Endometriosis: Not Your Mother's Disease

After I was diagnosed with Endo the response I got the most often was 

"But you're so young!" 

Yes, I was young. I was 20 when began noticing the severity of the disease, but found that symptoms really began around the time I was 14. After diagnosis I began searching for other women my age to read about their experiences, or to try and connect to someone else feeling how I felt. I maybe came across a handful of profiles of women under 27 that spoke about having Endometriosis and living with the disease. The reality was that very few women received diagnosis before the age of 32. 

So what happens when a 20 year old is told you have a hormonal imbalance that will change your life forever? What happens when you are told you might not be able to have children before the thought even enters your mind? What happens when you are told you have three years to try for children before  your chances drop dramatically, and you still don't even have a steady boyfriend? What happens when you have to go through chemical treatment while you are still just trying to finish school? What happens when your first time having sex hurts like you expected, but so does every time after. What happens when you trade student loan debt for medical bills? 

It's like listening to your life end before it even begins. It's like being a stranger to yourself in the years when everyone is telling you to find out who you are. 

 I am not just speaking about infertility, but about the entire package that comes with having Endo.

It's the surgeries, the medicines, the acupuncture, the diet, the bleeding, the boating, the crying, the weight, the headaches, and the emotions. 

This disease is no longer for the middle aged. It's hitting girls during their most fragile years and leaving them to face a lifetime of internal chaos. We start frantically planning for what we should do next. 

Do I freeze my eggs now?

What if the Endo comes back?

Do I do Lupron and go through menopause in my 20's?

Am I okay with a hysterectomy in my 30's?

Will early hysterectomy raise my risk of Ovarian Cancer when I am older?

How do I explain to my future husband about Endometriosis?

How much is IVF?

Does insurance cover any of this?

How will I maintain a job with my pain?

Do I explain my disease to my future employers?

So I have to avoid dairy, alcohol, gluten, and soy for the rest of my life?

It's all just... chaos.

You are left with so many questions. You are left sad and afraid of what this means next. You feel alone. You feel different and broken. It's no wonder so many women suffer from depression and anxiety. I learned while in treatment that the disease had been dubbed "The Invisible Illness".. it sounded like a horror movie, and well, it was.  When relief can't be found you lose hope it will ever get better. When one surgery follows the next you begin to think nothing will ever change. You only have questions never answers. 

So why is it that when I am doing most of my research the only answers I am getting are from other women suffering? I don't understand how still so much is unknown about this rampant disease. I don't understand why we are left to suffer until finally we break down and give away our insides. They can't even diagnose it without cutting into us. I don't understand how the term Endometriosis still goes unrecognized in conversations. I still don't understand why I am having to use a cancer screening test that I pay for out of pocket, because we don't have our own and insurance won't cover it.

1 in 10 women have Endometriosis in the US and we still don't have our own screening test. 

I just don't understand why are we not talking about this as soon as girls hit the age of menstruation. I complained for years, and still not one doctor asked me about Endometriosis being in my family. I even had one tell me I was just to young! Endometriosis doesn't have an age limit. I began this journey at 21 and I will face it for the rest of my life. I am writing this today because I am angry. I am angry and saddened at the phone calls I get from other women talking about the hopelessness and pain that they feel. While nobody ever told me life was fair, they never told me how painful it would be. So I want to talk about it. I want to talk about it a lot. I want to ask questions and give answers. I want to meet other women and I want to hear their stories. I want to figure out what comes next in the medical word for us.  I want to help in any way I can. I want to stop being passed around until I can meet a doctor who can carry a conversation about options, while understanding I am a human and being pumped full of hormones or being cut open every other year is just not working. 

Recently I found a website called http://www.myendometriosisteam.com 

It's like Facebook for women with Endometriosis. It has really helped me connect with women of ALL ages about having this disease. It's open and honest, and a very real look inside what living life is like and can lend some much needed support. You're not alone in this. There are others out there who do understand. Never be afraid to ask questions or to push for answers. 

Endometriosis is no longer my mothers disease, it's mine too.

Yellow Bird Visuals Photography 

Time for Teal: My Life with PCOS

Thank you.

Thank you, thank you, thank you.

I logged on the other for the first time in about 4 months last night and almost fell off the bed at the number of views my blogged has received. 

Thank you for caring enough to read my story. 

It's been a while since my last post, and while my first post seems like a lifetime ago, my life with PCOS and Endometriosis is still very present. 

In September I had some concerning symptoms return and I scheduled an ultra sound with my Gynecologist to make sure everything was ok. The ultra sound showed my ovaries had once again become riddled with cyst, like an "overloaded chocolate chip cookie"  the technician put it. Now, before you go preparing my hysterectomy get well kit and my pamphlet for entering menopause I also took a blood test.  This blood test is used for detecting cancer, yet it also has a handy side effect caused by one disease causing false positives...

DING DING DING! 

Endometriosis

My levels came back low, meaning the Endo in my body was still at bay from the lupron.  My big bad battle with Endo was still won, but all along I was a double threat. I once again have active PCOS. As soon as I started menstruating again my PCOS flared it's nasty head. At first I felt defeated, as though I spent all my time focusing all my energy on one disease just to have been taken down by another. I had done everything the doctors told me to. I had taken all the medicines they had given me. I had lost all the weight I could. I have eaten all the nuts and berries I could fit in my purse. I haven't had real milk, coffee, or red meat in a year and a half. I ran an hour a day, followed by yoga for another 30 min. I have enough vitamins and supplements on my counter to double as my own drug store. 

