tieayellowribbonforme

[tieayellowribbonforme]

Endometriosis

Endometriosis—the struggle is real.  Killer cramps are NOT normal.  Periods that last longer than 7 days are NOT normal. Heavy bleeding that soaks through a tampon every 2 hours is NOT normal; pain during sex is NOT normal. Bouts of diarrhea and vomiting that accompany every menstrual cycle is NOT normal. No, no, and no!  For many women, this reality is endometriosis at work.

Sad truth: Many of us are taught to downplay these symptoms. Our pain is diminished by mothers, sisters, friends and even health care professionals who convince us that everyone goes through this.

Maybe that is why, according to the Endometriosis Foundation of America, it takes 10 years on average to receive an accurate endometriosis diagnosis. That’s a decade, people! That’s 130 periods of agony, 912 days of someone asking you to take Advil and suck it up.  That…is not okay.

Endometriosis is pervasive.  It affects 1 in 10 American females of reproductive age and an estimated 176 million women worldwide. It occurs when tissue similar to the endometrium (the lining of the uterus) is found outside the uterus on other parts of the body.  

There are lots of symptoms that can vary among patients.  Pelvic pain is most common, as well as pain that coincides with menstruation.  Other symptoms include heavy cramps, long-lasting bleeding, nausea or vomiting, pain during sex and, unfortunately, infertility.  Some women may even experience symptoms throughout their entire cycle—a real drag.

In addition to these physical symptoms, endometriosis takes a toll on women’s personal and professional lives. Chronic pain can severely affect quality of life day-to-day; medical care can be extremely costly. Furthermore, absenteeism can alter relationships in the workplace and at home.

Despite the intense discomfort, many women do not realize they have endometriosis until they try to get pregnant. And because the disease tends to get progressively worse over time, approximately 30-40% of women who have endometriosis experience fertility challenges.

There is no simple diagnostic test for endometriosis—no blood, urine, or saliva testing can confirm the condition. The only way to verify endometriosis is to undergo a diagnostic laparoscopy with pathology confirmation of biopsy specimens.  

On the bright side, many endometriosis symptoms— including infertility—can be addressed after diagnosis. The gold standard for endometriosis treatment is laparoscopic excision surgery. This involves a careful removal of the entire endometrial lesion from wherever it grows.

The first step to getting there is recognizing that your pain is not normal and seeking timely intervention. The earlier endometriosis is detected and treated, the better the results. Tracking your symptoms will help make you more informed when you visit your doctor, and set you on a path to better (and less painful!) menstrual health.

For more information about Endometriosis, visit www.endofound.org

[tieayellowribbonforme]

A piece for the New York Times about Endometriosis:

http://well.blogs.nytimes.com/2015/03/30/endometriosis-is-often-ignored-in-teenage-girls/?ref=health&_r=0

#endo #endometriosis

[tieayellowribbonforme]

me: hoe don't do it

headache: becomes migraine

me: oh my god

[tieayellowribbonforme]

[tieayellowribbonforme]

I have this weird relationship with my chronic illness where I spend 75% of my time trying to pretend it doesn’t exist and the other 25% trying to explain that it DOES exist to a bunch of people who don’t believe me.

[tieayellowribbonforme]

The beginning to a journey--Part 4

Now, you’re probably wondering when I’ll get back to me, and Endo. So here we go.

My mom’s fight with cancer and my sister-in-law’s miscarriage forced the reality of Endometriosis on me. I couldn’t pretend anymore that reproductive health wasn’t important or a big deal, or that ignoring it and trying to deal with the pain would make it better. I couldn’t pretend anymore that it wouldn’t effect me deeply later in life, as it was already affecting me immensely in the present.

Independent research continued as more and more symptoms started to make themselves present. If I ever got a symptom that was out of the ordinary for my body, I tried researching it with a connection to Endo--and it was always connected.

Now let me clarify I have not had a laparoscopy yet. I am fully aware that a laparoscopy is the only way to truly verify that I have Endo. That is the next step on my journey with this. But....If all signs point to Vegas, you know you’re driving there. There isn’t really a doubt in my mind. The next steps will be to understand where, how bad, what type, and treatment plans. I harbor a lot of fear in moving forward, but also hope.

I’ve basically decided, as I said before, no more traditional birth control. At least not the same kind before that made me so unbearable sick. I’m not really gung-ho about Lupron either. It sounds terrifying. But who really knows what will happen. Every case is different, and there’s still so much to understand.

In the end (or I guess I could say the beginning) I want to let you know that I’m starting my journey. I’m starting my journey with understanding and fighting Endometriosis, and I’m looking for the advice and wisdom of those who have fought before me, and those who fight now. Endo Warriors! And I’ll be here to share with you along the way the things that I learn, and to support my Endo-Sisters as well.

I’m ready to get started.

#endo #endometriosis #laparoscopy #Endo Warriors #endo sisters #support #journey #part 4 #reproductive health

[tieayellowribbonforme]

The beginning to a journey--Part 3

I should’ve known my car would run out of gas, and when I went scrounging for loose change in the cracks of the seats to pay, I’d uncover those issues right where I’d left them.

