Saturday, October 13, 2012

Sleep Restriction Therapy

Insomnia is a common symptom of Endometriosis and, to be honest, most chronic illnesses. About 30% of the general population suffer from it in some form. Especially women. Insomnia is a general term for difficulty with sleeping. This can indicate a lack of feeling rested, struggling with falling asleep, or waking up several times a night. To oversimplify, it is a pervasive feeling of sleepiness. It can be acute (brief), chronic, or in-between. On rare occasions, a person may have insomnia for no reason at all (no  mood issues such as anxiety or any medical problems to explain sleeplessness); this is called primary insomnia. Primary insomnia is very rare. Much more common is that someone has insomnia as a symptom of some underlying issue. Thus, when treating insomnia, doctors will often try to get at the underlying issue.

However, what if that issue is, in reality, quite unsolvable? When it is a symptom of an incurable disease, there really is not much that can be done about the cause. Treatment becomes about managing the symptom of insomnia because the disease responsible is hard to tackle. In these cases, relaxation/sleep hygiene techniques can be helpful, but some patients may permanently rely on sleeping medications. This is what I had to do for almost a year. Lupron had aggravated my insomnia into such severity that I became completely dependent on Ambien. I could go days without sleep if unmedicated, or at least was up until daylight. No matter what I tried (yoga, reset of circadian rhythm, exercise, sleep hygiene, etc.) nothing worked. It was awful. Only with Ambien was I able to get nightly sleep. However, Ambien does not really give restful sleep, and it leaves you groggy the following day. Its users risk serious side effects and it is habit forming. I myself developed a temporary dependence. Well, not wanting to sleep this way, I decided I did not want to live my life like this, and I sought aggressive help.

Cognitive therapy was my solution. My major was in Psychology, but my focus was in 'Neuropsychology: Brain, Behavior, and Cognition'. I relished reading research on brain plasticity and using cognitive therapy to change brain functioning. Thus, when my sleep doctor suggested this solution, I enthusiastically agreed. (The best part actually was that we could both use the medical terms and jargon on the subject and have pretty intense conversation over it, which I think was fun for both of us.). He very clearly communicated that it would be a difficult therapy to undergo and that I would not enjoy it. However, he also was fairly confident that it would work.

Cognitive Behavioral Therapy uses conditioning and thought exercises to change the reactions of the human mind. The therapy methods are simple but complicated, and today I would rather focus on this specific application. So allow me to try to focus...

My brain was not responding properly to bed time; rather than going to sleep, it would rev up. Not with worry or anxiety, but rather with simply more thoughts than I had time for. This was partially due to my body chemistry but also had to do with with my unintentional conditioning my body to only seek rest when relaxing--not to sleep. Too much bed-rest from surgery and pain, too many sleepless nights where I could not leave bed but could not sleep either, and, overall, just too much time spent in bed without sleeping, had taught my brain that bed time did not equal sleep time. With the underlying disease contributions to my insomnia, along with this bad conditioning, sleep, for me, became a dream (pun intended). So, the goal of this therapy was to change to how my brain reacted towards bed time. To compensate.

Note: I am not a health care provider and am sharing this information for informative purposes, not medical advice.

How it Works:

