Shakeology isn't the healthiest thing ever on the planet Earth. But do you know what it IS? Way healthier than the majority of what people are eating on a daily basis. A wonderful source of vitamins and minerals that a lot of people lack. A great source of pre- and probiotics to help your digestive system. A great substitute for the breakfast that I don't eat. A good substitute for fruits and vegetables that I'm lacking due to my texture issues. A source of nutrients that's helped my hair and nails be so much stronger than they ever were. An energy providing drink that's a clearly way better option than soda. The only thing that's ever been able to even TOUCH my levels of fatigue when my body spends too much time attacking itself.
And it's delicious. I rest my case. :)
I think the tone of this article was a little "high and mighty". To be frank, the entire second paragraph was childish and bitchy. That aside, I feel that there were some very critical things wrong here:
"You can’t fairly compare whole food to a drink." - You are very correct. Whole foods are definitely the best option for nutrition. Unfortunately, the vast majority of people struggle with that, for various reasons. For me, I have sensory/texture issues that make it so I cannot eat most fruits/vegetables without triggering my gag reflex... so Shakeology fills that gap in my nutrition for me. It's obviously a better alternative than not eating any fruits or vegetables at all, don't you think?
"The only thing Shakeology should be replacing, if anything, is $41 worth of crap food like the chips and chocolate bars that are in your pantry." - Also true. But you're failing to acknowledge that THAT is what people struggle with the most, in my experience. Do you have any idea how hard it would be for a person to go from eating junk foods all the time to being a perfect whole foods eater? That's completely unrealistic. There's nothing wrong with learning how to get there, and getting help in the process. And yes, my chocolate shake is MUCH healthier than any chocolate bar in someone's pantry. Does your chocolate bar have superfoods and probiotics in it? ;)
"Essentially these are protein shakes, but the 17 grams per shake is a bit below the 20-25 grams of protein that I recommend per meal." - It's not marketed as a protein shake, actually. And if any person is advocating that Shakeology is a protein shake, then they're misinformed or under-educated about it. Not to mention, you can easily kick that protein up to 20-25 grams by adding milk, peanut butter, yogurt, etc to your shake.
"Each shake has only 160 calories, which is about 340 calories short of an actual meal by my recommendations. You’re basically relying on 17 grams of protein to keep you full until your next meal or snack, and good luck to you." - Once again, almost everyone I know adds things to their shake (milk, fruits, veggies, etc), upping the caloric content. Secondly? Shakeology DOES keep me full, for about 2.5-3 hours, and I know for a fact that I'm not alone there.
"Something that does irk me about Shakeology, and I have to mention this, is the ‘Team Beachbody’ thing that it’s associated with. Can we please stop talking about beach bodies? A beach body is a body in a bathing suit. A fat body, a thin body, a pink, green, yellow, or orange body. Whatever body you have is your beach body. Let’s stop idealizing the ‘perfect bikini body’, because that BS doesn’t exist. Be the healthiest and happiest that you can be, and stop trying to fit into society’s warped vision of ‘beach body’, which we all know is unrealistic for 99% of us." - I'm sorry you're so angry about this and clearly feel attacked, but not ONE of the coaches on the team I'm a part of talks about getting a "perfect bikini body". We're all here to help you be the best version of you that you can be. Quite frankly, my entire business revolves around the fact that "skinny" isn't a goal you should have (#strongnotskinny , anyone?). A Beachbody IS a body on a beach. And you should be happy with that body and proud of it, no matter what it looks like, as long as it's healthy! That's why good coaches exist in this business. That's what we're here for. So please don't trash a company due to your incorrect views of it.
Shakeology isn't the healthiest thing ever on the planet Earth. But do you know what it IS? Way healthier than the majority of what people are eating on a daily basis. A wonderful source of vitamins and minerals that a lot of people lack. A great source of pre- and probiotics to help your digestive system. A great substitute for the breakfast that I don't eat. A good substitute for fruits and vegetables that I'm lacking due to my texture issues. A source of nutrients that's helped my hair and nails be so much stronger than they ever were. An energy providing drink that's a clearly way better option than soda. The only thing that's ever been able to even TOUCH my levels of fatigue when my body spends too much time attacking itself.
And it's delicious. I rest my case. :)
Wednesday, August 26, 2015
Time to return..
When I'm feeling lost, I usually end up back here. I started this blog to chronicle my journey with endometriosis, but that't not really a part of my life anymore. That's been confusing to some people, because, no, there is not a cure. But there is a choice. I chose to have excision surgery, and my pain has almost completely subsided. Because of that, I chose to not have endo be a big part of my life. Sure, it's always on the back burner, but it doesn't get to control my life. It only ever dragged me down, and life has enough challenges on it's own without me letting this be another challenge. I don't intend for that to be offensive, I promise.
I think it's time for me to start chronicling my fitness journey instead, since that's way more relevant to my current life.
Just over a year ago, a good friend of mine got me to try Shakeology. I hated it for the first week or so. It's now 13 months later, and I can't imagine my life without it. I used to need to take a nap every single day, or else I couldn't make it through the day. My fatigue was nothing short of crippling. I was so tired that working out wasn't even an option. If I didn't have the energy to make it through a normal day, how on earth was I supposed to have the energy to make it through a workout, too?
I'm so thankful that my friend introduced me to a different way of living. My progress has not been huge, and it has not been fast. But it has been a hell of a learning experience, and I'm still continuing to learn and make little changes every day. The biggest changes have been in my heart and in my mind, and the stronger that I make those, the easier it will be for my body to follow.
