Sheehan's Syndrome Experience By HypoGal

My HypoGal Story
Most of my life I have never really understood or considered what the words “chronically ill” meant. I had always related the words, "chronically ill" to someone who had a terminal disease. I had no comprehension about everyday life with a chronic disease. I had taken for granted my high level of energy, my ability to walk, talk, socialize, use the restroom and drive a car. I had no idea that after the arrival of my second daughter, Isabella, my life would take on these words, chronically ill.

Hi, my name is Lisa and I have Sheehan’s Syndrome. I hope that my hypogal story may help other women that suffer from undiagnosed Sheehan's Syndrome. This is how my story begins… I gave birth to my oldest daughter, Sarah, via C-section on January 24, 1998. It was a Friday late afternoon when my water broke and unfortunatly my OB was on vacation. After I arrived at the hospital the labor nurse informed my husband and I that my cervix had not dilated and I needed to be induced. As my contactions began, I felt that my labor pains were not normal. I screamed to the labor nurse that I was in excruciating pain and I felt that each contraction was pulling on my organs. I pleaded with the labor nurse to have an OB confirm that my labor contractions were normal. The labor nurse politely discredited my pleads. My OB OnCall did not arrive into my labor room until 6:00 AM Saturday morning. As soon as the OB arrived it became apparent that my condition was beyond her scope. A different surgeon performed my c-section and discovered that I was hemorrhaging. My gut instinct was correct and my organs were being pulled out. My daughter's umbilical cord was imbedded inside my organs. I had partial placenta accerta. Thankfully, the surgeon was able to stop the bleeding and save my uterus.

My uterus was saved and after several miscarriages I was able to become pregnant with my second daughter, Isabella. Because of my pregnancy history, a planned C-section and delivery date were chosen, March 15, 2002. Immediately after the delivery my daughter, I knew something was terribly wrong. I could feel my body beginning to fail. I began to vomit, my body temperature was too low and I was so tired. I was not aware that my body was experiencing an adrenal crisis.

One week later I arrived home with my beautiful new daughter but I never felt normal. But, what was my normal? I had just been through five years of difficult pregnancies. I had never been ill before. I thought that I must just be like all new moms, tired. But, as a couple of months passed my fatigue increased and my weight rapidly decreased, I knew my body with not functioning correctly. All of my food intake would go rapidly through my system. As the weeks continued my body became weaker and my energy level was very limited. I had so many different symptoms: extreme fatigue, depression, limited short term memory, trouble forming words, dizziness, body aches and extreme abdominal pain. I didn’t even want to list all my symptoms because it would sound like I was a hypochondriac.

Oh, my poor family and husband. I would cry at the drop of a hat and everyday life just overwhelmed me. I felt so ill and so weak. I would cry in pain but I didn't know what was wrong. My husband did what he could to be supportive. But, at numerous times I am sure he thought I had severe post partum depression and that I was indeed a hypochondriac.

I conveyed to doctors that all of my symptoms began with the delivery of my second daughter. There must be a connection between the birth of my second daughter and all of my symptoms. But, doctor after doctor, specialist after specialist that told me that I was fine. All my lab results were normal. My blood pressure was a great, averaging a low 90/60. Numerous doctors told me that I had post partum depression. I explained to doctor after doctor that I was depressed because I was ill. It became extremely apparent by December, 2002 that I was seriously ill. I was so skinny, but not healthy skinny. I was pasty white, skin and bones, too weak to lift my baby daughter and too dizzy to walk. By this time, I really didn’t care about dying. I just wanted to find out what was wrong with me. I felt utterly hopeless.

Searching for an open minded doctor with an open ear, my husband placed emergency phone calls to friends. A good friend referred me to an Internist at UCLA, Dr. Larry Froch. It was Dr. Froch that first suspected that I might have Sheehan’s Syndrome. He was the first doctor to ask me if I had ever hemorrhaged during childbirth. Dr. Froch referred me to the Head of Endocrinology at UCLA, Dr. Van Herle. At first, Dr. Van Herle questioned the diagnosis but after failing the Metyrapone test it was confirmed, I had Sheehan’s Syndrome.

Sheehan’s Syndrome is a rare disease and the treatment always needs to be balanced. My pituitary gland doesn’t signal hormones to produce and I need to take replacement medication throughout the day. I can best relate the pituitary to an automobile ignition switch. My body, like a car has all the working parts but a non functioning ignition (pituitary gland) switch. The pituitary gland is similar to the ignition of an automobile. The pituitary gland sends out operating signals throughout our body. While I am very fortunate there are medications to help replace the hormones that my body doesn’t produce, medications are never quite the same as what your body would produce naturally. My body does not act well to stress of any kind. Events such as an illness, physical or emotional stress can send my body into an adrenal crisis.