  1. The basic set up: I kept a sleep diary to track my progress, to give both my doctor and I an idea of what my progress was. It was also to establish a baseline (pre-therapy) of how bad my sleep issues were. I began practicing more ritualized sleep hygiene. I can go over this in a follow up post, but basically I had 'bed-times' for what activities I could do up until a certain time (e.g., I was not allowed to work on my book within two hours of bed time, same with class work). 
  2. I had to pick a five hour time frame in which I was allowed to be in bed. Any other time of day, I was not permitted to be in my bed. I picked 2:00 am to 7:00 am. Not only was this my only allowable bed time, but it was also my only allowable sleep time. No napping, no 'resting my eyes', no sleep whatsoever, except from 2:00 am - 7:00 am in my bed. This is how the sleep restriction takes place. And this is how you teach your brain that it has a specific time and place for falling asleep.
    1. I'll admit that for the first couple of weeks, it was incredibly difficult to not accidentally fall asleep. I'd take my dogs on walks, clean the house, put on a loud movie, but while it seemed impossible for my brain to shut off at night, it loved to disengage during the day time. This is called delayed sleep phase disorder. More commonly, you would call a person like this a night owl. People like me can thrive on just five hours of sleep but we usually can't sleep until very late at night (e.g., five am), which does not fit the common schedule of the workplace/life. 
  3. The goal was to be able to fall asleep within 20 minutes of being in bed. If I could not, I needed to get up for fifteen minutes, leave the room, and then return. Why? Because this is part of teaching my brain that it cannot be awake in bed. When you 'lie awake at night' you are reinforcing to your brain that that is an appropriate activity in bed. 
  4. If, for three nights in a row, I could fall asleep within 20 minutes, I could take back my bedtime by a half hour (e.g., instead of 2:00 am, I could get in bed at 1:30 am). If I took longer than twenty minutes even for one night, I had to slide back to the previous slot (though not beyond the original 2 am). The goal was to get three nights in a row of quick falling asleep, because then I could get more sleep for that night and the following nights. This was a pretty good incentive. Additionally, it gave my brain the steady conditioning it needed to respond.
    1. Now, with the extreme sleep deprivation I was experiencing, you would think this would be easy. That within a few days I would be out in minutes. But I am talking about severe insomnia here. It took about four weeks before I was able to move my bedtime to 1:30 am. Usually, this therapy is only supposed to take about four weeks, so do not be daunted by my month of sleep deprivation. I have other sleep issues (sleep terrors, sleep walking, panic attacks, sleep apnea) so these all could have factored into the extra time. 
  5. Keep this pattern up until you reach your desired bed time. Until you are steadily able to fall asleep when needed, do not change your wake up time. If you wake up early and cannot fall back asleep, it is okay to get up early, but do not sleep in. Even if, for example, I had a late night out and did not get back until 3 am. I would still just get into bed and wake up at 7. The wake up time is not a choice. 
  6. Currently, my bedtime is 12:30 am. I should be at midnight, but I have needed to take a lot of pain medication this week (Ultram) and it makes me very sleepy, so I have been accidentally napping (Yikes!). However, I am not discouraged, because I am having an infinitely better time falling asleep than I was six weeks ago. I am more rested and look forward to bedtime.
Important Points
  • The schedule is everything
  • Get daily exercise in some form. Sleep is always easier when you exercise; just make sure not to do it too late in the day (as this can keep you up). 
  • Practice sleep hygiene; these are rituals that help cue your body it is time to settle down. For example, nightly showers, brushing teeth, dimming the lights, etc.. I really think I should do a post on this ASAP, and I will link it from here once that is done.
  • Do not get discouraged; it is a hard therapy to stick with, but the results are invaluable. 
  • Make sure those around you respect what you are doing. I warned my family and loved ones that I would be doing sleep therapy that would probably make me really cranky. I communicated that I always needed to be up at 7:00 am. Little things like that can garner some support and/or, at the least, respect for what you're doing. 
  • Keep a daily journal of foods/activities/pains/sleep, if you suspect there is some pattern contributing to your sleeplessness. I didn't keep up the sleep journal because there really wasn't a pattern. Just random issues that would pop up. However, I'm sure it would have been more helpful had I done so (and I regret discontinuing it). 

So there it is. My sleep therapy. The thing, the first thing, that my insomnia has EVER responded to. It's been amazing. I look forward to sleep now. So please, if you are struggling with insomnia, I highly recommend giving this a try. If you have any questions/comments/concerns, please feel free to contact me (either by commenting, my Facebook page, or my Email). I have a follow up with sleep doctor soon and will see if he has any comments/advice he would like to pass on. Thank you for reading and good luck!!!

Side note--This has been an incredibly popular post, so I will be writing another to provide more information. Please don't forget that I am not a doctor nor your doctor, so always remember to check with a healthcare provider, before making changes to your health care routine!


Sunday, October 7, 2012

The Bed Head's Personal Sushi Recipe

Note: I'll add pictures and a video to this post, the next time I cook this dish

I wish I had a non-blurry photo
of this delicisousness!
So making Sushi is one of my favorite meals to 'cook', because it naturally gluten free, delicious, and easy to make healthy. More often than not, when you go out for sushi (American sushi) you get fried rolls stuffed with cream cheese. And while fried panko on rolls is fun, it's hardly nutritious or gluten free. And, as an added benefit, you will get fish oil and omega fats naturally!


First you'll need the basic ingredients. I recommend my favorite salmon roll, but you can get creative after this first try. Pretty much any roll you'd like to try (e.g., crab salad with carrots, cucumber, and radish) you will be able to make. It's just a matter of buying ingredients you enjoy, are healthy, and are easily sliced and placed into the rolls.