If you're interested in following my journey on a more personal level, you can find me at facebook.com/coachmissyr
I think it's time for me to start chronicling my fitness journey instead, since that's way more relevant to my current life.
Just over a year ago, a good friend of mine got me to try Shakeology. I hated it for the first week or so. It's now 13 months later, and I can't imagine my life without it. I used to need to take a nap every single day, or else I couldn't make it through the day. My fatigue was nothing short of crippling. I was so tired that working out wasn't even an option. If I didn't have the energy to make it through a normal day, how on earth was I supposed to have the energy to make it through a workout, too?
I'm so thankful that my friend introduced me to a different way of living. My progress has not been huge, and it has not been fast. But it has been a hell of a learning experience, and I'm still continuing to learn and make little changes every day. The biggest changes have been in my heart and in my mind, and the stronger that I make those, the easier it will be for my body to follow.
If you're interested in following my journey on a more personal level, you can find me at facebook.com/coachmissyr
Monday, March 30, 2015
Stories Like Mine
I know this is the first post I've done in a long while. I don't like writing without inspiration, because that leads to boring posts.
Saturday, March 28th, 2015 was the 2nd Annual EndoMarch. This past weekend was filled with meetings, reunions, laughs, tears, and lots and lots of stories. It's the stories that have driven me to write this post.
The vast majority of women who suffer from Endometriosis all have a similar story. 10+ years to get diagnosed, many times being misdiagnosed, numerous surgeries, most of them unhelpful, unnecessary hysterectomies, you name it. They're horror stories. They break your heart into pieces and make you cry. No one should have to have a story like that. No one deserves it.
But their stories are not at all like mine.
Yes, it took me ~6 years to get diagnosed, and that's far too long. But I was never misdiagnosed, I never had drugs forced upon me, and I did not let any doctor/surgeon touch me until I found a specialist. When I let myself acknowledge that was I was feeling was NOT normal, I started researching. So much researching. I was blessed enough to have an endosister find me, and let me ask her so many questions, share my fears, concerns, and confusion with her. She directed me to her excision surgeon, who was in Boston. I called and set up a consultation, and right then & there, we agreed to proceed with surgery to diagnose and excise, if endo was found. That's right. I had my diagnostic lap & excision done in the same procedure. I have only had one surgery. I have never been on Lupron. I have not had any organs removed. This is not to say that I was never told it was all in my head, or that I just have "bad periods", because I was told all of that. But that's nothing compared to the medical torture that other women have been put through.
I want there to be more stories like mine. I wish I could make all future endosisters' stories like mine. I had access to the information I needed, and I'm thankful that I knew enough to go out and look for it. Not everyone is that lucky. I'm unsure how to reach the girls and women who need help before they go under the knife. I'm unsure how to get through to people, when they're being told incorrect information from their doctors.
Early diagnosis and excision is CRUCIAL when it comes to regaining your best quality of life. The longer you wait, the more irreversible damage is done. The longer endometriosis is allowed to ravage your body, the more scar tissue is formed, and even the best of doctors can only do so much at that point. We need to educate younger, and we need to push that the first person to open you up is a skilled expert, not your regular OBGYN. Sure, your regular doctor can diagnose endometriosis, but that's all they can do to help you. Ablation is not helpful, and is not successful, long term. Only a specialist should be allowed to do procedures on you, or else you're just putting yourself through an unnecessary surgery.
I don't know how I'm going to do it, but I want to make a change.
Saturday, March 28th, 2015 was the 2nd Annual EndoMarch. This past weekend was filled with meetings, reunions, laughs, tears, and lots and lots of stories. It's the stories that have driven me to write this post.
The vast majority of women who suffer from Endometriosis all have a similar story. 10+ years to get diagnosed, many times being misdiagnosed, numerous surgeries, most of them unhelpful, unnecessary hysterectomies, you name it. They're horror stories. They break your heart into pieces and make you cry. No one should have to have a story like that. No one deserves it.
But their stories are not at all like mine.
Yes, it took me ~6 years to get diagnosed, and that's far too long. But I was never misdiagnosed, I never had drugs forced upon me, and I did not let any doctor/surgeon touch me until I found a specialist. When I let myself acknowledge that was I was feeling was NOT normal, I started researching. So much researching. I was blessed enough to have an endosister find me, and let me ask her so many questions, share my fears, concerns, and confusion with her. She directed me to her excision surgeon, who was in Boston. I called and set up a consultation, and right then & there, we agreed to proceed with surgery to diagnose and excise, if endo was found. That's right. I had my diagnostic lap & excision done in the same procedure. I have only had one surgery. I have never been on Lupron. I have not had any organs removed. This is not to say that I was never told it was all in my head, or that I just have "bad periods", because I was told all of that. But that's nothing compared to the medical torture that other women have been put through.
I want there to be more stories like mine. I wish I could make all future endosisters' stories like mine. I had access to the information I needed, and I'm thankful that I knew enough to go out and look for it. Not everyone is that lucky. I'm unsure how to reach the girls and women who need help before they go under the knife. I'm unsure how to get through to people, when they're being told incorrect information from their doctors.
Early diagnosis and excision is CRUCIAL when it comes to regaining your best quality of life. The longer you wait, the more irreversible damage is done. The longer endometriosis is allowed to ravage your body, the more scar tissue is formed, and even the best of doctors can only do so much at that point. We need to educate younger, and we need to push that the first person to open you up is a skilled expert, not your regular OBGYN. Sure, your regular doctor can diagnose endometriosis, but that's all they can do to help you. Ablation is not helpful, and is not successful, long term. Only a specialist should be allowed to do procedures on you, or else you're just putting yourself through an unnecessary surgery.
