ACOG and the Fight to be Heard

For years women have complained about the ACOG,
American College of Obstetricians and Gynecologists. ACOG has shown that they do not care about endo patients. Their literature doesn’t stay consistent from article to article. The ACOG is sponsored by pharmaceutical companies according to their industry sponsor web page. The reason this is such a big deal is because their standards of care rank medicine above surgery. Logically if pharmaceutical companies are paying their bills, they need to put money back in the companies’ pockets. ACOG’s literature claims that a hysterectomy should be considered as a last resort treatment for endo. Now this is totally preposterous because endo occurs outside of the uterus. Removing an organ that isn’t the cause of the problem makes no sense. Now, if you are suffering from adenomyosis, a hysterectomy makes perfect sense because adeno occurs within the muscle tissue of the uterus.

In adolescents, ACOG recommends diagnostic surgery with a 6 month following of a GnRH prescription such as Lupron. Lupron has been shown to have horrendous side affects for women of all ages. They also admit that endo is the number one cause of secondary dysmenhorrhea in adolescents. Because the ACOG does not deem excision surgery the best treatment path, many insurance companies do not deem it medically necessary so they don’t cover it. This can put women in tens of thousands of dollars in debt on top of the pain and emotional roller coaster they have been on.

ACOG needs to step up and do right by the millions of us EndoSisters across the nation. We rely on them to make medical decisions that benefit the rest of us!

Post-op Appointment

Thursday I went back to Dr. Furr’s office for my 6 week post-op check up. I feel amazing and according to him my incision looks great so I am good to go. I am back at the gym coaching and spotting. I am going to go back to working out this week, and I finish high school on 10th and graduate the 18th! Hallelujah!!

Having a hysterectomy at such a young age has changed the way I see the world. I no longer worry about carrying pain medicines with me all the time. I can eat whatever I want now. I can be a teenager again. There is a small chance that I will deal with Endo again in a few years but we are very optimistic that I can close this chapter in my life.

I am so thankful for all my friends and family that have stood beside me during these last 6 years dealing with this pain. I hope to continue to be informative and helpful to other teenagers going through this in their life.

How I came to have a hysterectomy

I am aware that I am extremely young to go ahead with a partial hysterectomy, but I know I am making the right decision for myself. How do I know that? I was ready to pursue a surgical treatment because I was miserable even on my medicines. I was given a few medical options I could try, but I wasn’t very comfortable with them. The Mirena IUD has issues. Your body may try to reject it for up to 6 months. I could play around with different birth controls, but those would take a while to level out. I had been offered Aromatase Inhibitors, but at the CEC they told me that they don’t really prescribe those.

So I looked at my surgical options. I could pursue a Presacral Nuerectomy (PSN) or a hysterectomy. A PSN is a procedure where they cut the nerve that innervates the uterus. It may provide temporary or permanent relief depending on the woman. A PSN may cause incontinence and other issues. I decided not to go forward with a PSN because should it not work, I would be going forward with the hysterectomy anyway. I was trying to prevent multiple surgeries.

I knew that I was supposed to have a hysterectomy because I was driving home and asking God what to do. A hysterectomy kept coming into my mind. I kept praying, “Lord I don’t want a hysterectomy. What am I supposed to do?” Again, hysterectomy popped into my mind. I know the Lord has great plans for me and this is part if his plan. He has made that clear to me.

Versatile Blogger Award

When I started this blog back in October, I never expected to be nominated for any awards. This blog was started purely as a way for me to help others in my situation and express my feelings about the hand that life has dealt me. But, lo and behold, I was nominated by EndoTough for the Versatile Blogger Award. The rules are simple, post 7 facts and nominate 15 blogs. So, here we go.

My 7 facts:

  1. I used to be an Irish Step Dancer
  2. I coach recreational and competitive gymnastics
  3. I am going to go pre-med at college next year
  4. I play piano
  5. I have a 20 lb dog who is amazing
  6. I absolutely love hunting and shooting
  7. I changed high schools right before my junior year

My 15 nominations:

  1. Jasmine’s Endometriosis Journey
  2. TruerThanTrue
  3. mychronicself7
  4. misskingni
  5. Endoblossom93
  6. relopez94
  7. Ellie
  8. livingwithadhesions
  9. Endometriosis and Me
  10. Yellow Endo Flower
  11. Endo Fighting Fit
  12. Women with Endometriosis
  13. Everyday Endo

Endo Resolutions

Hey y’all!! Merry Christmas and Happy New year!!