I wish I could tell you my story ended with me getting completly better and my diseases disappearing the second I got off the operating table, but it didn't. It just doesn't work like that. Being a fighter doesn't mean fighting only until you have won, it means getting back up when the hits don't stop. 

 It means continuing to live your life to the best of your ability. 

When you have Endo and PCOS you learn the art of adapting. You change your life to be able to live it as best you can, and it can be hard and heartbreaking. I would never wish hormonal issues on my worst enemy. It is easy to become to depressed and unresponsive. If someone came up to me and told me to just "tough it out" I would put my extra amount of testosterone to good use. It doesn't get easier for you after diagnosis, it just changes you. You have to make the decision on how you respond to it. 

It took me five months to clearly respond to this...

I did not have as much time being completely  PCOS free as I wanted. I am disappointed all of my life changes didn't mean absolute protection from ever feeling pain again. I am more aware of the severity of my conditions. I begin to look at a bigger spectrum of outcomes outside my one plan as now being possibilities. 

This doesn't mean I stop or give up just because it hasn't provided me what I wanted.  I am still Endo free until the test shows me differently. I am still able to have children until my doctor firmly tells me otherwise. My PCOS is still controlled until my ruptures return or life become unmanagable. 

I have to look at this from a day to day basis.

Today I didn't wake up with a cystic nodule.

Today I was able to work out for an hour without stopping from pain.

Today I am still at a healthy weight. 

Today I didn't have a cyst rupture.

Today I didn't bleed through anything.

Today I didn't have a clump of hair on my pillow.

Today I didn't have a nose bleed. 

I may not be where I thought I would be, but I am a hell of a lot farther than I was. I'll take it for now. I'll take today and leave tomorrow to be it's own.  I can only live my life adapting to what today brings, and that means steeling my heart to the things that may or may not come for me.

When it is time to laugh, I will laugh.

When it is time to celebrate, I will celebrate.

When it is time to feel, I will feel.

When it is time to scream, I will scream.

When it is time to mourn, I will mourn.

When it is time to fight, I will fight.

When it is time to be brave, I will be brave.

When it is time, I will. 

Live today to the best of your ability. Let go of the things you can't control or the questions you have unanswered for now. When the days come to face your fears and heartaches, face them with your heart and allow yourself to feel - but don't get pulled into that tempting darkness of hopelessness and defeat. Don't let your heart become consumed by your doubt that you will never have a life outside pain and heartaches. 

To have a life outside of having Endo and PCOS is difficult, you work at it everyday. You find a GOOD doctor who will listen, and that you RESPECT. This could also mean going to more than one. I have been to three doctors since my journey began. It's a relationship that like all other relationships needs an effort from BOTH sides. You have to talk honestly and openly to your doctor, as well as actually listen to them. You will need to have the courage to speak out against things you don't want to do or are not comfortable with. You have to understand that there are things you will have to do that plain suck. You can't eat a lot of foods. You will have to open your mind to taking birth control. You have to keep up with regular appointments and ultrasounds. You have to be as active as possible from day to day. On days you can run, run. On days you are in pain try your best to take some time to slowly stretching on the floor, or doing simple yoga poses to help relieve the cramps. Drink a lot of water. The topic of medications is a monster of it's own, but listen with an open mind and take time to think before saying yes, or no. 

Don't get discouraged when things don't feel like they are getting better. It will take time. Don't let negative stories or ignorant comments kill your passion to be better. They do not know your heart and they do not deserve your time. It will take a good fight and a strong heart. It will be scary, but you are braver than you know. 

Let's Give Them Something to Talk About

This is about to get awkward and maybe even a little uncomfortable, but perhaps it's time we all grow up a little. 

Vagina. 

Uterus. 

Ovary.  

Menstruation. 

Period.

Birth Control. 

 Fallopian Tubes.

Endometriosis.

We won't say the words. We won't say the word. It is a series of words that are uncomfortable and it can be embarrassing . I remember when I would have to miss class due to pain. I would almost instantly feel the dread of having to explain my absence to friends and teachers. I would sit and try to rephrase the fact that my ovaries had been twisting up inside my body because I had started my period and my cramps left me unable to walk. 

"I had a stomach ache."

"I was feeling under the weather"

"I got a stomach bug"

"Ok."

How do you explain having a stomach ache like clock work every month for 5 to 7 days leaving you suddenly MIA? 

How do you complain about the symptoms and listen to your friends offer suggestions of relief when in your mind you know the real answer...

Or worse, you don't, but you know you can't ask for help because, well, that would be an awkward conversation. 

Nobody wants to talk about periods. 

I remember working out and seeing a commercial for a pad that helps "protect the panties" and the woman beside me going "that is such an awkward commercial, I have to turn it if I am with other people."

Yeah, but find me one woman who hasn't had that problem before or at least thought to herself in that one heart stopping moment she might have bled through her clothes. The horror and humiliation that comes from simply sitting down a little to long. 

Heck, when you have Endo it's pretty much a guarantee. 

IT HAPPENS. 

We won't talk about that kind of stuff in public. Yeah, maybe you complain to your girlfriends about your cramps or ask to borrow a tampon cause you forgot, but when is the last time you sat down and had a serious conversation with someone about having severe pain and cramping during your period. It just doesn't happen.

Why does Endometriosis have such a high infertility rate? Because the average age we catch it at is 32, the time we begin trying for children. 

We don't know about it because we don't hear about it. 

We don't talk about it. We don't learn about it. 

For some the silence steals away the ability for them to have children. 