It seemed that no matter how hard I tried, I couldn’t shake it. I couldn’t ignore the Endo, the idea of it, the pain--it haunted me. Out of no where in the middle of the night I’d just start researching it, absorbing all the information like a sponge and then inevitably losing it everywhere when my absorbancy failed and the tears spilled out of my eyes. I came to terms with the fact that Endo can lead to infertility, and can wrap around your organs like a snake. The infertility aspect really crushed me. Not to toot my own horn but my maternal instincts are surprising for my age. I’m like a baby whisperer, for real. From day one I felt as though I was meant to be a mother. So I cried and mourned for the babies I might possibly never have, and accepted that adoption is always a viable choice, and even discussed it with my boyfriend (we’ve been together 5 years). If there is one thing I can tell you about myself, it is that I am an optimist that carries an umbrella. I consider the worst, so that if the worst ever comes, maybe it won’t hurt as much. I’d had some crap happen to me in the past that taught me to expect the best in life, but also realize that shit happens. Of course women with Endo have had kids, so there is hope. But i’ll be 100% honest with you....Since I became a teenager, before Endo was a reality, I always had the nagging feeling I wouldn’t be able to have kids. I still have that nagging feeling. We’ll have to wait and see.

But back to the main story.

Tragedy struck our family again. I’m sorry this hasn’t been a cheerful story, and I’m not trying to purposely bring you down but it all is important in context. So keep reading, it does get better eventually.

In my last post you saw the picture of my family at Disney after mom’s fight with cancer. I mentioned my sister-in-law. Driving down to Disney, my brother and sister-in-law revealed to us that they were pregnant, and we were ecstatic. Shocked, but ecstatic. About a month later though...well you know how life goes. I got the text while sitting in the residence hall on campus (dorm...its not PC to say that anymore apparently). I was an RA and in the office doing some paperwork. I dropped my phone, I couldn’t see through the tears. I got out before anyone could see me. I ran upstairs bawling into my boyfriends room, which awkwardly was filled with some of our friends playing video games. They’d all thought something had happened to mom again, that maybe her cancer was back. But my sister-in-law had lost the baby, and that was the worst heartbreak I’d ever experienced.

The doctors said it happens a lot with first time pregnancies--they also were concerned she might have some cysts and fibroids that needed to be checked out because they might’ve been the cause. She started texting me, because she’d remembered me mentioning Endo before and said the doctors had mentioned it to her. In the end we never really found the answers. But here’s where you can at least begin to smile again.

That’s me, and mom, and 21 inch long, 9lbs 2oz of perfection that is my nephew. About a year after our lost angel, Rylan was conceived, and had a healthy delivery just one month ago, which I got to be a part of. We are immensely blessed, and I love that kid so much already.

Now, you’re probably wondering when I’ll get back to me, and Endo. So here we go.

#endo #endometriosis #loss #part 3 #research #infertility

[tieayellowribbonforme]

The beginning to a journey--Part 2

And here we are today.

At this current point in time it has been about two years since I have been back to the OBGYN clinic. My symptoms have become progressively worse, and I’m starting to come to terms with that. And by “coming to terms” I mean i’ve become so pissed off while also so terrified that i’m getting over my fears of dealing with it and working towards actually dealing with it.

You might be asking yourself why i’ve not been more proactive with this, so I guess I should do some more explaining.

Exam week of my freshmen year my parents came up to campus and told me that my mother had been diagnosed with Endometrial Cancer. Literally remember the exact day, exact moment. I was eating subpar chicken at Zaxbys. My parents were acting weird (ya’ll i’m really good at reading people btw) so I asked what was going on. So they told me. And I remember texting my boyfriend saying “holy shit mom has cancer” and I was so in shock that I just...stayed calm. It wasn’t a real calm obviously, more like calm before the storm, but I couldn’t fall apart in front of them when they needed me. My brother was stationed at an army base and in training to be a sniper so we didn’t even have the whole family together. It was...a hard time.

Mom’s first step was a hysterectomy--they hoped the removal would give her a clean slate and she’d be cancer free. Plot twist: It had spread through the endometrial tubes and she went from a hysterectomy to being diagnosed with stage three cancer.

I’ll wrap it up for you though--she had a year of chemo, had a year of radiation, and today is cancer free as far as we know, Thank God. Scariest two years of my life. She is basically my twin, I don’t know what I would’ve done if I had lost her.

We went to Disney World after that because who the hell wouldn’t go to Disney World after that. It’s the happiest place on earth, and one of her favorite places on earth. We went over Christmas and it was truly magic. That’s me in yellow next to my boyfriend in green, my brother on the left, his wife, my mom and my dad. My sister-in-law and her story will come into play later.

I guess I should get back to how this connects to me and the journey, and the not being proactive.

Paying for cancer treatments is mind blowing. Mom was taking shots that help you to re-grow bone, and they cost thousandssss of dollars. Most of which Insurance covers, but not all of it. My parents still paid thousands out of pocket, and still aren’t done paying.

