Thursday, July 28, 2011
Monday, July 25, 2011
Today's post is for women with endometriosis that wish to know more about why they have the disease, and those enviable 'normal folk' (ha ha, I know, we've all got our own challenges!) who wish to know why I or others have this disease. If you find this page helpful, you are welcome to use it, but please email me for permission, and do not forget to give credit to the researchers I have acknowledged here.
Endometriosis is hypothesized to be caused by a combination of genetic vulnerability and environmental toxins. A sort of innate combination of bodily defects and immune dysfunction and negative influences of foreign bodies. For non-biology folks, think of it this way. A person is a glass of water, partially filled by their own genetic vulnerabilities (prior problems that make them more likely to experience a disease).
Those with high vulnerability are something like 80% full, while those with low vulnerability are 20% full. The less full cups have fewer innate problems and are more likely not to be overflowed by environmental influences. Environmental toxins, a different fluid, let’s call it orange soda, is added by experiencing exposure. Say everyone experiences about 40% (of their cup’s original volume) of environmental toxins. According to this theory, those with high vulnerability will reach 100%, even overflow, and will have endometriosis. Those with low will only reach 60% (or 50, 70, or whichever % that lies below 100), and not overflow. Make sense? Here, I’ll add in pictures! Look at them!
So what makes up the differences between those people with a 20% full glass and 80% full glass? What the heck did they do to earn that lesser predisposition to this horrible disease? Well, as it's innate qualities that determine the fill of your glass, they didn't do anything to earn it, but they sure do benefit from it. From my understanding, here are some of the negative bodily qualities that 'add more liquid to your vulnerabilities glass' and make endometriosis more likely. First, physical characteristics that make the outflow of menstrual lining more difficult, which increases the likelihood of retrograde menstruation, are linked to endometriosis. Retrograde menstruation is when the contents of menstrual lining flow back and out into the pelvic cavity and is cited at the primary cause of endometriosis (1) . Outflow defects (like a narrow or partially obstructed cervix and heavy menstrual flow) and failure of the immune system to clean up menstrual debris that do not make it out of the body, are linked to increases of endometriosis (2). The important fact here is that although 70-90% of women experience some retrograde menstruation in their lives (3), only about 7% of women develop endometriosis (though the amount of retrograde may vary). I mean, think about it--fallopian tubes (uterine tubes, using the correct term) are not directly attached to ovaries, and are open to the pelvic cavity. If the uterine lining flows up the tubes, it would be easy to escape into the cavity. The immune response is able to clean this debris in most women, preventing it from becoming a problem. So the second important innate characteristic is failure of the immune system to properly clean up the debris.
(Personal note here, although there is disagreement between scientists about endometriosis occurring in higher rates in women with autoimmune diseases, I have both moderate chronic asthma and colitis. My colitis and asthma flare up when I have worse problems with my endometriosis. Hormones have a pretty powerful effect on the body, and I personally believe in a strong link between these three diseases.)
A variety of environmental toxins have been linked to endometriosis. An environmental toxin can be defined as any contaminant that enters an organism or ecosystem that introduces harm or disruption to that system. Some identified toxins that have been linked to endometriosis are stimulants (coffee, amphetamines, and nicotine), xenoestrogens, phthalates (plastics), PCBs, dioxins.
The exact relation of stimulants is complicated, and as I am only a neuropscyhology student with only a years experience in microbiology, the papers were a little beyond my scope (without spending 3 hours each reading them). This is what I gleaned from the papers though. Stimulants affects both the control of growth of the endometrial cells spreading out from the uterine cavity and the behavior of immune cells responsible for their clean up (4). Most importantly, monocytes that help control the spread of migrating tissue are signaled by stimulants. One article I read seemed to indicate that certain macrophages (think of these as the giant garbage eating immune cells that clean up foreign/dangerous/dead tissues) differ in women with/without endometriosis in their levels and activity being affected by stimulants! The take home message from this, without any mumbo-jumbo? Limit your stimulant intake. Do yoga in the morning instead of drinking coffee. Stop smoking if you do. And if you have ADHD, try to either stop adderall/ritalin in favor of behavioral therapy, or try reduce your stimulant treatment by incorporating behavioral therapy.