More than 5 Million Women in the US ALONE have been diagnosed Endometriosis.  

In 2011 a study conducted by the Eunice Kennedy Shriver National Institute of Child Health and Human Development had a group of 652 randomly selected women  undergo a Lapro to look at their reproductive organs for signs of Endo, of that group 11% were diagnosed without having any showing symptoms of the disease. This just goes to show how much higher this 5 million is more likely to be.

Since Endometriosis cannot be seen in an Ultrasound or MRI it is difficult to diagnose or even know you have it without symptoms.

What is important to look at is family history, Endometriosis is hereditary. My mother had it and so did other female family members. Look at your mom, aunts, grandmothers, cousins, even great grandmothers. Do your research on family history, and don't just look for the magical "endometriosis" to be printed on paper for you to be sure. You need to look at fertility problems and reasons for hysterectomies.

As women with Endometriosis we need to talk about it. I am so passionate about informing all my female relatives and friends about my disease. I even put on an art show at my college about it and opened it to the public for everyone to come see photographs of me in my most vulnerable. I wrote about it online, I posted about it on Facebook, I even shared photos leading up to surgery. Why? Because since then I have had 17 women reach out to me wanting to talk back. I have had women ask me about symptoms, share with me their stories of pain. I have had women who have been diagnosed recently sharing with me their fear. I have had women ask me about my procedure and what to expect. 

Because I want to open a door to make it okay to talk about it. 

Because when someone ask "What happened?" or "Why are you in the hospital?" 

I want it to be okay to say "Because I have Endometriosis." 

"Because I had to have an ovary removed because of Endometriosis"

Knowing our body gives us power and avoiding topics because we are embarrassed or it awkward leaves us vulnerable. 

Start the conversation and watch what happens. 

This needs to be a bigger issue. We can televise 10 Viagra commercials during one football game sitting next to our dads or sing a song about someone's "Anaconda", but we can't say "ovaries" and we can't say "uterus" without a shush or a joke to follow. 

Well those ovaries and that uterus gave us mankind.

I'm not making this a feminist issue, I'm making this a maturity issue. We need to stop thinking of these things as "gross girly parts" or the reason for "shark week" and begin to see them as vital organs to reproduction. Hormones conduct our entire body. Not only that, but Endometriosis can attach to more than just your reproductive organs. I had it on my stomach, appendix, bowls and abdomen. 

When we become aware of Endometriosis we will better understand it. We will better be able to detect it and we may even begin to find a cure. 

Don't be afraid to share your story. There is always someone out there who is thankful to be listening, trust me. 

And if you do worry about having Endometriosis or want to know about the symptoms, but know that those around you cannot provide that type of platform for conversation never be afraid to seek or reach out to those who could. Never let the conversation end because nobody will listen. 

To end this post I would like to say I would never ask any woman to force herself to share with others what she didn't feel comfortable with about her own personal story. I understand that what comes with Endometriosis can be mentally, physically and emotionally daunting. The details of your story is your choice to decided what to keep private. You don't need to share the details of your own story to share the topic of Endometriosis, the awareness of Endometriosis itself could take us miles. We cannot be afraid of talking about Endometriosis. 

You are no less a woman. You are no less a person. You are not weak. You are not crazy. You are not different. You are not broken.

You are strong. You are brave. You are a fighter.

 Let them hear you roar. 

Living in Yellow

Tomorrow with be one year since my surgery and the diagnosis of my stage 3 Endometriosis and PCOS. A year of changes and a year of growing acceptance. I have come to realize I will never be able to pretend I do not have Endometriosis, no matter how much better I feel. I have not had one cramp, nose bleed, episode of nausea, pain, back seize, or cystic nodule since my surgery. Nothing. In this time I have had days that I almost forget. I almost see myself never having to say the word again or explaining why I can't go somewhere or have to miss work. I see myself living a life without Endo being inside me.

   Then I see those two little scars on my pelvis, and I remember again. 

I will always have Endometriosis. I will always have those scars. I will always have hormonal issues to face as I get older and as I begin to enter a time where having children begins to cross my mind. I will always be fighting, that is the role I have been given - the fighter. The truth is, I cannot forget about my disease. I cannot pretend it doesn't exist. I cannot imagine I am all cured. I cannot ignore the fact I ever was sick. I have Endometriosis. I have gone through stages of being  a 23 year old and having a hormonal imbalance that throws the body and mind into chaos. I was scared, angry, depressed, and finally - acceptant. I have now realized I lived 12 years of my life with a pain I thought every woman felt. I avoided things that I now regret missing as I grew up. Sports, sleepovers, bike riding, pool parties, borrowing friends clothes, even sitting at my desk at school for long periods of time left me with a fear of embarrassing stains, sudden pains, or having to stop to go to the bathroom every 30 min (yes, every 30 min). I always felt like I couldn't trust my body to behave. I missed things because I didn't know what would happen. I declined things because I convinced myself it didn't bother me to miss them. I pretended it was just my personality. I would say I was not a "social person" or a "home-body". I ignored the stabbing pains and the mood swings. I ignored the sadness I felt at being left out of deeper relationships with people because I was to embarrassed or ashamed. I would pretend I didn't have Endometriosis. It got worse every year until my body erupted and I could no longer ignore it. This is what I have to remember when I begin to feel I can just pretend I don't have Endometriosis anymore. That I can convince myself that I can go on like I never had it at all. It's there. What I have learned is that I can help my body in it's ability to fend for itself when symptoms arise. I can help my mind be able to fend off negative thoughts when things got hard. I could surround myself with people who provided encouragement instead of pushing them away.  I exercise. I eat my veggies. I pray. I engage myself. I talk to my doctor about new signs or problems. I take my medicines. I stay off message boards due to my tendency to become a hypochondriac, or spend time researching the scary things about my disease.  I look at my body everyday and I tell myself how much I love it, not because of my waist size or my breast or what it's physical appearance can do for me, but because it has been through so much and still doesn't give up. It pushes. Together my body and I fight my disease. I provide it with good food, love, and time everyday dedicated to strengthening itself and it gives back the ability to run for miles, lift over my own my body weight, and walk miles uphill without become tired. It has been through ruptures, years of pain, overweight pounds to carry, a diet of 99% fast food and sodas, then bad dieting habits, over exercise, starvation, surgery, more starvation, then menopause. Yet... in the end, it forgave me. As soon as I began to love my body, it loved me back. I don't mean that exercising made everything better, its bigger than that. Exercising was only a part of it, but loving my body was what changed everything. I began to exercise to strengthen my body, not to eliminate the calories from the bowl of yogurt I had for lunch or lose weight. I began to exercise because I loved my body and I didn't want it to have to go through that pain and weakness again. I want to protect it. Then, I changed the way I ate to accommodate the way I exercised. I was lifting heavy things so I needed heavier foods. I re-introduced almond butter, bananas, turkey, chicken, potatoes, eggs, spinach, bread, rice, protein shakes, oatmeal!

