MY SIX YEAR ENDOVERSARY

 I say this every year, but I can't believe today marks six years since I was diagnosed with endometriosis! It feels like yesterday, but a lifetime ago at the same time. I was getting a little teary-eyed this morning thinking about how far I've come during these last six years. I went from being in debilitating pain and not being able to get out of bed as a 14-year-old freshman in high school to a 20-year-old college junior who is chasing her dreams. My 14-year-old self pre-diagnosis didn't see the light at the end of the tunnel. I thought that I would always be in intense pain because no medical professional would believe my pain. Fast forward to the present day, I am still singing, have a crazy busy schedule with all my clubs and activities, and I'm doing an internship full-time that I love. I have found a way to manage my pain the best I can through a combination of medication and pelvic floor physical therapy. A lot of people in the chronic illness world like to push either just medication or just holistic forms of treatment, but I believe every single body is different. It's often a combination of the two that work together to help people. 

For years I was only using medication to manage my pain which has been so helpful, but re-starting pelvic floor physical therapy has made all the difference for me. I would say this past year has been the best for me pain-wise. My bad days are far less frequent and I have become very good at pinpointing what is causing my pain and making the proper changes to fix it. Each year I try to learn more and more about my body and why it works the way it does. Able-bodied people don't have to worry about every piece of food they put in their body, every step they take so they don't throw their body out of alignment, or worry about having to cancel plans because they're in so much pain. And yes, that is very frustrating at points, but I'm willing to do all those things to help my body be the best it can be. 

I wanted to share a little update on my health recently. I've been a little frustrated because I have been dealing with incontinence over the last week or so which is something I've never experienced before. It's hard having no control over what your body does, but I have faith that this is just a phase and my body will get back to its normal soon. Other than that, my endo pain hasn't been around as much which is so nice. I'm still dealing with my injured tailbone, but the pain is so much better than it was before. I even met a new friend with endometriosis here at school and we've started talking! It's so nice to have someone who knows exactly what I'm going through in my everyday life!

I'm so proud of myself and what my body has been able to do for me over the last six years. There are many times that I get angry at my body because I feel like it's failing me, but I try to remind myself that it is first and foremost my home, it has stuck with me for twenty years, and it's not going anywhere any time soon. Thank you for coming on this journey with me over the last six years and I look forward to sharing more of my journey with you as time goes on! 

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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! 

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End of Semester Update!

 I'm back everyone and I apologize for my absence this past semester! I think it has been a crazy time for most people, especially those who are back to school and work after being at home for so long. Since my college required COVID vaccines, masks indoors, and weekly tests, we were able to get mostly back to normal, which means I was very busy. I was taking some hard classes, I was a student leader in four different groups, and I continued my summer internship into the fall. I'm not complaining though, because like I've said before, I actually really enjoy being busy because it takes my mind off of my endometriosis and other health problems. Now that COVID is ramping up again with the new variant, I'm very happy to be safe at home, fully vaccinated, and boosted. 

A lot of exciting things happened for me this semester! The most exciting is that I was accepted into an internship program at my school that is going to allow me to intern full-time in Boston during the Spring semester for school credit rather than taking classes. I always wanted to do this internship program in Washington D.C. as I am a political science major, but when it came time to apply, I realized that I haven't had a normal year of college yet and I don't want to leave campus for a whole semester. The Boston program allows me to live on campus and still participate in all my extracurricular activities while getting to commute into Boston during the day and get that real-world experience. After I was accepted into that program, I had to apply for internships. This process takes a lot of time from searching to applying to interviewing. I was lucky enough to get a few offers and I accepted an internship that I'm super excited about and I think is going to give me the clarity I need moving forward with my career. 

I did work full-time during the summer, but that work was mostly remote. Commuting into a big city every day is going to be a whole new experience and I will definitely share my experience here will all of you. I am definitely nervous about how this internship is going to affect my endometriosis pain. Anxious nerves and stress often cause flare-ups of my pain. Over the summer if that happened, I could just take a quick break to lay in my bed, however, I won't be able to do that this time around. Although don't get me wrong, I am very happy and grateful that this experience will be in-person after experiencing the pandemic for almost two years. I'm sure a lot of you reading this have full-time and in-person jobs, so I'm very curious, how do you handle your pain? 

I have been lucky this semester that my endometriosis pain has been mostly manageable! I had a few flare-ups here and there, but they didn't last very long. The combination of medication and pelvic floor physical therapy has really worked for me and I'm so thankful! A lot of chronically ill people are strong proponents of either full-on western medicine or other less common routes. I think it's different for every person because each body is different, but I've experienced the best results when both methods are combined. What works the best for you? What I've still been struggling the most with is my tailbone pain. It's been about 1.5 years since it's started, but I'm happy to report it is getting better with the help of pelvic floor physical therapy! Hopefully being able to go to PT consistently over the break will be the push my tailbone needs to fully heal. 

