GET THE SURGERY!

Merry Christmas everyone! I hope you are having a happy and healthy holiday season.  In my last post I said I would give more information about the Endometriosis Laparoscopic surgery.  Getting this surgery is the only way to officially diagnose Endometriosis. I got the surgery almost a year ago now at Boston Children's Hospital.  Before the surgery, I was in so much pain everyday, now after the surgery, I only have a few days a month where I am in a lot of pain.  It is an easy surgery.  It is same day surgery, so you can go home a couple hours after it is done.  The doctors make two small 5 millimeter incisions.  One inside the bellybutton and the other just below the abdomen. The incisions leave a small scar, but nothing extremely noticeable.  The recovery only takes about three to four days, maybe longer depending on the person.  The second day I was in a lot of pain from the doctors probing the inside of my stomach.  Also when they do this surgery, the doctors pump your stomach with gas in order to see inside more clearly.  For females, in order for the gas to release, it has to travel up through your body and is released through the shoulders.  I would not say this part is painful, but it is definitely uncomfortable. Overall, the surgery helped my pain so much!  I one hundred percent would recommend getting it. The doctors were able to find a lot of Endo, then they were able to get rid of it.  Just remember, this surgery is not a cure, but it is the closest to a cure so far.  If you have anymore questions, feel free to leave them in the comments.  I hope you all have a very Merry Christmas and remember, Endo is NOT the end!!

Frequently Asked Questions About Endo

Q: Why have I never heard about Endometriosis?

A: Endometriosis is a disease that effects 10% of women, but no one seems to talk about it. The truth is, there is not a lot of information about this disease but researchers are working, as you are reading this, to find an answer.

Q: How much does it hurt?

A: There is no way to describe the pain we are in everyday.  There is no way for anyone to understand what we go through and that is why people need to start talking about it more.

Q: Is there a cure for Endometriosis?
A: At the present time, there is no cure for Endo but there are long term treatments such as the birth control pill.  This pill does not take away the pain, but it regulates it so it is not as bad as it could be.

Q: Can't you just get out of your bed?

A: The truth is, some days I cannot and that is just the reality of having Endo. Some days are worse than others and there is nothing anyone can do about it.

Q: Will it get better?

A: Although I want to say yes to this question, I can't.  It probably will not get better and that is just something I have to live with.

Q: Why does it look like you are fine?

A: Endometriosis is an "invisible" disease meaning women who have it tend not to show how they are really feeling on the inside.

Q: How can I learn more about Endometriosis?

A: I have useful links down below that you can click on to read.

Q: How do you handle the pain?
A: It is really hard most of the time, but I try my best to do everything I can.  The thing that helps me the most is lying down and using my heating pad. If you have Endo, a heating pad is an essential item.

Q: What are the symptoms of Endometriosis?
A: The main symptom of Endo is pelvic pain, typically during a woman's menstrual cycle. There are other symptoms as well such as headaches, fatigue, body aches, etc.

Q: Would you recommend the Laparoscopic surgery? 

A: I would 100% recommend the surgery. Although it does not cure Endo, it helps immensely. It is an easy same day surgery and a short recovery. So if you have Endo and have not gotten this surgery, I would definitely research it.  I will be making a post about it soon so  I can share more information about it.

Ladies, Don't Let Endo Ruin Your Holiday Season

So, the holidays are coming up as you all know, this can be some of the hardest times to have Endo. Everyone is suppose to be happy and joyous but how are you supposed to do that if you have pain all the time? At least for me, my pain always comes at the absolute worst times and I just have to push through. During the holidays is one of  those times. I remember last year during the holidays, before I was diagnosed, I had a miserable time. My family celebrates Christmas and it is my favorite time of the year! Listening to Christmas music, driving around looking at lights, going ice skating, going shopping for gifts, ecetera are things I love to do. This season only comes one time a year and when you're in pain, you just feel like it's ruined. But don't worry ladies, even if you're in pain, you can still have fun during the holiday season. Here are some tips: don't go overboard with the sweets. The sugar can cause inflammation which might cause you're Endo to start hurting. Wear comfortable clothing so there's nothing pressing up against your stomach causing it to hurt. Finally, distract yourself by having fun with your family and friends. Don't ruin your holiday season by thinking you cannot leave the house. I hope you all have a happy and healthy holiday season! Thank you for reading and remember, Endo is NOT the end!

