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!

How to Study with Chronic Pain

Since school is starting back up again after winter break, I thought I'd share some of my favorite strategies I use when studying/doing school with endometriosis/chronic pain. Studying seems like such a simple thing, but it's just another thing made harder by endo and the pain that comes with it. Comfort is always my top priority because it is something I can control to make myself feel my best, so I hope these strategies help you!

1.  Find a comfortable seat- I find that a seat cushion helps me a lot and it's okay to sit in your bed if you have to
2. Take breaks when you need them
3. Sit with your heating pad on (this is something I do all the time)
4. Get up and walk around to loosen things up
5. Start studying several days before the test in case you have a flare the day before
6. Wear comfortable clothes (leggings are seriously my best friend)
7. Drink plenty of water
8. Prop your laptop/books up so you're not hunching over your desk
9. Make a comfortable study space in your room if you're not feeling well enough to make it to the library or another building 
10. If you think it's necessary, talk to your teachers and/or the accommodations office if you need extra time or any another accommodations because of your chronic pain 
11. Try all your favorite pain coping strategies while studying 
12. Finally, don't be too hard on yourself!

My Health Goals for 2021

 Happy New Year everyone!! 2020 was a hard year for everyone around the world but now is a chance to start fresh and create some goals for the coming year. The second half of 2020 for me was focusing a lot on my health. In the context of this post, health means my chronic illnesses, my pelvic floor dysfunction, and eating an anti-inflammatory diet. I plan on making 2021 a year about focusing on my health, listening to my body, and hopefully minimizing my pain. So, for my first blog post of the year, I wanted to share some health goals I have for myself!

1. Continue going to pelvic floor physical therapy regularly 
2. Do all the stretches, exercises, and techniques my PT gives me every day
3. Try harder to eat an anti-inflammatory diet (it was so hard around the holidays!)
4. Talk to my college's dietitian about foods I should eat while at school that won't work up my dairy, sugar, and gluten sensitivities 
5. Get out for walks more
6. Drink 64 oz or more of water every day
7. Continue taking the supplements that are helping my urinary tract health
8. Get plenty of sleep every night
9. Make sure I don't overly stress myself out since that works up my endo pain
10. Continue writing and posting a blog post every other week
11. Bonus: Try my best to achieve all these goals, but not be too hard on myself if I miss a day!

If you want to focus on improving your health like me this year, then I recommend making a list like this and sticking to it. I chose goals that I think are attainable for me because I have already been doing them, so make sure you are making goals that are attainable to you, and don't be too hard on yourself. I make a to-do list every day because it keeps me motivated to check things off my list and so I know I've completed everything I wanted to for the day, so I recommend that too. I hope you have had a great start to the new year and I'm wishing you all happiness, safety, and health in the year to come!

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. 

Endometriosis Gift Guide

 With the holiday season upon us, I decided to do something I've never done before and made an endometriosis gift guide! This will consist of products that I think are essential to people struggling with endo or other chronic illnesses that would make great holiday gifts! 

1. HEATING PAD 

Every person with endo needs a heating pad if they don't have one already! A heating pad helps with pain and relaxing muscles and is a great gift for anyone with chronic pain.

Purchase: https://www.target.com/p/purerelief-deluxe-gray-heating-pad/-/A-76550894?ref=tgt_adv_XS000000&AFID=google_pla_df&fndsrc=tgtao&DFA=71700000049427611&CPNG=PLA_Health%2BShopping_Local&adgroup=SC_Health&LID=700000001170770pgs&LNM=PRODUCT_GROUP&network=g&device=c&location=9002443&targetid=pla-653428528000&ds_rl=1246978&ds_rl=1248099&gclid=CjwKCAiA5IL-BRAzEiwA0lcWYpTZ_BtMEW3PAMIXE_BUBI5Ttui_8777HzoVzIyolToQ2YqneLkfuxoCkyMQAvD_BwE&gclsrc=aw.ds

2.  HEATED BLANKET 

I love my heated blanket because my dad always keeps our house so cold! It's vital with endo that we are not tensing up our muscles when not necessary, and a heated blanket is a great way to help with that. 

Purchase: https://www.kohls.com/product/prd-4646884/biddeford-electric-heated-microplush-throw.jsp?skuid=30982468&CID=shopping30&utm_campaign=BLANKETS/DOWN/THROWS&utm_medium=CSE&utm_source=google&utm_product=30982468&utm_campaignid=9836151830&gclid=CjwKCAiA5IL-BRAzEiwA0lcWYu8su8YfkBAw51g7BjFD0Z0UUsQ2aJ6I1w_fjV_ydS06ZqgCzBjPvxoC8hIQAvD_BwE&gclsrc=aw.ds

3. TENS UNIT

This is a must-have for any endo sufferers out there. You put the tens unit patches on your stomach, and it basically confuses your nerve endings from feeling pain.  This is great for when you're going to be out of the house for a while away from your heating pad. I'm going to link one with excellent reviews from Amazon, but there are a million different kinds, so make sure you do your research!

