Sunday, August 31, 2008
End of Summer Vacay
I decided to take a last minute mini-trip out to the Shuswap Lake to visit my sister and baby niece tomorrow, who are out from Calgary. I didn't get a vacation this summer because I have been too sick, so I am excited, even though it is just overnight!
Friday, August 29, 2008
CT Scans and Cheekbones
I had my CT scan on Tuesday, it was a lot easier than I thought- I didn't have to drink any barium, which was great! The iodine contrast IV made me feel kind of sick, but it went away later that day. I still don't know my results, they won't tell me what they saw, I have to see my doctor first. On a happier note, I booked a consultation with my plastic surgeon in Calgary for a cheek augmentation (malar implants). When one is going through all of this ugly medical stuff, it is always nice to have something pretty to look forward to.
Tuesday, August 19, 2008
CT Postponed
Today I got a call from the hospital saying their CT is down, so now my CT is postponed until next Tuesday. So frustrating!
Sunday, August 17, 2008
Abdominal Mass
So for the past couple of years, my pain has been steadily increasing. About 1 month ago, I got really, really sick all of a sudden, and realized I had a hard mass in my right abdomen, just slightly above and lateral to my belly button. I had gone into work, and was sent home because I was so unwell. There was no way I would be able to see my family doctor, so I went to a walk in clinic near my house. Once I got there, she did a brief exam and sent me straight to the nearest ER, thinking I had an acute case of appendicitis. Once there, instead of waiting for hours before seeing a doctor, I had a private room, changed into a gown, and was seeing a doctor within 20 minutes.
After the med student had made his assessment, his supervising doctor came in to check me again. She was dead set that I must have PID (I don't, and I knew that, but she didn't want to listen), gave me the most painful internal exam possible, and left. The lab tech came in for 14 (yes, I counted) vials of blood, and a nurse came in regularly to test my vitals. After waiting for the blood work to come back, they realized that I did not have appendicitis, and was given a requisition for an ultrasound. She had no idea what was wrong with me. So I went home for the night.
The following morning, I got a call from the radiology department at the hospital to come in for an ultrasound. Usually my ultrasounds will take 15-20 minutes, tops, this one took an hour and a half (of scanning). After the U/S tech got all of his views of the mass, he left to show the attending radiologist. He came in, to "have a second look", and more and more doctors started to trickle into the room to look at me like a lion in the zoo. Ever see the Grey's Anatomy with the "pregnant" man with the teratoma? It was kind of like that. I was starting to freak out a bit because I was starting to think I had cancer or something. Finally, they decided that I have a large endometrioma (a cyst full of endometriosis) growing inside my abdominal muscle wall, which is quite rare. They think that some endo had been transferred in a previous lap. Usually if endometrial tissue gets transferred surgically, it is direct uterine endometrial implantation during a C-section. So what that means is that I am kind of a medical freak.
So I got back into see my endo specialist about 2 weeks after my hospital trip. She wants more views of the mass, and has me going in for a CT scan this coming Wednesday. The bad news is that this will likely need to be removed surgically, and it can't be done laparoscopically, so it will be a much more diffucult recovery and I will have a big scar. I am hoping that it will be possible for her to remove the mass and laparoscopically remove the typical pelvic endo all in one go. We will have to see what the CT shows on Wednesday.
After the med student had made his assessment, his supervising doctor came in to check me again. She was dead set that I must have PID (I don't, and I knew that, but she didn't want to listen), gave me the most painful internal exam possible, and left. The lab tech came in for 14 (yes, I counted) vials of blood, and a nurse came in regularly to test my vitals. After waiting for the blood work to come back, they realized that I did not have appendicitis, and was given a requisition for an ultrasound. She had no idea what was wrong with me. So I went home for the night.
The following morning, I got a call from the radiology department at the hospital to come in for an ultrasound. Usually my ultrasounds will take 15-20 minutes, tops, this one took an hour and a half (of scanning). After the U/S tech got all of his views of the mass, he left to show the attending radiologist. He came in, to "have a second look", and more and more doctors started to trickle into the room to look at me like a lion in the zoo. Ever see the Grey's Anatomy with the "pregnant" man with the teratoma? It was kind of like that. I was starting to freak out a bit because I was starting to think I had cancer or something. Finally, they decided that I have a large endometrioma (a cyst full of endometriosis) growing inside my abdominal muscle wall, which is quite rare. They think that some endo had been transferred in a previous lap. Usually if endometrial tissue gets transferred surgically, it is direct uterine endometrial implantation during a C-section. So what that means is that I am kind of a medical freak.
So I got back into see my endo specialist about 2 weeks after my hospital trip. She wants more views of the mass, and has me going in for a CT scan this coming Wednesday. The bad news is that this will likely need to be removed surgically, and it can't be done laparoscopically, so it will be a much more diffucult recovery and I will have a big scar. I am hoping that it will be possible for her to remove the mass and laparoscopically remove the typical pelvic endo all in one go. We will have to see what the CT shows on Wednesday.