I don't know how I'm going to do it, but I want to make a change.
Saturday, March 15, 2014
EndoMarch2014: The Aftermath
So, I'm kind of terrified to write this post. I guess that's my disclaimer.
Going down to DC for the EndoMarch did not have the effect on me that I expected.
On Wednesday, I left my house to drive down to Washington DC by myself (mistake #1). The drive down wasn't bad, there was decent weather and not too much traffic until I was almost to the city. Most of the drive, I was thinking about the fact that I wished I wasn't going alone. I kept trekking on, though. Tried to think about all of the people that I was going to be meeting once I got down there.
I got to my hotel in DC, showered, and got myself ready to go to Local 16, where a bunch of people were meeting up that night. I walked to the restaurant and stood outside the door, too scared to go in, wishing I had someone there to help me through this. I finally walked through the door and was pointed in the right direction. Anxiety kicked into high drive, and I was brought around the room while being introduced to people. After standing in the restaurant for a few minutes, just listening to the bustle and conversations around me, it didn't take long for the disconnect to set in. I didn't feel like I was connected to these women like I thought I would feel. There was so much discussion of multiple surgeries and daily pain, and that's not my life anymore. Following the feeling of disconnect was an immense feeling of guilt. Here are all these women who are suffering every day, and I had one surgery that basically gave me my life back? How is that fair? It made me feel like I didn't belong there. Like I wasn't really one of them because I wasn't suffering the same way. I did my best to put on a smile and socialize as much as I could. But I was honestly so thankful when it was time to go back to my hotel for the night.
Thursday morning comes, and it's time to get ready to go to registration and the symposium. The symposium was very interesting, and it was nice to hear about some research that's being done behind the scenes. Dr. Camran Nezhat (among the other doctors) was very inspirational to listen to. After the symposium, we went outside to the National Mall for a ceremony, unfortunately outdoors. There were videos of interviews, speakers, and a musical performance by Sheryl Crow. We then walked from where we were back to the auditorium that the symposium was at for the reception. In all honesty, I stayed at the reception just long enough for it to be socially acceptable, and then I went back to my hotel room and went to sleep, trying not to think about how I was feeling. While I was so grateful and happy to have spent the day with an incredibly wonderful person that I'm so glad to have finally met, I was filled with so many more unpleasant feelings.
I managed to hold most of these feeling off until the drive home. It was once I finally got out of the heart of DC that I broke down and started crying. All I could think about was how stupid I was for thinking that I would be able to handle that event without anyone there with me. There were multiple times during my drive home where the tears just started rolling down my face. I just wanted to get home. It was a heartbreaking couple of days.
I feel terrible for writing about having a bad time while I was down there, but I really think that I needed to let this out. I don't want anyone that reads this who was down in DC and met me to take any of this personally. This was all about me, and my feelings of loneliness and abandonment. It truly was nice to meet a lot of my endosisters, and some of you were incredibly inspirational. I just know that next year, there's no way I'm going to try to do it alone again.
Going down to DC for the EndoMarch did not have the effect on me that I expected.
On Wednesday, I left my house to drive down to Washington DC by myself (mistake #1). The drive down wasn't bad, there was decent weather and not too much traffic until I was almost to the city. Most of the drive, I was thinking about the fact that I wished I wasn't going alone. I kept trekking on, though. Tried to think about all of the people that I was going to be meeting once I got down there.
I got to my hotel in DC, showered, and got myself ready to go to Local 16, where a bunch of people were meeting up that night. I walked to the restaurant and stood outside the door, too scared to go in, wishing I had someone there to help me through this. I finally walked through the door and was pointed in the right direction. Anxiety kicked into high drive, and I was brought around the room while being introduced to people. After standing in the restaurant for a few minutes, just listening to the bustle and conversations around me, it didn't take long for the disconnect to set in. I didn't feel like I was connected to these women like I thought I would feel. There was so much discussion of multiple surgeries and daily pain, and that's not my life anymore. Following the feeling of disconnect was an immense feeling of guilt. Here are all these women who are suffering every day, and I had one surgery that basically gave me my life back? How is that fair? It made me feel like I didn't belong there. Like I wasn't really one of them because I wasn't suffering the same way. I did my best to put on a smile and socialize as much as I could. But I was honestly so thankful when it was time to go back to my hotel for the night.
Thursday morning comes, and it's time to get ready to go to registration and the symposium. The symposium was very interesting, and it was nice to hear about some research that's being done behind the scenes. Dr. Camran Nezhat (among the other doctors) was very inspirational to listen to. After the symposium, we went outside to the National Mall for a ceremony, unfortunately outdoors. There were videos of interviews, speakers, and a musical performance by Sheryl Crow. We then walked from where we were back to the auditorium that the symposium was at for the reception. In all honesty, I stayed at the reception just long enough for it to be socially acceptable, and then I went back to my hotel room and went to sleep, trying not to think about how I was feeling. While I was so grateful and happy to have spent the day with an incredibly wonderful person that I'm so glad to have finally met, I was filled with so many more unpleasant feelings.
I managed to hold most of these feeling off until the drive home. It was once I finally got out of the heart of DC that I broke down and started crying. All I could think about was how stupid I was for thinking that I would be able to handle that event without anyone there with me. There were multiple times during my drive home where the tears just started rolling down my face. I just wanted to get home. It was a heartbreaking couple of days.