This is when things got hard.

You see for the past year my mind-set was on losing weight or  keeping it off. I was 120lbs and 17% body fat. I wasn't skinny, I was tiny. I was able to be that tiny for a year because of my constant calorie counting and monitoring with my scale. I can still remember the moment I realized I had made a hollow goal for myself. I was in a popular apparel store and I was trying on pants and I went to slip on my normal size only to realize that they sat to large, I needed the next size down - 0. I pulled them on and buttoned the top, perfect fit. I bought the pants and drove home ready for my life of utter happiness and perfection to begin. I was hit with the stunning reality that those pants brought me nothing. They didn't change anything. My life was the same, I was just living it smaller. Worse, my body was beginning to fight back. I looked disproportionate, my hair thinned, I poked people with my bones when I gave them hugs. I was tired and crabby most of the time, I was hungry all of the time. I saw that being thin didn't magically turn my life or my own vision of myself into something perfect. I felt uncomfortable in my body and unaware of how to handle my new size. I had no curves, no breast, no butt, and no hips. I lost my shape. I knew the answer was to put back on some weight, but my mind just didn't seem to think this was an option. How do I go against everything I had just fought so hard for this entire year? I was utterly afraid to begin eating more, but I was so unhappy I knew I could not maintain this lifestyle. I was tired and mean and weak and unhappy. I was destroying relationships and I was destroying my body. I was forcing myself to relive the same pain I had felt before losing weight, only this time it was my own mindset that was the disease. I would spend nights crying and then going out and eating as much as possible until I became sick. I would do this every couple of days. My fiancé, who begged me to change my eating habits and just gain weight then offered me another solution to gaining weight. When I was cleared to do so safely by my doctor I would began working out with him. He told me he wanted me off the treadmill everyday and to start lifting some weights, nothing big, just some hand weights. I agreed, and together we walked to the large dumpster outside my dorm and threw away my scale.

                                                         

It has been two months and it was the BEST decision I ever made.

I fought hard. I cried. I binged. I cried. I lifted. I binged. I restricted. I got caught. I lifted. I binged, I cried. I lifted. I overate. I biked. I ate. I lifted. I ate. I ran. I ate. I gained 20lbs without adding more than an inch to my waist.

Together we sat down and made a workout plan for us to begin to build muscle and strengthen ourselves. We pushed each other in the gym and we encouraged each other. We became each others biggest cheerleaders and competition in the gym. I learned to be able to listen to his directions and corrections and put down my pride long enough to ask questions or ask for him to show me the proper form. We began boasting about the things the other one could do better in the gym. I can run for miles without stopping, and he can lift bigger and heavier things. Even his nickname for me, "Fish", comes from my ability to swim and tread water for a long time. We made meals together and we got healthy together. Soon, my legs got thicker, my butt returned, my shoulders wider and my arms more defined. I was getting strong. I looked in the mirror and my heart soared. I loved how I looked and I loved how I felt. I had put back on twenty pounds, half of what I lost and the world didn't end. I cried, but the world didn't end.

Everyday isn't a walk in the park. 5:30 workouts suck and that moment between my alarm going off and my feet hitting the floor I am 89% sure I'll just skip or go later. Then I think about that waffle I get if I just put my feet on the floor and the waffles win, just kidding. You see... sitting beside my bed is my ID bracelet, the one I had to wear for a month in case something happened and I had to be rushed to the hospital. It has all my information on it and a code that would inform doctors of all my updated medical information. I look at my bracelet and I tell myself to remember why I do this. Remember you have Endometriosis and PCOS, and fight it. Work it for the ladies who can't. Work it for those who will always live their life in pain. Work it for those who are on their 8th or 9th surgery. Work it for those who didn't get a second chance at being pain free, even if it's only temporary. I hate how my legs look in spandex, my thighs touch together when I do my warm up run, my armpit skin piles on top of my sports bra strap and I am still bloating and retaining water from eating normally again. This is the body of a fighter. When I get to the gym an entirely new mindset begins and I place my headphones in and let my body take the lead. It's just me. Before I know it my workout is over and I am walking out soaked and smelling like an armpit and the happiness I feel is the happiness I dreamed of all along. I don't want to be a bodybuilder, I don't need six pack abs, I don't need competitions, and most of all I don't need approval from anyone. I have Endometriosis and I am kicking butt everyday. I went from not being able to walk to being able to lift 405 pounds with my legs, running 4 miles straight, and keeping up with the boys. I cannot forget my real battle. I cannot forget my disease. I cannot let myself become weak. I am the fighter. My body is amazing and I don't need a pant size to verify that. I am healthy, I am pain free, I am strong, and most of all..


