Ten Years Later

This week, I celebrated the ten year anniversary of my endometriosis surgery and subsequent diagnosis. The day I was officially labeled as “not crazy” and entered into a completely new chapter of my life. It’s hard to believe it’s been ten years. I genuinely have no idea where the time has gone.

For so long before that surgery, I was fighting to be believed. Fighting doctors. Fighting my own body. Fighting the quiet voice in the back of my head that wondered if maybe everyone else was right and I was exaggerating. That operating room gave me more than a diagnosis. It gave me validation. It gave me proof. It gave me permission to trust myself again.

Endometriosis has taken a lot from me. It has taken days, weeks, entire seasons of my life. It has taken energy I will never get back. It has taken a version of girlhood that felt carefree and simple. But it has also made me into the person I am today.

Someone who knows how to advocate for herself and for others. Someone who has quite literally made a career out of it. Someone who does not care what others think because she has already survived being doubted at her most vulnerable. Someone who is confident. Someone who knows what really matters in life because she learned early on how fast your life can change. Someone who surrounds herself with good people because she understands how precious time is. Someone with unwavering determination and ambition because she has had to fight for everything. Someone who is kind because she knows better than anyone that people can be fighting battles silently. Someone who others can look to when they have just been diagnosed and feel like their world is ending. The list really does go on and on.

I am so proud of the person I am today. And I hate to say it, but I truly do not think I would be this version of myself without all the adversity I have faced. Ten years ago, I remember thinking that if I was going to have to live with this, it had to mean something. I wanted to turn my pain into purpose. I didn't know how yet. I didn't know what that would look like. But I knew I could not let it be for nothing. I am proud to say I have done just that.

I worked with my doctors and my boss to write and file legislation that eliminates the primary care referral requirement for specialty gynecological care so others do not have to fight as hard as I did to be heard. I took the worst moments of my life and turned them into policy. Into change. Into something tangible that could make the path a little smoother for the next person sitting in an exam room begging someone to listen.

Every single day in my job, I use the skills that were sharpened by my pain. I advocate for people in their most vulnerable and hardest moments. People navigating housing crises. People dealing with healthcare systems that feel impossible. People who are exhausted and scared and just want someone to pick up the phone and fight for them. I know how that feels. I know what it is like to feel small in a system that is supposed to help you. And I refuse to let people feel alone if I can help it. And I am just getting started.

In the last ten years, I have graduated high school. I graduated college. I am now just months away from graduating with my master’s degree. Somehow, I have thrived academically every step of the way. I think part of it has been distraction. School gave me structure. It gave me something to focus on when my body felt out of control. It reminded me that my brain still worked even when my body felt like it was failing me.

I completed internships. I nannied. I worked in offices on my college campus. I led many clubs. I said yes to opportunities even when I was tired. All of it led me to the full time job I have today. A job that is challenging and exhausting and demanding. A job that I love. A job that constantly reminds me that everyone is carrying something.

Sometimes I look back at fourteen year old me, sitting in therapy for depression because it felt like no one believed her pain, and I wish I could hug her. She could not imagine a future. She could not imagine feeling strong. She definitely could not imagine a future this bright. She thought her life was over before it had even begun. If only she could see me now.

I still struggle every single day. Every single day is a battle to get out of bed. Chronic illness does not disappear just because you have grown around it. The pain still shows up. The fatigue still lingers. The frustration still creeps in. But I have tools now. I have coping skills. I have perspective. I know what my body is capable of surviving. I know that I can do hard things.

The last ten years have not been easy. They have been messy and painful and complicated. But they have also been filled with growth, purpose, and resilience I never knew I had.

I cannot wait to see what the next ten years will bring. I hope for less pain and fewer medical battles. I hope for more advocacy, more impact, more moments where someone feels heard because I spoke up. Most of all, I hope I continue to honor that girl who just wanted to be believed.

Ten years ago, I was fighting for a diagnosis. Today, I am living proof that you can fight, survive, and still build a life you are proud of.

