It's taken me quite awhile to try and figure out how to introduce My Journal to this website. Over the past year or so, as my fibroids progressed in size and I continued to resist hysterectomy, I began taking notes. Jotting down thoughts. Writing letters to my children and my husband and tucking them away.
I don't really have a Journal, so to speak. Not at all, unfortunately. If something crossed my mind that I wanted to write down, I would grab just about any kind of paper available and start scribbling. Consequently, My Journal is actually a pile of paper, computer notes, and email that has simply accumulated. Over time, the stack has become unruly and isn't in any particular order. I did, at least, date the scraps of paper at the top of each one as I went along.
So, piecing together this online version has been difficult. Nonetheless, I've decided to go ahead and put up the elements that I've entered so far. There are many, many more pages to come. As I dig through the pile I will be adding things to dates past, present, and future (as the days go by from here on out) until all of my notes have been entered. There is generally an entry for every single day from October 1998 forward. If you see blank entries today, return in a week or so and they will no doubt be filled.
As a precursor to all of this, I've been trying to find a way to explain "what the hell happened to me" along the way during the past 14 years. Then I received the following question in my email:
>Have you come across any information linking diet to the growth of fibroids? I have heard that caffeine and sugar can contribute to this. What are your thoughts?
I'm thankful for this question because it helps me to reflect on my physical history. I respond with the following:
Yes and no. Dr. John Lee, and Dr. Jesse Hanley -- both endocrinologists -- have recently published the book "What your Doctor may NOT tell you about premenopause" which discusses the cyclical nature of hormonal interactions in an individual's body and the impact of stress, diet, and environmental phytoestrogens/phytohormones on the overall "balance" of the cycle. Although much of their suppositions are simply based on their patient experiences (30+ years for Dr. Lee--this is his 2nd book on the subject) along with their knowledge of endocrinology, much of what they've written "rings true" (for me and many women I've corresponded with) and deserves closer attention and corresponding clinical trials or detailed research regarding health history of women with fibroids.
They specifically address pregnenolone, progesterone, androstenedione, estrogen, testosterone, DHEA, and the cortisols and diagram out the molecular structure and "signal" paths that occur in the body. They write about interruptions that occur to the "signal" and how that can cause excessive amounts of estrogen or progesterone to be released in the body--hence, triggering the growth of fibroids along with a wide variety of other potential conditions. They specifically recommend avoiding caffeine, sugar, dairy products and feed lot meats that come from animals that have been given growth hormones. In addition, they suggest avoidance of a wide variety of solvents (as solvents accumulate in the brain, myelin, and fat) and are extremely disruptive to the central nervous system--potentially interfering with the "signal" flow of hormones. They go into specific details of deficits/overproduction of each hormone and how it occurs and what the body does in its own defense of the imbalances.
You ask a seemingly simple question--with no real answers founded in research. Yes, researchers believe there is a link. Yes, possibly caffeine and sugar are involved. But how? Here's how I theorize the growth of my fibroids in a way that "rings true" for me:
27 years old, working for a semiconductor manufacturer, chemical spill occurs that blows industrial strength n-butyl acetate in my face for 12 solid hours; I complain of the odor but no one can find the spill. After 12 hours, my brain "freezes" (like when you eat cold ice cream too fast); I can't speak, get disoriented, panic, start crying, cause entire facility to evacuate. I, along with 16 other women, am taken to local hospitals where doctors are clueless. . .hazmat team finds chemical spill next to intake duct for fresh air leading to my work station and several others. Meanwhile, my personal physician is stymied by my incoherence and sends me to a neurologist. My memory is seriously impaired. I don't know who the President is. Can't remember much of anything that's asked of me and have trouble remembering names of my own family members and friends. It takes almost 6 months before the "brain freeze" starts to melt. . .and when it does, it's a nightmare of migraines, cold chills, hot sweats, disorientation, etc. Then, I'm "sort of" okay. Only my doctor won't let me work around chemicals anymore and the migraines never really go away. And, I'm definitely not the same person anymore. (BTW, since undergoing UAE I have been relatively "migraine" free--for the first time since 1984--I'd sure like to know why...)
I get pregnant about 9 months after the chemical spill. Miscarriage in 3rd month. Doctor who did research on chemicals I was exposed to tells me that this particular solvent stores up in fat cells and takes awhile to dissipate from the body--if it ever does. He sees the miscarriage as a good thing. Too many high risk scenarios for the birth of a child this close to this kind of exposure. (Note: One other woman who was pregnant at the time of the exposure also miscarried. Yet a 3rd woman, who was pretty far along at the time of the exposure, gave birth--and then lost her son to a brain tumor when he was 3 years old.) I begin gaining weight about this time. No diet change--but definite metabolism change.
