WHAT IS IBS?

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

Definition:

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

Symptoms:

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

Cause:

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

Triggers:

• Certain foods such as dairy products 
• Stress

Risk Factors:

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

Cure:

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

Treatments:

• Diet changes 
• Medications
• Therapies 

Follow me on social media!

Instagram: @endoisnottheend

Twitter: @endoisnothend

Facebook: Endo Is Not the End 

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

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

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

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

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

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

Being In Tune with Your Body

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

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

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

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

Follow me on Instagram: @endoisnottheendblog

Things You Should NEVER Say to Someone with Endo

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

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

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

INFERTILITY AWARENESS WEEK

 Once again, I'm doing a blog post about something I don't personally struggle with, but a lot of people with endometriosis do. This week is Infertility Awareness Week and I think it is very important to tell people trying to get pregnant out there that your ability, or inability, to have a child doesn't define you. Since infertility is another one of those taboo topics (for no reason at all), I'm going to share a little more information about it. 

What is infertility?

"Infertility is a disease of the reproductive system that impairs one of the body's most basic functions: the conception of children."

What is normal fertility and when does it become infertility?

If you've been trying to get pregnant for more than a year, you may have infertility. There are many factors that go into it: 

• on the production of healthy sperm by the man and healthy eggs by the woman;
• unblocked fallopian tubes that allow the sperm to reach the egg;
• the sperm's ability to fertilize the egg when they meet;
• the ability of the fertilized egg (embryo) to become implanted in the woman's uterus;
• and sufficient embryo quality.

How common is infertility?

Infertility affects 10%-15% of couples, which makes it a very common disease. 

Causes of infertility:

• Ovulation disorder 
• Blocked fallopian tubes
• Pelvic inflammatory disease
• Endometriosis
• Congenital anomalies
• Uterine fibroids 
• Azoospermia (no sperm cells are produced)
• Oligospermia (few sperm cells are produced)
• Genetic diseases (cystic fibrosis, chromosomal abnormality)

What is Intrauterine Insemination (IUI)?

"IUI works by putting sperm cells directly into your uterus around the time you’re ovulating, helping the sperm get closer to your egg. This cuts down on the time and distance sperm has to travel, making it easier to fertilize your egg."

What is In Vitro Fertilization (IVF)?

"In IVF, eggs are surgically removed from the ovary and mixed with sperm outside the body in a Petri dish. After about 40 hours, the eggs are examined to see if they have become fertilized by the sperm and are dividing into cells. These fertilized eggs (embryos) are then placed in the woman's uterus, thus bypassing the fallopian tubes."

However, IUI and IVF are expensive and not a possibility for every couple. 

Infertility is, unfortunately, something a lot of people experience, so you are not alone. It is important to keep talking about diseases like this so they can get more attention and research someday.

Source: https://www.reproductivefacts.org/faqs/frequently-asked-questions-about-infertility/ 

WHAT IS ADENOMYOSIS?

While I don't suffer from adenomyosis (adeno) myself, a lot of endometriosis warriors do. Adeno is actually considered the sister disease of endometriosis, but what is it? Well, since April is Adenomyosis Awareness Month, I thought this would be the perfect time to advocate for it!

Definition:

"A condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus (the myometrium)."

Symptoms:

• Heavy bleeding during the menstrual cycle
• Severe cramps
• Bloating
• Chronic pelvic pain
• Painful intercourse 

Cause: While the cause of adeno isn't known, there are a few theories-

• Invasive tissue growth: some believe endometrial cells from the uterine lining invade the muscle on the wall of the uterus.

• Developmental: Tissue is first formed in the fetus.

• Uterine inflammation due to childbirth: Inflammation of the uterine lining during childbirth may cause a break in the boundary cells that line the uterus.

• Stem cell origins: The most recent origin story theorizes that bone marrow stem cells might invade the muscle of the uterus.

Risk Factors:

• Uterine surgery (c-section, etc.)
• Childbirth 
• Middle age (BUT adeno can affect people of all ages!)

Diagnosis:

Historically, the only way to diagnose adeno was through performing a hysterectomy (surgically removing the uterus) and examining the tissue. Now, doctors are able to use imaging technology like MRI or transvaginal ultrasound to see the disease in the uterus (yay for evolving medical technology!).

Cure:

The only way to cure adeno is through a hysterectomy and this is the route many people take who have severe symptoms (@endostrong on Instagram is one of my favorite endo/adeno bloggers and she is very open about her hysterectomy!). 

Treatments: 

• Anti-inflammatory medications
• Hormone therapy
• Uterine artery embolization
• Endometrial ablation (different than that for endo)

Sources:

• https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-causes/syc-20369138 
• https://www.webmd.com/women/guide/adenomyosis-symptoms-causes-treatments 

How to Advocate for Yourself!

     As many of us know all too well, being a woman seeking medical help is not easy. Years of stereotypes and sexism toward woman makes it extremely difficult for women to feel heard and believed when talking about pain, especially if it has to do with reproductive organs. I saw a post going around recently that said "Imagine if there was a chronic disease that caused men so much pain that they willingly underwent major surgery to remove their reproductive organs, based on a wild theory that it might 'cure' them. Just imagine." If endometriosis was a disease that affects people assigned male at birth, we would 10000000% have a cure right now, but we don't which is why it is so important to advocate for yourself. Since March is Endometriosis Awareness Month along with Women's History Month, I thought this would be a good post because it is something all women have experienced at one point or another. 

    When I was first trying to find a diagnosis for the mystery chronic pain I was having, my mom had to advocate so much for me because no doctor certainly was (even the female ones). As I've gotten older and now that I'm an adult, I think I am pretty good at advocating for myself because I know my body better than anyone. Now living with endometriosis for officially over five years, I can tell what's normal for my body and what's not, which is why I spoke up when I started noticing bladder problems in the fall. Unfortunately, many people with chronic illness, in general, have lost trust in the medical system because they have been told they are lying, being dramatic, or straight up ignored countless times (I haven't read a single endo book that doesn't talk about this). However, I've learned that if I go to my appointment confident with my questions and concerns written down, I'll actually make some progress. 

    Since I just bragged about being so good at advocating for myself, I want to give you my tips because I think this is so important. 

1. Write down all of your concerns (what pain you're having, triggers for it, when it started, etc.)
2. Write down every single question you can think of (you don't want to leave the appointment and realize you forgot to ask something)
3. Do some research on your own and come up with suggestions about what could be causing your pain (you could come up with something your doctor didn't originally think about, it's happened to me)
4. Be confident in your pain and know it is not in your head (unfortunately doctors may tell you this, but you know it's real)
5. Be firm with your requests and concerns, and schedule follow up appointments to make sure you aren't forgotten (doctors see so many people a day, you want to stay clear in their minds)

I know all of these tips are easier said than done, but if you keep practicing, I promise you can do it. Nothing bad has ever come from me speaking up for myself and every time I do, I am so happy with my decision. Good luck and feel free to message me @endoisnottheendblog on Instagram if you want to talk!