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It's My Endoversary- Tips for Endo Surgery!

Is an Endoversary a thing or did I just totally make that up? I don't know but anyway, today is my five-year anniversary of being diagnosed with endometriosis, wow! It seems so long ago but also not at the same time, you know what I mean?? Instead of doing some sappy post (which you can see over on my Instagram), I wanted to share my tips for excision surgery because as we know, five years ago today, that's where I was. I get messages all the time asking me what to bring, what to expect, how long the recovery is, etc., and while surgery is different for every person, I want to share my experience to hopefully ease some of your worries on the big day!

Bring a pillow and blanket for the car: After all the surgeries I've had, I've felt extremely nauseous after, so being able to lay down and be comfortable in the car is the best thing you can do to help that.

Prepare yourself that your shoulders will probably hurt from the gas trying to escape after surgery: Your doctor will have to pump your stomach with gas to create more room for them to see, but this gas has to escape somehow. This is something I was told beforehand, but I didn't realize how painful it would actually be. 

Rest as much as possible: You just got surgery and your body needs to rest, it's as simple as that!

But get up and walk around your house when you feel up for it: Yes it's important to rest, but it's also important to get up and walk around to get things moving. Make sure you don't push yourself though! 

Don't push yourself or you'll be recovering for a lot longer: Don't think you'll be able to return to regularly scheduled programming right away, your body needs time to heal. 

Have a comfortable recovery station at home: When I got home from my surgery, I set up a station right on my couch with lots of comfy blankets, my heating pad, my water bottle, the TV remote close by, anything you need to help you feel as comfortable as possible. 

Do research on laparoscopic surgery before the big day: There are lots of blog posts out there explaining people's experiences, including mine that I attached below!

Have foods at home that are easy on the stomach: There's a possibility the anesthesia will make you feel nauseous, I know it definitely did for me, so make sure you have foods like soup and ice cream that are easy on your stomach. 

Avoid lifting heavy objects or putting other strain on your abdomen:  You will have open incisions on your abdomen, so you don't want to do anything that's going to rip those open and prolong your recovery process. 

Feel relieved that your surgery worked (hopefully) and you'll be in less pain!

My Surgery Experience From a Previous Blog Post (don't make fun of my terrible writing, I was 14 haha!):

Getting this surgery is the only way to officially diagnose Endometriosis. I got the surgery almost a year ago now (five years now!) at Boston Children's Hospital.  Before the surgery, I was in so much pain every day, 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, so you can go home a couple hours after it is done.  The doctors make two small 5 millimeter incisions; one inside the belly button 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, and 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 any more questions, feel free to leave them in the comments. 

*Disclaimer: This is just my experience, everyone has different experiences but I was asked to share my own. 

How I Helped My Bladder Problems!

 If you've been following my blog or Instagram for the last several months, then you know that I've been struggling with severe bladder frequency and bladder pain. This started getting more severe in September after being home from college since March due to the pandemic. I eventually made an appointment at Boston Children's Urology and they've been helping me the last couple of months, however, what has helped me the most is going back to pelvic floor physical therapy when I came home for winter break. I know a lot of people with endometriosis also suffer with bladder problems because it creates a lot of inflammation in that area, so I want to lay out the steps I took to help myself feel so much better in just two months. 

Wand:

A wand is a kind of dilator that focuses on stretching the deep pelvic floor muscles. Those muscles are basically responsible for holding all your organs in that region of your body, so when they are out of wack, that can create many problems. The wand is curved so it can reach those deeper layers and I highly recommend asking your physical therapist about it because it has helped me so much with getting those muscles to relax and getting the pressure off my bladder to decrease frequency.

Diet:

I've talked about this a lot on my Instagram, but I started eating an anti-inflammatory diet this summer and have gotten more serious about it lately. The things to look out for the most to help your bladder in this diet (at least for me) are bubbly drinks because of the carbonation and sugar, artificial sugar like in candy, and dairy. I still allow myself to have dairy and artificial sugar every now and then because it's hard not to, but not eating it most of the time has really helped with my bladder pain. 

