Hello Everyone,
I have been waiting over a year to talk about my story. And right now I am absolutely terrified. I am terrified what people will say. Terrified if people will treat me differently but honestly, I need to do this. I need to finally get this off my chest about what has happened to me three years ago and how it has changed my entire life.
Some of you reading this right now probably have absolutely no idea what I am going to talk about and some of you kinda have an idea.
Today, I am going to tell my story/ journey of being diagnosed with Endometriosis and coping with it.
This is the beginning:
When I was 10, I got my period. But it was not normal from the beginning. I would have my period for weeks on end and sometimes for months and I was in terrible pain. It was horrible. I had absolutely no idea what was going on. I was in and out of doctors offices and they could not figure out why I was in so much pain.
So I was put on birth control at age 10 to deal with the bleeding and hopefully the pain.
I dealt with a lot transitioning from elementary school to middle school. It was very hard and confusing. But that is where this story started.
I have always had a very sensitive stomach. I have never really known why, I just always knew that something was just not right with my stomach.
Even though I was put onto birth control and that kind of helped with the bleeding, I still would sometimes get this pain in my stomach that was extremely painful. I couldn't move, I felt like I couldn't breathe, all I could do was wish the pain to stop.
This happened a couple of times throughout middle school and then into high school but I just coped with it and hoped that it would pass and it always did. The pain always passed.
On October 12th, 2012, I was in yoga class. Now yoga was probably one of my favorite classes because it was just a great environment and I was just so happy and relaxed whenever I went to yoga class. Well my yoga teacher told us to go into plank position. Now this was a super easy move for me so I did it. Than all of a sudden I got this wash of pain that I had never felt before in my life. It was this burning sharp pain that basically took the breathe out of me and I collapsed. I started bawling my eyes out and curled up into a ball. One of my really good friends and my teacher helped me up and tried to walk me outside of the classroom and called the nurse.
I was in so much agony. I thought I had experienced pain but this was indescribable. It felt like my insides were exploding.
And from that moment on, my life changed forever.
The nurse wheel chaired me to the nurses office because I could barely move. I basically just rested and got a heat pack and tried to breathe through the pain.
Now, I had not been feeling very well a couple of weeks prior to this. I kept telling my mom that something was wrong. Something was wrong with my stomach. I don't know what but something is just not right.
She always just said oh no its nothing, your fine, it will just pass.
The day I collapsed my mom took me after school to my pediatrician. He told me to go straight to the emergency room because they thought I had appendicitis.
I was in the hospital for a night. I was in so much agony and pain. The doctors knew that I didn't have appendicitis. They said they had absolutely no idea what was wrong.
So the doctor did two things. He told me to stay on an all liquid diet for two weeks. And than he told me that the pain was probably nonexistent and it was all in my head.
I was so upset and so angry because I knew that the pain was not in my head. I knew that something was extremely wrong.
I missed over a month of school. I could barely walk, I usually just slept most of the day. But when I wasn't sleeping, I was in pain.
My parents probably took me to over 7 doctors. I was in and out of the emergency room and over and over again I was told, " There is nothing wrong. You are fine. This is all in your head. " or one of my favorites was, " This is your anxiety and depression. Your fine."
After over a month of being bed ridden, I was able to go to school. For maybe 10-20, sometimes even 30 minutes. It was absolutely horrible.
I had so much anxiety about being at school because I was having to catch up on all the school work I had missed, I was having to sit in class in complete agony, and I was slowly losing my friends.
And when I was in pain, I tried to go to the nurses office and they treated me horribly. To this day, I still have anxiety about going to a nurses office because of them. They basically told me that there was nothing wrong that I just needed to suck it up. They would send me back to class even though I was bawling my eyes out, curled up in a ball.
My mom had a field day with my school because of how they treated me. They did not help me at all. They even told me that it is probably just anxiety and depression but I still need to be in school. Let me just say that anxiety and depression are still a condition and if a student is unable to go to school because of that, you cannot force them to come back. Even though that was not the problem, they forced me to come back to school and try to stay in school.
I suffered with this for over three months. Losing more and more friends. Becoming more and more bedridden. Getting more and more behind in school and lastly being told over and over again that there is nothing wrong and it was all in my head.
Than a miracle happened. My mom took me to a gastroenterologist and she said that she thinks I might have Endometriosis and that I should go to Children's Hospital Boston and see Dr. Laufer.
And that is exactly what we did and in less than five minutes he told me that I most likely have Endometriosis and that I need to get a laparoscopy.
Endometriosis is a disease in your uterus that causes chronic stomach pain as well as sometimes infertility. Basically when you get your period, you shed the endometrium. But when you have Endometriosis, the endometrium does not shed, it goes into different areas of the pelvic area, which causes pain. There is no cure.
