Wednesday, February 12, 2014

Endometriosis

When I think about how long I have endured the pain, emotional struggle, fear, and mental fatigue of chronic pain I can hardly believe I am still encountering narrow minded physicians. After 20+ years living with endometriosis, I can safely say I am an expert on MY experience. I know what works and what doesn't, I know what it feels like because it's always the same. I find it so disheartening that I am still defending this disease and my journey to trained professionals, some of which "specialize" in Endometriosis.

I consider myself a success story. I am blessed with 3 children, the pain while chronic and severe at times does not land me in the hospital on a morphine drip every time I have a period. I have gone long stints without any pain. I can push through the pain and am highly functional. But please don't mistake my ability to keep moving with not being in extreme pain at times. I learned that life keeps moving regardless of the pain and if I wanted to be a part of it, push it down and keep moving. I had the support of my parents who fought for answers and found me amazing doctors that have listened to my story without comparison or judgement; but with empathy and compassion. 

Why at 35 years old, within one of the best hospital systems in the country, can I not find a doctor that gets it? The response I would get 20 years ago before I found my team at MSU was that of disbelief in the "real" pain. I've been told countless times through the years (as I have moved often and had to go on the hunt again and again for decent doctors) that it was "all in my head", "just suck it up", and even  "it can't be that bad". Haven't we progressed with understanding of such a disease by now? Apparently not. 

This is probably going to be a bit too much information for some of you, but if it helps one woman out there or inspires one parent to listen a little closer to their daughter's complaints than it is worth sharing something so deeply personal.

 It started again a few months ago, the same thumb press to the lower spine, lasting a couple days; last month the pain lasting about a week. This month it's been 13 days and counting. It feels more like a wooden rod pressed firmly on my spine now, my ovaries feel as if someone is squeezing them right to the edge of popping, my hips feel as though someone is ripping them from the sockets, and the whole length of my back is stiff and tight and sore. The worst right now are my hips, this is how they felt when I was nine months pregnant, horrible. It's subsiding, finally, but if it follows the pattern in the near future I will be in pain every day whether I have a period or not. Never have I been told, until today, that I didn't "appear" to really be that affected by it and the fact that I have long periods of relief from such a debilitating disease that he's "not even sure I have endometriosis, and would like to see my records." This is the first thing said to me, in his office, prior to any exam. He then went on to compare me to countless patients that are in "real" pain, describing mine as "discomfort". He stated if this even was endo; that painful cases have to have surgery every 2 years and since I've gone far beyond that, well I was not on the same level as them. Never mind that over the last 7 years, I went through infertility treatments, 2 pregnancies and breastfeeding all of which can suppress the disease much like the birth control. This all was irrelevant to him. And he wonders why the tears began to fall. I have been dealing with this type of ignorant, judgmental patient care far too many times and I know I can't be alone. It is time to share my story. 

At 14 I started having pain in my lower back. It started out feeling like a thumb pressing into a spot right above my tailbone. It was uncomfortable and really never went away. Over time the thumb pressing escalated to the feeling of a knife stuck in my lower back. Intense sheering pain, every day. I remember being a sophomore in Senior Robinson's Spanish class and standing in the back of the room because it was too painful to sit. At first we didn't connect it to my period because I didn't have "typical" symptoms. Cramping was minimal and really my only symptom was severe chronic lower back pain.My parents fought for answers. I saw orthopedic surgeons, countless other specialists, MRI's, x-rays, at one point I remember missing an entire week of school because of 9 different doctor appointments. I was offered cortisone shots and told that I could have a stress fracture in my spine and might have to stop dancing, what?!!?! I was devasted at the thought. Finally, a radiologist noticed a large mass on my ovary and brought this to the attention of my OB-GYN. She recommended laporoscopic surgery immediately and I was told I could wake up with a tiny scar under my belly button or an 8" incision across my midsection. If it was cancer they would take it all out. I remember not even computing what that really meant at 15, and only caring that the pain stopped and I didn't have to stop dancing. I'm sure my parents were freaking out, but they remained steadfast and strong. My poor dad over the years has become desensitized to anything squeamish in relation to "period talk" and he is still one of the first people I turn to on the subject. Thankfully I awoke to 3 tiny incisions and my girl parts in tact. I had a collapsed cyst on one ovary and what that tech thought was a large mass was in actuality both ovaries overlapping. Woot! No cancer! What they did find was Endometriosis and a lot of it. On the back of my bladder, my ovaries covered in scar tissue and more. No wonder it felt like a knife was in my back, the spots were literally compressing my nerves at the base of my spine.  It was a relief to know that the pain was gone and that I could continue on pursuing my dream. I was told it could come back and that my chances of having children were slim to none. If I wanted to try, my best shot was before I was 30 and only by IVF.  I went on continuous birth control and suppressed my period, having it every 6-8 weeks. The surgery cleaned me up and I put this chapter of my life behind me. I had no real comprehension of the struggle that lay ahead of me. I dealt with the possibility of not having children as a child, pushed it down and kept moving forward. 