Ingredients list: 

For Sushi Rice Wrapping:

  1. 10 sheets of Nori (different seasonings/qualities, find one you enjoy!)
  2. 3 cups short grain rice (AKA sushi rice) 
  3. 1/3 cup of Mirin 
  4. 3 T of sugar
  5. A sushi roller (It is a sheet of bamboo sticks tied together, it looks like this)
  6. Optional: Wax Paper and Saran Wrap
For Sushi Fillings: 
  1. 4-8 ounces of Sashimi Grade Salmon (make sure this is the right cut/quality/freshness for sushi)
  2. 3 T of Low-Fat, Organic Cream Cheese (the spreadable kind; can use more if desired) 
  3. 1 English Cucumber 
  4. 2 Carrots
  5. 1/2 c Cilantro
  6. 1 bunch of Green Onions
  7. 1-2 Avocados 
  8. 1/2 c Bean Sprouts (optional) 

Directions: 

The Rice: 
  1. Prepare the short grain rice in water, using a rice cooker or a pot. If using a pot, bring 5 cups water to boil, add rice, cover, and let it cook/simmer appropriately. Do not add salt to the water. Do not let the water boil over. It should take around 11 minutes to cook, but this time varies a lot. 
  2. Mix the 1/3 cup of Mirin with the 3 T of sugar (you can alter the amount of sugar added based on the sweetness of rice you desire). Mix until sugar has largely dissolved. Sometimes heating the mirin slightly first can speed up this process.
  3. When Rice is finished cooking (and has sucked up all the water), toss it with the Mirin-Sugar mixture. You can do this in the pot or in a fresh bowl. Toss it well, making sure to spread the mixture throughout. After you have adequately mixed the mixture, the rice can sit with plastic wrap over the top to prevent it from drying out.
    1. *Note: the rice must be cool when rolling the sushi, so I usually make the rice earlier in the day. If you are rushed for time, you can place the covered rice mixture into the fridge. This can greatly reduce cooling time. 
The Rolls Ingredients:
  1. NOTE: When cutting up ingredients, it is important to keep in mind that you want to chop them into shapes/lengths that will best fit in the 7 inch rolls. So, after peeling the carrots, I cut them length wise into maybe half centimeter widths and 7 inch lengths. If your vegetable is not long enough to be 7 inches (e.g., the avocados) then just cut it as long as it can go and you can string them along the inside. Remember, the thickness determines how much of that ingredient will be in each, individually cut roll. So, use your judgment on how much 'carrot' you wish to have. 
  2. To prepare the avocado: cut in half lengthwise, around the pit, and turn the sides in opposite directions to peel them. Remove the pit. Using a somewhat dull knife, cut vertical slices in your desired thickness along the inside of the fruit. Do not cut through the skin. Then, you can run your fingers under the cut pieces, and push them out of the skin. Ta-da! If any are too thick, just adjust, but this way you can get the longest cuts possible. 
  3. Preparing the green onions: find which part of the onion you prefer--if you like the white ends better than the tops of the greens, then make sure they're present. Personally, I cut off the whitest parts for this. I feel they are too bitter. 
  4. Cilantro: if you like the strings of cilantro, then just separate out the bunches into individual lengths. If you prefer only the leaf, pull them off individually. If you like to mix cilantro with the added cream cheese (thus using the minimal amount) then chop/mince it and mix it into the cream cheese. 
