My Battle with the Beast
I remember the beginning of my battle well. It all began in October 1995. With that month's cycle, I had more cramping than usual and the cramps continued even after my period ended. By post-period day 5 I was coming home ready for the heating pad. I would curl up on my bedroom floor, heating pad practically glued to my stomach and just cry. My mom finally convinced me to go see someone for the pain. Being that I was 19 years old and self-insured, I went back to Planned Parenthood where I'd been getting all my Ob/Gyn treatments for the last year.
Stacey, the clinician, thought I might have a vaginal infection so she put me on 2 weeks of antibiotics and Anaprox for the pain. At the end of those 2 weeks, I was not any better, so back to Stacey for another visit. During the pelvic exam, she pushed around my left ovary and I shot up off the table in pain. At this point Stacey knew that I needed more than Planned Parenthood could offer. She referred me to a specialist friend of hers, I'll call her Dr. F.
Early November 1995 I had my first visit with Dr. F. She did a pelvic exam, asked a few questions and told me it was a combination of stress and Irritable Bowel Syndrome. I was to return in 2 more weeks if the pain was not gone. The Bently she prescribed helped with the pain, but only because it knocked my out when I took it. Three weeks later I was back in Dr. F's office. The pain was growing. I was given a vaginal ultrasound where I again came off the table when they moved over the left ovary. This time Dr. F told me and my boyfriend that I was eating the wrong foods, which explained the constipation I'd been having. As for the pain, well, that was all in my head. She then said that if I were older, she'd suspect endometriosis, but that I was "much too young to worry about that." The Bentyl was refilled and I was sent on my way. I never returned to Dr. F. Instead, I spent the next year and a half learning to deal with the pain and trying to figure out which foods were putting me in so much anguish.
January 1996 I decided to go on Depo-Provera for birth control. Mysteriously, the pain subsided. Only the occasional discomfort would remind me of the pain that had passed. It remained that way for a while. November of that same year I came off Depo due to the mood swings and my mom was convinced having no period was unhealthy for me. If we'd only known the truth. Nine months later, my period returned with the anger of a scorned lover. The pain it brought with it sent me to the emergency room. There I received another pelvic, which I must say was my most painful experience to that point. Three hours, an ultrasound and 2 doctors later, I was told they could find no reason for my pain. I was sent back to work. Thankfully, the dentist I worked for had a girlfriend that was an Ob/Gyn nurse. She arranged for me to see Dr. W, a local specialist. My appointment was 6 weeks away, so I began to document my symptoms.
August 1997, I finally was finally given a name to my pain, or at least a strong suspicion. I spent almost 5 hours in Dr. W's office that day. Most of that time he spent talking, explaining and drying my tears. His staff was the most wonderful group of women I'd ever met. Two of them had undergone surgery by Dr. W and went on to have children. They were my glimmer of hope and he my medical knight in tropical scrubs. I had my first laperoscopy in September of 1997 and was diagnosed with Stage One Endometriosis. I felt relieved that my war was finally over. Little did I realize it was just the beginning of many battles to come.
The internet soom became my lifeline and my biggest tool in self-education. I began to put the pieces together and the vastness of the disease unfolded. I was amazed at the number of women who reached out to me and made me less afraid. One in particular was Antonia. Yet, as I formed these new bonds I felt another slipping away. Sure enough, 10 days after surgery, my boyfriend of over 3 years walked out of my life, saying he no longer wanted to deal with me being sick. Gee, how lucky he was! I have wished many, many times that I could just throw my arms up in the air and scream out, "I QUIT!." To be able to turn my back on this disease and never think twice about the pain it had caused. Looking back now, it was the best thing. I needed him out of my life so I could begin to heal from more than just the surgery.
Christmas Eve I woke up with the most horrible pain I'd ever known. I felt like I was dying and begged for someone to come put me out of my misery. I laid in bed for hours, gripping my stomach and crying out in pain and frustration that it had returned so soon. I tried taking a hot bath hoping it would ease the pain. Lying in the tub, another wave hit like a freight train. Having just moved into my own place, there was no help around, it was one of my loneliest moments. For about 20 minutes I crawled from the tub to my phone, less than 30 feet away. I got ahold of my mom and begged for someone to come get me. I spent the next 2 days heavily medicated just so I could spend the holiday out of bed and with my family.
The pain continued to get worse over the next several months. In May of 1998 I met Pietro (Pito) and suddenly I wasn't alone in my battles. Pito, like many people, had never heard of endometriosis before he met me. But soon he was asking questions and looking up even more on the internet to learn ways to help. I remember the first time the pain was pretty bad around Pito. We were at his place and I excused myself to go lie down for a while. Within minutes, he was by my side trying to ease the pain somehow. No matter how much I begged to be left alone or how hard I tried to push him away, he continued to hold me close. He stayed by my side the entire night, comforting, rocking and listening to my anger and frustration. I knew at that moment he was something special. No one else had ever done that for me, no one else had ever cared enough to take it all on like he did.