I feel terrible for writing about having a bad time while I was down there, but I really think that I needed to let this out. I don't want anyone that reads this who was down in DC and met me to take any of this personally. This was all about me, and my feelings of loneliness and abandonment. It truly was nice to meet a lot of my endosisters, and some of you were incredibly inspirational. I just know that next year, there's no way I'm going to try to do it alone again.
Wednesday, January 22, 2014
EndoMarch2014: Week 2
What does EndoMarch2014 mean to me?
It means a chance to have a voice. Not just for myself, but for the women who can't/won't/don't know enough to speak up. To have a voice for the women who's lives have been taken over by this disease. For the women who had to wait a decade for a diagnosis.
I got "lucky". I was diagnosed 5 years after I started suffering, and about 1 year after I started suspecting that endometriosis was the culprit. I got diagnosed at 21 years old. I've only had one surgery, and due to excision done by a true endo specialist, I've been almost completely pain free since I healed. Fatigue is my biggest hurdle since surgery. But just because I got "lucky" does not mean that this event means any less to me than someone who's been suffering for 20 years. I still push for awareness, change, and education.
Awareness - Most people don't know what endometriosis is, and have never even heard of it. When it comes to women's health issues, if it's not cancer, people have never heard of it. Endometriosis may not be cancer, but that doesn't mean it's not a serious disease. Endo can completely end your life as you know it, leaving you exhausted, bedridden, and in constant pain. There are even recorded cases of endo being fatal. Sounds to me like it's a condition that the world should be aware of.
Change - There needs to be a change in the way most doctors deal with women complaining about pelvic pain. Saying "that's normal" or "you just have bad cramps" is not okay. Being told that "it's all in your head" is revolting. No one deserves to be told that they're imagining this pain. There needs to be a change in the availability of good medical care. No woman should have to go into such debt because there's not a single endo specialist covered by their insurance. The world needs to change and start realizing that these things are serious problems.
Education - I feel so, so strongly about this aspect. So much of my free time is spent doing research and educating myself about endometriosis. Even before I was diagnosed, I spent countless hours learning about it. I feel that my dedication played a huge part in getting diagnosed so quickly once I suspected endo. I had prepared myself with what to say, and found a specialist to go to without any guidance from my regular OBGYN. I was not going to be ignored. I was not going to be put on yet another different kind of birth control. I was going to leave with a promise of surgery, and faith in a doctor. All too many women are so trusting of their doctors. It's scary to live in a world where we can't always trust doctors, but so many doctors are very uneducated about endometriosis. This leads to many women being uneducated about the medical condition that is wreaking havoc inside their own body. There are too many women being told that birth control, Lupron, or a hysterectomy will end their suffering. Birth control does not stop or reduce the growth of endometriosis. Lupron is a terrifying, menopause-inducing chemotherapy drug with very real, lasting side effects. A hysterectomy (if endometriosis is truly your only cause of pain) has a decent chance of doing absolutely nothing to relieve you of your pain, since endo resides outside of the uterus. These are things that we (and doctors) should all be aware of. Talking about these things isn't using "scare tactics" as I've been accused of, this is reality.
EndoMarch2014 is about coming together. It's about me and my endosisters uniting as one to bring awareness and attempt reform. It is so important for us to band together and fight for what's right. This is an incredible movement to be a part of, and I hope that it's just the beginning of my journey of advocacy.
It means a chance to have a voice. Not just for myself, but for the women who can't/won't/don't know enough to speak up. To have a voice for the women who's lives have been taken over by this disease. For the women who had to wait a decade for a diagnosis.
I got "lucky". I was diagnosed 5 years after I started suffering, and about 1 year after I started suspecting that endometriosis was the culprit. I got diagnosed at 21 years old. I've only had one surgery, and due to excision done by a true endo specialist, I've been almost completely pain free since I healed. Fatigue is my biggest hurdle since surgery. But just because I got "lucky" does not mean that this event means any less to me than someone who's been suffering for 20 years. I still push for awareness, change, and education.
Awareness - Most people don't know what endometriosis is, and have never even heard of it. When it comes to women's health issues, if it's not cancer, people have never heard of it. Endometriosis may not be cancer, but that doesn't mean it's not a serious disease. Endo can completely end your life as you know it, leaving you exhausted, bedridden, and in constant pain. There are even recorded cases of endo being fatal. Sounds to me like it's a condition that the world should be aware of.
Change - There needs to be a change in the way most doctors deal with women complaining about pelvic pain. Saying "that's normal" or "you just have bad cramps" is not okay. Being told that "it's all in your head" is revolting. No one deserves to be told that they're imagining this pain. There needs to be a change in the availability of good medical care. No woman should have to go into such debt because there's not a single endo specialist covered by their insurance. The world needs to change and start realizing that these things are serious problems.