Relationships With Endo

Relationships with Endo are so hard. I have ruined several relationships because of my Endo. The worst part is, it isn't even the person, it is the chronic disease that makes you want to stay in bed all day.  It does not matter if it is a friendship or a romantic relationship, they can both be ruined because of Endo.  Like I said in my last post, women with Endo do not want to burden other people with their pain.  I know personally, whenever I see my friends and family, I always have a smile on my face even though I might not feel like smiling on the inside. Both friendships and romantic relationships take work, and with Endo, a lot of the time we do not have enough energy to even leave the house. What I have learned over the past year and a half is that, with Endo you realize what relationships are most important to you.  Since we have a lot less energy then the normal person, we are not going to waste our time on relationships that are not going anywhere.  I know I am only a teenager and haven't experienced a lot of relationships, but I have experienced enough to know that if you want to keep a relationship alive with Endo that it takes extra week.  If that person or people mean that much to you, then you will make it a priority to get out of bed and see them that day. It is also important to tell the people you are close to about your Endo so they know you are not just blowing them off. I know more than anyone that they most likely will not understand, but at least they know.  I very strongly encourage you to talk to the people close to you and not make the same mistakes I did.  Thank you for reading, stayed tuned for my next post, and remember, Endo is NOT the end!

Girl, Take Off That Mask!

How do you tell if someone has Endo by just looking at them? The answer to that question is you most likely can’t.  Women who suffer from Endo “put on a mask” so we don’t burden the people around us with our pain.  Also, not a lot of people are informed about this awful disease so how are they supposed to know how we are feeling.  I want to be able to take off that mask whenever it is possible.  I have friends and family that care about me and care how I feel.  Bottling up your emotions just makes everything worse.  Take it from me who has done it for so long.  I can go to school one day in so much pain, but my friends will never know because I have that mask on showing that I am fine.  If you show your emotions, the people that are close to you will want to help and do as much as they can to make you feel better.  I challenge all the Endo sufferers reading this to find that one person you know you can always count on to talk to.  It is so important to take off that mask.  You aren’t hurting anyone but yourself with that mask still on. So please, I encourage everyone suffering from Endo to take of that mask, including myself, and show people our emotions.  Thank you for reading and remember, Endo is not the end!

"Endo What?" Movie

One day, a few weeks ago, I was in so much pain and was feeling very trapped.  I could not even move and I felt like my parents did not understand me at all.  It makes me so upset when I am the only person around me who understands my pain.  I just did not know what to do anymore.  Finally, I asked around and someone recommended that I watch this movie called “Endo What?” with my parents.  I think it really helped them to understand more about what I go through every day.  It is so hard for people without Endo to know how we feel since we tend to mask our pain.  It is even hard for other people with Endo to understand since we all have different pain.  This movie really helped me to see how other people feel and it made me feel not so alone.  Many women share their stories and it is so easy to relate to.  I one hundred percent recommend this movie to anyone who is feeling alone. This movie in linked at the bottom of this page and I really recommend checking it out. Thank you for reading! 

Exercise with Endo

Exercise with Endometriosis has always been a struggle for me.  This April, two months after my surgery, I started going to the gym with my mother.  I really like it because I do not like running so it is something else for me to do to be active.  I do a cardio machine and the do weights.  Being active is always something that makes my endo worse.  I am always looking for new ways to exercise that do not put me in so much pain.  Endo can cause heart issues in the future, so it is important to stay active.  When I am having a bad week, it is hard for me to walk let alone do a whole workout.  If you have any tips for me please leave them in the comments.  You can subscribe using your email below to be notified whenever I publish a new blog post.  Thank you for reading!

My Endometriosis Story: End?