Sorry to have been MIA recently. Between cheer season starting and finals and the flu, life has been crazy. I am hoping to get back to blogging more often. If y’all want blogs about anything specific or y’all have questions, drop a comment and I will do my best to address it!
So with New Year’s coming up, I wanna share some resolution ideas. Often times people say they are going to hit the gym, lose weight, or something along those lines. Those resolutions can be hard to keep for anyone, but especially us Endosisters. How can I hit the gym when I can’t get out of bed? I can lose weight, but I’ll still look pregnant on my period. I compiled a list of 10 resolutions for us Endosisters that might just hopefully make our quality of life better.
In 2018…
1) I will cut out soy from my diet completely.
The human body processes soy as estrogen and estrogen causes Endo growth. Most Endosisters are already estrogen dominate which means soy is just adding to the issue.
2) I will gradually introduce the Endo Diet to my life.
I will pick one no no good group each month and cut it out until I am eating clean. Example: January cut out all gluten. February cut out all dairy on top of the gluten. Etc
3) I will do crunches every day that my pain is below a 5.
Crunches or an work in general strengthens the same muscles that tend to cause cramps. Strengthening them should make cramps more bearable because they aren’t being overworked and are used to the stimulation.
4) I will not feel bad about cancelling plans due to my Endo.
My health comes first. I’m sorry that I can’t always see my plans through but I promise everyone involved will have more fun if I don’t go when my pain levels are high. If someone has a problem with that, they aren’t the kinds of supportive friend I need. Cut them outta my life
5) I will explain to those around me what Endo is and how it affects my life.
People often don’t know what Endometriosis is. I will take every socially acceptable opportunity to educate those around me. This can be as simple as a very nongraphic dinner conversation or as elaborate as a full out presentation for a class project that includes pictures and videos.
6) I will not worry about the what ifs of this disease.
This disease often makes me worry about my future. What if I can’t have children? What if my future husband can’t handle the stress and strain of my disease? What if I can’t finish college? Guess what?? It’s in God’s hands and this disease will no longer control my worries!
7) I will participate in the Endometriosis Awareness Month social media campaigns.
More women need to know about Endo and I can help promote that knowledge through social media. It’s more than a bad period and people need to be educated. Maybe if people are educated we can start getting some real research done.
8) I will cut people who do not believe me about my Endo out of my life.
This disease is hard enough without people accusing you if lying. You think I’m faking? Bye. You think it’s just a period? Bye. I don’t need your negativity in my life.
9) I will try everything else for pain before turning to prescription pain pills.
Chronic illnesses can foster drug addiction and pill reliance as prescriptions are handed it liberally. I will do my best to not take my prescriptions to prevent any potential pill issues.
10) I will thrive!
I’m not going to just survive Endo. I will thrive. Endo will not get the best of me, nor will it control my life. It’s my life and I plan on living life to the fullest.

It’s More Than a Bad Period

How do you know if you have Endo?

** Disclaimer: I am not a medical professional… This is all based on my research and personal experiences**

Even before you hit puberty, some signs and symptoms of Endometriosis may show up. *TMI warning* Growing up, I was never really regular with my bathroom habits. It wasn’t until after my laparoscopy in 2012 that I found out most people use the bathroom daily without constipation or diarrhea. Also, I firmly believe that genetics plays a major role in Endo. I am one of many people in my family to have this awful disease. My mother, cousin, great-aunt, and paternal grandmother all have had surgeries where Endo was discovered.

As you hit puberty, other signs and symptoms may appear. Every woman is different, and your symptoms may not match this list or any list you find.

  1. Major cramping – Advil, Midol, Ibuprofen, etc don’t touch the pain you feel. Some women with Endo take prescription pain pills to help alleviate the pain.
  2. Bloating – I normally wear size 6 jeans. When I am on my period, or bloated due to my period, I can’t wear a size 8. I end up living in sweats and leggings.
  3. Acne – Hormonal acne is common with Endo due to the Estrogen dominance that is associated with Endo.
  4. Sleeplessness – Pain keeps me up at night at times. I take Melatonin to help me sleep when I can’t seem to get comfortable. I also wear a bite guard so I don’t grind my teeth from pain.
  5. Irregular periods – A 28ish day cycle is seen as normal. I am honestly not sure I have ever had a 28 day cycle or anything that is semi regular.
  6. Bleeding – Extremely heavy bleeding that lasts longer than normal. Mine is b=generally 7-9 days and regular tampons may last me about 3 hours.
  7. Infertility – This is common in late stage Endo patients. I really have no personal experience with it as I am too young to begin to go down that road.

Don’t let any doctor tell you that you are too young or that it is all in your head. You know your body better than anyone else. Your pain and your symptoms are valid.

The Spoon Theory

The reality of living with a chronic illness is beautifully laid out by Christine Miserandino on her site, www.butyoudontlooksick.com. She uses the illustration of a handful of spoons to demonstrate how a “spoonie” has to make daily decisions about what to do.

The reality of living with a chronic illness is beautifully laid out by Christine Miserandino on her site, www.butyoudontlooksick.com. She uses the illustration of a handful of spoons to demonstrate how a “spoonie” has to make daily decisions about what to do.

The Spoon Theory

by Christine Miserandino

www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said, “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case, Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons” because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time, I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me, it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them because they have one of my “spoons”.

© Christine Miserandino