April 15, 2010

I would like to share my story with other women out there with the hope that it helps them find a doctor to provide the best care to treat endometriosis.  I started to have changes to my period about 5 years ago, and gradually over time the problems got worse.  I would dread the start of my periods because the pain in my back and pelvic areas was so bad, and I had difficulty having bowel movements for 12-14 days of the month.   Two weeks a month were spent in bed with the heating pad and pain medication because I was unable to do normal daily activities.  My OB/GYN initially diagnosed me with endometriosis in Feb 2008 based on my symptoms and her recommendation was get on birth control and go see a Gastrointestinal physician (GI).  The GI doctor did a sigmoidoscopy and found compression or growth like areas in the rectum causing a narrowing of the lumen of the rectum.  My OB/GYN doctor then did a diagnostic laparoscopy that officially diagnosed me with endometriosis, and my next recommendation was to either get pregnant or have a hysterectomy.  I was horrified to think that a doctor would suggest a hysterectomy at such a young age but that was the suggestion I got.  Seeking a second opinion I saw another OB/GYN that stated after examination that I had purple lesions in my vagina, biopsies were taken confirming endometrial tissue and I was referred to an Infertility doctor since natural pregnancy was not happening.  The infertility doctor said that I needed to get the endometrial tissue out before doing infertility treatments, so I consulted with an OB/GYN surgeon, who basically said don’t do surgery do the infertility treatments because he thought the location of the growth was risky and that damage could occur to the uterus or colon.  The doctor put me on Lupron, the worst medication I have ever used in my life.  Yes it took away the pain, but it also made me bloated, moody, and gave me bone loss.  I never felt like myself while I was on it, and I took it only out of desperation because the pain was so intense.  I went to another infertility doctor in April 2009 and did a cycle of in-vitro fertilization (IVF), which was unsuccessful and made me suffer through the worst period of my life that resulted in an emergency room visit to get pain relief.  In July 2009 I went to my OB/GYN doctor again and he recommended a second IVF, so I did another treatment using donor eggs, and again in Nov 2009 the procedure was a failure.  I honestly felt like I was lost with no where else to turn and frustrated with my doctors up to this point I went to the internet and found Dr. Kanayama.  I went to my consultation appointment in Dec 2009 and was shocked to learn that my endometriosis was stage 4, with my uterus attached to my colon, the recto-vaginal septum area had tissue growth, and I had a fibroid growth outside my uterus.  Dr.  Kanayama took the time to explain what was happening in my body and that I needed to have surgery to remove the tissue. He also explained to me that endometrial tissue secretes toxins in the body that can prevent pregnancy, and had I known that I would never have gone through two IVF treatments.   I had surgery with Dr. Kanayama in Jan. 2010, and I am happy to say that I am pain free now.  I went into surgery having started my period with intense back and pelvic pain and I was post operative pain free.  The surgery was life changing in that I don’t need to take medications or hormones to make me feel better; I feel more like myself now.  Dr. Kanayama is the first doctor that I have gone to that was knowledgeable about endometriosis and the effective ways to treat it.

Antoinette