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.
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