I will do one more paragraph for the day--trust me, these take quite a while to research and write up! So, what are xenoestrogens, and what do they mean? Xenoestrogens are widespread in the environment and mimic estrogenic signaling. They interfere with proper estrogen function in the body. In the reproductive system, they cause improper and accelerated proliferation (spreading) and growth of endometrial cells (5). Essentially, they mimic estrogen and function by binding at estrogen receptors (parts of cells that are affected/signaled to act by estrogen binding to it) and consequently disrupt the balance and functioning of the endocrine (hormone) system of the body (6). When any balance is upset in the body, it is asking for trouble--in the case of endometriosis, unchecked growth of endometerial tissue outside of the uterus.
What does that mean for us? Well, the take home message is to avoid as much xenoestrogen as possible. According to wikipedia, "Xenoestrogens are "foreign" estrogens often widely used industrial compounds such as PCB, BPA and Phthalates, that have estrogenic effects on a living organism even though they differ chemically from the naturally occurring estrogenic substances internally produced by the endocrine system of the organism." They are found in commericial, non-organic meats, pesticides, cleaners, some lotions/creams--essentially can be found in most commercial products made from (or containing) added artificial chemicals. I will post a couple links to handy lists for either what contains them or how to avoid them. For myself, I cut out red meats (mammal meat, or 'furry friends'), non-organic meats, limited myself to organic produce and groceries as best I could, and am careful with my use of cleaners/lotions. They are difficult to avoid, but it's best to avoid them as much as possible. They are perhaps some of the most dangerous agonists (essentially chemical increasers) of endometriosis around.
To be continued!!
(1) Sakura, Y., Masaki, T., Sudo, K, Nomura, M., and Shino, A. (1990). Histological studies on the therapeutic effect of sustained-release microspheres of a potent LHRH agonist (leuprorelin acetate) in an experimental endometriosis model in rats. Endocrinol. Jpn. 37, 719–729.
(2) Olive, D. L., and Henderson, D. Y. (1987). Endometriosis and mullerian anomalies. Obstet. Gynecol. 69, 412–415.
(3) Halme, J., Hammond, M. G., Hulka, J. F., Raj, S. G., and Talbert, L. M. (1984). Retrograde menstruation in healthy women and in patients with endometriosis. Obstet. Gynecol. 64, 151–154.
(4) Wu MH, Sun HS, Lin CC, Hsiao KY, Chuang PC, Pan HA, Tsai SJ 2002 Distinct mechanisms regulate cyclooxygenase-1 and -2 in peritoneal macrophages of women with and without endometriosis. Mol Hum Reprod 8:1103–1110
(5) Steinmetz R, Mitchner NA, Grant A, Allen DL, Bigsby RM, Ben-Jonathan N. The xenoestrogen bisphenol A induces growth, differentiation, and c-fos gene expression in the female reproductive tract. Endocrinology. 1998;139:2741–2747.
(6) Sonnenschein C, Soto AM. An updated review of environmental estrogen and androgen mimics and antagonists. J Steroid Biochem Mol Biol. 1998;65:143–150.
Thursday, July 21, 2011
First off, for those that don't know, Lupron is a hormone therapy drug that is used to treat men with prostate cancer and women with severe endometriosis. The drug is known to have some pretty awful side effects, and it's said that many stop mid-therapy because the side effects are worse than what it's treating. I can somewhat attest to that--while the pains it causes are not worse than my pre-surgery inflammation, the cramping it has caused is as bad as my immediate post-surgery ones. It puts women into a temporary, artificial and messed-up menopause, causes back pain, forgetfulness, moodiness, depression, cramping, severe nausea, and many many more fun, fun side effects.
However, depleting my body of estrogen (which my body makes WAY too much of--I think that is linked to why I bruise from being poked) is the only way to kill this awful awful endomestriosis that has burrowed into my tissues. The cells are so dispersed and numerous that the doctor could only lesion the large implants--the rest was untouchable, without removing my organs. The doctor gave me two options: try and get pregnant (who knows if that's even possible now, let alone feasible) or go on Lupron.
