Prioritizing Friends in College (while having a chronic illness)

 I'm happy to report to you that since the last time we spoke, I am doing much better! I have been back on the daily grind of doing my internship, leading my clubs, singing, and spending time with friends. As my college experience is wrapping up shortly (I have less than 3 semesters left, so crazy!), I have made sure I am prioritizing my friendships here more than I ever have. Whether it's sacrificing a few hours of sleep or simply doing homework silently, but in the presence of each other, it's so important to create those bonds. These are the people that always support me when I'm not feeling well and have fun with me when I am. They often have to drag me out of my bed, but I'm always happy they do. Some of my friends and I are even going on a trip in a few weeks which is something I never would have thought of doing a few years ago when my pain was really bad. I want to share some of the things I try to remind myself of when I'm feeling guilty about having fun (even though it's ALWAYS okay to have fun:)

1. It's okay to lose a few hours of sleep if you're busy having fun and making memories with your friends!
2. I may not be feeling my best right now, but I know I'll be having fun once I'm with my friends!
3. College is the time in your life to be prioritizing friendships before you're all off in different places!
4. It's okay to count spending time together as just being in the same room- you don't need to always be doing something crazy and high energy!
5. It's OKAY to say yes more to things that aren't school and work-related!!!!!! (I'm definitely still learning this one)

All of these things are easier said than done and it's taken me three years of college to finally let myself have fun. I don't know if it's just me, but I always feel guilty about doing fun things if it's not productive. However, hanging out with your friends is productive and an amazing use of your time because you'll have those bonds and memories to last a lifetime! 

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

WHAT IS IBS?

Today I'm going to spread some light on another disease that often comes hand-in-hand with endometriosis. Patients are often misdiagnosed with irritable bowel syndrome, or IBS, when they actually have endometriosis because they have similar symptoms. However, this is another factor that contributes to the prolonging of finally getting an endometriosis diagnosis. So, what is IBS?

Definition:

"Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both. IBS is a chronic condition that you'll need to manage long-term."

Symptoms:

• Abdominal pain
• Cramping 
• Bloating
• Increased gas
• Changes in appearance to bowel movement
• Changes in how often one has a bowel movement 
• Weight loss diarrhea

Cause:

• Muscle contractions in the intestine 
• Abnormalities to the nerves that help with digestion 
• Severe infection
• Early life stress
• Changes in gut microbes 

Triggers:

• Certain foods such as dairy products 
• Stress

Risk Factors:

• Young 
• Female
• Family history with IBS
• Have anxiety, depression, or other mental health-related problems

Cure:

IBS is a chronic condition that cannot be cured, very similar to endo. 

Treatments:

• Diet changes 
• Medications
• Therapies 

Follow me on social media!

Instagram: @endoisnottheend

Twitter: @endoisnothend

Facebook: Endo Is Not the End 

Source: https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/symptoms-causes/syc-20360016 

How To Be a Good Advocate on Social Media (And Make Meaningful Connections to Your Audience)

 If there is one thing the world always needs more of, it's advocates. No matter the issue, meaningful work, and change simply don't get done without advocates and people pushing for that change to happen. About five years ago, with the persuasion of my family, I started this blog. It is the best thing that could have ever come out of being diagnosed with endometriosis because now I get to share my experience and knowledge with all of you! Some of you may want to do the same thing, but don't know how to start, which is why today I'm sharing tips on how to be a good advocate on social media while also making meaningful connections with your audience! 

1. Post either daily or as much as possible: The algorithms on social media are weird, but the more you post, the more it will spread your posts to a wider audience.
2. Use relevant hashtags: Hashtags are a great way to spread your posts to a wider audience that maybe wouldn't have seen it otherwise since they don't follow you. 
3. Follow other accounts that post similar things as you: If you follow other similar accounts, you can help grow both audiences and reach more people with your advocacy.
4. Share what you believe: As someone with a chronic illness trying to spread awareness about it, I have always found it important to share my own truth and lived experience. A lot of social media is fake and many people only share the good moments, but I like to show the good, the bad, and everything in between because there is a huge spectrum when living with a chronic illness. 
5. Use all forms of social media to spread your message: I use Instagram, Facebook, Twitter, and this blog to spread my message. I find that this way I can reach different demographics and age groups. Along with this, use all the media forms within each app. For example, on Instagram, I do regular posts, stories, reels, and videos to get my voice out there. 
6. Show your personality through your posts: You don't want your audience to find the information you're sharing to be boring, so put your own voice into it and make it interesting! 
7. Similar to #6, use plain language: You want to get information out to people in an accessible way. Most people aren't going to want to read something that's super sciency and hard to understand. 
8. BE YOURSELF: You will get people hooked on your posts by being yourself, so don't be afraid to do so!