I feel like I've been rambling a lot, so I'm going to end this post here. Now that I'm going to be on winter break for about a month, I'm going to be posting on here more and I've been posting on my Instagram pretty frequently (@endoisnottheendblog). I hope you all are happy and healthy and are enjoying the holiday season with loved ones!

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ORGANIZATIONAL TIPS!

 This doesn't have much to do with chronic illness, but I want to share my organizational tips with you today. However, these methods help me to have everything prepared in case I'm having a bad pain day or I'm just plain tired (which is a lot of the time). Let's get started:

1. GET A TO DO LIST: This will literally save your life. I don't know how I got anything done before I had one. 
2. SET OUT EVERYTHING THE NIGHT BEFORE: I try to get my outfits set out and my backpack packed up the night before in case I need to take it slow in the morning.
3. USE A PLANNER: This will be your best friend if you're busy like me. Especially if you're a student, it's the best have all your assignments and activities in one place. 
4. PLAN OUT TIME IN THE DAY TO DO SELF CARE: For me, this means setting aside time to do all the activities from my pelvic floor physical therapy because I know they always help me feel better. It can be different for every person though!
5. CREATE FOLDERS IN YOUR EMAIL: This is something I didn't think I needed to do for the longest time, but once I did, it made finding old emails soooo much easier.
6. CREATE FOLDERS IN YOUR FILES: Similarly, this is so helpful and I have folders for literally the smallest things. When you're constantly turning in assignments, it's so helpful. 
7. ORGANIZE YOUR DESK: Having an organized workplace really does make you more productive and efficient.
8. HAVE A CLEAN ROOM: I know this sounds weird, but especially if you're working in the same place as you sleep, I find it so important to my productivity to have a clean room and made bed. If I don't, it just stresses me out and I'm not as focused on my work. 

I hope you found these tips helpful because they are really have gotten me through college!

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Back to School!

Some of you may have noticed that I took a month off from posting and that’s because the beginning of school has been crazy. The day I moved into school, I barely had any time to unpack because I had to go right to rehearsal for the choir I’m in and that pretty much lasted the rest of the day and the rest of the weekend. Does anyone else get super stressed when all their stuff is in boxes or not in its correct place? Well, I do and that’s what I was feeling like for several days before I had the chance to finally finish unpacking and decorating. Then it was time for classes to start. The good news is that I love all my classes! All my classes are within my major and minor, so I’m never bored and always learning something new. I don’t know if you know this about me, but I LOVE learning, it’s probably one of my favorite things which is why I love college so much; I get to learn about topics I’m actually interested in, unlike most of my classes high school. 

I mentioned in my previous post that I took on a lot this semester and I wasn’t sure how I was going to manage everything. Well, it’s been going pretty well so far! It was kind of a pain getting my schedule all worked out so I could be at every club meeting or rehearsal, but thankfully, I did it and this week everything was finalized. Last weekend, I had the honor of singing the National Anthem at the home opener football game at my college and it went so well! I’ve been singing the National Anthem at events ever since middle school, but I’ve never sung it for my college before, so I was a little nervous. But the President of my college said it was amazing (go me!!). 

I was able to get a single room this semester because of my medical accommodations and needing the privacy to do my pelvic floor physical therapy tasks, and that has been working out very well. While I miss having a roommate, I know I made the best decision for my health and that my body is definitely going to thank me for that this semester. With that said, I haven’t had any big flare-ups yet which I’m very happy about. Stress is one of my biggest triggers, so when I feel like I’m about to get overly stressed, I try to take a minute and relax so I don’t cause any other issues for myself. 

I was finally getting into the swing of things this week, then I got a cold. I was actually pretty scared at first that it was COVID, but I was tested and it's not thankfully. It's so weird how "normal" sickness hasn't really been a thing since the pandemic started because of masks and physical distancing, but as the world opens back up, I guess so does our susceptibility to other illnesses. Like this cold, you are always going to have things that interrupt your plans, but try to find the good in everything. Luckily this cold hit me over the weekend, so I'm going to rest up so I won't have to miss any classes next week.

If you are going back to school right now, I know it can be a very stressful time. My biggest piece of advice is to learn your triggers so you can try to avoid setting them off. Obviously, it’s not going to be perfect, but at least you are trying to do what’s best for your body. Remember, you can do this and endo is not the end!  

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WHAT IS CUPPING THERAPY?

 

Many of you have heard me talk about cupping therapy (or cupping) here and on my Instagram, but I've learned that most people don't know what it is. I was first introduced to cupping when Michael Phelps made it popular by putting his circular bruises on display at the Olympics. 