  5. Carrots/Cucumber/Bean sprouts: these are pretty self explanatory. Cut off parts you don't want. I advise peeling the carrots. Cucumbers can be watery, so try to get as much of the outer ring as possible.
  6. The fish: make sure you are using a sterile area (as meat is a grand target for germs). I always place a few layers of wax paper over a clean cutting board. This protects both the fish and the cutting board. I slice the salmon into long pieces (like the vegetables) with a good fish knife. Because I want the meat to be the focus of the sushi, I cut them into almost 1 cm thick pieces. Again, personal preference. If you have less meat, I recommend 1/2 cm, to make it last. 
Rolling the Sushi:
  1. In a clean area, lay down some wax paper (if you prefer easy clean up) and set down the bamboo roller. Place a similarly sized sheet of cling wrap over that bamboo roller. This will keep the rice from sticking to the roller and can better prevent tears in the rolls
  2. Place down 1 sheet of nori on top of the bamboo roller (and the saranwrap). 
  3. Using a wooden spoon, dish out the rice and spread it over the nori paper. Carefully, as the seaweed paper is delicate. Spoon on your desired thickness. I do about 1/4-1/2 an inch
  4. At the top, spread out our desired amount of cream cheese. I just barely spread some over, as I do not like it much, except it adds a great richness in limited amounts. 
  5. Line up your ingredients along the top, in an even line. Make sure that each ingredient is present over the 7 inches. Remember, you'll be slicing this up, and if the ingredient is missing from that slice, you won't taste it. I try not to over load this amount, as you have to be able to roll it up. Generally, I do one line each of included ingredients. 
  6. Using both hands, carefully fold over the top of the bamboo roller, rolling that first layer of ingredients into itself. The idea is you are trying to tuck the roll into itself. This can take some sliding and adjusting. Once satisfied, press down. 
  7. After that first press, slowly work on getting the entire length of nori/rice around that initial fold. Try to use even pressure, to encourage a round shape. This honestly is a trial and error sort of thing. Hopefully, when I get some video, I can better show how to do this step. 
  8. Eventually you will reach the end of the roll. Take that, place it at the top of the bamboo roller, and do a complete, even wrap around the roll. Press firmly, though not too hard (you do not want to spill out ingredients!).
  9. Unroll your bamboo roller, take a look at your first roll! Ta-da!
  10. Using a sharp, serrated knife, carefully cut off 1/2-1 inch rolls from the main roll, horizontally. Now you have your individual rolls! Wow!
  11. Repeat until you have used all your ingredients!
  12. *note: if you run out of most the ingredients but have left over rice and salmon, it's super easy to make nigiri sushi with that ;). Just shape the rice and plop the fish on top!
Boyfriend is a willing helper (AKA captive) 
Serving Suggestions
  • Use what ever you like to serve/dress/eat the sushi. Personally, I like to use chopsticks, teryaki sauce, with a little soy sauce and wasabi. Enjoy your feast! 
  • Extra toppings: Salmon roe, wasabi, fried in brown rice flour, Sriracha sauce, soy sauce (yes, there are gluten free kinds!), cooked ginger, cooked cabbage... the possibilities are endless!