Education - I feel so, so strongly about this aspect. So much of my free time is spent doing research and educating myself about endometriosis. Even before I was diagnosed, I spent countless hours learning about it. I feel that my dedication played a huge part in getting diagnosed so quickly once I suspected endo. I had prepared myself with what to say, and found a specialist to go to without any guidance from my regular OBGYN. I was not going to be ignored. I was not going to be put on yet another different kind of birth control. I was going to leave with a promise of surgery, and faith in a doctor. All too many women are so trusting of their doctors. It's scary to live in a world where we can't always trust doctors, but so many doctors are very uneducated about endometriosis. This leads to many women being uneducated about the medical condition that is wreaking havoc inside their own body. There are too many women being told that birth control, Lupron, or a hysterectomy will end their suffering. Birth control does not stop or reduce the growth of endometriosis. Lupron is a terrifying, menopause-inducing chemotherapy drug with very real, lasting side effects. A hysterectomy (if endometriosis is truly your only cause of pain) has a decent chance of doing absolutely nothing to relieve you of your pain, since endo resides outside of the uterus. These are things that we (and doctors) should all be aware of. Talking about these things isn't using "scare tactics" as I've been accused of, this is reality.
EndoMarch2014 is about coming together. It's about me and my endosisters uniting as one to bring awareness and attempt reform. It is so important for us to band together and fight for what's right. This is an incredible movement to be a part of, and I hope that it's just the beginning of my journey of advocacy.
Monday, January 13, 2014
EndoMarch2014: Week 1
Over the past year, I've witnessed an incredible desire to bring awareness to endometriosis. This desire should be prevalent, considering this disease is way more common than you may think.
Since I got diagnosed in February of 2013 (we're almost at the 1 year anniversary!), I've been on quite the journey. I've been in contact with some amazing women who are not only supportive, but incredibly knowledgeable as well. They don't just have the ability to comfort, they possess the knowledge to know when to tell you that going to the doctor isn't giving in. This journey has also led me to drift away from some people that I used to be close with. It's showing me some peoples' true colors. But, if these people were meant to be in my life, they would still be here. Endo has shown me who really cares, and who isn't willing to put up with the complications of being friends with someone who has a chronic illness. A huge positive outcome of this journey is how closely I now know my body. Endo has made me pay such close attention to my body that I feel so in tune with it. I know what's causing the physical feelings, and I'm working on learning how to control them to whatever extent I can.
What is EndoMarch2014? It's a much needed awareness event. It's a time for sufferers, doctors, nurses, family, friends, and supporters to all come together on one day to being awareness to this illness. This needs to stop being an unheard of condition, and there needs to stop being a taboo towards talking about a woman's reproductive system. This needs to stop being a condition that, on average, takes 10 years to diagnose. Can you imagine, suffering for 10 whole years without even knowing what's wrong with you? Being told that it's all in your head? Endo doesn't just cause physical pain from the internal bleeding and scar tissue formation. It can also cause anxiety, depression, and a wealth of other mental health issues, because one person can only be told their crazy so many times. It's like you're being punished for being ill, as if you didn't feel as though you were being punished already.
This event is taking place on March 13th, all across the globe. In the US, we will be meeting in Washington DC. We are gathering to bring awareness to this disease, to bring awareness to the need of better medical training, to bring awareness to the necessity of more education. We're gathering to make people aware.
We need to be heard, and I am so proud to be a part of this.
Since I got diagnosed in February of 2013 (we're almost at the 1 year anniversary!), I've been on quite the journey. I've been in contact with some amazing women who are not only supportive, but incredibly knowledgeable as well. They don't just have the ability to comfort, they possess the knowledge to know when to tell you that going to the doctor isn't giving in. This journey has also led me to drift away from some people that I used to be close with. It's showing me some peoples' true colors. But, if these people were meant to be in my life, they would still be here. Endo has shown me who really cares, and who isn't willing to put up with the complications of being friends with someone who has a chronic illness. A huge positive outcome of this journey is how closely I now know my body. Endo has made me pay such close attention to my body that I feel so in tune with it. I know what's causing the physical feelings, and I'm working on learning how to control them to whatever extent I can.
What is EndoMarch2014? It's a much needed awareness event. It's a time for sufferers, doctors, nurses, family, friends, and supporters to all come together on one day to being awareness to this illness. This needs to stop being an unheard of condition, and there needs to stop being a taboo towards talking about a woman's reproductive system. This needs to stop being a condition that, on average, takes 10 years to diagnose. Can you imagine, suffering for 10 whole years without even knowing what's wrong with you? Being told that it's all in your head? Endo doesn't just cause physical pain from the internal bleeding and scar tissue formation. It can also cause anxiety, depression, and a wealth of other mental health issues, because one person can only be told their crazy so many times. It's like you're being punished for being ill, as if you didn't feel as though you were being punished already.
This event is taking place on March 13th, all across the globe. In the US, we will be meeting in Washington DC. We are gathering to bring awareness to this disease, to bring awareness to the need of better medical training, to bring awareness to the necessity of more education. We're gathering to make people aware.
We need to be heard, and I am so proud to be a part of this.
Monday, October 21, 2013
Do more.
Ok, so it's been a little while since I've written. Funny, how when the pain stops, I have less of a desire to write.
But it's becoming really obvious that just because the physical pain isn't there anymore doesn't mean that the emotional toll has lessened. I'm still so, so tired all the time. I just can't kick it. I can't lose weight, either. I can stick to an exercise regime, and eat better, and drink tons of water, but nothing ever happens. I weigh 30 pounds more than I did when I went in for surgery, and I just can't seem to lose it. I can't even explain how depressed that's making me. I hate what I see in the mirror to the point where I'm in tears.
I've always been an emotionally fragile person, but life is really giving me a run for my money lately. My boyfriend and I both quit smoking a week ago, and my anger is almost out of control these past couple of days. As if the frustration from quitting smoking wasn't enough, I'm also worried that the stress is going to make the pain come back.
