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We are in this together. This is not only my story but ours.

I knew something was wrong when I was about 14. My menstrual cramps were painful, to the extent I could not do most things loved by the typical teen like ride a bike, go to parties or participate in sports. And the bleeding, well, you can relate to that I am certain. I felt alone and confused. Why was this happening to me?

My mother took me to my pediatrician and then to an internist, but the only diagnosing to do was with my psyche and not my physical self. I was devastated. How could I be thinking up something this awful? Clearly there was something else. I knew it, my mom knew it, yet we were getting nowhere. When enough doctors tell you over and over again that the pain is in your head or that you don't have a *real* problem, even you begin to doubt yourself, and that began to happen to me.

Me and My Mother!!

My resolve began to turn when I finally went to another gynecologist. He taught me a new word: Endometriosis (EN-DOUGH-ME-TREE-OH-SIS). I could barely pronounce the word let alone actually believe a doctor had finally uncovered what might be the answer to years of questions. I was beginning to see a light at the end of the tunnel, but that light was quickly dimmed when I found our that Endometriosis or "endo" was incurable.

After learning more about it I became increasingly anxious and followed the gyn's advice to have an exploratory surgery called a laparoscopy. A laparoscopy is an exploratory surgery and is the only way to find our if you have endo. A slim instrument called a laparoscope is inserted through your navel and a camera is placed at the other end. The surgeon can view all of your pelvic cavity and see if there are any abnormal tissue characteristics of endo. One has to take a biopsy or sample of the tissue to see if it is really Endometriosis. The doctor came out and told my family what he had found; Endometriosis. Little did I realize that this one word would change my life forever.

I have since had nineteen surgeries including a total abdominal hysterectomy slapingo-oopherectomy (removal of uterus, both tubes and ovaries) and surgery for an adhesional bowel obstruction.I have also had ten laparoscopies and ninelaparotomies as well as numerous nerve blocks and other procedures. I was found to have severe endo on my uterus, ligaments, cul de sac, kidney, urethra, bowel, rectum and abdominal wall. I also had adenomyosis which is essentially endometriosis within the lining of the uterine wall. They found this during the laparoscopy using a hysterescope doing what is commonly referred to as a hysteroscopy. ( Please see adenomysosis page). I have been on Lupron twice, Danazol once and Birth Control Pills. The first time on Lupron was very successful with I had limited side effects. The second time was much far leaving me with no relief from the relentless pain. I was also hit hard with menopausal side effects such as hot flashes, night sweats and moodiness. As you well know, this was only a form of maintenance, and after each cycle was finished, I would need surgery again. A pattern soon developed. Pain, medication, surgery, hormonal medication, brief reprieve and it would begin all over gain. I was diagnosed at 18 ( although I know I had it when I started my period) and I am now 37. I feel like I am far older. Somehow, living with this disease makes you grow up fast. I have also tried many different forms of pain therapies including but not limited to narcotic and non narcotic medications, physical therapy and spinal cord surgery.

I am happy I had the hysterectomy as I don't miss those nightmarish periods, however, I am still in pain from endometriosis and severe adhesions that have developed as a consequence of numerous surgeries. The fact is that the more surgeries you have, regardless of the severity of the endo, the more adhesions and scar tissue you will form. I have lived with that continual pain of both and that has been very difficult. I have had numerous surgeries since my hysterectomy for recurrences of endometriosis, bowel obstruction and lyesis of adhesions. It has been like waging a war - essentially I have waged a war - against endo. I won't stop fighting until we have more answers and fewer questions. I support ALL women who come to me regardless of their decisions. You are never alone and you have support. I care and I understand.

That is why I started writing and why I am here. I wrote my book on Endometriosis so I could help all of you who are suffering.

I love my family, including my husband, since it is these individuals who live with me and give me the will to see another day, It is so important to have those we love understand what we are living with. Information and communication have helped my husband learn more about endometriosis while enabling us to endure the toughest of times this disease brings. There is a chapter in my book just for Men - I recommend that every couple who lives with endo read this. Most of all, I was never able to have any children and that was a very hard thing for me to get through. I know that many of you are faced with the same gut wrenching truth and I want to remind you that you are never alone. Adoption is a wonderful and viable alternative to having your own biological children. Above all, I would like to thank GOD, for doing, in times of chaos, what I could not do for myself.

THIS IS YOUR BODY AND YOUR HEALTH RIGHT!

It is imperative to watch over your own history. At each visit sit down with the doctor and have a list of questions and a small tape recorder and tape the conversation. Listen to it again when you get home. Do you understand what is going on? Do you need more time? Be sure to go at your own pace and don't worry about their time frame or what they have to get down that day - this is YOUR time. You need and deserve a doctor who can take the time to listen to and empathize with your issues - one who will allow you to mutually come to conclusions that you feel comfortable with. Most of all , trust your gut. If he/she makes you feel embarrassed or humiliated or uneasy, walk right out and get a new GYN ( or whatever doctor you need), I have had to find a new doctor on a few occasions and although it seemed like an overwhelming task at the beginning, once I was settled in with the new doctor who was much kinder, more compassionate and understood me better, I was so grateful I had changed! DO not feel guilty, this is your body we are talking about, remember?

KNOWLEDGE = POWER

For more information on my experience with chronic pain please see Chronic pain page