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My Struggle with Endometriosis

Patient Spotlight

By Lindsay

This is the story about my struggle with endometriosis and the people who saved my life.

I was only 12 years old and surely not sexually active. I was an athletic, and a high-energy teenager. I ran track, played varsity volleyball and rollerbladed to and from school everyday. My OBGYN attributed my heavy cramping and heavy bleeding to my intense level of physical activity and stress. Who was I to question my doctor?

Around the age of 22, I started to experience bouts of anxiety and sleeplessness. I saw a doctor who said I was as healthy as could be and attributed my symptoms to stress at work with CBS News and the fact that I had just purchased my first home.

I was 26 years old when I started experiencing increased cramping that was severe enough to take my breath away. These cramps did NOT coincide with my cycles either before or after the onset of my period. Again, I went to see my doctor for an explanation. For the 1st time in my adult life a hormone panel was ordered.

When the test results came in I was told that I had extremely high estrogen levels (671) and she assured me that the increased estrogen was the reason for my anxiety and anxiousness, my chronic headaches and sleeplessness. My OBGYN told me that taking me off the pill to reduce my estrogen levels would be the best option. Wait–take me off of the pill? My periods were clockwork with the pill and kept my cramping somewhat under control. How could she suggest such a thing?!

It was early 2009 and the economy showed signs of instability and I was laid off from my job. I had never had a stitch or a broken bone, so going without insurance for the 1st time in my life was stressful, but hardly life threatening. I spent 20 hours a day looking for work from Portland, Oregon to the SF Bay Area to Las Vegas, Nevada to Denver, Colorado. It was the worst time in my life. I started to experience unbearable levels of anxiety, heavier bleeding, and debilitating pain. I started to visit Planned Parenthood to find out what was happening to my health.

What transpired was a long road of misdiagnosis.  I still didn’t understand what was wrong with me. Planned Parenthood, a clinic dedicated to women’s health, claimed I had an STD; pelvic inflammatory disease, or PID.  They gave me a shot, I felt only increased pain.  I changed Planned Parenthood clinics in an attempt to get some answers. I continued to visit a Planned Parenthood in each city I visited while I searched for a job. I will never forget going in to a Planned Parenthood in the Bay Area sobbing and begging for them to help me. “You’re fine, no infection,” was the response.

I wasn’t fine. I knew something was wrong with me! I was put on antibiotics and asked to leave. “There is nothing we can do, Miss.”

Though the pain persisted I still aggressively looked for a job.  I was raised by two successful, self-sufficient parents who taught me to provide for myself and stand on my own two feet.  They raised me with the tools for independence.  I was 30 years old now and the idea that I couldn’t take care of myself was unimaginable.

Then in May, 2011, I began coughing up blood.  I had found a job in South Lake Tahoe as a nanny.  It was a good job with a wonderful family.  My disease would get in the way, but for a bit I appreciated the motivation to get up and go to work. I knew in my gut that my body was shutting down and time was of the essence.

During a break from work I called my mother one day and told her, “Mom, I know I am dying.”  It was the hardest call I ever had to make.  Would I ever find out what was wrong with me?

The most significant day of my life began like any other. August 7, 2011.  One minute I’m putting clothes in the washing machine in my apartment complex and the next there is a man standing above me trying to wake me up telling me there was blood coming out of my mouth and there was a pool of blood saturating my pants. I was rushed to a local hospital in South Lake Tahoe and my oxygen was dangerously low.  The nurse came in and explained that they are rushing me into surgery, “Your mother is on her way.”  I remember hearing the doctors above me, screaming back and forth about my oxygen levels and the fact that a ruptured 7cm endometrioma that was leaking into my abdominal cavity. I was given mere minutes to sign a consent form for surgery and before the clipboard was removed from my trembling hands an oxygen mask was put over my mouth and the anesthesiologist said, “Don’t worry, we will fix it and get you out of organ failure.”

Why did it have to get to this point? I had asked for help repeatedly.  I felt both afraid, shocked and to be perfectly honest…angry.