On December 5th, 2012, I got a a laparoscopy at Children's Hospital Boston.
I was than diagnosed with Stage 1 Endometriosis.
Now the biggest thing is that no matter what stage you are in, it does not correlate with the pain. For example, you can have stage 4 Endometriosis and have very little pain or like me, I have stage 1 Endometriosis and I am get a lot of pain.
After my laparoscopy, I was out for about a week. I was still in pain and I was in a lot of discomfort.
But after my laparoscopy, I was feeling a lot less pain. Don't get me wrong, I was still in pain but it was not in the amount of severe pain as I was before.
From there, I was recommended to go to Children's Hospital Boston Pain Clinic to help cope with my pain in case any thing happened.
I was told a couple of things that had happened to me since October. Since I was in pain basically 24/7, my nerves were basically desensitized so I had to take medicine to get them back to normal. When someone would touch me, I would flinch in pain. And obviously that is not normal.
The second thing that I learned was I would need to go to physical therapy to help me strengthen my core as well as get back in shape.
And the last thing that I learned was that I had gained 60 pounds from being bed ridden.
After that I was slowly going to school but let me tell you it was hard. It was absolutely terrifying to go back to school. I was so isolated from the world and being in the center of a school with over 5,000 people was just way to much for my anxiety.
I cried a lot. I had lost all my friends. They basically just stopped talking to me and stopped being my friend. They just did not know what to do. So during lunch, I ran to the bathroom stall and just stayed there till lunch was over.
I had a lot of problems with the administration and the nurses and guidance counselors because I basically got no help from them. And they will deny it. They denied it to me and my mom multiple times but they did absolutely nothing.
I had to teach myself basically everything from October to April. I felt so stupid because I did not know anything. I was so overwhelmed because most of my teachers did not know what to do with me.
My guidance counselor and vice principle forced me to keep coming to school even though I was absolutely terrified and just overwhelmed .
This was around March and I was put into physical therapy. I was told that I was 80 % disabled. I could barely lift my legs, sitting up straight was so painful, and being touched was extremely painful.
It took over a month of physical therapy, once, sometimes twice a week to get me to get down to being 10% disabled. By April, I was able to walk 5 minutes straight without being out of breathe.
I was also going to acupuncture once, but mostly twice a week. If it wasn't for doing acupuncture and physical therapy at the same time, I definitely would not have recovered so quickly.
In April, I also joined Weight Watchers to help me lose all the weight that I had gained. I lost 25 pounds. Than in July, I had officially lost over 35 pounds.
I was able to go to school, a full day, without having a lot of anxiety and was able to accomplish a day. I was extremely lonely, I am not going to lie. I hated going to school every single day but I did because I wanted to be able to move onto my senior year. I had to drop out of some classes but in the end, with a lot of hard work and so much frustration, I was able to move to my senior year.
***
It has been three years since I was first diagnosed with Endometriosis. It has changed my life. I have learned to enjoy the simple things in life, like being able to walk and being able to go to school and learn.
A couple of months ago, I spoke at Children's Hospital Boston to a group of kids who had chronic pain. One boy asked me, " Do you ever wish you never had this disease?" And I said, " As much as I hate this disease and how much pain it has put me through, I am glad I have this disease because I would not be the person I am today." And I will stick to that.
***
But these past two months have been horrible. I have been in extreme pain almost 24/7 and I have been miserable and just been feeling mentally and physically exhausted. This pain comes and goes and right now, it is back on.
Don't get me wrong, I would love to be pain free. I really need to be pain free right now because it is slowly ruling my life. But that's the thing. I cannot have pain rule my life. I rule my life and I will let nothing stop me from trying to live my life to the fullest.
The reason I wanted to write this is because this is my life. This will be part of my life. There is no cure. I need to accept that and try to move forward. I am not going to lie, I have lost some friends because of it. And I have been missing classes. But I'm trying to move past it. I am stronger than this disease.
But I did not just write this just for myself. I wrote this for every single person who has suffered or is still suffereing with this disease or have a similar situation as me. It is not normal for you to feel so much pain. You should not be told it is all in your head. You know what is wrong with your body and you need to advocate for it. No one knows anything better than you do. Your health is more important than anything else.
I hope you all enjoyed this extremely long post. I am trying hard to let go of all that pent up anger I have at my old school and administration. But if I can share my story and help at least one person, than I am happy.
I hope you all have a wonderful day/night. If you have any questions or you want to share your story please please do. I would love to talk about it. If any of you just need to vent, please do. It is so hard living with this disease and more people need to talk about it.
My email is sophia.reyes777@gmail.com if you want to contact me.
PS: Without the support and encouragement of my family, I would not be where I am today. So thank you. I love you.
There is hope. I promise you. Stay Strong. Breathe. Stay Gold.