Cupping is a form of alternative medicine that has become popular over the last few years. I started using this method in pelvic floor physical therapy over the winter to help with inflammation and pain management in my back and tailbone. Still, people use it for many different reasons. So you can get a better understanding of cupping, and why it's helpful, I'm going to bring you through the basics.

WHAT IS CUPPING THERAPY?

Cupping therapy is an ancient form of alternative medicine that originated in China.

HOW DOES CUPPING WORK?

A therapist will put special cups on specified spots and create a suction to the skin and leave them there for however long they deem necessary. 

WHY DO PEOPLE USE CUPPING THERAPY?

There are many different reasons why people use cupping therapy, including:

• Pain
• Inflammation
• Blood flow
• Relaxation and well-being
• Muscle tightness

It has been compared to a deep tissue massage.

DOES IT HURT?

I decided to include this question because looking at pictures of cupping can be pretty offputting, so I wanted to share my experience. There are many different suction levels, so you must communicate with your therapist about what is too much, too little, and just right suction for you. However, if you are really trying to get the full effects of the cups, you can put them on a little tighter, and it will hurt at first, but after 30-60 seconds, the pain will go away. I haven't gotten up to the level of bruising you see on Michael Phelps; in fact, I've only ever had bruising one time because everybody is different and can only tolerate so much. But the goal is to add a little more suction each time so you can make progress.

WHAT DOES RESEARCH SHOW?

While there needs to be more and better research done on cupping, it has been known to help those with:

• Blood disorders 
• Rheumatic diseases
• Fertility
• Skin problems 
• High blood pressure
• Migraines
• Anxiety and depression
• Bronchial congestion
• Varicose veins 
• Overall muscle relaxation

Cupping therapy definitely isn't for everybody, but if you are looking for another method of pain management, I certainly recommend it! I always leave my appointments feeling so relaxed and in a lot less pain. But remember to always drink a lot of water after because it's sucking a lot of toxins out of your body. 

Source: https://www.webmd.com/balance/guide/cupping-therapy

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WORKING 9-5 WITH CHRONIC PAIN

 

Working 9 to 5 is something brand new to me that I started last week. I'm working two jobs this summer so obviously, I've had to learn how to manage this. Working 9 to 5 for the first time is challenging for everyone, but then you add in having to deal with chronic pain and it makes adjusting to this new schedule a lot harder. I want to preface this by saying that I love both of my jobs and I can't wait for the rest of the summer because I'm so lucky to be in both positions! However, sitting at my desk for hours on end isn't the best for my pelvic floor region. 

My whole life up to this point I've imagined myself as having a desk/office job in the future because due to my chronic pain, being on the move isn't my favorite thing. Now that I'm sitting at a desk in my bedroom for many hours a day, I might need to reevaluate that vision for myself. I think my ideal situation is where I can sit when I want to and move around when I want to because my body needs both of those things to keep everything in check. Although sitting at a desk isn't the most comfortable thing in the world, I've discovered a few things that have helped me make the best of the situation. 

The first is a laptop stand. This allows you to prop up your laptop so it's at eye level and you aren't breaking your back hunching over it all day. I got mine at the beginning of last semester and I think it's one of my favorite purchases ever. I'm still sitting in front of the computer for the same amount of time, but my back and neck feel SO much better. 

The second tool that has been so incredibly helpful to me for years is blue light glasses. These block out the harmful blue light coming from your computer or other electronic devices and makes having to stare at them all day way easier on the eyes. I used to get headaches all the time from blue light, but I don't anymore because of these glasses!

The third thing is a seat cushion. As I've mentioned here a few times, I've had an injured tailbone for about a year now, so seat cushions are an essential part of my everyday life. I use one on my desk chair at home and school, as well as one in my car. Even if you don't have tailbone or back issues, a seat cushion can still be really helpful for all-around comfort. 

And finally, the items I have purchased most recently, a mouse and mousepad. Not just any mousepad though, one with wrist support so you don't do any damage while using your mouse all day. This is the first time I've actually used a mouse with a laptop, but it's been so helpful because it allows me to sit up straight in my chair and not have to hunch over the mousepad built into my laptop. 

I'm really curious, so let me know on here or over on my Instagram, but how do you work while also dealing with chronic pain? I'm open to any and all suggestions!

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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 

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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! 

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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!

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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. 

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. 

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

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!

My Pelvic Floor Physical Therapy Experience...

Many of you who follow me on Instagram have asked recently if I could share my pelvic floor physical therapy experience and what I do at my appointments. PT is a very common treatment for endometriosis and interstitial cystitis, so I am happy to share my journey with you for my last blog post of the year!

