The Beginning of my troubles and my battle for a diagnosis
A Special Message from Ryan to the Visitors of this page
Updated December 28, 1999
The Story that proceeds this introduction is a very personal one. My battle with ENDO has been long, hard, painful, and very upsetting. I am still fighting and will continue to fight until a cure is found. From the first day I got those terrible pains up until today ENDO has been nothing but a curse in my life, but there is one part of ENDO that I can't help but being thankful for and that is the wives, the husbands, the sisters, the brothers, the sons and the daughters that I have met and have written to me since this website was put up and given me such words of encouragement, personal stories of pain, and even established friendships with me. To each and every one of you and to all the visitors of this website that take the time to read it and learn from it, Thank you for everything! ~ Ryan
I was only 17 when my symptoms first showed themselves. The pains would only manifest during my period. I thought that the pains were just cramps. So, I would take some ibuprofen and curl up with a heating pad on my abdomen. As the months wore on the pain became more and more intense..making me dependent on frequent doses of ibuprofen and actually reducing me to tears on an everyday basis.
In the summer of 1997 I was having terrible pains, even when I was not menstruating. One day I was walking along and suddenly the pain struck me with such an intense stabbing force that I fell to the ground and was in severe, crippling pain. At that moment I knew something was horribly wrong and I had to see a doctor.
At 17 everything runs through your mind all kinds of reasons and medical possibilities, with the pain I was experiencing and the misery I was in I was horrified that they were going to find something that might just kill me. I made an emergency appointment with a gynocologist for the next day. This was my first visit, I was scared to death. I was given a routine pelvic exam, pap smear, and breast examination. I inquired to the nurse about my pain, and her answer was very upsetting. She told me that the pains were "normal", and it was all a part of "being a woman". She prescribed Ortho-Tri-Cyclin (birth control) and sent me on my way. I was essentially told the pain was in my head. I took the Ortho-Tri-Cyclin and that proved to do nothing.
A year later, when the pain was un-bearable I made another gynocological appointment. I told the NP about my pain, she listened and understood. She ordered a pelvic ultrasound for the following week. I went in and got the ultrasound and waited for days to hear the results. When the NP called I was told I had a cyst on my right ovary, and ENDOMETRIOSIS. She immediately planned my treatment. I was unsatisfied and confused about my diagnosis, so I took the intiative and went to a Doctor. The Doctor was Dr. Jantell Allen-Davis (Kaiser Permenente), she discussed me having a Laparoscopy.
This was my first surgery, and I was scared to DEATH! My whole family came from their homes located all over Colorado, and offered me outstanding support. I went into surgery on July 10th, 1998. When I awoke in recovery, I was in so much pain, I was given multiple injections of some of the most potent painkillers (morphine, demerol, etc..) they didn't take the pain away. I was sobbing and I was distressed at the pain caused by the surgery, I was really hurting. The nurse told me that crying would do nothing. I was alone, agonizing in pain until my family came in to see me, they were heartbroken at the sight of me, I was maxed out on drugs and still in great pain. It was discussed that because of the extreme pain I un-routinely remain in the hospital for the night under the care of nurses. I decided to go home with my mom.
I was in so much pain, I couldn't even sleep in my bed. I slept on the couch. I was awoken by an awesome, intense pain in my right shoulder. It was a side effect from the gas used to fill my body cavity, some of the gas apparently got trapped and pinched a nerve causing this new pain that added to the first. I was miserable. It took me 20 minutes to get off of the couch and go to the bathroom. It took me 4 days to recover completely, and I then went back to my own home. I was then told that I had minimal ENDOMETRIOSIS. I have it on my uterus, right ovary, bladder, intestine, and also on my abdominal tissue. I have some scarring as well. I was told by my doctor that at the age of 18 I should consider having a baby to help with the pain and have a child while I possibly still could. A baby in the future might not be possible!
My experience with Depot- Lupron
In Late July of 1998, I began the first of my treatment shots. The treatment I was given is called Depot-Lupron (LUPRON). It is given as an injection into the hip.
Lupron is supposed to work by effecting the pituitary gland and making the body stop producing a high level of estrogen. This puts the patient into a Pseudo-Menopause...a medically induced menopause. Periods stop and the reproductive system is suspended until the shots are discontinued. Over a period of 28-30 days the LUPRON slowly releases the vital chemical to allow the shut-down of the ovaries. Endometrial cells are believed to thrive and grow with the help of estrogen, the pain is caused by menstruation which stops once the Lupron takes effect. The typical treatment lasts up to 6 months of continuous shots every 28-30 days. Most women experience side effects similar to that of a woman in menopause; Hot flashes, fatigue, insomnia, back aches, neck aches, joint aches, memory loss, loss of vision, bone loss, loss of appetite, weight gain, weight loss, depression, mood changes, in rare cases hair loss (Alopecia) and also heart problems like arythmias. People with a family history of osteoporosis and cardiac problems such as heart disease are urged not to take Depot-Lupron. I have a family history of osteoporosis, but was not informed of the bone loss side effect.
I had a hard time dealing with the initial changes in my body during the first couple months,and my body's adverse reaction to the Lupron. I experienced the following; SEVERE hot flashes (eased with the use of ice packets and fan), mood changes, depression, loss of appetite, SEVERE memory loss, loss of balance (I actually fell over), back aches, joint pain, and countless other ailments associated with Depot-Lupron. After 6 months of being off Depot-Lupron and receving NO treatment at all I am pleased to say that it worked for longer than expected. The cramps are back, but the pain is not chronic, it comes and goes with every monthly cycle. For the first time in 2 years I go about day to day with nothing to hold me down. During my treatment I didn't like what my body went through, but the benefits I am experiencing now made all the hassel well worth it. My periods returned almost immediately after I got off of the Lupron. I do have cramps sometimes they aren't as painful and sometimes they are, but they are easily cured with some regular ibuprofen.
I am happy with the outcome of Depot-Lupron.
The 6 months of Lupron were only the beginning, during my lifetime I expect to have countless other surgeries and experimental treatments. It is also a very real possibility that I will never have the opportunity to ever give birth to a child of my own. Until a cure is found, millions of women have to endure the same heartache, pain, distress, sadness, and overwhelming grief that I do on a day to day basis. I am lucky, I have a family that supports me, friends that care, and wonderful strangers like the readers of this page who extend their spirits and show me how this wicked disease even hurts good people.
I wish with all my heart that something more could be done to raise awareness for ENDOMETRIOSIS.
I wish more research was going on.
I wish that doctors would listen more to their patients and stop acting ignorant.
I wish there was a cure.
This website is dedicated to all the Endometriosis sufferers of the world, to their families, to their supporters, and to the doctors that listen, help, and do everything they can to lessen the pain of this womans curse.
December 28, 1999