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!

My Endo Story but Written By My Adult Self

         June 10, 2015 is a day I will never forget. I thought it was just regular period cramps, but the extreme pain never went away. This day forward started the long journey to a diagnosis for this mysterious chronic pain. Endometriosis is a chronic disease that happens when uterine-like tissue grows in other places both inside and outside the pelvis, causing debilitating chronic pain. Looking back at it now, I started having pain when I first got my period two years before, but we’re taught that bad period pain is normal, so I never thought anything of it. I told my parents about this pain I was having constantly and we started going to doctor’s appointments. First to my mom’s gynecologist, then a gastroenterologist, a surgeon, the emergency room; they all dismissed my pain. Nothing came up on endless ultrasounds, CT scans, and x-rays. “You’re just being a dramatic teenager.” I heard this over and over again and it was so discouraging. I started to actually think it was all in my head until one day, months later, a lightbulb went off in my mom’s head when she in the midst of her endless research on what could be wrong with me: endometriosis. She remembered her mother and sister both struggled with this disease and she had a gut feeling I was too. “Teenagers can’t have endometriosis,” the gynecologist said, which couldn’t be further from the truth. I had never even heard of endometriosis before, but it was the first time I ever had hope throughout this whole process because I had all the symptoms. After much aggressive persuasion from my mom, my local gynecologist, who I never went to again after this, referred me to the adolescent gynecology clinic at Boston Children’s Hospital. 

         Within five minutes of sitting down with the world-renowned doctor there, he was certain I had endometriosis, and that day we scheduled the surgery to know for sure (endometriosis can only be diagnosed through surgery as it doesn’t appear on any imaging technology). A few weeks later, I had my first ever surgery, and just like my doctor suspected, he found endometriosis. Luckily we caught it early enough that it hadn’t done any serious damage yet, however that doesn’t mean it’s cured. It’s hard for people who don’t have chronic pain to understand the excitement that comes with getting a diagnosis, however, that’s what I felt. I was so happy to finally have answers and know that this pain wasn’t just in my head, but I also knew I had a long road ahead of me now living with a chronic illness. Although I’m in a lot less pain now after having surgery, I still have the day-to-day symptoms of chronic pelvic and bladder pain, back pain, pelvic floor dysfunction, and chronic fatigue. I try my best to combat these symptoms through birth control medication, pain medication, pelvic floor physical therapy, and of course, my trusty heating pad. However, the truth is, some days are just plain bad and I just want to lay in my bed with my heating pad and Netflix, and that’s okay. When I was first diagnosed, I wish someone told me to listen to my body and not push if I didn’t feel good. Now, I pride myself for being very in tune with my body and knowing my limits. Since being diagnosed five years ago now, I started a blog called “Endo Is Not the End” to help others like me so they don’t feel so alone. If you were just diagnosed with endometriosis, I know it feels so incredibly lonely, but I promise there is a whole community waiting to support you, so come find us.  

 

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!