                                                                        I am happy.

A Look Back On the Year I Wore Yellow

2013: The Year I Wore Yellow

Now you have a little more background information of Endometriosis and PCOS (read/skim the first post)  I can tell you my personal story with a little more understanding of my disease. This story isn't a weight loss story. This isn't a how to cure your endo/pcos how - to guide. This isn't an advocacy blog for any medication, treatment, or diet. It is simply my story.

Part One: Ovarian Cyst Rupture

I was 21 and in my sophomore year of college was when I first experienced signs of having something wrong with my body. I had never experienced any significant issues before other than the typical female complaints of breakouts and bloating. During a morning class I reached down from my seat to get a pencil from my backpack and experienced a sharp pain in my lower abdomen that went from a stabbing sensation into an immense pressure followed by nausea. I was able to walk back to my apartment on campus, but I was drenched in sweat and burning up when I reached the door. I took off my wet clothing and wrapped a towel around myself laying on the floor waiting to become sick. I don't know how long I was in the floor, but my roommate returned from class and found me in the bathroom and took me to the emergency room. Together, we sat in that waiting room as I clutched a pink plastic bucket the hospital nurses provided and focused my eyes on the small television playing Anaconda full volume. The nurse finally called me back collecting my information and blood sample. By the time the nurse was able to see me it had been two hours since the stabbing pain started. My stomach had become so swollen and enlarged I had to unbutton the top of my jeans to sit. My abdomen also made a sloshing sound as I moved as though I had chugged a gallon of water in the waiting room. My stomach hurt to the touch and my lower back was now in pain, making it difficult to walk standing straight. I was short of breath and patience.

When the doctor finally came in to see me his long fingers pushed the side of my swollen abdomen causing me to become sick instantly, I was sent for a CT scan as soon as I lifted my head from the trash can. Darren, the young man who wheeled me to the CT scan was sent to make my journey easier that day. I had sent my roommate back to school earlier so she wouldn't miss class and practice and my boyfriend had to leave for a short period of time due to a lab exam, I was alone. Darren came in with the biggest smile on his face and told me he would be running my CT. As we waiting for the CT room to clear he told me stories of his younger brothers and his own visits to the CT machine for high school football injuries. He informed me the dye in the shot he had to inject me with would make the whites of my eyes glow in a dark room so we laughed as we devised a plan to wheel me back into my little room after the CT scan and shut the lights off to freak out my boyfriend with my glowing eyes. Unfortunately, our evil plan never was put into action. I became violently sick in the CT scanner and had to retake several of the scans. By the end I was exhausted, dehydrated and had the hiccups from crying. I was slowly wheeled back to my room where my boyfriend and mom now waited for me. Darren left and returned with 4 cans of sprite and a pack of peanut butter crackers. We all waited.

The doctors told me I had experienced an ovarian cyst rupture on my left ovary. I had never heard of an ovarian cyst and did not know what it meant. They informed me it was actually common for women to experience ruptures and would only be an issue if it occurred frequently. I was given strong pain meds and sent home to recover and let the swelling go down, that was all they could do for me. It took 3 days for my swollen stomach to return to normal size. 

Part Two: PCOS Diagnosis

I went 5 months without having another rupture, but I was experiencing severe changes to my body. Two months after my rupture I began to get large red sores on the sides of my cheeks and forehead. These sores varied from the size of a penny to a half dollar and felt hard to the touch. I tried every topical medicine the stores offered, they would not go down. Worse, I would poke at them until they bled leaving me with scratches and marks all over my face. Make-up made the redness worse and burned and so I was left to go out all natural and humiliated. I was also experiencing slow, but steady weight gain. It was not very noticeable at first, but began to collect and sit awkwardly on my thighs and long arms. I went to the dermatologist about my face and was told I have severe cystic acne nodules that usually derive from having to much testosterone being produced in your system (aka. hormone imbalances). I was recommended treatment with Accutane, but I was already familiar with the drug and made the decision to pass on it due to many risk factors I was not willing to take. My doctor then turned to another drug called Bactrim that is used in cases of severe MRSA. Though this drug was still strong and would need to be monitored with frequent kidney checks I trusted my dermatologist who felt confident it was safe for a short period of time. I was on Bactrim for one month then transitioned into Minocycline for three. My sores disappeared before the next school semester. I still make regular visits to the dermatologist, but have been off any acne medication for a year other than a compound face wash he makes for my skin.

The weight gain was still occurring and had become more noticeable in contrast to my high school body in pictures. I was never stick skinny, but maintained an average body size for my 5'7 height. I was active with friends and rode horses so I was never overly self conscious about how I looked. I had accumulated about 15 pounds of extra weight on my frame, but I still wasn't to concerned. 