Cupping:

Starting about a month ago, I started doing cupping in physical therapy. I'm going to do a whole blog post explaining what cupping is and my experience with it, but it's basically little cups that suction onto your skin and they relax and stretch the muscles as well as release all the toxins built up in your skin. This has not only helped my pelvic pain immensely but also my tailbone that has been injured since July. I could not recommend this enough if you have the opportunity to try it out. 

Mind Tricks:

I call these mind tricks for lack of a better word, but they have really made all the difference when it comes to my bladder frequency. The first trick my physical therapist taught me is to ignore the first pee signal your bladder sends you to see if it goes away. When you have bladder inflammation, your bladder is swollen so it thinks it's full when it's actually not. This turns into a nasty cycle because when you start emptying your bladder when it's not actually full, then it starts to shrink which is what was happening to me. By ignoring that first signal, you might get a longer stretch between empties which will help your bladder stretch back out. The second trick I use is when I get the signal to go to the bathroom, I tell myself that I don't need to go, especially if I just went. I normally do this at bedtime when I have just gone to the bathroom and it helps. Sometimes all it takes is making yourself think otherwise to help :)

Cranberry Supplement:

This is a very simple one, but cranberry is known to be very good with urinary tract health. Cranberry juice is not good in this situation because of the sugar, so a cranberry supplement is a great choice! It's a small thing that can make a big difference for your overall health. 

If you are struggling with bladder issues like me, I strongly recommend all these strategies to combat it. Going back to pelvic floor physical therapy is the best decision I've ever made for myself because it has helped me so much with all my problems, big or small. I understand not everyone is lucky enough to be able to go to physical therapy, but there are a lot of things you can look up online to help yourself. And as always, feel free to DM me on Instagram @endoisnottheendblog if you are experiencing any of these problems and want someone to talk to who understands!

Update On My Bladder Problems

 If you follow my Instagram, you may know that I have been struggling with bladder pain and frequency for the last couple of months. It is not really ideal to be going through this while away at college and in a pandemic, however, my body clearly has a mind of its own. I have been peeing 15-20 times a day, which is about once an hour or more, and I sporadically get very intense bladder pain that feels like a bunch of lasers are going through my bladder at the same time. Not to mention also getting up to pee 3-5 times a night, so as you can imagine, I'm exhausted. I finally had enough of this and decided to call the urology department at Boston Children's since that's where I get my endometriosis care and I have nothing but good things to say about them. About two weeks ago, I went to Boston Children's to get some tests done. I got a urine flow test where you pee into a "special toilet" (their words) and they see if there are any irregularities. I also had an ultrasound done to see if there was anything out of the ordinary. The ultrasound came back clear, but the urine flow test showed that my muscles were tensing up when I pee which means that my bladder is probably not emptying fully. 

The day after I got these tests done, I had a meeting with a nurse practitioner from the urology department to talk about what was going on. To help the urinary frequency, she said I should start double voiding (pee, wait 10 seconds, then try to pee again to make sure I am emptying my bladder fully), drink more water during the day and hardly any at night so I hopefully won't be getting up all night, and going to the bathroom a half-hour before bed, then right before bed to help with the previous issue. She also put me on a stool softener and fiber gummies just to make sure I wasn't constipated. After my appointment, she called me back saying that she wanted to start me on a medication that is supposed to treat an overactive bladder. So, I did everything she said for the last two weeks, and unfortunately, not much has helped. 