Carpe Diem,
Sophia
I have been waiting over a year to talk about my story. And right now I am absolutely terrified. I am terrified what people will say. Terrified if people will treat me differently but honestly, I need to do this. I need to finally get this off my chest about what has happened to me three years ago and how it has changed my entire life.
Some of you reading this right now probably have absolutely no idea what I am going to talk about and some of you kinda have an idea.
Today, I am going to tell my story/ journey of being diagnosed with Endometriosis and coping with it.
This is the beginning:
When I was 10, I got my period. But it was not normal from the beginning. I would have my period for weeks on end and sometimes for months and I was in terrible pain. It was horrible. I had absolutely no idea what was going on. I was in and out of doctors offices and they could not figure out why I was in so much pain.
So I was put on birth control at age 10 to deal with the bleeding and hopefully the pain.
I dealt with a lot transitioning from elementary school to middle school. It was very hard and confusing. But that is where this story started.
I have always had a very sensitive stomach. I have never really known why, I just always knew that something was just not right with my stomach.
Even though I was put onto birth control and that kind of helped with the bleeding, I still would sometimes get this pain in my stomach that was extremely painful. I couldn't move, I felt like I couldn't breathe, all I could do was wish the pain to stop.
This happened a couple of times throughout middle school and then into high school but I just coped with it and hoped that it would pass and it always did. The pain always passed.
On October 12th, 2012, I was in yoga class. Now yoga was probably one of my favorite classes because it was just a great environment and I was just so happy and relaxed whenever I went to yoga class. Well my yoga teacher told us to go into plank position. Now this was a super easy move for me so I did it. Than all of a sudden I got this wash of pain that I had never felt before in my life. It was this burning sharp pain that basically took the breathe out of me and I collapsed. I started bawling my eyes out and curled up into a ball. One of my really good friends and my teacher helped me up and tried to walk me outside of the classroom and called the nurse.
I was in so much agony. I thought I had experienced pain but this was indescribable. It felt like my insides were exploding.
And from that moment on, my life changed forever.
The nurse wheel chaired me to the nurses office because I could barely move. I basically just rested and got a heat pack and tried to breathe through the pain.
Now, I had not been feeling very well a couple of weeks prior to this. I kept telling my mom that something was wrong. Something was wrong with my stomach. I don't know what but something is just not right.
She always just said oh no its nothing, your fine, it will just pass.
The day I collapsed my mom took me after school to my pediatrician. He told me to go straight to the emergency room because they thought I had appendicitis.
I was in the hospital for a night. I was in so much agony and pain. The doctors knew that I didn't have appendicitis. They said they had absolutely no idea what was wrong.
So the doctor did two things. He told me to stay on an all liquid diet for two weeks. And than he told me that the pain was probably nonexistent and it was all in my head.
I was so upset and so angry because I knew that the pain was not in my head. I knew that something was extremely wrong.
I missed over a month of school. I could barely walk, I usually just slept most of the day. But when I wasn't sleeping, I was in pain.
My parents probably took me to over 7 doctors. I was in and out of the emergency room and over and over again I was told, " There is nothing wrong. You are fine. This is all in your head. " or one of my favorites was, " This is your anxiety and depression. Your fine."
After over a month of being bed ridden, I was able to go to school. For maybe 10-20, sometimes even 30 minutes. It was absolutely horrible.
I had so much anxiety about being at school because I was having to catch up on all the school work I had missed, I was having to sit in class in complete agony, and I was slowly losing my friends.
And when I was in pain, I tried to go to the nurses office and they treated me horribly. To this day, I still have anxiety about going to a nurses office because of them. They basically told me that there was nothing wrong that I just needed to suck it up. They would send me back to class even though I was bawling my eyes out, curled up in a ball.
My mom had a field day with my school because of how they treated me. They did not help me at all. They even told me that it is probably just anxiety and depression but I still need to be in school. Let me just say that anxiety and depression are still a condition and if a student is unable to go to school because of that, you cannot force them to come back. Even though that was not the problem, they forced me to come back to school and try to stay in school.
I suffered with this for over three months. Losing more and more friends. Becoming more and more bedridden. Getting more and more behind in school and lastly being told over and over again that there is nothing wrong and it was all in my head.
This is the only picture that was taken of me when I was sick.
Than a miracle happened. My mom took me to a gastroenterologist and she said that she thinks I might have Endometriosis and that I should go to Children's Hospital Boston and see Dr. Laufer.
And that is exactly what we did and in less than five minutes he told me that I most likely have Endometriosis and that I need to get a laparoscopy.
Endometriosis is a disease in your uterus that causes chronic stomach pain as well as sometimes infertility. Basically when you get your period, you shed the endometrium. But when you have Endometriosis, the endometrium does not shed, it goes into different areas of the pelvic area, which causes pain. There is no cure.
