Meet Morgan...

Among many chronic illnesses, Morgan shares a chronic pelvic pain disorder, know as Endometriosis, that ties us together, creating the second square of the 'quilt' known as 'The Pelvic Pain Heard Around the World,' series.

So without further adieu this is her story and we thank you for sharing her encouraging words with us all. It is stories like this that helps others in similar situations put on a brave face for they know they're not alone in the face of 'Endo.'

"Be Careful What You Wish For"

Over time I have been fortunate to connect with a lot of people who share medical similarities to my own; these "acquaintances" have become my dear friends who share with me the burden of a chronic illness. While they have recounted their stories to me, I have noticed a trend: most of us have a "before" and "after." For some, the "before" is prior to the onset of symptoms, for others the "before" denotes life in anticipation of a diagnosis. Whichever it is, most of us think of life, and our disease, by these terms. "Before I was sick... abc...." or "since diagnosis....xyz." My story is a little different.

I never had the luxury, if you will, of a 'before.' My body has waged a civil war since day one, it just took me a long time to figure out who was fighting. To my knowledge, most wars* fizzle out before long; heck, the united states never fought in a war that lasted two decades, those wise guys. I'm going on twenty-four years and still fighting strong, at least I'm setting some kind of record (sense the sarcasm?). I suppose, however, that I got what I asked for. What on earth does she mean? Who would ask for a debilitating disease? Simmer down and let me explain.

At the sagacious age of ten years, I did a school report on Helen Keller; what a woman, let me tell you! I was so inspired by her life's accomplishments, despite the fact that she was both deaf and blind that I aspired to be just like her when I grew up. Now, I realize there is no self-preserving way to become deaf and blind, but you get the idea. I thought that these obstacles [deafness/blindness] would serve as an incredible challenge in life and what greater way to change the world than to do so with less than others have. I wanted to make a difference, but I saw that to do so, we need a little push. Obviously, at the age of ten, my life was just not challenging enough, go figure, so I hoped that life would push and challenge me in a way that would make me "great," just like Helen Keller. Dear Ten-Year-Old-Morgan, be careful what you wish for.  

I have suffered from a 'bad tummy' my entire life, and I have the record for school tardies and absences to prove it! However, it wasn't until my early teens that my strength was really tested. Let's flash back: It was a warm summer night, I was a fourteen-and-a-half-year-old teeny-bopper wasting her summer days away like any unassuming teen does, without a responsible care in the world. Then, it hit me, hard! My stomach turned in knots, my intestines went into over drive, my lower back ached, my head throbbed, and I could feel my dinner looking for an encore. I was sweating out of every pore of my body. Hours of pain and sickness plagued me. Whoa. Let's never do that again. The next morning I woke up to the beginning of my first menstrual cycle. Misery trumped teenage awkwardness. Were they all going to be like this? Will I feel like I have the flu and food poisoning every time? Of course, these were questions I kept to myself. I was so shy and timid I couldn't possibly talk about my p****d, it was a forbidden and uncomfortable topic. So, naturally, I white knuckled the pain and discomfort until it was over. I was used to an irritable bowel and terrible tummy, so I didn't think otherwise. 

For years my symptoms continued to cycle through and intensify with new ones joining the ring along the way. By the time I reached college, regular class attendance was more of a struggle than ever. Forget about going anywhere the week before and during my period. No way, Jose! There were little ninjas inside my pelvis juggling knives with poor form, while burning coals danced through my intestines. I managed to hide my discomfort well in public until one memorable evening in 2009. While working as a personal trainer, I was instructing a client on proper technique when she said, "Morgan, are you okay? You keep grabbing your stomach, and it has gotten quite swollen over the last thirty minutes." 

Oh no, she can see the sick! There was no more hiding it. She told me I should see a doctor about it, and I finally listened. Shortly thereafter I saw my first gastroenterologist. He seemed to know exactly what was going on with me at every appointment; he would prescribe a new drug and I would have high hopes of a full recovery and dream of a life without pain. However, every time, he was wrong. It was clear that I was a difficult case, and also evident that my doctor was frustrated. I kept reiterating that my symptoms always worsened around my period, a fact which he chose to brush off several times until he couldn't figure out the puzzle and referred me to a gynecologist. 

Reinvigorated by a pair of fresh eyes, I was confident the gynecologist would be able to figure out what was going on. She did the standardized tests for my symptoms: blood work, pelvic ultrasound (super fun), and pelvic exam. "Good news, everything looks normal! You probably just have bad periods and need to stay on an oral contraceptive to calm them. Go back to your gastroenterologist if your symptoms persist, this isn't a GYN issue." I am so over this. I wish I were a man so I didn't have to feel this pain every month! 