If you've been thinking about starting a blog or social media account for something you're passionate about, this is your sign!! These tips don't just apply to chronic illness and health-related topics, you can use them for anything you are passionate about. Social media is such a great place to be able to share what you believe with a large number of people, and who knows, maybe you'll even meet new friends that way because I know I have! 

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

Being In Tune with Your Body

    It's been a little over five years since I was diagnosed with endometriosis, but I started fighting for my health long before that. When you struggle with a chronic illness that causes you to have chronic pain, you start to know your body on a deeper level than a person who doesn't have those struggles. Since you're trying to do everything you can to prevent pain, you know exactly what foods trigger your symptoms, what activities could be pushing you too much, how much sleep you need to get, certain ways you need to sit, stand, and walk, the list goes on and on. But the bottom line is, especially being a woman, I've had to fight for my voice to be heard and in order to do that, I had to become very in tune with my body. 

    Whenever I go to my variety of doctor's appointments, the nurses and doctors are always shocked at how well I know everything that's happening in my body and how I can pinpoint (most of the time) what is causing me to have symptoms. I tell them that I don't have a choice in the matter living with a chronic illness. Now, this isn't me bragging. I wish I didn't have to do this, but through experience, I know I won't get answers unless I bring suggestions with me to the appointment. Like I've mentioned before on here, I keep a health journal where I write everything I eat during the day, any pelvic pain I'm having, if I made a bowel movement, my stress level, any bladder pain, exercise, and an "other" column for other information I want to add. I do this because if I start having pain, I can look back and try to see if I can determine the cause. It also serves as evidence that I can bring to an appointment to back up my findings. 

    Being in tune with my body has helped me a lot, especially in the last year, but it's honestly exhausting. Having to pay attention and take note of every little thing you do in the day isn't fun and it takes up a lot of time and mental capacity. However, I'm willing to do it because it has helped me get accommodations through school, figure out the cause of my bladder problems, and start to figure out how to heal my injured tailbone, just to name a few. While I hope one day I won't have to do this because medical professionals will just believe me without me having to do their job for them, it is something that works for me right now and I encourage all of you to keep a health journal if you are able. 

Keep fighting, you got this, and remember, endo is not the end!

Follow me on Instagram: @endoisnottheendblog

Things You Should NEVER Say to Someone with Endo

 Sometimes it's hard to know what to say to someone struggling with a chronic illness, so today I'm going to give you some insight into what NOT to say to someone with endometriosis. 

1. Anything related to pregnancy: You never know what someone might be struggling with or if they even want kids, so it's best to avoid the subject unless they bring it up. 
2. You don't look sick: People with invisible illnesses often have to hide what they're feeling, so just because we don't look sick, doesn't mean we're not. 
3. Just get a hysterectomy: A hysterectomy, or removing the uterus, is actually not a cure for endometriosis. 
4. Shouldn't you be cured since you got surgery?: While the surgery can make us feel a lot better, there is still no cure.
5. At least it's not [insert more severe illness here]: Even though there are diseases worse than endo, you do not want to invalidate or lessen what anyone is feeling. 
6. Just take Advil: Endo pain is often a lot worse than what Advil can fix and saying this can once again invalidate how we are feeling. 
7. I get bad period cramps too: Endometriosis is a lot more than bad period cramps. It is a whole-body disease that causes excruciating pain throughout the entire month. 
8. Someone I know tried this and now they are cured: Once again, there is no cure for endo so bringing up stuff like this is not helpful at all. 
9. Have you tried this diet?: While some diets can be helpful for some people, they are not helpful for everybody. Whenever I talk about the diets I try to stick to, I try to make it clear that this is what has worked for me and I know that it won't work for everyone. 
10. Isn't period pain normal?: While light period cramping is normal, excruciating pain during your period and pain throughout the entire month is not normal. One of the major reasons why it takes people so long to get diagnosed with endo is because we are taught that really bad period cramping is normal when in reality, it's not. 