On December 5th, 2012, I got a a laparoscopy at Children's Hospital Boston.
I was than diagnosed with Stage 1 Endometriosis.
Now the biggest thing is that no matter what stage you are in, it does not correlate with the pain. For example, you can have stage 4 Endometriosis and have very little pain or like me, I have stage 1 Endometriosis and I am get a lot of pain.
After my laparoscopy, I was out for about a week. I was still in pain and I was in a lot of discomfort.
But after my laparoscopy, I was feeling a lot less pain. Don't get me wrong, I was still in pain but it was not in the amount of severe pain as I was before.
From there, I was recommended to go to Children's Hospital Boston Pain Clinic to help cope with my pain in case any thing happened.
I was told a couple of things that had happened to me since October. Since I was in pain basically 24/7, my nerves were basically desensitized so I had to take medicine to get them back to normal. When someone would touch me, I would flinch in pain. And obviously that is not normal.
The second thing that I learned was I would need to go to physical therapy to help me strengthen my core as well as get back in shape.
And the last thing that I learned was that I had gained 60 pounds from being bed ridden.
After that I was slowly going to school but let me tell you it was hard. It was absolutely terrifying to go back to school. I was so isolated from the world and being in the center of a school with over 5,000 people was just way to much for my anxiety.
I cried a lot. I had lost all my friends. They basically just stopped talking to me and stopped being my friend. They just did not know what to do. So during lunch, I ran to the bathroom stall and just stayed there till lunch was over.
I had a lot of problems with the administration and the nurses and guidance counselors because I basically got no help from them. And they will deny it. They denied it to me and my mom multiple times but they did absolutely nothing.
I had to teach myself basically everything from October to April. I felt so stupid because I did not know anything. I was so overwhelmed because most of my teachers did not know what to do with me.
My guidance counselor and vice principle forced me to keep coming to school even though I was absolutely terrified and just overwhelmed .
This was around March and I was put into physical therapy. I was told that I was 80 % disabled. I could barely lift my legs, sitting up straight was so painful, and being touched was extremely painful.
It took over a month of physical therapy, once, sometimes twice a week to get me to get down to being 10% disabled. By April, I was able to walk 5 minutes straight without being out of breathe.
I was also going to acupuncture once, but mostly twice a week. If it wasn't for doing acupuncture and physical therapy at the same time, I definitely would not have recovered so quickly.
In April, I also joined Weight Watchers to help me lose all the weight that I had gained. I lost 25 pounds. Than in July, I had officially lost over 35 pounds.
I was able to go to school, a full day, without having a lot of anxiety and was able to accomplish a day. I was extremely lonely, I am not going to lie. I hated going to school every single day but I did because I wanted to be able to move onto my senior year. I had to drop out of some classes but in the end, with a lot of hard work and so much frustration, I was able to move to my senior year.
***
It has been three years since I was first diagnosed with Endometriosis. It has changed my life. I have learned to enjoy the simple things in life, like being able to walk and being able to go to school and learn.
A couple of months ago, I spoke at Children's Hospital Boston to a group of kids who had chronic pain. One boy asked me, " Do you ever wish you never had this disease?" And I said, " As much as I hate this disease and how much pain it has put me through, I am glad I have this disease because I would not be the person I am today." And I will stick to that.
***
But these past two months have been horrible. I have been in extreme pain almost 24/7 and I have been miserable and just been feeling mentally and physically exhausted. This pain comes and goes and right now, it is back on.
Don't get me wrong, I would love to be pain free. I really need to be pain free right now because it is slowly ruling my life. But that's the thing. I cannot have pain rule my life. I rule my life and I will let nothing stop me from trying to live my life to the fullest.
The reason I wanted to write this is because this is my life. This will be part of my life. There is no cure. I need to accept that and try to move forward. I am not going to lie, I have lost some friends because of it. And I have been missing classes. But I'm trying to move past it. I am stronger than this disease.
But I did not just write this just for myself. I wrote this for every single person who has suffered or is still suffereing with this disease or have a similar situation as me. It is not normal for you to feel so much pain. You should not be told it is all in your head. You know what is wrong with your body and you need to advocate for it. No one knows anything better than you do. Your health is more important than anything else.
I hope you all enjoyed this extremely long post. I am trying hard to let go of all that pent up anger I have at my old school and administration. But if I can share my story and help at least one person, than I am happy.
I hope you all have a wonderful day/night. If you have any questions or you want to share your story please please do. I would love to talk about it. If any of you just need to vent, please do. It is so hard living with this disease and more people need to talk about it.
My email is sophia.reyes777@gmail.com if you want to contact me.
PS: Without the support and encouragement of my family, I would not be where I am today. So thank you. I love you.
There is hope. I promise you. Stay Strong. Breathe. Stay Gold.
Carpe Diem,
Sophia
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