I got my second injection yesterday. Those syringe and needles are about the size of my forearm--not only are they huge, but do you know where they go? On my BUM! It's a stinging solution and it's hard to keep still when they inject it. The only more painful shot I have gotten was an antibiotic I had shot in my bum for pneumonia, and it wasn't much more painful. This one has made it hard to sit down last night, and I'm still sore today! Ouch!
The more troublesome problem though, besides the pain, cramping, dizziness, etc. etc., is the nausea. Because of nausea, I have lost almost 10 pounds in 4 1/2 weeks. When I had my urine tested yesterday, the doc informed me that my body is quite literally starving, and I need to find a way to choke down my food. Easier said than done. I really do hate eating lately. Over half the time I eat, I feel sick afterwards. Not to mention the Lupron might be agitating my colitis. With stuff running through or racing back up, how am I supposed to gain weight? When the medical staff told me to drink shakes with protein powder, I felt like shouting back, "No, YOU DRINK THE POWDER!!" ha.
However... for those considering Lupron as a treatment option, who actually need it, I can say it's worth it. No matter how miserable I may feel right now, I can't believe I may actually be in a state, in several months, where I don't feel the endometriosis inside of me. When you're sick and in pain for a long long time, you grow accustomed to it. Not in a way where you don't feel it, but you train yourself to ignore it. But it still hurts, and it still affects you in many ways. This drug, even if it makes me feel truly horrible, even if I'm running risks of breast cancer down the road, will actually make it possible for me to get out of bed every day, and not be in too much pain to move.
My only other option was having a hysterectomy. At 22. Not ideal, especially because I can't admit defeat in having kids someday until I actually try.
Lupron is great because it allows you to actually wage war on the disease inside you. It's not something you passively take--you suffer for it, and you won't like it. But because of that suffering, it actually kind of makes me feel like I'm aggressively defying my organ's war on me, I'm done taking the crap my body has made me suffer and I'm taking this endometriosis down. Forgive my language, but I'm ready to kick this diseases ass, even if it means I will feel like I'm going crazy and have the stomach flu every day. Even if it makes the endometriosis pains worse the first several weeks, even if it makes me unable to get out of bed till noon some days, I'm taking it down!
Lupron takes at least seven months, and (following up with birth control) it can keep the disease at bay for at least 5 years. Seven months of this, I can handle. The rest of my life with endometriosis pains, scars, and adhesions? No thanks.
Update, 2012: It would have been worth it. Had it worked. I wanted so badly to believe it had and my positive attitude created a placebo effect. But I was wrong. And I wish I had never taken it. I have unforeseen consequences to pay.
Tuesday, July 19, 2011
This past winter semester, I got pneumonia in January. I was tired and drowning in my own lungs at times, and was coughing up a storm! I missed a lot of classes but somehow managed to remain in all of them, except for ice hockey. That I had to drop--as an asthmatic, with pneumonia in winter, in a cold place like Utah, I had enough at risk without moving around like crazy in a cold ice rink. I had to rest and take it as easy as possible.
In early March, I finally started to fully recuperate from the pneumonia (the bacteria cleared out from heavy antibiotics, but the swelling in the lungs persisted for quite a while). I started training for a triathlon. I planned doing one to raise money for a charity called Equality Now. They fight for women's rights and protections internationally, helping to end such practices like FGM, abuse, rape, etc. etc.. It's a great charity and I wanted to raise money to contribute. I trained like mad for about 10 days. I would bike about 20 miles, run around 5 miles, swim a mile--I'd do two exercises a day. I was quickly toning and felt amazing! The exercise gave me extra energy to resume my classes, I was attending regularly, and I felt illness was behind me. Having pneumonia was really hard and getting healthy was great.