I met with her on a Wednesday and the first weekend after that was pretty much hell. I was having terrible diarrhea (sorry TMI, but this is real life!) and the new medication was making me so nauseous. But I decided to stick it out in the hopes that my body would soon get used to it and it would start helping me. After about a week or so, the nauseous died down and now I only get it a little bit after I eat. That brings me to Wednesday of this week. My bladder pain had actually decreased a lot which I was obviously happy about, until Wednesday when it came back at full force and worse than it's ever been. It's now Friday when I'm writing this and the pain hasn't subsided at all, so I don't know what's going on. I had another meeting today with the nurse practitioner from Boston Children's and I originally didn't hear what I wanted to hear. Despite me telling her that the stool softener wasn't helping and it was actually making everything worse, she still thought I was constipated, however, I spoke up for myself because I know my body and I know I'm not constipated, so she took me off the stool softener and I am going to continue with the fiber gummies and try to eat more fibrous foods. Next, she wasn't very happy that the bladder medication was making me nauseous, so she was wary about increasing the dosage since it hasn't really helped at the dosage I'm at. I convinced her to up the dosage and I would start taking it once I got home for break and it would be easier to deal with nausea if I had any because I'm desperate for relief. Then she wanted me to come in to get a special x-ray to rule out constipation. 

Like you may have seen on my Instagram, I really think that I have a disease called interstitial cystitis (IC) because I have all the symptoms (urinary frequency, peeing a lot at night, and bladder pain), and it is very common in people with endometriosis. I was hoping at this meeting that we would finally talk about me having IC, but we didn't. However, I got a call from her a little bit ago that she changed her mind and she thinks we should start looking down the path of IC. She wants me to keep a diary of how many times I pee and how often and she's going to call me on Monday to discuss it. If it doesn't get any better, then we're going to start talking about IC and she's going to put me on an antibiotic that will hopefully help. I was really happy by this news because I have thought I have had this disease for months now, but I felt like no one was listening to me, even when I present with all the symptoms. It may seem crazy to people outside of this community that I am happy to have someone say I probably have another disease with no cure, but after all the medical trauma that I and many other people with endo and related diseases have gone through, it feels so good when someone validates your pain. 

I am not sharing this with you because I want your pity or that I'm trying to complain, I'm sharing this for education because IC is also another disease that people don't know that much about (hence not having a cure). What I want you to take away from my story today is that you shouldn't be afraid to speak up for yourself. You know your body better than anyone, no matter what anyone else tells you. If you have done the research and you feel strongly about something, then PLEASE bring it up to your doctor because you might not find any answers if you don't. I spoke up and I got the answers I was looking for, thankfully. Also, please feel free to reach out to me on my Instagram @endoisnottheendblog if you want to talk about anything endo or IC related because I know it really helps to talk to someone who understands! 

BOOK REVIEW: Living with Endometriosis by Samantha Bowick

Recently I've been reading a lot of books about endometriosis (more book reviews coming soon) to better inform and educate myself about the disease I live with every day. I think it is so important for us to do our own research about this disease because unfortunately there isn't a lot of information out there and we can't always trust everything our doctors say. Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options by Samantha Bowick is different from any other endometriosis book I have read because Bowick isn't a doctor, she is a real woman who suffers from endometriosis, and I think that makes her more qualified to share her life with endo than any doctor. 

Reading about endometriosis from a sufferer's perspective is so different than reading a book by doctors. The books I have read written by doctors feel impersonal and like they are just stating one fact after another. Bowick makes sure her audience knows she is not a doctor and reiterates multiple times that just because a treatment worked or didn't work for her, that doesn't mean everyone will have the same experience, which I believe is something doctors lack when writing about this disease.

Bowick begins her book by telling her endometriosis story to ensure the endo sufferers reading her book do not feel like they are alone. After she tells her story, she has nine more chapters: Endometriosis Explained, Surgical Treatment Options, Non-Surgical Treatment Options, Alternative Medicine Options, How to Find the Right Doctor, Lifestyle Changes, Related Illnesses, How Endometriosis Affects Those Around Us, and Awareness. I could easily tell that each chapter was thoroughly researched and they were all extremely informative. A little touch the Bowick added that made the book so much for personal for me was sharing her experiences with everything she talked about. This is one of the aspects that makes her book more informative than a doctors book because doctors cannot contribute those real-life experiences like Bowick can. 