Another kick while I'm down in the dumps lately is that one of my best friends is having her baby shower next month. While I'm happy for her, it makes me sad for me. I don't know whether or not I'll be able to have that, and I feel from the depths of my soul that being a mother is the only thing that I'd really be good at and enjoy in life. And it's the only thing that I may not be able to have.
Today's main frustration has been one that has been a frustration of mine for quite some time: I can't stand the fact that so many women living with endometriosis really don't know the facts about it, if they know anything about it at all. How is this something that effects as many as 10% of women, yet it's not something that's ever discussed in school. Not in elementary school during the "mother-daughter night," not in health class in middle school, and not even health class in high school. Why is this never taught? All it does is make the women suffering from it feel ashamed and alienated. They think they're alone, and women who don't use social media to reach out to other endosisters may never know how surrounded they really are.
Not only is it never even discussed in school, but how am I more educated about this disease than my gynecologist? Shouldn't she be the one teaching me? To make matters even worse, if I so much as insinuate that the doctor might not be correct about something, I'm going to be looked at as a difficult, bitchy patient. Why should I feel ostracized because I want to fight for the best care and treatment for myself? Am I supposed to just lay down and let this disease rule my life? No, I don't think so.
I wish I could do more in the sense of educating women about endometriosis. I'm trying to do my best with clearing up misconceptions and lending advice to women via questions on Twitter and Facebook, but it never feels like enough. There's also no way of being sure that the person you reached out to actually believes what you've said, or if their opinion is just going to be swayed by the next person that comes along and tells them something.
I just want to do more.
But it's becoming really obvious that just because the physical pain isn't there anymore doesn't mean that the emotional toll has lessened. I'm still so, so tired all the time. I just can't kick it. I can't lose weight, either. I can stick to an exercise regime, and eat better, and drink tons of water, but nothing ever happens. I weigh 30 pounds more than I did when I went in for surgery, and I just can't seem to lose it. I can't even explain how depressed that's making me. I hate what I see in the mirror to the point where I'm in tears.
I've always been an emotionally fragile person, but life is really giving me a run for my money lately. My boyfriend and I both quit smoking a week ago, and my anger is almost out of control these past couple of days. As if the frustration from quitting smoking wasn't enough, I'm also worried that the stress is going to make the pain come back.
Another kick while I'm down in the dumps lately is that one of my best friends is having her baby shower next month. While I'm happy for her, it makes me sad for me. I don't know whether or not I'll be able to have that, and I feel from the depths of my soul that being a mother is the only thing that I'd really be good at and enjoy in life. And it's the only thing that I may not be able to have.
Today's main frustration has been one that has been a frustration of mine for quite some time: I can't stand the fact that so many women living with endometriosis really don't know the facts about it, if they know anything about it at all. How is this something that effects as many as 10% of women, yet it's not something that's ever discussed in school. Not in elementary school during the "mother-daughter night," not in health class in middle school, and not even health class in high school. Why is this never taught? All it does is make the women suffering from it feel ashamed and alienated. They think they're alone, and women who don't use social media to reach out to other endosisters may never know how surrounded they really are.
Not only is it never even discussed in school, but how am I more educated about this disease than my gynecologist? Shouldn't she be the one teaching me? To make matters even worse, if I so much as insinuate that the doctor might not be correct about something, I'm going to be looked at as a difficult, bitchy patient. Why should I feel ostracized because I want to fight for the best care and treatment for myself? Am I supposed to just lay down and let this disease rule my life? No, I don't think so.
I wish I could do more in the sense of educating women about endometriosis. I'm trying to do my best with clearing up misconceptions and lending advice to women via questions on Twitter and Facebook, but it never feels like enough. There's also no way of being sure that the person you reached out to actually believes what you've said, or if their opinion is just going to be swayed by the next person that comes along and tells them something.
I just want to do more.
Sunday, May 26, 2013
It's been a while...
Mostly because I'm slipping back into depression. Spending every day feeling sorry for myself, trying to find the energy to even get out of bed.
Today is particularly bad. Got in a lovely fight with the boyfriend today. It seems that a lot of our fighting is because of things related to endo.
I hate what this disease has done to me.
Today is particularly bad. Got in a lovely fight with the boyfriend today. It seems that a lot of our fighting is because of things related to endo.
I hate what this disease has done to me.
Sunday, March 31, 2013
31 March 2013
So it finally broke me. 3 days ago, I had to leave work early. The pain had started on Thursday night, but I thought I could just sleep it off. Turns out, I was very wrong. I woke up, still in pain, on Friday morning. Got to work at 9, and ended up leaving at 11:15. I hadn't even worked a full 2 weeks yet before I had to take almost an entire sick day. It's so frustrating. It makes me feel completely lousy. It can't look good to my bosses, but at the same time, I can't help it.
It's an unfortunate truth that's been put right in my face. I can't control this. It's not up to me whether it's going to be a good day or a bad day. And honestly, acknowledging this feels like admitting defeat.
Considering I just came to that realization right now, I'm going to stop writing for the moment & think about that.
It's an unfortunate truth that's been put right in my face. I can't control this. It's not up to me whether it's going to be a good day or a bad day. And honestly, acknowledging this feels like admitting defeat.
Considering I just came to that realization right now, I'm going to stop writing for the moment & think about that.
Sunday, March 24, 2013
Taking a Break from Laundry...
Tomorrow is my post-op appointment with Dr. Isaacson. I don't really know what to expect from a post-op appointment, but I do expect to drop a lot of money on gas to get out there, which kind of sucks. But it's part of the price you pay to get a good surgeon I suppose.