However, one day, while sitting in my philosophy class, if felt an odd 'pop' sensation in my belly. That felt strange. What was that? Within minutes I was in total agony. Cramping and burning like mad. When I began to cry, I took a pain killer and made an urgent appointment at the women's clinic. Somehow I knew it was a cyst. I missed classes until my appointment. I went to the ER the Friday--I ruptured a cyst and had a moderate amount of fluid in my belly. I kept missing classes. Then I started having intestinal cramping and pains. My parents flew me home April 15th, when the pains and internal chaos made it impossible to either leave bed or the toilet. It was a week before finals, and I had to drop out.
The consequences of my decision had more implications than I imagined. My doctors, with no idea of how unhealthy I was, told me I'd probably be back to school in a week. In a few weeks. In a month. Two months. Three months. Because of the lack of information, I merely dropped out of my spring term rather than deferring my enrollment and my scholarship. Spring and Summer term are grouped into a single semester scholarship-wise, and you cannot split the funds up. As I had an apartment at school and it would be too complicated to go back to school in the fall, I merely decided I'd take a heavier load in the summer term so I could still use my scholarship and not need to stay through the Fall.
However, because my colitis flare prevented my surgery for several weeks, I did not get my operation until about 10 days before summer term started. When I returned, weak and still sore and ill, I couldn't do my classes. But I had to or else that meant I had to stay an extra semester to graduate. On top of that, I still had incompletes and independent credits to finish. My schooling was an absolute mess and my body wasn't cooperating. I tried to force it to perform for summer term, but it wouldn't. I dropped out again.
But it occurred to me, because I dropped out both times before tuition deadlines, shouldn't I be able to keep my scholarship? Why hadn't it been refunded to me? I spent the last several weeks finding out why. I had to write essays, get physician verifications, and essentially document my entire illness to probably a dozen people in my school's petition office. My scholarship had been funded by donations by kind patrons of my school. Shouldn't I be able to use it? Why did my school keep it, unused? It wasn't until last week, that the petitions office saw I had a valid case and returned to me my scholarship.
Now is where the real complications begin. In about five weeks, I get to start school. In about 6 weeks, my independent credits are due. Originally, a couple of my incompletes were due in 2 weeks, but I was able to get extensions. For the past 4 months, the drugs and hormonal treatments I've been receiving have greatly hindered my ability to not only work at school but also to remember things. Honestly, I have no idea how I will be able to handle the upcoming pressures of this fall semester.
But illness doesn't accommodate anyone for these type of things. Whether you've got a cold, a migraine, colitis, pneumonia, endometriosis, or cancer--you can't stop your work, school, family, or whatever your responsibilities may be. Which sucks. All your body wants is to rest.
How do I manage it? That, I'll have to say later. I don't really know currently how to manage all this. The best strategy I've found so far, was first I rested until my body was ready to move. Then each day, I have pushed it to move a little harder. A month ago, all I could do was sleep and rest. Now, in the past 24 hours, I've done yoga, a bike ride, and my first run (though brief) in almost 8 months. I'm exhausted. My body hurts--my abdomen kills and I've been having some intestinal problems. But by pushing myself a little harder each day, I'm building up the endurance I need to function in normal day-to-day affairs. Funny enough, casual things like being on my feet for several hours is much much harder than going on an 18 mile bike ride.
But now that I've built up the basic health and light endurance to start on school. I now need to build up mental endurance. It's hard to get back into the heavy studying required for a competitive school like mine. But we'll see how it goes. So, for those experiencing physical or mental health pain/problems, when you get to a point where you can live again, take baby steps but continually move forward. There may be days where you take a couple steps back and you're exhausted, but focus on goals and move forward. Write down lists, priorities, goals and schedules. Eventually you will feel normal again.
Six weeks ago, the doctors cleaned out my insides of foreign tissues and a tumor 4 cms big. Now I'm up on my bike and my feet. It bewilders me that some women have endometriosis and don't even feel it, while others can't even exercise or are bedridden from the pain. Endometriosis, just like illness in general, falls on a spectrum and is a different experience for everyone. So rather than focusing on how you 'should be' or where others are (most of my friends graduated), you need to focus on just moving forward. Every day you feel a little better is an accomplishment!