So this is where I come in. To be honest it’s hard, and I felt almost selfish in a way, to come forward and say I was sick. My first visit to the Gyno cost us around 500$ out of pocket because believe it or not student health insurance really sucks.

So I stopped pushing the issue out loud, and started doing more independent research. I stopped pretending it was a serious issue--after all it isn’t cancer so it can’t be that bad...right? I pushed my issues and the Endo into the backseat and covered it with some magazines and used napkins and just kept on driving through life.

I should’ve known my car would run out of gas, and when I went scrounging for loose change in the cracks of the seats to pay, I’d uncover those issues right where I’d left them.

#endometriosis #endo #endometrial cancer #cancer #survivor #mom #family #part 2 #journey #issues #chemo #radiation #remission

[tieayellowribbonforme]

The beginning to a journey-Part 1

Well if I were honest with myself I wouldn’t say that this is the beginning of my journey with Endometriosis. That journey began at least 8+ years ago, I just didn’t know it.

However I think this is the beginning of acceptance in the purest form. This is the beginning of fighting back--understanding myself, and the women who are plagued with this. It’s the beginning of finding true support, and being there to support others like me.

I guess I will give a little background on myself to the Endo-sisters of Tumblr.

My name is Kaitlyn, I am 20 years old (turning 21 in August), and I have had a...less than fantastic time figuring out what has been wrong with my body. Since I began my “lady days” it has been an uphill battle. I’ll go ahead and tell you a little about the symptoms I have experienced over the years:

--Painful cramps. I don’t mean the kind of cramps that make you slightly irritable and uncomfortable. I’m talking hunched over, verge of vomiting, don’t want to move, debilitating cramps. But you know the drill, and many suffering from Endo get that.

--Fatigue. Like leave me here to die, I’ll just sleep for 13 hours and become a vampire. I am always exhausted, and if it’s that time of the month don’t even ask me to go anywhere or do anything because I will literally fall asleep.

--Migraines. These lovely visitors are relatively new and appeared within the last year or two. “Menstrual Migraines” caused by high levels of estrogen are my assumption (we’ll talk more about assumptions later). They come with awesome side orders of extreme nausea, full body pain at all major joints and muscles, and ear aches. I have been experiencing one and its side effects the past two days now this week, and I haven’t even started yet).

--Cysts. These unwelcome guests are still a mystery to me. Popped up aboutttt three years ago. The one on the right side of my lower back is a doozy and brings a decent amount of pain. One is developing on the left side but hasn’t really made its presence known yet. Coincidentally placed where ovaries lie on each side...but my Gyno (about to be former Gyno) doesn’t think they’re caused by Endo. Let’s just agree to disagree doc. I’m thinking maybe

And the things I wont elaborate on:

--Hot flashes, irregular periods, pelvic pain around ovulation, pelvic pain two to three days before periods, symptoms similar to those of IBS (esp. with lack of sleep, which happens often in college)

Here is what I can tell you about my experience with doctors so far:

The first time I went to the doctor about this was on my own, at college, when I was 18. I have had painful cramps all my life, as I said before. However I kept hearing the age old quote “It’s normal for girls to feel pain during their periods” (PSA: If you are experiencing extreme pain with your periods, It is NOT normal) so I never went to the doctor for that.

However, I was working out regularly and really started to feel some pain in my lower back (cue cyst forming). Long story short I went to the school doctor, he said it was probably fine and just from working out and to not worry about it (after he felt the cyst protruding from my lower back. How does that even make sense--he’s a jackass. And I don’t even say that due to this specific occasion, I had a few interactions with him and the man doesn’t even look his patients in the eye). I stopped going there needless to say because if you don’t have a cold or STD the campus health center can’t and won’t help you. End rant). But I did worry about it. Pain persisted, I finally got my mom to schedule me a OBGYN appointment.

Another long story short: Gyno-man did a ultrasound, couldn’t really see anything (shocker) but said based on my symptoms I most likely have Endo. At the time I was still 18--he said he didn’t want to do laparoscopy. Put me on birthcontrol. I became the sickest I have ever been in my life. I was throwing up 2-3 times a week in the morning, every week, like morning sickness. I lost five pounds from it, and some sanity. “The symptoms should subside after about 3 months”--plot twist, they didn’t. My lower back pain was worse than ever. My cramps were still awful. Every night about an hour after I took the pill I got unbearably nauseous. I quit birth control. I’m not sure i’ll ever touch it again until a doctor can find me the right level to take.

And here we are today. (end part 1)

#part 1 #endo #endometriosis #tie a yellow ribbon #pain #journey #women's health #migraines #menstrual migraines

[tieayellowribbonforme]

Sometimes the sanest thing to do is just wallow in the misery for a while. Then climb out, grab a towel, dry off, and go about living.

Kevin D. Weeks

Words of Wisdom Wednesday

(via endometriosis)

[tieayellowribbonforme]

If I had a nickel for every time a doctor said I’m “too young to have all these problems”. . .

I’d be like…