This is the part of my story that I need to be honest about what else also triggered my weight fluctuation despite my preference to simply blame hormones. During this period of time I was becoming more moody and depressed with situations that would not have normally triggered such an emotional reaction from me. I was always agitated and extremely tired and so I found it easier to make a quick Taco Bell or Krystal run than to go to the cafeteria or grocery store. I would go all day with classes and work not stopping to eat or  grab a snack and then at night around 9pm I would load into the car with my boyfriend and eat with a stress releasing abandonment that calmed my agitation from the day. I lived off a diet of Waffle House, Sweet Bites and the Burrito Supreme with extra sour cream. It wasn't until my doctors visit when I heard the words "overweight" and "BMI" that I was forced to stop my late night food therapy sessions.

Unfortunately, my cyst ruptures returned the first half of my junior year and by December I had experienced 4 ruptures within two months and I was back at the doctors feeling worse than ever. I was emotional, exhausted, and just felt heavy in every way. I was missing classes due to constant pain and I was slowly becoming more withdrawn from friends and any type of social settings. I was always angry and had no energy to even get dressed in the mornings. My boyfriend took the brunt of my anger or emotional outbreaks due to the fact he was the only one who knew how bad my pain actually was. He still to this day has never once yelled back or become angry at my behaviors, however irrational they became. My doctors appointment went like normal with the collections of vitals and blood and the dreaded moment of stepping on the scale. I sat in the office as she walked in with my chart in her hand. 

"You are showing levels of having hormonal imbalances and the symptoms you are describing are pointing to having Polycystic Ovarian Syndrome"

She went on to give me the basics of PCOS (see blog post one for more details) and informed me that my symptoms had become more aggressive due to my increase in weight. She said according to the BMI chart that hung on the wall I was in the overweight category (I was 25.4 on BMI)  and losing that weight was going to be detrimental to getting better. I was prescribed a medicine called Metformin to help me with the weight loss and my overall metabolic breakdown process. This was my first experience with medication and I was so worried the ruptures would continue I didn't ask questions. Along with Metformin I was told to lower my caloric intake to 1200 calories daily and limited to only eat foods listed on the American Diabetes Association website. Looking back I can see underlying message of the plan. Only after my further understanding of PCOS and Endometriosis did I learn that body fat does contribute to difficulty in regulating hormones and can make symptoms more difficult to get under control. If I could redo anything from this entire experience it would be that I had the knowledge then that being skinny and being healthy was two different things. I saw my relief and answer as being achieved by a low number on the scale, I ended up being completely wrong. After the doctors visit I was so humiliated at being dubbed overweight and having to confront my bad eating patterns had become a problem.  Since I did not have much knowledge on nutrition I relied on counting calories instead, 1200 was that magic number. I worked out everyday and within a month and a half had lost 10lbs. The metformin seemed like a magic to me and I was so proud when I stepped on the scale in the doctors office following my weight loss.

"You need to lose more."

I was doubled the dose of Metformin and moved to a 1100 calorie diet with exercise included. I even have the doctors summary report to prove it, my family was stunned. I was a hormonal woman on a mission. I worked out twice a day and watched my food. No bread, rice, sugar, caffeine, red meats, pasta, sodium, gluten, or oils made their way onto my plate. No salad dressings, mustard, ketchup, mayo, oils, butter, or even peanut butter or jellies.  I had the options of certain fruits, veggies, chicken, and fish up to 1100 calories. Sugar free dark chocolate pudding was my treat twice a week. I lost 12 more pounds. The ruptures never stopped during this time period. I would have a rupture, give myself two days and be back in the gym "curing" myself. The only thing changing was the scale. After being on the medicine for about 3 months I was experiencing frequent severe nose bleeds, intense lower back pain, constant violent nausea and fatigue. When I finally came home for the summer I had lost 32lbs and was exhausted and in constant pain. I experienced ruptures monthly and was not able to hold certain foods down. I was sent to another doctor who would look past the focus of my weight solely and begin looking at a deeper underlying cause.

Part Three: The Mass

 As soon as I saw the new doctor I was scheduled for an ultrasound two days later. It would be the first time I had an ultrasound performed. When I told him of all my symptoms and pains he took me off Metformin and told me to stop all vigorous exercise until we had further investigated my issue. He said I could walk daily for a maximum of an hour and to avoid high amounts of whole dairy, caffine and red meats, along with watching my gluten intake. I went back for an internal ultrasound two days later and cried my way through the entire experience. The nurse was kind, but I could tell she had seen something that caught her off guard. As office policy states she could not tell me anything until my doctor had looked over the results. I went home sore and scared waiting for the phone to ring. The next day my doctors assistant called me and informed me the ultrasound showed a very large mass on my left ovary and that I needed to come to meet with my doctor as soon as possible. It was a horrible phone call to receive. The word mass echoed over and over again and I feared for the diagnosis we all seem to see as inevitable when we are found with ovarian masses, ovarian cancer. I was to limit all movement and try to stay as immobile as possible as to not cause the mass to rupture or contort tearing my ovary. After hanging up I screamed, cried, rambled, researched, and cried some more. I could see my dad and my boyfriend suffer for me as they let me struggle in my own way. I am an anxious person. I worry and I fret and I try to find an answer to everything within three minutes of being told the problem. Simply put, I obsess. I researched all night and day and poured over any information I could find. Nothing put my mind to rest and the internet only made things worse as I read of the poor women who suffered through immense pain into their fifties awaiting the anticipated relief of menopause. I read the stories of the women lost to ovarian cancer and I read the stories of the women who had lost their ability to become a mother from various diseases. I cried. When I saw my doctor I was given a list of possibilities and though the list was long their outcome was all the same - removal and diagnosis through laparoscopic surgery. I was sent to speak to a surgical doctor who would take my case from there.