Sunday, July 17, 2011
This past couple weeks have been about striking a balance between pushing my body to heal and not pushing it too hard. After all, I am actually still experiencing quite a bit of pain. From the surgery a bit, that much is sure. I still can't heal up my incision wounds. I limp still some days and some nights I wake up frequently, despite sleep medications, crying from pain. The doctor says this is largely due to immune system shock and lack of protein.
I gained 12 needed pounds before my surgery. I am 5'6" and went from 108 to 120. Endometriosis can make you gain weight because of the hormones. But because I have colitis (which can cause absorption problems, meaning the food I ate wasn't being properly consumed), combined with the excessive pain from both endometriosis and colitis (so I wasn't eating enough consistently) made it impossible for me to keep weight. I went from 130 to 108 in a matter of months a couple years ago. But the medications and treatments I got fixed this. Well, post surgery and treatments pains, combined with treatment nausea, has made it difficult for me to eat. I am now 112 pounds, lost in about 4 weeks, a clear indicator that I am NOT getting the nutrients I currently need.
Food has been a bit of a battle this past month. To anyone recovering from surgery and/or undergoing lupron treatment, I can attest to the difficulties you can have eating. I can also attest to the necessity it is that you FIND a way to eat. I will maybe do two posts today, to make up for my lack of efforts recently, to detail ways I've found to still eat healthy. To put it briefly, I have made some sacrifices to get quality food and spent more time cooking to make the healthiest, most nutritious food I can and eating as often as I can. Exercise has also made it easier for me to eat. A little pain is worth it.
Most of what I have been working on is refiguring a balanced life. I have to pretty careful--autoimmune diseases are fueled by stress. If I push myself too hard or get frustrated, I could end up back in bed. Which isn't an option anymore--I have finally been returned my scholarship (which was taken away because I had to drop out for medical reasons and didn't defer because I thought I would be shortly back) so I need to start school in six weeks. So I can't afford to be sick. I am trying to regain strength and energy and the ability to balance life. Surprisingly, when your only focus for months has been beating a disease, you lose a lot of skills and abilities you would think are instinctual. I am sure cancer patients would know much more about this than I would, but returning to normal life (especially when your body still isn't ready) is kind of scary. I feel easily fatigued and overwhelmed by common requirements of a person.
It occurred to me that endometriosis, the severe kind at least, is kind of like a hormonal cousin of cancer. It makes tissues grow where they should not, can ruin organs, causes tumor growth, affects the whole body, makes you weak, and, if the cysts it causes rupture in the wrong way, it can kill you. But, unlike cancer, it's more easily treatable and does not claim nearly so many lives. I personally believe there are more risks in the treatment, as far as death is concerned. The treatments I am undergoing greatly increase my risks of breast cancer, strokes, and other problems. But here again is a balance--yes, I risk a grave sickness, but I can't live my life with this disease constantly dragging me down. The most important connection me and my disease have with more serious kinds, is that a positive attitude and a sense of balance (weighing risks versus benefits of drugs) is necessary.
I balance medication and injections with natural remedies. I get periodic injections of Lupron, a drug that induces temporary menopause, and take pills for 'add-back therapy'--replacing some of the hormones this drug robs me of, to keep me from going crazy (getting depressed, losing bone mass, hotflashes, etc.). I also take medications for colitis and asthma. To balance this, I exercise, eat a very healthy diet (when I can eat), and try to do yoga. I also removed dairy from my diet, which has helped somewhat. My body also gets very tired. I frequently have to rest more than I would like. To balance this, I bike on beautiful bike rides, try and do yoga, and swim. I feel a lot of pain the next day sometimes, but I know it's good for me! My body can't heal if it's overly coddled--I need to build up strength.
So, if endometriosis, colitis, any sickness, or just life is beating you up, when you try to heal up, keep perspective and try to balance. Easier said than done--I sometimes tip the scale more one way than the other. I suppose the key is not to get discouraged. It's difficult at times, but staying positive is the only real choice I have. I guess my best advice is not to let bodily dysfunction consume your life. Stick to balance and try to beat it while, at the same time, just riding it out some days.
(picture up top is from my bike ride this past weekend)
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About The BedRiddenHead
This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.
Thank you for stopping by, I wish you strength in your health, struggles, and happiness.