Purchase: https://www.amazon.com/Massager-Lifetime-Warranty-Rechargeable-Stimulator/dp/B079GG3HNX/ref=sr_1_2_sspa?dchild=1&keywords=tens+unit&qid=1606504711&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFRRDk1Uzc1SkFBTlEmZW5jcnlwdGVkSWQ9QTA0NzAwMzIxWTVISVJSVTA4MlY1JmVuY3J5cHRlZEFkSWQ9QTAwNjQ0NzAyVDY0S0RRQlcxSUhOJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==

4. NO, THANKS ENDO MERCH

If you've seen my Instagram lately, then you know I've been loving my new sweatshirt from No, Thanks Endo! The design is so cute, and the fabric is sooo soft. They got my size perfect, and I would wear it every single day if that was socially acceptable! This is a small business founded by one of our fellow endo sisters, so it would be great if you could support her. I got a sweatshirt, but there are t-shirts, stickers, and so much more!

Purchase: https://nothanksendo.com

5. RED BUBBLE STICKERS 

Red Bubble stickers (or any endo related stickers) are the perfect stocking stuffer for someone with endo to decorate their water bottle or laptop with. Red Buddle has a huge variety, and they are very inexpensive. The good thing about Red Bubble is that you are supporting independent artists who post their work there. Plus, the stickers are so cute!

Purchase: https://www.redbubble.com/shop/?query=endometriosis&ref=search_box

6. COMFORTABLE LEGGINGS

The best thing for an endo flare (or every day if you're like me) is a good and comfortable pair of leggings. In the winter, I live in leggings because they're the only thing that feels comfortable on my stomach, and I know a lot of other endo sufferers feel the same. I'm going to link my favorite American Eagle Aerie leggings below because those are comfortable and inexpensive, but I also really like Athleta leggings if you're looking for better quality, more expensive ones. 

Purchase: https://www.ae.com/us/en/p/aerie/leggings/7-8-leggings/offline-goals-high-waisted-legging/1701_5091_073

7. SLIPPERS 

A good pair of slippers are a must for comfort, especially in the winter. I'm linking my favorite ones below, and I seriously wear these every day of the year.

Purchase: https://www.llbean.com/llb/shop/503422?originalProduct=18664&productId=816066&attrValue_0=Brown&pla1=0&mr%3AtrackingCode=7354AF02-BFE7-E511-80ED-00505694403D&mr%3AreferralID=NA&mr%3Adevice=c&mr%3AadType=pla_with_promotiononline&qs=3125148&pcd=THANKS15&gclid=CjwKCAiA5IL-BRAzEiwA0lcWYs7qEuw_3NQ-HubNm4Pty6Tg1JCz1WPzMeO5Edb7jJ_2V5g2EAQ0gBoCw_YQAvD_BwE&gclsrc=aw.ds&SN=MasterPrompt04_test&SS=B&SN2=FindabilityRecs05_test&SS2=A&SN3=FindabilityProd07_Cat&SS3=B

8. WEIGHTED BLANKET 

I got a weighted blanket for Christmas last year, and it was something I never knew I needed! It's so relaxing and gives you the rest you need. 

Purchase: https://gravityblankets.com/products/gravity-blanket?variant=32408701304906

9. ENDO BOOKS 

You all know that with the extra time from quarantine that I've been loving reading books about endo and learning more about my body. I completely recommend any endo book to an endo sufferer on your list because it is always great to learn more about your body and hear other peoples' stories. My favorite ones so far have been Vagina Problems by Lara Parker, Ask Me About My Uterus by Abby Norman, and Living With Endometriosis by Samantha Bowick, but there are so many options to choose from!

Purchase: https://www.amazon.com/s?k=endometriosis+books&ref=nb_sb_noss_2

10. A.W.A.R.E NECKLACE 

The company A.W.A.R.E sells necklaces for all sorts of diseases and illnesses for people to wear and be empowered by them. I have my yellow necklace for endometriosis and the company even shared my endo story on their Instagram!

Purchase: https://awarecauses.com

I hope you all have a happy and healthy holiday season!

*Disclaimer: None of these brands have asked me to talk about them*