Dear Dr. Kanayama:

I have been dealing with endometriosis for over 20 years. I always thought I had endometriosis. I had all the symptoms, yet every MD I saw never gave me the diagnosis. My first GYN visit, in my early 20’s I was told to learn to live with the pain, having a baby would solve my problems. I learned to live with the pain and kept my distance with MD’s. I’d just go for annual checkups and didn’t bother to discuss the pain associated with my periods, since it was something I learned to endure. In my 30’s, I was experiencing heavy bleeding during my periods, leaving me anaemic. The MD at that time gave me a birth control pill. I could not tolerate the pill, when I called the doctor to advise him, I was experiencing difficulty breathing and my heart was racing, I was dismissed, told to see my primary care doctor since I could not be having these symptoms from the pill. The primary care doctor, since the bleeding was still heavy, sent me for a transvaginal ultrasound, that test came up with nothing.

No one on the team of MD’s I saw could explain why I was experiencing this heavy bleeding. I was sent from another GYN to see a GI doctor. I had a colonoscopy which came back fine and was diagnosed with IBS. The medication I was given kept making me sicker and sicker. I could not eat, the pain was too painful to endure, and it was round the clock. The GI doctor kept trying different medications to treat IBS, none of them worked. I spoke to several MD’s for consults. One MD asked what the GYN said. I told home I was checked out by GYN and sent to GI. I saw another GI doctor for a 2nd opinion. This MD listened, and told me he would find the cause of my pain. I was sent to upper GI work up. The radiologist discovered that my problem was not GI but GYN and sent me for a transvaginal ultrasound. I had an ovarian cyst resting on my intestines. I went back to the GYN and had surgery to remove the cyst February 2002. At that time, after the removal of the cyst, I was told to the surgery was extensive and I receive the diagnosis of endometriosis. After the surgery I felt great, I could eat again and the pain was gone.

But then I started to feel symptoms return. The GYN insisted that my symptoms were not related to the endometriosis. In 2006 I was feeling the symptoms back full circle, so I insisted to be sent for a transvaginal ultrasound. I had the test and it came back with a chocolate ovarian cyst. The GYN said it was small, so he suggested I take the pill. I was apprehensive since I didn’t have a good experience before, but was told this pill was very mild not to worry. I took the pill in August 2006 and lasted on the pill for 20 days. The MD’s continued to tell me to take the pill, my system had to adjust. I stop the pill against MD orders. I had terrible shortness of breath, I walked a block and had to stop to catch my breath, I saw an immunologist that sent me for a CT lung scan, which came back fine. She sent me to see ENT I have no idea why. My blood pressure spiked to 160/100. I now saw a cardiologist and was placed on hypertension medications.

My heart continued to race and I had shortness of breath that I could no longer walk up a flight of steps without stopping to catch my breath. The cardiologist gave me an EKG and it came back fine. The cardiologist sent me to endocrinologist and he discovered that my adrenal blood was running high so he sent me for an MRI of the adrenal gland. That test also came back fine. In 3 month he retested my blood and it came back fine. They wanted to put me on another pill, a channel blocker, to stop the heart racing, which I refused to take. Totally disgusted with not being diagnosed, I went to see another immunologist that sent me to see a pulmonologist who yet again wanted me to have a series of tests since the breathing test were coming back fine and he could not explain my shortness of breath. The GYN was sending me every 6 months for a transvaginal ultrasound. Every time it showed I had a chocolate cyst but the cyst remained the same size. The last time I spoke to the GYN he was very condescending and dismissed me telling me to see my GI doctor. I saw a GI doctor and he sent me for an abdominal CT scan, as a precaution, since he thought my symptoms were related to the endometriosis. The abdominal CT scan came back fine. At a loss I asked him for advice, what should I do, he said either see your GYN or get 2nd opinion. I opted for the 2nd opinion.

I contacted the Endometriosis Association and received material of several doctors. Dr. Kanayama’s bio stood out. I opened his website – the quote on his website reads: “Come unto me, all ye that weary and are heavy laden, and I will give you rest” (Matthew, 11:3)

I knew before I saw Dr. Kanayama he was the answer to my prayers. I called to schedule an appointment and didn’t have to wait months, like I did to see other MD’s. He saw me within a week. His office manager Sabrina epitomizes his philosophy – compassion, treating a patient as a person and not a number. Sabrina also impressed me with her knowledge of endometriosis: she has more knowledge than the team of MDs I have been seeing over the years at one of the top three Medical Centers in NYC.
Dr. Kanayama a skilled, knowledgeable, compassionate gynaecologist was the answer I needed. He didn’t dismiss my symptoms, with compassion he listened. A transvaginal was done at my first visit by Dr. Kanayama in his office. When I had the internal he immediately felt the endometriosis. He also said my shortness of breath could be a result of endometriosis on the diaphragm. The first time an MD had an answer. Within a few weeks I was scheduled for surgery.

I was lucky; I had the first surgery of the morning. The day prior to surgery, i received a call from a nurse at Greenwich Hospital telling me what to expect and was ready to answer any questions I may have. I arrived at Greenwich at 5:30 am, I was the only one on the premises and a guard greeted me and directed me to where I had to go. At 6 the receptionist arrived. I was registered and taken to my room by 6:30. A nurse greeted me; she was friendly and you at ease. She told me don’t bother to remember her name since she would not be my nurse. Bernadette was assigned to prep me for surgery. I felt like I was checking into a hotel. A private room with a bath and a bed.
The last time I had this surgery I was asked to get changed in a room with lockers that had a bench for you to sit on, after you were changed, you waited in your gown in a waiting area sitting in a chair with all the other patients waiting for surgery.

Bernadette gave me pamphlets to read while I waited; a gown and slippers to put on.
She took blood and urine sample while I rested in a bed waiting for surgery. My heart was racing, so I had an EKG, another friendly care giver entered the room to give me the EKG. While I was having the EKG the anaesthesiologist came to my room to explain what he would do, the risks involved and obtained my consent. He was very upbeat, had a sense of humor and put me at ease. At 7:30 Dr. Kanayama’s physician assistant came to bring me to the OR. She too was friendly and put you at ease, she made sure I’d have a blanket in the OR since the OR was cold. I was greeted by Mary, the OR nurse who checked that I was the right patient. Dr. Kanayama greeted me and asked if I had any last minute concerns. That is the last I recall of the OR.

I woke up in recovery to be greeted by another friendly nurse asking me my level of pain and giving pain medication accordingly. I was wheeled to my room where my mother and sister were waiting. I was tired and sleepy. Bernadette went off duty at 2 and said she’d call me tomorrow. Sarah, the nurse assigned at 2 also was pleasant, she was concerned; I had to go to the bathroom, but felt too dizzy to walk to the bathroom, so she got me a bedpan. It took me 2.5 hours and 3 times to make it to the bathroom on my own. While I was resting, a nurse would check my pressure and pulse. At 4:40 pm I was discharged and wheeled by wheelchair to my car. Like clockwork, Bernadette called me the next morning to see how I was feeling.

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