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.
Monday, March 30, 2015
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.
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