Saturday, October 6, 2012

Myths and Facts of Endometriosis, Part II

The last article received a lot of view, so I am hoping that means this topic is a helpful one! If anything, it tells me that there is good reason to cover more of these. For better or worse, there are many myths about endometriosis, and there is plenty of material to cover. Even if I did a hundred posts, I'd probably never cover them all. But I'll try my best to cover the ones that stick out to me!


Myths

1. Endometriosis is Very Rare
  • Endometriosis is the most common gynecological disease out there. Prevalence estimates run anywhere from 7%-10% of the female population (1). 
  • Prevalence of endometriosis is high in women with pelvic pain. For example, in a study of female adolescents with persistent pelvic pain, 70% were successfully diagnosed with endometriosis (2). 
  • Despite how common it is though, many people have never heard of it; not even once. This unfamiliarity is unusual, considering its high prevalence. To put it in perspective, consider the prevalence of commonly known disorders/diseases: color blindness (4.2%), asthma (3.5-5.5%), shingles (0.18%), and tonsillitis (0.7%). I could include many more diseases, but I am trying to use milder examples to prove a point. Why is endometriosis relatively unknown in comparison?
  • One hypothesis is that it this is partially due to cultural norms discouraging women from complaining about reproductive pain. Even if that pain is beyond 'typical'. While women are encouraged to share relatively minor pains and frustrations, many cultural norms discourage expressing severe pain or hardship. Particularly regarding pains associated with 'reproductive functions'. These pains are largely considered 'part of being a woman' and something to be endured (3). Consequently, many women do not speak out or are afraid of having their fears/discomfort downplayed. And without proper reports of endometriosis pain and symptoms, the severity, disruptiveness, and extensiveness of endometriosis goes unheard. 
  • The stigma of 'grossness' can hinder public discourse and awareness of an illness. Put simply, disease attractiveness can affect its attention. Diseases and disorders with relatively 'clean' symptoms are commonly discussed and campaigned for. Unfortunately, embarrassment for messy or unnattractive symptoms can reduce the willingness of patients to share their experiences. For an easy example, consider the difference in awareness for colon cancer and breast cancer. Somehow, I do not imagine 'Think Brown' would experience as much success...
  • Additionally, there is the problem of a somewhat flagrant attitude towards female pain in medicine. Women, more often than men, are regarded as inaccurate in their perception of pain and are less likely to receive adequate pain treatment. Women are seen as 'whiners' and are consequently ignored. Unfortunately, even if women with endometriosis are communicating to doctors and media that they are in immense physical/emotional pain, the problem does not receive the acknowledgement/belief it deserves (4).
2. A Hysterectomy Cures Endometriosis 
  • Everyone with endometriosis has probably experienced pressure from their doctor(s) to get a hysterectomy (5). I have several times over. Always with the reassurance that 'if I haven't found relief, I need to look at this long-term solution'. They are 99% certain that my pain would go away. And, up until I more seriously researched the issue, I was ready to schedule surgery. I've got to say, I was 22 years old and it was devastating to decide right then that I was never going to try to have children and would be under permanent menopause. But I was willing. Until I found out that it was unlikely that I would be undergoing a long-term solution. Especially because of my age--research has shown that younger age hysterectomies are vastly less effective at preventing future pain/relapse than later age hysterectomies(*). And, while hysterectomies do, on average, improve pain in patients, they are in no way an end-all cure. About 15% of hysterectomy patients report no change in pain and 3-5% of patients indicate a worsening in pain symptoms (6). This also ignores the damaging affects of early sex organ removal and the side effects of the consequential hormone replacement therapy. 
  • I really do not want to consider the sources of this myth. Of course, there is the research that shows that, on average, there is improvement in pain (which ignores about all the negative consequences aside from pain). I like to think that the majority of doctors believe they are making the best medical decision for their patients. I do believe that a person goes into medicine with a desire to help people. However, I have also read in places that there is a serious market for profit in performing hysterectomies. I do not want to report numbers and stats on that here, because the numbers really can't say much about the perceived motivations (assigning meaning to statistics is easy--confirming those meanings is a complicated issue). And I think it is easy for frustrated people to jump on the mob train and go wild. I just want to mention... that it is a possible money source. Look it up for yourself and make your own opinion, because I honestly can not trust my judgment in this case. 

Facts

1. Endometriosis is caused by Environmental and Genetic Factors (see Causes of Endometriosis
  • An important thing to remember with endometriosis is it is caused by an interplay of heredity and environment (7). Risk factors are still being studied and questioned by the medical community.  
    • Women with relatives with endometriosis have a higher likelihood of the illness (8). Women with a sister/mother with endometriosis are 7-10 times more likely to have it themselves, and there is gene linking research that has identified certain genes as problematic for endometriosis (particularly immune and reproductive genes). These studies show that environment alone cannot account for endometriosis development; there are genetic factors involved.
    • Well designed environmental research is a struggle. Obviously, it's impossible to conduct a human experiment (you can not trap a child and rigorously test what toxins cause endometriosis). Delays in diagnosis and limited availability for treatment also limit research (9). Survey studies, which study correlation of factors, are also difficult due to the extent of confounding factors. Confounding factors refers to things that are not readily apparent and can interfere with research (e.g., when studying drunk driving accidents, the time of night could be a confounding factor that only includes intoxication and skill of driver). It's hard to know what may be contributing to endometriosis, so there are many potential confounding factors out there. However, there are a few established risk factors, such as exposure to environmental toxins. 
  • What can be drawn from this fact? That a woman's development of endometriosis is not something she contracted, made bad choices for, or has any real control over. It's like children that develop asthma because of an in-city coal plant. They did not put it there and they certainly did not plan on developing asthma.  
    • The combination of genetic and environmental factors support that we should work to identify which specific toxins are especially hazardous and high risk for illnesses such as endometriosis. If we could better reveal what exactly contributes to endometriosis, we could better campaign for the reduction or elimination of the pollutant. 