A change in jobs and insurance kept me from seeing a doctor again until November of 1998, after another trip to our local emergency room. On November 20th, I saw Dr. J who immediately scheduled me for another laperoscopy. Three days before Christmas, with Pito and my mom by my side, I was wheeled into the OR. Dr. J held my hand and reassured me that everything was going to be okay as I drifted off to dreamland. He found a few new areas of endo, but the major problem came from my bowel being attached to the back of my uterus. That explained the sudden pain before and during bowel movements, and the bleeding that accompanied them.
Recovery from this surgery was more difficult that the first. I depended on Pito for everything. He washed my hair, applied my makeup, gave me baths, and dressed me for 10 days. Everytime I had to change positions at all, I needed his help. I don't know what I would have done without Pito in my life.
In March of this year, the old familiar pain slowly started to return. Week by week it was getting stronger and I knew that I had to start preparing for the times I'd be unable to get out of bed again. The worst thing was I had just started a new job after being fired from a previous one for days missed from endo and migranes. Now I was facing the same situation with a new employer. By May, there were days of pretty bad pain, but I knew it was going to get much worse. I was right. A week before Memorial Day I found myself in the ER yet again. I knew they were going to tell me it was pain from endo, but the pain was unbearable and I needed help to make it through. The doctor was very understanding, but the nurse was a different story. She walked into the room at one point and I was crying. She asked if I was crying from the pain or if I was "just emotional." My poor boyfriend had never seen this kind of treatment towards me because of endo and he was amazed that she had actually had the nerve to ask that. He now has a better understanding of how we are treated like mental patients at times. The pain subsided for a few weeks, but in the start of July of this year I spent a week in bed and went back to the ER for another bout with extreme pain. This time the staff was wonderful and the doctor told me she felt the endo was spreading. Great, just what I wanted to hear!
For a year and a half I continued taking Depo as my hormone therapy with few problems and remained pain-free for the most part. However, after reading numerous stories about ovulation never returning in some women after taking Depo, we decided to switch back to birth control pills. First we tried Ortho-Tricyclene until I heard about triphasic pills not being good for women with endo due to the flucuation of hormone levels throughout the cycle. Now I am taking Nordette continuously and other then my breast being extremely sore I seem to be tolerating these pretty well. In July the dreaded period returned and I was amazed at how intensly strong the pain was and how poorly I dealt with it returning. Being out of severe pain for almost a year and a half made me forget all the coping skills I had learned, not to mention that emotionally I felt betrayed by my body. A second visit to the ER the first week in July brought back all the horrible realities of this disease and I realized something had to be done soon. I could not continue to live my life in this much pain and keep some level of sanity so we scheduled lap #3 for August 8th.
Surgery went as well as could be expected and recovery has been slow, but not as bad as it was in December of 1998. Dr. J found several large areas of endo that was excised
and even more areas that were ablated. There were a few new areas where endo had attacked. My bladder and both ovaries are now involved in this battle. I was also diagnosed with Pelvic Vascular Congestion Syndrome (PCS) which is basically varicose veins behind my uterus. Dr. J recommends staying on Nordette continuously and taking Anaprox three times a day for this, but I’m not really satisfied with this answer, so I am currently exploring other options. I’ve recently contacted a vascular surgeon concerning the PCS and am sending my medical records to Atlanta, Georgia to The Center for Endometriosis Care in the
next week or so.
I have also recently starting reading Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon. I must say that this is one of the most informative books I have ever read on endo. I explains things that no other book has even touched and I feel that I have a better understanding of the disease that plagues me, and
I’m just getting started. I am hoping to make some significant dietary changes once I finish the book and absorb all that it offers. There is a wealth of information in this book and I
highly recommend it to anyone with endometriosis.
Post-operatively I am still having some cramping daily and pain down in the midline area. The bowel problems aren’t completely resolved and we are still having occasional
pain with intercourse but are learning to adjust. All in all, I am feeling much better than before surgery, but still have a long haul ahead of me. Hopefully I will find what works for
my body and be pain-free for a long while. Until then, I will continue to battle this disease every way I can through education, support and research.
Pito and I have now been together for over 2 years and are going strong. He is the foundation in my life; holding me above the river of doubt and keeping me sane when things get crazy. He continues to learn all he can about this disease and is always there to hold my through the rough days. Pito has taken on much of the housework when I've been unable and stretched his paycheck to cover my bills when I lost my job due to endo. I never imagined anyone would be willing to stick around once they saw the true face of this beast, but he has done that and so much more. Just when I thought things couldn't get any better with him, he surprises me once more. While preparing his taxes, Pito hands me a receipt for a donation he made in my honor, it was to the Endometriosis Association. His love and support continue to amaze me. He is my Angel; for him I am eternally grateful.