Guest Author - Sheila L McHughes
As a Mother/Daughter team we are trying to promote the knowledge and availability of LETROZOLE as a "positive" treatment for Endo.
This disease has turned our world "upside down" and has nearly destroyed our functional ability with life. The conservative figure of 90 million women world-wide that suffer with endo makes this disease more common than AIDS and Cancer.
At the age of 30 I read about this disease in a woman's magazine. I did some research at a local library and did a self diagnosis of sorts. I had been misdiagnosed for over 12 years with the Medical Profession. I have since been through 7 major surgeries. In the year 1989, the most horrific surgery that has caused permanent extensive damages to myself, I received from the hands of Dr. Mercer Lee, ob/gyn, in Jackson MS. In 2001 emergency surgery was performed by a wonderful skilled General Surgeon, Dr. J. Clay Wellborn, in Little Rock, AR. During this surgery it was necessary to remove a large portion of my colon.
Kari, my youngest daughter, at the age of 16, became the youngest female with the greatest severity of endo to go on the Letrozole treatment on February 18, 2004, after completion of Dr. Serdar E. Bulun's study.
Kari has had 7 surgeries, the first on November 19, 2003 by an ob/gyn that was of no success. I then took her to a Reproductive Endocrinology & Infertility Specialist, Dr. Michael M. Miller, in Little Rock who did a lap on December 23, 2003. This surgery did give Kari some relief but it was coming back with a vengeance the end of January. The disease from hell was growing to her back, uterus, ovaries, in her right hip, under her ribs and in her shoulders. Kari was not able to walk, sit, or function with her life, needing to drop out of school to home school . She had to give up cross country and the swim team. Kari lost contact with her friends. The depression of her losses began to set in, the smile was gone.
I have faced many tragedies in my life, but this is by far has been the darkest time in my life. This is my child and I would give my very life that she would not have to go through this terrible illness. My emotions were such that I did not know where to turn for help and my feeling of helplessness nearly gave me a breakdown. I have begun to understand that with my knowledge and personal experience with endo that I am the one person who can do the greatest good for my daughter. With this determination I have been able to overcome and move forward.
On June 19, 2004 Kari told me "Mom, the endo is all gone!" She had finally reached the point where she did not live in severe pain and most of the side effects of the treatment no longer effected her. Kari did remain on this treatment for 13 months due to the severity. On September 14, 2004 Kari had emergency surgery with Dr. Miller. We thought it would be for cysts only to discover it was severe adhesions, attaching her uterus to her intestines. Dr.Miller removed these adhesions and used Interceed to prevent others from forming. During this surgery it was also discovered that there were only 3 tiny spots of endo!!!! Dr. Miller cut these out making Kari "endo free".
Most women will do fine with about 6 months on LETROZOLE. The treatment is a combination of the aromatase inhibitor Letrozole and the progestin norethindrone acetate. Calcium citrate and vitamin D are taken to prevent bone density loss. Letrozole blocks the production of estrogen in the fatty tissue in organs where endo is fueled. Endo may be found in brains, lungs, intestines, arms, legs, spines, any body organs.
Kari has great success and positive results from the LETROZOLE treatment and in doing so will hopefully open the door for millions of young girls and women. As with any new treatment, there is no guarantee that it will be right for everyone. Letrozole does give hope to those who will choose to use this treatment for endo. I am sincere in my deep desire that everyone with endo be given the knowledge about all of the available treatments. We have had 3 local TV stations air our story, a National TV Documentary has been filmed with the final segment filmed in Chicago May 2005 when we met Dr. Bulun for the first time. Glamour Magazine has written an article in their March 2005 issue about endometriosis giving recognition to Dr. Bulun and the promise of the aromatase inhibitor treatment. I have the pleasure of holding the position of Gynecology Editor for Bellaonline, a wonderful community website for women. A book is in the works for the near future.
September 2010 marks 6 years that Kari has been free of the pain and suffering from Endo! Kari had emergency on September 1, 2005 for adhesions that had her left ovary and uterus adhering to her back. The greatest discovery was that there were 2 very tiny spots of endo on her uterus and these were removed allowing Kari to remain free of endo pain! Dr. Miller told me that these spots were not even worth mentioning, such a wonderful blessing after 6 months discontinuing the Letrozole treatment. Kari had additional surgery on January 18, 2006 for severe adhesions and Seprafilm was used as this barrier. The Seprafilm failed in January due to a severe bacteria infection immediately after surgery. Surgery in September 2006 became necessary for adhesions. Kari faced a 7th surgery in January 2007 and another in December 2007.
It is November 7, 2010 and I am writing once again for Kari is facing another surgery for adhesions and possibly endo on the 18th. I am relieved that Dr. Dan Martin, Memphis, TN will now take care of my daughter. I have been extremely impressed upon meeting Dr. Martin, his knowledge, skills, and experience go beyond any words that I could write.
Kari is an active young lady...she has been so successful with "her leap of faith" to win over her battle with endometriosis.