I get pregnant again. I go to my regular gyn who diagnoses fibroids along with the pregnancy. She doesn't want to oversee the pregnancy and advises against it. In fact, no ob will take me--too high risk they all say. I finally convince the head of the local hospital's ob/gyn dept to take me in my 7th month. Fibroids continue to grow--but slowly. Slow weight gain continues. Tired all of the time. Begin drinking coffee (never was a coffee drinker before) to help me gain energy. My son enters the world weighing in at nearly 10 pounds after a somewhat difficult birth. He seems healthy.
Years go by and fibroids develop very slowly.
I get pregnant again and never gain a pound--I'm already maxxed out at about 190 and remain that weight throughout the pregnancy and even after the birth of my son.
I begin craving sugar. Not in "normal" quantities--in excessive quantities. I live off of sugar and chocolate for breakfast lunch and dinner. There is no other food group for me. I don't really gain any additional weight--still holding around 190. My fibroids continue to grow and doctors begin to stop talking about hysterectomy and start talking about my mortality if the uterus isn't removed. I can't do it--undergo surgery, that is. Excessive bleeding begins in earnest. Flood city. I read everything I can on the subject and start trying every "alternative" treatment written about. Nothing works until I become a vegetarian. Bleeding returns to normal periods--except for clotting during each monthly period. But, bleeding is controlled the rest of the time. (Note: I gain instant belief in the "estrogen in the meat and dairy supply" theories re: fibroids. However, today I know the difference between vegetarianism's impact on submucosal vs. subserosal fibroids.)
My sinusitis symptomology kicks in and I get deathly ill just about every 2 months. Doctors can't find the source and don't know how to "cure" it. Glands in neck swollen all of the time. Uncontrollable coughing from sinus drainage that never quits. Lose my voice for weeks at a time. Doctors speculate that either adrenals or thyroid has problems--maybe both. Not sure quite what to do. (Both impact overall production of hormones in the body and can wreak havoc on your immune system.) Quite a few drugs later (some of them containing synthetic steriods--which I now know DOES stimulate fibroid growth) and, I was still not "cured" -- (as evidenced by my sinusitis and laryngitis on the day my UAE was performed). Fibroids continue to grow.
A "different" kind of bleeding begins. I know fibroids are huge because the pain is overwhelming from the pressure on the nerves in my back. But, I'm used to the pain and live off of painkillers daily by now. I am, however, concerned about the bleeding--definitely not normal--possibly an indication of cancer. I know it and start looking for a physician. By summer, I'm suicidal. The pain is more than even what painkillers can help. I go to see Dr. Maldonado who expresses outright fear and astonishment for my overall health. She urges me to take action. I do. Pap smear is normal but I don't really trust what's going on with the endometrium or the fibroids (Note: This is the primary reason I didn't protest too loudly the hysteroscopy/laparoscopy that McLucas did, as you'll read about in My Journal. I did insist he do them as a single procedure--but, I didn't really protest too much beyond that other than making him justify why he required them. 14 years is a long time to "ignore" fibroids.)
Now, which came first--the chicken or the egg? Which element(s) played what role(s) in the growth of my fibroids? And, did the solvent exposure even really have anything to do with any of this? How does one find out? To me, it is all related--chemicals, sugar, caffeine, synthetic steroids, etc.--but, which triggered what? While researchers look for a genetic link among family members, I can readily say that no one in my family has ever had fibroids. Cancer--yes. Fibroids--no.
Did I bombard you with enough thoughts? *Sorry.* The women that I've communicated with that have done research in earnest in an effort to piece together their own body's puzzling picture can all relate their own history in a way that links pieces of it together for them. I believe that is precisely how Dr. Lee has come to many of his "conclusions"--too many similarities across too many women to ignore. And, caffeine and sugar are definitely in the picture somewhere. . .
And this is where My Journal truly begins. With the search for information on uterine artery embolization. I've seen 20/20 (or was it Dateline?) and so has my mother. One word is what I write down: embolization. One word that, perhaps, contains an answer, a solution, a lifeline. Because there is no way in hell I am ever going to let a gynecologist cut me open.
My distaste and distrust after all of these years is so strong that I would rather die than undergo surgery via a gynecologist.
Is that logical? Is that reasonable? Maybe not. I don't know. I've always had very strong convictions about many things in this life. And, this is one of them. My gut instinct tells me that I will die if I enter a hospital to have a hysterectomy. I will not survive it. I would rather undergo the slow death I am experiencing now than to give it all away to any gynecologist.
So, I avoid it forever. As a result, this entire website encompasses my journey into the world of medical research and my experiences with UAE. Welcome to My Journal.
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This page last updated Saturday, February 02, 2002