I just wanted to provide this forum with some valuable information. I have done tremendous research and traveled the country in search of the best resources to cope with endometriosis. I recently underwent surgery with Dr. John Rock, former president of the World Endometriosis Society. He is a leading expert and innovator in the research and treatment of endometriosis. He performed a laparotomy on me in October 2002 and the results have already been remarkable.

I am finally pain-free.

I am 23 years old

and I have been suffering from endometriosis since my first menstrual period at age 11. My younger sister was diagnosed with endometriosis at age 13. She and I have been treated by the most prestigious medical facilities and doctors in this country. I have visited the Mayo Clinic in Rochester, Minnesota, the University of Michigan Hospital in Ann Arbor, Michigan, Dr. Marc Laufer at Boston Children’s Hospital in Boston, Massachusetts and with doctors such as Dr. Rock at Emory University in Atlanta, Georgia. I have also consulted with Dr. David Redwine in Bend, Oregon and gynecological specialists at the University of Miami Medical Center as well. I have done tremendous research in medical journals and consulted with numerous other physicians nationwide.

It saddens me to hear of the countless surgeries that you all have undergone and the fact that doctors do not know how to properly treat endometriosis. I have been in your shoes.

But now with the expertise of Dr. John Rock and his team of gynecological specialists at Emory University, I am well now and I am off all hormones and prescription drugs for the first time in 12 years.

Since I was 11, I have been plagued with cramps, lower back pain, cystic ovaries, gastrointestinal and urological symptoms due to the endometriosis. There is no cure for endometriosis.

But there is help out there.

Dr. Rock has taught me that often times, as with my case, laparoscopic surgery is not thorough enough in exploring and treating endometriosis. Often times, the endometriosis is deep within the pelvic cavity, it is in the retro-peritoneum and deep in the utero-sacral ligaments. The laparoscope is often unable to see all of this deep endometriosis. That is why a laparotomy is often necessary.

I was first diagnosed and treated laparoscopically in 1999 but my symptoms did not improve, even with continuous birth control usage to suppress my periods. I have learned that there is a type of endometriosis that one is born with, like myself and my sister. The pain is present before one’s first menstruation or at the onset of menstruation. This type of endometriosi is congenital-one is born with the disease. This is the deep disease that needs to be removed by laparotomy.

I have also learned that hormones do not always suppress the growth of endometriosis. Often times, hormones are only implemented to suppress the symptoms, not the growth. In addition to excising, not lasering or burning the endometriosis, Dr. Rock and his colleagues at Emory also perform a procedure called a presacral neurectomy to combat the neurological pathways that transmit pelvic pain.

It is important that young girls and women, like yourselves, realize that painful, debilitating periods are not normal. It is very important that you find the right specialists. There are too many myths and misconceptions out there regrading endometriosis. You owe it to yourselves to find the best healthcare providers. I consulted with very reputable specialists in my hometown of Miami, Florida but I was misdiagnosed for nine years and not treated comprehensively enough with laparoscopic surgery.

I urge those of you out there, both young and old, to find the best doctors. Your pain is real. Wonderful endometriosis specialists are out there. They are just often difficult to find.

Endometriosis can only be diagnosed through exploratory surgery such as laparoscopy and laparotomy. It is not necessary to have multiple surgeries and radical surgery such as hysterectomy. My reproductive organs have been spared because I found the best resources and the best doctors. I have tried everything from hormones to acupuncture. These treatments only mask the pain-they do not rid you of the disease.

If you have any questions, please contact me via e-mail at risajb@aol.com and I will help get you in touch with the best endometriosis specialists. I want to help spare you some of the pain my sister and I have endured. It is important that you take an active role in your health-your quality of life and your fertility are at stake.

My name is Mandi Hood. As I sit and write this I am recovering from a hysterectomy on October 2, 2002. I am 32 and was diagnosed with Endometriosis at 21. I have had 12 surgeries in the last 11 years. I almost feel like an expert now. I had Endometriosis, polycystic ovaries, and fibrocystic tumors. I so wanted a child so when the doctors told me to have a hysterectomy at 21 I told them no that my God was bigger than them and they were not removing any of my body parts… thus begins my long journey.

After many fertility treatments, Lupron treatments, and many other treatments, I did eventually lose my left ovary and fallopian tube in January 2000 because of a cyst the size of an orange. Every surgery brought more bad news of scar tissue and Endometriosis. My uterus was always stuck to my endometrial wall as well as my ovaries. I also had Endometriosis on my colon and no doctor dared to touch that. Pain has been my constant companion for all of these years. I was diagnosed with fibromyalgia in August 1999. I had no idea the two were related until now.
In August 2000, after giving up hope I found out I was pregnant. My husband, Edward and I now have a beautiful 18 month old baby girl. She is my miracle. Last month I started my period and it was awful. I was bleeding so heavy and passing large clots(4inches in diameter). I had to wear adult diapers. After two weeks of bleeding like this we did another surgery. By the time I got to the hospital my blood count was down to 9. When they got inside they found horrendous scar tissue. My uterus and colon were completely fused together and once again I had fibroids in my uterus. I started bleeding and lost 900cc more blood. I had to have a transfusion. The first few days after surgery I was in so much pain that I swore that if I died and went to hell that Satan would used a hysterectomy as my eternal punishment. Now 9 days later I look at my little girl and thank God for her and for my life. I needed to share my story to let other with this condition know there is hope.
Copyright © 2002. Mandi Hood. All Rights Reserved.