I am extremely fortunate to live in a time where I have access to information, i.e. The Internet. Without the Internet, I would never have connected to an incredible group of Sheehan’s Syndrome women. This online group has given me so much knowledge, compassion and a place to emotionally connect. From this online group I was able to find a knowledgeable Endocrinologist who specializes in the pituitary. Many Endocrinologist only specialize in Diabetes and they don't have many pituitary patients. Most doctors and Endocrinologist have never had a Sheehan’s Syndrome patient. Most medical books state that Sheehan Syndrome woman can live a, “normal life” with medication. I have never heard of or met a Sheehan’s Syndrome woman that lives a normal life with medication.

Finally I have a diagnosis, Sheehan's Syndrome. However, my dominos continue to fall. I become shorter and shorter of breath. On a daily basis I feel I that I am not receiving enough oxygen from my lungs. Very concerned and frightened about my lack of oxygen, I made an appointment with a Pulmonologist, Dr. Schiffman. Dr. Schiffman informed me I needed to use my asthma inhalers and that I may have some bronchial issues down the road. Weeks have past and my ability to receive oxygen continued. It was such an effort to breath and I felt like I was suffocating; I couldn't get oxygen. For over an hour my husband witnessed me trying to obtain oxygen. My husband feared for my life and drove me to our local ER. My Pulmonologist, Dr. Schiffman was at the ER and told my husband and I that the X-rays of my lungs were normal. He then walked my husband outside and told him I was depressed and had anxiety.

Dr. Schiffman told me he could write me a prescription for anxiety medication and that I needed to leave the ER and go home. I then proceeded to have an emotional breakdown in the ER. I told Dr. Schiffman that if I went home I would die. Dr. Schiffman then told me that there was nothing wrong my lungs and I just had anxiety. I told Dr. Shiffman I was anxious because I couldn't breath. My husband was then relentless with Dr. Schiffman that additional tests needed to be ordered. Dr. Schiffman was sarcastic and expressed with certainty that my lungs were fine but to appease us he did order a VQ Scan. From the VQ Scan I went right into Critical Intensive Care for two weeks. My lungs were filled with hundreds of small embolisms. One embolism can kill you. So, on blood thinners for life I went.

A year goes by and it is now March 2004. I am still experiencing extreme abdominal pains, especially on my lower left side. I had seen a Gastro Internal Doctor, Dr. Trenbeath for this constant extreme abdominal pain in 2003. I was told by Dr. Trenbeath that I was just depressed and stressed from being a new mom. I was insistent with Dr. Trenbeath that he must run my labs and perform a colonoscopy. So in 2003, Dr. Trenbeath performed a colonoscopy and endoscopy. Dr. Trenbeath told me that all of my GI tests were normal. During early March, 2004 I felt an extreme sharp chest pain. I believed at the time, I had another embolism. My husband then drove me to the emergency room. At the ER a CT scan showed that I had air in my abdominal cavity. Upon the doctors review of my CT scan, I was wheeled into the operating room for emergency exploratory surgery.

I awoke in a recovery room with my abdomen split open and a colostomy bag on my right side. My colon had perforated due to serve Diverticulitis. The surgeon was upset and told my husband and I that my colon shouldn’t have perforated. The surgeon couldn’t believe I had a colonoscopy a year prior. Two months go by before my abdomen wound closes. My eight itch abdominal incision had to be left open to heal naturally. My body and emotions don’t do well in the healing process. I am fortunate that two months after my surgery I was able to have the reversal surgery and my colostomy bag was removed. My youngest has just turned two. I felt blessed to be alive but robbed of my daughters young years.

My life with Sheehan’s Syndrome continues to have challenges. My weight goes up and down, my immune system is compromised and my tendency to have unexplained illness has become a way of life. I can completely empathize with those who have Fibromyalgia and Chronic Fatigue Syndrome. I have also become accustomed to life with numerous bouts of Shingles. I have a new profound frustration with our medical and health insurance system. As most would agree, our health system needs some serious changes. However, within our health system there are many dedicated, caring and intelligent people.

Life with an invisible disease can be extremely difficult at times. Looking at my appearance, you would assume that I am healthy. Almost everyone who sees me is not aware that it can take me hours to get going most mornings. And, each day can be so unpredictable. My windows for being productive are often short and sporadic. I feel that unless you have a chronic illness it can be difficult to understand my short time frames of energy.

But, who am I now? Some people have told me that I must be thankful to have learned so much from my medical odyssey. I always reply the same, no. I would love my healthy body back. I feel that so much for my life has been spent surviving and not living. I truly miss not being able to go at a moments notice, going on long walks, spending the day in the sun or being able to have shop to you drop days with my girls.

Here is a list of the top three lessons I have learned from my medical odyssey:

A person should never try to outsmart their common sense.
You should always listen to your internal voice.
A person can be seriously ill and have completely normal labs.
Every now and then, I need a "time out" for a pity party. I do try to keep my pity parties short. I often snap out of my pity party when I recall the wise words of a friend. My friend told me, "if everyone put all of their problems out on a table then everyone would happily take back their own problems. But most of all, I have learned that the old cliche, "if life gives you lemons then you learn to make lemonade," is all so true.

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