After being shooed away from two different specialists, I went on a two week vacation (of which I was sick half the time), and started doing my own research and digging into the science. I stumbled onto a lead I felt was promising: Endometriosis. Could this be it? This sounds like exactly what I experience. I scheduled an appointment with my GYN again, who was not so pleased to see me. "Hi Morgan, last time we saw you we had referred you back to your GI doctor, is everything okay? Are you experiencing any new symptoms?" No, actually, I'm experiencing the same debilitating pain and sickness as before, only worse and more frequently. I did some research on my own, please hear me out, I know patients do this all the time, but I'm confident that I have endometriosis. "Well, all of your test results came back normal, you didn't have any markers for that disease, and the only other way to diagnose it is through an abdominal laparoscopy, which a pretty invasive procedure for an illness I don't think you have." When can we book the surgery? I'd like to get it done before fall quarter starts.

I went under the knife two weeks later, receiving a positive diagnosis for endometriosis. 

After surgery my doctor explained that she removed as many endometriotic lesions, adhesions and scaring as possible; however, there were a few areas she said were "impossible" to remove without risking my death. Seems like a good judgment on her behalf, what you wouldn't know is that if these areas had been left untouched, I would go into kidney failure, experience nerve damage, and my appendix would rupture. These were the "cons" that made the risk of surgery worthwhile. I could sit and wait like a ticking time bomb or jump out of the plane and hip my parachute deploys! Being the adventurous type, I jumped. 

I sought out a specialist in Endometriosis care who I could trust would do everything in their power to treat me; and that is just who I found. Dr. Camran Nezhat and his team at the Center for Minimally Invasive Surgery were deemed the "best" in excision surgery; after all, Dr. Nezhat pioneered the advent of the entire procedure, so I was fairly confident he knew what he was doing. Early in December of 2011 I called his office to inquire about treatment and was scheduled for a surgery 3 weeks later down in Palo Alto, CA (a 14+ hour drive from Seattle, WA). In meeting Dr. Nezhat my worries subsided as his calm and caring nature would put any worry at 

ease. Surgery was a tremendous success! All of the sharp pains and aches I had complained of were taken away, like magic!

Since then, being the devilish disease that it is, more symptoms in different areas, and some, the same, have returned. I will be getting another surgery with Dr. Nezhat later this summer to try and wipe it out again, and hopefully for good. In the mean time, I manage symptoms as holistically as possible; I keep my body fat percentage as low as I can manage, eat a diet that discourages the presence of disease, and manage stress and pain through exercise and relaxation. 

It can be a hard battle, but I just remind myself, "You asked for it! This is your challenge, so be great!" 

Advice for the newly diagnosed: 

1. You are not alone - do not isolate yourself! Reach out to others online via Facebook and forums for Endometriosis, these ladies are the most likely ones to understand how you feel. Be open and honest with your friends, family, and romantic partners so that they can learn and adapt to your lifestyle. If they do not know, how can we expect them to be understanding?

2. Do your due diligence: be your own advocate, do your own research. If you do not understand, even in the simplest of terms, what is going on inside your body, you cannot begin to know how to help yourself. Networking with women who have been and are in your shoes is an easy way to do research if you're not fond of or strong in science, so there's no excuse not do the best you can. Besides, feeling miserable all the time is not really an option, is it?

3. Find a specialist. I do not mean a doctor who lists "endometriosis" as one of their interests on their hospital profile. You need a nationally acclaimed specialist, do not waste your time getting surgery after surgery with doctors who aren't the best. I highly recommend the Center for Endometriosis Care in Atlanta, GA and the Center for Minimally Invasive Surgery in Palo Alto, CA. I have personally been under the care of Dr. Camran Nezhat for a year and a half and his expertise has been life changing. Besides, any physician who visits you in the hospital on Christmas Day two days after your surgery is one you want to have on your speed dial.

4. Cure naturally as much as possible. And by as much as possible, I don't mean "I can't be disciplined to exercise or eat better so I have to take meds and get a hysterectomy." Your well-being is worth any change in lifestyle that is necessary, so do not throw in the towel when it gets tough. Fuel your body with the nutrients it needs, and forgo those that will make your disease worse. Do not let endo win!

5. Avoid medication at all costs. I, personally, have tried SO many medications that I can't list them all off the top of my head. However, I will say this: I have felt way better OFF meds, than I ever did on them [and they were supposed to be helping me]. Most of the medications that "treat" endometriosis are directly affecting the hormone balance in your body, and screwing with the hormones can get messy. Be prepared for side effects your doctors don't always tell you about, and research EVERY drug before you every accept one. Look at the reviews patients have written about them and the potential side effects. If you feel that the pros outweigh the cons, then try the medication, but do so cautiously. Medication should never replace good holistic remedies [adequate sleep, a nutritious diet, plenty of water, an active lifestyle, and daily time set aside for relaxation, etc].

6. Read my [Morgan's] blog. I am a personal trainer and biochemist aspiring to be and MD/PhD. I have more disease than just Endometriosis, which I have blogged about as well. I have a passion for helping others, especially those who have been unfairly plagued by a chronic illness. We can band together and fight these and be stronger than we ever would have without them. So I welcome you to follow my blog [here] and interact with me! I'd love to connect with you. You can email me directly on Facebook or comment on my blog posts.

Thank you all for reading my story! I look forward to hearing yours. 

-Morgan

*Disclaimer: All discussed above should not double as medical advice, thus treatments and medications/supplements should be discussed with your medical doctor.*