On August 7, 2011 I was in surgery for six and a half hours.  I woke up to a stunned surgeon, “You have the worst endometriosis case I have ever seen.  It’s everywhere.” Endo what? I literally asked for a computer so I could Google the word I just heard. As they explained to me what endometriosis was I only had one reaction; pure joy. Finally, an explanation for what I had been dealing with! I had Stage 4 Endometriosis.

They explained that they lasered as much of the endometriosis as possible but they couldn’t save my left ovary and left fallopian tube. In addition, I underwent an ablation of my uterus to burn the disease off. The caseworker, aka bill collector, came in and informed me that because I don’t have insurance I would be released as soon as I was stable. With no insurance, I was still actively vomiting when I was released and told, “You need to find a specialist; we wish you the best.”

I had just collapsed while doing laundry and woken up in the hospital. I felt so helpless and confused. I went home and sat at my computer for hours. I learned anything and everything about endometriosis. Why had I never heard about this disease before? I was stunned to discover that the disease is not only common, but an epidemic among women of all ages, all races, all economic statuses and religions.

In September 2011, I was unable to urinate on my own. I was referred to Highland Hospital with a possible new diagnosis of bladder cancer. I started dating a man who despite my health issues continued to want to spend time with me. He joined me in my research quest to learn everything about endometriosis and to find a specialist that could treat me.

In late October 2011, we went back to the Bay Area, to Highland Hospital, armed with my medical records.  They preformed an emergency cystoscopy for bladder cancer because the endometriosis, along with the life saving surgery in Tahoe had damaged my bladder. There was “little to no viable healthy tissue” left on my bladder, but, thankfully, no cancer. They scheduled me for surgery in August 2012 — a year later.  I was repeatedly doped up on painkillers given Depo-Provera shots to keep the endometriosis at bay. Not a solution, but simply a way to mask the issue and circulate me through the system of community health care. In the midst of all of it, more and more visits to the ER.

My boyfriend, Christian, never left my side. My health had become so compromised that in February 2012 I quit my job in South Lake Tahoe. I started to cough up viable blood on a daily basis by March 2012. One night he had been on the computer for several hours and was researching insurance options online, “I cannot watch you die.”  He would not leave the computer.  It was now April, 2012.  President Obama had been working on health care coverage for people like me.  I didn’t realize it was available to the public — I thought, maybe someday. After all, it’s not my fault that I now have a pre exisiting condition that is literally eating me alive.

But Christian discovered that Affordable Health Care Insurance (Obamacare) PCIP was available and he went online and signed me up.  He crawled into bed with a piece of paper, “You’re approved.”  I now had insurance — I had Obamacare. Christian had found a way to save my life. Moreover though, he wrote the check that would save my life. I was unable to pay the $235 a month for the platinum plan, which is what I needed for full coverage. A bronze plan wouldn’t cover the kind of surgeries I needed. I now had the right to see a specialist.  And see one I did.

I went straight to Stanford.  “I’m in bad shape, “ I said with a limp because my right leg would shake continually and I was unable to stand for more than a few minutes.  “Please, please help me,” I begged. I was a severe case, and they were very interested in studying patients just like me.  I was referred to a world renowned endometriosis specialist — and even though he didn’t take my particular insurance at that time — he took on my case anyway.

I was so hopeful for the 1st time since my diagnosis.  On May 5, 2012, I went in to see Dr. Camran Nezhat.  I had read about him and I considered him to be the best specialist I could see. He listened to my entire history.  With relative ease he said, “I can help you; I will help you.” He asked me to sign on to his study.  I couldn’t wait to.  He suspected the disease might be on my sciatic nerve and said surgery would be required immediately. Pre op workups followed and surgery was promptly scheduled.

On May 16, 2012, 3 months before my scheduled surgery with Highland Hospital in Oakland, California, I had my first surgery with Dr. Nezhat.  I was truly scared but his confidence helped me through the fear. Right before the surgery process I was able to make eye-contact with Dr Nezhat. “Please give me my life back,” I whispered to him, “Please get me back on my feet.” With his soothing soft spoken Persian accent he calmly replied, “I am here to help and help you I will.”