Saturday, August 16, 2008
A Little Background on Me
I am a very normal 25 year old in a lot of ways. I love hanging out with my friends, shoe shopping, am busy with work, school and looking for Mr. Right. However I am dealing with a disease that causes me chronic pelvic/abdominal pain, severe fatigue, nausea, and a 30-40% chance of infertility. This disease affects an estimated 5-10% of women, yet it takes on average 10 years to be diagnosed. Common treatments include frequent surgeries, strong hormonal medications that induce an artificial menopause or masculinization, and castration. Not a very good list of options, to say the least! Symptoms range from severe menstrual pain, chronic pelvic pain, infertility, bowel pain, urinary pain, heavy bleeding, fatigue, nausea, pain with sex, internal bleeding, and immune problems. There is no cure, and very little research. What is it? Endometriosis.
Endometriosis occurs when the lining if the uterus (the endometrium) grows outside the uterus. This tissue (or implant) responds to hormones the way normal endometrial tissue does- it builds, and bleeds. The major problem with this tissue bleeding is that the blood has no where to go, so it starts to break down internally, provoking a huge inflammatory response that causes excruciating pain and internal scarring that can lead to pelvic/abdominal organs forming adhesions and literally gluing themselves together. This happens every month, so no wonder why us with "endo" are in so much pain!
One would think that being in this level of pain would be an alarming symptom for doctors to find in their patients, but this is often not the case. Doctors often play down the pain, saying we must be exaggerating our symptoms. They tell us it is normal, ask if we have tried Advil (are you fucking kidding me?), suggest it is psychosomatic or due to a "maladjustment with femininity"(the only maladjustment I have is that I am in pain!) and try to prescribe antidepressants medications. Or they just ignore you altogether. It is almost shocking to find a doctor who will listen and treat this disease appropriately. However, the ones who do are GOLD!
My first period was horrendous. I was in so much pain I was passing out and throwing up. This level of pain continued throughout high school until I started the pill in grade 12. It helped a bit, but I was still out of commission a shocking amount. When I was 19, I moved away to go to school. My symptoms only begin to intensify to the point where I was in so much pain I could not move. I was so nauseated and exhausted all the time, that I began to miss a lot of school. My new family doctor strongly suspected endo, and referred my to one of the top endo doctors in the country. This doctor wanted me to undergo a diagnostic/operative laparoscopic excision with biopsy, a surgical procedure, to give a definitive diagnosis. As I waited for surgery, my health continued to deteriorate to the point where I was expelled from school due my illness. I physically was in too much pain to get out of bed. I had my laparoscopy (lap) 2 weeks later in May of 2003.
My doctor did indeed find endo, not a lot of it, and it looked like nothing in the pictures she took, but it was very metabolically active tissue that can cause massive amounts of pain. Recovery was pretty easy, and I was doing pretty well for about a year. Symptoms slowly began to get worse, and I had a second lap in November 2004. Recovery was more difficult this time around. Since then I have learned so much about this disease. I started nutritional therapy, acupuncture, traditional Chinese medicine, among other things, and was doing quite well for a long time. Symptoms have been slowly creeping back up on me, to the point where I am today, facing endo surgery #3.
Endometriosis occurs when the lining if the uterus (the endometrium) grows outside the uterus. This tissue (or implant) responds to hormones the way normal endometrial tissue does- it builds, and bleeds. The major problem with this tissue bleeding is that the blood has no where to go, so it starts to break down internally, provoking a huge inflammatory response that causes excruciating pain and internal scarring that can lead to pelvic/abdominal organs forming adhesions and literally gluing themselves together. This happens every month, so no wonder why us with "endo" are in so much pain!
One would think that being in this level of pain would be an alarming symptom for doctors to find in their patients, but this is often not the case. Doctors often play down the pain, saying we must be exaggerating our symptoms. They tell us it is normal, ask if we have tried Advil (are you fucking kidding me?), suggest it is psychosomatic or due to a "maladjustment with femininity"(the only maladjustment I have is that I am in pain!) and try to prescribe antidepressants medications. Or they just ignore you altogether. It is almost shocking to find a doctor who will listen and treat this disease appropriately. However, the ones who do are GOLD!
My first period was horrendous. I was in so much pain I was passing out and throwing up. This level of pain continued throughout high school until I started the pill in grade 12. It helped a bit, but I was still out of commission a shocking amount. When I was 19, I moved away to go to school. My symptoms only begin to intensify to the point where I was in so much pain I could not move. I was so nauseated and exhausted all the time, that I began to miss a lot of school. My new family doctor strongly suspected endo, and referred my to one of the top endo doctors in the country. This doctor wanted me to undergo a diagnostic/operative laparoscopic excision with biopsy, a surgical procedure, to give a definitive diagnosis. As I waited for surgery, my health continued to deteriorate to the point where I was expelled from school due my illness. I physically was in too much pain to get out of bed. I had my laparoscopy (lap) 2 weeks later in May of 2003.
My doctor did indeed find endo, not a lot of it, and it looked like nothing in the pictures she took, but it was very metabolically active tissue that can cause massive amounts of pain. Recovery was pretty easy, and I was doing pretty well for about a year. Symptoms slowly began to get worse, and I had a second lap in November 2004. Recovery was more difficult this time around. Since then I have learned so much about this disease. I started nutritional therapy, acupuncture, traditional Chinese medicine, among other things, and was doing quite well for a long time. Symptoms have been slowly creeping back up on me, to the point where I am today, facing endo surgery #3.
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