  1. Gruppo Italiano per lo Studio dell'Endometriosi. (1994). Endometriosis: prevalence and anatomical distribution of endometriosis in women with selected gynaecological conditions: results from a multicentric Italian study. Human Reproduction, 9(6), 1158-1162.
  2. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  3. Krotec, J.W., & Perkins, S. (). Endometriosis for Dummies. 
  4. Hoffmann, D.E., & Tarzian, A.J. (2008). The girl who cried pain: a bias against women in the treatment of pain. Journal of Low, Medicine, and Ethics, 28, 13-27. 
  5. Wellberry, C. (1999). Diagnosis and treatment of endometriosis. American Family Physician, 60(6), 1753-1762. 
  6. Vercellini, P., Barbara, G., Abbiati, A., Somigilana, E., Vigano, P., & Fedele, L. (2009). Repetitive surgery for recurrent symptomatic endometriosis: what to do? European Journal of Obstetrics & Gynecology and Reproductive Biology, 146(1), 15-21. 
  7. Dun, E.C., Taylor, R.N., & Wieser, F. (2010). Advances in the genetics of endometriosis. Biomedical and Life Sciences: Genome Medicine, 2(10), 75. 
  8. Simpson, J. L., Elias, S., Malinak, L. R., & Buttram, V. C. (1980). Heritable aspects of endometriosis: I. Genetic studies. American journal of obstetrics and gynecology, 137(3), 327-331.
  9. Mcleod, B. S., & Retzloff, M. G. (2010). Epidemiology of Endometriosis:: An Assessment of Risk Factors. Clinical obstetrics and gynecology, 53(2), 389-396.


Monday, October 1, 2012

Myths and Facts of Endometriosis, Part I

Before I begin this post, I wanted to quickly inform those of you about my progress with the cognitive therapy for insomnia. I've suffered awful insomnia since I was little, but getting so sick swung it into overdrive, and I became completely dependent on sleeping medications for any rest. A therapy that was meant to take four weeks has been in progress for about six, but I am finally beginning to see some improvement. If it continues to improve, I will do a post on how to conduct this therapy for yourself. Many people (especially women) suffer from insomnia without really knowing what to do for it. And with endometriosis, that is extra frustrating, because you are tired all the time but cannot sleep! But maybe I've finally found some answers--I look forward to posting successful results!

Now, here's the good stuff. Because of heated political proceedings and general misinformation surrounding disease, there seems to be a great deal of endometriosis myths floating around. Some are old, some are new. Some have been said by people who should know better and some are just gaining steam because social media allows incredible dissemination of thoughts without requiring any sort of credence. Hopefully, this will be a chance for me to address some of the rumors going about and give some proper information. I will address the issue, the facts/myths surrounding it, where it came from, and comments/research/anecdotes into the actual issue it may reflect. 

Myths: 