Backstory: 

 My pelvic floor physical therapy experience started before I was even diagnosed with endometriosis when I was only 14. At that point, I had seen many doctors that could not find anything wrong with me, so PT was pretty much my last hope. My PT, who I still go to today, was the first medical professional to validate my pain and ensure me it was, in fact, real. This was huge for me as someone who was constantly told I was making my pain up and just being a dramatic teenager.  When I first started going to PT, I was diagnosed with pelvic floor dysfunction. Since I was (and still am) constantly in pain, I was always clenching my pelvic floor muscles, making them extremely tight. I actually learned this week at PT that when you have chronic pain, it doesn't just affect the muscles directly where the pain is; it affects all the muscles in the body if you've been in pain as long as I have. This has caused me to have hypersensitivity to touch to the point where I'm in terrible pain if someone simply pokes me in the arm, but that's a whole other topic. 

The first time I went to PT, I didn't go for that long because I thought that since I got a diagnosis, I didn't need to anymore, but I was very wrong. When I had an appointment when my endometriosis specialist this past January, he suggested I go back to PT. I knew it would help me and my pain, but I didn't know if I was ready to do that yet. A part of my PT is using vaginal dilators because my pelvic floor muscles are so tight to the point where I can't even use a tampon without incredible pain. Using the dilators before I found out I had a septate hymen (the skin over the vaginal opening that normally breaks when you're a baby, but it never broke for me) was extremely painful. I didn't think I would be able to put myself through that pain again. However, I knew it would be different this time because I had surgery to take care of my septate hymen over three years ago, so it should be all healed. 

Over the summer, my whole mindset changed when I started reading many books about endometriosis and how it affects so many different aspects of the body. PT was the missing part of the puzzle that I needed to complete to continue helping myself heal. I decided that I needed to go back to PT if I ever wanted to have a semi-normal life in the future. I was too young to understand its benefit the first time, but now I understand it is essential to my future. Well, it's safe to say that I'm very happy with my decision! I started back up in August, and I'm very motivated to get my body working the way I want it to. 

What do you do in pelvic floor physical therapy? 

Obviously, everyone is different, so I'm only here to share my experience. Everything I do in PT is about loosening up the muscles in my body, specifically my pelvic floor muscles, abdominal muscles, thighs, and lower back muscles, as well as keeping my body aligned. 

Like I said before, I use vaginal dilators to loosen my pelvic floor muscles. This is hard for me to talk about because it honestly embarrasses me that my body can't just work like everyone else's. It is hard for me to post this on the internet, but I decided that it's important before so many people with endo also experience pelvic floor dysfunction, and I don't want to be ashamed of it. All I want is to help at least one person like me and show them that they are not alone. The dilators are the most important part of PT to me because, like I said before, I really want a chance of living as much of a normal life as possible in the future. The pelvic floor muscles have three layers. I use the dilators to stretch the first two layers and a curved wand to stretch the deep third layer. And that's all I'm going to say about that because it's getting to the point of too much information, lol. 

To loosen my abdominal muscles, I do a couple different things. When I'm actually in PT, my PT will lightly massage my stomach to start loosening up the muscles. When I'm at home or at college, I use a tennis ball to massage those muscles myself, which is super easy.

To loosen my thighs, I do a series of simple stretches at home a few times a day that I'm going to put pictures of below. These stretches are very simple ways to keep those muscles loose. I also use a tennis ball to massage these muscles. 

To loosen my lower back muscles, my physical therapist does the same thing she does with my lower abdomen and lightly massages it. I keep saying lightly because it is very important to not do a harsh massage because it can actually cause those muscles to kick in and make them tighter, which is not what we want. 

Finally, to keep my body aligned, I do simple self-correction stretches throughout the day that I will show pictures of below. Staying aligned is something my body has trouble with at times, but it's so important that everything is in its place, or it's going to mess everything else up. 

Conclusion:

I would be lying if I said that having to do all these extra things wasn't exhausting because it is, but I'm happy to do it because I know that I'm doing everything I can to help my body. Like I said in a recent Instagram post (@endoisnottheendblog), everything I do with my body is intentional. The way I sit, the way I stand, the way I get in and out of bed, what I eat, what I drink, how I turn my body, and so much more has to be intentional, or it can throw something out of whack. Basically, my number one goal every day is keeping my body aligned.

I would be happy to dive deeper into any of the things I talked about in this post, but this is a general overview of what I have to do every day as a part of my pelvic floor physical therapy. Right now, I have appointments twice a week while I'm home for winter break so I can get some of my interstitial cystitis symptoms to calm down before I go back to school (I plan on doing a different post about what I do in PT to help my IC symptoms). 

I know this was a lot of information at once, but I hope it helped if you have pelvic floor dysfunction like me or just want to learn more. Pelvic floor dysfunction is a very real thing that affects so many people, and it can be embarrassing to talk about, but I want to work on not being ashamed about it and sharing my truth.