If you are an endometriosis sufferer or have a loved one who is, I 100% recommend this book! It is the perfect mixture of informative and personal that makes an endo sufferer, like me, feel not so alone and that there are many things I can do for myself to make my quality of life the best it can be. If you read this book, you will see that Bowick's endo journey was anything but easy and she still persevered and used her knowledge to help other women like her, so thank you, Samantha!  

Immunocompromised During COVID-19

This pandemic is a scary time in the world for everyone, but please take a second to think about those who are immunocompromised, like people with Endometriosis. On the outside, I look like a healthy young woman, but on the inside, I have Endometriosis and asthma that both cause my immune system to be weaker than the average healthy person. If you have the mindset that you are safe from COVID- 19 because you are young and healthy, then you need to stop thinking that way. Yes, you yourself may not get it, but what about your grandparents, your uncle with cancer, or your friend who has Endometriosis or some other chronic disease, what about them? By not staying inside, you are putting everyone else in danger. I know this is not ideal, no one thinks that it is, but this will be over a lot sooner if everyone follows the rules and stays inside. This may not seem like a big deal to you, but this isn't about you. This is about doing what is right and safe to benefit the greater good. This is bigger than all of us and the least we can do is listen to the doctors in charge of this pandemic and stay home. People like me shouldn't have to be scared to go outside and take a walk. We should have comfort in knowing that everyone is following the rules, but unfortunately, we don't. So please, the next time you want to go hang out with your friends, think about all the immunocompromised people in the world, and hopefully, you'll make the right decision to stay home.

Myths and Misconceptions

Myth: Endometriosis is just a really heavy period.
Women with Endo may experience a really heavy period, but that is just one of the many symptoms.

Myth: Heavy bleeding means you have Endometriosis.
Again, it could be a sign someone has Endo, but it is not the only reason for heavy bleeding.

Myth: Extreme pain is normal during your period.
Extreme pain is NOT normal during your period, but many women are taught that it is. If you have extreme pain, you might want to talk to your doctor about Endo.

Myth: Young people cannot get Endometriosis.
This is completely false, I was diagnosed with Endo when I was 14. Yes, it is more common in older women, but that doesn't mean younger women can't have it.

Myth: It's all in your head.
IT'S NOT ALL IN YOUR HEAD AND DON'T LET ANYONE TELL YOU THAT!!

Myth: The amount of Endometriosis you have corresponds with your pain level.
This is not true for Endo. Some women can have a lot of Endo but have no pain and are only diagnosed when she starts having infertility issues. On the other hand, one can have only a little bit on Endo and still experience extreme pain.

Myth: Something you did caused your Endometriosis.
Doctors don't know the cause of Endo yet, but they do know it runs in families.

Myth: Endometriosis means you cannot get pregnant.
This is not necessarily true if Endo is caught early enough, women are still able to get pregnant.

Myth: Pregnancy cures Endometriosis.
This is false because there is no cure to Endo. The only thing pregnancy does is eliminate one's period, so that could cause a little less pain than usual.

Myth: Hormonal treatment cures Endometriosis.
Again, there is no cure for Endo, but hormonal medications are used for treatment (meaning they can take away some of the pain, but not all of it).


https://www.webmd.com/women/endometriosis/myths-facts-endometriosis#2
http://endometriosis.org/resources/articles/myths/

