I have arrived. The time that I have been dreading for seven years has come. This period in my life that I have been pretending would never be if I will it away. Living in a fantasy world. Thinking that maybe, just maybe I wouldn't get sick again or maybe even end up pregnant. Each month convincing myself that the cyst symptoms might actually be a miracle baby! Of course it never happened. No doctor has ever given me any hope that it would. That didn't stop me from believing...there's a Journey song there! After my stage IV endo diagnosis, I lost my right tube sometime that same year. No one knows why! Doctors don't like the idea of "blaming" one thing or another. I had many abscesses following my surgery in 2006. Most of them were drained with a really big needle via guided CT Scan. I had fever and infection for days before the abscesses were identified. I also had aggressive endo. No one knew for sure, and at that point it didn't matter.
None of it matters at all really. On to the next stage of life. Preparing for my hysterectomy. I'm very pleased with my surgeon's cautious nature. We sat down to talk several weeks ago before the exam. He already knew what we were up against, my gyn had sent him 33 pages of records. *(I regret not having kept my own records. If you are beginning the endometriosis life, get yourself a thick binder. Request copies of every ultrasound, surgery pictures, tests. Keep good records. I promise you, when you finally need them, you'll be too exhausted to recreate years worth of records.)
I have homework! There are several pieces of data my surgeon wants in his hands to prepare for the hysterectomy. I'm calling it a reconnaissance mission I've already completed a pelvic and an abdominal MRI. The MRI was requested to look for an abnormalities on the uterus and bladder. Endo cannot be seen on any tests, but if it has invaded or damaged an organ, that damage may be seen. I've already visited my family doctor. For someone so sick, I'm clinically healthy! EKG, chest X-ray and blood work were all good. I'll have a colonoscopy in two weeks to make sure the endo has not invaded the wall of my bowel. And on August 14, my big sister's birthday, I'll have diagnostic laparoscopy. He plans to examine the condition of my bladder (cystoscopy) and get a visual of the colon, uterus, peritoneum...basically recon mission in my abdomen. I admire his careful nature. I'm thankful that he's humble. I feel like I'm in good hands.
After August 14, I imagine I'll have some time to heal and get strong. As I attempted to schedule this first surgery, the surgeon's schedule was booked out more than a month. I suspect I'll have a follow-up appointment at which point I'll schedule the "big one". In this perfect world where I think I can control something, I'd like to plan my surgery for October 1! Then the waiting begins, who knows if I'll sleep between now and then!
Thursday, July 25, 2013
Tuesday, July 23, 2013
Lately...
I had a glowing review at my ultrasound in March. I turned 35 in April. That must be what happened. My next period was painful. This was a new kind of painful, or rather an old kind of painful. There was pain in my tailbone and radiating from my left hip. After the period passed and the pain didn't, I visited a new chiropractor. His "big picture" treatment was very inspiring. My pelvis had tilted, likely in response to pain. I felt great! I felt taller!
It didn't last long. Soon I was having abdominal pain, if you can call it pain. Really it felt like every organ in my lower abdomen was angry. Next came the chills. This wasn't the first time this angry abdomen had presented with a fever. Several years ago I visited a reputable massage therapist that worked in freeing scar tissue. After the first visit, consisting of some abdominal, tailbone and hip work, I had several days of aching, high fever and chills. This felt like that and has happened a few times over the last few years.
And so it began...my current battery of tests and painful days. I had a CT Scan to rule out appendicitis. The next day my fever hit 102.6*. My family doctor ordered me to the ER. I spent June 13, 14 and 15 admitted for a "suspected" tubo-ovarian abscess. Many IV antibiotics and one for the road, there is no way anything could survive that cocktail! I didn't feel bad while on the antibiotics ~ 12 days.
The day after the antibiotics ended, the burning pain in my low back began. It worsened each day. By Monday, day 4, I made an appointment with a doctor at my gyn's office. My scheduled follow-up from the hospital stay wasn't until Wednesday. I hurt so bad I couldn't wait. I've peed in many cups during this episode. Today it was painful. Not a burning when I pee feeling, but the same angry abdomen pain. Still, it wasn't obviously gyn related. Since everything "seemed" fine upon examination, I was sent home with muscle relaxers and pain medicine and instructed to visit the chiropractor again. Also on Monday via ultrasound it was very clear that I never had a tubo-ovarian abscess. There were no remnants of it. The chiropractor was scheduled for the next day but it wasn't to be. I couldn't pee. Not only did it hurt, but I could barely make it happen. Another visit to my gyn's office. A different doctor (Dr. Naymick) this time mercifully catheterized me to remove 500 cc's of urine. This examination was bad. It was tears running down your face, horrid pain, crying and hoping for it to end, doctor apologizing, rearranging cervix, the endometriosis seems to have invaded the vagina, nurse grabbing tissues, "the time has come" no good very bad kind of bad. He gave me a pain shot in the hip, compassionately wiped a booger off of my nose and referred me to a surgeon. My mom and dad came to get me. I waited in the parking lot, in my car. I collapsed into their arms out of pain, devastation, exhaustion and fear. This is only the beginning!
It didn't last long. Soon I was having abdominal pain, if you can call it pain. Really it felt like every organ in my lower abdomen was angry. Next came the chills. This wasn't the first time this angry abdomen had presented with a fever. Several years ago I visited a reputable massage therapist that worked in freeing scar tissue. After the first visit, consisting of some abdominal, tailbone and hip work, I had several days of aching, high fever and chills. This felt like that and has happened a few times over the last few years.
And so it began...my current battery of tests and painful days. I had a CT Scan to rule out appendicitis. The next day my fever hit 102.6*. My family doctor ordered me to the ER. I spent June 13, 14 and 15 admitted for a "suspected" tubo-ovarian abscess. Many IV antibiotics and one for the road, there is no way anything could survive that cocktail! I didn't feel bad while on the antibiotics ~ 12 days.