I woke up in my apartment in NYC at the age of 20, and tears immediately streamed down my face. My parents were at a sewing convention in Chicago and I had them paged (this was before everyone had cell phones -- wow that makes me sound old). The pain was back. I hadn't felt it in years, yet I knew in a second what it was. We found a doctor in NYC through my roommate and got an appointment. My "system" of delaying my period wasn't working any more and the pain was becoming chronic. I would curl in a ball when I wasn't dancing or in class, lay on my heating pad, and dose myself with Vicodin. Afterwards I would not touch the stuff again. I learned at an early age the seriousness of prescription drug abuse and I was determined to not let that happen to me. As this was not a solution, she wanted me to try this revolutionary medicine that was supposed to work without surgery. She prescribed Depot Lupron that had to be administered as a shot. What it did was put me, at 20 years old, through an intense and immediate state of menopause, hot flashes and all. My mom would send me "going through menopause together" cards to keep some humor to the situation, but it was a dark period in my life. I had extreme weight loss, which doesn't sound bad except I was already very thin from dancing 8-10 hours a day so I looked emaciated. I was depressed and the hot flashes would be so intense my dance director would comment as we were standing at the barre. She advised me not to share what was going on with my fellow dancers, as she didn't think they would understand what I was going through. Worst advise ever. Not only did I feel completely alone, crazy mood swings, far away from my family and support system; but my erratic behavior and extreme weight loss caused many to speculate and I had to fight rumors and whispers of drug use as the cause. The only good thing about the experience was that the pain was gone for 6 months. I even took a shot overseas while I was studying abroad and found a doctor to administer the final dose. A month to the day later I got my period and it was worse than before. It affected my ability to dance, and thus my ability to function in college. That was September 1999, and my parents called up my doctor at MSU and without hesitation set me up for another laparoscopy. I had a break in January and so I pushed through til then, not wanting to interrupt my semester.

Over the years, I began to feel I was damaged goods. That I may never find a partner to stand by my side and go through so much; with the possibility of being childless. I accepted that adoption may be my only chance at being a mother and often fantasized of adopting a child in my (late) 30's, dancing on Broadway, no man needed. I became reckless and put a wall up sky high. I didn't let anyone in, and when I started caring for someone a switch would go off and I would destroy whatever relationship I built.

Surgery Number 2 was a success and seeing as the protocol of continuous birth control worked before, we did the same. If I needed medication he trusted me and gave me what I needed, over the phone. Even being so far away from my doctor I knew I had his respect, kindness, and empathy. I was 27 when the pain became too much to function normally again. I had just started dating my now husband when I was scheduled for a 3rd surgery. He came with me even though we had only been dating a few months; he sat in with my parents after surgery to hear what they found. The doctor showed him pictures of my ovaries and the endo spots. I was knocked out at the time otherwise I would have spared him that. When that didn't scare him off, I knew he was a keeper. He took it in stride and stood by me through the recovery and every moment since.

Once we were serious about our future and starting a family I knew I needed to find a doctor in Chicago who could guide me into fertility treatments even though we were not ready yet. When I moved to Chicago from New York I went through several of the type I described above before I found my next great doctor. My first appointment with him lasted over 2 hours. He wanted to hear it all, from the beginning to fully understand my journey through this disease. Such a change from what I had become accustomed to and without another thought I knew he was our guy. I was getting close to my ticking time bomb of 30 given to me at 15 and I didn't realize until then how much I wanted a child of my own. My fertility trials will have to be another post but needless to say he was there for me much like my doctors in Michigan. It was such a relief to know that I had an ally once again.

At 29 we went through several bouts of fertility treatments before we rested on IVF. Much to our delight we were pregnant, with twins! I will never forget that moment of running into our garage and leaping into Christian's arms. One of the happiest moments of my life. Since then we were blessed with another beautiful girl and I have had minimal pain. I am so lucky. I know so many women that have not had the success of pain management that is crucial with this disease or been able to have children because of it. If it hadn't been for my parents tenacity to find answers, or the doctors I was lucky enough to find; who gave me care without judgement, treatment without condescension, and support with compassion; I know my story would be very different.

At 35, my pain is back. So in response I began looking for another doctor that could guide me in Cleveland and help me get to 40 without a total hysterectomy or at the very least help me transition into that realm if necessary, I did not find that in this guy. Many doctors don't want us, as endo patients require time and care, other doctors have blinders on. As frustrating as it is to come across people like this, I know that for as many of these types that exist, there are many that understand the struggle. I will keep searching for my next great physician.

My take away is this, not much has changed in the last 20 years. You know your child, if something's not right; fight until you get answers. Trust their feelings and please be their advocate. And for the women out there who have been told the things I have been and worse, I'm sorry. The emotional, mental, and physical demands of this disease are difficult enough without an arrogant, judgmental, condescending doctor perpetuating a close-minded belief. Keep searching for the diamond in the rough... they are out there and you need an ally.