Endometriosis in College

As some of you know, I began college at the beginning of August and it has probably been the biggest change in my life. Although I love my college and all the friends I have made here, I have been really struggling with my endo pain. It has been as lot worse than it has been in probably over a year now, maybe even close to two years. Going into college, I knew this was a possibility; new food, new environment, new living sitution, etc. However, I didn't think it would be this bad. For about the first month, everything was great. I was acclemating well and really enjoying my time at college. Over the past two weeks, my pain has skyrocketed for some unknown reason and has completely drained me. While trying to navigate my first semester in college, I am also involved in my school's church choir and their all female a cappella group. While I love doing all those things, it means that during my "down time" I am always doing homework and don't get a lot of time to relax, even on the weekends. I have never let endo interfere with my school work (thanks to my parents), so I just have to keep pushing through one day at a time. Even though I have amazing family and friends that always support me, it is still so isolating because I have never met someone my age with endo. Which is especially hard not being in the comfort of my own home. Some things I've been doing to help cope with my pain are using my heating pad a lot, trying to eat as healthy as possible, getting up and moving around as much as I can, getting to bed at a  reasonable time, and knowing my limits. Sometimes I do feel like I'm missing out on fun things my friends are doing, but right now my focus is getting "better" (meaning getting back to where I was before college pain-wise) and listening to what my body is telling me. Luckily, I already had an appointment scheduled with my doctor at Boston Children's for last Thursday, and he said it is likely that I'm just ovulating and my pain should go away soon. If not, I'm going back in two weeks for an ultrasound and another appointment. Hopefully he's right and the pain will go away soon, but for right now it really is agonizing, so I keep trying to remind myself, endo is not the end.

Also if anyone has any tips about coping with chronic pain in college, please let me know!

Happy Endometriosis Awareness Month!

Hey everyone! Wow, it's been a while.  I've been super busy with school and figuring all the college stuff out.  Well, it's that time of year again- Endometriosis Awareness Month! Over the past six months or so, I've seen so many new commercials and celebrities advocating for Endo! It gives me a lot of hope that a cure is coming soon.

As for my pain, it's been on and off depending on my environment and stress level.  This week for example, I'm in my school show that opens Friday, so I know it's going to be a stressful week.  Since I know my stress level and pain are related, I'm going to try my best to stay as calm as possible.  If my pain gets worked up, it will make me even more stressed out, so I'm doing everything I can to keep that from happening.

A new thing with me is that I started getting back to the gym.  Exercise is something that doesn't make pelvic feel great, but I know it's necessary so I don't have other health issues in the future.  I've gone to the gym a lot over the past two months, so I'm really proud of myself.  I normally go for two or three weeks, then my pain gets really bad so I stop going, but this time I'm determined to not let that happen.  Now, I've gone enough that I'm committed to keeping myself healthy and I know my limits, so I can tone it down on a bad day if I have to.

I'm going to try my best to post on here on a regular basis from now on because my schedule is becoming less busy.  Keep on the look out for more Endo related things in the media because that is really helping our community! Thank you for reading and happy Endometriosis Awareness Month and remember, Endo is not the End!

How Endo Affects the Female Body

Happy Endometriosis Awareness Month! I am back again with my mission to spread awareness about Endo because we are still searching for a cure.  Below are real diagrams of how Endometriosis affects a woman's reproductive organs.  These diagrams primarily show the cysts that can grow on the ovaries, Fallopian Tubes, and lining of the vagina.  This causes extreme pain, especially having a reproductive system looking like the last diagram.  There are large cysts, overgrown tissue, and adhesions to a point where the ovaries cannot even be seen.  

Affects of Endo on the Body:

• Extreme fatigue 
• Inflammation of organs
• May cause infertility 
• Extremely painful menstrual cycles
• Painful bowel movements 
• Lower back and pelvic pain

Endometriosis affects the female body in many different ways, pelvic pain isn't the only that comes with Endo.  

https://www.womenshealth.gov/a-z-topics/endometriosis
http://www.idph.state.il.us/about/womenshealth/factsheets/endo.htm

No Motivation

When I first starting having symptoms of Endo, I wore sweatpants to school everyday because all all my pants would press to hard against my stomach.  I didn't wear any makeup and barely did my hair so I just looked lazy. I couldn't even sit at the desks at school because they were so uncomfortable. I would text my parents every single day telling them that I needed to come home because I was miserable  but they never picked me up and I never missed school. I would come home and lay in my bed whenever I had the chance. The only time I left the house was to go to school and the dozens of doctors appointments I had to go to every week.  I’ve started to feel this way again and it’s not something I like. I don’t feel good wearing what essentially are pajamas to school, but I have no motivation to wear anything else. The worst thing is, I have no idea why I’m feeling this way. It’s like it’s a chore to to get dressed and ready every morning. Simple things are so hard for me to do. I don’t know if it’s because I’m always exhausted or if my body is telling me I need to take a break. Either way, I don’t want it to last any longer. If any of you Endo ladies have an tips, please let me know. Thank you for reading and remember, Endo is NOT the end!