As the summer passed I began to dwindle more and more physically from the emotional toll and stress. I was down to a very low weight and my hair was falling out from stress. I was tired and covered in bruises from needles. I had constant back pain that glued me to a heating pad in the middle of summer. I would lay on the pad full blast until my skin would become deep red and begin to swell up. My father and I would make the 45 min trip to my doctors up to twice a week for MRI's and more ultrasounds, blood work and plans for surgery. Finally, I was given my surgery date and sent home to wait.

During my wait I was saddened at the realization that my now tiny body did not in fact cure my problems. I felt lied to and stupid for the hours poured at the gym for the realization that my determination to become skinny did not in fact lead to me becoming suddenly better or even happier. I was uncomfortable in my own body, a problem that I never had before I lost weight. I was unfamiliar with my new body and I had lost my curves making me feel more childish and frail. I tried focusing on the positive. I was 22 years old, in college and recently engaged. I tried to distract myself with bridal magazines and Say Yes to The Dress marathons, but my mind was on the outcome of the surgery and what this would mean for my life. What if it was cancer? Would I die? What if it wasn't? Would I have children? Will this be what my life is like forever? 

My surgery was at 6:30 am. When I came out of the OR my entire family was beside me. I was informed that the procedure went well, but there was some further work that had to be done upon the discovery of severe Endometriosis found in my body. My appendix was badly infected and was covered in adhesions so an emergency appendectomy was performed. Endometriosis was found on my abdomen walls, bowels, and my ovary mass was a determined to be full of Endometriosis tissue. Then the most amazing thing happened, I was told none of my reproductive organs had been compromised. The Endometriosis had grown in an irregular pattern familiar to doctors and left my organs clean and functioning. I also showed signs of PCOS. I had scars and build up on my ovaries from multiple ruptures that had occurred throughout the years. A full clean up was done of my ovaries and uterus and my organs had been surgically "reset" so that my cycles would start all over again like in the beginning of puberty. I was told due to the formation growth I was still able to have children, but my timeframe was not as long as women without endometriosis and there was a chance I still might need treatments to help for when I was ready to start trying. Photographs of the entire surgery came provided to the excitement of my surgeon.

I had the causes. 

I was so excited to finally have answers I did not have time to think of the Endometriosis immediately. I went home for recovery and slowly accept my new life with Endo. Recovery was difficult for the following two weeks after surgery. My stomach was filled with gas to give room for the instruments and camera for the surgery and trying to rid myself of the gas was very painful. It hurt to move and it was nearly impossible to use the restroom without assistance. My dad would wake me up periodically to walk slow laps around the living room holding his hands for support to help relieve the pressure built up in my lower body. I would cry and complain as I moved until I was allowed to go back to bed. I slept for most of the weeks after and the medicine made it difficult for much interaction with visitors. I couldn't eat anything but organic strawberry popsicles (my favorite) and more chocolate pudding which just led to further weight loss. I looked so small and fragile, but I felt better than I had in a long time. Doctors had agreed my back pain was due to my appendix being slightly adhered to the side of my abdomen wall and this also was the cause of not being able to hold down certain foods. My body could not process them correctly, even to this day my body will still reject certain foods (most of them coming from the greasy or fried category). Perhaps what scared me the most was the fact that the doctors believed due to the size of the mass that it had been in my body for up to a year or maybe even more. I had been exercising and running with it inside my body, a ticking time bomb. They said had it contorted or pulled away from my ovary I would have most likely lost the ovary or had internal bleeding. I was angry. I had been to the first doctor 4 different times before going and having an ultrasound. I had been seeing my first doctor a year before with complaints, there was never an ultrasound, internal pelvic exam, or MRI performed. This is why I encourage that if you feel like something is wrong, push. If it takes six different doctors to get test performed, push. If you are turned away six different times without answers, push. 

You should never have to live in pain. 

By week 4 I was back on my feet and eating regularly again, I felt incredible. My friends and family told me I looked better and I was regaining my energy level from way back in high school. I had minimal pain that mostly came from post surgery causes. My back wasn't giving me any signs of problems and I was walking around for as long as my dad would allow before I needed to rest. I was use to working out all the time out of habit and my energy level was through the roof. For those weeks after surgery I was off all medications, it was as if my body was able to regenerate. This medicine free bliss did not last long though, I was mass free, but I still had Endometriosis to face. I was formally diagnosed with stage 3 Endometriosis and PCOS. The way my Endometriosis formed and due to finding it an an earlier age it had not yet made its way deep into my tissue. My doctor described it as a thin layering, but it covered most of the tissue in had reached. Because the Endometriosis was able to form a mass of that size and thickness I was automatically given the label of a severe case - Stage 3.  My doctor, who I respected and trusted told me I needed aggressive treatment through a controversial medicine by the name of Lupron. 

"Do not read the stories on the internet about this medicine, I know you will, but please for your sanity, don't." 