My appendix was removed. My bladder, my colon, my bowel, my diaphragm, and even my sciatic nerve were operated on. Dr. Nezhat would later explain to me that my sciatic nerve would take a year or more to fully heal. The sheath had to be removed and the nerve scrapped down to remove the endometriosis that was consuming it. Recovery would be long and hard, but I felt such comfort knowing that Dr. Nezhat was in my corner.

The anesthesiologists had noted down that during my operation they had a great deal of trouble ventilating me while I was under. I was referred to a pulmonologist specialist and a thoracic surgeon at Stanford for further evaluation. A new diagnosis was reached, thoracic endometriosis.

After healing from normal post surgery pain it was clear to me that endometriosis was still affecting my daily life. It was explained to me that this was a serious case and it would take more time.

Stanford lung specialists struggled with my case.  You could tell they were fascinated, and they really paid attention to my case.  I went back to Dr. Nezhat bi-weekly for vaginal ultrasounds to monitor my case and take tissue samples for the study. Endometriosis can only be seen with an exploratory laparoscopy surgery so my symptoms and level of pain were key in monitoring my situation. It was so refreshing to have a doctor that actually wanted to discuss my pain! Dr. Nezhat and his team wanted to know when I had pain, how bad the pain was, and, specifically, where the pain was. As my pain continued to escalate the ultrasounds became more frequent.

I would be back in surgery immediately.  He sat with me before surgery.  He explained that he had to do a total, radical hysterectomy, involving the removal of my cervix, ovaries and uterus.  He went on to say that we need to be as aggressive with surgery and treatment as the disease is with me. The recovery would be difficult, but he would do his very best to get all of the endometriosis. On October 8, 2012, I had the hysterectomy surgery, I was 33 years old. It truly released me from my pain and gave me a chance at a quality life. To this day there is no pain.  He had removed my endometriosis but there is still no cure for endometriosis. I have had a long road to recovery and I have had to learn to manage the damage the disease has done.

I now have 9 specialists who all work together to manage my many health issues from the fallout of endometriosis damage. The disease was simply not diagnosed in time. Dr. Nezhat collaborates with each of them offering his perspective on endometriosis as it relates to the damage endometriosis has done.

I have made tremendous progress.  I’m not the athlete I was years ago, but I am active. After years of no answers and a total of 4 surgeries, I now have a pain-free life.  I feel good that I helped the medical community learn more about the disease, but there are still more questions than answers. Pioneers like Dr. Nezhat have dedicated their lives to helping women battle this disease, but more specialists in this field are needed and more medical professionals need to be taught the warning signs for endometriosis. Women need to become their own advocates and arm themselves with the power of information to spearhead efforts toward a change.

As an endometriosis sufferer, I have decided to spread the word about endometriosis by taking my message on the road. I don’t want women to suffer what I went through. I want to do my part. So, I now live full-time in an RV and I’m traveling throughout the United States, speaking with anyone and everyone about endometriosis. Even attending the Million Women March for Endometriosis in Washington, D.C. on March 13, 2014 during Endometriosis Awareness Month. It’s time to unite women to take a stand against endometriosis. Educating people about the effects and working with our government and congress to allocate funding to develop non-invasive diagnostic tests and early detection is key to getting the upper hand on this horrible disease.

Let’s all make sure we all get the word out so progress can be made in the fight against endometriosis. My life was saved by a stranger who took the time to get me to a hospital in 2011, the surgeons who handled my emergency surgery, my better half and the love of my life, Christian, my surgeon Dr. Nezhat, my parents and their unconditional love and support, and my new family of Endo Sisters. There are so many of us, too many of us, with the same story. Years of suffering, misdiagnosis, mis-information, missed opportunities, and pain, so much pain. There is something each of us can do to get the word out about endometriosis and the damage left in its wake. Together we can!

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