My surgery was scheduled for February 24, 2016.  I will never forget that date.  It was a very easy surgery but I do not remember a lot of it.  The doctors were very nice and my family was so supportive.  After my surgery, my pain decreased a lot.  When I got home from my surgery my friends and family were so supportive.  I received some great gifts that really helped me get through the next couple of days.  Every once in a while I will have days that I am in a lot of pain, but I need to learn how to control it.  In the meantime, I take a birth control medication to help with the pain.  Endo is known as an “invisible pain”.  Most women, including myself, with Endo put on a mask and act like we are fine.  We do not want to ruin other people’s day because we are in pain.  We most definitely do not want to ruin relationships and friendships either.  I am so thankful to all my amazing friends and family who have helped me through this very hard time.  I would like to use this platform to inform people and advocate for this disease that affects ten percent of women.  The only way to create a cure for this disease is to inform people about it.  Please help me spread the word about this debilitating condition.  Feel free to send me your stories because I would love to read them! Thank you for reading.

My Endometriosis Story: Middle

In my previous posts, I talked about how my gynecologist did not really do anything to help my situation.  Finally, the gynecologist thought there was something wrong with my pelvic floor muscles.  I went to physical therapy for four or five months but I knew there was still something else wrong.  We came to find out that I did have tight pelvic floor muscles but that was BECAUSE of my Endo.  I felt trapped inside my own body.  Like no one understood what I was feeling and I felt very alone.  I still feel like this sometimes but I am lucky to have great friends who always allow me to talk about it with them.  In research, my mother found that there is a clinic at Boston Children's Hospital specifically for teens with endometriosis.  This was amazing news for both my family and I.  Since we had been to so many different doctors that could not tell what was wrong with me, I was definitely ready to go to Boston.  Within minutes of being in my appointment, my doctor could tell me that I most definitely had Endo.  Of course, the only way to find out for sure was to do the surgery.  Stay tuned for the last part of my Endo story.  Thank you for reading!

My Endometriosis Story: Hospital Visits

Over the summer, I go to a two week overnight theatre camp.  This was in August and I started getting the pain in June.  This camp is my favorite place in the whole world and it killed me that I had to sit out of a lot of it.  Every afternoon I would have to go lay down in the infirmary because my pain was just too bad.  So finally, the nurse told me that I needed to go to the emergency room.  She said there was nothing she could do for me and she did not want to see me in this much pain all the time.  I did not want to leave camp at all, but I knew it was the best thing for me to do.  Early the next morning, my father came to pick me up and drove me to the emergency room at the hospital in my city.  I was there all day while they ran tests and took so many blood samples.  They tested my blood for almost everything that it could possibly be and then some.  All the tests came back negative which was good, but we still did not have any answers.  I had to miss one day and one night of my camp which made me so upset because we did not find anything out, and the next morning I went back camp still in the same amount of pain I had when I left.  I spent the rest of camp really trying to do as much as I could but I still had to take a lot of breaks with the nurse and get carted around in a golf cart everywhere I went.  I am glad that the summer after my surgery I was able to enjoy camp a lot more and only had to rest in the infirmary ONCE while I was there.  Stay tuned for the next parts of my story. Thank you for reading!

My Endometriosis Story: Beginning

For those who do not know, the dictionary definition of Endometriosis is a condition resulting from the appearance of endometrial issue outside the uterus and causing pelvic pain.  I am a fifteen year old high school girl and I suffer from Endometriosis.  On June 10, 2015, my life changed forever. I was sitting in math class when I started getting excruciating pain in my lower abdomen.  I thought it was just cramps from being on my period that week, but I was very wrong.  I asked my teacher to go to the bathroom, and when I stood up, I could hardly walk down the hall.  The pain has never stopped since that day.  I got home that day and told my mother but she also thought it was just period cramps.  It was about a month before we started visiting different doctors.  First we went to our family doctor and she sent me over to get an ultrasound at the hospital.  At first everyone thought it was my appendix but the pain just did not go away.  I ended up having three different ultrasounds and a CAT Scan, but no doctors could see anything wrong with me.  We went to a surgeon, but he also said he did not see anything wrong with me.  Our family doctor finally recommended we go to a gynecologist, so we did.  Still no one knew what was wrong with me.  The gynecologist was not very helpful.  After several visits she basically told me I was lying about how much pain I was in and being a dramatic teenage girl.  This made me so mad.  My mother had brought up the possibility of Endometriosis to her, but she totally dismissed it.  My aunt and grandmother had both suffered with Endometriosis so it was not unlikely that I might have it.  Normally, Endometriosis is found in adult women, not teenagers, that is why it is so hard for us to be diagnosed.  Stay tuned for the next parts of my story.  Thank you for reading!