1. Endometriosis is caused by __________
  • Abortion: Apparently, this has been an especially heated issue because of some misunderstandings between republicans and democrats this current election. At the Democratic National Convention, Ms. Bruce discussed how treatments at Planned Parenthood made her daughter possible, because previous doctors had dismissed her endometriosis symptoms and not properly treated her(1). Now, because everything must be turned political, opponents of planned parenthood began spreading the 'fact' that elective abortion can cause endometriosis*. Now, thankfully, I have not been able to find any remotely credible sources spreading this 'fact'. It seems to be have largely been distributed by word of mouth. Yet, I did find some 'expert medical advice' sites describing the same thing(2); here, she says that the scraping of the uterus allows entry of endometrial cells into the muscular lining of the uterus. It does seem to be a believable misconception. 
    • Where does this misconception come from? Honestly, it's difficult to say, because there is pretty much zero research linking the two. My guess is that people have confused spontaneous abortion with elective abortion, and have also confused the order of endometriosis and infertility issues. Endometriosis does cause scarring of the abdomenopelvic cavity organs, especially reproductive ones. And this makes carrying pregnancy to full term sometimes difficult/impossible. The fetus can struggle to attach, develop, or maintain growth. When a miscarriage happens, this is considered a spontaneous abortion. Thus, there is a connection between endometriosis and spontaneous abortion, but even then, there is an order to the two issues. 
  • Teen Pregnancy: Wow, I never expected to see a myth like this. Because of the ridiculousness of the idea, I'm going to focus more on how it completely violates the biology of endometriosis, and then explain what may have given the idea ground. Many modern theories about endometriosis involve the idea that delayed pregnancy is involved with the higher prevalence of the disease. From an evolutionary standpoint, women began having children young, with frequent births/miscarriages throughout their lives. Their bodies did not evolve to have frequent periods and a long period of time between menarche and the first child birth. By comparison to today, we wait many years, and even age 18 is considered very young. These additional menstrual periods (which are actually extremely traumatic events to be happening on a monthly basis) give additional opportunities for proliferation and further damage by the disease. Giving further weight to this hypothesis is the evidence that often women get some relief from endometriosis by having children (i.e., pregnancy). Now, this relief time may vary from woman to woman, but there is usually a temporary relief of symptoms following a full term pregnancy. 
    • This myth, though somewhat present prior, was recently brought to attention by Dr. Satya Narayan, a clinical researcher(3). 
      • In his article, he says that risk factors for endometriosis include "...teenage pregnancy, poor personal hygiene, low body immunity, prolonged mood disorders and severe hormonal disharmony". The major hot buttons including teen pregnancy and poor personal hygiene. 
      • Now, in this doctors defense, let me explain how case studies work: they analyze individual cases, not overall populations, to draw ideas on a disease. However, most case researchers acknowledge the blatant lack of sampling in their research and use it primarily for commentary value and a launching pad for more extensive research. Issues arise when they talk about their research as if it is 'definitive', which this man did. He even says in his article that this was 'his experience'. To me, it seems egotistical and dangerous to regard personal patient experience as a reliable resource for a highly variable disease. 
      • Additionally, he seems to disregard the golden rule of 'correlation does not equal causation', meaning that, just because two events (e.g., endometriosis and hormonal disharmony) co-occur together, does not give any information on how the two are connected. You cannot draw any ideas on which causes the other, making it a completely unscientific statement to draw any conclusions from. Especially when those correlations are built on single case data. 
      • The fallibility of his ideas are supported by the widespread rejection and falsification of his conclusions. I would advise the doctor to better follow the standards of medicine, and to refer to experimentation and proper research before drawing extreme conclusions.
2. Endometriosis does not affect young women
  • This is not a myth I see everyday, but it is one I do see too frequently. This misconception that endometriosis is a disease that only appears later in life. I am only 23 years old and have had three surgeries and a Lupron treatment (the lovely hormonal chemo that ruined my life). Often, when seeing an unfamiliar doctor, their first comment is, "you seem way too young to have such severe problems with endometriosis" or even, "you're too young to have endometriosis". 
  • Where does this myth come from? 
    • It could possibly be because the longer endometriosis goes untreated, the more severe it becomes, and the more likely a woman will be seen for surgery (later on in life). (*explanation: I am referring to the cumulative effects of scarring and damage, not the increased growth of endometrial tissue). 
    • It could also be because our society has difficulty believing younger people's complaints (personal e.g., I had asthma attacks in gym at school and was told by the teacher to 'stop telling lies'). 
    • Another possibility is that younger women have yet to realize just how abnormal their menstrual life is. I had my first period at 11 and it was two weeks long. I had no idea that most girls my age had not even had one or had 2-3 days worth. It took me many years to realize that my symptoms were much more severe than 'average'. And no doctor was really concerned by my extreme reports of pain because I was not 'old enough' to have serious issues.
  • Endometriosis does affect young girls. An awesome 1997 study by the Children's Hospital in Boston worked to disprove this myth exactly. Many doctors use conventional therapy to treat chronic pelvic pain in adolescent girls. This study took a sample of 32 such patients, performed diagnostic laparoscopic surgeries, and found endometriosis in 70% of the patients(4). 
  • A study by Laufer et al. (2003) also supports that children and adolescents can develop endometriosis, even prior to menarche (a woman's first period). Girls as young as 8 years old were diagnosed and treated for endometriosis.(5)
  • If adequate progress is to be made on this disease, the first step is proper diagnosis and identification of those suffering. I've written before that earlier treatment results in better outcomes. If doctors were better educated on the prevalence of endometriosis in children/adolescents, or more willing to admit the possibility, they could be saving the well being of these women. After, all, if 7-10% of women have endometriosis  and it can develop around the earliest of periods, it would be better to identify this significant number of girls/women as early as possible. 
Facts:

1. Endometriosis pain is not 'normal' period pain
  • Whereas the slight pain/discomfort that can arise from a woman's monthly cycle is an inevitable part of Lovely-Miss-Mother-Nature, the life disrupting pain of endometriosis is not
    • Many doctors, friends, family members, anyone, sometimes seems eager to explain how every period is the same. Before learning to 'keep quiet', I was often given advice to 'walk it off' or 'learn to deal with it like the rest of us have'. Like many with a misunderstood disease, I have experienced some pretty insulting misunderstandings of how I am feeling.
    • Let me try to communicate how this misunderstanding can be perceived. I often sprained my wrists growing up (I loved to skateboard, but was not particularly good at it). My friends, more extreme riders than I, suffered significantly more injuries and breaks. If I had gone up to a friend with a caste for a shattered arm, showed him my bruised wrist and said, "you just need to tough it out like me"... that is pretty much how this sort of talk feels. 
    • A five week period does not feel like a five day period. Pain that makes you pass out or vomit or collapse is not the same as 'Advil' pain. Heck, even Advil pain could be a sign of minor endometriosis (which is more common than the more severe types). But needing a hot water bottle and needing a bottle of morphine is a completely different level of pain. It's not the same, nor is it normal, nor should it be considered normal. 
  • Whether the pain is tolerable should not be a viable measure of the presence/severity of endometriosis
    • Endometriosis is an extremely complicated disease in regards to its effects on pain. The extent/severity of endometriosis has little to do with the pain it inflicts(6), but the pain is a valuable indicator of the presence of the disease. If a menstural cycle is painful enough to disrupt daily functioning, even if it can be borne (i.e., forcing oneself through the pain), it is a good sign that something is wrong with a woman's reproductive organs and should be addressed. After all, various studies have shown that endometriosis is present in 2-72% of cases of chronic pelvic pain, with averages hovering around 33%(7). 
    • (This is an anecdote for myself here, but it seemed relative/valuable. Skip over if you wish!): My pain is a complicated topic for me. Something I've come to discover is I have a very high pain tolerance. I have played/competed in extreme sports my entire life. I have broken, dislocated, bruised, cracked, sprained, twisted, etc. pretty much every limb/joint/spot on my body. I have had reconstructive shoulder surgery. I have even needed plastic surgery, after tearing off my chin, to restore part of my face. I have learned to tolerate pain to the extent that my lifestyle required. Even though endometriosis pain has been so very different from this standard injury pain, I have still tried to force myself to cope as much as I can. I resist medications, rests, and treatments as long as I can because I do not want to be dependent on them. I have learned to live with a near constant throbbing in my lower cavities, painful movements, and difficulty with daily bodily functions, because that is how I cope. But this does not change that the pain is there or make it normal or make it acceptable. It drives me nuts to have doctors tell me how I should be feeling, because, really, it is up to my body and my brain to decide that. Even worse, if they completely ignore the factors of neuropathic pain and only evaluate inflammatory pain, they are dismissing a lot of the pain related to this disease. Research has shown, again and again, that severity of endometriosis does not correlate with severity of symptoms or pain. But I suppose a discussion about the dismissal of pain is for another day.

I have a fair number of myths/facts to write about with this disease, and it will be impossible to address them all in a single entry. Please check back, as I would love to explore it more in depth. Thank you very much for reading, please, if you would like any myths/facts addressed, please add them in the comments bar or email me, thank you!

*Personal Note: I am 'politically' pro-choice and 'personally' pro-life. I support the right to reproductive freedoms and medical resources, even if I would not choose it for myself (outside of medical necessity). Overall, I feel I do not have the right to judge another's choices or circumstances, I respect the right to control one's own living body, and I have seen many situations where abortion was a person's only option. I also understand that abortion is a difficult issue for many, and I can empathize that many people will disagree with me.
I am not trying to discuss the rights/wrongs of this. What distresses me, is that, out of desperation for political advantage, people are willing to disseminate incorrect/hurtful information about a disease they have no understanding of.
Endometriosis is not a political tool for abortion. People have passionate, complex reasons for the beliefs have surrounding abortion, on every side, and there is no valid reason to drag in an unrelated disease to the debate. Not only is it selfish, it is also particularly cruel to involve a disease with high infertility and miscarriage rates. It paints people with endometriosis as responsible for their illness and burdens. 

Sources:
  1. http://endometriosis.org/news/opinion/abortion-does-not-cause-endometriosis/
  2. http://en.allexperts.com/q/Abortion-1320/2011/7/abortion-endometriosis.htm
  3. http://www.international.to/index.php?option=com_content&view=article&id=6928%3Awhat-is-endometirosis-all-women-should-read-this&catid=84%3Ahealth&Itemid=276
  4. Laufer, M., Goitein, L., Bush, M., Cramer, D., & Emans, S. (1997). Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. Journal of Pediatric Adolescent Gynecology, 10(4), 199-202.
  5. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  6. Vercellini, P., Trespidi, L., De Giorgi, O., Cortesi, I., Parazzini, F., Crosignani, P.G. (1996). Endometriosis and pelvic pain: relation to disease stage and localization.  Fertility and Sterility, 65(2), 299-304.
  7. Guo, S-W., & Wang, Y. (2006). The Prevalence of Endometriosis in Women with Chronic Pelvic Pain. Gynecological and Obstetric Investigation, 62, 121-130. 

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Contact me at bedhead@bedriddenhead.com

About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

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 and happiness.