The day after the antibiotics ended, the burning pain in my low back began. It worsened each day. By Monday, day 4, I made an appointment with a doctor at my gyn's office. My scheduled follow-up from the hospital stay wasn't until Wednesday. I hurt so bad I couldn't wait. I've peed in many cups during this episode. Today it was painful. Not a burning when I pee feeling, but the same angry abdomen pain. Still, it wasn't obviously gyn related. Since everything "seemed" fine upon examination, I was sent home with muscle relaxers and pain medicine and instructed to visit the chiropractor again. Also on Monday via ultrasound it was very clear that I never had a tubo-ovarian abscess. There were no remnants of it. The chiropractor was scheduled for the next day but it wasn't to be. I couldn't pee. Not only did it hurt, but I could barely make it happen. Another visit to my gyn's office. A different doctor (Dr. Naymick) this time mercifully catheterized me to remove 500 cc's of urine. This examination was bad. It was tears running down your face, horrid pain, crying and hoping for it to end, doctor apologizing, rearranging cervix, the endometriosis seems to have invaded the vagina, nurse grabbing tissues, "the time has come" no good very bad kind of bad. He gave me a pain shot in the hip, compassionately wiped a booger off of my nose and referred me to a surgeon. My mom and dad came to get me. I waited in the parking lot, in my car. I collapsed into their arms out of pain, devastation, exhaustion and fear. This is only the beginning!
Saturday, July 20, 2013
The beginning
Today was good day! Yesterday too, actually!
I'm feeling whole for the first time in over a month. There's still a sadness though. Knowing that in just a few short weeks, our lives will be turned upside down. Pain and struggle will be an everyday reality. I'm looking hopefully to the future. A future of no painful periods. No periods. At 35, I should have at least 15 more years of them. But, I learned a few weeks ago that endometriosis has won. It was a hard fought battle, but I have no choice but to call it.
It started more than 20 years ago. At 11 years old, painful heavy periods were my reality. I thought I must be a wimp. I sometimes think that my terrible memory is a a safety mechanism. At 18 years old, the bouts of pain were not regular but were unbearable. When they would hit, the doctors would say, "stomach flu" or "std" (um, no) or "food poisoning". My health teacher told me about endometriosis. She said to pay close attention to my cycles. This pain may be related to ovulation. She knew. I believed. That wasn't enough to make a doctor see it.
About 13 years ago, I stopped birth control pills. Slowly the periods got worse. Month after month more symptoms appeared. I'd have heavy bleeding, clotting, painful and bloody bowel movements, low back pain that kept me up all night. Doctors were not interested. In 2004, I was able to convince my gyn that I had most of the symptoms of endometriosis. I was immediately referred to a specialist. The details are fuzzy (selective memory loss). In April of 2005, nine years after the first debilitating ovulation pain, I had my first laparoscopic surgery. Endometriosis is confirmed! Stage IV, visible to the naked eye and a case that the doctor claimed she would encounter only once in a career. Still not sure what that means exactly!
I'm feeling whole for the first time in over a month. There's still a sadness though. Knowing that in just a few short weeks, our lives will be turned upside down. Pain and struggle will be an everyday reality. I'm looking hopefully to the future. A future of no painful periods. No periods. At 35, I should have at least 15 more years of them. But, I learned a few weeks ago that endometriosis has won. It was a hard fought battle, but I have no choice but to call it.
It started more than 20 years ago. At 11 years old, painful heavy periods were my reality. I thought I must be a wimp. I sometimes think that my terrible memory is a a safety mechanism. At 18 years old, the bouts of pain were not regular but were unbearable. When they would hit, the doctors would say, "stomach flu" or "std" (um, no) or "food poisoning". My health teacher told me about endometriosis. She said to pay close attention to my cycles. This pain may be related to ovulation. She knew. I believed. That wasn't enough to make a doctor see it.
About 13 years ago, I stopped birth control pills. Slowly the periods got worse. Month after month more symptoms appeared. I'd have heavy bleeding, clotting, painful and bloody bowel movements, low back pain that kept me up all night. Doctors were not interested. In 2004, I was able to convince my gyn that I had most of the symptoms of endometriosis. I was immediately referred to a specialist. The details are fuzzy (selective memory loss). In April of 2005, nine years after the first debilitating ovulation pain, I had my first laparoscopic surgery. Endometriosis is confirmed! Stage IV, visible to the naked eye and a case that the doctor claimed she would encounter only once in a career. Still not sure what that means exactly!
I spent the next six months getting injections of Lupron Depo. The chemically induced menopause was manageable. I had some hot flashes. Emotionally I felt like a zombie. Sometimes I felt like I was sitting across the room watching my life go by, like an out of body experience! I'm not sure how much of that my family knew at the time. I had become quite the little actress over the years.
The Lupron served a purpose. Much of the endometriosis had dried up. A small nodule remained in the cul-de-sac (the small area between the uterus and the rectum). Laparoscopy #2 followed in January of 2006. The surgeon quickly realized that the nodule would require a more intensive surgery.
This is where my story got intense! In March of 2006 a gynecological oncologist attempted to separate the nodule that connected my uterus and my colon. My colon perforated. Introduce gastrointestinal surgeon. After removing 6" of the sigmoid colon, I was fortunate, thankful, amazed that I had walked away from the surgery without a colostomy but not without infections and intestinal challenges.
The following years flew by! I experimented with Depo Provera and Pycnogenol. I developed severe eczema on my hands. I was diagnosed with an endometrial cyst in the cul-de-sac. I continued to monitor for simple and complex ovarian cysts. I knew that it was only a matter of time before the time bomb would go off!
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