My doctor repeated this again and again. She informed me it was my choice to accept the medicine, but that this would one of the few options for relief and help in prolonging fertility. She looked me in the eyes and told me she knew I would make the right choice. As soon as I got home I jumped on the internet and began researching the medicine. Lupron Depot is a drug that would be injected into my stomach twice in a span of six months. The medicine would suppress my Pituitary Gland from producing Estrogen and by doing this stop the Endometriosis from spreading or more from developing. Endometriosis is driven by Estrogen. The Lupron shot would give my body time to heal after surgery, shrink my current endo spots, and give me a time period where my body was not suffering from Endometriosis pain. I read that some women did not see their Endometriosis return for up to six years after Lupron treatment. This is an incredible thought. Sadly, I would be going through chemically induced menopause at 22 years old. Potential side effects included hot flashes, night sweats, weight gain, moodiness, thicker hair growth on arms and face, forgetfulness, lower levels of skin elasticity, and acne. I read stories on the internet of women reporting their period never returned after Lupron. I read of the medicine causing osteoporosis, lupus, mental breakdowns, and up to 60lbs of weight gain in a month. I read it caused anxiety, paranoia, depression, suicidal thoughts, and divorces. 
What do I do? I didn't know if I could handle this medicine, but I didn't know if I could afford not to accept it. The pain I had felt in the last two years is something I will never be able to fully explain to anyone. My words will never be able to equivocate the experience and I am not sure I would ever want to try. Mentally, physically and emotionally I was pushed to the point of insanity. In my worse years of Endometriosis and PCOS I wasn't living, I was just making it to the end of the day. I was not in control of my body or mind and I had destroyed relationships that I am still mending. I was trapped in a body that was trying to destroy me and I began to return the hate for it. I was angry at myself. I just remember telling my roommate again and again "This isn't me, I am not this person". I felt the sympathy from others, but I also felt the heaviness I laid upon them. I would consume those around me and invite them to share in my suffering. I would unload until most broke under the immense weight of what I had become. I now have come to realize that I was not the only one suffering from the Endometriosis and PCOS. 
This is why in the end I accepted the Lupron treatment. It was my own personal choice to take Lupron and I was fully aware of the gravity of my choice. I trusted my doctors and I had an overwhelming support system in my home. It would not be easy, but nothing in the last few years had been. I would receive my first injection weeks before the beginning of my senior year in college. 

The first three months I was on Lupron was challenging, but not impossible to manage. I did not show signs of any physical side effects, but the mental side effects began showing around month two. I began having moments of forgetting little things, like my car keys in the house or my phone in the car. It was times when I could not really decide if it was the Lupron or simply my own forgetfulness. I noticed the forgetfulness become more frequent followed by sudden and intense agitation. My patience was becoming non existent and I was quick to become short or annoyed with people. I was often grumpy and tired, but I could usually manage the day. Despite what I had read on the internet I was able to perform well in school and maintain working part time at my office job. In the middle of first semester it was already time for my second injection. 
It hit me like a baseball bat to the face. I was exhausted and moody all the time. I was short tempered and would lash out, saying things that I would never had said to a person before the Lupron. It would take everything in me to make it to class and work and back to my room. I wasn't depressed, I was just constantly tired or anxious. My joints would ache at night and I experienced hot flashes that left me covered in sweat at work or in class. When I first returned to campus I began walking every night to help my body build back it's strength and help with my anxiety. This second injection put a stop to my walks due to my knees and hips hurting and my anxiety of having to see people. I hated seeing people. I felt like they all stared at me or had wondered what was wrong with me. I looked like a completely different person. I would have panic attacks because I could feel the eyes on me. I would stare at the ground walking because I thought everyone assumed I was a freak or knew I had something wrong with me. I was afraid that I would say something I didn't mean to someone because of my medicine. I was afraid people would ask about my summer or how I lost my weight, or how I was feeling. It is hard to explain Endometriosis without causing people to feel a level of awkwardness or be uncomforted at the subject of ovaries and uteruses. My medicine had exacerbated the one aspect of my personality I tried so hard to fight since everything began, my self confidence. I had grown so uncomfortable in my own body that I was scared that others only judged me. The truth was, looking back - they weren't. 

In the end I personally didn't gain 80 lbs, didn't grow a beard and I never contracted Lupus or any other disease. All my hair didn't fall out and I didn't have a suicidal break down, though I did have my fair share of  general breakdowns. It was the hardest six months of my life, but it was not worst. I never regret accepting Lupron. The hardest days on Lupron never amounted to my best days with Endometriosis. Lupron pushed me and my family. It was hard. I never took Add Back Therapy at the recommendation of my doctor, though it was available at my request. I took Lupron full on and I came out the other side. I made A's and B's in school on Lupron and I only missed a total of 4 days at work(mainly for doctors visits). I graduate from college May 10th, 2014 and I become a wife on October 11th, 2014.

On February 26, 2014, one month off Lupron, my ultrasounds and blood work came back showing NO signs of active Endometriosis or PCOS anywhere in my body. I have not had a rupture or pain since June of 2013. I am mass free and healthy once again. My hormone levels are normal and my blood pressure is great. I exercise daily and walk everywhere around campus to help reverse some of the effects of the Lupron. I am stronger everyday. I maintain eating off the guidelines of the ADA, but I changed to higher amounts to accommodate my activity level. I never imagined I could ever feel like this. I haven't felt this strong and healthy since I was a kid. I have energy and mobility that I can hardly contain some days. 

It can get better. 

Endometriosis and PCOS differs in women, but my case is one of triumph. My story is one of  final relief. I don't know when my Endometriosis or PCOS will show up again, I don't give it much thought to be honest. I live everyday taking full advantage of how I feel right now. I also return to my doctor every 6 months to monitor my body through ultrasounds and physicals. I am active on every aspect of my disease. I will  keep fighting until I cannot fight anymore.

I am still recovering from different aspects of being sick. My hips and knees still hurt some days, but mainly I am working on rebuilding my confidence and relationships. I have a ways to go, but I have come so far. 

Keep Fighting.