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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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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Back to School with a Chronic Illness- Tips

 It's that time of year again when all of us students are getting in the swing of school. I know I certainly am. I know better than most people how hard going back to school with a chronic illness is, so today I wanted to share the tips I've developed over the last five or so years of going back to school with a chronic illness.

On good days, try to get a lot of work done so you have more time to relax on bad days- I always try to get ahead on good days because I know there's eventually going to be a bad day where I'm not going to want to do any schoolwork 

See if you can get accommodations through your school- especially if you're in college, I've found this to be incredibly helpful with living and diet accommodations

Dress as comfortable as possible to make it through class- no one's really paying attention to you that much to care what you're wearing (and if they are they need to get a life)

Always have pain relievers with you on the go- whether it's ibuprofen, icey hot packs, or a Tens Unit, I suggest keeping it in your backpack with you at all times in case you start having a flare-up

Let your teachers/professors know what's going on if need be- I have found all my teachers/professors to be extremely understanding when I'm having a hard time (but they can't give you any help if you don't ask)

Get involved in clubs and activities- this has honestly been my saving grace since I was diagnosed with endo! Like I've said previously, being busy is a pain management strategy for me because I don't have a lot of time to think about how I'm in pain. When I don't have anything to do is when I feel the worst.

But also know your limits- don't completely overschedule yourself so that you never have time to relax because that won't be helpful to your mental or physical health 

Lastly, your health comes first- If you really can't make it to class one day because your pain is too bad, then don't go because you could risk making everything worse. Luckily online class has become very popular, so try and see if that's an option, or just get notes from a classmate. It's really not the end of the world (just don't get into a habit of missing constantly)

I hope all of you who are in school are having a great start to the school year and it has been pain-free so far! If you ever need any advice, remember my DMs are always open :)

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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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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!

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. 

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.