I hope they're as happy with my recovery as I am at this point. I'm feeling pretty darn good, especially since I worked almost 40 hours this past week - first time since last September.
I'm really glad to be working again. I was definitely getting tired of sitting around all day, feeling useless. Now I work all week, and then try to find time for laundry so the boyfriend and I don't run out of clean clothes.
I'll try to not take too long to update on how the appointment goes tomorrow.
I hope they're as happy with my recovery as I am at this point. I'm feeling pretty darn good, especially since I worked almost 40 hours this past week - first time since last September.
I'm really glad to be working again. I was definitely getting tired of sitting around all day, feeling useless. Now I work all week, and then try to find time for laundry so the boyfriend and I don't run out of clean clothes.
I'll try to not take too long to update on how the appointment goes tomorrow.
Thursday, March 21, 2013
Things Looking Up?
Oh how I would love to share how things are going!
So far, my recovery has been good, overall. It was rocky at one point, but that's just because I was doing too much, too soon, and that's no bueno.
I started my new job on Monday; my first time working since I got laid off in the middle of last September! I was hired at a whole foods grocery store as a stocker, which I was pleased with. It felt great to be back to work again.
What's the awesome news? Today, on my 4th day at work, I essentially got an awesome promotion, which includes a pay raise!
Therefore, today was awesome. :)
So far, my recovery has been good, overall. It was rocky at one point, but that's just because I was doing too much, too soon, and that's no bueno.
I started my new job on Monday; my first time working since I got laid off in the middle of last September! I was hired at a whole foods grocery store as a stocker, which I was pleased with. It felt great to be back to work again.
What's the awesome news? Today, on my 4th day at work, I essentially got an awesome promotion, which includes a pay raise!
Therefore, today was awesome. :)
Sunday, March 3, 2013
Post-Op: Day 3
Today is the third day of my recovery. Things haven't been too terrible, but I'm definitely far from comfortable. I can't tell you how excited I was that I got to shower today! (You're not allowed to, the first 2 days after surgery. Yuck)
So now that I'm all clean, that does actually brighten up how I feel, a bit. But I'm getting really tired of sitting on my butt all day. Feeling helpless is not something I'm used to, and definitely not something that I enjoy. I keep trying to remind myself that I have to relax and take it easy, or else it's just going to slow my recovery down.
The incision in my belly button definitely hurts more than the other two. Above my belly button is swollen and very sensitive to pressure. The pain meds make me spacey, but they do alleviate the majority of my pain, so that's good.
I can't even begin to describe how incredibly lucky I am to have my boyfriend in my life. He's been taking care of me so well; from the big things like laundry, to the little silly things like helping me get out of bed because I was laying on my stomach and got stuck. Not only is he being incredibly helpful & supportive, he's doing a great job with reminding me to slow down and take it easy.
The only word I can come up with to describe how I've been feeling so far through my recovery is "overwhelmed." Even just going to the grocery store to get 3 things is just too much. And I suppose that I didn't really expect that. My emotions are a little bit out of control, but nothing I haven't experienced before.
I just can't wait until my recovery is complete so I can see if this is truly going to help me.
So now that I'm all clean, that does actually brighten up how I feel, a bit. But I'm getting really tired of sitting on my butt all day. Feeling helpless is not something I'm used to, and definitely not something that I enjoy. I keep trying to remind myself that I have to relax and take it easy, or else it's just going to slow my recovery down.
The incision in my belly button definitely hurts more than the other two. Above my belly button is swollen and very sensitive to pressure. The pain meds make me spacey, but they do alleviate the majority of my pain, so that's good.
I can't even begin to describe how incredibly lucky I am to have my boyfriend in my life. He's been taking care of me so well; from the big things like laundry, to the little silly things like helping me get out of bed because I was laying on my stomach and got stuck. Not only is he being incredibly helpful & supportive, he's doing a great job with reminding me to slow down and take it easy.
The only word I can come up with to describe how I've been feeling so far through my recovery is "overwhelmed." Even just going to the grocery store to get 3 things is just too much. And I suppose that I didn't really expect that. My emotions are a little bit out of control, but nothing I haven't experienced before.
I just can't wait until my recovery is complete so I can see if this is truly going to help me.
Friday, March 1, 2013
Post-Op: Day 1
So, my surgery was yesterday, making today Day 1 of my recovery.
I was diagnosed with Stage II endometriosis. The surgeon removed cells from the ligaments that hold the uterus up, and from the back of my uterus. There were no signs of adhesions. The outlook regarding my future fertility seems to be good.
All in all, the news about what they found is great.
The pain isn't too bad right now. I didn't end up having any of the shoulder pain that people get from the CO2. No nausea so far, either. Fleeting sharp pains come and go, but it's nothing unbearable. I think the worst part was the severe dry mouth from the anesthesia.
I'm trying to rest up as best as I can. It gets a little boring though. Thank goodness for Netflix!
I was diagnosed with Stage II endometriosis. The surgeon removed cells from the ligaments that hold the uterus up, and from the back of my uterus. There were no signs of adhesions. The outlook regarding my future fertility seems to be good.
All in all, the news about what they found is great.
The pain isn't too bad right now. I didn't end up having any of the shoulder pain that people get from the CO2. No nausea so far, either. Fleeting sharp pains come and go, but it's nothing unbearable. I think the worst part was the severe dry mouth from the anesthesia.
I'm trying to rest up as best as I can. It gets a little boring though. Thank goodness for Netflix!