FINALLY GETTING NOTICED!!

Endometriosis is a disease that has been under the radar for too long.  Finally, in the last couple days, I have two different commercials for Endometriosis! These may be short commercials, but this is a huge step for the millions of women who suffer from Endo every single day.  These commercials list the symptoms of Endo and encourage women who suffer from these symptoms to ask their doctor about them immediately.  I could not wipe the smile off my face when I saw these commercials because this was really the first time I ever saw Endometriosis getting the recognition it deserves.

One of the commercials was for a study being held for women who have Endometriosis.  Doctors do not know how women get Endo, but they assume it's genetic.  There also isn't a known cure.  This study will help doctors come closer than ever to finding out more information about Endo and maybe even a cure.  If you are eligible for study, please check out the link below for more information. Thank you for reading and remember, Endo is not the end!   

Equinox Study Link:

https://www.equinoxstudy.com/?gclid=CjwKCAiAhfzSBRBTEiwAN-ysWJiANlEMLd_UFOCjUVPc3l4HgFZaouU8SaizbQTxFN8nAm2VC2-fzRoCOi0QAvD_BwE&mkwid=sRTkl7fpH_dc&pcrid=228741802789&pkw=endometriosis%20studies&pmt=p&slid=&utm_campaign=2017-18%20BTRSCTH%20Gen%20Endo&utm_content=Women%20with%20Endometriosis%20Pain&utm_medium=cpc&utm_source=google&utm_term=endometriosis%20studies

Rough Week

This week has been a rough one.  Just after I had an appointment with my doctor at Boston Children's Hospital, I started having agonizing pain again.  This time, it's been very frustrating because it's finals week at my school.  It's so hard to focus on anything when all you can think abut is your pain.  I can't use it as an excuse. My teachers would never believe me if I got a lower grade than I usually do and I say it's because I am in pain.  It's so hard going to school and having to put on a brave face.  If I told anyone what was wrong, they wouldn't believe me.  They would say I'm being dramatic because I always look happy.  I just can't look happy all the time, it's impossible. 

Taking my pain medicine in a hard thing for me. Since Endo is so out of the ordinary, I can't tell if my pain has stopped or gotten better because of the medicine or it just ran its course for now.  Right now, all I can do is lay in bed and try to study, but it's very hard to stay focused. If any of my Endo ladies reading this have any tips to be able to stay concentrated while in pain, please let me know.  For now, I am trying my best to stay positive and focused while allowing my body to rest and heal.  Thank you for reading and remember, Endo is not the end!

I'M BACK

Wow, it's been a long time.  I have been gone for so long because I have not felt any inspiration.  Since I have spoken to you all last, I started a new medicine that left me having awful side effects for about a month, so I was not in the mood for anything.  I want to talk a little bit about this medicine. This medicine is called Norethindrone and now that I have gotten pasted the bad side effects, it is working very well!  Some of the side effects that I experienced are:

• numbness or weakness
• sudden headache, confusion, pain behind the eyes, problems with vision, speech, or balance
• pain or swelling in one or both legs
• migraine headache
• swelling in your hands or feet, rapid weight gain
• sleep probelms
• severe pelvic pain
• chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling
• nausea, stomach pain, loss of appetite

Those are just some of the side effects that I experienced and I wanted to write a little bit about to say if you are taking this medicine or other Endometriosis aiding medicines, it does get better and you will not have these symptoms forever even though it may seem like it right now.  

I am going to try to post every week because I really miss it on here.  Thanks for still reading after all this time and remember, Endo is NOT the end!!

One Year...