I hope this post was able to give you some insight into how to talk to someone with endometriosis about their illness. If you think something you say could be taken the wrong way in any situation, it's best not to say it. 

WHAT IS INTERSTITIAL CYSTITIS?

I've been talking about interstitial cystitis (IC) a lot on here, but it's also a disease that many people aren't aware of so I wanted to make a post explaining it all. As you know, I've been going to Boston Children's Hospital to figure out my bladder problems, and right now, they are treating it like it is IC. 

Definition:

"Interstitial cystitis is a chronic condition causing bladder pressure, bladder pain, and sometimes pelvic pain." My chiropractor and physical therapist basically explained it to me like this: since my bladder is so inflamed, it is sending the signal to my brain to empty it before it is full. When you continuously empty your bladder before it's full, it starts to shrink, like a balloon. This turns into a vicious cycle that's hard to get out of. 

Symptoms:

For me specifically, my symptoms include pain that feels like lasers shooting through my bladder, bladder frequency, and urgency. Some other common symptoms include:

• Pain in your pelvis or between the vagina and anus in women
• Pain between the scrotum and anus in men (perineum)
• Chronic pelvic pain
• A persistent, urgent need to urinate
• Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)
• Pain or discomfort while the bladder fills and relief after urinating.
• Pain during sexual intercourse

Cause:

There is no known cause for IC, but people will IC often have other chronic illnesses with chronic pain. For me, that illness would be endometriosis and it all has to do with my pelvic floor muscles. 

Risk Factors:

• Sex: IC is more common in women than in men. It is estimated to affect 3-8 million women and 1-4 million men in the United States.

• Body Characteristics: Fair-skinned people and redheads have a greater risk of IC.

• Age: Most people are diagnosed with IC in their 30s.

• Having a Chronic Pain Disorder: IC may be associated with other chronic pain disorders.

Cure:

There is currently no known cure for IC.

Treatments:

• Pelvic Floor Physical Therapy: this helps work on the pelvic floor muscles and stretch them out so your bladder can stretch back out again. I can't even describe how much it has helped me!

• Diet: eating an anti-inflammatory diet has also really helped me. Foods such as dairy, carbonation, sugar, and red meat are good to avoid to help ease bladder pain. 

• Biofeedback: Controlling the body's heartbeat, brainwaves, breathing, and blood pressure by monitoring them with sensors. This is a popular treatment method, but I don't have any personal experience with it. 

• Medications: there are certain medications that can be taken in pill or injection form that have been known to help people with IC. I don't have any experience with these medications either.

Source: https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357

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!  

Good Things About Quarantining with Endometriosis

This may be an unpopular opinion, but quarantining with Endometriosis is not that bad. Having a chronic disease makes you miss out on a lot of things because you never know when you're going to have a bad day. To lift spirits during this hard time, I put together a list of positives to focus on rather than negatives when it comes to having a chronic illness during a global pandemic:

• You get to work or do school from home!
• Many people with Endo have to miss work or school because they are in too much pain, but now it's a lot easier since we don't have to leave our houses.
• You can take a break whenever you want!
• I'm not sure about those who are working from home, but as a college student doing school at home, I can pretty much take a break whenever I need it which is really nice.
• You get to wear whatever you want!
• Having Endo, I hate wearing restricting pants like jeans or work pants, but even if you're on camera, no one can see you're wearing pajamas on the bottom!
• You don't have to feel bad about not making/canceling plans with people!
• I always feel terrible when I can't do things with my friends, but no one is supposed to be doing anything right now so I don't have to worry about it!
• You can do your work laying in bed!
• I don't know about the rest of you, but I have done a lot of homework in bed recently (which isn't necessarily the best thing) but it is definitely nice when sitting in the same position all day causes you a lot of pain.
• You don't have to feel pressure to have your hair and face all done up every day!
• I don't know about you, but I have barely worn makeup at all during this time at home and my skin loves it!
• You don't have to feel bad for taking time for yourself!
• For me, I always feel bad when I take time for myself to relax and destress, but I know that is something my body needs dealing with a chronic illness, so this is a great time to focus on yourself, whatever that entails. 

I know it's hard to not focus on the negatives and hardships during this time, but maybe this was meant to happen so everyone can slow done and appreciate the little things in life and take care of themselves. 

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!