Thursday, February 7, 2013
February 7th
Nothing new here, really. Just another day. The pain comes and goes; nothing too intense, luckily.
3 weeks until my surgery. I know I feel somewhat calm now, but I hope that feeling sticks around as the date gets closer.
I'm just going to take it day by day, and continue to be very thankful for my fantastic, supportive boyfriend.
3 weeks until my surgery. I know I feel somewhat calm now, but I hope that feeling sticks around as the date gets closer.
I'm just going to take it day by day, and continue to be very thankful for my fantastic, supportive boyfriend.
Thursday, January 31, 2013
Do you believe me now?
Let's see. Typical Thursday, for the most part.
Except for the fact that I stopped in at my old job that I got laid off from back in September. I had a lot of speculation about the pain I told them I was in. I doubt they believed me. So I did get a little satisfaction from the look on their faces when I told them I have a legitimate condition and that I'm having surgery. Guess I'm not making it up, now am I?
Being back at my old work reminded me of how much I liked the work I did. I just rubbed some coworkers the wrong way, as they did to me. It also reminds me of how useless I feel because I don't have a job. Sure, I do a lot of laundry, cleaning, dishes and whatnot, but it's not enough. I feel like my purpose has been taken from me.
Can't wait til this gets straightened out. 28 days and counting.
Except for the fact that I stopped in at my old job that I got laid off from back in September. I had a lot of speculation about the pain I told them I was in. I doubt they believed me. So I did get a little satisfaction from the look on their faces when I told them I have a legitimate condition and that I'm having surgery. Guess I'm not making it up, now am I?
Being back at my old work reminded me of how much I liked the work I did. I just rubbed some coworkers the wrong way, as they did to me. It also reminds me of how useless I feel because I don't have a job. Sure, I do a lot of laundry, cleaning, dishes and whatnot, but it's not enough. I feel like my purpose has been taken from me.
Can't wait til this gets straightened out. 28 days and counting.
Tuesday, January 29, 2013
Change of Plans
Sunday night, I lay awake in bed until 6am stressing out about the fact that my surgery was in only 5 days. Then, 4 and a half hours later, I was awoken by a phone call from the hospital telling me that Dr. Isaacson wasn't going to be in on Friday, and that my surgery had to be rescheduled. Great way to start my day!
Anyway, due to my father's work schedule, my new surgery date is February 28th. I'm not looking forward to another month of suffering, but I'm hoping that this new-found time will give me a chance to better mentally prepare myself for the surgery.
I'm considering giving the hospital a call to see what they can do in regards to pain management. I'm used to just dealing with it, but why? Why should I have to, when there's help for me?
We'll see.
Anyway, due to my father's work schedule, my new surgery date is February 28th. I'm not looking forward to another month of suffering, but I'm hoping that this new-found time will give me a chance to better mentally prepare myself for the surgery.
I'm considering giving the hospital a call to see what they can do in regards to pain management. I'm used to just dealing with it, but why? Why should I have to, when there's help for me?
We'll see.
Friday, January 25, 2013
One Week
My surgery is one week from today. I'm definitely starting to get nervous.
For starters, I've never had any type of surgery before. The anesthesia scares me, the breathing tube scares me, the fact that so many things could go wrong scares me. But the thing I'm most afraid of has nothing to do with what the doctors do to me. I'm terrified that I'm going to come out of the surgery and be told that my chances of ever having children are null. That would be absolutely devastating.
I'm trying to not focus on that. I'm trying to keep myself relaxed, because stress hikes up my pain level, and I've run out of my bath soak.
Trying to keep my head up and stay positive... 7 days to go.
For starters, I've never had any type of surgery before. The anesthesia scares me, the breathing tube scares me, the fact that so many things could go wrong scares me. But the thing I'm most afraid of has nothing to do with what the doctors do to me. I'm terrified that I'm going to come out of the surgery and be told that my chances of ever having children are null. That would be absolutely devastating.
I'm trying to not focus on that. I'm trying to keep myself relaxed, because stress hikes up my pain level, and I've run out of my bath soak.
Trying to keep my head up and stay positive... 7 days to go.
Wednesday, January 2, 2013
Finally Making Progress
Well, it's official. I called the Newton-Wellesley Hospital today, and made an appointment with Dr. Isaacson. I'm so glad to finally be heading in the right direction, especially because of how bad these past couple of weeks have been. It was definitely a rough Christmas and New Years, but I'm trying to stay positive.
In regards to my previous pre-op appointment, my doctor's office never called to confirm the appointment, and I apparently had the appointment time wrong, and missed it. The receptionist was very rude as always, and that's why I've decided to go straight to a specialist. I don't deserve to be treated that way, especially on top of what I'm already dealing with.
In regards to my previous pre-op appointment, my doctor's office never called to confirm the appointment, and I apparently had the appointment time wrong, and missed it. The receptionist was very rude as always, and that's why I've decided to go straight to a specialist. I don't deserve to be treated that way, especially on top of what I'm already dealing with.
Thursday, December 20, 2012
Christmas Blues
Christmastime doesn't look like it's going to be a good time for me this year. If things stay on schedule, Christmas should be quite painful.
And it seems that, although the world isn't ending, my ability to control my emotions has gone right out the window. All I want to do is sleep because I don't want to deal with my own feelings. Which is a terrible way to live.
And it seems that, although the world isn't ending, my ability to control my emotions has gone right out the window. All I want to do is sleep because I don't want to deal with my own feelings. Which is a terrible way to live.
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