The date February 24, 2016 is a day that I will never forget. It was the day I got my Endo surgery. It was exactly one year ago from today. I can't believe a whole year has passed! At this time last year the amazing doctors at Boston Children's Hospital were performing my surgery. This year I have had a significant less amount of pain than I did last year. I do have my flare ups at time, but overall, getting that surgery was the best decision I have ever made. I haven't had to be miserable everyday like I was last year.  I remember walking into that hospital last year being so nervous and hoping that the surgery would actually help me. I thought I would go through the whole process with no outcome. Luckily, I was wrong.  I started seeing results about three days after the surgery when I was starting to heal. I would recommend this surgery to absolutely every woman with Endometriosis (you can see my post about the surgery process for more information).  In reflecting on this past year, I have realized that I have been very lucky pain wise. Like I said before, I have bad flare ups at points, but those are nothing compared to the stabbing pain I was feeling every single day in 2015. Now, it has turned to a dull ache that I have everyday. It's manageable. That is all I'm looking for. I have learned that I will have to deal with this for the rest of my life. I find ways to push through the hard days like surrounding myself with people who love and support me. I know they won't see this, but I would like to thank my world renowned doctors at Boston Children's Hospital for helping me through this tough time. I will never forget the day February 24, 2016.

Endo and Life Update

Sorry I have been away for a while, but it has been a busy time for me so today I am going to be giving you all a little life update.  Tomorrow my high school drama production opens and of course, my friend randomly showed up two days ago.  I have not had a lot of pain for a while so this was a surprise to me. So here is a little story for you all.  I walked on stage two days ago during the run of our show and all of a sudden a wave of awful pain came over me.  I didn't know what to do because we were already half way through the scene.  I decided to keep going and then do the dance to the song that followed the scene. (This was not the best decision on my part).  After the song was over, I got of the stage as fast as I could and fell on the ground because I couldn't make it any further. I felt like my legs were going to give out under me. So, I had to lay there, on the ground, for the rest of the night since I could barely move. Thanks to my amazing friends who stayed by my side the whole night, I was able to cope until we got to go home.  I don't know what I would have done without them.  When you can't do something you love because of the amount of pain you are in, that is the worst feeling in the whole world.  During that night, all I wanted to go was get back on that stage and finish the show with my cast but I couldn't, no matter how hard I tried.  Yesterday and today have been rough as well.  I tried so hard to do all the dances last night, but I was just in too much pain. Today we had a snow day and I've been resting a lot so hopefully I will be better to perform tomorrow.  But what I have learned through this week is that, when life throws an obstacle your way, you just have to do the best you can to just keep going. I know that tomorrow I will be as well as I can be to perform. I just have to keep telling myself that Endo is NOT the end!

New Year, Less Pain...Hopefully

Another year has come and gone and there is still no cure for Endo.  This could be discouraging, but for me, I know there will be one very soon.  2016 was a year of many ups and downs for me and my Endo.  Instead of focusing on the negative things about my Endo this year, I decided to make a list of all the positive things that happened with my Endo this year.

1. I went to Boston Children's Hospital and got to talk with my world renowned doctor to discuss the pain I was having.
2. The doctor I spoke to said he would say I almost definitely had Endo.
3. I got my first laparoscopic surgery to diagnose and temporarily destroy my Endometriosis.
4. I was almost completely pain free for a couple of months.
5. I have only had a couple of big flair ups since February when I got my surgery.
6. I am now able to have fun and not be miserable all the time.
7. I am able to participate in fun family activities that I was not able to before.
8. I do not have to text my parents everyday saying I need to come home from school.
9. I can say "yes" to a lot more activities with my friends. 
10. I have had an amazing support system of friends and family to help me through this difficult journey.

It is a new year which means a fresh start for all of us.  Leave the pain and the struggling in 2016, this year is going to be way better for all of you!  I am positive that this year people will know more about Endometriosis and researchers will be even closer to finding a cure for all of us.  Do not give up because this year WILL be better! Always remember, Endo is NOT the end!

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!